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A listing of Home Care/Home Health Case Studies . 

• T elehealth Helps Great Plains Health Patients Manage Their Conditions Confidently in the Comfort of Their Home to Improve Outcomes : In this case study, Great Plains Health chose a Tailored Ambulatory Care platform and Remote Patient Monitoring Program for Transitional Care from LeadingAge Silver Partner and CAST Supporter Philips to scale up their tailored ambulatory program. The effort produced 98% patient satisfaction scores and reduced hospital readmissions. The technology also improved the team’s ability to educate patients to care for themselves, to coordinate care, and to help patients reconcile their medications. Patients also enjoyed the security of monitoring.
• Evaluation of Selfhelp Community Services’ Virtual Senior Center : This case study explores how CAST Patron Selfhelp Community Services established a technology-driven program called the Virtual Senior Center (VSC) to enrich quality of life for socially isolated homebound older adults. 
• Reducing Blood Pressure among Engaged Participants through Multi-User Telehealth, Gamification, and Engagement Platform : This case study shows how technology company higi SH llc examined the relationship between ambulatory blood pressure (ABP) and patient engagement with a nationwide ABP kiosk platform deployed in pharmacies, grocery stores, and other community centers. Results showed a statistically significant relationship between frequency of engagement and lowering of systolic blood pressure. This study is applicable to the broader senior living market, as ABP kiosks provide an accessible, affordable, convenient and accurate means for individuals who cannot afford home BP devices to monitor their BP.
• Targeting the ‘Superusers’ of Healthcare With Telehealth : This case study describes how Banner Health monitored 135 clients who had at least 5 chronic health conditions. The project used a range of biometric sensors from LeadingAge Silver Partner and CAST Supporter Philips, and the Philips Lifeline personal emergency response system with automatic fall detection. In addition, program participants were matched with a multidisciplinary care team that included health coaches, nurses, social workers, pharmacists, and primary care “intensivists.” Outcomes included a 27% reduction in cost of care, a 32% reduction in acute and long-term care costs, and a 45% reduction in hospitalizations.
• Supporting Independence of Seniors through Remote Activity and Adherence Monitoring : Recover Healthcare had first-hand experience with some of the healthcare trends impacting their business and the long-term care industry as a whole, and were interested in leveraging technology to help address some of these challenges. Having already partnered with PointClickCare for over five years for their senior care facilities, Recover Healthcare saw an opportunity with PointClickCare’s acquisition of TouchStream Solutions and the possibilities of in-home remote monitoring.
• 2016 Shared Care Planning and Coordination Case Studies:  5 case studies highlight how providers went about implementing these technologies, the impacts they experienced, lessons they learned and pitfalls to avoid.
• Integrating Innovative Technology in the Home to Provide Enhanced Continuity of Care and Decreased Healthcare Costs for Older Adults : Element Care’s PACE (Program of All-Inclusive Care for the Elderly) program in Massachusetts North Shore, the Merrimack Valley and northeast region of Middlesex County implemented a Digital Avatar with Voice Activated Assistant Technology and Captioning to provide enhanced continuity of care in the home.  The technology was provided by Care.Coach.
• Using Technology to Reduce Social Isolation and Depression in Homebound Older Adults : Nonprofit Care at Home New Jersey (CAHNJ) has reduced social isolation and depression among study participants who used a touchscreen Telikin computer to communicate with family, friends, and CAHNJ personnel.
• Improving Medication Compliance, Quality of Life, and Peace of Mind through Voice Assistant Technology : Libertana Home Health in Sherman Oaks, CA implemented a voice assistance technology to improve medication compliance, quality of life, and peace of mind. The voice assistance technology was provided by Orbita.
• Senior Patient Engagement:Using Telehealth to Support Chronic Disease Self-Management : This case study explores how the “On4Care Mobile” solution from CAST Supporter Panasonic was used to monitor the health of 22 older adults who were clients of Pleasantville Senior Center in Pleasantville, NY.
• How telehealth is helping a provider to position itself as a partner to hospitals on avoiding readmission : This case study shows how Jewish Home Lifecare uses technology in all of its service lines and in all components of its Community Service Division. It is currently in the process of rolling out technology-enabled services in its sub-acute unit.
• Reduction of Hospital Readmissions through Telehealth among High-Risk Cardiac Patients : A new case study explores how Rockford Memorial Hospital in Rockford, IL, implemented a Heart & Vascular RPM program that helped reduce its readmission rates from 28% to 14% over 2 years.
• I mproving Medication Compliance, Quality of Life, and Peace of Mind through Voice Assistant Technology: Libertana Home Health in Sherman Oaks, CA implemented a voice assistance technology to improve medication compliance, quality of life, and peace of mind.   The voice assistance technology was provided by Orbita.
• TELEHEALTH AND REMOTE PATIENT MONITORING (RPM) – Provider Case Studies 2014:  Provider Case Studies 2014 was compiled to help a variety of organizations become familiar with real-life examples of telehealth implementation. The case studies also explore the impacts experienced by users of these technologies and the potential revenue streams and business models that support them
• CAST Case Study: Evangelical Homes of Michigan:  In July 2013, CAST Patron and LeadingAge Member Evangelical Homes of Michigan (EHM) learned about a newly formed, physician-based accountable care organization (ACO) called Northwest Ohio ACO during its conversations with Ohio Presbyterian Retirement Services (OPRS), a LeadingAge member in Columbus, OH.
• Medication Management Technologies PROVIDER CASE STUDIES 2015 : A set of 4 new case studies provides real-life examples of how providers implemented medication management technologies. One document in the collection summarizes the lessons learned from all the case studies.

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Care Home Life and Identity: A Qualitative Case Study

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Katie Paddock, Christine Brown Wilson, Catherine Walshe, Chris Todd, Care Home Life and Identity: A Qualitative Case Study, The Gerontologist , Volume 59, Issue 4, August 2019, Pages 655–664, https://doi.org/10.1093/geront/gny090

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The transition to a care home can involve multiple changes and losses that can affect an older person’s well-being and identity. It is not clear how older people perceive and manage their identity within a care home over time. This study explores how living in a care home affects the identities of residents and how they address this in their daily lives.

A multiple qualitative case study approach incorporated interview and observational data. Eighteen semistructured interviews and 260 hr of observations were conducted over 1 year with care home residents, relatives, and staff across three care homes within Greater Manchester, UK. Data were analyzed using framework analysis, drawing on the social identity perspective as an interpretive lens.

Four themes were identified: (a) changing with age, (b) independence and autonomy, (c) bounded identity, and (d) social comparison. The impact of aging that initially altered residents’ identities was exacerbated by the care home environment. Institutional restrictions jeopardized independence and autonomy, provoking residents to redefine this within the allowances of the care home. Strict routines and resource constraints of well-meaning staff resulted in the bounded expression of personalities. Consequently, to forge a positive identity, residents without dementia engaged in social comparison with residents with dementia, emphasizing their superior cognitive and physical abilities.

Social comparison as an adaptive strategy has previously been unidentified in care home literature. Residents need more support to express their identities, which may reduce the necessity of social comparison, and improve interrelationships and well-being.

Moving to long-term residential and/or nursing care facilities (hereafter referred to as “care homes”) involves a series of changes that can affect an older person’s sense of identity ( Froggatt, Davies, & Meyer, 2009 ; Næss, Fjær, & Vabø, 2016 ; Tajfel & Turner, 1979 ). Residents can become disconnected from facets or symbols of their identity, including social networks, familiar routines, recreational activities, and meaningful belongings. This disconnect can result in poor well-being or depression ( NCHR&D, 2006 ; Tester, Hubbard, Downs, MacDonald, & Murphy, 2004 ). In addition, the transition to a care home often occurs at the nadir of physical and/or cognitive abilities ( Kingston et al., 2017 ), thereby limiting residents’ functional abilities to adapt to this new context and increasing their reliance on care staff to facilitate identity maintenance. In England, supporting identities is a quality standard for care homes, but variations in care quality, limited resources, and poor workforce morale can impede such aims ( Alzheimer’s Society, 2013 ; Care Quality Commission, 2016 ; Lievesley, Crosby, Bowman, & Midwinter, 2011 ). To improve residents’ sense of identity in care homes, we must understand how it is negotiated within this complex context.

Few studies have explored the daily impact of life within care homes on identity, particularly from the perspectives of relevant stakeholders; residents, their significant others, and care home staff. In this article, we address this gap. We use the social identity perspective (SIP) as a theoretical lens to explore the strategies that residents use to adapt to life in a care home over time, and the daily contributions of others in the co-construction of residents’ identities.

SIP holds that individuals’ overall sense of identity is a composite of memberships to meaningful social groups (social identity) and idiosyncratic personal attributes (personal identity). Identity maintenance is an inherently social process that occurs across the life course, where different identities come to the fore within different salient contexts ( Hogg & Abrams, 1988 ; Oakes, Haslam, & Turner, 1994 ; Turner, 1982 ). Major life events, such as the transition to a care home, can disrupt connections to social groups and idiosyncratic attributes ( Hockey & James, 2003 ; NCHR&D, 2006 ; Kroger, Martinussen, & Marcia, 2010 ; Tajfel & Turner, 1979 ). Maintaining social relationships or establishing new connections buffers against negative outcomes ( A. Haslam, Jetten, Postmes, & Haslam, 2009 ; Jetten & Pachana, 2012 ), but studies have shown physical and interpersonal barriers to this ( Abbott, Bangerter, Humes, Klumpp, & Van Haitsma, 2017 ; Hubbard, Tester, & Downs, 2003 ), limiting opportunities to bolster identities within this new context.

Social groups are also judged by others as being of a higher or lower status, and the positivity of one’s identity is derived from the internalization of these evaluations ( Tajfel & Turner, 1979 ). Adaptive strategies can be used to maintain a positive identity when associated with a negatively perceived group ( Reicher, Spears, & Haslam, 2010 ; Tajfel, 1981 ; Tajfel & Turner, 1979 ). These include (a) social mobility: physically or psychologically leave the group and adopt a different identity; (b) social creativity: reframing the negativity as something positive, changing comparator dimensions to something more positive, or changing the comparison group to an even more negatively perceived group; and (c) social competition: direct competition with the outgroup. The use of these strategies will depend on the perceived permeability of the boundaries between groups. SIP, therefore, emphasizes the social- and context-dependent nature of identity.

SIP has been used in other social care areas ( Black et al., 2018 ; Iyer, Jetten, Tsivrikos, Postmes, & Haslam, 2009 ; Jetten & Pachana, 2012 ; Knight, Haslam, & Haslam, 2010 ), but it has been used much less frequently in care homes ( C. Haslam et al., 2014 ) and with little focus on the social- and context-dependent nature of identity from multiple perspectives. In this study, we use SIP to explore identity management within the care home context and incorporate the perspectives of residents, their relatives, and staff members. This will help inform approaches for supporting residents to maintain a positive sense of self and improve well-being, and improve their experiences of long-term care.

Study Design

This study used a multiple qualitative case study approach. Case study methodology facilitates the triangulation of multiple methods and sources of evidence to explore complex, context-dependent phenomena ( Walshe, Caress, Chew-Graham, & Todd, 2004 ; Yin, 2009 ), which is congruent with the inherently social and complex, context-dependent nature of identity management in SIP. Cases were defined as individual care homes. Within each case, data were collected using interview and observation methods (see below) to explore how daily life in a care home influences identity from multiple stakeholders’ perspectives.

The following theoretical propositions ( Yin, 2009 ), based on SIP and care home literature, were used to guide data collection and analysis:

Residents will renegotiate their identities within the context of the care home in light of new social relationships and interactions;

Maintaining links with previous social networks and habits (e.g., daily routines, personal décor) will be important for residents to maintain a sense of self; and

The care home environment will have the potential to accommodate a multitude of identities with adequate support from individuals and appropriate resources.

Within- and Cross-Case Sampling and Recruitment

Care homes in Greater Manchester, UK, were recruited through local research networks and via gatekeepers. Cases were purposefully sampled to vary in size (number of beds), location (high- or low-income areas), and building type (converted house or purpose-built facility). This aimed to acquire a broad range of experiences, and theoretical replication, where differing variables across cases are anticipated to yield contrasting results ( Yin, 2009 , 2010). The intended case sample was small to encourage rich, contextualized data, to understand the phenomenon under study ( Cleary, Horsfall, & Hayter, 2014 ; Geertz, 1973 ). Twenty-three care homes were approached to participate, and three care homes agreed. Table 1 illustrates basic information about the care homes.

Features of Participating Care Homes

Care home residents, family and friends, and staff, who met the following inclusion criteria, were eligible to participate: Residents aged 65 years or older, who had capacity to consent; all staff who had regular contact with residents, including managerial and nursing staff; all visitors who were a relative or long-term acquaintance of a resident (collectively termed “relatives” for ease). Staff identified residents with capacity to consent. Only individuals who could speak English were included, although only one resident was excluded by this constraint.

Prior to study commencement, the first author (K. Paddock) spent an introductory period within each care home. She introduced herself and the study, and engaged in informal conversations, to ensure that potential participants were comfortable with her presence and identified her as a researcher, not a visitor or staff member.

Convenience and purposeful techniques were used to sample residents, their relatives, and staff for interview. These included if residents/relatives had particularly positive or negative experiences of the move to a care home and subsequent adjustment or staff who were involved in daily decision making in the care homes or care of residents. Informed consent was obtained prior to recording of interviews. It was not possible to obtain written consent prior to observations due to the busy, often transient nature of care homes, and the risk of disrupting daily care or altering the dynamic of any event being observed. Information about the study and observations were displayed in each care home, and before each observation, individuals were verbally made aware of the researcher’s presence. Individuals could opt-out of observations via the researcher, members of staff, or opt-out form, and any field notes would then be excluded from analysis, an approach used elsewhere ( Conroy, 2017 ; Newnham, McKellar, & Pincombe, 2017 ). No individuals opted out.

Within-Case Methods: Data Collection

Semistructured topic guides were designed to provoke discussion of perceptions of the residents’ identity over their life course, their transition to the care home, and subsequent adjustment. Staff were asked for their perspectives on their roles in promoting identities within the care home, on perceived barriers and facilitators, and on residents’ adjustment over time. Questions included “Tell me about your move to the care home,” “What would you consider to be a ‘good’ day for you?” (Residents), “How would you describe [the resident]?”, “What would you consider to be meaningful activities for him/her?” (Relatives), “Tell me about a time a resident moved here,” “How do you incorporate individuality within the care home?” (Staff). Questions were developed iteratively to reflect emerging topics and themes.

Observations

All residents, staff, and relatives were eligible for inclusion in observations. Observations were exploratory and guided by SIP’s assertion that identities are influenced by social interactions and can be expressed externally, such as via hobbies and possessions. Observations and field notes focused on daily events in the care homes, including organized activities, daily care, and interactions between residents, staff, and visitors. Field notes also included conversations between participants and the first author. Residents without capacity to consent or opt-out were included in field notes for contextual purposes if they were central to observations involving other participants. Observations were a mixture of participatory and nonparticipatory: At times, the researcher remained a passive observer, but where possible she contributed informally to the daily life of the care homes by helping to serve meals and make drinks. This facilitated immersion in each care home and being allowed to witness personal care, such as dressing, an approach used in a similar context ( Næss et al., 2016 ). Observations occurred on different days and times of day, including evenings and weekends, to reduce the possibility that data were focused around particular activities or participants.

Data collection ceased once data saturation was reached, where no new findings emerge in subsequent data collection, within or across cases ( O’Reilly & Parker, 2012 ).

Data Analysis, Rigor, and Validity

Transcripts of recorded interviews and field notes were managed using NVivo and analyzed, within and cross-case, using framework analysis ( Ritchie & Spencer, 1994 ). This is a systematic and rigorous approach consisting of five interrelated stages (see Box 1 ), whereby iterative data collection and analysis of multiple data sources produce a transparent audit trail, so findings and interpretations are grounded in the data ( Gale, Heath, Cameron, Rashid, & Redwood, 2013 ; Ward, Furber, Tierney, & Swallow, 2013 ). The theoretical propositions derived from SIP (section Study Design) informed the preliminary coding framework, which was continuously reviewed in light of emergent data-driven codes and themes. Pattern-matching of data against a priori propositions reconciles the diverse perspectives of a phenomenon within and across cases ( Almutairi, Gardner, & McCarthy, 2014 ). Analysis generated a final analytic framework of 62 codes, grouped, and charted into four themes.

Familiarization

Immersion in the data. Read complete transcripts and field notes.

Identify a thematic framework

Initial development of a coding framework developed through a priori issues and familiarization stage.

The process of systematically applying the thematic framework to data. Changes made as necessary to reflect the data.

Using headings from thematic framework to create charts of data.

Mapping and interpretation

Searching for patterns and explanations in the data.

All data were collected by the first author (K. Paddock), who has prior experience working and researching in social care settings, but is not a clinician. She led data analysis, and regularly discussed emerging findings and experiences with the other three authors, two of whom (C. Brown Wilson and C. Walshe) are registered nurses with experience of working and researching in residential and social care.

Rigor and validity were ensured through the triangulation of multiple modes of data collection and sources of evidence across multiple cases, conducted over time. For respondent validation, the first author provided oral summaries of data and interpretations to participants, and invited comments.

To ensure reflexivity, the first author kept a reflexive diary alongside field notes to record her possible biases and role in shaping encounters. Developing a reflexive, iterative process between data collection and analysis continuously connected the data with emerging insights, leading to a more refined, and credible, understanding of identity ( Lincoln & Guba, 1985 ; Shenton, 2004 ; Srivastava & Hopwood, 2009 ).

Research Ethics Committee approval was obtained from the University of Manchester and Northampton NRES committee (reference number 12/EM/0431). All names have been changed to pseudonyms to protect anonymity. Permission was only granted by the ethics committees to interview residents with capacity to consent.

Semistructured interviews were conducted with 18 participants, and over 260 hr of observations were conducted over a 12-month period across the three cases (see Table 2 ). Interviews lasted between 18 min and 1.5 hr. The majority of residents across the care homes had severe dementia, so could not be interviewed. Some participants were intimidated by a recorded interview, and many staff were too busy, so preferred discussions to be included as field notes (see Table 2 ). Residents also received very few visitors during the data collection period.

Interview Sample and Observational Data Across Care Homes

Within-case analysis generated substantially similar experiences and themes in each care home, and thus, results from a cross-case analysis are presented, with any divergent themes discussed. The four interrelated themes are as follows:

Changing with age, and how this predated a move into a care home;

Bounded identity;

Independence and autonomy; and

Social comparisons.

Changing With Age

Prior to the relocation to a care home, residents and relatives acknowledged that increased frailty impeded residents’ abilities to perform everyday tasks and meaningful activities, which influenced their self-perception.

Ageing is a terrible thing . . . You can’t do what you used to do . . . (Hayley [resident], interview, Care Home 03)

Social networks and interactions gradually receded due to bereavements or family and friends moving away, which made residents feel disconnected and unable to be themselves:

I miss my people. Where are my people? They know who I am . . . (Philippa [resident], field notes, Care Home 02)

Residents adapted their homes, hobbies, and activities to accommodate these changes. For instance, Ruth (resident, Care Home 02) connected with her family and friends by knitting items for them, but her arthritis restricted her ability to hold knitting needles, so she began crocheting, which uses a different type of needles. This enabled Ruth to continue to make gifts and maintain a feeling of connectedness to important social networks.

The aging process had affected residents’ sense of self, but some had been able to employ strategies to help mitigate its impact. The care home further impeded their established identities and restricted residents’ abilities to adjust in a manner most acceptable to themselves.

Bounded Identity

Residents’ own homes served as a benchmark for the expression of their personal identities, particularly through possessions, clothing, and activities, but the care home environment largely restricted this.

Possessions

All participants agreed that personal possessions helped residents to express their personal and social identities and served as anchors to important memories.

When they wake up ‘til they go to sleep they have that sense of belonging. That this is my room now . . . I know that I bought that clock at such and such a place . . . and that picture there of my husband, that’s a reminder of me and my husband when I was younger . . . (Charlotte [staff, manager], interview, Care Home 02)

Staff emphasized that rooms could be personalized with furniture from home, but there was limited scope to do so because of the small size of most bedrooms. Residents had to relinquish many personal possessions, which upset them and their families, as this was associated with loss of important memories and symbols of identity. Julia (Care Home 01) had been a seamstress, her sewing machine a symbol of her independence, and an anchor for memories of her deceased husband. It was too large for the care home, and its loss signified the loss of important identities and memories:

. . . I’ll never operate the sewing machine again. It’s just the fact that [it’s in storage, not with her]. And it’s my past. (Julia [resident], interview, Care Home 01)

Residents across the care homes had little opportunity to acquire new possessions because there were infrequent visitors to support procurement. Staff typically focused on the occasional acquisition of practical items, such as underwear or toiletries. However, staff also stated that the minimal involvement of relatives made it difficult for them to learn about the preferences of residents with less communicative ability. There were anomalous instances where staff purchased meaningful items for residents, such as a stereo for a resident who loved music (Care Home 01), and jewelry in the color of a resident’s favorite football team (Care Home 02).

Residents and relatives often mentioned the importance of personal aesthetic. Residents admitted to the care home as an emergency had little input into which belongings they kept or relied on clothing borrowed from other residents or purchased by staff. Clothing was occasionally lost or mixed-up between residents, which upset residents and their relatives, who felt that an element of themselves had been stolen. This was particularly pertinent for relatives of residents with dementia, as they felt it highlighted their increased depersonalization and powerlessness:

It was like she was wearing part of me mum. (Amanda [relative], field notes, Care Home 02)

As care needs increased, staff in Care Homes 01 and 02 in particular tended to dress residents in looser-fitting, easy-to-change and easy-to-clean clothes, or “babywear” ( Twigg and Buse, 2013 : 330), regardless of the individual’s personal aesthetic. However, there were notable examples across each care home of staff making an effort to incorporate residents’ preferences in their daily care, typically in relation to colors, or whether someone was a “skirt person” or a “trouser person”:

. . . Joanna [staff], said that it’s ‘a bit of a faff’ getting them in and out of trousers, “but it’s what they prefer” . . . (Field notes, Care Home 03)

Residents derived a sense of self through their hobbies and activities. Staff in each care home initially claimed to incorporate residents’ preferences, but during observations, this rarely occurred. Staff felt constrained by understaffing and limited resources and unable to support residents’ identities and individuality. Consequently, there were few activities overall, and observed activities were based on generalizations to please the most people and did not account for nuanced preferences. These included a music-themed reminiscence group, tai chi (Care Home 01), bingo, and a “memory man” who discussed local history (Care Home 02):

. . . let’s say someone’s gay, and like to go to gay bars, and would like to meet gay people, erm, for example. Um, or let’s say someone’s Caribbean and they like to go to Caribbean clubs . . . I find they kind of take the headline title [of residents’ preferences] and that’s about it. (Adam [staff], interview, Care Home 01)

This approach did not satisfy most residents and relatives, who complained about a lack of stimulation and false promises of individualized activities.

I mean, Tracey [manager] said that they did lots of things in the afternoon, and I’ve never been convinced they’ve done as many as Tracey said they did. (Daniel [relative], interview, Care Home 01)

Residents and relatives acknowledged the financial constraints of many care homes, but felt more could be done to improve daily life. Staff also highlighted difficulties of organizing activities for residents with physical and cognitive impairments:

. . . It’s hard to think of where they can go really. You got to think about where they’re going to go to the toilet and everything—so there’s loads to think about before you even take them out. (Laura [staff], interview, Care Home 02)

Participants in Care Home 03 mentioned plans of a daytrip, but none occurred during the data collection period. However, in Care Home 03, some residents attended a weekly church fete unchaperoned; a luxury they valued. Across all three care homes, television was the most common activity observed. There were limited opportunities for residents to suggest ad hoc activities beyond the immediate resources of the care homes.

Independence and Autonomy

Residents and their relatives frequently emphasized the importance of independence as an element of residents’ identities throughout their life course, and evidenced this in a variety of ways. For instance, Carrie (Care Home 02) was an international fashion buyer; Mary (Care Home 02) attended football matches “with the boys,” which was considered unusual at the time; Richard (Care Home 03) was a freelance photographer.

Repeated reflections on their independence highlighted its absence in the care home. Residents missed the freedom to set their own agendas for the day. The care homes all adopted similar routines: set times for waking residents and putting them to bed, for food and drink, and any activities. Staff discouraged deviations from these routines as it jeopardized the smooth running of the care home. Residents felt that minor changes to routines were occasionally catered for, but at a compromise; Louis (resident, Care Home 03) had requested to sleep in one day, but was then allegedly denied his breakfast as the allotted breakfast time had passed and staff were busy elsewhere. Participants’ perceptions of how successful these allowances and compromises were in practice differed:

Well Ruth (resident) likes to get up really early—Ruth likes to get up at like quarter to seven. . . . So—like when they first come [to the care home], you ask them, like what they like to do . . . (Laura [staff], interview, Care Home 02) I like to get up early. But I have to wait for the nurse [to get me up]. (Ruth [resident], interview, Care Home 02)

Strict health and safety policies and organizational efficiency meant risk-averse staff tended to complete minor tasks themselves, such as making hot drinks, which undermined residents’ independence. The role of staff as carers seemed at odds with the expectation that they should also facilitate independence, particularly because of limited resources:

. . . It’s all well and good saying they want to remain independent, but if you can’t walk, you can’t walk . . . It is our job at the end of the day—to keep them well . . . (Edna [staff], field notes, Care Home 02)

To counter the negative perceptions of aging and increased dependency, many residents amended their definitions of independence and autonomy to emphasize minor daily tasks and accomplishments. Autonomy within the care home was limited to small day-to-day decisions, such as choosing a meal from the available selection, requesting an alternative meal where possible, or deciding when to go to bed if they were physically able to do so unaided. Physical independence to perform certain small tasks such as setting tables at mealtimes, usually authorized by staff, helped residents to feel as though they had retained an important element of their personal identities:

Catherine . . . helped to place the cutlery on the tables . . . and added “I know I’m not completely independent anymore. But it’s something” . . . (Catherine [resident], field notes, Care Home 01)

Each care home had members of staff who made a conscious effort to accommodate residents’ autonomous decision making and individual preferences. A notable example involved Edna’s (staff, Care Home 02) determination to allow a resident a “duvet day,” who uncharacteristically wanted to stay in bed. These infrequent instances encouraged residents to express their individuality, and made them feel more in control of their surroundings and their care. With residents’ new perceptions of independence and autonomy largely based on physical capabilities, this enabled them to use levels of cognition as a source of comparison against other residents who experienced dementia or mental health problems.

Social Comparison

Residents without dementia accepted that moving to a care home was necessary because of their care needs, but felt their positive sense of identity was jeopardized because of the association of care homes with severe cognitive and physical impairment. Residents with dementia represented these negative stereotypes, and symbolized the worst aspects of aging. Consequently, residents without dementia distanced themselves from residents with dementia by engaging in social comparison. They regularly pointed out those with dementia and emphasized their own perceived cognitive superiority, while also expressing sympathy and frustration over the often repetitive or disruptive behaviors associated with severe dementia. Such downward social comparisons serve to enhance self-image and in turn improve well-being ( Gibbons & Gerrard, 1991 ):

[Philippa] was looking at the row of residents sat asleep against the wall . . . “Most of these have lost their minds, you know . . . I can still think for myself. I haven’t gone yet” . . . (Philippa [resident], field notes, Care Home 02)

Residents without dementia typically vocalized their comparisons with members of staff, visitors, or the researcher; not with one another. Only two residents in Care Homes 01 and 03 indicated that they were friends and regularly conversed. Most residents suggested they were lonely, but did not converse with others beyond mealtimes. Although residents stated they were unable to hold meaningful social interactions with residents with dementia, it was difficult to determine why residents without dementia did not engage more with one another. Some participants, particularly staff, suggested residents may not wish to invest in making connections with others because they are acutely aware of their own mortality. When asked, residents said that they simply did not like the other residents, or that it was a lot of effort, especially if they were at risk of developing dementia.

I asked Elizabeth why she didn’t chat to Carrie more . . . after they seemed to have a nice time the other day . . . Elizabeth pulled a face and after a pause said “she’ll probably end up like the rest of ‘em in here . . .” (Field notes, Care Home 02)

The purpose of this study was to explore how life in a care home affects on the identities of care homes residents. The use of SIP offers a broad approach to identity that highlights the importance of context-bound social interactions for the development and maintenance of identity within the unique context of a care home. At the outset of the study, we proposed three theoretical propositions. In relation to these propositions, our findings reveal that (a) residents renegotiate their identities within the context of the care home, but use social interactions to facilitate social comparison with more impaired individuals, while largely failing to establish new relationships; (b) care homes have the potential to accommodate a multitude of identities by facilitating links with previous social networks or symbols that are necessary to maintain a sense of self, (c) but lack adequate support or appropriate resources to achieve this. We now discuss these findings in detail, followed by their implications.

Findings confirm the role of activities, possessions, and clothing, in symbolizing identities, particularly in light of personal and physical loss. Continued identification with such meaningful symbols help to bolster identity, even for individuals with limited expressive capacity, and can be maintained through adapted ways of living ( Black et al., 2018 ; Cohen-Mansfield, Marx, Thein, & Dakheel-Ali, 2010 ; Lloyd, Calnan, Cameron, Seymour, & Smith, 2014 ). But for participants in the present study, the care home environment undermined their abilities to adapt, disrupting connections to many important symbols, and resulting in a limited, bounded expression of residents’ identities.

Institutional restrictions, standardized routines, and strict risk management also threatened residents’ independence and autonomy, as perceived staff shortages and limited resources necessitated the precedence of organizational efficiency over individual needs. It has been established that a failure to satisfy needs for independence and autonomy is related to depressive symptoms and poor well-being and also hinders individuality and the expression of personalities ( Custers, Westerhof, Kuin, Gerritsen, & Riksen-Walraven, 2012 ; Goffman, 1961 ; A. Haslam et al., 2009 ; Knight et al., 2010 ; Wiersma & Dupuis, 2010 ; Kloos, Trompetter, Bohlmeijer, & Westerhof, 2018 ). Consistent with other studies ( Falk, Wijk, Persson, & Falk, 2013 ; Golander, 1995 ; Wiersma & Dupuis, 2010 ), participants in the present study reported an “emotional limbo” between the awareness of residents’ increased care needs and dependency on staff, and the importance of independence to residents’ identities. Our findings show that this motivates residents to emphasize their physical abilities to perform small tasks, to reconcile their established identities within a new, more constrained context.

Maintaining links with social networks or establishing new identity-relevant connections is also necessary to reinforce a sense of self and to buffer against a threatened identity or well-being ( Cohen-Mansfield, Golander, & Arnheim, 2000 ; A. Haslam et al., 2009 ; Surr, 2006 ). Relatives have the potential to support residents’ identity and improve resident outcomes by maintaining relationships with them and with staff ( Davies & Nolan, 2006 ; Roberts & Ishler, 2017 ), but most residents in the present study had little contact anyone outside of the care home and thus were unable to maintain identity-affirming connections. However, residents did not appear to value the opportunity to develop friendships with one another, as has been described elsewhere ( Surr, 2006 ; Tester et al., 2004 ). Rather, our findings resonate with those of Abbott and colleagues (2017) , where residents cited various barriers to social interactions with others, but participants in the present study focused on cognitive impairment as the fundamental obstacle. The fact that most older people residing in the care homes of the present study had a diagnosis of dementia reflects the national statistics of the United Kingdom on levels of impairment in care homes ( Alzheimer’s Society, 2014 ). But the belief among unimpaired residents that residents with dementia, particularly those who also had severe physical impairments, were not viable companions and should be avoided, reflects a more complex issue relating to threatened identities.

According to SIP, psychological strategies such as social competition, social creativity, and social mobility can be used to protect a threatened identity ( Reicher et al., 2010 ; Tajfel, 1981 ; Tajfel & Turner, 1979 ). The present study has shown that by highlighting the impairments of others and emphasizing their own abilities, residents without dementia used social creativity, specifically social comparison, as a means of cognitive adaptation. With little consistent opportunity to buffer identities through other means, social comparison and the motivation to distance oneself from impairment may have also served to alienate residents from one another who could have formed meaningful relationships, whether cognitively impaired or otherwise.

Implications

Although global policy states that care provision should enable self-expression and identity, the ability to make choices, and to maintain connections with social networks ( World Health Organisation, 2015 ), our findings suggest that such goals are difficult to achieve in the care home setting. Few visitors and opportunities to maintain connections outside of the care home place greater pressure on staff to perform identity work. To move forward, we need to understand how guidelines or training on identity is implemented in care homes and how this may be improved. In addition, further research on how residents can maintain connections outside of the care home is needed.

Staffing and resource constraints cannot be easily rectified, but care homes could facilitate residents’ needs within the allowances of their means. This study has demonstrated the value of seemingly minor, but meaningful, interactions between stakeholders, small changes to routines, and supported independence and autonomy. Evidence suggests that interventions to facilitate group-based decision making among care home residents regarding the refurbishment of communal areas created a shared identification, increased social engagement, and improved cognitive function and life satisfaction ( C. Haslam et al., 2014 ). Future interventions could support residents to make collective decisions in other, smaller areas of care home life, such as weekly activities or menu choices. This can promote positive social interaction among stakeholders and improve feelings of independence and autonomy, thereby minimizing the necessity for some residents to distance themselves from others. An assessment of such interventions versus standard practice, focusing on the cost implications and impact on staff workload, can help to determine their feasibility in under-resourced facilities.

Strengths and Limitations

This study is the only U.K.-based study to date that has used observational and interview methods across care homes with SIP. A key strength is the volume of data collected: Over 260 hr of observations across 1 year, combined with iterative interviews, facilitated in-depth exploration of context-bound data to understand the phenomenon of identity management over time. SIP has contributed to other social care areas, and its use in the care home setting helped to uncover and explore psychological strategies used by residents to cope and maintain a positive sense of self.

We only interviewed residents who had capacity to consent, which limits the generalizability of the findings. Future observational studies are needed that includes the perspectives of all care home residents. Furthermore, recruitment of care homes proved difficult. Managers were concerned with the potential distraction for staff or suggested the study had duplicitous aims in light of contemporaneous negative media representations of care homes. Although sampling was purposeful, no purpose-built care homes agreed to participate. There were also very few visitors across each care home, resulting in a small sample of relatives interviewed. Although this may limit generalizability, it is nonetheless an artifact of each case and serves to highlight the contemporaneous issues of maintaining relationships, and in turn identity, in care homes.

This study explored how life in a care home affects residents’ identities. The use of SIP within a multiple case study design, with interview and observational methods, is unique in care home research. Although moving to a care home initially emphasized age-related changes, institutional restrictions and limited social networks further undermined residents’ identities over time. The use of social comparison by residents without dementia served to buffer against daily threats to identity, in particular, the threat of being considered severely cognitively impaired and lacking independence. Resource constraints can make it difficult to adequately support diverse identities, yet even small changes to routines and daily care can help. Adequate resources and support within care homes can facilitate the expression of positive identities. This may reduce the need for staunch social comparison and create a more constructive environment for all residents, which may in turn improve well-being.

This study was funded by Medical Research Council doctoral studentship award for K. Paddock. Grant reference MR/J500410/1.

None reported.

Abbott , K. M. , Bangerter , L. R. , Humes , S. , Klumpp , R. , & Van Haitsma , K . ( 2017 ). “It’s important, but…”: Perceived barriers and situational dependencies to social contact preferences of nursing home residents . The Gerontologist , 00, 1–10. doi: 10.1093/geront/gnx109

Google Scholar

Almutairi , A. F. , Gardner , G. E. , & McCarthy , A . ( 2014 ). Practical guidance for the use of a pattern-matching technique in case-study research: A case presentation . Nursing & Health Sciences , 16 , 239 – 244 . doi: 10.1111/nhs.12096

Alzheimer’s Society . ( 2013 ). Low expectations: Attitudes on choice, care and community for people with dementia in care homes . London : Author .

Alzheimer’s Society . ( 2014 ). What is dementia? (Factsheet 400LP. The Information Standard). Retrieved from www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=106

Black , H. K. , Rubinstein , R. L. , Frankowski , A. C. , Hrybyk , G. , Nemec , M. , & Tucker , G. G . ( 2018 ). Identity, semiotics, and use of symbols in adult day services . The Gerontologist , 58, 730–738. doi: 10.1093/geront/gnx074

Care Quality Commission . ( 2016 ). The state of health care and adult social care in England 2015/16 . Retrieved from http://www.cqc.org.uk/content/state-of-care

Cleary , M. , Horsfall , J. , & Hayter , M . ( 2014 ). Data collection and sampling in qualitative research: Does size matter ? Journal of Advanced Nursing , 70 , 473 – 475 . doi: 10.1111/jan.12163

Cohen-Mansfield , J. , Golander , H. , & Arnheim , G . ( 2000 ). Self-identity in older persons suffering from dementia: Preliminary results . Social Science & Medicine , 51 , 381 – 394 . doi: 10.1016/S0277-9536(99)00471-2

Cohen-Mansfield , J. , Marx , M. S. , Thein , K. , & Dakheel-Ali , M . ( 2010 ). The impact of past and present preferences on stimulus engagement in nursing home residents with dementia . Aging & Mental Health , 14 , 67 – 73 . doi: 10.1080/13607860902845574

Conroy , T . ( 2017 ). A beginner’s guide to ethnographic observation in nursing research . Nurse Researcher , 24 , 10 – 14 . doi: 10.7748/nr.2017.e1472

Custers , A. F. , Westerhof , G. J. , Kuin , Y. , Gerritsen , D. L. , & Riksen-Walraven , J. M . ( 2012 ). Relatedness, autonomy, and competence in the caring relationship: The perspective of nursing home residents . Journal of Aging Studies , 26 , 319 – 326 . doi: 10.1016/j.jaging.2012.02.005

Davies , S. , & Nolan , M . ( 2006 ). ‘Making it better’: Self-perceived roles of family caregivers of older people living in care homes: A qualitative study . International Journal of Nursing Studies , 43 , 281 – 291 . doi: 10.1016/j.ijnurstu.2005.04.009

Falk , H. , Wijk , H. , Persson , L. O. , & Falk , K . ( 2013 ). A sense of home in residential care . Scandinavian Journal of Caring Sciences , 27 , 999 – 1009 . doi: 10.1111/scs.12011

Froggatt , K. , Davies , S. , & Meyer , J . ( 2009 ). Understanding care homes: A research and development perspective . Jessica Kingsley Publishers .

Gale , N. K. , Heath , G. , Cameron , E. , Rashid , S. , & Redwood , S . ( 2013 ). Using the framework method for the analysis of qualitative data in multi-disciplinary health research . BMC Medical Research Methodology , 13 , 117 . doi: 10.1186/1471-2288-13-117

Geertz , C . ( 1973 ). Thick description: Toward an interpretive theory of culture . In C. Geertz (Ed.), The interpretation of cultures: Selected essays (pp. 3 – 30 ). New York : Basic Books, Inc., Publishers .

Google Preview

Gibbons , F. X. , & Gerrard , M . ( 1991 ). Downward social comparison and coping with threat . In J. M. Suls & T. A. Wills (Eds.), Social comparison: Theory and research (pp. 317 – 345 ). Hillside, NJ : Lawrence Erlbaum .

Goffman , E . ( 1961 ). Asylums: Essays on the social situation of mental patients and other inmates . London : Penguin .

Golander , H . ( 1995 ). Chronically ill, old, and institutionalized: Being a nursing home resident . Family & Community Health , 17 , 63 – 79 . doi: 10.1097/00003727-199501000-00008

Haslam , C. , Alexander Haslam , S. , Knight , C. , Gleibs , I. , Ysseldyk , R. , & McCloskey , L. G . ( 2014 ). We can work it out: Group decision-making builds social identity and enhances the cognitive performance of care residents . British Journal of Psychology , 105 , 17 – 34 . doi: 10.1111/bjop.12012

Haslam , A. , Jetten , J. , Postmes , T. , & Haslam , C . ( 2009 ). Social identity, health, and well-being: An emerging agenda for applied psychology . Applied Psychology , 58 , 1 – 23 . doi: 10.1111/j.1464-0597.2008.00379.x

Hockey , J. , & James , A . ( 2003 ). Social identities across the life course . Basingstoke : Palgrave Macmillan .

Hogg , M. , & Abrams , D . ( 1988 ). Social identifications: A social psychology of intergroup relations and group processes . London : Routledge .

Hubbard , G. , Tester , S. , & Downs , M. G . ( 2003 ). Meaningful social interactions between older people in institutional care settings . Ageing and Society , 23 , 99 – 114 . doi: 10.1017/S0144686X02008991

Iyer , A. , Jetten , J. , Tsivrikos , D. , Postmes , T. , & Haslam , S. A . ( 2009 ). The more (and the more compatible) the merrier: Multiple group memberships and identity compatibility as predictors of adjustment after life transitions . The British Journal of Social Psychology , 48 ( Pt. 4 ), 707 – 733 . doi: 10.1348/014466608X397628

Jetten , J. , & Pachana , N. A . ( 2012 ). Not wanting to grow old: A social identity model of identity change (SIMIC) analysis of driving cessation among older adults . In J. Jetten , C. Haslam , & A. S. Haslam (Eds.), The social cure: Identity, health and well-being . East Sussex, UK : Psychology Press .

Kingston , A. , Wohland , P. , Wittenberg , R. , Robinson , L. , Brayne , C. , Matthews , F. E. , … Jagger , C .; Cognitive Function and Ageing Studies Collaboration . ( 2017 ). Is late-life dependency increasing or not? A comparison of the Cognitive Function and Ageing Studies (CFAS) . The Lancet , 390 , 1676 – 1684 . doi: 10.1016/S0140-6736(17)31575-1

Kloos , N. , Trompetter , H. R. , Bohlmeijer , E. T. , & Westerhof , G. J . ( 2018 ). Longitudinal associations of autonomy, relatedness, and competence with the well-being of nursing home residents . The Gerontologist , 00, 1–9. doi: 10.1093/geront/gny005

Knight , C. , Haslam , A. , & Haslam , C . ( 2010 ). In home or at home? How collective decision making in a new care facility enhances social interaction and wellbeing amongst older adults . Ageing & Society , 30 , 1393 – 1418 . doi: 10.1017/S0144686X10000656

Kroger , J. , Martinussen , M. , & Marcia , J. E . ( 2010 ). Identity status change during adolescence and young adulthood: A meta-analysis . Journal of Adolescence , 33 , 683 – 698 . doi: 10.1016/j.adolescence.2009.11.002

Lievesley , N. , Crosby , G. , Bowman , C. , & Midwinter , E . ( 2011 ). The changing role of care homes . BUPA and Centre for Policy on Ageing. Retrieved from http://www.cpa.org.uk/information/reviews/changingroleofcarehomes.pdf (accessed December 20, 2015).

Lincoln , Y. S. , & Guba , E. G . ( 1985 ). Naturalistic inquiry . Newbury Park, CA : Sage .

Lloyd , L. , Calnan , M. , Cameron , A. , Seymour , J. , & Smith , R . ( 2014 ). Identity in the fourth age: Perseverance, adaptation and maintaining dignity . Ageing & Society , 34 , 1 – 19 . doi: 10.1017/S0144686X12000761

Næss , A. , Fjær , E. G. , & Vabø , M . ( 2016 ). The assisted presentations of self in nursing home life . Social Science & Medicine , 150 ( Suppl. C ), 153 – 159 . doi: 10.1016/j.socscimed.2015.12.027

NCHR&D . ( 2006 ). My home life: Quality of life in care homes . Retrieved from http://myhomelife.org.uk/wp-content/uploads/ 2014/11/mhl_report.pdf

Newnham , E. C. , McKellar , L. V. , & Pincombe , J. I . ( 2017 ). Paradox of the institution: Findings from a hospital labour ward ethnography . BMC Pregnancy and Childbirth , 17 , 2 . doi: 10.1186/s12884-016-1193-4

Oakes , P. J. , Haslam , A. , & Turner , J. C . ( 1994 ). Stereotyping and social reality . Oxford, England : Blackwell .

O’Reilly , M. , & Parker , N . ( 2012 ). ‘Unsatisfactory Saturation’: A critical exploration of the notion of saturated sample sizes in qualitative research . Qualitative Research , 13 , 190 – 197 . doi: 10.1177/1468794112446106

Reicher , S. D. , Spears , R. , & Haslam , A . ( 2010 ). The social identity approach in social psychology . In M. Wetherell & C. T. Mohanty (Eds.), Sage identities handbook (pp. 45–62). London : Sage .

Ritchie , J. , & Spencer , L . ( 1994 ). Qualitative data analysis for applied policy research . In A. Bryman & R. G. Burgess (Eds.), Analyzing qualitative data (pp. 173 – 194 ). London : Routledge .

Roberts , A. R. , & Ishler , K. J . ( 2017 ). Family involvement in the nursing home and perceived resident quality of life . The Gerontologist , 00, 1–11. doi: 10.1093/geront/gnx108

Shenton , A . ( 2004 ). Strategies for ensuring trustworthiness in qualitative research projects . Education for Information , 22 , 63 – 75 . doi: 10.3233/EFI-2004-22201

Srivastava , P. , & Hopwood , N . ( 2009 ). A practical iterative framework for qualitative data analysis . International Journal of Qualitative Methods , 8 , 76 – 84 . doi: 10.1177/160940690900800107

Surr , C. A . ( 2006 ). Preservation of self in people with dementia living in residential care: A socio-biographical approach . Social Science & Medicine , 62 , 1720 – 1730 . doi: 10.1016/j.socscimed.2005.08.025

Tajfel , H . ( 1981 ). Human groups and social categories: Studies in social psychology . Cambridge : Cambridge University Press .

Tajfel , H. , & Turner , J . ( 1979 ). An integrative theory of intergroup conflict . In W. G. Austin & S. Worchel (Eds.), The social psychology of intergroup relations (pp. 33–37). Monterey, CA : Brooks-Cole .

Tester , S. , Hubbard , G. , Downs , M. , MacDonald , C. , & Murphy , J . ( 2004 ). What does quality of life mean for frail residents ? Nursing and Residential Care , 6 , 89 – 92 . doi: 10.12968/nrec.2004.6.2.12052

Turner , J. C . ( 1982 ). Towards a cognitive redefinition of the social group . In H. Tajfel (Ed.), Social identity and intergroup relations (Vol. 1 , pp. 15 – 40 ). Cambridge : Cambridge University Press .

Twigg , J. , & Buse , C. E . ( 2013 ). Dress, dementia and the embodiment of identity . Dementia , 12 , 326 – 336 . doi: 10.1177/1471301213476504

Walshe , C. E. , Caress , A. L. , Chew-Graham , C. , & Todd , C. J . ( 2004 ). Case studies: A research strategy appropriate for palliative care ? Palliative Medicine , 18 , 677 – 684 . doi: 10.1191/0269216304pm962ra

Ward , D. J. , Furber , C. , Tierney , S. , & Swallow , V . ( 2013 ). Using Framework Analysis in nursing research: A worked example . Journal of Advanced Nursing , 69 , 2423 – 2431 . doi: 10.1111/jan.12127

Wiersma , E. , & Dupuis , S. L . ( 2010 ). Becoming institutional bodies: Socialization into a long-term care home . Journal of Aging Studies , 24 , 278 – 291 . doi: 10.1016/j.jaging.2010.08.003

World Health Organisation . ( 2015 ). World report on ageing and health . Retrieved from http://apps.who.int/iris/bitstream/handle/10665/186463/9789240694811_eng.pdf?sequence=1

Yin , R. K . ( 2009 ). Case study research: Design and methods (Vol. 5 ). London : Sage .

Yin , R. K . ( 2010 ). Qualitative research from start to finish . New York : Guilford Press .

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Hidden Owners, Hidden Profits, and Poor Nursing Home Care: A Case Study

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• 1 University of California, San Francisco, CA, USA [email protected].
• 2 University of California, San Francisco, CA, USA.
• PMID: 26159173
• DOI: 10.1177/0020731415594772

The study examined the ownership transparency, financial accountability, and quality indicators of a regional for-profit nursing home chain in California, using a case study methodology to analyze data on the chain's ownership and management structure, financial data, staffing levels, deficiencies and complaints, and litigation. Secondary data were obtained from regulatory and cost reports and litigation cases. Qualitative descriptions of ownership and management were presented and quantitative analyses were conducted by comparing financial and quality indicators with other California for-profit chains, for-profit non-chains, and nonprofit nursing home groups in 2011. The chain's complex, interlocking individual and corporate owners and property companies obscured its ownership structure and financial arrangements. Nursing and support services expenditures were lower than nonprofits and administrative costs were higher than for-profit non-chains. The chain's nurse staffing was lower than expected staffing levels; its deficiencies and citations were higher than in nonprofits; and a number of lawsuits resulted in bankruptcy. Profits were hidden in the chain's management fees, lease agreements, interest payments to owners, and purchases from related-party companies. Greater ownership transparency and financial accountability requirements are needed to ensure regulatory oversight and quality of care.

Keywords: accountability; nursing homes; ownership; profits; transparency.

© The Author(s) 2015.

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Care Home Life and Identity: A Qualitative Case Study

Katie paddock.

1 School of Health Sciences, Faculty of Biology, Medicine and Health, Division of Nursing, Midwifery and Social Work, University of Manchester, UK

2 Manchester Academic Health Science Centre, UK

6 Psychological Sciences, Institute of Psychology, Health, and Society, University of Liverpool, Liverpool, UK

Christine Brown Wilson

3 School of Nursing and Midwifery, Queen’s University, Belfast, UK

Catherine Walshe

4 International Observatory on End of Life Care, Division of Health Research, Furness Building, Lancaster University, UK

5 Manchester University Foundation NHS Foundation Trust, UK

Background and Objectives

The transition to a care home can involve multiple changes and losses that can affect an older person’s well-being and identity. It is not clear how older people perceive and manage their identity within a care home over time. This study explores how living in a care home affects the identities of residents and how they address this in their daily lives.

Research Design and Methods

A multiple qualitative case study approach incorporated interview and observational data. Eighteen semistructured interviews and 260 hr of observations were conducted over 1 year with care home residents, relatives, and staff across three care homes within Greater Manchester, UK. Data were analyzed using framework analysis, drawing on the social identity perspective as an interpretive lens.

Four themes were identified: (a) changing with age, (b) independence and autonomy, (c) bounded identity, and (d) social comparison. The impact of aging that initially altered residents’ identities was exacerbated by the care home environment. Institutional restrictions jeopardized independence and autonomy, provoking residents to redefine this within the allowances of the care home. Strict routines and resource constraints of well-meaning staff resulted in the bounded expression of personalities. Consequently, to forge a positive identity, residents without dementia engaged in social comparison with residents with dementia, emphasizing their superior cognitive and physical abilities.

Discussion and Implications

Social comparison as an adaptive strategy has previously been unidentified in care home literature. Residents need more support to express their identities, which may reduce the necessity of social comparison, and improve interrelationships and well-being.

Moving to long-term residential and/or nursing care facilities (hereafter referred to as “care homes”) involves a series of changes that can affect an older person’s sense of identity ( Froggatt, Davies, & Meyer, 2009 ; Næss, Fjær, & Vabø, 2016 ; Tajfel & Turner, 1979 ). Residents can become disconnected from facets or symbols of their identity, including social networks, familiar routines, recreational activities, and meaningful belongings. This disconnect can result in poor well-being or depression ( NCHR&D, 2006 ; Tester, Hubbard, Downs, MacDonald, & Murphy, 2004 ). In addition, the transition to a care home often occurs at the nadir of physical and/or cognitive abilities ( Kingston et al., 2017 ), thereby limiting residents’ functional abilities to adapt to this new context and increasing their reliance on care staff to facilitate identity maintenance. In England, supporting identities is a quality standard for care homes, but variations in care quality, limited resources, and poor workforce morale can impede such aims ( Alzheimer’s Society, 2013 ; Care Quality Commission, 2016 ; Lievesley, Crosby, Bowman, & Midwinter, 2011 ). To improve residents’ sense of identity in care homes, we must understand how it is negotiated within this complex context.

Few studies have explored the daily impact of life within care homes on identity, particularly from the perspectives of relevant stakeholders; residents, their significant others, and care home staff. In this article, we address this gap. We use the social identity perspective (SIP) as a theoretical lens to explore the strategies that residents use to adapt to life in a care home over time, and the daily contributions of others in the co-construction of residents’ identities.

SIP holds that individuals’ overall sense of identity is a composite of memberships to meaningful social groups (social identity) and idiosyncratic personal attributes (personal identity). Identity maintenance is an inherently social process that occurs across the life course, where different identities come to the fore within different salient contexts ( Hogg & Abrams, 1988 ; Oakes, Haslam, & Turner, 1994 ; Turner, 1982 ). Major life events, such as the transition to a care home, can disrupt connections to social groups and idiosyncratic attributes ( Hockey & James, 2003 ; NCHR&D, 2006 ; Kroger, Martinussen, & Marcia, 2010 ; Tajfel & Turner, 1979 ). Maintaining social relationships or establishing new connections buffers against negative outcomes ( A. Haslam, Jetten, Postmes, & Haslam, 2009 ; Jetten & Pachana, 2012 ), but studies have shown physical and interpersonal barriers to this ( Abbott, Bangerter, Humes, Klumpp, & Van Haitsma, 2017 ; Hubbard, Tester, & Downs, 2003 ), limiting opportunities to bolster identities within this new context.

Social groups are also judged by others as being of a higher or lower status, and the positivity of one’s identity is derived from the internalization of these evaluations ( Tajfel & Turner, 1979 ). Adaptive strategies can be used to maintain a positive identity when associated with a negatively perceived group ( Reicher, Spears, & Haslam, 2010 ; Tajfel, 1981 ; Tajfel & Turner, 1979 ). These include (a) social mobility: physically or psychologically leave the group and adopt a different identity; (b) social creativity: reframing the negativity as something positive, changing comparator dimensions to something more positive, or changing the comparison group to an even more negatively perceived group; and (c) social competition: direct competition with the outgroup. The use of these strategies will depend on the perceived permeability of the boundaries between groups. SIP, therefore, emphasizes the social- and context-dependent nature of identity.

SIP has been used in other social care areas ( Black et al., 2018 ; Iyer, Jetten, Tsivrikos, Postmes, & Haslam, 2009 ; Jetten & Pachana, 2012 ; Knight, Haslam, & Haslam, 2010 ), but it has been used much less frequently in care homes ( C. Haslam et al., 2014 ) and with little focus on the social- and context-dependent nature of identity from multiple perspectives. In this study, we use SIP to explore identity management within the care home context and incorporate the perspectives of residents, their relatives, and staff members. This will help inform approaches for supporting residents to maintain a positive sense of self and improve well-being, and improve their experiences of long-term care.

Study Design

This study used a multiple qualitative case study approach. Case study methodology facilitates the triangulation of multiple methods and sources of evidence to explore complex, context-dependent phenomena ( Walshe, Caress, Chew-Graham, & Todd, 2004 ; Yin, 2009 ), which is congruent with the inherently social and complex, context-dependent nature of identity management in SIP. Cases were defined as individual care homes. Within each case, data were collected using interview and observation methods (see below) to explore how daily life in a care home influences identity from multiple stakeholders’ perspectives.

The following theoretical propositions ( Yin, 2009 ), based on SIP and care home literature, were used to guide data collection and analysis:

• Residents will renegotiate their identities within the context of the care home in light of new social relationships and interactions;
• Maintaining links with previous social networks and habits (e.g., daily routines, personal décor) will be important for residents to maintain a sense of self; and
• The care home environment will have the potential to accommodate a multitude of identities with adequate support from individuals and appropriate resources.

Within- and Cross-Case Sampling and Recruitment

Care homes in Greater Manchester, UK, were recruited through local research networks and via gatekeepers. Cases were purposefully sampled to vary in size (number of beds), location (high- or low-income areas), and building type (converted house or purpose-built facility). This aimed to acquire a broad range of experiences, and theoretical replication, where differing variables across cases are anticipated to yield contrasting results ( Yin, 2009 , 2010). The intended case sample was small to encourage rich, contextualized data, to understand the phenomenon under study ( Cleary, Horsfall, & Hayter, 2014 ; Geertz, 1973 ). Twenty-three care homes were approached to participate, and three care homes agreed. Table 1 illustrates basic information about the care homes.

Features of Participating Care Homes

Care home residents, family and friends, and staff, who met the following inclusion criteria, were eligible to participate: Residents aged 65 years or older, who had capacity to consent; all staff who had regular contact with residents, including managerial and nursing staff; all visitors who were a relative or long-term acquaintance of a resident (collectively termed “relatives” for ease). Staff identified residents with capacity to consent. Only individuals who could speak English were included, although only one resident was excluded by this constraint.

Prior to study commencement, the first author (K. Paddock) spent an introductory period within each care home. She introduced herself and the study, and engaged in informal conversations, to ensure that potential participants were comfortable with her presence and identified her as a researcher, not a visitor or staff member.

Convenience and purposeful techniques were used to sample residents, their relatives, and staff for interview. These included if residents/relatives had particularly positive or negative experiences of the move to a care home and subsequent adjustment or staff who were involved in daily decision making in the care homes or care of residents. Informed consent was obtained prior to recording of interviews. It was not possible to obtain written consent prior to observations due to the busy, often transient nature of care homes, and the risk of disrupting daily care or altering the dynamic of any event being observed. Information about the study and observations were displayed in each care home, and before each observation, individuals were verbally made aware of the researcher’s presence. Individuals could opt-out of observations via the researcher, members of staff, or opt-out form, and any field notes would then be excluded from analysis, an approach used elsewhere ( Conroy, 2017 ; Newnham, McKellar, & Pincombe, 2017 ). No individuals opted out.

Within-Case Methods: Data Collection

Semistructured topic guides were designed to provoke discussion of perceptions of the residents’ identity over their life course, their transition to the care home, and subsequent adjustment. Staff were asked for their perspectives on their roles in promoting identities within the care home, on perceived barriers and facilitators, and on residents’ adjustment over time. Questions included “Tell me about your move to the care home,” “What would you consider to be a ‘good’ day for you?” (Residents), “How would you describe [the resident]?”, “What would you consider to be meaningful activities for him/her?” (Relatives), “Tell me about a time a resident moved here,” “How do you incorporate individuality within the care home?” (Staff). Questions were developed iteratively to reflect emerging topics and themes.

Observations

All residents, staff, and relatives were eligible for inclusion in observations. Observations were exploratory and guided by SIP’s assertion that identities are influenced by social interactions and can be expressed externally, such as via hobbies and possessions. Observations and field notes focused on daily events in the care homes, including organized activities, daily care, and interactions between residents, staff, and visitors. Field notes also included conversations between participants and the first author. Residents without capacity to consent or opt-out were included in field notes for contextual purposes if they were central to observations involving other participants. Observations were a mixture of participatory and nonparticipatory: At times, the researcher remained a passive observer, but where possible she contributed informally to the daily life of the care homes by helping to serve meals and make drinks. This facilitated immersion in each care home and being allowed to witness personal care, such as dressing, an approach used in a similar context ( Næss et al., 2016 ). Observations occurred on different days and times of day, including evenings and weekends, to reduce the possibility that data were focused around particular activities or participants.

Data collection ceased once data saturation was reached, where no new findings emerge in subsequent data collection, within or across cases ( O’Reilly & Parker, 2012 ).

Data Analysis, Rigor, and Validity

Transcripts of recorded interviews and field notes were managed using NVivo and analyzed, within and cross-case, using framework analysis ( Ritchie & Spencer, 1994 ). This is a systematic and rigorous approach consisting of five interrelated stages (see Box 1 ), whereby iterative data collection and analysis of multiple data sources produce a transparent audit trail, so findings and interpretations are grounded in the data ( Gale, Heath, Cameron, Rashid, & Redwood, 2013 ; Ward, Furber, Tierney, & Swallow, 2013 ). The theoretical propositions derived from SIP (section Study Design) informed the preliminary coding framework, which was continuously reviewed in light of emergent data-driven codes and themes. Pattern-matching of data against a priori propositions reconciles the diverse perspectives of a phenomenon within and across cases ( Almutairi, Gardner, & McCarthy, 2014 ). Analysis generated a final analytic framework of 62 codes, grouped, and charted into four themes.

Box 1. Stages of Framework Analysis

Immersion in the data. Read complete transcripts and field notes.

Initial development of a coding framework developed through a priori issues and familiarization stage.

The process of systematically applying the thematic framework to data. Changes made as necessary to reflect the data.

Using headings from thematic framework to create charts of data.

Searching for patterns and explanations in the data.

All data were collected by the first author (K. Paddock), who has prior experience working and researching in social care settings, but is not a clinician. She led data analysis, and regularly discussed emerging findings and experiences with the other three authors, two of whom (C. Brown Wilson and C. Walshe) are registered nurses with experience of working and researching in residential and social care.

Rigor and validity were ensured through the triangulation of multiple modes of data collection and sources of evidence across multiple cases, conducted over time. For respondent validation, the first author provided oral summaries of data and interpretations to participants, and invited comments.

To ensure reflexivity, the first author kept a reflexive diary alongside field notes to record her possible biases and role in shaping encounters. Developing a reflexive, iterative process between data collection and analysis continuously connected the data with emerging insights, leading to a more refined, and credible, understanding of identity ( Lincoln & Guba, 1985 ; Shenton, 2004 ; Srivastava & Hopwood, 2009 ).

Research Ethics Committee approval was obtained from the University of Manchester and Northampton NRES committee (reference number 12/EM/0431). All names have been changed to pseudonyms to protect anonymity. Permission was only granted by the ethics committees to interview residents with capacity to consent.

Semistructured interviews were conducted with 18 participants, and over 260 hr of observations were conducted over a 12-month period across the three cases (see Table 2 ). Interviews lasted between 18 min and 1.5 hr. The majority of residents across the care homes had severe dementia, so could not be interviewed. Some participants were intimidated by a recorded interview, and many staff were too busy, so preferred discussions to be included as field notes (see Table 2 ). Residents also received very few visitors during the data collection period.

Interview Sample and Observational Data Across Care Homes

Within-case analysis generated substantially similar experiences and themes in each care home, and thus, results from a cross-case analysis are presented, with any divergent themes discussed. The four interrelated themes are as follows:

• Changing with age, and how this predated a move into a care home;
• Bounded identity;
• Independence and autonomy; and
• Social comparisons.

Changing With Age

Prior to the relocation to a care home, residents and relatives acknowledged that increased frailty impeded residents’ abilities to perform everyday tasks and meaningful activities, which influenced their self-perception.

Ageing is a terrible thing . . . You can’t do what you used to do . . . (Hayley [resident], interview, Care Home 03)

Social networks and interactions gradually receded due to bereavements or family and friends moving away, which made residents feel disconnected and unable to be themselves:

I miss my people. Where are my people? They know who I am . . . (Philippa [resident], field notes, Care Home 02)

Residents adapted their homes, hobbies, and activities to accommodate these changes. For instance, Ruth (resident, Care Home 02) connected with her family and friends by knitting items for them, but her arthritis restricted her ability to hold knitting needles, so she began crocheting, which uses a different type of needles. This enabled Ruth to continue to make gifts and maintain a feeling of connectedness to important social networks.

The aging process had affected residents’ sense of self, but some had been able to employ strategies to help mitigate its impact. The care home further impeded their established identities and restricted residents’ abilities to adjust in a manner most acceptable to themselves.

Bounded Identity

Residents’ own homes served as a benchmark for the expression of their personal identities, particularly through possessions, clothing, and activities, but the care home environment largely restricted this.

Possessions

All participants agreed that personal possessions helped residents to express their personal and social identities and served as anchors to important memories.

When they wake up ‘til they go to sleep they have that sense of belonging. That this is my room now . . . I know that I bought that clock at such and such a place . . . and that picture there of my husband, that’s a reminder of me and my husband when I was younger . . . (Charlotte [staff, manager], interview, Care Home 02)

Staff emphasized that rooms could be personalized with furniture from home, but there was limited scope to do so because of the small size of most bedrooms. Residents had to relinquish many personal possessions, which upset them and their families, as this was associated with loss of important memories and symbols of identity. Julia (Care Home 01) had been a seamstress, her sewing machine a symbol of her independence, and an anchor for memories of her deceased husband. It was too large for the care home, and its loss signified the loss of important identities and memories:

. . . I’ll never operate the sewing machine again. It’s just the fact that [it’s in storage, not with her]. And it’s my past. (Julia [resident], interview, Care Home 01)

Residents across the care homes had little opportunity to acquire new possessions because there were infrequent visitors to support procurement. Staff typically focused on the occasional acquisition of practical items, such as underwear or toiletries. However, staff also stated that the minimal involvement of relatives made it difficult for them to learn about the preferences of residents with less communicative ability. There were anomalous instances where staff purchased meaningful items for residents, such as a stereo for a resident who loved music (Care Home 01), and jewelry in the color of a resident’s favorite football team (Care Home 02).

Residents and relatives often mentioned the importance of personal aesthetic. Residents admitted to the care home as an emergency had little input into which belongings they kept or relied on clothing borrowed from other residents or purchased by staff. Clothing was occasionally lost or mixed-up between residents, which upset residents and their relatives, who felt that an element of themselves had been stolen. This was particularly pertinent for relatives of residents with dementia, as they felt it highlighted their increased depersonalization and powerlessness:

It was like she was wearing part of me mum. (Amanda [relative], field notes, Care Home 02)

As care needs increased, staff in Care Homes 01 and 02 in particular tended to dress residents in looser-fitting, easy-to-change and easy-to-clean clothes, or “babywear” ( Twigg and Buse, 2013 : 330), regardless of the individual’s personal aesthetic. However, there were notable examples across each care home of staff making an effort to incorporate residents’ preferences in their daily care, typically in relation to colors, or whether someone was a “skirt person” or a “trouser person”:

. . . Joanna [staff], said that it’s ‘a bit of a faff’ getting them in and out of trousers, “but it’s what they prefer” . . . (Field notes, Care Home 03)

Residents derived a sense of self through their hobbies and activities. Staff in each care home initially claimed to incorporate residents’ preferences, but during observations, this rarely occurred. Staff felt constrained by understaffing and limited resources and unable to support residents’ identities and individuality. Consequently, there were few activities overall, and observed activities were based on generalizations to please the most people and did not account for nuanced preferences. These included a music-themed reminiscence group, tai chi (Care Home 01), bingo, and a “memory man” who discussed local history (Care Home 02):

. . . let’s say someone’s gay, and like to go to gay bars, and would like to meet gay people, erm, for example. Um, or let’s say someone’s Caribbean and they like to go to Caribbean clubs . . . I find they kind of take the headline title [of residents’ preferences] and that’s about it. (Adam [staff], interview, Care Home 01)

This approach did not satisfy most residents and relatives, who complained about a lack of stimulation and false promises of individualized activities.

I mean, Tracey [manager] said that they did lots of things in the afternoon, and I’ve never been convinced they’ve done as many as Tracey said they did. (Daniel [relative], interview, Care Home 01)

Residents and relatives acknowledged the financial constraints of many care homes, but felt more could be done to improve daily life. Staff also highlighted difficulties of organizing activities for residents with physical and cognitive impairments:

. . . It’s hard to think of where they can go really. You got to think about where they’re going to go to the toilet and everything—so there’s loads to think about before you even take them out. (Laura [staff], interview, Care Home 02)

Participants in Care Home 03 mentioned plans of a daytrip, but none occurred during the data collection period. However, in Care Home 03, some residents attended a weekly church fete unchaperoned; a luxury they valued. Across all three care homes, television was the most common activity observed. There were limited opportunities for residents to suggest ad hoc activities beyond the immediate resources of the care homes.

Independence and Autonomy

Residents and their relatives frequently emphasized the importance of independence as an element of residents’ identities throughout their life course, and evidenced this in a variety of ways. For instance, Carrie (Care Home 02) was an international fashion buyer; Mary (Care Home 02) attended football matches “with the boys,” which was considered unusual at the time; Richard (Care Home 03) was a freelance photographer.

Repeated reflections on their independence highlighted its absence in the care home. Residents missed the freedom to set their own agendas for the day. The care homes all adopted similar routines: set times for waking residents and putting them to bed, for food and drink, and any activities. Staff discouraged deviations from these routines as it jeopardized the smooth running of the care home. Residents felt that minor changes to routines were occasionally catered for, but at a compromise; Louis (resident, Care Home 03) had requested to sleep in one day, but was then allegedly denied his breakfast as the allotted breakfast time had passed and staff were busy elsewhere. Participants’ perceptions of how successful these allowances and compromises were in practice differed:

Well Ruth (resident) likes to get up really early—Ruth likes to get up at like quarter to seven. . . . So—like when they first come [to the care home], you ask them, like what they like to do . . . (Laura [staff], interview, Care Home 02) I like to get up early. But I have to wait for the nurse [to get me up]. (Ruth [resident], interview, Care Home 02)

Strict health and safety policies and organizational efficiency meant risk-averse staff tended to complete minor tasks themselves, such as making hot drinks, which undermined residents’ independence. The role of staff as carers seemed at odds with the expectation that they should also facilitate independence, particularly because of limited resources:

. . . It’s all well and good saying they want to remain independent, but if you can’t walk, you can’t walk . . . It is our job at the end of the day—to keep them well . . . (Edna [staff], field notes, Care Home 02)

To counter the negative perceptions of aging and increased dependency, many residents amended their definitions of independence and autonomy to emphasize minor daily tasks and accomplishments. Autonomy within the care home was limited to small day-to-day decisions, such as choosing a meal from the available selection, requesting an alternative meal where possible, or deciding when to go to bed if they were physically able to do so unaided. Physical independence to perform certain small tasks such as setting tables at mealtimes, usually authorized by staff, helped residents to feel as though they had retained an important element of their personal identities:

Catherine . . . helped to place the cutlery on the tables . . . and added “I know I’m not completely independent anymore. But it’s something” . . . (Catherine [resident], field notes, Care Home 01)

Each care home had members of staff who made a conscious effort to accommodate residents’ autonomous decision making and individual preferences. A notable example involved Edna’s (staff, Care Home 02) determination to allow a resident a “duvet day,” who uncharacteristically wanted to stay in bed. These infrequent instances encouraged residents to express their individuality, and made them feel more in control of their surroundings and their care. With residents’ new perceptions of independence and autonomy largely based on physical capabilities, this enabled them to use levels of cognition as a source of comparison against other residents who experienced dementia or mental health problems.

Social Comparison

Residents without dementia accepted that moving to a care home was necessary because of their care needs, but felt their positive sense of identity was jeopardized because of the association of care homes with severe cognitive and physical impairment. Residents with dementia represented these negative stereotypes, and symbolized the worst aspects of aging. Consequently, residents without dementia distanced themselves from residents with dementia by engaging in social comparison. They regularly pointed out those with dementia and emphasized their own perceived cognitive superiority, while also expressing sympathy and frustration over the often repetitive or disruptive behaviors associated with severe dementia. Such downward social comparisons serve to enhance self-image and in turn improve well-being ( Gibbons & Gerrard, 1991 ):

[Philippa] was looking at the row of residents sat asleep against the wall . . . “Most of these have lost their minds, you know . . . I can still think for myself. I haven’t gone yet” . . . (Philippa [resident], field notes, Care Home 02)

Residents without dementia typically vocalized their comparisons with members of staff, visitors, or the researcher; not with one another. Only two residents in Care Homes 01 and 03 indicated that they were friends and regularly conversed. Most residents suggested they were lonely, but did not converse with others beyond mealtimes. Although residents stated they were unable to hold meaningful social interactions with residents with dementia, it was difficult to determine why residents without dementia did not engage more with one another. Some participants, particularly staff, suggested residents may not wish to invest in making connections with others because they are acutely aware of their own mortality. When asked, residents said that they simply did not like the other residents, or that it was a lot of effort, especially if they were at risk of developing dementia.

I asked Elizabeth why she didn’t chat to Carrie more . . . after they seemed to have a nice time the other day . . . Elizabeth pulled a face and after a pause said “she’ll probably end up like the rest of ‘em in here . . .” (Field notes, Care Home 02)

The purpose of this study was to explore how life in a care home affects on the identities of care homes residents. The use of SIP offers a broad approach to identity that highlights the importance of context-bound social interactions for the development and maintenance of identity within the unique context of a care home. At the outset of the study, we proposed three theoretical propositions. In relation to these propositions, our findings reveal that (a) residents renegotiate their identities within the context of the care home, but use social interactions to facilitate social comparison with more impaired individuals, while largely failing to establish new relationships; (b) care homes have the potential to accommodate a multitude of identities by facilitating links with previous social networks or symbols that are necessary to maintain a sense of self, (c) but lack adequate support or appropriate resources to achieve this. We now discuss these findings in detail, followed by their implications.

Findings confirm the role of activities, possessions, and clothing, in symbolizing identities, particularly in light of personal and physical loss. Continued identification with such meaningful symbols help to bolster identity, even for individuals with limited expressive capacity, and can be maintained through adapted ways of living ( Black et al., 2018 ; Cohen-Mansfield, Marx, Thein, & Dakheel-Ali, 2010 ; Lloyd, Calnan, Cameron, Seymour, & Smith, 2014 ). But for participants in the present study, the care home environment undermined their abilities to adapt, disrupting connections to many important symbols, and resulting in a limited, bounded expression of residents’ identities.

Institutional restrictions, standardized routines, and strict risk management also threatened residents’ independence and autonomy, as perceived staff shortages and limited resources necessitated the precedence of organizational efficiency over individual needs. It has been established that a failure to satisfy needs for independence and autonomy is related to depressive symptoms and poor well-being and also hinders individuality and the expression of personalities ( Custers, Westerhof, Kuin, Gerritsen, & Riksen-Walraven, 2012 ; Goffman, 1961 ; A. Haslam et al., 2009 ; Knight et al., 2010 ; Wiersma & Dupuis, 2010 ; Kloos, Trompetter, Bohlmeijer, & Westerhof, 2018 ). Consistent with other studies ( Falk, Wijk, Persson, & Falk, 2013 ; Golander, 1995 ; Wiersma & Dupuis, 2010 ), participants in the present study reported an “emotional limbo” between the awareness of residents’ increased care needs and dependency on staff, and the importance of independence to residents’ identities. Our findings show that this motivates residents to emphasize their physical abilities to perform small tasks, to reconcile their established identities within a new, more constrained context.

Maintaining links with social networks or establishing new identity-relevant connections is also necessary to reinforce a sense of self and to buffer against a threatened identity or well-being ( Cohen-Mansfield, Golander, & Arnheim, 2000 ; A. Haslam et al., 2009 ; Surr, 2006 ). Relatives have the potential to support residents’ identity and improve resident outcomes by maintaining relationships with them and with staff ( Davies & Nolan, 2006 ; Roberts & Ishler, 2017 ), but most residents in the present study had little contact anyone outside of the care home and thus were unable to maintain identity-affirming connections. However, residents did not appear to value the opportunity to develop friendships with one another, as has been described elsewhere ( Surr, 2006 ; Tester et al., 2004 ). Rather, our findings resonate with those of Abbott and colleagues (2017) , where residents cited various barriers to social interactions with others, but participants in the present study focused on cognitive impairment as the fundamental obstacle. The fact that most older people residing in the care homes of the present study had a diagnosis of dementia reflects the national statistics of the United Kingdom on levels of impairment in care homes ( Alzheimer’s Society, 2014 ). But the belief among unimpaired residents that residents with dementia, particularly those who also had severe physical impairments, were not viable companions and should be avoided, reflects a more complex issue relating to threatened identities.

According to SIP, psychological strategies such as social competition, social creativity, and social mobility can be used to protect a threatened identity ( Reicher et al., 2010 ; Tajfel, 1981 ; Tajfel & Turner, 1979 ). The present study has shown that by highlighting the impairments of others and emphasizing their own abilities, residents without dementia used social creativity, specifically social comparison, as a means of cognitive adaptation. With little consistent opportunity to buffer identities through other means, social comparison and the motivation to distance oneself from impairment may have also served to alienate residents from one another who could have formed meaningful relationships, whether cognitively impaired or otherwise.

Implications

Although global policy states that care provision should enable self-expression and identity, the ability to make choices, and to maintain connections with social networks ( World Health Organisation, 2015 ), our findings suggest that such goals are difficult to achieve in the care home setting. Few visitors and opportunities to maintain connections outside of the care home place greater pressure on staff to perform identity work. To move forward, we need to understand how guidelines or training on identity is implemented in care homes and how this may be improved. In addition, further research on how residents can maintain connections outside of the care home is needed.

Staffing and resource constraints cannot be easily rectified, but care homes could facilitate residents’ needs within the allowances of their means. This study has demonstrated the value of seemingly minor, but meaningful, interactions between stakeholders, small changes to routines, and supported independence and autonomy. Evidence suggests that interventions to facilitate group-based decision making among care home residents regarding the refurbishment of communal areas created a shared identification, increased social engagement, and improved cognitive function and life satisfaction ( C. Haslam et al., 2014 ). Future interventions could support residents to make collective decisions in other, smaller areas of care home life, such as weekly activities or menu choices. This can promote positive social interaction among stakeholders and improve feelings of independence and autonomy, thereby minimizing the necessity for some residents to distance themselves from others. An assessment of such interventions versus standard practice, focusing on the cost implications and impact on staff workload, can help to determine their feasibility in under-resourced facilities.

Strengths and Limitations

This study is the only U.K.-based study to date that has used observational and interview methods across care homes with SIP. A key strength is the volume of data collected: Over 260 hr of observations across 1 year, combined with iterative interviews, facilitated in-depth exploration of context-bound data to understand the phenomenon of identity management over time. SIP has contributed to other social care areas, and its use in the care home setting helped to uncover and explore psychological strategies used by residents to cope and maintain a positive sense of self.

We only interviewed residents who had capacity to consent, which limits the generalizability of the findings. Future observational studies are needed that includes the perspectives of all care home residents. Furthermore, recruitment of care homes proved difficult. Managers were concerned with the potential distraction for staff or suggested the study had duplicitous aims in light of contemporaneous negative media representations of care homes. Although sampling was purposeful, no purpose-built care homes agreed to participate. There were also very few visitors across each care home, resulting in a small sample of relatives interviewed. Although this may limit generalizability, it is nonetheless an artifact of each case and serves to highlight the contemporaneous issues of maintaining relationships, and in turn identity, in care homes.

This study explored how life in a care home affects residents’ identities. The use of SIP within a multiple case study design, with interview and observational methods, is unique in care home research. Although moving to a care home initially emphasized age-related changes, institutional restrictions and limited social networks further undermined residents’ identities over time. The use of social comparison by residents without dementia served to buffer against daily threats to identity, in particular, the threat of being considered severely cognitively impaired and lacking independence. Resource constraints can make it difficult to adequately support diverse identities, yet even small changes to routines and daily care can help. Adequate resources and support within care homes can facilitate the expression of positive identities. This may reduce the need for staunch social comparison and create a more constructive environment for all residents, which may in turn improve well-being.

This study was funded by Medical Research Council doctoral studentship award for K. Paddock. Grant reference MR/J500410/1.

Conflict of Interest

None reported.

• Abbott K. M., Bangerter L. R., Humes S., Klumpp R., & Van Haitsma K (2017). “It’s important, but…”: Perceived barriers and situational dependencies to social contact preferences of nursing home residents . The Gerontologist , 00, 1–10. doi: 10.1093/geront/gnx109 [ PMC free article ] [ PubMed ] [ CrossRef ] [ Google Scholar ]
• Almutairi A. F., Gardner G. E., & McCarthy A (2014). Practical guidance for the use of a pattern-matching technique in case-study research: A case presentation . Nursing & Health Sciences , 16 , 239–244. doi: 10.1111/nhs.12096 [ PubMed ] [ CrossRef ] [ Google Scholar ]
• Alzheimer’s Society.(2013). Low expectations: Attitudes on choice, care and community for people with dementia in care homes London: Author. [ Google Scholar ]
• Alzheimer’s Society.(2014). What is dementia? (Factsheet 400LP. The Information Standard). Retrieved from www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=106
• Black H. K., Rubinstein R. L., Frankowski A. C., Hrybyk G., Nemec M., & Tucker G. G (2018). Identity, semiotics, and use of symbols in adult day services . The Gerontologist , 58, 730–738. doi: 10.1093/geront/gnx074 [ PMC free article ] [ PubMed ] [ CrossRef ] [ Google Scholar ]
• Care Quality Commission.(2016). The state of health care and adult social care in England 2015/16 Retrieved from http://www.cqc.org.uk/content/state-of-care
• Cleary M., Horsfall J., & Hayter M (2014). Data collection and sampling in qualitative research: Does size matter ? Journal of Advanced Nursing , 70 , 473–475. doi: 10.1111/jan.12163 [ PubMed ] [ CrossRef ] [ Google Scholar ]
• Cohen-Mansfield J., Golander H. & Arnheim G (2000). Self-identity in older persons suffering from dementia: Preliminary results . Social Science & Medicine , 51 , 381–394. doi: 10.1016/S0277-9536(99)00471-2 [ PubMed ] [ CrossRef ] [ Google Scholar ]
• Cohen-Mansfield J., Marx M. S., Thein K., & Dakheel-Ali M (2010). The impact of past and present preferences on stimulus engagement in nursing home residents with dementia . Aging & Mental Health , 14 , 67–73. doi: 10.1080/13607860902845574 [ PMC free article ] [ PubMed ] [ CrossRef ] [ Google Scholar ]
• Conroy T. (2017). A beginner’s guide to ethnographic observation in nursing research . Nurse Researcher , 24 , 10–14. doi: 10.7748/nr.2017.e1472 [ PubMed ] [ CrossRef ] [ Google Scholar ]
• Custers A. F., Westerhof G. J., Kuin Y., Gerritsen D. L., & Riksen-Walraven J. M (2012). Relatedness, autonomy, and competence in the caring relationship: The perspective of nursing home residents . Journal of Aging Studies , 26 , 319–326. doi: 10.1016/j.jaging.2012.02.005 [ CrossRef ] [ Google Scholar ]
• Davies S., & Nolan M (2006). ‘Making it better’: Self-perceived roles of family caregivers of older people living in care homes: A qualitative study . International Journal of Nursing Studies , 43 , 281–291. doi: 10.1016/j.ijnurstu.2005.04.009 [ PubMed ] [ CrossRef ] [ Google Scholar ]
• Falk H. Wijk H. Persson L. O. & Falk K (2013). A sense of home in residential care . Scandinavian Journal of Caring Sciences , 27 , 999–1009. doi: 10.1111/scs.12011 [ PubMed ] [ CrossRef ] [ Google Scholar ]
• Froggatt K., Davies S., & Meyer J (2009). Understanding care homes: A research and development perspective . Jessica Kingsley Publishers . [ Google Scholar ]
• Gale N. K. Heath G. Cameron E. Rashid S. & Redwood S (2013). Using the framework method for the analysis of qualitative data in multi-disciplinary health research . BMC Medical Research Methodology , 13 , 117. doi: 10.1186/1471-2288-13-117 [ PMC free article ] [ PubMed ] [ CrossRef ] [ Google Scholar ]
• Geertz C. (1973). Thick description: Toward an interpretive theory of culture . In C. Geertz (Ed.), The interpretation of cultures: Selected essays (pp. 3–30). New York: Basic Books, Inc., Publishers. [ Google Scholar ]
• Gibbons F. X., & Gerrard M (1991). Downward social comparison and coping with threat . In Suls J. M. & Wills T. A. (Eds.), Social comparison: Theory and research (pp. 317–345). Hillside, NJ: Lawrence Erlbaum. [ Google Scholar ]
• Goffman E. (1961). Asylums: Essays on the social situation of mental patients and other inmates . London: Penguin. [ Google Scholar ]
• Golander H. (1995). Chronically ill, old, and institutionalized: Being a nursing home resident . Family & Community Health , 17 , 63–79. doi: 10.1097/00003727-199501000-00008 [ CrossRef ] [ Google Scholar ]
• Haslam C. Alexander Haslam S. Knight C. Gleibs I. Ysseldyk R., & McCloskey L. G (2014). We can work it out: Group decision-making builds social identity and enhances the cognitive performance of care residents . British Journal of Psychology , 105 , 17–34. doi: 10.1111/bjop.12012 [ PubMed ] [ CrossRef ] [ Google Scholar ]
• Haslam A., Jetten J., Postmes T., & Haslam C (2009). Social identity, health, and well-being: An emerging agenda for applied psychology . Applied Psychology , 58 , 1–23. doi: 10.1111/j.1464-0597.2008.00379.x [ CrossRef ] [ Google Scholar ]
• Hockey J., & James A (2003). Social identities across the life course . Basingstoke: Palgrave Macmillan. [ Google Scholar ]
• Hogg M., & Abrams D (1988). Social identifications: A social psychology of intergroup relations and group processes . London: Routledge. [ Google Scholar ]
• Hubbard G., Tester S., & Downs M. G (2003). Meaningful social interactions between older people in institutional care settings . Ageing and Society , 23 , 99–114. doi: 10.1017/S0144686X02008991 [ CrossRef ] [ Google Scholar ]
• Iyer A. Jetten J. Tsivrikos D. Postmes T. & Haslam S. A (2009). The more (and the more compatible) the merrier: Multiple group memberships and identity compatibility as predictors of adjustment after life transitions . The British Journal of Social Psychology , 48 ( Pt. 4 ), 707–733. doi: 10.1348/014466608X397628 [ PubMed ] [ CrossRef ] [ Google Scholar ]
• Jetten J., & Pachana N. A (2012). Not wanting to grow old: A social identity model of identity change (SIMIC) analysis of driving cessation among older adults . In Jetten J., Haslam C., & Haslam A. S. (Eds.), The social cure: Identity, health and well-being . East Sussex, UK: Psychology Press. [ Google Scholar ]
• Kingston A. Wohland P. Wittenberg R. Robinson L. Brayne C. Matthews F. E., … Jagger C; Cognitive Function and Ageing Studies Collaboration (2017). Is late-life dependency increasing or not? A comparison of the Cognitive Function and Ageing Studies (CFAS) . The Lancet , 390 , 1676–1684. doi: 10.1016/S0140-6736(17)31575-1 [ PMC free article ] [ PubMed ] [ CrossRef ] [ Google Scholar ]
• Kloos N., Trompetter H. R., Bohlmeijer E. T., & Westerhof G. J (2018). Longitudinal associations of autonomy, relatedness, and competence with the well-being of nursing home residents . The Gerontologist , 00, 1–9. doi: 10.1093/geront/gny005 [ PubMed ] [ CrossRef ] [ Google Scholar ]
• Knight C., Haslam A., & Haslam C (2010). In home or at home? How collective decision making in a new care facility enhances social interaction and wellbeing amongst older adults . Ageing & Society , 30 , 1393–1418. doi: 10.1017/S0144686X10000656 [ CrossRef ] [ Google Scholar ]
• Kroger J., Martinussen M. & Marcia J. E (2010). Identity status change during adolescence and young adulthood: A meta-analysis . Journal of Adolescence , 33 , 683–698. doi: 10.1016/j.adolescence.2009.11.002 [ PubMed ] [ CrossRef ] [ Google Scholar ]
• Lievesley N., Crosby G., Bowman C., & Midwinter E (2011). The changing role of care homes . BUPA and Centre for Policy on Ageing. Retrieved from http://www.cpa.org.uk/information/reviews/changingroleofcarehomes.pdf (accessed December 20, 2015). [ Google Scholar ]
• Lincoln Y. S., & Guba E. G (1985). Naturalistic inquiry . Newbury Park, CA: Sage. [ Google Scholar ]
• Lloyd L., Calnan M., Cameron A., Seymour J., & Smith R (2014). Identity in the fourth age: Perseverance, adaptation and maintaining dignity . Ageing & Society , 34 , 1–19. doi: 10.1017/S0144686X12000761 [ CrossRef ] [ Google Scholar ]
• Næss A., Fjær E. G., & Vabø M (2016). The assisted presentations of self in nursing home life . Social Science & Medicine , 150 ( Suppl. C ), 153–159. doi: 10.1016/j.socscimed.2015.12.027 [ PubMed ] [ CrossRef ] [ Google Scholar ]
• NCHR&D.(2006). My home life: Quality of life in care homes Retrieved from http://myhomelife.org.uk/wp-content/uploads/ 2014/11/mhl_report.pdf
• Newnham E. C. McKellar L. V. & Pincombe J. I (2017). Paradox of the institution: Findings from a hospital labour ward ethnography . BMC Pregnancy and Childbirth , 17 , 2. doi: 10.1186/s12884-016-1193-4 [ PMC free article ] [ PubMed ] [ CrossRef ] [ Google Scholar ]
• Oakes P. J., Haslam A., & Turner J. C (1994). Stereotyping and social reality . Oxford, England: Blackwell. [ Google Scholar ]
• O’Reilly M., & Parker N (2012). ‘Unsatisfactory Saturation’: A critical exploration of the notion of saturated sample sizes in qualitative research . Qualitative Research , 13 , 190–197. doi: 10.1177/1468794112446106 [ CrossRef ] [ Google Scholar ]
• Reicher S. D., Spears R., & Haslam A (2010). The social identity approach in social psychology . In Wetherell M. & Mohanty C. T. (Eds.), Sage identities handbook (pp. 45–62). London: Sage. [ Google Scholar ]
• Ritchie J., & Spencer L (1994). Qualitative data analysis for applied policy research . In Bryman A. & Burgess R. G. (Eds.), Analyzing qualitative data (pp. 173–194). London: Routledge. [ Google Scholar ]
• Roberts A. R., & Ishler K. J (2017). Family involvement in the nursing home and perceived resident quality of life . The Gerontologist , 00, 1–11. doi: 10.1093/geront/gnx108 [ PubMed ] [ CrossRef ] [ Google Scholar ]
• Shenton A. (2004). Strategies for ensuring trustworthiness in qualitative research projects . Education for Information , 22 , 63–75. doi: 10.3233/EFI-2004-22201 [ CrossRef ] [ Google Scholar ]
• Srivastava P., & Hopwood N (2009). A practical iterative framework for qualitative data analysis . International Journal of Qualitative Methods , 8 , 76–84. doi: 10.1177/160940690900800107 [ CrossRef ] [ Google Scholar ]
• Surr C. A. (2006). Preservation of self in people with dementia living in residential care: A socio-biographical approach . Social Science & Medicine , 62 , 1720–1730. doi: 10.1016/j.socscimed.2005.08.025 [ PubMed ] [ CrossRef ] [ Google Scholar ]
• Tajfel H. (1981). Human groups and social categories: Studies in social psychology . Cambridge: Cambridge University Press. [ Google Scholar ]
• Tajfel H., & Turner J (1979). An integrative theory of intergroup conflict . In Austin W. G. & Worchel S. (Eds.), The social psychology of intergroup relations (pp. 33–37). Monterey, CA: Brooks-Cole. [ Google Scholar ]
• Tester S., Hubbard G., Downs M., MacDonald C., & Murphy J (2004). What does quality of life mean for frail residents ? Nursing and Residential Care , 6 , 89–92. doi: 10.12968/nrec.2004.6.2.12052 [ CrossRef ] [ Google Scholar ]
• Turner J. C. (1982). Towards a cognitive redefinition of the social group . In Tajfel H. (Ed.), Social identity and intergroup relations (Vol. 1 , pp. 15–40). Cambridge: Cambridge University Press. [ Google Scholar ]
• Twigg J. & Buse C. E (2013). Dress, dementia and the embodiment of identity . Dementia , 12 , 326–336. doi: 10.1177/1471301213476504 [ PubMed ] [ CrossRef ] [ Google Scholar ]
• Walshe C. E. Caress A. L. Chew-Graham C. & Todd C. J (2004). Case studies: A research strategy appropriate for palliative care ? Palliative Medicine , 18 , 677–684. doi: 10.1191/0269216304pm962ra [ PubMed ] [ CrossRef ] [ Google Scholar ]
• Ward D. J. Furber C. Tierney S. & Swallow V (2013). Using Framework Analysis in nursing research: A worked example . Journal of Advanced Nursing , 69 , 2423–2431. doi: 10.1111/jan.12127 [ PubMed ] [ CrossRef ] [ Google Scholar ]
• Wiersma E., & Dupuis S. L (2010). Becoming institutional bodies: Socialization into a long-term care home . Journal of Aging Studies , 24 , 278–291. doi: 10.1016/j.jaging.2010.08.003 [ CrossRef ] [ Google Scholar ]
• World Health Organisation.(2015). World report on ageing and health Retrieved from http://apps.who.int/iris/bitstream/handle/10665/186463/9789240694811_eng.pdf?sequence=1
• Yin R. K. (2009). Case study research: Design and methods (Vol. 5 ). London: Sage. [ Google Scholar ]
• Yin R. K. (2010). Qualitative research from start to finish . New York: Guilford Press. [ Google Scholar ]

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Case study: improving the mental health of care home residents in London

In Tower Hamlets, North East London, a large number of care home residents were living with mental health issues e, such as dementia and depression. The multi-disciplinary team was bolstered with support from mental health practitioners to provide extra care to residents.

How was this pilot set up?

  In a 2020-2021 pilot, a Consultant Psychiatrist and 3 Occupational Therapists (OT’s) were funded to provide support to the Tower Hamlets integrated multi-disciplinary team (MDT). The role of these mental health practitioners was instrumental in proactively supporting the mental health needs of people living in care homes, as well as upskilling the mental health knowledge and skills of the wider MDT, including care home staff.  

What impact did this pilot have?

The pilot reduced ambulance call-outs from care homes when a resident’s  mental health illness exacerbated. It also reduced the use of psychotropic medications by residents. The pilot received positive feedback from residents, carers, care home staff and the wider MDT, as it was clear that this approach improved the lives of residents. 

How have you found working as part of this pilot?

“Regular mental health input from a consultant psychiatrist and an OT is invaluable to the patient care. Issues can be addressed quickly and solutions sought rather than dragging on and getting by. Especially with now-mandated regular antipsychotic review this is easier to achieve. I learn a lot from these sessions both in pathology as well as in behaviour management to hopefully be able to transfer the skills to my day-to-day patient care. It is invaluable to help the carers to learn about management/distraction strategies. Ongoing input from the Mental health team will help to upskill and empower the carers and the whole MDT.”

Community Geriatrician in Tower Hamlets

What impact has the mental health team had on residents?

A 68-year-old female with alcohol related dementia and emotionally unstable personality disorder has been in the care home for a year. She had lost weight and had threatened to self-harm multiple times. She was reviewed by her GP and started on Aripiprazole. The Enhanced Health in Care Homes MDT discussed her needs together. Following the MDT meeting, urgent bloods were done which confirmed low sodium. The resident’s hyponatremia was treated and she was reviewed by the psychiatry team. Her antipsychotic medications were stopped and care home staff were given suggestions on ways of managing her behaviour including developing life history and identifying groups that she could be part of. Also, the complex needs psychologist worked with the staff to identify the resident’s triggers. These non-pharmacological management strategies were very helpful to both address the resident’s mental health needs, responding to the needs of the patient in short period of time, improving her quality of life and build the care homes staff confidence in managing mental health illness within the care home. 

For more information, please contact:

• Dr Kapila Sachdev, Consultant Old Age Psychiatrist, Tower Hamlets Mental Health Care of Older People, [email protected]
• Georgina Birch, Operational Lead for the Integrated Care Liaison Team;  [email protected]

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Find case studies and scenarios on a variety of fields in applied ethics.

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For permission to reprint cases, submit requests to [email protected] .

Looking to draft your own case studies?  This template provides the basics for writing ethics case studies in technology (though with some modification it could be used in other fields as well).

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The importance of academic institutions in shaping the societal narrative is increasingly showcased by constant media exposure and continuous requests for social commentary. This case study outlines effective methodologies of leadership, ethics, and change management within an organization, for the purpose of motivating and engaging stakeholders to empathize with and carry out a shared directive.

How might news platforms and products ensure that ethical journalism on chronic issues is not drowned out by the noise of runaway political news cycles?

Ethical questions arise in interactions among students, instructors, administrators, and providers of AI tools.

In water rights discussions, there is an ethical responsibility to include Indigenous people in both conversations and legislation decisions.

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What responsibility does an employee have when information they obtained in confidence from a coworker friend may be in conflict with the needs of the company or raises legal and ethical questions.

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AI in Home Automation: 5 Case Studies [2024]

In an era where technology seamlessly integrates into every aspect of our lives, artificial intelligence (AI) has emerged as a transformative force in home automation, revolutionizing how we interact with our living spaces. Applying AI in home automation is not just about convenience; it’s about creating smarter, safer, and more efficient environments that respond intuitively to our needs. This article explores five intriguing case studies from pioneering companies leading the charge in this technological field. From enhancing elderly care to optimizing home energy management, these examples showcase the diverse applications of AI in automating home environments. Each case study provides insights into the challenges faced by the companies, the AI-driven solutions they implemented, and the remarkable results achieved, illustrating the profound impact of AI on the home automation industry.

AI in Home Automation: 5 Case Studies

1. transforming home living with ai integration by smarthome innovations, company profile.

Established in 2010 with its headquarters in San Francisco, California, SmartHome Innovations is a leading entity in the realm of home automation. The company specializes in developing intelligent systems that integrate seamlessly into everyday home environments, enhancing comfort, efficiency, and security. With over 200 employees and a customer base across the United States, SmartHome Innovations leverages cutting-edge technologies, including artificial intelligence and IoT, to revolutionize home operations. Their dedication to innovation and client satisfaction has positioned them as a dominant force in the smart home technology arena.

As the demand for home automation solutions grew, SmartHome Innovations faced the challenge of designing systems that could learn and adapt to the unique lifestyles of diverse households. Conventional home automation systems typically necessitate manual tuning. They were not intuitive enough to handle the dynamic needs of modern families, such as adjusting to different schedules, preferences, and security requirements. Customers demanded smarter, more adaptive solutions that could not only automate routine tasks but also think ahead and anticipate their needs, thereby making home management truly hands-off and responsive.

SmartHome Innovations developed an advanced AI-driven home management system to address these challenges. This system utilized machine learning algorithms to analyze user behavior patterns and environmental data collected through various IoT sensors around the home. By integrating these insights, the system could rapidly automate heating, lighting, security, and entertainment systems. Features included predictive climate control, adaptive security monitoring, and personalized lighting and entertainment settings. The AI system was designed to be self-learning, constantly adjusting its operations based on ongoing user feedback and changing environmental conditions. Moreover, SmartHome Innovations prioritized user privacy and data security in their AI implementations, ensuring that all data processing complies with the latest cybersecurity standards.

Implementing the AI-driven home automation system by SmartHome Innovations led to a marked improvement in user satisfaction and operational efficiency. Customers reported a 40% reduction in energy usage due to more efficient management of lighting and heating and a significant enhancement in home security and comfort levels. The system’s ability to learn and adapt to user preferences resulted in highly personalized experiences, fostering stronger customer loyalty and engagement. Additionally, the innovative use of AI set SmartHome Innovations apart from competitors, cementing its reputation as a pioneer in the smart home industry. This strategic integration of AI not only improved the quality of life for their customers but also demonstrated the transformative potential of artificial intelligence in making homes smarter and more responsive to human needs.

Related: AI in Veterinary Medicine

2. Enhancing Home Safety and Efficiency with AI by EcoGuard Technologies

EcoGuard Technologies, established in 2012 in Austin, Texas, has carved out a niche in the home automation industry by focusing on eco-friendly and energy-efficient solutions. The company employs approximately 250 people and serves a wide clientele interested in reducing their carbon footprint while enhancing home safety and convenience. EcoGuard’s product line includes smart thermostats, automated lighting systems, and AI-enhanced security features designed to optimize home environments while conserving resources and promoting sustainability.

One of the primary challenges faced by EcoGuard Technologies was the integration of energy efficiency with robust home security systems without compromising either aspect. Homeowners were increasingly concerned about energy consumption and environmental impact but demanded sophisticated security measures to protect against modern threats. The challenge was to create a unified system that could optimize energy usage and provide comprehensive security solutions, adapting to household members’ varying routines and preferences without extensive manual input.

EcoGuard Technologies developed a dual-purpose AI system that integrated its energy management and security solutions to tackle this dual challenge. This AI system used predictive analytics to learn from household patterns and environmental data, allowing it to adjust energy consumption for optimal efficiency and activate security protocols as needed. For instance, the system could detect when the house is empty and switch to energy-saving mode while activating surveillance and entry sensors to high alert. It could also adjust the lighting and temperature based on the time of day and weather conditions, using minimal energy while maintaining comfort and safety. EcoGuard implemented end-to-end encryption and continuous software updates to ensure data privacy and system integrity.

The introduction of EcoGuard’s AI-driven system significantly enhanced homes’ energy efficiency and security. Users reported up to a 50% reduction in monthly energy bills and expressed greater peace of mind with the improved security features. The system’s ability to seamlessly integrate and manage both aspects without user intervention was particularly praised, leading to high customer satisfaction and increased market share. EcoGuard Technologies not only strengthened its position in the market but also set a new standard for how home automation can effectively balance energy efficiency with high-level security, making a strong case for the role of AI in sustainable living.

Related: Intersection of AI and Quantum Computing

3. Personalizing Home Experiences with AI by LifeSync Solutions

LifeSync Solutions is a dynamic start-up based in Seattle, Washington, specializing in personalized home automation technologies. Since its inception in 2015, LifeSync has focused on leveraging AI to create highly customizable home environments that adapt to individual lifestyles and preferences. With a dedicated team of 100 innovators, the company has quickly gained traction by offering bespoke automation solutions catering to modern homes’ intricate needs, from multimedia management to automated pet care and wellness monitoring.

The challenge for LifeSync Solutions was profound: how to design a home automation system that could manage routine tasks and provide deep personalization that felt intuitively aligned with each user’s lifestyle. Modern families’ diverse needs and unpredictable schedules require a system capable of understanding and anticipating individual preferences without constant recalibration. Customers sought a solution that could dynamically adapt to changes in daily routines, such as unexpected guests, varying sleep schedules, and spontaneous events while maintaining the optimal operation of the home’s systems.

In response, LifeSync Solutions developed an advanced AI platform named “Aura,” which combined real-time data analytics with machine learning to offer unprecedented personalization in home automation. Aura integrated data from various sources, including calendars, weather forecasts, and biometric sensors, to fully understand and predict homeowners’ needs. It could adjust lighting, music, and temperature to match the mood and preferences of whoever was in the room. Furthermore, Aura featured a sophisticated voice recognition system that allowed users to communicate naturally with their home environment, making adjustments on the fly. LifeSync also ensured that all personal data was processed locally on secure devices to protect user privacy.

The deployment of the Aura AI platform transformed how customers interacted with their living spaces. Homeowners enjoyed a 30% improvement in time spent on home management tasks due to the system’s proactive adjustments and personalizations. Feedback highlighted increased comfort and convenience, with many praising the system’s ability to smoothly adapt to planned and unplanned daily changes. The success of LifeSync Solutions’ Aura platform not only boosted their visibility in the competitive home automation market but also showcased the transformative potential of AI in creating deeply personalized and responsive home environments.

Related: Use of AI in Water Resource Management

4. Revolutionizing Elderly Care with AI by AgeCare Technologies

Founded in 2014 and headquartered in Boston, Massachusetts, AgeCare Technologies has become a leader in developing AI-powered home automation systems specifically designed for elderly care. The company employs over 150 professionals and serves thousands of households across the U.S., focusing on enhancing the quality of life for the elderly through technology. AgeCare’s innovative solutions are tailored to support independent living, featuring automated medical reminders, emergency response systems, and adaptive home controls that ensure safety and comfort for seniors.

AgeCare Technologies faced the challenge of creating a home automation system that could cater to the unique needs of elderly individuals, many of whom live alone and require additional support for daily activities and medical care. The main hurdle was integrating advanced technology in a user-friendly manner that seniors with varying tech savvy could easily manage. Additionally, the system needed to be responsive enough to detect emergencies and provide immediate assistance, all while maintaining the dignity and independence of its users.

To address these challenges, AgeCare Technologies developed “SeniorSafe,” an AI-driven home automation platform that offers intuitive and comprehensive support for elderly users. SeniorSafe uses machine learning algorithms to learn its users’ daily patterns and needs, adjusting home settings for optimal comfort and safety. The system features voice-activated controls for straightforward use, night-time fall-prevention lighting, and sensors that track health metrics, alerting family members or emergency services of any irregularities. The AI also adapowers personalized entertainment and communication features, keeping users engaged and connected with their loved ones.

Implementing the SeniorSafe system by AgeCare Technologies led to significant improvements in the safety and independence of elderly users. There was a 75% reduction in home accidents among users, and emergency response times improved by 50% due to the system’s proactive monitoring and alerting capabilities. Family members reported greater peace of mind knowing that their loved ones were well-monitored and supported, while users appreciated the enhanced autonomy they experienced. AgeCare Technologies’ focus on specialized AI solutions for elderly care expanded its market reach and underscored the critical role of adaptive technology in supporting aging populations.

Related: AI in Game Development Case Studies

5. Streamlining Home Energy Management with AI by GreenTech Innovations

GreenTech Innovations, established in 2013 in Denver, Colorado, is dedicated to providing sustainable home automation solutions that promote energy conservation and environmental responsibility. With a workforce of 200 employees, the company has been instrumental in developing smart home systems that optimize energy usage without sacrificing comfort. Their innovative product line includes AI-enhanced HVAC systems, smart lighting, and energy monitoring tools that help users manage their energy consumption more effectively.

The challenge for GreenTech Innovations was to develop a home automation system that could reduce energy consumption and adapt to the unpredictable energy needs of modern households. Users required a system that could dynamically adjust to various factors, such as weather changes, occupancy, and peak electricity pricing, without necessitating manual adjustments. The goal was to create a highly efficient, automated system that could support the energy-saving goals of homeowners while maintaining a comfortable home environment.

GreenTech Innovations launched the “EcoSmart” AI system in response to these needs. EcoSmart employs advanced predictive analytics and machine learning to understand and anticipate household energy patterns. The system automatically adjusts heating, cooling, and lighting based on real-time data such as temperature, sunlight exposure, and home occupancy. EcoSmart is also designed to incorporate renewable energy sources like solar panels to improve energy efficiency. Additionally, the system provides users with detailed feedback on their energy consumption, offering suggestions for further savings based on their usage patterns.

The deployment of the EcoSmart system significantly enhanced energy efficiency for users, with an average reduction in energy consumption by 30%. Property owners benefited from reduced utility expenses and the pleasure of residing in eco-friendly homes. The system’s ability to seamlessly manage energy resources without user intervention was highly praised, increasing customer satisfaction and a stronger market presence for GreenTech Innovations. The success of the EcoSmart system demonstrated the potential of AI to transform home energy management, making sustainable living accessible and convenient for the modern homeowner.

Related: AI in Archaeology Case Studies

The exploration of AI in home automation through these five case studies highlights the significant advancements and tangible benefits that AI technology brings to our homes. As we have seen, AI enhances home security and energy efficiency, personalizes living experiences, and supports the elderly in maintaining their independence. The success stories of companies like SmartHome Innovations, EcoGuard Technologies, and LifeSync Solutions demonstrate the versatile capabilities of AI in addressing specific challenges within home environments. With the ongoing advancement of AI, the possibilities for more creative and adaptive home automation solutions continue to expand. This journey into integrating AI within various aspects of home automation underscores the current achievements. This progression sets the stage for forthcoming innovations that could transform our interaction with and management of personal living environments.

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Palliative care case management in a surgical department for patients with gastrointestinal cancer—a register-based cohort study

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• Published: 16 August 2024
• Volume 32 , article number  592 , ( 2024 )

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• Stine Gerhardt   ORCID: orcid.org/0000-0002-0788-4019 1 ,
• Kirstine Skov Benthien   ORCID: orcid.org/0000-0002-1487-8370 2 , 3 , 4 ,
• Suzanne Herling   ORCID: orcid.org/0000-0002-4109-239X 5 ,
• Marie Villumsen   ORCID: orcid.org/0000-0001-8454-4686 6 &
• Peter-Martin Krarup   ORCID: orcid.org/0000-0003-1319-1451 1  

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The effectiveness of generalist palliative care interventions in hospitals is unknown.

This study aimed to explore the impact of a palliative care case management intervention for patients with gastrointestinal cancer (PalMaGiC) on hospital admissions, healthcare use, and place of death.

This was a register-based cohort study analyzing data from the Danish Register on Causes of Death, the Danish National Patient Register, and the Danish Palliative Database.

Setting/participants

Deceased patients with gastrointestinal cancer from 2010 to 2020 exposed to PalMaGiC were compared over three periods of time to patients receiving standard care.

A total of 43,969 patients with gastrointestinal cancers were included in the study, of whom 1518 were exposed to PalMaGiC. In the last 30 days of life, exposed patients were significantly more likely to be hospitalized (OR of 1.62 (95% CI 1.26–2.01)), spend more days at the hospital, estimate of 1.21 (95% CI 1.02–1.44), and have a higher number of hospital admissions (RR of 1.13 (95% CI 1.01–1.27)), and were more likely to die at the hospital (OR of 1.94 (95% CI 1.55–2.44)) with an increasing trend over time. No differences were found for hospital healthcare use.

Patients exposed to the PalMaGiC intervention had a greater likelihood of hospitalizations and death at the hospital compared to unexposed patients, despite the opposite intention. Sensitivity analyses show that regional differences may hold some of the explanation for this. Future development of generalist palliative care in hospitals should focus on integrating a home-based approach, community care, and PC physician involvement.

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Patterns of acute hospital and specialist palliative care use among people with non-curative upper gastrointestinal cancer

Use of Palliative Interventions at End of Life for Advanced Gastrointestinal Cancer

Palliative care is associated with reduced aggressive end-of-life care in patients with gastrointestinal cancer.

Avoid common mistakes on your manuscript.

Gastrointestinal cancers account for 35% of cancer-related deaths worldwide, with a projected 15% increase in mortality within a decade [ 1 ]. Patients with end-stage cancers in the esophagus, stomach, pancreas, bile ducts, colon, or rectum often suffer from severe symptoms (1), challenging healthcare systems due to increased healthcare utilization and hospital deaths [ 2 , 3 ]. Thus, offering effective palliative care (PC) interventions to these patients is crucial.

PC aims to improve the quality of life in patients facing problems related to life-threatening illness and should be delivered in at least two levels: a generalist PC level and a specialized PC (SPC) level [ 4 ]. The specialized PC level provides PC for patients with complex needs in specialized PC units or hospices. The generalist PC level delivers PC as an integral approach within the non-specialized setting, such as a surgical hospital department [ 4 , 5 ]. Achieving a high quality of life at the end of life for patients with life-threatening diseases highly depends on the quality of the PC received [ 6 , 7 , 8 ].

Indicators of quality of end-of-life care from administrative data have previously been identified as reduced hospitalizations and healthcare use in the last 30 days of life and decreased mortality in emergency care settings [ 9 , 10 ]. Additionally, it involves avoiding chemotherapy within the last 14 days of life [ 10 ]. Reduced healthcare utilization in PC is associated with improved health-related quality of life (HRQoL), and as Prigerson et al. demonstrated, palliative chemotherapy was associated with reduced HRQoL [ 11 ]. Furthermore, patients receiving palliative chemotherapy or emergency surgery had higher rates of hospital admissions and were less likely to die in their preferred location [ 11 ].

SPC capacity recommendations in Europe are 80–100 beds per 1 million inhabitants and one specialized PC outpatient team per 100,000 inhabitants [ 12 ]. Denmark has 48 beds in SPC per million inhabitants, emphasizing the need for effective PC interventions in hospital departments to provide high-quality PC to all patients not offered SPC [ 12 , 13 ].

In 2013, a nurse-led palliative care case management intervention for patients with gastrointestinal cancer (PalMaGiC) was implemented in a surgical gastroenterology department (Digestive Disease Center) at the Copenhagen University Hospital – Bispebjerg, Denmark, to improve the quality of generalist PC provided.

To our knowledge, no studies investigated the impact of a similar generalist PC intervention on the quality of end-of-life care [ 14 , 15 , 16 , 17 ].

Therefore, this study aimed to explore the impact of the PalMaGiC intervention on the quality of end-of-life care, including hospital admissions, healthcare use, and place of death.

This study was a register-based cohort study with retrospective planning, real-time administrative data, and a prospective chronology of exposure and outcomes.

The cohort consisted of all Danish patients above 18 years who died from cancer in the esophagus, cardia, pancreas, stomach, bile duct, liver, ileum, colon, or rectum from 2010 to 2020, identified in the Danish Register on Causes of Death. Cause of death was grouped as (1) esophagus, cardia, and stomach (ECS), (2) pancreas, (3) liver and bile ducts, (4) colon and rectum (colorectal), and (5) ileum or “other digestive cancers” (other). Within this cohort, we defined a group of exposed patients who received the PalMaGiC intervention as patients with any hospital contact with the Digestive Disease Center at the Copenhagen University Hospital – Bispebjerg (DDC) at least 30 days before death, corresponding to the study period of the last 30 days of life. Unexposed were patients in the cohort with any contact with a hospital department outside of the DDC at least 30 days before death who received standard care.

We linked the cohort using the unique personal identification number to The Danish National Patient Register, Statistics Denmark, and the Danish Palliative Database.

Setting and standard care

The Danish healthcare system is financed through taxes and is free of charge for all patients. In Denmark, everyone with a life-threatening illness should be offered PC based on the needs of the individual [ 18 ]. The regions and municipalities are responsible for delivering generalist PC in hospitals, at home, or in nursing homes. In case of complex PC needs, patients can be referred to a specialized PC unit by any medical doctor (GP or specialized). In Denmark, the organization of generalist PC is not subject to politically defined or clinical guidelines.

The PalMaGiC intervention

All patients at the DDC who were recently diagnosed with incurable gastrointestinal cancer are affiliated with PalMaGiC and offered generalist PC based on their needs. PalMaGiC was initiated in August 2013 to strengthen the quality of generalist PC offered in the DDC. A specialist nurse conducts individualized needs assessments, care plans, and care coordination from the time of an incurable diagnosis of gastrointestinal cancer until death or until initiation of SPC. Patient contacts are by telephone or in the outpatient clinic, depending on patients’ needs. Furthermore, patients have 24-h on-call access to telephone consultation and the possibility of self-referred hospital admission to the DDC if required. Patients can be referred to SPC if they have complex palliative needs.

PalMaGiC was implemented between August 1, 2013, and July 31, 2014. In August 2018, a questionnaire European Organization of Research and Treatment of Cancer QoL Questionnaire Core-15 Palliative Care (EORTC QLQ-C15-PAL) [ 19 ] was implemented as a tool to screen and manage symptoms systematically, which was recommended by the Danish Health Authorities [ 18 ]. The questionnaire was used as a dialogue tool at the initial contact with PalMaGiC. PalMaGiC serves approximately 120 patients annually and is described in detail in a previous study [ 20 ]. The DDC treats approximately 20,000 patients annually.

In the Danish National Patient Register, we identified the following outcomes that occurred within the last 30 days of life: hospital admissions (yes/no), defined as an overnight stay of at least 8 h; the total number of hospital admissions; length of stay in the hospital, defined as the cumulative number of days between in-patient admission and hospital discharge; the rate of surgery, defined as any surgical procedure (yes/no) except purely palliative interventions such as catheters or stent placements; and radiological examinations, defined as CT, PET CT, and MRI scans (yes/no). Furthermore, antineoplastic treatment, which was chemotherapy or immunotherapy (yes/no) within the last 14 days of life, was retrieved. From the Danish Register on Causes of Death, information about death at the hospital (yes/no) was retrieved. Patients were followed for the last 30 days of life, except for antineoplastic treatment, which was the last 14 days of life.

Covariates included age, gender, education level, cohabiting status, region of residence obtained from Statistics Denmark, comorbidity from the National Patient Register, and, lastly, status on SPC admittance (yes/no) from the Danish Palliative Database. Education level was categorized according to the International Standard Classification of Education system, combining upper secondary and post-secondary: (1) primary and lower secondary school, (2) upper secondary and post-secondary (vocational), (3) short tertiary and bachelor’s level, (4) Master’s level or above, and (5) not classified [ 21 ]. Cohabiting status was categorized as (1) widow, (2) divorced/separated, (3) married/living with a partner, and (4) never married. Comorbidity scores were calculated according to the Charlson Comorbidity Index (CCI) based on ICD-10 [ 22 ] diagnoses registered from 1998 until death, excluding the cause of death in the calculated score. We grouped CCI scores as < 2 and ≥ 2. The regions of residence were the North Denmark Region, the Central Denmark Region, the Region of Southern Denmark, Region Zealand, and the Capital Region of Denmark.

Statistical analyses

To capture trends over time, a timeline with three periods was established: period (1) 2010–2014 (1st of January–31st of July) covering the pre-intervention period, period (2) 2014–2018 (1st of August–31st of July) was defined as the intervention period, and finally period (3) 2018–2020 (1st of August–31st of December) covering the intervention add-on period including the needs-assessment questionnaire. The implementation period (August 1, 2013, and July 31, 2014) was included in the pre-intervention period in the analyses. In the pre-intervention period, exposure consists of cohort patients treated at the Copenhagen University Hospital – Bispebjerg. For details of the timeline, see Fig.  1 .

PalMaGiC intervention timeline

Descriptive statistics were used to present patient characteristics of the study population and outcomes (percentage, median, and range) for each period. Secondly, we created a separate model for each outcome and period to compare the exposed and those unexposed.

The distribution of the variable length of hospital stay was zero-inflated. Therefore, we analyzed the difference in median length of stay and 95% confidence intervals (CI) using the negative binomial distribution. In the adjusted analyses, we included age (continuous), gender, cause of death, CCI, education level, cohabitation status, and admission to SPC.

Crude and adjusted logistic regression analyses were used to investigate the association between the exposure group and the binary outcomes (yes/no): hospital admission, radiological examinations, surgical procedures, and antineoplastic treatment. From the logistic regression analyses, odds ratio (OR) and 95% CI were calculated. Crude and adjusted Poisson regression analyses with log link function were used to investigate the number of hospital admissions as count data. We estimated the relative risk (RR) and corresponding 95% CIs.

Several sensitivity analyses were conducted: all outcomes for the implementation period of 2013–2014 were analyzed to reveal a potentially different trend in the outcomes that would significantly affect the final analyses. Secondly, we tested the interaction between the PalMaGiC intervention periods to determine the difference between the exposed and the unexposed. Finally, we aimed to test whether the differences seen between the DDC and the rest of the country were due to the practice at the DDC alone or whether they resulted from differences caused by the record systems used or regional cultures in how inclined physicians are to admit patients. Therefore, we performed a sensitivity analysis only, including data from the Capital Region of Denmark and the Region of Zealand because the Epic electronic patent record is used in these two regions. The statistical analyses were conducted in SAS 9.4.

Between 2010 and 2020, in total, 43,969 patients aged 18 or older died from gastrointestinal cancers in the esophagus, cardia, stomach, pancreas, liver, bile ducts, colon, or rectum. Out of the total, 1518 patients were exposed to the PalMaGiC intervention. The characteristics of the exposed and unexposed patients are shown in Table  1 .

Hospitalization in the last 30 days of life and hospital deaths

The proportion of patients hospitalized in the pre-intervention period and throughout the two intervention periods was significantly higher in exposed patients than the unexposed patients (Table  2 ). There was a trend towards higher hospitalization rates over time in the adjusted analyses, with the intervention add-on period representing the highest difference, with 73% hospitalized in the exposed patients vs. 64% for the unexposed patients (OR of 1.62 (95% CI 1.26–2.01)) (Table  2 ).

There was a median length of hospital stay before the intervention of 3 days (0–30) in both the exposed and the unexposed patients. In the adjusted negative binomial regression analysis, however, the exposed patients had significantly longer stays at the hospital, estimate 1.16 (95% CI 1.02–1.31). In the intervention period, the median length of stay was 4.5 (0–30) days for the exposed patients and 3 (0–30) for the unexposed, which was significantly different, estimate of 1.29 (95% CI 1.12–1.49). In the intervention add-on period, the PalMaGiC also had significantly longer median lengths of stay than the unexposed, corresponding to an adjusted estimate of 1.21 (95% CI 1.02–1.44).

Before the intervention, there was no difference between exposed and unexposed for the number of hospital admissions in the last 30 days of life. The PalMaGiC patients had more hospital admissions than the unexposed, with an RR of 1.13 (95% CI 1.03–1.24) in the intervention period. The same applied to the intervention add-on period, where the exposed patients had a RR of 1.13 (95% CI 1.01–1.27) compared to the unexposed.

Dying in the hospital was more frequent in the patients exposed to PalMaGiC in all three time periods, but with an increasing difference between exposed and unexposed patients over time (Table  2 ). Before the intervention, hospital deaths were 51% vs 46%, corresponding an OR of 1.43 (95% CI 1.21–1.68), in the intervention period 53% vs. 39% with an OR of 1.92 (95% CI 1.60–2.29), and in the intervention add-on period 49% vs. 34% with an OR of 1.94 (95% CI 1.55–2.44).

Hospital healthcare use in the last 30 days of life

Before the intervention, we observed that 9% of patients exposed to PalMaGiC vs. 12% in the unexposed patients had surgery in the last 30 days of life; this was 9% vs. 10% in the intervention period, and 7% vs. 8% in the intervention add-on period. In the adjusted logistic regression analyses, no differences were observed between exposed and unexposed patients in the pre-intervention period (OR 0.78 (95% CI 0.59–1.04)) or the intervention add-on period (OR 0.87 (95% CI 0.56–1.35)) (Table  3 ). Similarly, there were no differences in the rate of radiological examinations in the last 30 days of life between exposed and unexposed patients. No differences were observed in antineoplastic treatment in the last 14 days of life, which remained at 2–3% throughout the three periods (Table  3 ).

Sensitivity analyses

The sensitivity analyses of all the outcomes for the PalMaGiC implementation period of 2013–2014 showed no significant differences between the exposed and unexposed. The interaction between the intervention periods revealed a significantly increased likelihood of hospitalizations for exposed patients over time ( p  = 0.04). The sensitivity analysis comparing DDC with the Capital Region of Denmark and the Region of Zealand showed that DDC is not different from these regions when it comes to the number of hospitalizations, and therefore, we must expect that some of the differences we see between the DDC and the rest of the country are explained by regional differences.

This study investigated a generalist PC intervention directed at patients with gastrointestinal cancers in a surgical department. The study found that patients exposed to PalMaGiC were more likely to be hospitalized in the last 30 days of life, with longer stays and a greater chance of dying in the hospital. No significant differences were found in the rate of surgery, radiological examinations, or antineoplastic treatments at the end-of-life between the two groups. To our knowledge, this is the first study to examine the impact of a generalist PC intervention incorporated in a hospital department on the quality of end-of-life outcomes in a large population-based study design.

Previously, RCTs have demonstrated that SPC reduces hospitalization and death in the hospital, but only within the SPC setting [ 23 ]. Surprisingly, this study revealed the opposite finding in a generalist PC setting, showing that patients in the exposure group had an increased likelihood of hospitalization over time. Different mechanisms may explain this result.

Before PalMaGiC, patients with incurable cancer affiliated with the DDC could self-refer for hospital admission directly to the department in case of urgent needs. This practice may explain the higher likelihood of hospitalization in the pre-intervention period. PalMaGiC increased the attention to the patient’s needs and symptoms, and symptom screening intensified this focus in the intervention add-on period. However, this inadvertently may have contributed to the increased hospitalizations observed as patients could call the specialist nurse directly during weekdays. Patients consider the PalMaGiC nurse as their main healthcare contact, resulting in more hospital contacts as opposed to primary care contacts without this opportunity [ 24 ]. In a previous study focusing on a qualitative evaluation of PalMaGiC, patients highlighted that the essential component of the intervention was easy access to a designated nurse and the personalized approach [ 24 ]. The importance of this aspect has been confirmed in other studies [ 25 , 26 ]. Continuity of care by a few providers is regarded as a quality indicator of end-of-life care [ 27 ]. McCaffrey et al. conducted a systematic review to investigate healthcare values essential to the quality of life in patients receiving PC [ 25 ]. They found that crucial elements included ready access to care, coordination, continuity, and consistency among healthcare professionals [ 25 ].

Another explanation could be that PalMaGiC was delivered through needs-based telephone follow-up and in-hospital meetings. Admitting patients to the department may have been considered the best or most well-known option to alleviate the patient’s symptoms since the possibilities of community nursing vary.

Given the evidence that SPC interventions lead to decreased hospitalization and hospital deaths [ 23 ], discussing these opposite findings in the present study is essential. In this cohort, 50% of patients were referred to SPC, assuming that PalMaGiC takes care of the rest of the patients with basic PC needs. In Denmark, SPC is delivered by multidisciplinary teams led by a PC physician in a combination of outpatient clinics, in-hospital, or home-based, depending on patient needs [ 12 ]. A systematic review of cohort and quasi-experimental studies investigated the effects of home-based SPC on hospitalization during the last 6 months to 14 days of life [ 28 ]. All nineteen studies included in the review, except for one, demonstrated lower hospitalization rates for patients receiving SPC. Despite the high resource consumption, healthcare costs were lower in the intervention groups [ 28 ]. We must further explore whether increased collaboration with community nurses and general practitioners can strengthen the PalMaGiC in terms of preventing hospitalizations and deaths at the hospital. However, current differences in community organizations and structures in Denmark may cause significant challenges [ 29 ]. Previous studies suggest that community healthcare services may decrease hospitalizations and deaths at the hospital (34, 35). Compared to SPC, where doctors and nurses specialize in PC, PalMaGiC is a nurse-led intervention that collaborates with non-PC physicians specializing in surgery. The PalMaGiC nurse collaborates with physicians on a needs-based approach in surgical and medical treatment decisions. Timely cessation of unnecessary medical treatment and diagnostics is a core component of SPC, which could be difficult for nurses to implement without a physician. This is confirmed in several studies on nurse-led PC interventions, concluding no effects on HRQoL and symptoms of anxiety and depression, possibly due to the lack of physician involvement [ 16 , 17 , 30 , 31 ]. When adjusting PalMaGiC, we must consider the impact of the lack of PC-physician support despite the previous studies not being directly comparable to PalMaGiC. Finally, previous research addressed inequity in admittance to SPC [ 32 , 33 , 34 ]. Admittance to SPC is lower among men and older patients [ 33 ], patients living alone [ 34 ], and patients with lower education and income [ 32 ], indicating that patients receiving SPC differ from patients receiving generalist PC in terms of age, gender, and socioeconomic status, which might also affect hospitalization rates [ 35 , 36 ].

Overall, the increased attention to patients’ symptoms and problems following the implementation of PalMaGiC, in combination with a lack of PC-physician involvement, easy access to a designated healthcare contact, and limited community care collaboration, could explain the increased likelihood of hospitalizations and death at the hospital found in this study. It is thus essential to find a balance in meeting the needs of patients for healthcare consistency and easy access to support and care without compromising the quality of PC in terms of an increase in hospitalizations and hospital deaths.

Strengths and limitations

The register-based design strengthened the study with real-time data using a nationwide population of patients with gastrointestinal cancer. A limitation is the potential unmeasured confounders. It was not possible to fully account for the significance of other healthcare system components, including the role of general practitioners, distance to the hospital, and regional variation in a healthcare organization. The sensitivity analysis demonstrated that the difference between the exposed and unexposed may partly be explained by regional characteristics, which could not be fully accounted for since exposure was confined to one region. This may have overestimated the impact of unwanted exposure. Another limitation is that this study reports on administrative indicators of end-of-life care. Danish registers do not provide data to conclude on the individual patient’s experienced symptom burden, health status, and quality of life.

Implications for future research and practice

Integrating a home-based approach, PC-physician consultations, and a strengthened collaboration with community nurses and general practitioners should be a focus in developing generalist PC interventions in general hospital departments, such as PalMaGiC. Furthermore, future research should aim to identify patients with gastrointestinal cancers who are at a higher risk of being hospitalized toward the end of life and ultimately dying in the hospital. This may enable PalMaGiC to allocate resources and attention to those patients who require it the most.

Patients exposed to the PalMaGiC intervention had a greater likelihood of hospitalizations and death at the hospital compared to unexposed patients, which, to some extent, could be attributed to regional differences. Increased attention to patients’ symptoms, easy access to a designated healthcare contact provided by the PalMaGiC, limited community care collaboration, and a lack of PC-physician involvement might also contribute to the results. Future research, adjustments, and development of generalist PC interventions in hospitals may benefit from integrating a home-based approach, community care service, and PC-physician consultations for patients at a high risk of hospitalizations and death at the hospital.

Data availability

No datasets were generated or analysed during the current study.

Arnold M, Abnet CC, Neale RE, Vignat J, Giovannucci EL, McGlynn KA et al (2020) Global burden of 5 major types of gastrointestinal cancer. Gastroenterology (New York, NY 1943) 159(1):335–49.e15. https://doi.org/10.1053/j.gastro.2020.02.068

Article   Google Scholar  

Merchant SJ, Brogly SB, Booth CM, Goldie C, Nanji S, Patel SV et al (2019) Palliative care and symptom burden in the last year of life: a population-based study of patients with gastrointestinal cancer. Ann Surg Oncol 26(8):2336–2345. https://doi.org/10.1245/s10434-019-07320-z

Article   PubMed   Google Scholar  

Okafor PN, Stobaugh DJ, Nnadi AK, Talwalkar JA (2017) Determinants of palliative care utilization among patients hospitalized with metastatic gastrointestinal malignancies. Am J Hosp Palliat Med 34(3):269–274. https://doi.org/10.1177/1049909115624373

Payne S, Harding A, Williams T, Ling J, Ostgathe C (2022) Revised recommendations on standards and norms for palliative care in Europe from the European Association for Palliative Care (EAPC): A Delphi study. Palliat Med 36(4):680–697. https://doi.org/10.1177/02692163221074547

Article   PubMed   PubMed Central   Google Scholar  

World Health Organization (WHO). Palliative Care 2020 [ https://www.who.int/news-room/fact-sheets/detail/palliative-care Palliative Care. (2020). Accessed January 2024.

Beijer S, Kempen GIJM, Pijls-Johannesma MCG, de Graeff A, Dagnelie PC (2008) Determinants of overall quality of life in preterminal cancer patients. Int J Cancer 123(1):232–235. https://doi.org/10.1002/ijc.23497

Article   CAS   PubMed   Google Scholar  

Pasman HRW, Brandt HE, Deliens L, Francke AL (2009) Quality indicators for palliative care: a systematic review. J Pain Symptom Manage 38(1):145–56.e21. https://doi.org/10.1016/j.jpainsymman.2008.07.008

Ostgathe C, Voltz R (2010) Quality indicators in end-of-life care. Curr Opin Support Palliat Care 4(3):170–173. https://doi.org/10.1097/spc.0b013e32833add10

Earle CC, Landrum MB, Souza JM, Neville BA, Weeks JC, Ayanian JZ (2008) Aggressiveness of cancer care near the end of life: is it a quality-of-care issue? J Clin Oncol 26(23):3860–3866. https://doi.org/10.1200/jco.2007.15.8253

Earle CC, Park ER, Lai B, Weeks JC, Ayanian JZ, Block S (2003) Identifying potential indicators of the quality of end-of-life cancer care from administrative data. J Clin Oncol 21(6):1133–1138. https://doi.org/10.1200/jco.2003.03.059

Prigerson HG, Bao Y, Shah MA, Paulk ME, LeBlanc TW, Schneider BJ et al (2015) Chemotherapy use, performance status, and quality of life at the end of life. JAMA Oncol 1(6):778–784. https://doi.org/10.1001/jamaoncol.2015.2378

Timm H, Mikkelsen TB, Jarlbæk L (2017) [Specialized palliative care in Denmark lacks capacity and accessibility]. Ugeskr Laeger. 179(26)

Rigsrevision: Access to specialist palliative care. (2020). Accessed

Uitdehaag MJRNP, van Putten PGMD, van Eijck CHJMDP, Verschuur EMLRNP, van der Gaast AMDP, Pek CJRNMN et al (2014) Nurse-led follow-up at home vs. conventional medical outpatient clinic follow-up in patients with incurable upper gastrointestinal cancer: A randomized study. J Pain Symptom Manag 47(3):518–30. https://doi.org/10.1016/j.jpainsymman.2013.04.006

Schenker Y, Althouse AD, Rosenzweig M, White DB, Chu E, Smith KJ et al (2021) Effect of an oncology nurse–led primary palliative care intervention on patients with advanced cancer: the CONNECT cluster randomized clinical trial. JAMA Intern Med 181(11):1451–1460. https://doi.org/10.1001/jamainternmed.2021.5185

McCorkle R, Jeon S, Ercolano E, Lazenby M, Reid A, Davies M et al (2015) An advanced practice nurse coordinated multidisciplinary intervention for patients with late-stage cancer: a cluster randomized trial. J Palliat Med 18(11):962–969. https://doi.org/10.1089/jpm.2015.0113

Reinke LF, Sullivan DR, Slatore C, Dransfield MT, Ruedebusch S, Smith P et al (2022) A randomized trial of a nurse-led palliative care intervention for patients with newly diagnosed lung cancer. J Palliat Med 25(11):1668–1676. https://doi.org/10.1089/jpm.2022.0008

Danish Health Authorities: Recommendations for Palliative Care (2017) https://www.sst.dk/da/sygdom-ogbehandling/~/media/79CB83AB4DF74C80837BAAAD55347D0D.ashx2017 . Accessed January 2024.

Groenvold M, Petersen MA, Aaronson NK, Arraras JI, Blazeby JM, Bottomley A et al (2006) The development of the EORTC QLQ-C15-PAL: a shortened questionnaire for cancer patients in palliative care. Eur J Cancer 42(1):55–64. https://doi.org/10.1016/j.ejca.2005.06.022

Gerhardt S, Leerhøy B, Jarlbaek L, Herling S (2023) Qualitative evaluation of a palliative care case management intervention for patients with incurable gastrointestinal cancer (PalMaGiC) in a hospital department. Eur J Oncol Nursing Off J Eur Oncol Nurs Soc 66:102409. https://doi.org/10.1016/j.ejon.2023.102409

UNESCO INSTITUTE FOR STATISTICS: International Standard Classification of Education (ISCED) (2011) https://uis.unesco.org/sites/default/files/documents/international-standard-classification-of-education-isced-2011-en.pdf2011 . Accessed 23–01–2024

Thygesen SK, Christiansen CF, Christensen S, Lash TL, Sørensen HT (2011) The predictive value of ICD-10 diagnostic coding used to assess Charlson comorbidity index conditions in the population-based Danish National Registry of Patients. BMC Med Res Methodol 11:83. https://doi.org/10.1186/1471-2288-11-83

Kavalieratos D, Corbelli J, Zhang D, Dionne-Odom JN, Ernecoff NC, Hanmer J et al (2016) Association between palliative care and patient and caregiver outcomes: a systematic review and meta-analysis. JAMA, J Am Med Assoc 316(20):2104–2114. https://doi.org/10.1001/jama.2016.16840

Gerhardt S, Leerhøy B, Jarlbaek L, Herling S (2023) Qualitative evaluation of a palliative care case management intervention for patients with incurable gastrointestinal cancer (PalMaGiC) in a hospital department. Eur J Oncol Nurs 66:102409. https://doi.org/10.1016/j.ejon.2023.102409

McCaffrey N, Bradley S, Ratcliffe J, Currow DC (2016) What aspects of quality of life are important from palliative care patients’ perspectives? A systematic review of qualitative research. J Pain Symptom Manage 52(2):318–28.e5. https://doi.org/10.1016/j.jpainsymman.2016.02.012

Virdun C, Luckett T, Lorenz K, Davidson PM, Phillips J (2020) Hospital patients’ perspectives on what is essential to enable optimal palliative care: a qualitative study. Palliat Med 34(10):1402–1415. https://doi.org/10.1177/0269216320947570

Grunfeld E, Urquhart R, Mykhalovskiy E, Folkes A, Johnston G, Burge FI et al (2008) Toward population-based indicators of quality end-of-life care: testing stakeholder agreement. Cancer 112(10):2301–2308. https://doi.org/10.1002/cncr.23428

Gonzalez-Jaramillo V, Fuhrer V, Gonzalez-Jaramillo N, Kopp-Heim D, Eychmüller S, Maessen M (2021) Impact of home-based palliative care on health care costs and hospital use: a systematic review. Palliat Support Care 19(4):474–487. https://doi.org/10.1017/S1478951520001315

Knowledge Center for Rehabilitation and Palliative Care in Denmark. Cancer Rehabilitation in Denmark - status and development from 2017–2021. https://www.rehpa.dk/wp-content/uploads/2022/01/Kraeftrehabilitering-FINAL.pdf2022 (2022). Accessed January 2024

Stefan MS, Knee AB, Ready A, Rastegar V, Burgher Seaman J, Gunn B, et al (2022) Efficacy of models of palliative care delivered beyond the traditional physician-led, subspecialty consultation service model: a systematic review and meta-analysis. BMJ supportive & palliative care. bmjspcare-2021–003507 https://doi.org/10.1136/bmjspcare-2021-003507

Schenker Y, Althouse AD, Rosenzweig M, White DB, Chu E, Smith KJ et al (2021) Effect of an oncology nurse-led primary palliative care intervention on patients with advanced cancer: the CONNECT cluster randomized clinical trial. JAMA Intern Med 181(11):1451–1460. https://doi.org/10.1001/jamainternmed.2021.5185

Adsersen M, Thygesen LC, Neergaard MA, Sjøgren P, Mondrup L, Nissen JS et al (2023) Higher admittance to specialized palliative care for patients with high education and income: a nationwide register-based study. J Palliat Med 26(1):57–66. https://doi.org/10.1089/jpm.2022.0087

Adsersen M, Thygesen LC, Jensen AB, Neergaard MA, Sjøgren P, Groenvold M (2017) Is admittance to specialised palliative care among cancer patients related to sex, age and cancer diagnosis? A nation-wide study from the Danish Palliative Care Database (DPD). BMC Palliative Care 16(1):21. https://doi.org/10.1186/s12904-017-0194-z

Adsersen M, Thygesen LC, Neergaard MA, Jensen AB, Sjøgren P, Damkier A et al (2019) Cohabitation status influenced admittance to specialized palliative care for cancer patients: a nationwide study from the Danish palliative care database. J Palliat Med 22(2):164–172. https://doi.org/10.1089/jpm.2018.0201

Chang CM, Wu CC, Yin WY, Juang SY, Yu CH, Lee CC (2014) Low socioeconomic status is associated with more aggressive end-of-life care for working-age terminal cancer patients. The oncologist (Dayton, Ohio) 19(12):1241–1248. https://doi.org/10.1634/theoncologist.2014-0152

Yu CW, Alavinia SM, Alter DA (2020) Impact of socioeconomic status on end-of-life costs: a systematic review and meta-analysis. BMC Palliative care 19(1):35. https://doi.org/10.1186/s12904-020-0538-y

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Open access funding provided by Copenhagen University. This study was funded by the Danish Cancer Society grant number R303-A17509-21-S3. The funders did not influence the data, analyses, or interpretation.

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Digestive Disease Center, Copenhagen University Hospital – Bispebjerg, Bispebjerg Bakke 23, 2400, Copenhagen, NV, Denmark

Stine Gerhardt & Peter-Martin Krarup

Palliative Care Unit, Copenhagen University Hospital – Hvidovre, Hvidovre, Denmark

Kirstine Skov Benthien

REHPA – Danish Knowledge Centre for Rehabilitation and Palliative Care, Nyborg, Denmark

University of Southern Denmark, Odense, Denmark

The Neuroscience Center, Rigshospitalet, University of Copenhagen, Copenhagen, Denmark

Suzanne Herling

Centre for Clinical Research and Prevention, Copenhagen University Hospital – Frederiksberg, Copenhagen, Denmark

Marie Villumsen

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All authors contributed substantially to the study's concept and design. Data management and analysis were performed by S.G, K.S.B, M.V, and P.M.K. The first draft of the manuscript was written by S.G. All authors critically revised and approved the article upon submission.

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Correspondence to Stine Gerhardt .

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The study was conducted according to the Helsinki Declaration. Approval was obtained from the Danish Data Protection Agency P-2021–414. Data were analyzed on a secure server at the Danish Health Data Authority. Ethical approval is not required for registry-based research in Denmark.

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Gerhardt, S., Benthien, K.S., Herling, S. et al. Palliative care case management in a surgical department for patients with gastrointestinal cancer—a register-based cohort study. Support Care Cancer 32 , 592 (2024). https://doi.org/10.1007/s00520-024-08794-8

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DOI : https://doi.org/10.1007/s00520-024-08794-8

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60% of American Samoans have evidence of previous dengue infection

Since 2021, the US Centers for Disease Control and Prevention (CDC) has recommended dengue vaccination for kids ages 9 to 16 in communities where more than 20% of age-eligible persons have previously been infected with the virus. While vaccination offers strong protection for people with prior infections, but it may increase the risk of severe dengue and hospitalization among those without previous infection at the time of vaccination.

According to a new seroprevalence survey study in Morbidity and Mortality Weekly Report , more than 60% of school-aged children in American Samoa have evidence of a previous dengue infection, suggesting the region meets the criteria established for routine dengue vaccination.  

Schoolchildren had widespread dengue exposure  

From 2016 through 2018, a dengue outbreak in America Samoa resulted in 660 confirmed cases, and transmission of the vector-borne virus was classified as frequent or continuous.  

In the study, a total of 887 students received testing in September and October 2023. The median participant age was 11 years, and 54% of participants were girls. Among tested students, 492 (56%) received positive results for dengue immunoglobulin G, and 371 (42%) received negative results; results for 24 (3%) students were uninterpretable, the authors said.  

Estimated seroprevalence among all students aged 7 to16 years was 59% (95% confidence interval [CI], 47% to71%) and was 60% (95% CI, 48% to 72%) among those age-eligible for vaccination (9 to 16 years).  

In American Samoa, dengue vaccines could be part of a broader strategy for dengue control.

" Seroprevalence is high among all age groups, indicating widespread previous exposure to DENV and potential risk for future outbreaks as well as associated secondary cases among persons previously infected, " the authors concluded. " In American Samoa, dengue vaccines could be part of a broader strategy for dengue control. "

Study shows steep drop in pediatric post-COVID syndrome cases from 2021 to 2023

In January 2021, the US Centers for Disease Control and Prevention (CDC) tracked as many as 200 cases each week of multisystem inflammatory syndrome in children (MIS-C), a severe pediatric inflammatory syndrome that follows COVID-19 infection.  

But the CDC noted only 117 cases of the syndrome in all of 2023, according to a new research letter in JAMA Pediatrics . The authors describe MIS-C hospitalizations identified in the Pediatric Health Information System (PHIS; Children’s Hospital Association) with admission in 2023, compared to cases during peak incidence in 2021.  

In 2021, the PHIS identified 3,578 MIS-C cases. Patients in 2021 were older than those in 2023 (average age, 9 years) than those in 2021 (average age, 6).  

More co-diagnoses of Kawasaki disease  

More patients had a co-diagnosis of Kawasaki disease (KD) in 2023 (30.3%) than in 2021 (8.5%). KD is a rare syndrome resulting in high fever and inflammation of the blood vessels.  

"Increasing KD codiagnoses may reflect increasing diagnostic uncertainty or clinical overlap in a population of younger patients with evidence of SARS-CoV-2 antibodies from prior infection or immunization," the authors wrote.  

Notably, more MIS-C cases in 2023 were fatal than in 2021. A total of 2.3% MIS-C patients died in 2023, compared with 0.6% in 2021.

MIS-C continues to occur, although rarely, with severe outcomes.

"We found a higher proportion of deaths among recent hospitalizations, which warrants further investigation," the authors concluded. "MIS-C continues to occur, although rarely, with severe outcomes. Administrative databases, like PHIS, can complement ongoing surveillance for MIS-C and potentially other diseases that are treated in children’s hospitals.”

UK's NHS to require companies to meet responsible antibiotic manufacturing standard

The United Kingdom's National Health Service (NHS) announced yesterday that pharmaceutical companies applying for a contract through its antibiotic subscription model will have to prove they are meeting responsible antibiotic manufacturing standards.

The first-of-its kind NHS Antimicrobial Product Subscription Model pays companies a fixed annual fee for antibiotics based on their value to the NHS rather than on the volume of antibiotics sold. 

The aim of the program is to incentivize research and innovation in the antibiotic development sector by providing a guaranteed financial return. Antibiotic development has lagged in recent years because of the limited revenue that antibiotics produce, and global health officials are concerned that the lack of new antibiotics will exacerbate the rise in antimicrobial resistance (AMR). 

Going forward, the NHS will require companies that submit a tender for a contract to comply with the  BSI Kitemark for Minimized Risk of AMR certification . The certification was developed by the British Standards Institute (BSI) and the AMR Industry Alliance in 2023 to confirm that antibiotic manufacturers are appropriately controlling waste streams containing antibiotics and other drug products. It was created to address concerns that the release of antibiotic residues into waterways by antibiotic manufacturers is contributing to the spread of AMR.

Promoting trust in the antibiotic supply chain

"Taking action against the growing threat from AMR and reducing waste discharge from the manufacturing process into the environment will help safeguard patients, protect antibiotic efficacy for future generations and help support the long-term fight against AMR, accelerating progress towards a sustainable world," BSI Global Director of Healthcare Sustainability Courtney Soulsby said in a BSI  press release .

More than 25 antibiotic products to date have achieved certification under the program. But Melissa Mitchell, MBA, of the AMR Industry Alliance says requiring certification through the procurement process will provide an additional incentive.

"By introducing an incentive to companies to certify their responsible antibiotic manufacturing within the procurement process, the model will further support efforts to tackle AMR by reducing antibiotic discharge while promoting a greater level of trust and verification to the antibiotic supply chain," she said in an AMR Industry Alliance press release.

Report: Gut microbiome of nursing home residents a 'major reservoir' of antibiotic resistance genes

A  study in Australia suggests the gut microbiomes of nursing home residents harbor hundreds of antibiotic resistance genes (ARGs), researchers reported yesterday in the Journal of Infection.

Conducted from March 2019 through March 2020 at five long-term aged-care facilities in South Australia, the study analyzed resident stool samples and medical records to define the gut resistome in nursing home residents and determine the relationship between antibiotic exposure and enteric ARG carriage. 

Because of the challenges of diagnosing infections in the elderly and the higher likelihood of poor outcomes, widespread empiric antibiotic use is common in nursing homes, and residents experience disproportionate rates of drug-resistant infections. But little is known about asymptomatic carriage of resistance elements.

Doxycycline associated with high ARG abundance

Of the 164 residents (median age, 88; 71.9% women) who provided stool samples, 61% were prescribed antibiotics at least once in the prior 12 months (median prescriptions, 4), primarily for soft tissue, respiratory, or suspected urinary tract infections. The most commonly prescribed antibiotics were penicillins (33.5%), cephalosporins (32.3%), trimethoprim (22%), and doxycycline (12.8%). 

Metagenomic analysis identified more than 1,100 unique ARGs conferring resistance to 38 antibiotic classes, including 20 ARGs of high clinical concern. Carriage of one or more ARGs of clinical concern was identified in 99% of participants.

Multivariate analysis found doxycycline exposure to be the greatest risk factor for high ARG abundance (adjusted odds ratio [aOR], 14.8; 95% confidence interval [CI], 5.3 to 40.9). High enteric ARG abundance was also associated with the number of separate antibiotic exposures (aOR, 6.4; 95% CI, 2.5 to 16.5), exposures within the prior 30 days (aOR, 4.6; 95% CI, 1.9 to 11.2) and prior 30 to 100 days (aOR, 2.6; 95% CI, 1.1 to 6.1), high duration of antibiotic exposure (aOR, 7.9; 95% CI, 3.1 to 19.9), and exposure to three or more antibiotic classes (aOR, 7.4; 95% CI, 2.9 to 18.6). 

"Overall, the implications of our findings extend beyond individual treatment options," the study authors wrote. "They emphasise the importance of a holistic approach to antibiotic stewardship in long-term aged care settings, particularly in light of the expected surge in long-term aged care residency in the future."

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