Life In Care Homes Research Articles

National stakeholder consultation on how to measure care home residents' quality of life.

The Developing research resources And minimum data set for Care Homes' Adoption and use or DACHA study aims to create a prototype minimum data set combining residents' information recorded by care homes with their data held in health and social care data sets. The DACHA minimum data set will contain information on quality of life. Internationally and in the UK, there is no consensus on collecting information on quality of life in a standardised format equivalent to the consensus for health measures. This paper describes an online consultation with stakeholder representatives about how to measure the quality of life of residents in UK older-adult care homes, for inclusion in the DACHA minimum data set. We drew on principles of the Delphi technique, identifying participants knowledgeable about living, working in and visiting care homes, and preference scoring. We used a bespoke online research engagement platform (Thiscovery, www.thiscovery.org, Cambridge, UK) to engage the participants. Participants included care home staff and managers, old age specialists (clinical/research), commissioners/providers/regulators, primary care professionals, relatives/family carers of care home residents. The consultation is complementary to DACHA's research and patient and public involvement and engagement activities, which have involved people living in care homes; thus, care home residents were not included in this consultation. The first round asked 30 participants to rank the most important principles and domains to consider when measuring quality of life in care homes. Responses to round 1 informed the selection of quality of life measures that round 2 (September 2022) participants were asked to report their familiarity with and confidence in a range of outcome measures all of which met the criteria identified as important in round 1. Recruitment was extended in round 2, and 72 individuals participated. Based on the rankings and the qualitative feedback in round 2, we included four of the shortlisted quality of life outcome measures in DACHA's prototype minimum data set for care homes. The qualitative feedback suggested a shared understanding across the different representative groups about the strengths and limitations of the selected measures. This work makes an important contribution, understanding the opportunities that quality of life measures pose for different stakeholder groups as regular users of care home resident data. In future DACHA work, interviews and focus groups will collect further data about the perceptions of care home staff who completed measures during the pilot study and about the usefulness of the data collected via these measures. The quality-of-life section of the DACHA minimum data set can contribute to informing similar care home data sets internationally. This article presents independent research funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme as award number NIHR127234.

Experiences of People Living with Parkinson's Disease in Care Homes: A Qualitative Systematic Review.

Incidence of disability secondary to Parkinson's disease is increasing faster globally than any other neurological condition. The diverse appearance of symptomatology associated with Parkinson's, and the degenerative nature and subsequent functional decline, often increase dependence on caregivers for assistance with daily living, most commonly within a care home setting. Yet, primary literature and evidence synthesis surrounding these unique and complex care needs, challenges and the lived experiences of this population living in long-term nursing or residential facilities remains sparce. The aim of this review is to synthesize qualitative literature about the lived experience of people with Parkinson's disease living in care home settings. A systematic search of the literature was conducted in October 2023 across six different databases (CINAHL, Medline, EMBASE, PsycINFO, Scopus and Cochrane Library). The Preferred Reporting Items for Systematic Reviews and Meta-Analysis (PRISMA) was used to guide this review. Five articles met the inclusion criteria. Four themes were identified following evidence synthesis: (1) Unique pharmacological challenges. (2) Transitioning and adapting to care home life and routines. (3) Dignified care within care homes. (4) Multidisciplinary care vacuum in care homes. This review revealed the significant and unique challenges for people with Parkinson's disease when transitioning into care homes. These are exacerbated by wider social care challenges such as staffing levels, skill mixes and attitudes as well as a lack of disease-specific knowledge surrounding symptomatology and pharmacology. The lack of multi-disciplinary working and risk-adverse practice inhibited person-centred care and autonomy and reduced the quality of life of people living with Parkinson's disease in care homes. Recommendations for practice highlight training gaps, the need for consistent and improved interdisciplinary working and better person-centred assessment and care delivery.

Measuring quality of life in care homes when self-report is challenging: the construct validity, structural characteristics and internal consistency of the mixed-methods adult social care outcomes toolkit.

The adult social care outcomes toolkit (ASCOT) measures social care-related quality of life (SCRQoL) using self-completion questionnaires and interviews. Many care home residents find such methods inaccessible, leading to a reliance on proxy-reporting. This study aimed to establish the psychometric properties of the mixed-methods toolkit [ASCOT-Care Homes, 4 outcome (CH4)] for measuring SCRQoL when residents cannot self-report. Two cross-sectional, mixed-methods studies were undertaken in care homes for older people in England between 2015 and 2020. We used the ASCOT-CH4 (observation, and interviews with residents and proxies) to collect information about SCRQoL and collected additional data on residents' needs and characteristics, and variables hypothesised to be related to SCRQoL.Hypothesis testing was applied to establish construct validity, Cronbach's alpha for internal consistency and exploratory factor analysis for structural validity. The combined dataset included 475 residents from 54 care homes (34 nursing, 20 residential). Half had a diagnosis of dementia. Less than a third of residents were able to complete an ASCOT interview. Observations and proxy interviews informed researcher ratings, meaning there were no missing ASCOT-CH4 scores. ASCOT-CH4 was found to be a weak unidimensional scale, consistent with other ASCOT measures, with acceptable internal consistency (α = 0.77, 8 items). Construct validity was supported by the findings. The ASCOT-CH4 is an alternative to conventional proxy-questionnaires for measuring the SCRQoL of care home residents, with good psychometric properties. A limitation is that users need a range of data collection skills. Future research should explore whether findings are replicable when data are collected by other researchers.

Why meaningful activities are important in daily care home life

Why meaningful activities are important in daily care home life

Strategies to enhance routine physical activity in care home residents: the REACH research programme including a cluster feasibility RCT

Strategies to enhance routine physical activity in care home residents: the REACH research programme including a cluster feasibility RCT

COVID, Communication and Care Homes: A Staffs’ Perspective of Supporting the Emotional Needs of Families

An important part of care home life is the support given to older residents by their families/friends through regular visiting. Social visits to residents by their families ceased in response to the COVID-19 pandemic and residents were confined to their rooms. This paper reports on how care home staff improvised to address this situation during the first wave of the pandemic. It focuses on steps taken to maintain communication between residents and families to support emotional well-being. We undertook in-depth café-style interviews with twenty-one staff to explore creative practices that they introduced. It was part of a wider Scottish study examining the effect of lockdown on families whose relative was living/dying in a care home (May–October, 2020). Findings reveal the enormous effort by care staff to maintain family connections and the rapid acclimatisation involved working with a number of different on-line platforms, the pulling together of staff from across the care home, and, the attention to emotional well-being of residents living and dying in the care home. Findings highlight the professionalism and commitment of the leadership and staff involved. Whilst some of the staff accounts need no further comment, we draw on some themes from the care home research literature to make sense of the findings in terms of what we might learn going forward. This in-depth qualitative study emphasises the importance of recognising, fostering and nurturing relational compassionate care within long-term care. There is however little evidence whether health and social care policies recognise the importance of this on-going relationship.

The Christian Politics of Identity and the Making of Race in the German Welfare State

The Christian Caritas and Diakonie are Germany’s largest welfare providers. They currently recruit abroad and in refugee shelters to fill staffing shortages in care. Yet, they also seek to preserve their organisations’ Christian identity. Drawing on interviews with facility managers, my research explores how these initiatives shape institutional life in care homes. Specifically, I examine meanings attributed to conversion, notably in relation to Muslim staff. My analysis shows that Christians, nominal (‘by heritage’) or observant, are seen to ‘naturally embody’ care ethics and have privileged access to permanent contracts and leadership positions. The churches’ politics of identity, I argue, racialises affiliation with Christianity into a category of belonging naturally inhabited by some, and only potentially – and always debatably – attainable for others. The analysis feeds into controversies about conversion in the sociology of race and extends scholarship on identity politics beyond its usual focus on minority or far-right activism.

Caring Relations at the Margins of Neurological Care Home Life: The Role of ‘Hotel Service’ Staff in Brain Injury Rehabilitation

Context: Domestic staff in hospitals and aged long-term care have been shown to perform a range of caring roles alongside their cleaning work. Objective: This paper explores the roles these people and other ‘hotel service staff’ (catering, domestic, maintenance, finance and administrative) play in the rehabilitation of people with brain injuries residing in long-term care settings. Methods: This research draws on in-depth ethnographic data collected in 2014–15 over five months at two neurological long-term care settings in the UK; including interviews and observations of day-to-day happenings in the lives of around 60 brain injured residents and the work of 16 hotel service staff. The data was subject to a situational analysis – underpinned by grounded theory and discourse analysis. Findings: Hotel service staff contribute to and compliment the rehabilitation of patients’ cognitive skills, communication and physical functioning, and provide opportunities for occupation and interaction. The therapeutic accomplishments achieved by involving patients in mundane tasks of everyday life (e.g., gardening, managing money, sharing food), fit with the aims of more ‘formalized’ rehabilitation – to restore patients’ abilities to carry out ‘activities of daily living’. Limitations: This study has been unable to fully explicate how hotel service staff have, or gain, the skills to interact so positively with brain injured residents. The study was confined to two sites and may not be reflective of practice elsewhere. Implications: The study findings highlight how the work and interactions of hotel service staff contribute not only to care but to the rehabilitation of people with severe brain injuries. This has implications for service design as well as health and social care education.

Ethical dilemmas: balancing choice and risk with a duty of care in extending personalisation into the care home

AbstractThe article reports the perspectives of senior care staff as part of a study exploring personalisation in care homes. Behind the conceptual sword and shield of ‘choice and control’ associated with personalisation in the United Kingdom (UK) lie irreconcilable flaws, thrown into sharp relief in this context. Personalisation, which originated in community-based social services, has recently been extended into UK care homes. This service development has been stimulated by a desire to promote a humane response to caring for an ageing population, whilst containing costs. Seemingly promoting a relational approach, personalisation also entails consumerist underpinnings, with consequent tensions resulting in weakened policy mechanisms. Discussing findings pertaining to ‘food and eating’, the article illustrates the complex interplay between supporting resident capabilities with poor staff ratios; when choice is not really choice at all; balancing choice, risk and the duty of care; and responding to diverse perspectives about what matters. This complexity reflects the highly skilled nature of care work as promoted by care ethicists. The tensions permeated care home life and found parallels in the wider system of care. Honesty about the limitations of choice and control is essential to achieve ethical care in care homes. The care home constitutes fertile ground for exposing and exploring the shortcomings of the ‘logic of choice’ and for advancing a more relational, inclusive and sustainable conceptualisation of personalisation.

Shining a light on care homes during the COVID 19 pandemic in the UK 2020

Purpose The purpose of this paper is to explore the link between age discrimination and the injustices that have taken place in our care homes during the COVID-19 pandemic in this country. It seeks to show how destructive age discrimination is to those who live in our care homes and attempts to shake up our attitudes to older people, as the pandemic continues. It is hoped that shifts in attitude would lead to a societal revolution in care and support for older people as the pandemic shows us how the current system is breaking down. Design/methodology/approach This is a personal insight into the plight of the care home sector during the COVID-19 pandemic in the UK. The writer has worked in the field of social care and older people’s services for many years and felt compelled to share her learning and observations. This led to venturing more deeply into understanding why those who live, work and visit care homes have been so neglected and “cast into the shadows” in the face of such desperate danger. Whilst tracking the media narrative during the first wave, she attempts to apply her knowledge, in particular gained from working for Help the Aged (now Age UK) as a policy manager for Quality Care, but also draws on experiences as a social worker, commissioner and care provider from the 1980’s to the present. By “shining a light” on care homes, revealing that the darker practices that have taken place contravene the Human Rights Act 1998, it is hoped that the recognition of age discrimination will happen at every level and become better known in its application. The paper observes how deeply rooted it is in us all. Findings Having highlighted some shocking examples of bad practice from the authorities relating to care homes, the article concludes that Government policy on care homes from March to July 2020 was discriminatory and questions how far lessons have been learned. The legislation is in place in the form of the Human Rights Act 1998 to protect older people in care homes but is not being widely implemented at regional policy level. Government rhetoric remains far from reality Instead of redressing the gap and admitting mistakes, there is evidence at a high level of continued denial and the projection of blame on to the care homes themselves. Originality/value The author’s professional background includes meeting the founder of the Gray Panthers, Maggie Kuhn, in the United States in the 1988. This was a defining moment that gave her an original insight into age discrimination and influenced her entire career. It eventually led to her working in national policy for one of the most influential charities for older people at the turn of the millennium, Help the Aged. Here, she co-founded the My Home Life Programme (promoting quality of life in care homes). The paper offers a unique insight into why it is so challenging to achieve quality of life for older people needing care and should be of interest to policymakers, clinical commissioning groups, local authorities, older people’s care providers and carer and user organisations.

Care home staff's experiences and views of supporting the dietary management and choices of older residents with obesity.

Rising numbers of older people with obesity living in care homes is an international phenomenon. Addressing dietary management of residents with obesity is a cause of debate and controversy. On one hand, the 'obesity paradox' suggests obesity protects against morbidity in frail older people. On the other hand, obesity reduces functional status and restricts activity for this group. This paper considers care home staff's experience and views of supporting dietary management and choice for residents with obesity within the context of this controversy. In this qualitative study, 33 staff from seven care homes in the North East England participated in focus groups, and data were analysed using Braun and Clarkes's (2006) six-phase thematic analysis approach. Findings indicate that participants' support of dietary management and choice for residents with obesity may be strongly influenced by the care home environment. Care priorities, dietary management approaches, care home life and family involvement in residents' dietary intake facilitate and encourage weight gain, and as such, pose challenges for staff attempting to support weight management of residents with obesity. Findings suggest that in the care home setting, nutrition policy, guidelines and service commissioning processes and staff nutrition education should include management of obesity. Furthermore, families should be supported to understand the implications of their own caring behaviours on residents' nutritional status.

What is the prevalence of loneliness amongst older people living in residential and nursing care homes? A systematic review and meta-analysis.

the number of older people living in residential and nursing care homes is rising. Loneliness is a major problem for older people, but little is known about the prevalence of loneliness amongst older people living in care homes. to undertake a systematic review of literature on the prevalence of moderate and severe loneliness amongst older people living in residential and nursing care homes. we systematically reviewed the databases Cumulative Index to Nursing and Allied Health Literature (CINAHL), MEDLINE, PsycINFO, Embase, Scopus, Cochrane and Allied and Complementary Medicine Database (AMED) from inception to January 2019. We included all studies reporting data on the prevalence of loneliness amongst older people living in care homes. A random-effects meta-analysis was conducted on all eligible data. a total of 13 articles were included, representing 5,115 participants (age range of 55-102years, mean age 83.5years, 68% female). There was a significant variation between studies in estimates of prevalence. The prevalence of moderate loneliness ranged from 31 to 100%, and the prevalence of severe loneliness ranged from 9 to 81%. The estimated mean prevalence of 'moderate loneliness' was 61% (95% confidence interval (CI): 0.41, 0.80). The estimated mean prevalence of 'severe loneliness' was 35% (95% CI: 0.14, 0.60). the prevalence of both moderate loneliness and severe loneliness amongst care home residents is high enough to warrant concern. However, the significant variation in prevalence estimates warrants further research. Future studies should identify which interventions can address loneliness and promote meaningful social engagement to enhance quality of life in care homes.

Religion in care homes: perspective of a Methodist minister

During the festive period, practising Christians join together to celebrate their beliefs. In a care home, this is no different. Jen Woodfin explains the practicalities of her role as chaplain in a residential home and care home life through the prism of Methodism

Dealing with ethical and existential issues at end of life through co-creation.

In research on co-creation in nursing, a caring manner can be used to create opportunities for the patient to reach vital goals and thereby increase the patient's quality of life in palliative home care. This can be described as an ethical cornerstone and the goal of palliative care. Nurses must be extra sensitive to patients' and their relatives' needs with regard to ethical and existential issues and situations in home care encounters, especially at the end of life. The aim of this study was to explore nurses' experiences of dealing with ethical and existential issues through co-creation at the end of life in palliative home care. The material consisted of texts from interviews with 12 nurses in a home care context. A hermeneutical approach was used, and the method was inspired by a thematic analysis. Informed consent was sought from the participants regarding study participation and the storage and handling of data for research purposes. Ethical permission to conduct the study was given from organizations that participated in this study. A main theme and four subthemes emerged. The main theme was "Deep co-creative relationships are needed to manage ethical and existential issues at the end of life." A model was created to display the findings and relations between ethical issues and situations and the need for a deep trustful caring relationship to solve problems in palliative home care. Together, the themes can be considered as a tool for learning and dealing with ethical and existential issues at the end of life in home care. The themes can also be seen as a part of nurses' ethical competence within this context. The quality of life at the end of life can be improved through co-creation, despite difficult ethical and existential issues. Future research should focus on co-creation from the patients' perspective.

Effectively including the voice of residents in care home design

Care home residents are key stakeholders in residential care homes and yet are rarely included in decision making. This study’s objective was to capture the opinions of care home residents and report on their responses to questions regarding care home life. Residents were asked about their views and observations regarding what aspects of the environment were important, why were they important and if the care home environment supported or inhibited their preferred activities in the home. A visual research method was designed to encompass these research questions, acting as an interview-prompt to engage residents. A new ethical consent procedure was also devised for use with care home residents. Residents’ exercised their critical capacities, reporting in detail on ways care home environments enabled or inhibited choice. Participants revealed how loss of autonomy and personal decision-making undermined their identity and adult choice-making abilities. Social interaction was reportedly vital and visitors highly important. Resident-to-resident relationships were difficult. Privacy was essential. The qualitative analyses highlight the ability of residents to not only participate but to also offer solutions to problems they identified. The role design can play to redress environmental deficits is discussed.

Improving care home life for people with Parkinson's

Lloyd Oates, Annette Hand, Lorelle Dismore, William Gray and Richard Walker discuss a study they carried out into the wellbeing of people with Parkinson's disease in care homes and make a number of recommendations based on thematic analysis of the data.

Nutrition-related parameters predict the health-related quality of life in home care patients.

There is evidence that nutritional status is one of the major factors affecting quality of life. Low quality of life is an important reason that reflects the risk of malnutrition as well as dependency and frailty. The present study aimed to examine nutritional risk factors and sociodemographic features affecting health-related quality of life in home care patients. The data of 209 adult or elderly eligible subjects were evaluated in the study. A general questionnaire including sociodemographic and nutritional characteristics, 'Mini Nutritional Assessment (MNA)', 'Short Form-36 (SF-36) health related life quality scale' and '24-hour dietary recall' were applied with face-to-face interview. Anthropometric measurements were performed using standard measurement protocols and, height and weight measurements of bedridden patients were calculated by equality formulas. While 52.6% of patients were malnourished according to the MNA, only 7.7% were underweight according to the body mass index (BMI). The SF-36 summary component scores (physical and mental component summary scale scores) of malnourished patients were significantly lower than patients at risk of malnutrition or normal (p < 0.05). There were significant positive correlations between SF-36 physical component summary scale scores were significantly correlated with MNA scores (r = 0.517), BMI (r = 0.140) and daily dietary macronutrient intake (energy (r = 0.328), protein (r = 0.165), carbohydrate (r = 0.305), fat (r = 0.275) and fiber (r = 0.268)) (p < 0.05). Besides there were significant positive correlation between SF-36 mental component summary scale scores and MNA scores (r = 0.719), BMI (r = 0.318), daily dietary macronutrient intake (energy (r = 0.388), protein (r = 0.204), carbohydrate (r = 0.335), fat (r = 0.365) and fiber (r = 0.349)) (p < 0.05). It was also determined that MNA had the greatest positive effect and 'having a caregiver' had the greatest negative effect on the physical and mental component summary scale scores. Periodic nutritional screening of home care patients is important and necessary for early nutritional intervention and thus prevention of morbidity and mortality.

Mental Health, Quality of Life and Medication Use Among Care Home Residents and Community Dwelling Older People

In most countries, the prevalence of depression in care homes is substantially higher than among community-dwelling older people. Negative media reports and the stigma associated with long-term care perpetuates the belief that community care is associated with a better quality of life than nursing or residential home care. The aim of this paper is to investigate mental health, quality of life and medication use among a sample of care home residents and community dwelling older people. This cross-sectional study comprised of structured interviews with 75 care home residents and 852 community dwelling older adults in a large health and social care trust within the U.K. Data were collected using an abridged version of the World Mental Health-Composite International Diagnostic Interview (WMH-CIDI). Health-related quality of life was assessed using the SF-6D, derived from responses to the SF-12, which was embedded within the screening section of the WMH-CIDI. Results showed a significantly lower level of mental disorders among older people in the care home sample. Health-related quality of life results indicated that although care home participants were significantly more limited in their physical functioning, they reported better mental health and social functioning than older people living in the community. These results were statistically significant. Prescription rates for mental health medication were higher in the care home sample. This study provides tentative findings about mental health and quality of life in care homes, which should be further explored in future research. The study addresses the negative public perception of quality of life in care homes while contributing to the debate around the health care implications of ‘ageing in place’ for older people. There is a need to address the relationship between mental health, quality of life and medication use among older people across a range of care settings.

Care Home Life and Identity: A Qualitative Case Study.

Background and ObjectivesThe 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 MethodsA 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.ResultsFour 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 ImplicationsSocial 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.

From coping to carrying on: A pragmatic laughter between life and death

This paper explores the relational geographies of laughter, life and death within nursing care homes. Death is often seen as the ultimate Other: sitting in opposition to life, at the limits of what is knowable, and therefore as something that is impossible to fully engage with. In nursing care homes, however, death remains a relatively banal element of ordinary life, and like many other aspects of nursing care home life, is often accompanied by bursts of laughter. Where most scholars position the relation between laughter and death in terms of coping – laughter as a means of pushing away emotions during encounters with death – this paper offers an alternative and more affirmative account of laughter and death. Through drawing on seven months of ethnographic engagement with two nursing care homes in the UK, the paper argues that laughter occurs, not as a means of coping, but rather as a “carrying on”: a taking of our emotions forward with us and folding them into our sense of self rather than pushing them away. Further to this, I argue that this mode of enfolding affectivities is suggestive of a wider form of pragmatic micropolitics in care homes, whereby carers often work towards an “as well as possible” rather than grand, idealistic political visions. In concluding, I therefore propose pragmatics as a new framework through which geographers might further engage with the politics of care.