This thesis draws together a series of publications that were based on research studies conducted between 1981 and 2011, covering care homes and alternative forms of housing with care. The majority of the studies were funded by the Department of Health or its predecessors, and were aimed at responding to policy issues, particularly for local authority grant funding. However, the funding provided the opportunity to collect information for broader purposes, and a central feature linking the studies was the collection, as far as possible, of consistent information about the characteristics of residents over time. The thesis includes 12 pieces of work, based on information collected in ten studies, and illustrates the changes in care home provision from 1981 onwards, and the potential role of alternative forms of housing with care. The aim of the thesis is to explore the following themes: the changing role of care homes and the development of the independent sector, particularly the private sector; factors associated with care home costs; changes in the relative role of residential and nursing homes, including changes in the characteristics of residents over time; changes in the quality of provision; the impact of care home closures; provision for self-funders and the expectations of residents; and the development of alternative forms of housing with care, and the degree to which specialised housing can provide an alternative to residential care. Care homes in the UK provide around 470,000 places and account for over half the expenditure on social care for older people in England. However, information about care facilities and residents is very limited. The papers presented here aimed to fill some of the gaps in understanding residential care and possible alternatives by making use of data collected in a unique series of related research studies conducted over a period of 30 years.

Background: Many interventions aim to alleviate well-documented problems of malnutrition in residential care homes and improve residents’ health and wellbeing. Despite some positive findings, little is known about how and why mealtime interventions might be effective, and in particular, what effects residents’ experiences of mealtimes have on health outcomes. Aim: The aim of this project was to gain an insight into residents’ experiences of mealtimes in order to inform the development of a mealtime intervention. By addressing the issues that impact on residents’ enjoyment of meals, interventions may target improvements in the health and wellbeing of residents more effectively. Methods: This thesis is comprised of three pieces of empirical work conducted using multiple methods. In a systematic review of stakeholder perceptions of mealtimes, five databases were searched from inception to November 2015, followed by thematic analysis of extracted data. In a second study, semi-structured interviews were conducted with eleven residents from four care homes in the South West UK. Thematic analysis was used to derive content and meaning from transcribed interviews. These studies informed the development of a staff-focussed training programme (study three) using the process of Intervention Mapping (IM) as a guide. The feasibility of this intervention was assessed using qualitative surveys and analysed using multiple methods. Fourteen staff from two care homes participated in the feasibility study, which investigated the deliverability of the training programme and the acceptability of its content. Findings: The systematic review and resident interview study revealed that the dining experience was a focal point for residents’ broader experiences of residing in a care home. Whilst meal quality and enjoyment impacted on the dining experience, the provision of care was pivotal in determining mealtime culture and resident agency within the home. This had implications for self-efficacy and social relationships, particularly in the context of transitioning from independent living to a care home community. These findings informed the development of a mealtime intervention, which was found to be deliverable and acceptable to staff. Conclusion: Mealtimes are a mainstay of life in a care home through which residents’ experiences are characterised, exemplified and magnified. Understanding how residents interact with one another, accommodating their preferences and encouraging autonomy may enhance their mealtime experiences. Evidence from the empirical work supports the development of interventions aimed at mealtime staff to improve resident self-efficacy. This thesis has established the necessary groundwork for a pilot trial and future definitive trial to assess resident (and staff) outcome measures including social (e.g., collective engagement) and psychological outcomes (e.g., wellbeing), as well as health outcomes (e.g., nutritional status).

Medically vulnerable populations are constantly at risk of having poor health related outcomes, low satisfaction in the healthcare system and increased mortality. Studies have shown the increased prevalence rates of various medical comorbidities in patients with severe mental illness. These patients are obviously vulnerable because of their mental illness but they are also more likely to have severe cases of medical conditions commonly seen in the general population. Expenditures and utilization of resources is often inappropriate due to frequent visits for acute needs and low rates of preventative care and primary care appointments. My proposed model focuses on the implementation of the integrated care model which encourages collaboration between mental health professionals and primary care physicians through referral programs or integrated clinic settings. This model is initiated with education to both current clinicians as well as future clinicians through medical schools and residency programs. Once the education component has begun, the next steps are formal exploration, preparation, implementation and evaluation of the model in clinics. The aim is to improve health outcomes by increasing preventative care and using behavioral techniques to assist with adherence, increase satisfaction in the healthcare system and contain expenditures by utilizing primary care services instead of emergency services when appropriate.

Thesis (M.S.)--Boston University

Boston University. University Professors Program Senior theses. / PLEASE NOTE: Boston University Libraries did not receive an Authorization To Manage form for this thesis. It is therefore not openly accessible, though it may be available by request. If you are the author or principal advisor of this work and would like to request open access for it, please contact us at open-help@bu.edu. Thank you. / 2031-01-02

Thesis (M.S.)--Boston University

Article / PURPOSE: To determine the prevalence of disability in Peru, explore dependency on caregiver's assistance and assess access to rehabilitation care. METHOD: Data from Disability National Survey (ENEDIS), including urban and rural areas, were analyzed. Disability was defined as a permanent limitation on movement, vision, communication, hearing, learning/remembering or social relationships. Dependency was defined as the self-reported need for a caregiver to help with daily activities; and access to rehabilitation care was defined as the self-report of any therapy for disabilities. Estimates and projections were calculated using sample strata, primary sampling units and population weights, and prevalence ratios (PRs) and 95%CI were reported. RESULTS: From 798 308 people screened, 37 524 (5.1%; 95%CI 4.9--5.2%) had at least one disability. A total of 37 117 were included in further analysis, mean age 57.8 (SD ± 24.1) years, 52.1% women. Dependency was self-reported by 14 980 (40.5%; 95%CI: 39.2-41.9%) individuals with disabilities. A family member, usually female, was identified as a caregiver in 94.3% (95%CI: 93.3-95.3%) of dependent participants. Only 2881 (10.7%; 95%CI: 9.7-11.9%) of people with disabilities reported access to rehabilitation care. Major inequality patterns of disability burden versus access to rehabilitation care were observed by age and education level. Older age groups had higher disability burden yet lower chances of access to rehabilitation care. Conversely, the higher the education level, the lesser the overall disability burden but also the higher chances of reporting receiving care. Private healthcare insurance doubled the probability of having access to rehabilitation compared with those without insurance. CONCLUSIONS: Approximately 1.6 million Peruvians have at least one disability, and 40% of them require assistance with daily activities. Informal caregiving, likely female and relative-provided, is highly common. Rehabilitation care access is low and inequitable. Our results signal a major need to implement strategies to guarantee the highest standard of health care for people with disabilities. Implications for Rehabilitation Major inequality patterns in terms of burden of disability versus access to rehabilitation care were observed: those groups who concentrate more disability reported receiving less rehabilitation care. Caregiving is mostly informal and provided by a direct relative, mainly a woman, who resigned to their usual activities in order to help care for the person with disability. As a result, there is a need to develop appropriate support and training for caregivers. Access to care services in Peru is low and inequitable, but especially for people with disabilities: they experience greater barriers when accessing healthcare services even in the case of having health insurance. / Revisión por pares

The private health care market in the United Kingdom is a multi-billion pound industry whose dynamics remain largely unexamined. This is so even though the boundaries between the public and private sectors are becoming increasingly blurred, particularly in England. Given the growing importance of this sector, the policy community needs to know more about the nature of private health care in the UK, how well the private market operates and how successful have been the various attempts within it to improve value for money and health care quality, given that private health care has traditionally been seen by many citizens as unaffordable. In particular this thesis traces recent efforts by the British United Provident Association (Bupa) to reshape the UK private healthcare market. The account provided draws on the author's experience as a senior Bupa manager involved in planning and implementing such changes. The thesis describes a series of Bupa initiatives designed to change provider behaviour in pursuit of improved quality and value-for-money, and the difficulties and obstacles encountered. The latter often centred on tensions or confrontation between the insurer and professional providers that are discussed in relation to the wider literature on the social and economic organisation of health care markets. An attempt has been made to draw some general conclusions via an empirical study of the role and limitations of market-based changes within the UK private sector. The broad conclusion is that the private market in the UK exemplifies those features of health care seen throughout the developed world that create imperfect market conditions. As such the market is highly resistant to insurer initiatives that would reverse the longstanding trend for premiums to rise above the rate of inflation. It is considered unlikely given the current market structure that any insurer, including Bupa, can escape these constraints in the short term. However, Bupa has implemented some successful initiatives that suggest that longer-term incremental change is possible.

People with advanced dementia often struggle to maintain relationships and can ultimately experience social death before their physical death. Social death occurs when a person is no longer treated as an active agent in their relationships. Relationship-centred care acknowledges the relational nature of care-giving and care-receiving, validating the support needs of both care-givers, and the person receiving care. In the context of care-giving and care-receiving, a person with advanced dementia can become viewed as a passive recipient of care. In the context of caring for people with advanced dementia, more needs to be understood about how caring relationships can be sustained until the end of life in a way which challenges the social death of people with advanced dementia, and supports carers. Understandings of, and assumptions about, the effect of dementia on personhood directly affect the way people with dementia are perceived by others, the quality of their relationships, the quality of their care and the quality of their life. Dementia is often associated with the loss of the person. Kitwood (1997) has been highly influential within dementia care in challenging the loss of personhood, and reconsidering the grounds of personhood, emphasising relationships over cognition. Kitwood’s often cited definition of personhood is: ‘a standing or status bestowed on one human being, by another, in the context of relationship’ (Kitwood 1997 p8). Kontos (2004) however, critiques this social interactionist view of personhood, suggesting it potentially relegates the ‘body’ to a symbolic position rather than guaranteeing personhood. Her work examines the way that personhood is embodied, and how this persists when a person has advanced dementia. She suggests that attention to the embodied aspects of personhood could act as an important counter to the social death of people with advanced dementia, increasing the scope and opportunities for interpersonal relationships, and improved quality of care and quality of life. Zeiler (2013) and Jenkins (2013) develop this theory further, describing intercorporeal personhood springing forth through, and in, interaction, enabling individuals who cannot express themselves without support to do so in interactions. The principle aim of this doctoral research is to examine the care-giving/care-receiving relationship, in palliative dementia care, through the theoretical lenses described above. The research took place in a care home called ‘Primrose Hill’ (a pseudonym): a specialist dementia care home (without nursing), with an increasingly frail population with multiple co-morbidities. Fifteen residents died during the 10 months of the study. The research employed an ethnographic approach, using participant observation alongside interviews and group discussions with staff. Attention was given to how people with dementia responded to care and how they were positioned within the caring relationship; were they seen as passive recipients of care or as active agents, objects or subjects? The approach was appreciative in intent, based on the assumption that care home staff, and people with dementia who live in care homes, through their experience of the human encounter, have important things to teach families, and others working in dementia care, including policy makers and care regulators. When articulated and shared, their experiences can challenge the stereotype of dementia as a ‘death that leaves the body behind’. The empirical analysis revealed three keys facets which shape the caring relationship: body work (direct hands-on bodily care); recognising and supporting selfhood; witnessing and responding to suffering. These three facets of palliative dementia care are examined and reveal the way that people with dementia, even in the advanced stages, continue to experience and respond to the world, and those around them, until they die. This is used to develop the conceptual underpinning of relationship-centred palliative dementia care. The Senses Framework (Nolan et al 2006), which sets out the conditions required for relationship-centred care to occur, is expanded to incorporate embodied selfhood and intercorporeal personhood. The research concludes by arguing, using Ethic of Care theory as an interpretive framework, that an expanded understanding of personhood that includes the ‘body’ is vital, not only at the frontline, but also at a political and societal level, if care is to have integrity.

The aim of this pilot study, which was carried out under the auspices of the Grahamstown Hospice, is to evaluate the functioning of families with a terminally ill member, in order to establish whether these families require family therapy. The Family Assessment Device (FAD), based on the McMaster Model of Family Functioning, was used. Data from 20 families was analysed and the extent to which these families constitute a clinical sample is highlighted. In terms of the dimension of General Functioning, 15 families emerged as functioning at a problematic level. Communication emerged as the most dysfunctional of the seven dimensions of the FAD, with 17 families functioning at a problematic level. As a result of these findings it is argued that family therapy should be incorporated into the range of services offered by hospices. Limitations of this study and directions for future research are also discussed.