The experiences of patients and carers in the daily management of care at the end of life

Background Home is the preferred location for most people with an advanced disease and at the end of life. A variety of care professionals work in community settings to provide support to this population. Patients and their spouses, who also care for them (spouse-carers), are rarely accompanied by these sources of support at all times, and have to manage independently between their contact with care professionals. Aim To explore how patients and spouse-carers manage their involvement with care professionals in the community setting. Method Interpretive phenomenology informs the design of the research, whereby 16 interviews were conducted with the patients and spouse-carers. Interviews were recorded and transcribed verbatim. Data were analysed using phenomenological techniques including template analysis. Findings Patients and spouse-carers were interdependent and both parties played a role in co-ordinating care and managing relationships with professional care providers. The patients and spouse-carers actively made choices about how to manage their situation, and develop and modify managing strategies based on their experiences. Conclusions When daily management is effective and care professionals acknowledge the dyadic nature of the patient and spouse-carer relationship, people have confidence in living with advanced disease

Social inclusion through ageing-in-place with care?

The onset of ill-health and frailty in later life, within the context of the policy of ageing-in-place, is increasingly being responded to through the provision of home care. In the philosophy of ageing-in-place, the home provides for continuity of living environment, maintenance of independence in the community and social inclusion. The provision of assistance to remain at home assumes continuity in the living environment and independence in the organisation of daily life and social contact. This paper explores the changes that occur as a result of becoming a care recipient within the home and concludes that the transition into receiving care is characterised by discontinuity and upheaval which tends to reinforce social exclusion. We draw on the rites of passage framework, which highlights social processes of separation, liminality and reconnection, in analysing this transition to enhance understanding of the experience and gain insights to improve the policy and practice of home care. Separation from independent living leads to a state of liminality. The final stage in the rites of passage framework draws attention to reconnections, but reconnection is not inevitable. Reconnection is, however, an appropriate goal for the care sector when supporting frail or disabled older people through the transition into becoming a home-care recipient

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The New York City Health and Hospitals Corporation: Transforming a Public Safety Net Delivery System to Achieve Higher Performance

Describes the results of the public benefit corporation's improvement initiatives -- a common clinical information system for continuity, coordination on chronic disease management, teamwork and continuous innovation, and access to appropriate care

Supporting children and young people to assume responsibility from their parents for the self-management of their long-term condition: An integrative review

© 2019 John Wiley & Sons Ltd Background: Children and young people with long-term conditions (LTCs) are usually dependent on, or share management with, their families and are expected to develop self-management skills as they mature. However, during adolescence, young people can find it challenging to follow prescribed treatment regimens resulting in poor clinical outcomes. Though reviews have looked at children's and parents' experiences of self-management, none have explicitly examined the parent-to-child transfer of self-management responsibility. Methods: An integrative review was conducted with the aim of exploring the parent-to-child transfer of LTC self-management responsibility, through addressing two questions: (a) How do children assume responsibility from their parents for self-management of their LTC? (b) What influences the parent-to-child transfer of this responsibility? Eight databases were searched for papers published from 1995 to 2017. Methodological quality was assessed; included papers were synthesized to identify themes. Results: Twenty-nine papers were identified. Most papers used qualitative designs and focused on children with diabetes. Participants were predominantly children and/or parents; only two studies included health professionals. Assuming self-management responsibility was viewed as part of normal development but was rarely explored within the context of the child gaining independence in other areas of their life. Children and parents adopted strategies to help the transfer, but there was limited evidence around health professionals' roles and ambivalence around what was helpful. There was a lack of clarity over whether children and parents were aiming for shared management, or self-management, and whether this was a realistic or desired goal for families. Multiple factors such as the child, family, social networks, health professional, and LTC influenced how a child assumed responsibility. Conclusions: Evidence suggests that the parent-to-child transfer of self-management responsibility is a complex, individualized process. Further research across childhood LTCs is needed to explore children's, parents', and professionals' views on this process and what support families require as responsibilities change

Activity Theory Analysis of Heart Failure Self-Care

The management of chronic health conditions such as heart failure is a complex process emerging from the activity of a network of individuals and artifacts. This article presents an Activity Theory-based secondary analysis of data from a geriatric heart failure management study. Twenty-one patients' interviews and clinic visit observations were analyzed to uncover eight configurations of roles and activities involving patients, clinicians, and others in the sociotechnical network. For each configuration or activity pattern, we identify points of tension and propose guidelines for developing interventions for future computer-supported healthcare systems

Living Arrangement Options for People with Intellectual Disabilities: A Scoping Review

This is one of a pair of reports prepared for the Moving Ahead Project. Its partner policy review, Mapping the National Intellectual Disability Landscape (Linehan et al., 2014), outlines current disability services, practices and policies in Ireland. This rapid scoping review provides a brief overview of national and international research exploring living arrangement options for people with intellectual disabilities

Healthy ageing and home: The perspectives of very old people in five European countries

This paper reports on in-depth research, using a grounded theory approach, to examine the ways in which very old people perceive healthy ageing in the context of living alone at home within urban settings in five European countries. This qualitative study was part of a cross-national project entitled ENABLE-AGE which examined the relationship between home and healthy ageing. Interviews explored the notion of healthy ageing, the meaning and importance of home, conceptualisations of independence and autonomy and links between healthy ageing and home. Data analysis identified five ways in which older people constructed healthy ageing: home and keeping active; managing lifestyles, health and illness; balancing social life; and balancing material and financial circumstances. Older people reflected on their everyday lives at home in terms of being engaged in purposeful, meaningful action and evaluated healthy ageing in relation to the symbolic and practical affordances of the home, contextualised within constructions of their national context. The research suggests that older people perceive healthy ageing as an active achievement, created through individual, personal effort and supported through social ties despite the health, financial and social decline associated with growing older. The physicality and spatiality of home provided the context for establishing and evaluating the notion of healthy ageing, whilst the experienced relationship between home, life history and identity created a meaningful space within which healthy ageing was negotiated