From ‘conductor’ to ‘second fiddle’: Older adult care recipients’ perspectives on transitions in family caring at hospital admission

Lowson, Elizabeth; Hanratty, Barbara; Holmes, Louise; Addington‐Hall, Julia; Grande, Gunn; Payne, Sheila; Seymour, Jane

doi:10.1016/j.ijnurstu.2012.02.005

Cited by 46 publications

(56 citation statements)

References 20 publications

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“…The impact of a spouse's illness upon family carers has long been acknowledged, and carers are known to take on many roles including the provision of physical care, household management, organization of financial affairs, and the adoption of roles which were previously undertaken by the ill person (Ugalde et al, 2011, Stajduhar et al, 2010. Our findings resonate with those of Lowson et al (2012) who explored the effect of transitions between environments of care on caregiving by family members.…”

Section: Everyday Choicessupporting

confidence: 76%

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

2014

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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.

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Section: Everyday Choicessupporting

confidence: 76%

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

2014

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“…Patients observed great flexibility in the way that carers switched between these two contrasting roles of supporter and co-ordinator, particularly when admissions and readmissions were frequent. 86 …”

Section: Patients' Views Of Carersmentioning

confidence: 99%

Transitions at the end of life for older adults – patient, carer and professional perspectives: a mixed-methods study

Hanratty

Lowson

Grande

et al. 2014

Health Services and Delivery Research

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BackgroundThe end of life may be a time of high service utilisation for older adults. Transitions between care settings occur frequently, but may produce little improvement in symptom control or quality of life for patients. Ensuring that patients experience co-ordinated care, and moves occur because of individual needs rather than system imperatives, is crucial to patients’ well-being and to containing health-care costs.ObjectiveThe aim of this study was to understand the experiences, influences and consequences of transitions between settings for older adults at the end of life. Three conditions were the focus of study, chosen to represent differing disease trajectories.SettingEngland.ParticipantsThirty patients aged over 75 years, in their last year of life, diagnosed with heart failure, lung cancer and stroke; 118 caregivers of decedents aged 66–98 years, who had died with heart failure, lung cancer, stroke, chronic obstructive pulmonary disease or selected other cancers; and 43 providers and commissioners of services in primary care, hospital, hospice, social care and ambulance services.Design and methodsThis was a mixed-methods study, composed of four parts: (1) in-depth interviews with older adults; (2) qualitative interviews and structured questionnaire with bereaved carers of older adult decedents; (3) telephone interviews with care commissioners and providers using case scenarios derived from the interviews with carers; and (4) analysis of linked Hospital Episode Statistics (HES) and mortality data relating to hospital admissions for heart failure and lung cancer in England 2001–10.ResultsTransitions between care settings in the last year of life were a common component of end-of-life care across all the data sets that made up this study, and many moves were made shortly before death. Patients’ and carers’ experiences of transitions were of a disjointed system in which organisational processes were prioritised over individual needs. In many cases, the family carer was the co-ordinator and provider of care at home, excluded from participation in institutional care but lacking the information and support to extend their role with confidence. The general practitioner (GP) was a valued, central figure in end-of-life care across settings, though other disciplines were critical of GPs’ expertise and adherence to guidelines. Out-of-hours services and care homes were identified by many as contributors to unnecessary transitions. Good relationships and communication between professionals in different settings and sectors was recognised by families as one of the most important influences on transitions but this was rarely acknowledged by staff.ConclusionsDevelopment of a shared understanding of professional and carer roles in end-of-life transitions may be one of the most effective ways of improving patients’ experiences. Patients and carers manage many aspects of end-of-life care for themselves. Identifying ways to extend their skills and strengthen their voices, particularly in hospital settings, would be welcomed and may reduce unnecessary end-of-life transitions. Why the experiences of carers appear to have changed little, despite the implementation of a range of relevant policies, is an important question that has not been answered. Recommendations for future research include the relationship between policy interventions and the experiences of end-of-life carers; identification of ways to harmonise understanding of the carers’ role and strengthen their voice, particularly in hospital settings; identification of ways to reduce the influence of interprofessional tensions in end-of-life care; and development of interventions to enhance patients’ experiences across transitions.FundingThe National Institute for Health Research Health Services and Delivery Research programme.

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“…El eje de la atención en el usuario mediante la competencia de cuidar en el hogar aporta a los estudios de conceptualización de los elementos que debe tener un plan de egreso hospitalario y apoya el cuidado en un momento de alta vulnerabilidad para el paciente y su cuidador familiar como es el egreso hospitalario (26)(27)(28)(29). Las pautas para fortalecer la competencia de cuidar en el hogar pueden ser un aporte singular para cualificar la práctica.…”

Section: Discussionunclassified

Metodología de implementación del “plan de egreso hospitalario” para personas con enfermedad crónica en Colombia

et al. 2017

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Objetivo: Diseñar y validar una metodología para implementar el “Plan de egreso hospitalario” como mecanismo de apoyo en el cuidado de la salud de personas con enfermedad crónica (EC) y sus cuidadores familiares (CF) en Colombia.Metodología: Estudio de tipo descriptivo cuyo desarrollo contó con los siguientes pasos:1) Consolidación de una guía. 2) Validación del proceso propuesto para la implementación del “Plan de egreso hospitalario”. 3) Prueba piloto de implementación. Resultados: Con base en el estado del arte y la definición de pasos del cuidado que se requieren para el alta hospitalaria se propone una guía de acción basada en la revisión de las condiciones de la institución hospitalaria y en el nivel de competencia para el cuidado en el hogar de los usuarios, buscando garantizar un cuidado continuo y seguro al salir de la institución. Conclusiones: La Metodología utilizada para desarrollar el “Plan de egreso hospitalario” para personas con enfermedad crónica en Colombia que se elaboró y validó en el presente estudio aporta elementos conceptuales y de procedimiento para implementar y sistematizar un programa de alta hospitalaria con base en el fortaleciendo de las condiciones institucionales y de la competencia de cuidado por parte de las personas con EC y sus CF. Dicha metodología constituye una herramienta para ayudar a disminuir la carga del cuidado de la EC en Colombia.

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From ‘conductor’ to ‘second fiddle’: Older adult care recipients’ perspectives on transitions in family caring at hospital admission

Cited by 46 publications

References 20 publications

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

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

Transitions at the end of life for older adults – patient, carer and professional perspectives: a mixed-methods study

Metodología de implementación del “plan de egreso hospitalario” para personas con enfermedad crónica en Colombia

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