Family carer perspectives of acute hospital care following a diagnosis of motor neuron disease: a qualitative secondary analysis

O’Brien, Mary; Preston, Harriet

doi:10.1136/bmjspcare-2013-000627

Cited by 6 publications

(13 citation statements)

References 34 publications

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“…However, in some cases there was more than one paper from the same data collection, and other papers utilised overlapping samples. 21 – 23 Papers were predominantly based on data from North America, Australia or Western Europe, with participants typically recruited from hospitals, support groups and research databases. In some cases, recruitment of carers had been secondary to recruiting patient participants for other workstreams.…”

Section: Resultsmentioning

confidence: 99%

End of life care for long-term neurological conditions: A meta-ethnographic review of the experiences of informal carers

et al. 2020

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Background: Family and friends are key providers of care for people living with a long-term neurological condition. Neurological conditions are a significant global contributor to disability and premature death. However, previous research suggests carers often struggle to access appropriate support at end of life. Aims: This review sought to synthesise qualitative studies discussing end-of-life and palliative issues for informal carers supporting people living with neurological conditions. Design: This was a meta-ethnographic synthesis of 38 qualitative studies discussing end-of-life and palliative issues for informal carers supporting people living with long-term neurological conditions. Data Sources: Qualitative articles published after January 2010 in English, addressing carers of people with long-term neurological conditions with regard to palliative care, end of life and/or bereavement. Papers were excluded if it was not possible to separately assess the views of carers. Quality appraisal was not undertaken, but consideration was given to research context. Results: Across the papers, five key themes were identified: the future (un)certainties in the progression of life-limiting neurological conditions; an information paradox of not receiving the right information at the right time; access to support; carers’ roles in decision making around end of life; and maintaining continuity while facing change and disruption in day-to-day living. Conclusions: Given the broad agreement on the challenges faced by carers of people living with long-term neurological conditions, future research should consider opportunities to improve information and support for this group, and the development and evaluation of practical models of service delivery.

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Section: Resultsmentioning

confidence: 99%

End of life care for long-term neurological conditions: A meta-ethnographic review of the experiences of informal carers

et al. 2020

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“…In this study, experiences of burden, needs, resilience and reward in family caregivers were explored. Burden and needs associated with caring for people with MND/ALS are significant and have been identified by many studies worldwide, including unmet basic needs, insufficient psychological support and need for a competent multidisciplinary team to support the patient and caregivers; 7–9,30–33 however, improvement over time seems to be slow.…”

Section: Discussionmentioning

confidence: 99%

Experiences of burden, needs, rewards and resilience in family caregivers of people living with Motor Neurone Disease/Amyotrophic Lateral Sclerosis: A secondary thematic analysis of qualitative interviews

2015

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“…Carers became an important source of information, acting as ‘experts’ for both patients and healthcare practitioners. 30 , 34 , 42 , 49 They provided patient-specific information for healthcare practitioners and disease-specific information for both patients and healthcare practitioners. 20 , 31 , 34 , 35 , 38 …”

Section: Resultsmentioning

confidence: 99%

“…Deterioration and its physical, emotional and social sequelae had a significant effect on the lives of both patients and carers. 8 , 18 – 57…”

Section: Resultsmentioning

confidence: 99%

“…Carers became an important source of information, acting as 'experts' for both patients and healthcare practitioners. 30,34,42,49 They provided patient-specific information for healthcare practitioners and diseasespecific information for both patients and healthcare practitioners. 20,31,34,35,38 Engaging with professional support Multi-disciplinary support was useful during periods of deterioration and associated decision-making.…”

Section: Deterioration and Decision-makingmentioning

confidence: 99%

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The experiences of, and need for, palliative care for people with motor neurone disease and their informal caregivers: A qualitative systematic review

Flemming

Turner

Bolsher³

et al. 2020

Palliat Med

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Background: Despite being a terminal neurodegenerative disease, the role of palliative care is less recognised for motor neurone disease than for other life-limiting conditions. Understanding the experiences of, and need for, palliative care for patients and carers is key to configuring optimal policy and healthcare services. Aim: To explore the experiences of, and need for, palliative care of people with motor neurone disease and their informal carers across the disease trajectory. Design: A systematic review of qualitative research conducted using Thematic Synthesis – PROSPERO registration CRD42017075311. Data Sources: Four electronic databases were searched (MEDLINE, CINAHL, PsycINFO, Social Science Citation Index) using terms for motor neurone disease, amyotrophic lateral sclerosis, palliative care, and qualitative research, from inception to November 2018. Included papers were data extracted and assessed for quality. Results: A total of 41 papers were included, representing the experiences of 358 people with motor neurone disease and 369 caregivers. Analytical themes were developed detailing patients’ and carers’ experiences of living with motor neurone disease and of palliative care through its trajectory including response to diagnosis, maintaining control, decision-making during deterioration, engaging with professionals, planning for end-of-life care, bereavement. Conclusion: The review identified a considerable literature exploring the care needs of people with motor neurone disease and their carers; however, descriptions of palliative care were associated with the last days of life. Across the disease trajectory, clear points were identified where palliative care input could enhance patient and carer experience of the disease, particularly at times of significant physical change.

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Family carer perspectives of acute hospital care following a diagnosis of motor neuron disease: a qualitative secondary analysis

Cited by 6 publications

References 34 publications

End of life care for long-term neurological conditions: A meta-ethnographic review of the experiences of informal carers

End of life care for long-term neurological conditions: A meta-ethnographic review of the experiences of informal carers

Experiences of burden, needs, rewards and resilience in family caregivers of people living with Motor Neurone Disease/Amyotrophic Lateral Sclerosis: A secondary thematic analysis of qualitative interviews

The experiences of, and need for, palliative care for people with motor neurone disease and their informal caregivers: A qualitative systematic review

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