Does respite care address the needs of palliative care service users and carers? Their perspectives and experiences

Wolkowski, Anna; Carr, Susan M

doi:10.12968/ijpn.2017.23.4.174

Cited by 7 publications

(4 citation statements)

References 51 publications

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“…Hindrance to carers' adoption of SC stemmed from formal providers' flawed assumption that SC will be provided for by relational support-a point also raised by Wolkowski et al(2017). This study found carers/carees often fell into a vicious circle as the care journey advanced, with diminishing relational support exacerbating isolation, while increasing caregiving responsibilities eroded time available for carers to access communities.…”

Section: Discussionmentioning

confidence: 87%

Facilitating social coping‐‘seeking emotional and practical support from others’‐as a critical strategy in maintaining the family care of people with dementia

Parkinson

Carr

2020

Health Social Care Comm

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Estimates indicate the number of those affected by dementia in the United Kingdom (UK) will rise to one million by 2025 and over two million by 2051 (Prince et al., 2014). This alarming trend is reflected globally with a predicted 135.5 million diagnoses of dementia by 2050(Prince et al., 2013. Presently, there is critical reliance in the UK, as well as more globally, on family carers of people with dementia (hereafter referred to as 'carers') to provide the bulk of care. In the UK total reliance on formal care provision would cost £34.7bn annually (Alzheimer's Society, 2020)-one fifth of the entire health expenditure in England (2018-19) (Harker, 2019). While reliance on formal care of older people was possible in the 20th century, this is becoming less tenable in the 21st century as advances in medicine and a rapidly ageing demographic across Europe (GCOA, 2017) mean the numbers of those reliant on formal support will become overwhelming.Family care represents the preferred method of care for the majority of carers/carees (Dowrick & Southern, 2014) and families

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Section: Discussionmentioning

confidence: 87%

Facilitating social coping‐‘seeking emotional and practical support from others’‐as a critical strategy in maintaining the family care of people with dementia

Parkinson

Carr

2020

Health Social Care Comm

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“…It is critical for institutional decision-makers and program staff to prioritize the trust and unique care needs of families with ALS. This can be supported by maintaining consistency in staff members, upholding clear communication between staff and care partners, and building a collaborative care partnership that acknowledges the centrality of families and their care preferences [ 29 , 30 ]. Prioritizing engagement with the ALS community in the design, delivery, and evaluation may help respite care better meet the needs of families and improve service uptake.…”

Section: Discussionmentioning

confidence: 99%

The impact of respite care from the perspectives and experiences of people with amyotrophic lateral sclerosis and their care partners: a qualitative study

Tam

Buch³

et al. 2022

BMC Palliat Care

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Background Respite care provides caregiving support to people with amyotrophic lateral sclerosis (ALS) and their care partners by providing the care partner with temporary relief from their caregiving duties. The aim of this study was to explore the impact of respite care through the perspectives and lived experiences of people with ALS and their care partners. Methods Thirty-one dyads (62 participants) of people with ALS and their care partners were assigned to either the control group or the respite care intervention. Respite care was provided in the form of home-based services. Semi-structured interviews were conducted with participants at baseline and after a six-month period to gather perspectives on ALS caregiving, perceptions of respite care, and the respite care experience. Interviews were transcribed and subjected to thematic analysis. Results Caregiving challenges specific to the care partner and the patient-care partnership relationship were identified. Overall, people with ALS and care partners responded positively to in-home respite care and reported improved relationship quality, more time for the care partner to pursue personal commitments or take a break, and improved emotional well-being for both the person with ALS and the care partner. Barriers and concerns were raised surrounding privacy and staff consistency. Conclusion This study highlights respite care as a critical tool to alleviate caregiving challenges and support the needs of people with ALS and their care partners. Engagement with the ALS community and formal evaluations of respite care services should be prioritized in order to minimize barriers and best meet the needs of people with ALS and their care partners.

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“…This requires the use of judgement about the patient and their stage of illness—and again, relies on nurses to instigate referral to health psychologists and similar professionals. In addition, COPD nurses should assess the opportunities they have to refer patients to respite care, rehabilitation care and other forms of community‐based care when planning a patient's discharge—interventions that have been advocated as important elements of COPD care in other studies (Hasson et al., ; Wolkowski & Carr, ).…”

Section: Discussionmentioning

confidence: 99%

“…This study also highlights the importance of good care planning and positive interventions in COPD. Wolkowski and Carr () discuss the potential use of respite care for COPD patients that can both alleviate patient anxieties about not being able to cope at home and also give relatives a break from caring. This is certainly one intervention nurses could consider following an acute exacerbation of COPD and has been found valuable in other COPD studies (Wilson et al., ).…”

Section: Discussionmentioning

confidence: 99%

Experiences of older people following an acute exacerbation of chronic obstructive pulmonary disease: A phenomenological study

Rosa

Bagnasco

Ghirotto

et al. 2018

Journal of Clinical Nursing

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For healthcare professionals, it is important to take into account the potential feelings of loss, hopelessness and uncertainty that people can experience following an acute exacerbation of their chronic obstructive pulmonary disease and ensure that psychological care is available as physical recovery takes place. Such care to include good discharge planning, giving patients time to express concerns and referral to counselling services if appropriate.

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Does respite care address the needs of palliative care service users and carers? Their perspectives and experiences

Abstract: A reframing of respite care as an empathic response within a new palliative care approach is proposed. Within this, the centrality of the relationship is reinforced.

Cited by 7 publications

References 51 publications

Facilitating social coping‐‘seeking emotional and practical support from others’‐as a critical strategy in maintaining the family care of people with dementia

Facilitating social coping‐‘seeking emotional and practical support from others’‐as a critical strategy in maintaining the family care of people with dementia

The impact of respite care from the perspectives and experiences of people with amyotrophic lateral sclerosis and their care partners: a qualitative study

Experiences of older people following an acute exacerbation of chronic obstructive pulmonary disease: A phenomenological study

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