A pre-test and post-test study of the physical and psychological effects of out-of-home respite care on caregivers of children with life-threatening conditions

Remedios, Cheryl; Willenberg, Lisa; Zordan, Rachel; Murphy, Andrea; Hessel, Gail; Philip, Jennifer

doi:10.1177/0269216314560008

Cited by 49 publications

(63 citation statements)

References 23 publications

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“…It can result in stress and isolation, negatively impacting upon the health, education, social wellbeing, family functioning, financial stability and quality of life of the whole family, including siblings and grandparents. These findings are congruent with previous research which adds that the effects can be lifelong (Thomas and Price, 2012;Remedios et al, 2015).…”

Section: Discussionsupporting

confidence: 92%

“…These findings support the literature which states that planned short breaks increase family resilience and reduce the stress and isolation experienced (Carter et al, 2013;Remedios et al, 2015).…”

Section: Discussionsupporting

confidence: 90%

“…Short breaks and emergency respite support are essential to increase resilience and decrease the risk of deterioration in health and wellbeing, carer breakdown or abuse (Carter et al, 2013;Remedios et al, 2015); preventing social care intervention, inappropriate hospital admission or costly out of home placement (Ling, 2012;Robertson et al, 2011). Having few, or no, appropriate alternative short break and emergency respite care options when children's hospice provision is not available, can have negative and far reaching consequences for young people with LLCs, their family and society.…”

Section: Conclusion and Recommendationsmentioning

confidence: 99%

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Short break and emergency respite care: what options for young people with life-limiting conditions?

et al. 2016

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What this paper adds: The paper recommends the availability of planned short breaks and appropriate emergency respite care for all young people with life-limiting conditions to prevent carer burnout, deterioration in health and wellbeing, and inappropriate hospital admission. This paper highlights the lack of appropriate short break and emergency respite care provision when children's hospice provision is not available for children's hospice users, and those making the transition from them. This is despite a clear need for this care provision being expressed by families, health and social care professionals and hospice staff. Implications for theory, practice or policy:Policy makers and funding bodies should review access to appropriate short break and emergency care provision from a range of services for young people with life-limiting conditions. Particular attention is needed for the increasing numbers of young people with life-limiting illnesses who are reaching the upper age limit of children's hospice service provision and requiring transition into adult services.

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Section: Discussionsupporting

confidence: 92%

Section: Discussionsupporting

confidence: 90%

Section: Conclusion and Recommendationsmentioning

confidence: 99%

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Short break and emergency respite care: what options for young people with life-limiting conditions?

et al. 2016

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“…There has been an increase in the number of children living with life-threatening conditions, in part owing to technological advances and medical progress, meaning that access to palliative care services is required across extended years [1]. In Ireland, recent evidence suggests that there are at least 3840 children living with a life-limiting condition [2].…”

Section: Introductionmentioning

confidence: 99%

“…Parents generally become expert in the clinical care of their child during an acute episode of care, however, there is evidence of burn-out within a short period of time following the transition to becoming the child’s primary care giver, with the potential for physical or mental ill health [3, 4]. Such caregivers report a significant improvement in psychological adjustment, fatigue and mental health quality of life following the provision of respite care [1]. This refers to the provision of care to children with a life-threatening condition for a specific period of time with the intent of providing temporary relief to the main carers and their family.…”

Section: Introductionmentioning

confidence: 99%

Family and healthcare professionals’ perceptions of a pilot hospice at home programme for children: a qualitative study

et al. 2016

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BackgroundParents commonly report a significant improvement in quality of life following the provision of hospice and supportive care and have identified a need for such a service in the home. The purpose of this study was to understand the experiences of families receiving a nurse led pilot hospice at home programme and the experiences of healthcare professionals delivering and engaging with the programme.MethodsAn exploratory, qualitative study was conducted, including telephone interviews with parents and focus groups and individual interviews with healthcare professionals. All parents of families who received the programme of care between June 2014 and September 2015 and healthcare professionals delivering and engaging with the programme were invited to participate.ResultsSeven parents participated in telephone interviews. Four focus groups took place, two with external stakeholders (18 participants in total), one with in-patient hospice staff (13 participants) and one with the hospice at home team (8 participants). Two additional interviews took place with individual stakeholders who were unable to attend a scheduled focus group. Themes from interviews with parents focused on the value of having consistent and expert care. The findings from healthcare professionals centred on communication within and across services, education and training and lone working.ConclusionsThe pilot hospice at home programme was welcomed by all those who took part in the study. The programme may be improved by enhanced clarification of roles, enhanced access to multi-disciplinary services, greater communication across services and improved information provision to families.

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Care at the End of Life for Children with Cancer

Bergstraesser

Flury

2017

Pediatric Oncology

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A pre-test and post-test study of the physical and psychological effects of out-of-home respite care on caregivers of children with life-threatening conditions

Abstract: Findings indicate the effectiveness of out-of-home respite care in improving the fatigue and psychological adjustment of caregivers of children with life-threatening conditions. Study outcomes inform service provision and future research efforts in paediatric palliative care.

Cited by 49 publications

References 23 publications

Short break and emergency respite care: what options for young people with life-limiting conditions?

Short break and emergency respite care: what options for young people with life-limiting conditions?

Family and healthcare professionals’ perceptions of a pilot hospice at home programme for children: a qualitative study

Care at the End of Life for Children with Cancer

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