The Physical Health of Caregivers of Children With Life-Limiting Conditions: A Systematic Review

Hartley, Julie; Bluebond-Langner, Myra; Candy, Bridget; Downie, Jonathan; Henderson, Ellen M

doi:10.1542/peds.2020-014423

Cited by 22 publications

(18 citation statements)

References 129 publications

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“…The aim of this study was to explore mothers’ accounts of their physical and mental health and to identify how, and by whom, their own wellbeing should be addressed. Previous research tells us about the types of physical and mental health conditions present in this population 7 , 14 but these conditions have rarely been explored qualitatively. In this study, mothers described a healthcare system that did not accommodate their needs as caregivers.…”

Section: Discussionmentioning

confidence: 99%

The health of mothers of children with a life-limiting condition: A qualitative interview study

2022

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Background: The number of children with a life-limiting condition is increasing. The mothers of these children commonly provide extensive care at home for their child and are at a higher risk of poor health than other mothers. The impact of this is rarely explored from mothers’ perspectives. Aim: To explore mothers’ accounts of their physical and mental health, experiences of accessing healthcare and who they think should support their health. Design: Qualitative semi-structured interviews were conducted and analysed using thematic analysis. Setting/participants: Thirty mothers of children with a life-limiting condition were recruited via three UK children’s hospices and social media. Results: Mothers felt that their health concerns could be misunderstood by professionals, describing untimely and inappropriate support that failed to recognise the nature of caring for a child with a life-limiting condition. This led to mothers’ reluctance in addressing these concerns. Mothers felt unable to prioritise their own needs, relative to those of their child and worried about who would look after their child if they did become unwell. They described stress as a result of battles with services rather than as a result of caregiving. Mothers valued feeling recognised as caregivers, which made it easier to look after their health alongside their child’s. Hospice support was particularly valuable in this respect. Conclusions: A more unified system that recognises not only the unique set of challenges presented to mothers caring for a child with a life-limiting condition, but the value of palliative care services in supporting these mothers, is required.

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Section: Discussionmentioning

confidence: 99%

The health of mothers of children with a life-limiting condition: A qualitative interview study

2022

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“… 32 A solely clinical model of palliative care will not address the issues of carer burden and social isolation as described by parents in this and other studies. 24 , 36 We argue that SPPC services have a role to play in partnering with families caring for a child with an LLC, generalist palliative care and compassionate communities to activate and educate networks of care equipped with knowledge and skills of death, dying and bereavement in a child and family’s community.…”

Section: Discussionmentioning

confidence: 99%

Building capability in paediatric palliative care and enhancing education through the voice of parents: the Quality of Care Collaborative Australia

et al. 2022

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Background: The greater proportion of children with a life-limiting condition (LLC) and their families want to remain at home as much as possible. Building capability in paediatric palliative care (PPC) for generalist health and social care professionals in nonmetropolitan regions through the Quality of Care Collaborative Australia (QuoCCA) has improved access to palliative care for families, regardless of where they live. Aim: To understand the experience of families whose child has received specialist PPC, to ensure future service capability development is informed by lived experience. Design: A retrospective, descriptive study in which parents participated in a semi-structured telephone interview guided by Discovery Interview methodology. Inductive thematic analysis identified the major learnings from participants. Participants: Parents caring for a child referred to the specialist PPC service, who received a pop-up visit and whose child is stable or who are more than 6 months bereaved. Results: Eleven parents ( n = 9 mothers; n = 2 fathers) of children with an LLC ( n = 5) or whose child had died ( n = 6) participated in an interview. The overarching themes and subthemes were as follows: (1) burden of suffering, in which parents described grieving for the life once anticipated, confronting many life transitions and seeking quality of life for their child and (2) umbrella of support, in which parents built partnerships with professional support, activated a network of care around their family and sought responses to their whole family’s needs. Conclusion: Parents caring for a child with an LLC described significant personal, familial, social and existential adjustments. This study integrates a relational learning approach with QuoCCA education grounded in the relationships between children, families and professionals. Learning from lived experience in PPC education enhances the preparedness of generalist health and social care professionals to join a child and their family throughout their various life transitions and facilitates the goal to remain at home within their community for as long as possible. Education in PPC is an imperative component of service models, enabling regional services to gain confidence and capability in the context of a dying child and their family, empowered and informed through the voice of the family. Plain Language Summary Enhancing palliative care for children through education informed by the experience of families It is often the wish of many children/young people with a life-limiting condition to stay at home with their families as much as possible. It is important that specialist palliative care services provide training and mentoring to the family’s local care professionals to support the delivery of good care, particularly those in rural and remote areas. This article aims to integrate the lived experience of families with palliative care education, so that the education reflects and addresses the needs that they express. Parents were interviewed by telephone using a method called Discovery Interviews. This is an open interview process, guided by a spine that describes the main points of palliative care. Parents can openly talk about their experience, focusing on the areas that are important to them. Interviews were studied by four researchers, and emerging themes were discussed and summarised. The study included parents whose child/young person was receiving support from specialist palliative care and bereaved parents whose child had died more than 6 months ago. In total, eleven parents (nine mothers and two fathers) were interviewed, five participants had children currently receiving palliative care and six were bereaved. The overarching themes were as follows: Burden of suffering, in which parents described grieving for the life they had expected, confronting transitions and seeking good quality of life for their child. Umbrella of support, in which parents built partnerships with care teams and activated a network of care to address the needs of their whole family. This study allowed the families’ perspectives to be integrated into the palliative care education of care professionals in the family’s local area. The lived experience of families prepared care professionals to support families with the care of their child/young person, allowing them to remain at home as long as possible.

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“…It is difficult to determine if this is related to the pandemic or child's medical complexity in this sample. However, researchers found that parents of CMC, compared with parents of CSHCN and non-CSHCN, were at a much higher risk for developing mental health issues ( Bayer et al, 2021 ; Hartley et al, 2021 ). The qualitative responses by parents in this study suggest that the pandemic has had a negative impact on their mental health and wellbeing.…”

Section: Discussionmentioning

confidence: 99%

“…Although not specifically researched in parents of CSHCN, the health risks of stress have been documented and a recent systematic review found that the effects included poor general physical health, increased pain and disability, lower quality of life, and higher risk of all-cause mortality ( Garfin, Thompson, & Holman, 2018 ). Recently, a systematic review by Hartley et al (2021) found that in 84% of the studies, caregiver health was negatively impacted, with pain and sleep problems leading the list.…”

Section: Introductionmentioning

confidence: 99%

Parenting a child with a chronic illness during a pandemic

Gallegos

Aldridge

Connor

et al. 2022

Journal of Pediatric Nursing

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The Physical Health of Caregivers of Children With Life-Limiting Conditions: A Systematic Review

Cited by 22 publications

References 129 publications

The health of mothers of children with a life-limiting condition: A qualitative interview study

The health of mothers of children with a life-limiting condition: A qualitative interview study

Building capability in paediatric palliative care and enhancing education through the voice of parents: the Quality of Care Collaborative Australia

Parenting a child with a chronic illness during a pandemic

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