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

Abstract

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.

The spiritual dimension of parenting a child with a life-limiting or life-threatening condition: A mixed-methods systematic review

“…The vast majority of articles are based on qualitative research ( n = 47). 38 , 39 , 41 , 42 , 44 , 46 – 52 , 54 – 59 , 61 – 63 , 65 , 66 , 68 – 70 , 72 , 74 – 78 , 80 , 82 – 84 , 86 , 88 , 90 – 97 , 99 Eleven articles report a quantitative observational study. 40 , 43 , 45 , 53 , 67 , 71 , 73 , 85 , 87 , 89 , <...…”

“… 50 , 52 , 53 , 55 , 61 , 66 , 68 , 75 , 85 , 92 , 93 , 95 , 100 Six studies were from South America, 54 , 57 , 62 , 80 , 84 , 90 , three from Australia. 51 , 56 , 65 In total, the studies report on the perspectives of 2355 parents. An overview of the characteristics of the included studies is presented in Table 1 .…”

“…52,99 They also described feeling torn, guilty, and heartbroken, because they might not have lived up to the expectations they had set for themselves and their families. 56,68,76,81,92,95 The need for spiritual support in relation to existential challenges. Several articles reported a need for structures that provided stability when facing existential challenges.…”

“…There was the new world which revolved around the caring and other requirements of their child and their old world that did not. 56 , 66 , 68 , 100 This brought existential challenges in their personal life. Parents put personal needs second, experiencing limited opportunities to continue their own life because of their child’s needs.…”

Education and Mentoring of Specialist Pediatric Palliative Care Medical and Nursing Trainees: The Quality of Care Collaborative Australia

“… 10 Families have expressed their appreciation for this burgeoning network of care for their ongoing support, regardless of their residential location. 11 …”