Experiences of general practice of children with complex and palliative care needs and their families: a qualitative study

Mitchell, Sarah; Harding, Stephanie; Samani, Mohini; Slowther, Anne‐Marie; Coad, Jane; Dale, Jeremy

doi:10.1136/bmjopen-2020-041476

Cited by 4 publications

(5 citation statements)

References 13 publications

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“…The parents in our study recognize ID-PPC professionals as key personnel in their children's care. They describe how the lack of communication between professionals and services is one of the biggest problems they face, being perceived as a threat to their children's health [ 39 , 40 ]. Parents of children with cancer experience great difficulties in coordinating appointments and maintaining contact with the professionals themselves due to the lack of a designated person to coordinate care with the PPC team [ 38 ].…”

Section: Discussionmentioning

confidence: 99%

Understanding pediatric palliative care within interdisciplinary palliative programs: a qualitative study

et al. 2023

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Purpose To describe the process of delivery of pediatric palliative care from the perspective of a pediatric interdisciplinary team and the children’s parents. Methods A qualitative descriptive case study was conducted. Purposeful sampling took place within a specialized pediatric palliative care Unit in Madrid (Spain), located at the Niño Jesus Hospital. The study participants included a specialized pediatric palliative care team from Madrid's pediatric palliative care program, other professional teams involved in interdisciplinary care and parents of children under pediatric palliative care. Data were collected via semi-structured interviews, focus groups and researchers’ field notes. A thematic analysis was performed. Results This study included 28 participants (20 women, 8 men), of whom 18 were professionals who belonged to the pediatric palliative care interdisciplinary team, 4 professionals were from other units that collaborated with the pediatric palliative care, and 6 were parents (5 women, 1 man). The mean age of the pediatric palliative care members was 38.2 years (SD ± 7.9), that of the collaborating professionals was 40.5 (SD ± 6.8), and that of the parents was 44.2 (SD ± 5.4). Two main themes emerged: a) Pediatric palliative care has a distinct identity, associated with life. It represents the provision of special care in highly complex children, in the context of the home, far from the hospital environment; b) The team is key: its interdisciplinary organization provides a more comprehensive view of the child and their family, fosters communication among professionals, and improves coordination with other services involved in the care of children. The mindset shift experienced by ID-PPC professionals towards a palliative approach makes them more sensitive to the needs of their patients and leads them to develop specific skills in areas such as communication, decision-making, and adaptability that were identified as differentiating aspects of pediatric palliative care. Conclusions Describing pediatric palliative care from the professional and parental perspective helps to establish realistic and comprehensive goals for the care of children and their parents. The findings of this study may help with the establishment of a pediatric palliative care team, as a necessary organizational change in a health care system that cares for children with complex and life-threatening conditions. Promoting training in pediatric palliative care, prioritizing more horizontal organizations, providing tools and spaces for coordination and communication between professionals from different services, together with the creation of a position of case coordinator in the care process of children could enhance the understanding of pediatric palliative care services.

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Section: Discussionmentioning

confidence: 99%

Understanding pediatric palliative care within interdisciplinary palliative programs: a qualitative study

et al. 2023

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“…These concepts of relationships and partnerships between families and health-care professionals are reinforced in previous studies. 27 – 29 Remaining at home or as close to home as possible throughout their child’s life and facilitating a choice for their child to die at home is a theme affirmed in PPC literature, in which the normalcy of life can be held for all family members. 6 , 30 , 31 …”

Section: Discussionmentioning

confidence: 99%

“…These concepts of relationships and partnerships between families and health-care professionals are reinforced in previous studies. [27][28][29] Remaining at home or as close to home as possible throughout their child's life and facilitating a choice for their child to die at home is a theme affirmed in PPC literature, in which the normalcy of life can be held for all family members. 6,30,31 Enabling this goal requires a community that is aware, skilled and committed to responding to the health-care needs of the sick child and the social support needs of the family.…”

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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“…25 Others have shown the value of integrating general practice resources with PPC delivery. 26 However, the geographic challenges and overall limits to resources in non-metropolitan settings seem to further exaggerate many issues.…”

Section: Discussionmentioning

confidence: 99%

A Qualitative Study Describing Pediatric Palliative Care in Non-Metropolitan Areas of Illinois

Murday

Downing²,

Gaab

et al. 2021

Am J Hosp Palliat Care

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Background: There is little information about providing pediatric palliative care (PPC) in non-metropolitan areas. Objective: Describe the strengths of and challenges to delivering PPC in non-metropolitan communities and identify opportunities to improve care delivery. Design: A qualitative study involving focus groups (FGs) with PPC stakeholders. Setting/Participants: From 4 non-metropolitan areas in Illinois, we recruited 3 stakeholder groups: healthcare providers (HPs); bereaved parents; and parents caring for a seriously ill child (SIC). Measurements: At each site, we held an FG with people of the same stakeholder group and then an FG involving all stakeholders. Discussion topics included: availability and strengths of local PPC services, barriers to local PPC, opportunities for improving local PPC access and quality, and clinician educational needs. We analyzed data using phenomenology and directed content analysis. Results: Thirty people, 12 parents and 18 HPs, participated in FGs. Identified themes related to: PPC perceptions; availability and use of local resources; and challenges associated with travel, care coordination, and finances. Participants described benefits of and limits to local PPC including pediatric-specific issues such as attending to siblings, creating child peer-support activities, providing school guidance, and financing for PPC. Recommendations included suggestions to enhance care coordination, use existing resources, improve community and provider education, develop community networks, and minimize financial challenges. Conclusion: Unique PPC challenges exist in non-metropolitan areas. PPC in non-metropolitan areas would benefit from enhancing local resource utilization and quality. Future work should address the challenges to providing PPC in non-metropolitan areas with a focus on pediatric-specific issues.

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Experiences of general practice of children with complex and palliative care needs and their families: a qualitative study

Cited by 4 publications

References 13 publications

Understanding pediatric palliative care within interdisciplinary palliative programs: a qualitative study

Understanding pediatric palliative care within interdisciplinary palliative programs: a qualitative study

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

A Qualitative Study Describing Pediatric Palliative Care in Non-Metropolitan Areas of Illinois

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