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Parents' experiences of paediatric palliative care in the community healthcare system: a qualitative study
Stine Andreassen Rud1, Eirin Skagestad1, May Aasebø Hauken2
1Center for Crisis Psychology, Faculty of Psychology, University of Bergen, Bergen, Norway.
Insights
Parents found community pediatric palliative care (PPC) limited and fragile, often lacking coordination and flexibility. Improving PPC requires better integration of hospital and community services, early involvement, and a family-centered approach for children with life-limiting illnesses.
Area of Science:
- Pediatric Palliative Care
- Community Healthcare
- Family-Centered Care
Background:
- Life-limiting illnesses in children are rare but pose significant burdens on families.
- Paediatric palliative care (PPC) aims to enhance quality of life for ill children and their families.
- Most families prefer home-based care, yet community PPC knowledge, especially from parents' perspectives, is limited.
Purpose of the Study:
- To explore parents' experiences with community-based paediatric palliative care (PPC).
Main Methods:
- Qualitative interpretive descriptive study.
- Semi-structured interviews with 11 parents of children with life-limiting illnesses post-bereavement.
- Systematic text condensation for data analysis, adhering to QOREQ guidelines.
Main Results:
- Parents described interactions with hospital and community services, often feeling unmet needs.
- Experiences included the increasing complexity of the child's needs and the end-of-life phase.
- Parents desired a normal life despite their unordinary circumstances.
Conclusions:
- Community PPC was perceived as limited, fragile, and lacking flexibility and coordination.
- Improvements suggested include early community healthcare integration, enhanced care coordination, and a stronger family focus.
- Optimizing PPC necessitates better accessibility, flexibility, and coordinated community services.
Background:
Having a child with a life-limiting illness is a situation that is relatively rare and represents a multidimensional burden on the family. Paediatric palliative care (PPC) aims to maintain the quality of life for the ill child and the family. Traditionally, most PPC has been provided at a specialist healthcare level, but research indicates that most families wish to spend as much time at home as possible. However, we have limited knowledge of PPC in community healthcare, especially from the parent's perspective. This knowledge is important to provide optimal home-based PPC.
Objectives:
To explore parents' experiences of PPC within the community healthcare system.
Design:
Qualitative study with an interpretive descriptive design.
Methods:
In all, 11 parents of children with different life-limiting illnesses were interviewed after the child's death using a semi-structured interview guideline. Data were analysed using systematic text condensation. Consolidated criteria for reporting qualitative research (QOREQ) was followed.
Results:
The parents' experiences were captured in five main themes: (i) 'Interaction with hospital and community services', (ii) 'Parents did not always get the help they needed', (iii) 'The child's needs became increasingly complex', (iv) 'When the end came' and (v) 'The parents asked for an ordinary life in an unordinary situation'. Each main theme was further elaborated by two subthemes.
Conclusion:
Overall, the parents experienced PPC in the community as limited and fragile, and as lacking flexibility, coordination and professional competence related to the children's complex needs. There appears to be potential for improvement in PPC through improved care coordination between the hospital and the community healthcare services, involving the community healthcare system at an early timepoint in the illness trajectory, including a family focus, and providing accessibility, flexibility and care coordination of community services.
Registration And Reporting Guidelines:
The study is registered in the institutional system for research project (RETTE; ID number F2082).
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