Palliative care for children and adolescents in Switzerland: a needs analysis across three diagnostic groups

Abstract

The objective of this qualitative study was to explore the perceptions and needs of families who care for a child with a life-limiting disease. Considering the heterogeneity of life-limiting diseases in childhood, three diagnostic groups were defined: (a) cancer, (b) neurological disorders, and (c) non-cancer/non-neurological conditions. Fifteen parents whose child had been treated in one of four children's hospitals and received palliative care or had died within the previous 2 years were interviewed. The main interview topics were: communication with professionals, need for support in care (at home or hospital), and bereavement support. Irrespective of the center of care, parents of children with diagnoses other than cancer reported a lack of support concerning practical issues of care and psychosocial aspects. Parents of children with cancer expressed difficulties related to coordination of care especially when care was provided at home. Bereaved parents emphasized their wish for bereavement support. Our findings demonstrate shortcomings in pediatric palliative care in Switzerland and outline basic needs of affected families including psychosocial support, coordination of care and bereavement support. Based on these findings we formulate some suggestions on how to initiate pediatric palliative care in a most efficient way and tailored to the needs of families in Switzerland.

The needs of professionals in the palliative care of children and adolescents

“…In contrast to our first study, where we reported on parents' preference for home-based respite care [10] rather than respite care provided by designated hospice houses, a few respondents in the current study elaborated on the usefulness of a hospice as a place of respite care but also as a safe place for families to share their fate with others. Particularly physicians and professionals from psychosocial services mentioned the increasing difficulty of financing costly care at home.…”

“…The main goals of this study were to (1) describe the needs of pediatric HCPs taking care of children with palliative care needs, and (2) This study consists of two parts; Part 1was part of a larger project that included interviews with HCPs as well as with 15 parents whose child was receiving palliative care or was recently deceased [10]. Part 2 was developed on the basis of Part 1, to obtain a more detailed view of the needs of HCPs involved in the care of children with lifelimiting diseases.…”

“…The process of data analysis, using content analysis [18], has been described in more detail in the first publication [10]. Results are presented according to overarching themes which emerged from the analysis of the interviews.…”

Specialized Home Palliative Care for Adults and Children: Differences and Similarities

“…The latter diseases show highly variable courses, requiring a specific knowledge over a multitude of disorders, some of which are poorly characterized. [23][24][25][26][27] In our experience, the children's courses of disease are often characterized by recurrent crises, requiring frequent support by the SHPC team, which are intermitted by more stable phases with less SHPC contact. In contrast, SHPC for adult patients often starts in an acute phase late in the disease course with intense involvement of the SHPC team and a rather short time to death.…”

Patterns of diagnoses among children and young adults with life-limiting conditions: A secondary analysis of a national dataset

“…However, adolescents and young adults with LLC do have some unique physical and psychosocial needs 4,6 in particular in relation to sexuality and reproduction but also due to reliance on parents and loss of peer interaction due to hospital stays etc. These needs need to be addressed by specialist palliative care services.…”