ABSTRACT
This article explores the grief process of parents following the death of a child due to a life-limiting illness, putting particular focus on dyadic coping. Participants included 46 married parents (23 couples). A mixed-methods design was used with in-depth interviews and standardized questionnaires. All parents were interviewed separately. Aspects of common dyadic coping (e.g., sharing emotions or maintaining bonds to the child) helped them work through their grief as a couple but also individually. The authors conclude that dyadic coping plays an important role in grief work and adjustment to bereavement.
Subject(s)
Attitude to Death , Bereavement , Critical Illness/psychology , Grief , Interpersonal Relations , Marriage/psychology , Parent-Child Relations , Parents/psychology , Adaptation, Psychological , Adolescent , Adult , Child , Child, Preschool , Cross-Sectional Studies , Death , Emotional Intelligence , Female , Humans , Infant , Interview, Psychological , Male , Middle Aged , Social Support , Surveys and Questionnaires , SwitzerlandABSTRACT
UNLABELLED: The main objectives of this qualitative study were to describe the perceptions and needs of pediatric health care professionals (HCPs) taking care of children with palliative care needs and to develop a concept for the first Center of Competence for Pediatric Palliative Care (PPC) in Switzerland. Within two parts of the study, 76 HCPs were interviewed. The main interview topics were: (1) definition of and attitude toward PPC; (2) current provision of PPC; (3) the support needs of HCPs in the provision of PPC; and (4) the role of specialized PPC teams. HCPs expressed openness to PPC and reported distinctive needs for support in the care of these patients. The main tasks of specialized PPC teams in Switzerland would encompass the coaching of attending teams, coordination of care, symptom control, and direct support of affected families during and beyond the illness of their child. CONCLUSION: This study indicates the need for specialized PPC in Switzerland both inside and outside of centers providing top quality medical care (Spitzenmedizin). Specialized PPC teams could have a significant impact on the care of children and families with PPC needs. Whether hospices are an option in Switzerland remains unanswered; however, a place to meet other families with similar destinies was emphasized.
Subject(s)
Adolescent Health Services , Child Care , Health Services Needs and Demand , Palliative Care , Adolescent , Child , Humans , Qualitative Research , Surveys and Questionnaires , Switzerland , WorkforceABSTRACT
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.
