1. Objectifs

Intentions :
« The purpose of this study was to examine mothers’ experiences of the care provided to their child with a life-limiting illness. This study explored mothers’ experiences in finding, accessing, and providing care for their children and their perceptions of gaps, barriers, and strengths in care for their children. As a secondary focus, this study looked at how these mothers understand pediatric palliative care. » (p. ii)

2. Méthode

Échantillon/Matériau :
« This study is based on a convenience sample of six participants who were mothers who had identified that they were currently caring for children (0-19 years of age) with life-limiting illnesses. [...]Three participants lived in Ontario and three lived in Quebec. » (p. 22-23)

Instruments:
Guide d’entretien semi-directif

Type de traitement des données :
Analyse de contenu

3. Résumé

Findings revealed that the experience of caring for a child with a life-limiting illness was overwhelming in nature for mothers in terms of finding, accessing, and providing care. Mothers expressed the overwhelming nature of the experience around three themes: (1) realizing the strengths and barriers of the health care system, (2) long-term caregiving and coping, and (3) advocacy. Experiencing the gaps and barriers and having to advocate for their own children led mothers to want to make change and give back so that other families would not have to face the same gaps and barriers as they had. Findings also revealed that mothers had diverse understandings of pediatric palliative care that had developed through their understanding of their own child’s illness and lifespan; adult palliative care; professionals’ communication about pediatric palliative care; and other experiences with pediatric palliative care, such as interacting with other families with a child with a life-limiting illnesses. Recommendations for change are made and areas for future research are identified. » (p. ii)