Resilience Through Relationships: Understanding Care for Children With Life-Limiting Illnesses

摘要

My research was an attempt to understand current structures of care for children with life-limiting illness through the experiences and perceptions of clinicians and family members. My hope was to better understand the perspectives of these individuals in order to identify the strengths and challenges of caring for these children. The qualitative research methodology employed was Social Science Portraiture (Lawrence-Lightfoot, 1997), a methodology that seeks to elicit individual stories for themes, voice, relationship, and context. Cross-case themes were also explored. Three interviews were conducted and the participant pool consisted of three parents, one sibling and two clinicians. Interviews were transcribed, coded and used to create a “portrait” of each interview in order to determine themes relevant to caring for children with life-limiting illnesses. Themes of human capacity and building relationships were present across all three portraits. My project adds to the small but growing field of research about children with life-limiting illnesses and their families. The implications of this study will hopefully inform future researchers and medical professionals as they seek to improve the quality of care offered to this population.