Key Factors Affecting Dying Children and Their Families

Abstract

The death of a child alters the life and health of others immediately and for the rest of their lives. How a child dies influences parents' abilities to continue their role functions as well as siblings' abilities to make and maintain friendships, and may be the basis for health care providers' decisions to exit direct care roles. Thus, facilitating a "good death"-an obvious care priority for all involved with the dying child-ought also to be a priority for the health of bereaved families and affected health care providers. Making this a care priority is complicated by a serious lack of data, as details of the last hours or weeks of a dying child or adolescent's life are largely unknown. The purpose of this paper is to identify key factors that affect the course of dying children and adolescents and that of their bereaved survivors, and to link those key factors to needed research that could produce clinically relevant findings to improve the care of these patients. Key factors described here include suffering (physical, psychological, and spiritual), communication, decision making, prognostic ambiguities, ability of the seriously ill child to give assent to research participation, and educational preparation of health care providers to give competent end-of-life care.

Development, Feasibility, and Acceptability of the Family/Adolescent-Centered (FACE) Advance Care Planning Intervention for Adolescents with HIV

“…18,47 Communication and decision making are key factors affecting dying children and their families. 48 Research in this area has been inhibited by the anxiety-provoking and sad nature of the topic. 49 Consistent with previous research, the results of this study demonstrate the positive contribution of conversations about EOL care, providing a model for therapeutic benefit to families who want help with ACP.…”

Do-Not-Resuscitate Orders and/or Hospice Care, Psychological Health, and Quality of Life among Children/Adolescents with Acquired Immune Deficiency Syndrome

“…46 Although no peer-reviewed, evidenced-based, family-centered program currently exists to help families of adolescents with life-threatening illnesses speak directly and honestly about end-of-life care,47 family centered advance care planning is being piloted with HIV positive adolescents and their families to close this gap.…”

Percepção dos sintomas e sofrimento no fim da vida das crianças com câncer e repercussões nos cuidadores

“…Dessa forma, prevenir ou aliviar sintomas físicos ou psicológicos, é um modo de diminuir o sofrimento da criança que está morrendo, mantendo as atividades diárias da vida do paciente pelo tempo que for possível, confortando-a nesta trajetória Poles;Bousso, 2009), contribuindo para o bem-estar futuro dos familiares e da equipe de saúde que está testemunhando os momentos finais (Hinds et al, 2005;Contro et al, , 2004  ambiente institucional -Inclui a estrutura econômica e os sistemas políticos e sociais.…”

“…Pesquisas de Hilden et al (2000) e Hinds et al (2005) indicam a importância de se preparar a criança ou o adolescente para a morte O tempo que resta ao paciente é um fator determinante na programação da assistência e orientação do paciente e do cuidador.…”

“…A morte de uma criança gera um grande impacto e provoca mudanças imediatas e em longo prazo na vida dos pais e familiares (Curnick;Harris, 2000;Hinds et al, 2005 Mas o que vem a ser uma morte digna para uma criança? Pode-se analisar a partir de várias perspectivas: a da criança, a da família e a dos prestadores de cuidados de saúde.…”