Ting-Yu Huang1, Pei-Fan Mu, Yi-Wei Chen. 1. Author Affiliations: Taipei Veterans General Hospital (Mrs Huang and Dr Chen); and Institute of Clinical Nursing (Dr Mu) and Department of Medicine (Dr Chen), National Yang Ming Chiao Tung University, Taipei, Taiwan, Republic of China.
Abstract
BACKGROUND: A pediatric brain tumor requires multimodal therapy that can have serious effects on the ill child that can involve shared decision-making (SDM). Understanding this experience of SDM from the parents' point of view is understudied. OBJECTIVE: The aim of this study was to explore the nature of lived experiences of parents during the SDM process when their child is being treated for a brain tumor. METHODS: This was a descriptive phenomenology study using in-depth interviews with parents who had a child with a brain tumor. RESULTS: Six major themes emerged: (1) early confusion associated with medical decision-making, (2) determining treatment via decision-making, (3) faith strengthening the direction of decision-making, (4) constructing consensus based on partnership, (5) adjusting lifestyle to coexist with the illness, and (6) positive energy and abundant support are able to open a window to the soul. CONCLUSION: Shared decision-making is a process, and the experiences start with parental confusion about medical treatment. The process involves building a trusting relationship with health professionals that includes sharing medical treatment information and is eventually associated with normalizing the life of both the child and the rest of the family. IMPLICATIONS FOR PRACTICE: Trusting relationships and partnership are vital for SDM to be successful. It is essential during the SDM process to strengthen parental resilience by supplying sufficient information and to support parental efforts to normalize their family life.
BACKGROUND: A pediatric brain tumor requires multimodal therapy that can have serious effects on the ill child that can involve shared decision-making (SDM). Understanding this experience of SDM from the parents' point of view is understudied. OBJECTIVE: The aim of this study was to explore the nature of lived experiences of parents during the SDM process when their child is being treated for a brain tumor. METHODS: This was a descriptive phenomenology study using in-depth interviews with parents who had a child with a brain tumor. RESULTS: Six major themes emerged: (1) early confusion associated with medical decision-making, (2) determining treatment via decision-making, (3) faith strengthening the direction of decision-making, (4) constructing consensus based on partnership, (5) adjusting lifestyle to coexist with the illness, and (6) positive energy and abundant support are able to open a window to the soul. CONCLUSION: Shared decision-making is a process, and the experiences start with parental confusion about medical treatment. The process involves building a trusting relationship with health professionals that includes sharing medical treatment information and is eventually associated with normalizing the life of both the child and the rest of the family. IMPLICATIONS FOR PRACTICE: Trusting relationships and partnership are vital for SDM to be successful. It is essential during the SDM process to strengthen parental resilience by supplying sufficient information and to support parental efforts to normalize their family life.