Focusing on the hospital stay or everyday life with cancer: Parents’ experiences of choosing a central access device for their child with cancer

Abstract

Purpose: The aim of this study was to gain insights into the experiences of parents of children with cancer in conjunction with their decisions on the type of central access device that their child would have. Design and Methods: The qualitative study design was chosen to maximize the likelihood of capturing the full range of the phenomenon, that is the parents' experiences from decision-making. Open interviews were conducted between December 2015 and January 2016 with 17 parents of children who had been diagnosed with cancer in 2014-2015. The interviews were analyzed using inductive qualitative content analysis. Results: The analysis of the decision-making process data yielded four subcategories: (a) Feeling overwhelmed owing to limited information and alienation within the healthcare system, (b) the burden of making a quick medical decision without having the big picture, (c) receiving conflicting views and approaches from the healthcare professionals, and (d) including the child's perspective. Those four subcategories were condensed into the following main category: focusing on the hospital stay and treatment or on everyday life with cancer.

The Childhood Cancer Centre Is Coming Home: Experiences of Hospital-Based Home Care

“…In Sweden, approximately 370 children suffer from cancer each year [ 1 ]. The diagnosis of cancer can be experienced as chaotic for the child and the family [ 2 ]. For most children and families, a cancer diagnosis leads to a transition to unpredictable everyday life with many hours in hospital [ 2 , 3 ].…”

“…The diagnosis of cancer can be experienced as chaotic for the child and the family [ 2 ]. For most children and families, a cancer diagnosis leads to a transition to unpredictable everyday life with many hours in hospital [ 2 , 3 ]. However, hospital-based home care can be offered as a viable alternative to hospital care.…”

Parents’ experiences of being involved in medical decision-making for their child with a life-limiting condition: A systematic review with narrative synthesis

“…48,50,57 In some cases, anger and frustration were associated with the feeling of not being listened to or being manipulated into a decision by professionals. 44,53 Guilt. Being a parent of a child with a life-limiting condition and making decisions about their healthcare was connected with the feeling of guilt.…”

“…44,49 Parents who thought they were coerced into decision-making felt anger, bitterness and distress and they described their experience as horrific and painful. 44,49,62,63 Difficulty grasping the reality. Parents struggled with the reality of the situation when they were making decisions.…”

“…35,38,44,49,56,59,60,61 Parents were often required to make decisions under time pressure and with a sense of urgency. 35,44,60,61 Decisions made under time pressure included the Do Not Resuscitate status, an agreement to start an oncology treatment, a placement of a central access device and end-of-life decisions. 35,44,60,61 The lack of time meant that, in some studies, parents felt like they did not have enough information to make an informed decision and they would have preferred to have more time.…”