Perspectives of parents on making decisions about the care and treatment of a child with cancer: A review of literature.

Abstract

This review focuses on parental decision making regarding the care and treatment of children with cancer. Articles were abstracted from the following sources: Ovid Databases (Cochrane Database of Systematic Reviews, Database of Abstracts of Review of Effects, Medline, and Social Work Abstracts) and EBSCOhost (Academic Search Premier and Academic Search Complete) using smart text. The criteria for the search were publications between 2005 and 2012 and publication in peer-review journals. The descriptors used were parents of children with cancer, decision making, decisions about childhood cancer, and parents. The search yielded 59 references, but after duplicates, as well as dated and irrelevant articles were removed, 17 articles were identified that focused specifically on the decisions parents make regarding the care and treatment of children with cancer. Coders agreed that the child's quality of life/well-being, parental hope/expectations, support/supportive care, communication, and information were important themes in considering the decisions parents made regarding the care and treatment of children with cancer. These themes provide insight into the needs of parents in making decisions about the care and treatment of children with cancer.

Patients’ decisional control over care: a cross‐national comparison from both the patients’ and nurses’ points of view

“…In several systematic literature reviews, the authors, in an attempt to examine desired as well as actual participation roles and the correlation between desired and actual roles in decision‐making among patients with cancer, found a large variation in patient role preferences in comparison to their actual roles . Similar inconsistencies have been found between the viewpoints of patients and health professionals , reporting that clinicians are not good at accurately assessing patients’ preferences, while patients may have unrealistic expectations about their clinician's ability to ‘know what is best’ for them .…”

Supporting Parent Caregivers of Children with Life-Limiting Illness

“…Even if it is unpleasant, parents prefer the truth. Parents want the truth presented in ways that they can understand and that “leave room” for hope [ 64 , 89 , 90 ]. Truth telling is not only the preference of parents, it is a moral imperative.…”

“…Truth telling is not only the preference of parents, it is a moral imperative. At times when telling the truth is difficult, PPC practitioners can consult with team members for support and remember that telling parents the truth gives them the information that they need to make the best decisions they can for their ill child [ 64 , 89 ]. Practitioners should also remember that they are part of a team and draw on the strengths of the team to support themselves and the family, conveying to parents that, “no matter what comes next, we will be here for you and your child” [ 35 ].…”

Insights from parents of a child with leukaemia and healthcare professionals about sharing illness and treatment information: A qualitative research study

“…Three factors described as contributing to restricted parents' communication with their child include: information overload and emotional turmoil, lack of knowledge and skills for disclosing the diagnosis, and assumptions about burdening the child when discussing cancer (Badarau et al, 2015). There is a clear dissonance between parents' desires to be informed, in order to make decisions about care and treatment and the steep learning curve and new language they face at diagnosis (Markward et al, 2013;McGrath 2002).…”