The participation of parents of disabled children and young people in health and social care decisions

Abstract

Parents in this research recounted positive as well as negative experiences. Parents took on a protective role when decisions were made about their son or daughter and at times, reported the need to "fight" for their child. The provision of information remains problematic for these families, and at times, this created a barrier to parents' participation in decision making. Partnership approaches to care that recognize parents' expertise are particularly important to parents when decisions are made with professionals.

Parents’ Expressions of Concerns and Hopes for the Future and Their Concomitant Assessments of Disability in Their Children

“…In particular, interventions and support to the whole family are important and can positively affect a family and a child's quality of life. [1][2][3][4][5] The 'F-words' -function, family, fitness, fun, friends and future -illustrate the importance of support tailored to each individual family and child. [19][20][21][22][23] Because support for children and families is crucial to their present daily living and their future, we wanted to find ways to Issue is the number of issues under each subsection.…”

“…For codes at which the level of hopes and concerns for the child or the child's disability level is higher or lower, the relevant logit value will be positive or negative, respectively. [4][5][6][7][8] A logit scale constitutes the latent construct or variable (also called the measure in Rasch terminology) for the parents' hopes and concerns qualifiers as well as the 26 joined ICF-CY b and d codes.…”

“…First, the documented finding that parents seek qualitative and inclusive care, including understanding of family needs, social support, coping strategies, involvement in decisions, and avoidance of fighting for their children, [1][2][3][4][5] applies to our group of parents as well. These desires are represented in sections regarding community support, social issues, and social tasks, and there is a strong emphasis on understanding, goodwill, and communication (Table 2).…”

“…4 Parents should be fully involved in decisions on behalf of their children's health and social care, and furthermore they should be able to avoid the need to fight for their children. 5 Second, hope may be experienced and expressed in different terms according to different circumstances. Thus, hope is strongly correlated to cure, as well as to the idea that the child will feel loved and that the parents will always do the best for their child.…”

Ethical considerations when conducting research with children and young people with disabilities in health and social care

“…This paper seeks to add to the literature in this area by critically discussing the ethical issues that arose during the conduct of doctoral research that aimed to explore the experiences of disabled children, young people and their parents in health and social care decisions, the findings of which are published elsewhere (see McNeilly et al 2015 andMcNeilly et al 2017).…”