A qualitative study of child participation in decision-making: Exploring rights-based approaches in pediatric occupational therapy

Abstract

Background According to Article 12 of the United Nations Convention on the Rights of the Child, therapists are duty-bound to include children in decisions that impact them. Although occupational therapists champion client-centred, collaborative practice, there remains a paucity of studies detailing children’s rights and experiences of decision-making in pediatric occupational therapy. Purpose This qualitative study described the decision-making experiences of children, parents and therapists in occupational therapy. Methods Semi-structured interviews were conducted with 17 participants (six children, five parents and six occupational therapists), and data analysed using thematic analysis. Findings Three themes emerged: 1) Goal-setting experiences; 2) Adults: child-rights gatekeepers or defenders? and 3) Decision-making in context. Findings suggest that decision-making is mostly adult directed, and children’s voices are subsumed by adult-led services, priorities, and agendas. Implications Children’s rights need to be embedded as an aspect of best practice in providing services that are child-centred in occupational therapy practices and education.

Exploring Therapeutic Relationships in Pediatric Occupational Therapy: A Meta-Ethnography

“…The experience of being heard by the occupational therapist was also very significant as it allowed them to express themselves and communicate more effectively ( Shea & Jackson, 2015 ). Being heard is also meaningful given it has a positive impact on children reaching their goals ( O’Connor et al, 2021 ). However, some children reported negative experience where the therapist made decisions for them or told them what to do ( Shea & Jackson, 2015 ).…”

“…However, some children reported negative experience where the therapist made decisions for them or told them what to do ( Shea & Jackson, 2015 ). Additionally, some children expressed their desires about the direction of therapy but were not listened to, as noted by O’Connor et al (2021) .…”

“…The power relationship emerged as a recurring theme when children, caregivers, and occupational therapists shared their experiences of the therapeutic relationship. Families valued holding power in the relationship and wanted occupational therapists to recognize their choices and autonomy ( O’Connor et al, 2021 ; Shea & Jackson, 2015 ). Some families remained with the feeling that the occupational therapist was the expert and should lead the decision-making ( Andrews et al, 2013 ; King et al, 2021 ; O’Connor et al, 2021 ).…”

“…Families valued holding power in the relationship and wanted occupational therapists to recognize their choices and autonomy ( O’Connor et al, 2021 ; Shea & Jackson, 2015 ). Some families remained with the feeling that the occupational therapist was the expert and should lead the decision-making ( Andrews et al, 2013 ; King et al, 2021 ; O’Connor et al, 2021 ). However, the general experience of families suggests that they wanted to have control and be involved in decisions.…”

Children's and young people's experiences of expressing their views and having them heard in health care: A deductive qualitative content analysis

“…The desire to protect children, particularly those who are vulnerable, is strong but can result in boundaries around children that silence them (James et al., 2007). Despite the reported benefits of being included in healthcare decision‐making (Bjønness et al., 2020; David et al., 2018; Miller & Jawad, 2019) and children's capacity and desire to have a voice in their care (Coyne & Gallagher, 2011; Foster et al., 2022; Kilkelly & Donnelly, 2006; Viksveen et al., 2022), children are still routinely excluded (Coyne et al., 2014; Kilkelly & Donnelly, 2011; Lundberg et al., 2021; O'Connor et al., 2021). Additionally, children's views are often excluded from service evaluations, even when the views of their parents are taken into consideration (Nordlind et al., 2022; Schalkers et al., 2016; Starlight Children's Foundation, 2021).…”