Professionals' motivation to support parental self‐management regarding children with physical disability in Dutch rehabilitation services: ‘Please mind your gap’

Abstract

Background Professionals in child healthcare increasingly endorse the support of self‐management in paediatric rehabilitation services for children with physical disability. Less understood though are their views regarding the role of the children's parents, as well as their own role in supporting parents. This study aimed to investigate the motivation of rehabilitation professionals to support self‐management of parents regarding their child with physical disability, professionals' beliefs about parental self‐management, and the perceptions underlying their motivation. Methods A mixed‐methods strategy was followed using a survey among rehabilitation professionals (n = 175) and consecutive semi‐structured interviews (n = 16). Associations between autonomous (intrinsic) versus controlled (extrinsic) motivation and beliefs on parental self‐management were tested. For deeper understanding of their motivation, directed content analysis was used to address key themes in the qualitative data extracts. Results Professionals reported autonomous motivation for parental self‐management support more often than controlled motivation (t[174] = 29.95, p < .001). Autonomous motivation was associated with the beliefs about the importance of parental self‐management (r = .29, p < .001). Approximately 90% of the professionals believed that parents should have an active role, though less than 10% considered it important that parents also are independent actors and initiative takers in the rehabilitation process. Interviews revealed that individual professionals struggled with striking a balance between keeping control and ‘giving away responsibility’ to parents. A ‘professional‐like’ attitude was expected of parents with ‘involvement’ and ‘commitment’ as essential preconditions. Furthermore, professionals expressed the need for additional coaching skills to support parental self‐management. Conclusion Professionals were predominantly autonomously motivated to support self‐management of parents. However, the dilemmas in giving or taking responsibilities within the partnership with parents may limit their effectiveness in empowering parents. Reflection on the potential gaps between professionals' motivation, beliefs and actual behaviour might be crucial to support parental self‐management.

Strategies supporting parent‐delivered rehabilitation exercises to improve motor function after paediatric traumatic brain injury: A systematic review

“…They found that around 90% of participants taking part in a mixed-methods study believed that parents should take an active role in their child's rehabilitation, whereas less than 10% considered parents taking the initiative and being independent actors in the rehabilitation process as being important. 53 The study additionally found that sharing responsibility could be difficult for professionals as they navigate maintaining authority and control with sharing responsibility with parents. This is echoed in the qualitative synthesis of literature carried out by Lord et al 54 relating to parent-delivered therapy interventions for children with cerebral palsy, which highlighted the need for support, trust, and shared decision-making in helping to build trusting relationships.…”

“…Such approaches to coproduction will go some way in helping to address power imbalances and better support parent self-management. 53 Future research should also seek to provide detailed descriptions about the content of interventions and the underlying theory to provide rigour and transparency to the design process and enable the replication of interventions. 24 This will help to develop further evidence about parent-delivered rehabilitation and suggest which BCTs and elements of interventions are particularly important in supporting behavioural change.…”

The development and validation of the S‐scan‐parental self‐management support (S‐scan ‐ PS): A self‐reflection tool for child healthcare professionals

“…The S‐scan ‐ PS should preferably be integrated within more extensive policies of healthcare institutes seeking to improve the delivery of family‐centred services. Importantly, such organisation‐wide strategies need to address the variety of expectations among the families they serve (Wong Chung et al, 2021).…”

“…Importantly, such organisation-wide strategies need to address the variety of expectations among the families they serve (Wong Chung et al, 2021).…”

“…Underlying these differences appears to be a common expectation from parents that healthcare professionals have an open attitude towards the level of self‐management and are supportive in any case (Wong Chung et al, 2020). Also, healthcare professionals vary in opinions on parental self‐management and the preferred degree of involvement of parents (Darrah et al, 2012; Wong Chung et al, 2021). This might affect their decisions to the actual support of self‐management (Bos‐Touwen et al, 2017).…”