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

BACKGROUND: Professionals providing self-management support to parents regarding the care for their child with a chronic condition nowadays is an important aspect of child healthcare. This requires professionals to orient themselves towards partnership and collaboration with parents. The aims of the current study were the development and validation of the S-Scan-Parental self-management Support (S-scan - PS) as a tool for healthcare professionals to reflect on their attitude and practices regarding the support for parental self-management. METHODS: An existing instrument was adapted together with field experts for professionals to self-evaluate their support for self-management of parents. The resulting 36-item self-report questionnaire was filled in by healthcare professionals in the Netherlands working with children and their parents. Cognitive interviews, exploratory and confirmatory factor analysis (CFA), and test-retest reliability analysis were part of the development and validation process. RESULTS: In total, 434 professionals, including physicians, physiotherapists, occupational therapists, and nurses, from 13 rehabilitation institutes and 5 medical centres participated. The cognitive interviews with child healthcare professionals indicated adequate face and content validity. The S-scan - PS scale had acceptable internal consistency (0.71 ≤ α ≤ 0.91) for the total score as well as the domain scores. CFA showed acceptable root mean square error of approximation (RMSEA) model fit (0.066), though not on other tested goodness-of-fit indices. Test-retest reliability of the instrument was moderate with an average intraclass correlation coefficient (ICC) = 0.61. CONCLUSIONS: The S-scan - PS fulfils important psychometric criteria for use by child healthcare professionals to reflect on parental self-management support. Such self-reflection might help to improve their approach towards supporting self-management of parents in the care for their child with a chronic condition. Further research is needed into the construct validity and test-retest reliability of the instrument.

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

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.

Managing oneself or managing together? Parents' perspectives on chronic condition self-management in Dutch pediatric rehabilitation services.

Purpose: With the growing attention in pediatric rehabilitation services for supporting self-management, the need increases for more shared understanding of the concept. The aim of this study was to explore parent activation, associated factors of- and underlying perceptions on parental self-management of parents of children with chronic conditions.Materials and methods: Using a mixed-methods strategy, first variations in self-management behaviors, motivation and perceived autonomy support were assessed with a cross-sectional survey among parents of children with chronic conditions (N = 239). Statistical analysis involved descriptive statistics and univariate analysis of variance. The survey was followed by 18 in-depth interviews with parents. Thematic analysis was used to recognize relevant topics in the qualitative data.Results: In the survey most parents reported being active self-managers. Nevertheless, only one third persisted in self-management when under stress. Autonomous motivation was strongly associated with parental self-management. In the interviews, parents mentioned attuning with professionals and finding balance as important aspects of self-management. To facilitate self-management, professionals were expected to have expert knowledge, be engaged and empathic.Conclusion: From the perspective of parents, self-management should be viewed as a collaborative effort in which they are supported by professionals, rather than having to manage it "by themselves".Implications for rehabilitationTo facilitate self-management, parents expect professionals to have expert knowledge and additionally show interpersonal competences as openness, engagement and empathy.Motivating parents may facilitate their level of self-management regarding the care for their child with a chronic disorder.Good communication and collaboration with professionals appear to be key aspects of parental self-management.Parents expect pediatric rehabilitation teams to tune their services to the needs, desires and expectations of parents to support them in "self-managing" the care for their child.