TY - JOUR
T1 - Managing oneself or managing together?
T2 - Parents' perspectives on chronic condition self-management in Dutch pediatric rehabilitation services
AU - Wong Chung, Ruud
AU - Willemen, Agnes
AU - Voorman, Jeanine
AU - Ketelaar, Marjolijn
AU - Becher, Jules
AU - Verheijden, Johannes
AU - Schuengel, Carlo
PY - 2020
Y1 - 2020
N2 - 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 rehabilitation To 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.
AB - 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 rehabilitation To 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.
KW - Parental self-management
KW - communication
KW - expectations
KW - motivation
KW - parent-professional interaction
KW - parents’
KW - partnership
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U2 - 10.1080/09638288.2019.1594396
DO - 10.1080/09638288.2019.1594396
M3 - Article
C2 - 30974978
SN - 0963-8288
VL - 42
SP - 3348
EP - 3358
JO - Disability and Rehabilitation
JF - Disability and Rehabilitation
IS - 23
ER -