Abstract
Date Presented 4/7/2016
This research explored parents’ perceptions of the effect their child’s disability has on their family. Results revealed their perceptions and experiences related to adaptation, challenges, and care management. This insight into the health of the family is beneficial to practice.
Primary Author and Speaker: Tina Mankey
Additional Author and Speaker: Brittany Saviers
The purpose of this study was to explore parents’ perceptions of the impact their child’s disability has on their family dynamics and lifestyle. Occupational therapy (OT) practitioners are ideally positioned to work with families of children with disabilities to promote health and well-being of the entire family unit.
Despite widespread recognition of the importance of considering parents’ perspectives, family-centered care continues to be insufficiently implemented across the health care continuum (Cohn, Kramer, Schub, & May-Benson, 2014; Lotz, Bellin, & Oswald, 2010).
This study utilized a convergent parallel mixed-methods design to provide a comprehensive analysis and description of the different perspectives drawn from parent interviews regarding their children.
Participants included 28 parents of children ages birth–21 yr who had a documented diagnosis and resided in a southern rural state.
An interview guide was developed on the basis of the literature and previous experiences of the researchers. The semistructured interview guide had 11 questions pertaining to parents’ perceptions and knowledge of their child’s disability and the influence of their disability on their home and family life in various environments. Flexibility was allowed within the interview structure for probing and additional queries to expand upon important participant views.
All interviews were conducted during a single face-to-face session and were transcribed within a 1-mo time period. Primary researchers and a research assistant independently coded data with relevance to the interview script. A coding taxonomy was established between researchers as a method of verification. Content analysis was used to reveal patterns and themes in the data.
Utilizing intercoder agreement, the researchers compared and reconciled any differences. An outside independent reviewer was used to ensure validity and accuracy of the analysis and interpretation. In addition, quantitative methods were utilized to examine the frequency of specific responses within the interview process.
The results revealed the major themes in parents’ perceptions and experiences related to (1) adaptation, (2) challenges, and (3) care management within the family unit. The mixed-methods results indicated themes and frequencies in the participants’ lived experiences within each of these categories, providing OT practitioners with insight into the importance of understanding and valuing the contexts in which families and children with disabilities live.
In conclusion, family-centered care focused on the overall health and well-being of the entire family unit is recognized as one of the most effective service delivery models for children with disabilities and their families (Lotz et al., 2010). The parent voices presented in this study provide practitioners with insight into particular areas of importance to families that can improve health outcomes and service delivery when implemented into clinical practice. The impact of these findings promotes understanding of parents’ values, hopes, concerns, and challenges, which are crucial in guiding OT services that consider the family’s health and well-being along with the child’s needs.
Results urge practitioners to implement these principles in practice
References
Cohn, E. S., Kramer, J., Schub, J. A., & May-Benson, T. (2014). Parents’ explanatory models and hopes for outcomes of occupational therapy using a sensory integration approach. American Journal of Occupational Therapy, 68, 454–462. http://dx.doi.org/10.5014/ajot.2014.010843
Lotz, G. M., Bellin, M. H., & Oswald, D. P. (2010). Family-centered care for children with special health care needs: Are we moving forward? Journal of Family Social Work, 13, 100–113. http://dx.doi.org/10.1080/10522150903487099
