PILOT TEST OF A PERSON-CENTERED PLANNING INTERVENTION DURING TRANSITION
Background: In an earlier ethnographic study we learned that youth with physical and developmental chronic conditions fall along a wide spectrum of abilities and needs, and their parents often struggled with setting achievable goals and gathering necessary information and resources in multiple domains, including health, education, employment, financial planning, residential planning, and recreation. Person-centered planning has shown promise as a strategy for individualized goal setting and achievement in health and education settings, but has rarely been tested in health-related research studies in the U.S.
Methods: Using Community-based Participatory Research strategies, we formed a partnership with a parent-run community agency that provides information and support to families raising children with chronic conditions. We developed an intervention to facilitate goal setting for the youth and family, and offered education sessions and follow-up referrals through the agency. This was coordinated by a Registered Nurse from the research team and a Community Resource Parent from the agency. Thirty families were enrolled, using a wait-list control group design. Feasibility and acceptability were assessed with interviews and surveys. We hypothesized that parents receiving the intervention would have improvements in confidence and competence in their abilities to access and use services and that they would have decreased worries and increased rewards of parenting compared to parents receiving usual services. Standardized and original instruments were used before and after the intervention.
Results: The intervention was feasible and acceptable to parents and youth. Parents stated that they found it helpful to systematically consider planning for transition, and to methodically consider their own goals and those of their adolescent. Compared to parents who had not received the intervention, those who received it showed statistically significant improvements (p<.05) in confidence and competence to access and use community-based services, a more positive future orientation, and increased knowledge and understanding of health care and educational services, financial planning, and recreation. There were no improvements in overall burden of care, or knowledge of employment or residential options.
Implications: This intervention shows promise for use in assisting youth and families during the transition to adulthood to set and accomplish individualized goals to facilitate a high quality of life in adulthood for youth with physical and developmental chronic conditions. Results indicate areas in which the intervention can be strengthened to further benefit families in the future. Person-centered planning strategies were acceptable and beneficial for youth and their parents. Positive outcomes in this low-power pilot study justify more extensive tests of effectiveness in future research.