Validity and Reliability of the Parent Activation Measure for Developmental Disabilities
Individuals with ASD are high users of medical services costing about $35 billion annually. Surprisingly, very little is known about the interactions between caregivers of children with ASD and their healthcare providers. Because high quality care is associated with informed decision-making, ways to assess and improve the knowledge of consumers concerning their healthcare problems is critical. “Activation” is one term used to operationalize consumer-directed healthcare decision-making. Consumers who are “activated” with skills, knowledge, and motivation are more effective in healthcare management. The objective of this pilot work was to develop a sensitive, valid, and reliable measure of parent activation so that we have effective ways to assess whether interactions with healthcare providers are based on activation and to determine whether activation was associated with decreased parent stress and improved self-management of their child.
1. To evaluate the reliability of a method of assessing parent activation.
2. To evaluate the associations between parent activation, parent stress, and parent self-management regarding their child.
Thirty-six parents of chldren with autism spectrum disorder between 3 and 12 years and who received a Therapeutic Programming Session (TPS) were asked to participate. TPS is a model of outpatient multidisciplinary service based on collaborative parent-child service planning and decision-making developed at the Kelly O’Leary Center for Autism Spectrum Disorders at the Cincinnati Children’s Hospital. The aims of TPS are to identify parent concerns, assist parents in obtaining services based on parent priorities and concerns and provide direction for navigating the complex service system. Parents participating in TPS were invited to complete the Parent Activation Measure for Developmental Disabilites (PAM-DD) one week prior to their initial visit. The PAM-DD is anew 13-item questionnaire tested for this study assessing parent knowledge, skill, and confidence for self-management of their child. It was based on Hibbard et al., (2005) Patient Activation Measure. Parents also completed the Parenting Stress Index- Short Form (Abidin 1990) and an in-house self-management assessment (SMA) of how certain they are that they can manage their child’s sleep, behavior, eating, toiling, and school issues using an 11-point Likert Scale (“0” not managing at all to “10” managing well). All measures were given 1-week before their TPS.
The internal consistency of the PAM-DD as measured using intraclass correlation was good (alpha = .80). As expected, the PAM-DD correlated negatively with parent stress (r = -.52, p = .002) and positively with self-management of child’s problems (r = .52, p = .006).
Overall, initial findings suggest that the PAM-DD is a valid and reliable tool that is sensitive to variation in parent stress and self-management and could serve as an important tool to assess the quality of parent-provider healthcare interactions.