Family needs and the role of information in paediatric rehabilitation care

Abstract

Improving functioning of children with disabilities is the main focus of paediatric rehabilitation services. This functioning is determined by a complex interaction between the health condition and contextual factors as described in the ICF-model. The most important contextual factor for young children is the family. The functioning of the child is widely influenced by the functioning of the family, and vice versa. Therefore, family-centered services are increasingly being promoted. In order to be able to shift focus from child-centered towards family centred services, it is important that parents are empowered to be involved in the healthcare process. In order to be involved and participate in healthcare and decision-making, parents need information, skills and opportunities. There is much variation in parental preferences and experiences considering the care for their children. Moreover, parents and families show large differences in their family needs, and these needs change in time. Concrete assessment of family needs and the way these needs are addressed is needed, especially in times of transition, where there are changes in care needs and preferences. Besides medical information, experience-based knowledge is deemed very important by parents. Parents search for information on the Internet, and compare information from different sources. This knowledge is used by the parents to take control of their situation. Both medical and experience-based knowledge help enable parents to play a role in decision-making and thus in the process oftheir empowerment. In an extensive literature review and by interviewing parents and professionals, we mapped possible family needs of families of children with disabilities. This resulted in a list of 189 unique family needs. Many needs were information-needs on a wide range of topics. In order to help parents explore their needs, find information and consult the appropriate professional, in close collaboration with parents we designed a digital tool called the WWW-roadmap. We proposed that using this tool for preparing the consultation with the rehabilitation physician could help parents in the process of empowerment. In a sequential-cohort study we explored differences between 74 parents who used the tool prior to the consultation with the physician and 54 parents who did not. We found no differences in parental empowerment, patient and physician satisfaction, self-efficacy and perceived family-centredness of care. However, qualitative analyses showed that using the tool helped parents in finding information, the feeling of being better able to formulate questions, awareness of the possible roles in the consultation and maintaining a comprehensive picture of their situation and family needs. The WWW-roadmap can be useful for parents to identify their needs and to search for information. This can provide parents with an opportunity to meet their information needs themselves. They then may be more easily inclined to discuss these questions and needs with the professionals. However, as ‘it takes two to tango’, it is not only the parents who should be supported, but professionals should also be trained and supported to become sufficiently aware of parental and family needs and specifically ask about them, bringing family-centred care one step closer to realisation.