And how is it achieved for children with disabilities and their families?
Parent empowerment is described as “a process by which individuals gain mastery and control over their lives and a better understanding of their environment” [Zimmerman Marc et al 1992] and has become a hot topic in many areas including the field of childhood disability. It has gained traction across our professions, but do we really know what it is? And more importantly how to do it? From medical consultations to therapy intervention programmes, we are all striving to deliver family-centred services and shift control from a professionally directed model to a partnership model.
I have searched the back catalogue of the EACD meeting in Georgia and EACD meeting in Paris to gather information on this topic and share some insights. Here are my tips to facilitate the parent empowerment process for the children and families with disabilities and support them to get more control over their situation.
Communication should be open and collaborative. Parents are the expert in their own child and should be treated respectfully and in partnership during any communication exchange. The recent pandemic has demonstrated that being flexible about the mode and timing of communication has been positive for some families who prefer the use of videocalling. They may find it to be more convenient and take less time out of their day. However, this may not suit other families and individual preferences should be considered. It should be a shared decision and the start of partnership. We learned from Smeets example [Smeets N, 2019 "Rehabilitation in congenital myasthenic syndrome: learning from parents"] that goals set by the rehabilitation team alone were not adequate. An interview with the parents prompted a review of the goals and changed the focus of intervention. Shared goals setting empowered the child and family to achieve participation targets outside of the medical setting.
Information needs of children with disabilities and their families are well documented in the literature. Being informed is an important prerequisite for parental empowerment, as we heard from Alsem during the EACD Georgia meeting. In the presentation and the subsequent full text article [Alsem M, 2019 "Parental empowerment in paediatric rehabilitation: Exploring the role of a digital tool to help parents prepare for consultation with a physician"] we are encouraged to provide information to parents ahead of consultation appointments. In this case a digital resource was used called WWW-roadmap. These authors encourage professionals to support families to acquire knowledge in the best way for them as individuals. Consider the amount of information shared in your practice so that you can have a more trusting and open relationship in consultation situations, leading to greater shared decision-making.
Education for parents and professionals is an essential part of developing knowledge and skills. Look for opportunities for parents and professionals to collaborate in shared learning eg implementing a new therapy intervention. Professionals need to be proactive in learning about their families needs. As demonstrated by Warnink-Kavelaars example [Warnink-Kavelaar J, 2019 "Marfan syndrome in childhood: parents' perspectives of the impact on the daily functioning of children, parents and family; a qualitative study"] it is possible to gain more understanding of the child and family needs through interviews and focus groups. Professionals working with children with disabilities will be better positioned to address the support needs of families if they actively seek their views, taking into account their individual and cultural needs. We should use this shared knowledge to tailor rehabilitation and education interventions to empower families and children and enhance daily functioning.
Education through experience can be an appropriate method for some families to gain knowledge. At the EACD Paris meeting we had the opportunity to hear from Jerkovic [Kos Jerkovic V. 2019 "Group as a Safe Place for Development of Mother-Child Relationship"] about some education and experiential workshops for parents of young children with disabilities. Is it possible for you to consider a group intervention to empower families in a safe space to learn to support their child’s development, while learning to support themselves?
Support from family and others is crucial for parent empowerment. Lord shared more about empowerment, motivation and relationships during an oral presentation at EACD Georgia meeting and the team have since published the full article [Lord C, 2108, "Determinants of parent‐delivered therapy interventions in children with cerebral palsy: A qualitative synthesis and checklist"] The authors remind us to ask about support and coping because a close support network isn’t always available to families. More support from health care professionals and charities may be required, and attention to cultural and environmental needs are essential.
Finally, don’t forget that for some families, empowerment is not a fully resolved issue. From time to time families may need more support from health care professionals, particularly when it comes to adjusting to and coping with their child’s changing disability
Parent empowerment is an important component of child and family centred care. Start with building good communication, provide support and information, build knowledge and be open to working in partnership. Pay particular attention to the individual and cultural needs of children with disabilities and their families.