Integrating Family-Centered Care Into Chronic Dysphagia Management: A Tutorial

Purpose: Chronic illnesses and sources of disability, such as dysphagia, are experienced by the entire family system. A narrow focus on impairment-level treatment cannot account for the often-dramatic shift in biopsychosocial functioning that is experienced by both the individual with dysphagia and their family members. To maximize treatment effectiveness, it is therefore necessary to focus more holistically on family resilience and adaptation. Drawing from the principles of family systems theory and the biopsychosocial–spiritual framework, this tutorial explores the application of family-centered care models to chronic dysphagia management. Using a case study to illustrate dysphagia's impact on family caregivers, we suggest a number of opportunities for speech-language pathologists to appropriately engage in family-centered care. Conclusions: Clinicians need to recognize that chronic dysphagia's widespread consequences necessitate the integration of the family into intervention plans. This requires a better understanding of family dynamics, particularly as they relate to the medical condition. As part of the management process, clinicians should consider explicitly inquiring about specific sources of support the family may require and make referrals to other professionals as needed. They should also consider implementing strategies to support the family into intervention in a way that minimizes burden and respects their capabilities. It is only through a more family-centered care approach that clinicians will be able to reduce the impacts of third-party disability and improve the lives of patients and their families.