**7. Conclusion**

due to the chronic nature of this condition and the ongoing supports required by family members in mealtime preparation and assistance, the application of FCC for this population

The Institute for Patient- and Family-Centered Care [39] describes four key components for applying FCC, which could be implemented in dysphagia management: (1) respect and dignity for patients and family members, such that health care professionals listen to and honor the perspectives and choices of patients and family members; (2) the provision of complete and unbiased information to patients and family members such that they can participate effectively in the decision-making process; (3) participation of patients and family members in all aspects of care and decision making; and (4) collaboration with patients and family members in all levels of health care, including policy and program development, implementation and

In listening and honoring the perspective and choices of people with dysphagia and their family members, clinicians should follow the recommendations outlined by Laidsaar-Powell et al. [70] in order to optimize family member involvement. These include: encouraging, welcoming and involving family members in all aspects of the consultation; and determining the reason for the presence of family members from the perspective of both the patient and family member. Although family members of people with dysphagia may attend consultations with the patient, their role may traditionally be viewed by the health professional as that of "support person" for the individual with dysphagia. However, a recent systematic review of family member involvement in physician consultations highlighted that family members may play a number of roles in supporting patients, ranging from being a memory aide and transcriber to providing emotional support and serving as an advocate and interpreter [70]. A narrow perception of these roles by health professionals may serve to prevent full and active participation in the management plan, with a recent study indicating that health professionals may miss valuable opportunities for engaging family members in designing chronic care management plans, and failing to facilitate participation of family members in consultations [71]. Thus, in order to facilitate FCC in dysphagia management, clinicians should not only be mindful of highlighting helpful behaviors from family members; but also clarifying and agreeing on the role of the family member in the initial stages of the consultation. Laidsaar-Powell et al. [70], however, highlight the importance of respecting patient preferences for family member involvement, ensuring that patients consent to and support the involvement

In dysphagia management, the provision of health information that is complete and unbiased is especially important given the health-related quality of life implications of dysphagia [2, 5]. Both people with dysphagia and their family members report the need for more personalized and practical information regarding dysphagia management [13, 26, 28-31]. Johnson [72] further emphasizes the importance of providing complete and unbiased information on a continuous basis. This, of course, is especially important for people with dysphagia who may not understand or have difficulty following recommendations due to associated cognitive impairments [73], and require their family member to take full responsibility for the decisionmaking process. In dysphagia management, health information must be both family-centered

evaluation, facility design, professional education, and in the delivery of care.

would yield similar benefits.

168 Seminars in Dysphagia

of their family member.

Current research has documented both the medical, psychosocial, and health-related quality of life impacts of dysphagia. In addition, emerging research is also demonstrating the perva‐ sive nature of dysphagia on family members. Though the physiological impacts of dysphagia are generally well recognized and managed, people with dysphagia and their families may also experience significant negative effects on their daily lives including impacts on meal preparation, family dynamics and family mealtimes, social occasions, and psychological effects. Though clinicians generally recognize the importance of family members, many focus their attention on the individual with dysphagia and therefore the effect of dysphagia on family members is rarely assessed or managed. Providing a more holistic and family-centered approach to dysphagia assessment and management, using a framework such as the ICF, may not only assist the family, but may also result in more positive long-term outcomes for people with dysphagia. In the next decade, further research is required to document the effects of dysphagia on the family and to develop new and innovative treatments for family-centered care in dysphagia management.
