**6. Role of family-centered care in dysphagia management**

Given the emerging evidence supporting the important role of family members in the provision of informal care for people with dysphagia, and the potential for third-party disability in family members of people with dysphagia, active involvement of family members in all aspects of dysphagia assessment and intervention is clearly indicated. This could be achieved in dysphagia management by shifting from a patient-focused, impair‐ ment-based model of intervention, to providing a more holistic, family-centered ap‐ proach. The Institute for Patient- and Family-Centered Care [39] define family-centered care (FCC) as "... an approach to the planning, delivery, and evaluation of healthcare that is governed by mutually beneficial partnerships between healthcare providers, patients and families." Although traditionally used in pediatrics, FCC can be applied to people of all ages, and used in any health care setting [39, 40].

The term "family-centered care" is sometimes used synonymously with patient-centered care and client-centered care. However, an important distinction between FCC and the other forms of centeredness is that FCC seeks to explicitly assist families in ways that are important to family members [41, 42]. As such, FCC ensures that care is planned around the whole family; and importantly, the entire family is recognized as receivers of care, not just the individual with dysphagia [43, 44]. In the context of third-party disability, FCC is the most relevant type of centeredness in health care because it emphasizes the importance of health care that is mutually beneficial to all [45].

applying knowledge, self-care, major life areas, and community, social and civic life [38]. The number of relevant activity and participation domains highlights the pervasive effects of dysphagia on the life of the carer and demonstrates that food and meals underpin a number of life areas for family members of head and neck cancer survivors with dysphagia. This study confirmed that ICF terminology can be used successfully to describe the multifaceted and complex effects of dysphagia on family members of people treated nonsurigcally for head and

In reponse to the pervasive effects of dysphagia, studies reported to date have identified a number of strategies and processes family members adopt to adjust and cope with their family member's dysphagia and the associated impacts on their life [24-26]. A predomi‐ nant theme across studies is the acceptance of a new normal. That is accepting that meal preparation, mealtimes, and social occassions may never be the same. In order to reach this point, family members across studies noted the need to negotiate changing roles in regards to their family members dysphagia and the need to take on more roles within the house‐

Other strategies reported by family members include maintaining a positive attitude; looking for opportunities to eat foods that their partner could not eat when they were not present; and using trial and error strategies to learn what foods their family member could and could not eat. Each of these strategies and adjustment processes were often made without the support of health professionals and family members across studies have consistently reported the need for further education, training, and support from health professionals to help them adapt and adjust to their family member's dysphagia regard‐

Given the emerging evidence supporting the important role of family members in the provision of informal care for people with dysphagia, and the potential for third-party disability in family members of people with dysphagia, active involvement of family members in all aspects of dysphagia assessment and intervention is clearly indicated. This could be achieved in dysphagia management by shifting from a patient-focused, impair‐ ment-based model of intervention, to providing a more holistic, family-centered ap‐ proach. The Institute for Patient- and Family-Centered Care [39] define family-centered care (FCC) as "... an approach to the planning, delivery, and evaluation of healthcare that is governed by mutually beneficial partnerships between healthcare providers, patients and families." Although traditionally used in pediatrics, FCC can be applied to people of all

**5. Strategies used by family members to cope with dysphagia**

less of etiology or severity of dysphagia [25, 26, 29].

ages, and used in any health care setting [39, 40].

**6. Role of family-centered care in dysphagia management**

neck cancer.

166 Seminars in Dysphagia

hold [24-26].

The principles of FCC originated in the field of psychology, and specifically, family-systems theory. According to family-systems theory, the behavior of any individual should be viewed in the context of their family's social system [46]. This consideration is supported by empirical evidence showing that family relationships affect biological systems, psychological well-being, and health behavior [47]. Therefore, consideration of the contribution of family relationships to health outcomes is an important consideration for any health service. Family-systems theory also supports the notion that family members play an important role in promoting ongoing change and development in an individual's functioning, and these changes have the potential to affect the entire family unit.

Given FCC has its roots in theories from psychology, there is a body of evidence in the field of psychology supporting the efficacy of involving family members in interventions. The range of psychological disorders for which involvement of family members has been investigated has been diverse, but includes such conditions as obsessive compulsive disorder and problemgambling [48-57]. This body of research has shown that interventions that include family members are more effective than individual treatment [52, 54]. Research has also demonstrated that the inclusion of family members in intervention increases opportunities for the family to improve their communication [53, 57]. Involvement of family members also allows professio‐ nals to obtain a more holistic view of the true impact of the problem as well as the role of family dynamics [56].

Research in pediatric health care has long demonstrated the benefits of FCC for children with a variety of health conditions. A recent systematic review highlighted the benefits for both patients and family members in terms of improvements in the health condition, improved efficiencies and access to health care services, and improved communication between health care professionals and families [58]. In terms of family functioning, a meta-analysis by Dunst et al. [59] also showed improved family behavior and functioning as a result of FCC. More recently, the application of FCC to adult health care services has been discussed in the literature [40], with a number of documented benefits. Studies have shown that active engagement of family members in medical consultations for patients with chronic conditions results in greater patient engagement in decision making [60], improved recall of information [61], improved satisfaction with care and health-related quality of life [62, 63], increased compliance with medical treatments [64], decreased depression rates, and overall better family dynamics for patients and family members [65, 66]. These benefits have been shown to be especially strong for families of patients with physical health conditions due to the physical assistance provided by these family members on a daily basis [67-69]. In the case of dysphagia, it is expected that 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 would yield similar benefits.

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

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 of their family member.

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 and holistic in nature, to ensure that the full consequences of dysphagia on the everyday lives of people with dysphagia and their family members are discussed. Previous research has documented the desire of both people with dysphagia and their families to receive more information regarding the potential everyday impacts of dysphagia and how these impacts can be managed [14, 26]. In addition to providing information about the everyday impacts of dysphagia, in order to provide effective FCC, health professionals should also provide information about the role of family members in the management process [74], including issues relating to meal preparation, shopping for textured modified foods, household organization, nutrition, and encouraging their family member with dysphagia to keep eating [26], and importantly, discussion of strategies and resources that may aid them in this role.

Another consideration for clinicians is how this information provided to people with dyspha‐ gia and their family members could most effectively inform shared decision making. Shared decision-making is one of the key principles of FCC and involves active participation of both the patient and family in the decision-making process. Kaizer et al. [73] described a shared decision-making model that was used with people with dysphagia and their family members in a rehabilitation hospital setting. Kaizer et al. [73] acknowledged that the use of a familycentered shared decision-making model was important in the management of dysphagia as the success of dysphagia recommendations required considerable cooperation and participa‐ tion of both people with dysphagia and their family members. Engagement of people with dysphagia and their family in the decision-making process is especially important to ensure that they understand and agree with the recommendations being made. In situations when patients and families feel "forced" to follow a management plan they do not agree with, divisions may develop between family members, hampering positive relations between the patient and family and the health care team [73].

It is clear that in order to promote the best possible outcomes for people with dysphagia, and minimize the third-party disability experienced by family members of people with dysphagia, the provision of more holistic, family-centered approach to dysphagia management is recommended. This chapter has provided some key evidence supporting the use of FCC in other areas of health care, which could readily be applied to services for people with the dysphagia and their families. Some important considerations for the successful implementa‐ tion of FCC have also been discussed, with concepts from other fields of health care applied to dysphagia rehabilitation.
