**4. Third-party disability in dysphagia**

The impact of dysphagia on an individual's family is increasingly being acknowledged as an important consequence of dysphagia [24-26]. The effects of a health condition, such as dysphagia, on the functioning (and disability) of family has been termed "third-party disabil‐ ity" and identified as an area for future work by the WHO [15]. The concept of third-party disability is raised in the situation where the family member may not have a health condition; however, they may experience activity limitations and participation restrictions as a result of their family member's dysphagia.

Although the concept of third-party disability is still under some conceptual debate, to date the ICF has been used successfully to describe the third-party disability of spouses of older people with hearing impairment [36]; close family members of people with aphasia [37]; and more recently, family members of people with dysphagia following head and neck cancer [38]. A model extending the ICF to explain third-party disability has been proposed [36] and an adapted version of this model, specifically relating to dysphagia, is shown in Figure 2. This adapted model demonstrates how the functioning and disability of an individual with dysphagia acts as an environmental factor for the family member, influencing their functioning (and disability).

The effects of dysphagia, on family members at mealtimes, are not limited to the home. Numerous studies have documented the negative effects of dysphagia on family member's social lives including eating out at restaurants and attending significant events such as weddings and holidays leading to further feelings of frustration and isolation [24-26]. Some family members reported looking for opportunities to eat foods that their family member could no longer eat when their family member with dysphagia was not present [26]. Despite the disruptions to family meals and social engagements, the family members in one study reported that they believed the dysphagia did not have a significant impact on their relationship, but had in fact brought them closer together, indicating that family members learn to adapt and

Numerous emotional impacts of dysphagia on family members have been discussed in the current literature. These emotional impacts have been expressed around a variety of areas. Johansson and Johansson [25] noted that family members of people with dysphagia following stroke or traumatic brain injury expressed concern about their family member's health and well-being, particularly regarding nutrition, weight maintenance, and the need to pay special attention to texture-modified diets. These findings are similar to those found in family members of people with dysphagia following head and neck cancer. Both Patterson et al. [24] and Nund et al. [26] discussed feelings of fear, guilt, frustration, anger, stress, and helplessness over the enforced changes to meal preparation [24,26]. In addition, family members expressed feelings of insecurity, uncertainty, loneliness, and frustration [24-26] when leaving the care of the hospital services. Family members in these studies reported feeling ill-prepared and anxious regarding the increased responsibilities for their family member's food and eating [25-27]. These findings across studies highlight the need for specific interventions for family members to build capacity and provide support in the multiple roles they undertake in caring

The impact of dysphagia on an individual's family is increasingly being acknowledged as an important consequence of dysphagia [24-26]. The effects of a health condition, such as dysphagia, on the functioning (and disability) of family has been termed "third-party disabil‐ ity" and identified as an area for future work by the WHO [15]. The concept of third-party disability is raised in the situation where the family member may not have a health condition; however, they may experience activity limitations and participation restrictions as a result of

Although the concept of third-party disability is still under some conceptual debate, to date the ICF has been used successfully to describe the third-party disability of spouses of older people with hearing impairment [36]; close family members of people with aphasia [37]; and more recently, family members of people with dysphagia following head and neck cancer [38].

adjust to the dysphagia [26].

164 Seminars in Dysphagia

**3.3. Emotional impacts of dysphagia**

for their family member with dysphagia [26].

**4. Third-party disability in dysphagia**

their family member's dysphagia.

**Figure 2:** Application of the ICF to family members of people with dysphagia (adapted from Scarinci et al. [36]) **Figure 2.** Application of the ICF to family members of people with dysphagia (adapted from Scarinci et al. [36])

In a recent study that mapped family members ' experience of dysphagia following head and neck cancer to the ICF, Nund et al. [38] found that the majority of their concerns were linked to the activities and participation component of the ICF (e.g., difficulties or changes to meal preparation were linked to the activities and participation component). It should be noted, however, that these difficulties were generally determined to be performance problems rather than capacity limitations [38]. The difficulties experienced by family members regarding meal preparation were not related to impairments in their body functions, or even in their capacity to prepare a meal. Rather, family members reported experiencing difficulties preparing meals because their family member with dysphagia had specific requirements regarding food and fluids [38]. In a recent study that mapped family members ' experience of dysphagia following head and neck cancer to the ICF, Nund et al. [38] found that the majority of their concerns were linked to the activities and participation component of the ICF (e.g., difficulties or changes to meal preparation were linked to the activities and participation component). It should be noted, however, that these difficulties were generally determined to be performance problems rather than capacity limitations [38]. The difficulties experienced by family members regarding meal preparation were not related to impairments in their body functions, or even in their capacity to prepare a meal. Rather, family members reported experiencing difficulties preparing meals because their family member with dysphagia had specific requirements regarding food and fluids [38].

This finding is consistent with the definition of third-party disability whereby although the family member does not have a health condition, they experience activity limitations and participation restrictions as a result of their partner's health condition (i.e., as a result of their partner's dysphagia) [14]. In this mapping process, it was observed that the most relevant domains of the activities and participation component of the ICF were those of interpersonal interactions and relationships, domestic life, general tasks and demands, learning and 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 neck cancer.
