**3. The effects of dysphagia on the family**

Mealtimes, eating, and drinking are profoundly social activities that sustain not only our physiological needs but also our social and emotional life [22]. The meanings we attach to food, and the processes of eating and swallowing are deeply connected to our most valued activities and experiences, and are integral to how we see ourselves as individuals and in relation to others [23]. As such the negative effects of dysphagia are recognized to influence more than just the life of the person with the condition.

In a recent study that mapped the experiences of living with dysphagia following nonsurgical head and neck cancer management to the ICF, a number of environmental factors were identified to influence the functioning (and disability) of the individuals with dysphagia [20]. In particular, family members were identified as important sources of support for people with dysphagia throughout the trajectory of care, particularly in regards to meal preparation and the encouragement to keep eating [20]. In addition to playing an important support role, there is emerging evidence to indicate that families also experience negative effects as a result of living with and supporting individuals with dysphagia [24-26]. For the purposes of this chapter, family is defined as any individual who plays a significant role in the life of the person with dysphagia. This definition encompasses a broad concept of family, and is consistent with other literature, whereby family is described as being two or more people who are related in any way, including through a continuing biological, legal, or emotional relationship [27].

Recent research has demonstrated the pervasive effects of dysphagia on family members following a number of different etiologies including head and neck cancer treatment [24, 26, 28, 29], stroke [25], traumatic brain injury [25], and motor neuron disease [30]. This body of evidence has revealed that families are important members of the support team for people with dysphagia as they provide valuable practical and emotional support. The high levels of burden experienced by family members in relation to food and meal preparation may hinder their ability to function effectively as a support system for the individual with dysphagia [24, 26, 31]. It can also affect their physical and psychological health, and quality of life [24, 25, 32].

Verdonck de Leeuw et al. [32] found that the presence of a gastrostomy tube, a surrogate indicator of dysphagia, in people with head and neck cancer was the only significant predictor of distress in family carers. Supporting this, the family members of people with head and neck cancer and dysphagia have been shown to experience a reduced quality of life both before cancer treatment and in the early acute phase, with significant improvements shown between 3 and 12 months post-treatment [24]. Evidence supports that the family member's quality of life was found to significantly correlate with the functioning of their family member with dysphagia [24]. Therefore, the presence of dysphagia has the potential to have significant effects, not only on the life of the person with dysphagia but also on their family. Despite differing etiologies, family members of people with dysphagia consistently report negative effects on their everyday lives as a result of the dysphagia particularly in relation to: managing modified diets/fluids, and providing appropriate meals; negative influences of dysphagia on family dynamics and social activities; and the emotional impacts of dysphagia [24-26, 28-30].

### **3.1. Managing modified diets and fluids and providing appropriate meals**

clearly has far-reaching life effects beyond the physiological changes to the swallow and the

Mealtimes, eating, and drinking are profoundly social activities that sustain not only our physiological needs but also our social and emotional life [22]. The meanings we attach to food, and the processes of eating and swallowing are deeply connected to our most valued activities and experiences, and are integral to how we see ourselves as individuals and in relation to others [23]. As such the negative effects of dysphagia are recognized to influence more than

In a recent study that mapped the experiences of living with dysphagia following nonsurgical head and neck cancer management to the ICF, a number of environmental factors were identified to influence the functioning (and disability) of the individuals with dysphagia [20]. In particular, family members were identified as important sources of support for people with dysphagia throughout the trajectory of care, particularly in regards to meal preparation and the encouragement to keep eating [20]. In addition to playing an important support role, there is emerging evidence to indicate that families also experience negative effects as a result of living with and supporting individuals with dysphagia [24-26]. For the purposes of this chapter, family is defined as any individual who plays a significant role in the life of the person with dysphagia. This definition encompasses a broad concept of family, and is consistent with other literature, whereby family is described as being two or more people who are related in any way, including through a continuing biological, legal, or emotional relationship [27].

Recent research has demonstrated the pervasive effects of dysphagia on family members following a number of different etiologies including head and neck cancer treatment [24, 26, 28, 29], stroke [25], traumatic brain injury [25], and motor neuron disease [30]. This body of evidence has revealed that families are important members of the support team for people with dysphagia as they provide valuable practical and emotional support. The high levels of burden experienced by family members in relation to food and meal preparation may hinder their ability to function effectively as a support system for the individual with dysphagia [24, 26, 31]. It can also affect their physical and psychological health, and quality

Verdonck de Leeuw et al. [32] found that the presence of a gastrostomy tube, a surrogate indicator of dysphagia, in people with head and neck cancer was the only significant predictor of distress in family carers. Supporting this, the family members of people with head and neck cancer and dysphagia have been shown to experience a reduced quality of life both before cancer treatment and in the early acute phase, with significant improvements shown between 3 and 12 months post-treatment [24]. Evidence supports that the family member's quality of life was found to significantly correlate with the functioning of their family member with dysphagia [24]. Therefore, the presence of dysphagia has the potential to have significant effects, not only on the life of the person with dysphagia but also on their family. Despite

medical implications of dysphagia.

162 Seminars in Dysphagia

**3. The effects of dysphagia on the family**

just the life of the person with the condition.

of life [24, 25, 32].

A number of studies have noted that family members of people with dysphagia report experiencing distress associated with food preparation and mealtime activities [24-26, 31]. Consistently across multiple studies, family members reported changes to their meal prepa‐ ration, noting a need for more conscious and intentional thought and planning, and the need to cook two separate meals [24-26]. Preparing food and meals is one of the most significant ways of providing care, and demonstrating love and concern for others [22, 24, 33]. Though often discounted as trivial, there are a number of important skills involved in the work of "feeding the family" [22]. These skills include: planning meals, learning the food preferences of others, learning about food and preparation techniques, provisioning and shopping for food, preparing meals, serving meals, feeding, and cleaning up from meals.

Meals have been described as fundamental to our daily thinking and acting and are core component to how we organize our days [34]. It is has been estimated that the average person makes over 260 decisions a day regarding eating and that more than 200 of these choices are made subconsciously [35]. When it comes to preparing meals for an individual with dysphagia, decisions regarding eating and drinking are likely to increase and will likely no longer be subconscious. Putting a meal together requires more than cooking as it takes "thoughtful foresight, simultaneous attention to several different aspects of a project, and a continuing openness to ongoing events and interactions" (p. 55) [22]. When a family member has dys‐ phagia, putting a meal together becomes a more intense and time-consuming process [26].

#### **3.2. Influence of dysphagia on family dynamics and social activities**

Dysphagia has a recognized influence on family dynamics [24-26, 30, 31]. Many families report the need to accommodate the needs of their family member with dysphagia and consistently find a disruption to family mealtimes [26]. For a number of families, their meals are now dictated by what their family member with dysphagia can eat and some families also eat textured modified diets [26]. In addition, several families have commented that they no longer ate meals together as they did not want to eat in front of their family member with dysphagia [26, 30]. Those that did reported changes to the meaning and experiences of family meals [24-26]. In some studies family members reported leaving the dinner table because they could not cope with their family member's dysphagia [25, 26]. Family mealtimes are often acknowl‐ edged as an important get-together time to enrich family life and "eating together means staying together" (p. 11) [34]. When one member of the family can no longer fully engage in the mealtime experience because of dysphagia, the effects are felt by the entire family unit as there is a loss in the social bonds of food and meals [24-26, 30, 31].

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 adjust to the dysphagia [26].

#### **3.3. Emotional impacts of dysphagia**

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 for their family member with dysphagia [26].
