Howells, Simone R., Cornwell, Petrea L., Ward, Elizabeth C., and Kuipers, Pim (2021) Living with Dysphagia in the Community: Caregivers “do whatever it takes.”. Dysphagia, 36 (1). pp. 108-119.

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Abstract

The psychological and psychosocial impacts of dysphagia on patients are well documented, however, caregiver perspectives have received limited attention and findings have been predominantly in the head and neck cancer population. The aim of this study was to understand the experience of supporting a person with dysphagia of varying aetiologies in the community from the caregiver perspective. Using a qualitative descriptive approach grounded in phenomenology, caregivers of a person with dysphagia living at home were interviewed (n = 15). Thematic analysis revealed an overarching theme of “You do whatever it takes,” describing the caregiver experience of supporting a family member/friend with dysphagia at home. This theme was underpinned by three subthemes where caregivers described (1) being a caregiver; (2) support networks; and (3) practicalities of living with dysphagia. Caregivers voiced a range of pertinent issues experienced when caring for a family member/friend with dysphagia including how personal attributes and life experience impact the caregiver role. Demonstrated through the practical and emotional supports caregivers provided, it was apparent they are instrumental in supporting a family member/friend with dysphagia to live at home and in the community successfully. Through understanding the caregiver experience, health professionals will be in a better position to involve and support caregivers who play a vital role in those living with dysphagia in the community. Incorporating caregivers as direct recipients of dysphagia services will ensure the practical and psychosocial needs of caregivers are addressed, enabling optimal care for people with dysphagia living at home.

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