Living with Dysphagia in the Community: Caregivers “do whatever it takes.”

Abstract

Living with dysphagia in the community: caregivers "do whatever it takes".

The care needs of persons with oropharyngeal dysphagia and their informal caregivers: A scoping review

“…Meal management included preparing food with adequate rheological and nutritional characteristics, assisting the patient in case of swallowing problems, investing additional time and thought on meals preparation and consumption, splitting lunch and dinner into small but frequent meals, and giving practical assistance to patients during meals (e.g. feeding the patient or reminding him/her of behavioral strategies for meal consumption) [ 18 , 52 – 54 , 56 , 62 , 65 ]. Food availability referred to the restricted choice of safe and tasty food in healthcare facilities, at home, or during social occasions [ 18 , 53 , 54 , 61 , 63 ].…”

“…As concerns informational needs, three subcategories could be identified: the need for getting additional, clearer, and tailored information. Patients and caregivers wished to acquire better knowledge about symptom development, PEG advantages, health professionals’ roles in OD management, and food recipes for OD [ 18 , 51 – 53 , 55 – 57 , 59 , 61 , 63 ]; they reported feeling overwhelmed by a large amount of information that was however unclear or difficult to understand [ 18 , 51 , 53 , 56 , 59 ]; they expected information to be more specifically tailored to their own experience [ 51 , 55 , 56 , 59 , 63 ].…”

“…Within Social needs, the most frequent subcategory was receiving support from caregivers or other family members, health professionals and other patients [ 18 , 51 , 55 , 56 , 61 , 63 ], followed by obtaining acceptance from family, friends, and community members [ 18 , 52 , 54 , 55 , 62 , 63 , 65 ], coping with changes in one’s family and social roles [ 55 , 56 , 65 ], and experiencing concerns for the other member of the dyad [ 53 – 56 , 65 ].…”

“…Among the psychological needs, the predominant one was to cope with the emotions evoked by eating difficulties, such as fear and anger, and with a feeling of loss [ 18 , 51 , 54 – 57 , 61 , 63 , 65 ]. Furthermore, patients and caregivers reported problem-focused [ 18 , 51 , 56 , 57 , 59 ] and meaning-focused coping strategies, such as acceptance of the swallowing problem as a part of one’s own identity, acceptance of a "new normal" condition, and recognition of changes in one’s own social roles [ 18 , 54 , 56 , 63 ]. In addition, patients and caregivers expressed the need to better connect the information received about symptom development with their own daily experience of OD [ 18 , 56 , 63 ].…”

“…Furthermore, patients and caregivers reported problem-focused [ 18 , 51 , 56 , 57 , 59 ] and meaning-focused coping strategies, such as acceptance of the swallowing problem as a part of one’s own identity, acceptance of a "new normal" condition, and recognition of changes in one’s own social roles [ 18 , 54 , 56 , 63 ]. In addition, patients and caregivers expressed the need to better connect the information received about symptom development with their own daily experience of OD [ 18 , 56 , 63 ]. Some patients reported the need to be motivated at eating, due to loss of eating desire [ 55 , 62 , 65 ], while others hoped to be able to enjoy food again [ 52 , 55 , 63 ].…”