Mat och måltider vid livets slut : patienter och närståendes erfarenheter av ätsvårigheter

Food and meals are embedded in people’s everyday social life. For people with progressive life-limiting conditions eating is often obstructed. When a dying person is cared for at home, family members often take responsibility for the provision of food and mealtimes. Previous research has shown that the situation around mealtimes can be stressful for patients and their partners.

The overall aim of this thesis was to to explore meanings of eating deficiencies at the end of life, from a patient and partner perspective

Methods: Interpretive descriptive design was chosen as the study sought to explore experiences related to eating deficiencies. Data was based on repeated individual interviews with dying persons (study I) and retrospective individual interviews with partners 3-6 months after the death of ill persons (study II). Data collection and analysis were guided by the interpretive description method.

Findings: The results from the two studies showed that eating deficiencies among people with progressive life-limiting conditions and their partners are existentially loaded markers of impending death (I, II). The results also show that eating deficiencies can influence relationships and social interaction in ways that may hamper the possibility of sharing moments together with friends and family members that are valuable during the last period of life (I).

Conclusion: Efforts to minimize the distress people with eating deficiencies and progressive life-limiting conditions and their partners may experience are important for well-being. Person-centered approaches to acknowledge and support individuals’ own ways of experiencing and dealing with eating deficiencies are recommended that include a holistic perspective on food and eating.

List of scientific papers

I. Wallin V, Carlander I, Sandman P-O, Håkanson C. Meanings of eating deficiencies to people admitted to palliative home care. Palliative and Supportive Care. 2014 Oct 22:1-9.
https://doi.org/10.1017/S1478951514001199

II. Wallin V, Carlander I, Sandman P-O, Ternestedt B-M, Håkanson C. Maintaining ordinariness around food: partners’ experiences of everyday life with a dying person. Journal of Clinical Nursing. 2013 23(19-20), 2748-2756.
https://doi.org/10.1111/jocn.12518