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Mat och måltider vid livets slut: Patienter och närståendes erfarenheter av ätsvårigheter
Karolinska institutet.
2015 (Swedish)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

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.

Place, publisher, year, edition, pages
Stockholm: Karolinska institutet , 2015. , 38 p.
National Category
Nursing
Identifiers
URN: urn:nbn:se:esh:diva-5779Libris ID: 17553415ISBN: 9789175497587 (print)OAI: oai:DiVA.org:esh-5779DiVA: diva2:1074360
Public defence
2015-02-06, Aulan, Stigbergsgatan 30, Stockholm, 13:00
Supervisors
Available from: 2017-02-15 Created: 2017-02-15 Last updated: 2017-02-15Bibliographically approved
List of papers
1. Meanings of eating deficiencies for people admitted to palliative home care
Open this publication in new window or tab >>Meanings of eating deficiencies for people admitted to palliative home care
2015 (English)In: Palliative & Supportive Care, ISSN 1478-9515, E-ISSN 1478-9523, Vol. 13, no 05, 1231-1239 p.Article in journal (Refereed) Published
Abstract [en]

Food and eating are embedded in people's everyday social lives: at home with family members and as part of social interactions. For people with progressive life-limiting conditions, however, eating is often obstructed. The objective of the present study was to explore the meanings of living with eating deficiencies at the end of life among people admitted to specialist palliative home care.

This qualitative inductive study employed an interpretive descriptive approach. A dozen persons, with various diagnoses and eating deficiencies, admitted to two specialist palliative home care units, participated. Data were collected through individual repeated interviews. Data collection and analysis were guided by the interpretive description method.

The results reveal that eating deficiencies among people with progressive life-limiting conditions are existentially loaded markers of impending death. Finding ways to overcome declined food intake and hampered eating enabled our participants to feel able to influence their own well-being and remain hopeful. The results also showed that the eating deficiencies influenced participants' relationships and social interactions in ways that hampered their possibilities of sharing valuable moments together with friends and family members during the final period of life.

Efforts to minimize the distress that people experience in relation to the challenges they face with eating deficiencies are important for well-being at the end of life. Person-centered approaches to acknowledge and support individuals' own ways of experiencing and dealing with their eating deficiencies are recommended that include a multidimensional perspective on food and eating.

Keyword
Eating deficiencies, Existential, Food intake, Interpretive description, Palliative care
National Category
Health Sciences Nursing
Identifiers
urn:nbn:se:esh:diva-4903 (URN)10.1017/S1478951514001199 (DOI)25335943 (PubMedID)
Note

Publication status in dissertation: Published online october 22

Available from: 2015-11-05 Created: 2015-11-05 Last updated: 2017-02-15Bibliographically approved
2. Maintaining ordinariness around food: partners' experienceies of everyday life with a dying person.
Open this publication in new window or tab >>Maintaining ordinariness around food: partners' experienceies of everyday life with a dying person.
Show others...
2014 (English)In: Journal of Clinical Nursing, ISSN 0962-1067, E-ISSN 1365-2702, Vol. 23, no 19-20, 2748-2756 p.Article in journal (Refereed) Published
Abstract [en]

Aims and objectives: To explore partners’ experiences of everyday life in caring for a dying person with eating deficiencies at home.

Background: When a dying person receives care at home, eating deficiencies can influence everyday life for family members, who often take responsibility for the provision of food and meals. The literature reveals this to be emotionally stressful. Partners of dying persons are challenged both as caregivers and as partners who will soon lose their life companion. There is a need for studies that provide enhanced understanding about the influence of dying persons’ eating deficiencies on their partners, from the perspective of everyday life.

Design: A qualitative design was chosen to obtain experience-based knowledge of relevance for the clinical context of palliative home care.

Methods: Nine people were purposefully selected and interviewed three–six months after the death of their partner. Data collection and analysis were guided by an interpretive descriptive method.

Results: The partners described experiences of how eating deficiencies brought about changes in the participants’ everyday lives. Two patterns of experiences were identified: the challenge of doing the best for their dying partner around matters involving food and mealtimes, and experiences of striving to maintain ordinariness, including holding on to social values around food, despite experiences of unfamiliarity when the dying partners’ habits were changed.

Conclusion:Living close to a person who has eating deficiencies at the end of life is challenging, both from a caring perspective and for personal well-being.

Relevance to clinical practice: The findings can assist palliative home care teams and other healthcare professionals to give support that goes beyond giving practical advice about food. Initiating talk about the current situation around food and meals at home, by posing questions and opening the way for conversations, is suggested.

Keyword
Eating, Everyday life, Family, Food, Interview, Palliative care, Qualitative research
National Category
Nursing
Identifiers
urn:nbn:se:esh:diva-4149 (URN)10.1111/jocn.12518 (DOI)24372727 (PubMedID)
Note

This research was funded by the Erling-Persson Family Foundation and Ersta Sköndal University College.

Available from: 2014-10-23 Created: 2014-10-23 Last updated: 2017-02-15Bibliographically approved

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