Hostname: page-component-78c5997874-4rdpn Total loading time: 0 Render date: 2024-11-17T19:41:50.678Z Has data issue: false hasContentIssue false
  • English
  • Français

Meanings of eating deficiencies for people admitted to palliative home care

Published online by Cambridge University Press:  22 October 2014

Viktoria Wallin ,
Ida Carlander ,
P.-O. Sandman  and
Cecilia Håkanson
Viktoria Wallin*
Affiliation:
Department of Neurobiology, Care Science and Society, Karolinska Institutet, Stockholm, Sweden Palliative Research Centre, Ersta Sköndal University College and Ersta Hospital, Stockholm, Sweden
Ida Carlander
Affiliation:
Palliative Research Centre, Ersta Sköndal University College and Ersta Hospital, Stockholm, Sweden Department of Learning, Informatics, Management and Ethics, Karolinska Institutet, Stockholm, Sweden
P.-O. Sandman
Affiliation:
Department of Neurobiology, Care Science and Society, Karolinska Institutet, Stockholm, Sweden
Cecilia Håkanson
Affiliation:
Department of Neurobiology, Care Science and Society, Karolinska Institutet, Stockholm, Sweden Palliative Research Centre, Ersta Sköndal University College and Ersta Hospital, Stockholm, Sweden
*
Address correspondence and reprint requests to: Viktoria Wallin, Palliative Research Centre, Ersta Sköndal University College and Ersta Hospital, P.O. Box 111 89, SE-100 61 Stockholm, Sweden. E-Mail: viktoria.wallin@esh.se
Get access Rights & Permissions [Opens in a new window]

Abstract

Objective:

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.

Method:

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.

Results:

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.

Significance of Results:

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.

Keywords

Eating deficienciesFood intakeExistentialInterpretive descriptionPalliative care
Type
Original Articles
Information
Palliative & Supportive Care , Volume 13 , Issue 5 , October 2015 , pp. 1231 - 1239
Copyright
Copyright © Cambridge University Press 2014 

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

REFERENCES

Andersson, I. & Sidenvall, B. (2001). Case studies of food shopping, cooking and eating habits in older women with Parkinson's disease. Journal of Advanced Nursing, 35, 68–78.Google Scholar
Bennell, J. & Taylor, C. (2013). A loss of social eating: The experience of individuals living with gastroparesis. Journal of Clinical Nursing, 22, 2812–2821.Google Scholar
Benzein, E., Norberg, A. & Saveman, B.-I. (2001). The meaning of the lived experience of hope in patients with cancer in palliative home care. Palliative Medicine, 15, 117–126.Google Scholar
Borgsteede, S.D., Deliens, L., Beentjes, B., et al. (2007). Symptoms in patients receiving palliative care: A study on patient–physician encounters in general practice. Palliative Medicine, 21, 417–423.Google Scholar
Bernhardson, B.-M., Tishelman, C. & Rutqvist, L.-E. (2008). Self-reported taste and smell changes during cancer chemotherapy. Supportive Care in Cancer, 16, 275–283.CrossRefGoogle ScholarPubMed
Byrne, A., Ellershaw, J., Holcombe, C., et al. (2002). Patients' experience of cancer: Evidence of the role of “fighting” in collusive clinical communication. Patient Education and Counseling, 48, 15–21.Google Scholar
Carlander, I. (2011). Me-ness and we-ness in a modified everyday life close to death at home. Doctoral dissertation. Stockholm: Karolinska Institutet.Google Scholar
DelRio, M.I., Shand, B., Bonati, P., et al. (2012). Hydration and nutrition at the end of life: A systematic review of emotional impact, perceptions, and decision making among patients, family and health care staff. Psycho-Oncology, 21, 913–921.CrossRefGoogle Scholar
Hakanson, C. (2014). Everyday life, healthcare, and self-care management among people with irritable bowel syndrome: An integrative review of qualitative research. Gastroenterology Nursing, 7, 217–222.CrossRefGoogle Scholar
Hinsley, M.H. (2007). The reflections you get: An exploration of body image and cachexia. International Journal of Palliative Nursing, 13, 84–89.Google Scholar
Hopkinson, J.B. (2007). How people with advanced cancer manage changing eating habits. Journal of Advanced Nursing, 59, 454–462.Google Scholar
Hopkinson, J.B. & Corner, J. (2006). Helping patients with advanced cancer live with concerns about eating: A challenge for palliative care professionals. Journal of Pain and Symptom Management, 31, 293–305.Google Scholar
Hopkinson, J.B., Wright, D.M., McDonald, J.W., et al. (2006). The prevalence of concern about weight loss and change in eating habits in people with advanced cancer. Journal of Pain and Symptom Management, 32, 322–331.Google Scholar
Jacobsson, A., Pihl, E., Mårtensson, J., et al. (2004). Emotions, the meaning of food and heart failure: A grounded theory study. Journal of Advanced Nursing, 46, 514–22.CrossRefGoogle ScholarPubMed
Jaspers, K. (1970). Philosophy of existence. Philadelphia: University of Pennsylvania Press.Google Scholar
Jastran, M.M., Bisogni, C.A., Sobal, J., et al. (2009). Eating routines: Embedded, value based, modifiable, and reflective. Appetite, 52, 127–136.Google Scholar
Klinke, M.E., Hafsteinsdóttir, T.B., Thorstenseinsson, B., et al. (2013). Living at home with eating difficulties following stroke: A phenomenological study of younger people's experiences. Journal of Clinical Nursing, 23, 250–260.Google Scholar
Kullberg, K., Björklund, A., Sidenvall, B., et al. (2011). “I start my day by thinking about what we're going to have for dinner”: A qualitative study on approaches to food-related activities among elderly men with somatic diseases. Scandinavian Journal of Caring Sciences, 25, 227–234.Google Scholar
Lawton, J. (2000). The dying process: Patients' experiences of palliative care. New York: Routledge.Google Scholar
Lazarus, R.S. & Folkman, S. (1984). Stress, appraisal, and coping. New York: Springer Publishing Company.Google Scholar
Logue, A.W. (2004). The psychology of eating and drinking. New York: Routledge.Google Scholar
Lowes, L. & Gill, P. (2006). Participants' experiences of being interviewed about an emotive topic. Journal of Advanced Nursing, 55, 587–595.Google Scholar
Marks, D.L., Butler, A.A., Turner, R., et al. (2003). Differential role of melanocortin receptor subtypes in cachexia. Endocrinology, 144, 1513–1523.Google Scholar
McClement, S.E., Degner, L.F. & Harlos, M. (2004). Family responses to declining intake and weight loss in a terminally ill relative, part 1: Fighting back. Journal of Palliative Care, 20, 93–100.Google Scholar
McGreevy, J., Orrevall, Y., Belqaid, K., et al. (2014). Characteristics of taste and smell alterations reported by patients after starting treatment for lung cancer. Supportive Care in Cancer, 22(10), 2635–2644.Google Scholar
McQuestion, M., Fitch, M. & Howell, D. (2011). The changed meaning of food: Physical, social and emotional loss for patients having received radiation treatment for head and neck cancer. European Journal of Oncology Nursing, 15, 145–151.Google Scholar
Muir, C.I. & Linklater, G.T. (2011). A qualitative analysis of the nutritional requirements of palliative care patients. Journal of Human Nutrition and Dietetics, 24, 470–478.Google Scholar
Oberholzer, R., Hopkinson, J., Baumann, K., et al. (2013). Psychosocial effects of cancer cachexia: A systematic literature search and qualitative analysis. Journal of Pain and Symptom Management, 4, 77–95.Google Scholar
Odenkrants, S., Ehnfors, M. & Grobe, S.J. (2002). Living with chronic obstructive pulmonary disease, part 1: Struggling with meal-related situations. Scandinavian Journal of Caring Science, 19, 230–239.Google Scholar
Orrevall, Y., Tishelman, C., Herrington, M., et al. (2004). The path from oral nutrition to home parenteral nutrition: A qualitative interview study of the experiences of advanced cancer patients and their families. Clinical Nutrition, 23, 1280–1287.CrossRefGoogle ScholarPubMed
Plata-Salamán, C.R. (2000). Central nervous system mechanisms contributing to the cachexia–anorexia syndrome. Nutrition 16, 1009–1012.Google Scholar
Potter, J., Hami, F., Bryan, T., et al. (2003). Symptoms in 400 patients referred to palliative care services: Prevalence and patterns. Palliative Medicine, 17, 310–314.Google Scholar
Reid, J., McKenna, H., Fitzsimons, D., et al. (2009 a). The experience of cancer cachexia: A qualitative study of advanced cancer patients and their family members. International Journal of Nursing Studies, 46, 606–616.Google Scholar
Reid, J., McKenna, H., Fitzsimons, D., et al. (2009 b). Fighting over food: Patient and family understanding of cancer cachexia. Oncology Nursing Forum, 36, 439–445.CrossRefGoogle ScholarPubMed
Roe, J.W., Leslie, P. & Drinnan, M.J. (2007). Oropharyngeal dysphagia: The experience of patients with non–head and neck cancers receiving specialist palliative care. Palliative Medicine, 21, 567–574.Google Scholar
Rosland, A.M., Heisler, M. & Piette, J.D. (2012). The impact of family behaviors and communication patterns on chronic illness outcomes: A systematic review. Journal of Behavioral Medicine, 35, 221–239.Google Scholar
Salander, P., Bergenheim, T. & Henriksson, R. (1996). The creation of protection and hope in patients with malignant brain tumours. Social Science & Medicine, 42, 985–996.CrossRefGoogle ScholarPubMed
Shragge, J.E., Wismer, W.V., Olsson, K.L., et al. (2006). The management of anorexia by patients with advanced cancer: A critical review of the literature. Palliative Medicine, 20, 623–629.Google Scholar
Souter, J. (2005). Loss of appetite: A poetic exploration of cancer patients' and their carvers' experiences. International Journal of Palliative Nursing, 11, 524–532.Google Scholar
Schütz, A. (1967). The phenomenology of the social world. Evanston: Northwestern University Press.Google Scholar
Strasser, F., Binswanger, J., Cerny, T., et al. (2007). Fighting a losing battle: Eating-related distress of men with advanced cancer and their female partners. A mixed-methods study. Palliative Medicine, 21, 129–137.CrossRefGoogle ScholarPubMed
Sutton, D.E. (2010). Food and the senses. Annual Review of Anthropology, 39, 209–223.Google Scholar
Tan, B. & Fearon, K. (2008). Cachexia: Prevalence and impact in medicine. Current Opinion in Clinical Nutrition and Metabolic Care, 11, 400–407.Google Scholar
Teunissen, S.C., Wesker, W., Kruitwagen, C., et al. (2007). Symptom prevalence in patients with incurable cancer: A systematic review. Journal of Pain and Symptom Management, 34, 94–104.Google Scholar
Thorne, S. (2008). Interpretive description. Walnut Creek, CA: Left Coast Press.Google Scholar
Thorne, S., Kirkham, S. & Flynn-Magee, K. (2004). The analytic challenge in interpretive description. International Journal of Qualitative Methods, 3, 1–11.Google Scholar
Wallin, V., Carlander, I., Sandman, P.-O., et al. (2013). Maintaining ordinariness around food: Partners' experiences of everyday life with a dying person. Journal of Clinical Nursing. Epub ahead of print 26 December 2013. doi: 10.1111/jocn.12518.Google Scholar
Westergren, A., Ohlsson, O. & Rahm Hallberg, I. (2001). Eating difficulties, complications and nursing interventions during a period of three months after a stroke. International Journal of Advanced Nursing, 35, 416–421.Google Scholar
Wilberg, P., Hjermstad, M., Ottessen, S., et al. (2012). Oral health is an important issue in end-of-life cancer care. Supportive Care in Cancer, 203, 3115–3122.Google Scholar
Whitworth, M.K., Whitfield, A., Holmes, S., et al. (2004). Doctor, does this mean I am going to starve to death? Journal of Clinical Oncology, 22, 199–201.Google Scholar