Nora Lize1, Vera IJmker-Hemink2, Rianne van Lieshout3, Yvonne Wijnholds-Roeters3, Manon van den Berg2, Maggy Youssef-El Soud3, Sandra Beijer4, Natasja Raijmakers4,5. 1. Research & Development, Netherlands Comprehensive Cancer Organisation, PO-box 19079, 3501 DB, Utrecht, The Netherlands. nlize@iknl.nl. 2. Department of Gastroenterology and Hepatology - Dietetics and Intestinal Failure, Radboud University Medical Centre, Nijmegen, The Netherlands. 3. Department of Dietetics, Maxima MC, Veldhoven, Veldhoven, The Netherlands. 4. Research & Development, Netherlands Comprehensive Cancer Organisation, PO-box 19079, 3501 DB, Utrecht, The Netherlands. 5. Netherlands Association for Palliative Care, Utrecht, The Netherlands.
Abstract
PURPOSE: Patients with cancer may experience emotions such as anger or sadness due to tumour- or treatment-related reduced ability to eat. These emotions can be provoked by patients' own struggle with eating, by misunderstanding of their struggle by others, or by less pleasure in social activities. Literature indicates that patients with cancer may experience a lack of information and support regarding psychosocial consequences of reduced ability to eat. The aim of this qualitative study is to gain insights into experiences with this information and support. METHOD: Transcripts of semi-structured interviews with 24 patients with cancer who experience(d) psychosocial consequences of reduced ability to eat were thematically analysed. Interviews were recorded, transcribed verbatim, and analysed using Atlas.ti. RESULTS: Patients expressed positive experiences with information and support for psychosocial consequences of reduced ability to eat while receiving multidisciplinary recognition and personalised care. Patients expressed negative experiences when healthcare professionals only assessed topics within their own expertise, or when healthcare professionals mainly focused on their nutritional intake. Informal support for reduced ability to eat was positively evaluated when informal caregivers tried to understand their situation. Evaluation of informal practical support varied among patients. CONCLUSION: Patients with cancer who experience psychosocial consequences of reduced ability to eat both need professional and informal support. Recognition of these consequences from healthcare professionals is important, as well as understanding from informal caregivers.
PURPOSE:Patients with cancer may experience emotions such as anger or sadness due to tumour- or treatment-related reduced ability to eat. These emotions can be provoked by patients' own struggle with eating, by misunderstanding of their struggle by others, or by less pleasure in social activities. Literature indicates that patients with cancer may experience a lack of information and support regarding psychosocial consequences of reduced ability to eat. The aim of this qualitative study is to gain insights into experiences with this information and support. METHOD: Transcripts of semi-structured interviews with 24 patients with cancer who experience(d) psychosocial consequences of reduced ability to eat were thematically analysed. Interviews were recorded, transcribed verbatim, and analysed using Atlas.ti. RESULTS:Patients expressed positive experiences with information and support for psychosocial consequences of reduced ability to eat while receiving multidisciplinary recognition and personalised care. Patients expressed negative experiences when healthcare professionals only assessed topics within their own expertise, or when healthcare professionals mainly focused on their nutritional intake. Informal support for reduced ability to eat was positively evaluated when informal caregivers tried to understand their situation. Evaluation of informal practical support varied among patients. CONCLUSION:Patients with cancer who experience psychosocial consequences of reduced ability to eat both need professional and informal support. Recognition of these consequences from healthcare professionals is important, as well as understanding from informal caregivers.
Entities:
Keywords:
Cancer; Caregivers; Eating; Patients focused care; Psycho-oncology; Qualitative research
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