Universität zu Köln

Knop, Jannis ORCID: 0000-0002-5143-6395, Dust, Gloria, Kasdorf, Alina, Schippel, Nicolas, Rietz, Christian, Strupp, Julia and Voltz, Raymond . Unsolved problems and unwanted decision-making in the last year of life: A qualitative analysis of comments from bereaved caregivers. Palliat. Support Care. NEW YORK: CAMBRIDGE UNIV PRESS. ISSN 1478-9523

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Abstract

Objectives Patients in their last year of life, as well as their relatives, often feel that existent care structures of the healthcare system do not adequately address their individual needs and challenges. This study analyzes unmet needs in terms of unsolved problems and unwanted decision-making in the health and social care of patients in their last year of life from the perspective of bereaved caregivers. Methods This qualitative study is based on free-text comments from informal caregivers of deceased patients collected as part of the Last-Year-of-Life-Study-Cologne (LYOL-C) using a postal survey. With qualitative content analysis, a category system with main and subcategories was developed in a multi-step process. Results Free-text commentaries and demographic data were collected from 240 bereaved caregivers. Particularly outside of hospice and palliative care services, study participants addressed the following unsolved problems: poor communication with medical and nursing staff, insufficient professional support for informal caregivers, inadequate psycho-social support for patients, and poor management of pain and other symptoms. Respondents often stated that their relative had to be cared for and die outside their own home, which the relative did not want. Significance of results Our findings suggest the necessity for greater awareness of patients' and their relatives' needs in the last year of life. Addressing individual needs, integrating palliative and hospice care in acute hospitals and other healthcare structures, and identifying patients in their last year of life and their caregivers could help to achieve more targeted interventions and optimization of care.

Item Type:	Journal Article
Creators:	Creators Email ORCID ORCID Put Code Knop, Jannis UNSPECIFIED orcid.org/0000-0002-5143-6395 UNSPECIFIED Dust, Gloria UNSPECIFIED UNSPECIFIED UNSPECIFIED Kasdorf, Alina UNSPECIFIED UNSPECIFIED UNSPECIFIED Schippel, Nicolas UNSPECIFIED UNSPECIFIED UNSPECIFIED Rietz, Christian UNSPECIFIED UNSPECIFIED UNSPECIFIED Strupp, Julia UNSPECIFIED UNSPECIFIED UNSPECIFIED Voltz, Raymond UNSPECIFIED UNSPECIFIED UNSPECIFIED
URN:	urn:nbn:de:hbz:38-668512
DOI:	10.1017/S1478951522000165
Journal or Publication Title:	Palliat. Support Care
Publisher:	CAMBRIDGE UNIV PRESS
Place of Publication:	NEW YORK
ISSN:	1478-9523
Language:	English
Faculty:	Unspecified
Divisions:	Unspecified
Subjects:	no entry
Uncontrolled Keywords:	Keywords Language ASSESSMENT TOOL CSNAT; PALLIATIVE CARE; CANCER-PATIENTS; HEALTH-CARE; END; NEEDS; PAIN; HOME; COMMUNICATION; EXPERIENCE Multiple languages Health Policy & Services Multiple languages
URI:	http://kups.ub.uni-koeln.de/id/eprint/66851