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Relatives' participation in everyday care in special care units for persons with dementia
Karlstad University, Faculty of Health, Science and Technology (starting 2013), Department of Health Sciences. Østfold University College, Norway.
Karlstad University, Faculty of Health, Science and Technology (starting 2013), Department of Health Sciences.
Karlstad University, Faculty of Health, Science and Technology (starting 2013), Department of Health Sciences.ORCID iD: 0000-0003-0417-6161
2014 (English)In: Nursing Ethics, ISSN 0969-7330, E-ISSN 1477-0989, Vol. 22, no 4, p. 404-416Article in journal (Refereed) Published
Abstract [en]

Background: Research concerning relatives' participation in the everyday care related to persons living in special care units for persons with dementia is limited.

Research questions: To examine relatives' participation in their near one's everyday care, the level of burden experienced and important factors for participation, in this special context.

Design: The study had a cross-sectional design, and data collection was carried out by means of a study-specific questionnaire.

Participants and context: A total of 233 relatives from 23 different special care units participated.

Ethical consideration: The study was approved by the Norwegian Social Science Data Services.

Results: A great majority of relatives reported that they visited weekly and were the resident's spokesperson, but seldom really participated in decisions concerning their everyday care. Participation was seldom reported as a burden.

Discussion: This study indicated that relatives were able to make a difference to their near one's everyday life and ensure quality of care based on their biographical expertise, intimate knowledge about and emotional bond with the resident. Since knowing the resident is a prerequisite for providing individualised care that is in line with the resident's preferences, information concerning these issues is of utmost importance.

Conclusion: This study prompts reflection about what it is to be a spokesperson and whether everyday care is neglected in this role. Even though relatives were satisfied with the care provided, half of them perceived their participation as crucial for the resident's well-being. This indicated that relatives were able to offer important extras due to their biographical expertise, intimate knowledge about and emotional bond with the resident. Good routines securing that written information about the residents' life history and preferences is available and used should be implemented in practice.

Place, publisher, year, edition, pages
Sage Publications, 2014. Vol. 22, no 4, p. 404-416
National Category
Nursing
Research subject
Nursing Science
Identifiers
URN: urn:nbn:se:kau:diva-29560DOI: 10.1177/0969733014538886ISI: 000356424400003PubMedID: 25070751OAI: oai:DiVA.org:kau-29560DiVA, id: diva2:656880
Available from: 2013-10-17 Created: 2013-10-17 Last updated: 2017-08-15Bibliographically approved
In thesis
1. Patient participation in everyday life in special care units for persons with dementia
Open this publication in new window or tab >>Patient participation in everyday life in special care units for persons with dementia
2013 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

The aim of this thesis was to acquire knowledge about patient participation in everyday life of persons with dementia living in SCUs in nursing homes.

Data collection and analysis in studies I-III was carried out according to Grounded Theory. Data was collected by open non- participant observations during 51 hours, and conversations with 8 residents and 17 health care personnel (I), interviews carried out twice with 12 relatives (II) and 11 nursing personnel (III), and by a study specific questionnaire based on the findings from study I-II to 233 relatives (IV). Descriptive and non-parametric statistics were used (IV).

Presence of nursing personnel in body, mind and morality was found to be the prerequisite for patient participation (I). This required personnel with high competence in dementia care, commitment to and interest in the resident, and continuity in their work (I, III). Wellbeing and dignity in the resident’s everyday life was found to be the most important goal, not necessarily a high level of patient participation (II-III). The level of participation had to be adjusted to the resident’s ability and wish to take part in decisions in the very moment. However, the level was often primarily adjusted to suit the personnel’s ideas about how to carry out daily care (I, III). Relatives had an important role in the participation process by interacting, and exchanging information, with the personnel. By forming a basis for individualised care in this way, relatives made a difference to the resident’s everyday life and contributed to their wellbeing and dignity (II-IV). The SCU’s context also affected patient participation (I-IV).

Patient participation must be given attention by leaders and be prioritised in dementia care. Nursing personnel can enhance patient participation by promoting relatives’ partaking in the participation process, as this has potential for further contributing to quality of care.

Place, publisher, year, edition, pages
Karlstad: Karlstads universitet, 2013. p. 70
Series
Karlstad University Studies, ISSN 1403-8099 ; 2013:43
Keywords
Patient participation, dementia, special care units for persons with dementia (SCUs), relatives, nursing personnel, grounded theory, cross-sectional
National Category
Nursing
Research subject
Nursing Science
Identifiers
urn:nbn:se:kau:diva-29208 (URN)978-91-7063-520-5 (ISBN)
Public defence
2013-11-08, Lagerlöfsalen, 1A 305, Karlstads universitet, Karlstad, 10:00 (Norwegian)
Opponent
Supervisors
Available from: 2013-10-17 Created: 2013-09-27 Last updated: 2017-08-15Bibliographically approved

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