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Patient participation in everyday life in special care units for persons with dementia
Karlstad University, Faculty of Health, Science and Technology (starting 2013), Department of Health Sciences.
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. , 70 p.
Series
Karlstad University Studies, ISSN 1403-8099 ; 2013:43
Keyword [en]
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: urn:nbn:se:kau:diva-29208ISBN: 978-91-7063-520-5OAI: oai:DiVA.org:kau-29208DiVA: diva2:651778
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: 2013-10-17Bibliographically approved
List of papers
1. ‘Patient participation’ in everyday activities in special care units for persons with dementia in Norwegian nursing homes
Open this publication in new window or tab >>‘Patient participation’ in everyday activities in special care units for persons with dementia in Norwegian nursing homes
2010 (English)In: International Journal of Older People Nursing, ISSN 1748-3735, Vol. 5, no 2, 169-178 p.Article in journal (Refereed) Published
Abstract [en]

Aim.  The aim of this study was to explore ‘patient participation’ in everyday activities for persons with dementia living in special care units in nursing homes. Background.  Studies about how ‘patient participation’ appears in the context of special care units for persons with dementia are lacking. Design.  The study has an explorative design. Method.  Grounded theory was chosen. Data collection was carried out by means of open observations and additional conversations with residents and personnel. Simultaneously, data analysis was performed with open, axial and selective coding. Findings.  The findings showed that ‘patient participation’ concerned ‘A matter of presence’ as the core category. The other categories described as ‘presence of personnel’ and ‘presence of residents’, were strongly connected to the core category as well as to each other. Presence of personnel comprised three levels; being there in body, which required physical presence; being there in mind, which required presence with all senses based on knowledge and competence; and being there in morality which was understood as being fully present, as it was based on humanistic values and included the two other levels. Presence of residents comprised ‘ability and wish’ and ‘adaptation’. The presence of the personnel had a huge impact on the ability and will to participate of the residents. Organizational conditions concerning leadership, amount of personnel and routines as well as housing conditions concerning architecture and shared accommodation, could stimulate or hinder ‘patient participation’. Conclusions and implications.  The study highlighted the great impact of the personnel’s presence in body, mind and morality on the participation capacity of the residents. The great importance of the nurse leaders was stressed, as they were responsible for organizational issues and served as role models. Group supervision of the personnel and their leaders would be an implication to propose, as these kinds of reflection groups offer opportunities to reflect on values, actions and routines.

Place, publisher, year, edition, pages
Blackwell Publishing, 2010
National Category
Nursing
Research subject
Nursing Science
Identifiers
urn:nbn:se:kau:diva-11999 (URN)10.1111/j.1748-3743.2010.00223.x (DOI)
Available from: 2012-03-05 Created: 2012-03-05 Last updated: 2014-12-11Bibliographically approved
2. How do relatives of persons with dementia experience their role in the patient participation process in special care units?
Open this publication in new window or tab >>How do relatives of persons with dementia experience their role in the patient participation process in special care units?
2013 (English)In: Journal of Clinical Nursing, ISSN 0962-1067, E-ISSN 1365-2702, Vol. 22, no 11/12, 1672-1681 p.Article in journal (Refereed) Published
Abstract [en]

Aims and objective To explore the role of relatives in the patient participation process for persons with dementia living in special care units in Norwegian nursing homes, with focus on everyday life. Background Studies exploring the experience of relatives of persons with dementia as to their role in the patient participation process are limited. Design The study had an explorative grounded theory design. Method Data collection was carried out by interviews with twelve close relatives. Simultaneously, data analysis was performed with open, axial and selective coding. Results The relatives' role in the patient participation process was experienced as transitions between different roles to secure the resident's well-being, which was understood as the resident's comfort and dignity. This was the ultimate goal for their participation. The categories 'being a visitor', 'being a spokesperson', 'being a guardian' and 'being a link to the outside world' described the different roles. Different situations and conditions triggered different roles, and the relatives' trust in the personnel was a crucial factor. Conclusions The study has highlighted the great importance of relatives' role in the patient participation process, to secure the well-being of residents living in special care units. Our findings stress the uttermost need for a high degree of competence, interest and commitment among the personnel together with a well functioning, collaborative and cooperative relationship between the personnel and the relatives of persons with dementia. The study raises several important questions that emphasise that more research is needed. Relevance to clinical practice Relatives need to be seen and treated as a resource in the patient participation process in dementia care. More attention should be paid to initiating better cooperation between the personnel and the relatives, as this may have a positive impact both on the residents' and the relatives' well-being.

National Category
Nursing
Research subject
Nursing Science
Identifiers
urn:nbn:se:kau:diva-29558 (URN)10.1111/jocn.12028 (DOI)000317614300021 ()23134237 (PubMedID)
Available from: 2013-10-17 Created: 2013-10-17 Last updated: 2014-12-11Bibliographically approved
3. Patient participation in special care units for persons with dementia: A losing principle?
Open this publication in new window or tab >>Patient participation in special care units for persons with dementia: A losing principle?
2014 (English)In: Nursing Ethics, ISSN 0969-7330, E-ISSN 1477-0989, Vol. 21, no 1, 108-118 p.Article in journal (Refereed) Published
Abstract [en]

The aim of this study was to explore the experience of nursing personnel with respect to patient participation in special care units for persons with dementia in nursing homes, with focus on everyday life. The study has an explorative grounded theory design. Eleven nursing personnel were interviewed twice. Patient participation is regarded as being grounded in the idea that being master of one's own life is essential to the dignity and self-esteem of all people. Patient participation was described at different levels as letting the resident make their own decisions, adjusting the choices, making decisions on behalf of the residents and forcing the residents. The educational level and commitment of the nursing personnel and how often they were on duty impacted the level that each person applied, as did the ability of the residents to make decisions, and organizational conditions, such as care culture, leadership and number of personnel.

Place, publisher, year, edition, pages
Sage Publications, 2014
National Category
Nursing
Research subject
Nursing Science
Identifiers
urn:nbn:se:kau:diva-29559 (URN)10.1177/0969733013486796 (DOI)000330272400011 ()23793069 (PubMedID)
Available from: 2013-10-17 Created: 2013-10-17 Last updated: 2015-07-29Bibliographically approved
4. Relatives' participation in everyday care in special care units for persons with dementia
Open this publication in new window or tab >>Relatives' participation in everyday care in special care units for persons with dementia
2014 (English)In: Nursing Ethics, ISSN 0969-7330, E-ISSN 1477-0989, Vol. 22, no 4, 404-416 p.Article 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
National Category
Nursing
Research subject
Nursing Science
Identifiers
urn:nbn:se:kau:diva-29560 (URN)10.1177/0969733014538886 (DOI)000356424400003 ()25070751 (PubMedID)
Available from: 2013-10-17 Created: 2013-10-17 Last updated: 2016-04-11Bibliographically approved

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