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Familjemedlem till person med psykossjukdom: bemötande och utanförskap i psykiatrisk vård
Örebro University, School of Health and Medical Sciences, Örebro University, Sweden.
2012 (Swedish)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

This thesis focused on the situation of family members of persons with psychotic illness, particular on their experience of the approach of the healthcare professionals and of their feelings of alienation regarding the professional care of their family member. A further aim was to explore how siblings who have participated in a support group for siblings experienced their situation.

A questionnaire was developed that enabled the aims of this thesis to be investigated (I). Seventy family members from various parts of Sweden participated, and data were collected via the questionnaire developed in study I (II-III). Thirteen siblings who previously had participated in a support group participated in follow-up focus groups interviews (IV).

The questionnaire developed was shown to be reliable and valid in these studies (I). In many cases, the participants had experienced an approach from professionals that indicated that they did not experience openness, confirmation and cooperation, and that they felt powerless and socially isolated in relation to the care. There was also found to be a certain degree of association between how the participants experienced the approach and whether they felt alienation (II). The majority of the participants considered openness, confirmation, and cooperation to be important aspects of professional’s approach. The result also identified a low level of agreement between the participants’ experience and what they considered to be significant in the professional’s approach (III). The findings revealed the complexity of being a sibling of an individual with psychotic illness. Participating in a support group for siblings can be of importance in gaining knowledge and minimizing feelings of being alone (IV).

Although the psychiatric care services in Sweden have been aware of the importance of cooperating with family members, the results indicated that there is a need for further research in this area. 

Place, publisher, year, edition, pages
Örebro: Örebro universitet , 2012. , 82 p.
Series
Örebro Studies in Care Sciences, ISSN 1652-1153 ; 35
Keyword [en]
Alienation, Family participation, Support group, Professional´s approach, Psychiatric health care services, Sibling.
National Category
Nursing
Research subject
Nursing Science
Identifiers
URN: urn:nbn:se:oru:diva-21460ISBN: 978-91-7668-858-8 (print)OAI: oai:DiVA.org:oru-21460DiVA: diva2:488711
Public defence
2012-03-26, Örebro universitet, Hörsal P1, Fakultetsgatan 1, Örebro, 14:00 (Swedish)
Opponent
Supervisors
Available from: 2012-02-02 Created: 2012-02-02 Last updated: 2016-03-16Bibliographically approved
List of papers
1. Developing the concept of family involvement and the alienation questionnaire in the context of psychiatric care
Open this publication in new window or tab >>Developing the concept of family involvement and the alienation questionnaire in the context of psychiatric care
2008 (English)In: International Journal of Mental Health Nursing, ISSN 1445-8330, E-ISSN 1447-0349, Vol. 17, no 6, 439-449 p.Article in journal (Refereed) Published
Abstract [en]

Research shows that family members of persons with a mental illness often experience a lack of involvement in the psychiatric care of their relative. An interpretation of the findings of these studies raises the question whether the family members’ experience of not being involved can be conceptualised in terms of alienation towards mental health services from their encounter with psychiatric care. 

In order to explore this possibility, the Family Involvement and Alienation Questionnaire (FIAQ) was constructed, guided by relevant theoretical frameworks and empirical research. The content validity of the questionnaire was evaluated by two groups of experienced researchers who had sound knowledge of the theoretical frameworks used. Validity based on the response process was evaluated by parents of persons with mental illness. The reliability of the questionnaire was evaluated by a test-retest design, in a group of 15 family members. The data were analysed by a non-parametric statistical method.

 

The results of the validity and reliability evaluations show that of the 46 original items 28 items in the questionnaire would be useful in exploring the concept of family involvement and alienation in the context of psychiatric care. Further, minor modification may make the FIAQ useful in exploring these concepts in other settings.

Place, publisher, year, edition, pages
London: Wiley- Blackwell, 2008
Keyword
Family involvement, Psychiatric care, Questionnarie, Reliability, Validity
National Category
Nursing
Research subject
Caring Sciences w. Medical Focus
Identifiers
urn:nbn:se:oru:diva-6202 (URN)10.1111/j.1447-0349.2008.00570.x (DOI)
Available from: 2009-04-04 Created: 2009-04-04 Last updated: 2015-01-19Bibliographically approved
2. Family members' involvement in psychiatric care: experiences of the healthcare professionals' approach and feeling of alienation
Open this publication in new window or tab >>Family members' involvement in psychiatric care: experiences of the healthcare professionals' approach and feeling of alienation
2010 (English)In: Journal of Psychiatric and Mental Health Nursing, ISSN 1351-0126, E-ISSN 1365-2850, Vol. 17, no 5, 422-432 p.Article in journal (Refereed) Published
Abstract [en]

The involvement of family members in psychiatric care is important for the recovery of persons with psychotic disorders and subsequently reduces the burden on the family. Earlier qualitative studies suggest that the participation of family members can be limited by how they experience the professionals’ approach, which suggests a connection to the concept of alienation. Thus, the aim of this study was in a national sample investigate family members’ experiences of the psychiatric health-care professionals’ approach. Data were collected by the Family Involvement and Alienation Questionnaire (FIAQ). The median level and quartiles were used to describe the distributions and data were analysed with non-parametric statistical methods. Seventy family members of persons receiving psychiatric care participated in the study.  

The results indicate that a majority of the participants respond that they have experiencing a negative approach from the professionals, indicating lack of confirmation and cooperation. The results also indicate that a majority of the participants felt powerlessness and social isolation in the care being provided, indicating feelings of alienation. A significant but weak association was found between the family members´ experiences of the professionals´ approach and their feelings of alienation.

Place, publisher, year, edition, pages
Oxford: Blackwell Publishing, 2010
Keyword
Family participation, professional-family relations, psychiatric care
National Category
Nursing
Research subject
Nursing Science
Identifiers
urn:nbn:se:oru:diva-11685 (URN)10.1111/j.1365-2850.2009.01539.x (DOI)000277869300005 ()
Available from: 2010-08-31 Created: 2010-08-31 Last updated: 2017-02-14Bibliographically approved
3. Family member's expectation of the psychiatric healthcare professionals' approach towards them
Open this publication in new window or tab >>Family member's expectation of the psychiatric healthcare professionals' approach towards them
2011 (English)In: Journal of Psychiatric and Mental Health Nursing, ISSN 1351-0126, E-ISSN 1365-2850, Vol. 18, no 2, 146-157 p.Article in journal (Refereed) Published
Abstract [en]

The importance of involving family members in the care of individuals with schizophrenia or other psychotic illnesses has received increasing attention within psychiatric health-care services. However, several studies suggest that family members often experience a lack of involvement. Furthermore, research indicates that family members’ experience of the professional’s approach has bearing on whether they feel involved or not. Thus, the aims of this study were to investigate the level of importance that the family members of individuals with schizophrenia or other psychotic illnesses ascribe to the professionals’ approach, the level of agreement between their experiences and what they consider as important, and aspects they consider to be important with regards to contact with professionals. Seventy family members from various parts of Sweden participated. Data were collected by the Family Involvement and Alienation Questionnaire and open-ended questions. The median level and quartiles were used to describe the distribution, and percentage agreement was analysed. Open-ended questions were analysed by qualitative content analysis. The results reveal that the majority of the participants consider Openness, Confirmation, and Cooperation as important aspects of a professional’s approach. Continuity emerged as an additional aspect. The results show a low level of agreement between the participants’ experience and what they consider as important.

Place, publisher, year, edition, pages
Oxford: Blackwell Publishing, 2011
Keyword
family expectation, family involvement, professional-family relations, professionals´approach, psychiatric healtcare services
National Category
Nursing
Research subject
Nursing Science
Identifiers
urn:nbn:se:oru:diva-14645 (URN)10.1111/j.1365-2850.2010.01647.x (DOI)000287096200010 ()21299727 (PubMedID)2-s2.0-79551628836 (Scopus ID)
Available from: 2011-02-16 Created: 2011-02-16 Last updated: 2017-02-10Bibliographically approved
4. A lonely life journey bordered with struggle: being a sibling of an individual with psychosis
Open this publication in new window or tab >>A lonely life journey bordered with struggle: being a sibling of an individual with psychosis
2012 (English)In: Issues in Mental Health Nursing, ISSN 0161-2840, E-ISSN 1096-4673, Vol. 33, no 3, 157-164 p.Article in journal (Refereed) Published
Abstract [en]

Research suggests that siblings of individuals with severe mental illness are affected by the situation of their affected sibling and that the health care services seem to partly fail in meeting their needs for support. The aim of this study was therefore to explore how siblings of individuals with a psychotic illness, and who have participated in a support group, experience their situation. Thirteen informants participated in focus group interviews, which were analysed by inductive content analysis. The findings were interpreted in an overall single theme: A lonely life journey bordered with struggle. This theme consists of three categories: facing existential thoughts, facing ambiguity in approach and engagement, and facing disparate attitudes and expectations.

Place, publisher, year, edition, pages
Philadelphia, USA: Informa Healthcare, 2012
Keyword
Qualitative content analysis, Focus group interview, Mutal support group, Psychotic illnesses, Siblings
National Category
Medical and Health Sciences Nursing
Research subject
Medicine
Identifiers
urn:nbn:se:oru:diva-21647 (URN)10.3109/01612840.2011.633735 (DOI)22364427 (PubMedID)2-s2.0-84857585605 (Scopus ID)
Available from: 2012-02-14 Created: 2012-02-14 Last updated: 2016-03-09Bibliographically approved

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