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Ändlös omsorg och utmätt hälsa: Föräldraskapets paradoxer när ett vuxet barn har långvarig psykisk sjukdom
Örebro University, School of Health and Medical Sciences, Örebro University, Sweden.
2014 (Swedish)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

The overall aim of this thesis was to deepen knowledge of what it means to be a parent of an adult child who suffers from long-term mental illness. Data collection in studies I-III consisted of qualitative interviews with 26 parents. In study I, 16 mothers and, in study II, 10 fathers were interviewed about the way in which their everyday life was affected when an adult child suffers from long-term mental illness. Data were analysed using qualitative content analysis. In study III, the same 26 parents participated as in studies I-II. The aim of the study was to investigate parents’ conceptions of the mental health care. Data were analysed by means of the phenomenographic method. Study IV is based on questionnaires completed by 151 parents. The aim was to investigate mothers’ and fathers’ health related quality of life (HRQOL) focusing on self-rated symptoms of anxiety, depression and burden as well as their experiences of encounters with the mental health services. Data were analysed for the most part by means of non-parametric method.

The mothers’ everyday life was characterized by constant preparedness to adapt their life situation to the needs of their child (I). The fathers’ inherent ongoing struggle to ensure the child’s well-being required both strength and courage. Fathers attempted to maintain a good balance in life; this balancing act depended on collaboration between those involved in the child’s life, the family, the healthcare services and other authorities (II). The parents described feeling excluded from professional care and questioned its quality and accessibility (III). Mothers’ self-rated HRQOL was lower and they were also affected by burden and mental ill health to a greater extent than the fathers (IV).

The results highlight shortcomings in the interaction between parents and mental health professionals. This highlights the importance of interventions that support and strengthen cooperation between parents and mental health professionals in the care of children who suffer from mental illness.

Place, publisher, year, edition, pages
Örebro: Örebro university , 2014. , p. 79
Series
Örebro Studies in Care Sciences, ISSN 1652-1153 ; 53
Keywords [en]
parent, mother, father, adult child, mental illness, mental healthcare, health-related quality of life
National Category
Medical and Health Sciences Nursing
Research subject
Nursing Science
Identifiers
URN: urn:nbn:se:oru:diva-34609ISBN: 978-91-7529-016-4 (print)OAI: oai:DiVA.org:oru-34609DiVA, id: diva2:710765
Public defence
2014-05-16, Prismahuset, Hörsal 2, Örebro universitet, Fakultetsgatan 1, Örebro, 13:00 (Swedish)
Opponent
Available from: 2014-04-08 Created: 2014-04-08 Last updated: 2017-10-17Bibliographically approved
List of papers
1. Mothers' Everyday Experiences of Having an Adult Child Who Suffers from Long-Term Mental Illness
Open this publication in new window or tab >>Mothers' Everyday Experiences of Having an Adult Child Who Suffers from Long-Term Mental Illness
2010 (English)In: Issues in Mental Health Nursing, ISSN 0161-2840, E-ISSN 1096-4673, Vol. 31, no 11, p. 692-699Article in journal (Refereed) Published
Abstract [en]

This paper aims to describe everyday life experiences of mothers who have an adult child with a long-term mental illness. Sixteen mothers were interviewed. A content analysis resulted in one main theme: My adult child who is struggling with mental illness is always on my mind, and three subthemes: (1) living a life under constant strain, (2) living with an emotional burden, and (3) seeing light in the darkness despite difficulties. Knowledge of mothers’ everyday life experiences is of great importance in order to support them and thereby increase the possibility of these mothers being a source of strength for their child.

National Category
Humanities
Research subject
Caring sciences
Identifiers
urn:nbn:se:oru:diva-27597 (URN)10.3109/01612840.2010.515768 (DOI)20936890 (PubMedID)2-s2.0-77958097228 (Scopus ID)
Available from: 2013-03-22 Created: 2013-02-16 Last updated: 2021-03-21Bibliographically approved
2. Fathers’ everyday experiences of having an adult child who suffers from long-term mental illness
Open this publication in new window or tab >>Fathers’ everyday experiences of having an adult child who suffers from long-term mental illness
2012 (English)In: Issues in Mental Health Nursing, ISSN 0161-2840, E-ISSN 1096-4673, Vol. 3, no 2, p. 109-117Article in journal (Refereed) Published
Abstract [en]

The purpose of this study is to describe the everyday life experiences of fathers of adult children who have various forms of long-term mental illness. Ten fathers were interviewed. Content analysis revealed one main theme: Maintaining a strong façade while balancing on a thin line, and two sub-themes: (1) A constant struggle and (2) A feeling of powerlessness. The fathers demonstrated great engagement and good will to participate in their child's life. A sense of powerlessness and frustration at not having or being allowed freedom of action emerged. Cooperation between children, parents, the care service providers, and the authorities could increase the parents’ abilities to provide adequate support to the child as well as helping them to understand and make the incomprehensible manageable.

Place, publisher, year, edition, pages
Philadelphia, USA: Taylor & Francis, 2012
National Category
Medical and Health Sciences Nursing
Research subject
Medicine
Identifiers
urn:nbn:se:oru:diva-27598 (URN)10.3109/01612840.2011.627106 (DOI)22273345 (PubMedID)2-s2.0-84856368647 (Scopus ID)
Available from: 2013-03-22 Created: 2013-02-16 Last updated: 2021-03-21Bibliographically approved
3. Conceptions of mental health care: from the perspective of parents’ of adult children suffering from mental illness
Open this publication in new window or tab >>Conceptions of mental health care: from the perspective of parents’ of adult children suffering from mental illness
2014 (English)In: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 28, no 3, p. 496-504Article in journal (Refereed) Published
Abstract [en]

The aim of this study was to describe parents' conceptions of the mental health care provided to adult children suffering from mental illness. Data were collected using qualitative research interviews with a purposive sample of sixteen mothers and ten fathers. Phenomenographic analysis was used to identify conceptions and formulate descriptive categories. The first category, questioning the availability of care, describes mental health care as being unequal in terms of accessibility and lacking in continuity. The second category, disapproval of parental exclusion, illustrates conceptions that mental healthcare professionals disregard parents and do not provide them with adequate information. The third category, questioning the quality of care, encompasses conceptions of lack of trust in the professionals' competence, an unsatisfactory environment as well as inadequate cooperation with other healthcare providers and authorities. Positive aspects, such as being seen and confirmed, were mentioned as valuable by the parents.

Place, publisher, year, edition, pages
Wiley-Blackwell, 2014
Keywords
mother, father, parent, adult child, mental illness, mental health care, phenomenography.
National Category
Nursing
Research subject
Health and Medical Care Research; Nursing Science
Identifiers
urn:nbn:se:oru:diva-34617 (URN)10.1111/scs.12074 (DOI)000340288100009 ()23980612 (PubMedID)2-s2.0-84904999092 (Scopus ID)
Note

Accepterad juli 2013.

In thesis named "Parents’ conceptions of adult mental health care: aphenomenographic study"

Available from: 2014-04-08 Created: 2014-04-08 Last updated: 2021-03-21Bibliographically approved
4. Health-Related Quality of Life: from the perspective of mothers and fathers of adult children suffering from longterm mental disorders
Open this publication in new window or tab >>Health-Related Quality of Life: from the perspective of mothers and fathers of adult children suffering from longterm mental disorders
Show others...
2015 (English)In: Archives of Psychiatric Nursing, ISSN 0883-9417, E-ISSN 1532-8228, Vol. 9, no 3, p. 180-185Article in journal (Refereed) Published
Abstract [en]

There is a lack of studies on mothers' and fathers' experiences of Health-Related Quality of Life (HRQOL) associated with caregiving of adult children suffering from mental disorder. A cross-sectional study was therefore carried out with 108 mothers and 43 fathers. Data were collected by means of the Short Form Health Survey (SF-36), the Hospital Anxiety and Depression Scale (HADS), the Family Involvement and Alienation Questionnaire (FIAQ) and the Burden Assessment Scale (BAS). Mothers' HRQOL was affected more than fathers' and lower compared to Swedish age related norms. HRQOL was predominantly related to ratings on HADS and BAS.

Place, publisher, year, edition, pages
Saunders Elsevier, 2015
National Category
Nursing
Identifiers
urn:nbn:se:oru:diva-34618 (URN)10.1016/j.apnu.2015.02.002 (DOI)000355642600010 ()26001718 (PubMedID)2-s2.0-84929701991 (Scopus ID)
Note

Funding agencies:

Division of Psychiatry, Skaraborg Hospital  

Research Fund at Skaraborg Hospital  

Skaraborg Research and Development Council 

 Skaraborg Institute for Research and Development  

Research Committee, Orebro County Council 

Available from: 2014-04-08 Created: 2014-04-08 Last updated: 2021-02-23Bibliographically approved

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