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Living with schizophrenia from the perspective of outpatients and their parents
Linköping University, Department of Neuroscience and Locomotion, Psychiatry. Linköping University, Faculty of Health Sciences.
2004 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

The aim of this thesis was to investigate how outpatients with schizophrenia experienced their situation in terms of need and quality of life. A further aim was to investigate how their parents experienced the need of their daughter or son and how it influenced their own life. In order to investigate need and quality of life of outpatients with schizophrenia according to DSM-III-R, (n=19) at baseline and five-year follow-up (n=17) the outpatients completed the following questionnaires: Camberwell Assessment of Need (CAN-R), the Quality of Life Scale (QLS-100), the Global Assessment of function (1) and the Clinical Global Impression (CGI) at follow-up the Insight Scale (2). In study II, outpatients with schizophrenia according to DSM-IV (n=32) and their parents (n=44) and staff (n=31) were included. To investigate the outpatients' need both the patients, their parents and staff completed the CAN-R questionnaire. In study III, the quality of life of the parents (n=38) was investigated with the help of the questionnaire Quality of Life Index (QLI), which was completed by the parents and a reference group (n=689). In addition, the questionnaire Burden Assessment Scale (BAS) was used in order to describe the parents' burden. In order to better understand how living with outpatients with schizophrenia (n=8) influenced parents, the parents were interviewed and data were analysed according to the Empirical Phenomenological Psychological (EPP) method. The total number of needs in study I, according to CAN, was 7.1 ± 3.2 at the baseline and 6.3 ± 2.8 at the follow-up. Using our cut-off point, 5 patients at the baseline and 1 at the follow-up had greater problems. The outpatients were more satisfied with their quality of life after five years than baseline (p< 0.05). The need ranking of key workers and patients showed a correlation rho=0.68 (p<0.05) at the baseline and rho=0.74 (p<0.05) at the follow-up. The difference in number of needs was that the key workers identified more topics where the patients had needs than the patients did themselves. The outpatients in study II, rated the total score of the severity of needs at a mean of 7 ± 4, while the mean score for both parents and the staff was 9 ± 5. The unmet needs in mean values for the patients were 2 ± 2 and 4 ± 5 for both parents and the staff. The needs ranking between patients and parents and patients and staff both showed a correlation of rho=0.65 (p<0.01). The correlation between parents and staff was rho=0.95 (p<0.01). Parents and staff rated needs in different areas. There was a correlation between the total number of needs and how the patients functioned rho=0.53 (p <0.01) and the severity of illness rho=0.64 (p<0.01), respectively, assessed by GAF and CGI. The parents were significantly less satisfied with their overall quality of life with a mean value of 19.5 ± 4.0 compared with the reference group, which had a mean value of 21.2 ± 4.1 (p<0.05); however, when divided into age groups, there was no significant difference in quality of life in the oldest age group 71-80. There were significant correlations between lower overall quality of life and higher burden r=0.58 (p<0.01) as well as between lower psychological/spiritual values and higher burden r=0.42 (p<0.05). The experience of living with a mentally ill daughter or son includes both emotions and changed reality that parents must adapt to. Four points relating to the general structure of themes were identified; emotions in parenthood, changes in the families, interaction with others and adaptation to the illness. All the themes included also five subthemes: confusion following the first appearance of the illness, interpreting the illness and loss in terms of grief, the importance of support, adaptation to the loss and feelings about the future in terms of worry and hope. In order to support the outpatients and their parents, it is important to assess need, listen more on their experiences and increase our knowledge about their situation.

Place, publisher, year, edition, pages
Linköping: Linköpings universitet , 2004. , 56 p.
Series
Linköping University Medical Dissertations, ISSN 0345-0082 ; 848
National Category
Medical and Health Sciences
Identifiers
URN: urn:nbn:se:liu:diva-23545Local ID: 3017ISBN: 91-7373-821-2 (print)OAI: oai:DiVA.org:liu-23545DiVA: diva2:243859
Public defence
2004-05-14, Elsa Brändströmssalen, Hälsouniversitetet, Linköping, 09:15 (Swedish)
Opponent
Available from: 2009-10-07 Created: 2009-10-07 Last updated: 2012-11-01Bibliographically approved
List of papers
1. Need assessment and quality of life in outpatients with schizophrenia: a 5-year follow-up study
Open this publication in new window or tab >>Need assessment and quality of life in outpatients with schizophrenia: a 5-year follow-up study
2002 (English)In: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 16, no 4, 393-398 p.Article in journal (Refereed) Published
Abstract [en]

The present study is a 5-year follow-up of patients with schizophrenia who were in-patients for more than 3 months in 1993. In all, 19 patients fulfilled the criteria and were interviewed 6 months after their discharge. Seventeen of them also participated in a follow-up 5 years later. Their needs were independently rated by themselves and by their key workers according to the Camberwell Assessment of Need (CAN, research version 3.0). The interview with the patients also included quality of life assessed by the Quality of Life Scale (QLS-100). The results from CAN showed a difference when using a cut-off point for higher vs. lower problem at 10 needs. Using this cut-off point, five patients at the baseline and one at the follow-up had higher problems. The need ranking with key workers showed a correlation of ρ = 0.68 at the baseline and ρ = 0.74 at the follow-up. QLS-100 showed that the patient's total number of unsatisfied items were significantly higher (p = 0.01) at the baseline than at the follow-up. At the follow-up, full insight into their illness was shown by most of the patients. There are several possible explanations associated with the increased quality of life, e.g. less unsatisfied items among some patients and greater autonomy at the follow-up.

National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:liu:diva-27677 (URN)10.1046/j.1471-6712.2002.00107.x (DOI)12415 (Local ID)12415 (Archive number)12415 (OAI)
Available from: 2009-10-08 Created: 2009-10-08 Last updated: 2017-12-13
2. Needs in outpatients with schizophrenia, assessed by the patients themselves and their parents and staff
Open this publication in new window or tab >>Needs in outpatients with schizophrenia, assessed by the patients themselves and their parents and staff
2004 (English)In: Social Psychiatry and Psychiatric Epidemiology, ISSN 0933-7954, E-ISSN 1433-9285, Vol. 39, no 5, 381-385 p.Article in journal (Refereed) Published
Abstract [en]

Background:

There has been a change in psychiatric care from a hospital-oriented care system to an outpatient-centred system, which has underlined the importance of support alternatives.

Methods:

The sample was drawn from outpatients with schizophrenia at an outpatient clinic in 2001. We used structured interviews when interviewing outpatients, parents and staff. The interview with the patient included the patient’s needs, global function, clinical global impression and insight. Both parents and staff were interviewed about the patient’s needs.

Results:

The mean value of GAF was 56 ± 10, CGI 4 ± 1 and 89% of the patients had full insight into their illness. The patients rated the total score of the severity of needs at a mean of 7 ± 4, while the parents’ and staff’s rating was 9 ± 5. The needs ranking between patients and parents and patients and staff showed a correlation of rho = 0.65 (p < 0.01) and parents and staff rho =0.95 (p < 0.01). The parents rated more problems involving physical health and money than the patients.

Conclusion:

When planning mental health in the future, it is important to assess the views of the patients, the parents and the staff from a multiple perspective.

National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:liu:diva-23683 (URN)10.1007/s00127-004-0750-8 (DOI)3181 (Local ID)3181 (Archive number)3181 (OAI)
Available from: 2009-10-07 Created: 2009-10-07 Last updated: 2017-12-13
3. Quality of life and burden in parents of outpatients with schizophrenia
Open this publication in new window or tab >>Quality of life and burden in parents of outpatients with schizophrenia
2005 (English)In: Social Psychiatry and Psychiatric Epidemiology, ISSN 0933-7954, E-ISSN 1433-9285, Vol. 40, no 2, 133-138 p.Article in journal (Refereed) Published
Abstract [en]

Background

Since the late 1950s, several studies have reported the burden faced by families living with a mentally ill relative. These studies have pointed out the importance of a progressive mental health service, focusing not only on the treatment of the patients, but also on the needs of the relatives. The aims of the present study were to compare the quality of life of parents of outpatients with schizophrenia with a randomly selected reference group and the relation between quality of life and burden on the parents.

Subjects

The sample comprised all parents (n=38) of outpatients with schizophrenia at an outpatient clinic in 2001, where the patients had contact at least once a week with both parents and staff. The parents were compared with a reference group (n=698).

Methods

The self-rating scale Quality of Life Index (QLI) was used to assess quality of life in both groups. In the case of the parents, semistructured interviews were supplemented by the data collection to assess the degree of burden with the Burden Assessment Scale (BAS). The outpatients were also interviewed to assess their global function with the Global Assessment of Functioning scale (GAF) and the Clinical Global Impression scale (CGI).

Results

The parents were significantly less satisfied with their overall quality of life (p<0.05). There was a correlation between lower overall quality of life and higher perceived burden r=0.58 (p<0.01). There was also a correlation between lower values on the family subscale and social subscale within the QLI and higher subjective burden r=0.54 (p<0.01) and r=0.52 (p<0.01), respectively.

Conclusion

These results indicate that caregiving has an influence on the family situation and on the quality of life of parents. These findings suggest that the professions working with the parents must have an approach focusing not only on the care given to the ill daughter or son, but also on the parents’ situation.

National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:liu:diva-24418 (URN)10.1007/s00127-005-0853-x (DOI)6521 (Local ID)6521 (Archive number)6521 (OAI)
Available from: 2009-10-07 Created: 2009-10-07 Last updated: 2017-12-13
4. Between hope and worry: a phenomenological study of parents of outpatients with schizophrenia
Open this publication in new window or tab >>Between hope and worry: a phenomenological study of parents of outpatients with schizophrenia
(English)Manuscript (preprint) (Other academic)
Abstract [en]

Background: In recent decades, most of the care for the severely mentally ill has shifted from hospital care to care in the community. In the community, the families' responsibilities for care and support has increased. The objectives of the present study were to describe the experiences and strategies when being a parent of an outpatient with schizophrenia. Two researchers interviewed eight parents of outpatients with schizophrenia. A phenomenological perspective guided the study and the analysis was performed in accordance with the Empirical Phenomenological Psychological Method (EPP). Four themes created the meaniog of liviog with a mentally ill child. These themes were: emotions in parenthood, change in the families, interaction with others and adaptation to the illness

The results have been interpreted and discussed io the light of the first onset of the ilioess, loss and grief and the creation of meaning and hope.

Conclusion: these results suggest that atl the parents in the present study experienced a loss of their former child, underwent a grief process, needed to interact with others and used emotionally focused coping strategies.

National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:liu:diva-85070 (URN)
Available from: 2012-11-01 Created: 2012-11-01 Last updated: 2012-11-01

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