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Juvenile chronic physical illness in Northern Russia: Studies on mental health, health-related quality of life, and family functioning
Umeå University, Faculty of Medicine, Department of Clinical Sciences, Child and Adolescent Psychiatry.
2014 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

Background Chronic physical illness (CPI) is a prolonged, rarely cured condition, which often causes impairment of activities of a child’s or adolescent’s daily living. This thesis encompasses three cohorts of patients with CPI – diagnosed with diabetes, asthma or epilepsy. Psychological disturbances and difficulties experienced by young patients with CPI are common, and changes in the family environment are inevitable. Hence, from a health care perspective, three cohorts of CPI can give a frame of reference to guide our understanding on the psychological health of adolescents with CPI, and the disease impact on their life; to determine target groups for psychological interventions, and to identify important directions for health care development.

Objectives The overall aim of the study was to assess the psychological well-being of adolescents with CPI in Northern Russia, as well as to identify factors of potential risk or protective significance for adolescents’ well-being.

Methods The questionnaires covering different aspects of psychological well-being as behavior-emotional problems, depressive symptoms, self-esteem, and health-related quality of life (HRQoL) as well as family functioning were answered by the adolescents with CPI and their mothers, including the Child Behavior Check-List (CBCL) and Youth Self-Report (YSR); Beck Depression Inventory (BDI); The Rosenberg Self-Esteem Scale; I think I am; Quality of Life in Epilepsy Inventory for Adolescents (QOLIE-AD-48); Diabetes Quality of Life Questionnaire for Youths (DQOLY); Pediatric Asthma Quality of Life Questionnaire (PAQLQ); Self-report Family Inventory (SFI); and Socio-Economic Status (SES) questions. Disease related clinical information was withdrawn from the pediatric outpatient clinic. The sample consisted of 148 adolescents with CPI identified from Arkhangelsk pediatric outpatient clinic records and their mothers. Comparative data were obtained from a group of 301 schoolchildren and their mothers.

Results Results in Paper I showed certain differences in mental health of adolescents with CPI compared to healthy counterparts indorsed by mother’s reports alone, while self-reports by adolescents with CPI didn’t show any discrepancy in the level of behavior/emotional problems and depression compared to healthy peers. Most pronounced symptoms were found in adolescents with asthma and epilepsy associated with disease severity and gender. In the results of Paper II there were no significant differences found in self/mother reported family functioning of the total group with CPI versus controls. The perception of family functioning differed between the CPI groups and was associated to certain disease-related and non-disease factors. Paper III showed that adolescents with diabetes and asthma maintain positive self-esteem similar to or even higher than that of their healthy counterparts. Adolescents with epilepsy reported lower self-esteem compared to other CPI groups or controls. A diversity of factors contributed to self-esteem variation within the CPI groups. Paper IV provides evidence that adolescents with CPI maintained relatively moderate to high levels of HRQoL. The domains affecting HRQoL were related to both disease-specific (severity) and non-disease factors (gender and SES).

Conclusions In the scope of the present thesis we assessed and described psychological well-being and family functioning of adolescents with chronic illnesses. Our results demonstrate generally low levels of behavior-emotional problems, depressive symptoms, and relatively high self-esteem, positive health-related quality of life, and successful family functioning in adolescent with CPI in Northern Russia. However, we conclude that there is a risk of mental health problems, particularly of internalizing nature, in adolescents with asthma and epilepsy. The significant risk factors associated with psychological well-being mediated by family functioning in CPI groups were single-parent household, child age, disease severity, child gender, family SES, and changes in the family life. High family competence and successful family functioning are indisputable protective factors for psychological well-being in adolescents with CPI.

Place, publisher, year, edition, pages
Umeå: Umeå Universitet , 2014. , 67 p.
Series
Umeå University medical dissertations, ISSN 0346-6612 ; 1628
Keyword [en]
chronic physical illness, adolescence, mental health, behavior/emotional problems, depression, self-esteem, health-related quality of life, family functioning
National Category
Psychiatry
Research subject
Child and Youth Psychiatry
Identifiers
URN: urn:nbn:se:umu:diva-86462ISBN: 978-91-7601-001-3 (print)OAI: oai:DiVA.org:umu-86462DiVA: diva2:699293
Public defence
2014-03-21, Föreläsningssal A, Psykiatriska kliniken, byggnad 23, Norrlands universitetssjukhus, Umeå, 09:00 (English)
Opponent
Supervisors
Available from: 2014-02-28 Created: 2014-02-27 Last updated: 2014-03-14Bibliographically approved
List of papers
1. Mental health in adolescents with chronic physical illness versus controls in Northern Russia.
Open this publication in new window or tab >>Mental health in adolescents with chronic physical illness versus controls in Northern Russia.
2007 (English)In: Acta Paediatrica, ISSN 0803-5253, E-ISSN 1651-2227, Vol. 96, no 6, 890-896 p.Article in journal (Refereed) Published
Abstract [en]

AIM: To study the behaviour/emotional problems and depression in adolescents with and without physical illnesses; to compare the same psychological parameters in adolescents with different disorders.

METHODS: The sample consisted of 148 adolescents aged 13-16 years with one of the following physical chronic conditions: diabetes (n = 55), asthma (n = 59), or epilepsy (n = 59). Comparative data were obtained from a group of 301 schoolchildren. Test batteries (Child Behaviour Check-List, Youth Self Report, Beck Depression Inventory, socio-economic status questions) were individually completed by adolescents and their mothers.

RESULTS: Overall adolescents with physical illness had more behaviour/emotional problems and were more depressed compared to controls although results varied according to the informants and the disease severity. Two risk groups were revealed: girls with asthma and boys with epilepsy.

CONCLUSION: Our results suggest that mental health in adolescents with chronic physical illnesses is poorer than in controls and their mental health state is very much associated with the disease severity. The findings of the study can help to develop disease targeted and comprehensive interventions in outpatient clinics of Northern Russia in order to reduce behaviour and mood disorders in adolescents with chronic physical illnesses and therefore to smooth the transition through their teenage years.

National Category
Psychiatry
Identifiers
urn:nbn:se:umu:diva-22942 (URN)10.1111/j.1651-2227.2007.00277.x (DOI)17537019 (PubMedID)
Available from: 2009-05-20 Created: 2009-05-20 Last updated: 2017-12-13Bibliographically approved
2. Family functioning and juvenile chronic physical illness in Northern Russia.
Open this publication in new window or tab >>Family functioning and juvenile chronic physical illness in Northern Russia.
2009 (English)In: Acta Paediatrica, ISSN 0803-5253, E-ISSN 1651-2227, Vol. 98, no 2, 355-360 p.Article in journal (Refereed) Published
Abstract [en]

AIM: To study family functioning of adolescents with chronic physical illnesses and factors related to it. The following research questions were addressed: (i) if families with adolescents with chronic physical illnesses were at increased risk for problematic functioning compared to the healthy control families; (ii) was disease severity associated with family dysfunction; and (iii) did family functioning level differ in three disease groups (diabetes, asthma and epilepsy).

METHODS: Self-report family inventory and socio-economic status questions were individually completed by 148 adolescents with physical illnesses aged 13-16 years and their mothers; medical data were obtained from the files at the outpatient clinics. Comparative data were collected from a group of 301 schoolchildren.

RESULTS: Overall there were no differences found in functioning of families with physically ill adolescents compared to controls. Family functioning was significantly associated with the number of disease-specific (disease severity and duration) and non-disease (socio-economic status and family type) factors.

CONCLUSION: In our study, families with physically ill adolescents showed considerable resilience and tolerance to the changes in habitual functioning of the family unit. While greater disease severity, longer disease duration, as well as single-parent household were the factors that contributed to the family dysfunction.

National Category
Psychiatry
Identifiers
urn:nbn:se:umu:diva-22944 (URN)10.1111/j.1651-2227.2008.01028.x (DOI)19006528 (PubMedID)
Available from: 2009-05-20 Created: 2009-05-20 Last updated: 2017-12-13Bibliographically approved
3. Self-esteem in adolescents with chronic physical illness vs. controls in Northern Russia
Open this publication in new window or tab >>Self-esteem in adolescents with chronic physical illness vs. controls in Northern Russia
2014 (English)In: International Journal of Adolescent Medicine and Health, ISSN 0334-0139, E-ISSN 2191-0278, Vol. 26, no 2, 275-281 p.Article in journal (Refereed) Published
Abstract [en]

Objective: This work aims to study self-esteem in adolescents with diabetes, asthma and epilepsy; compare the results with those of the representative sample of healthy adolescents; and evaluate the predictive value of certain demographic, family-related, and disease-related factors on self-esteem.

Methods: A total of 148 chronically ill adolescents and 301 matched healthy counterparts completed the Rosenberg Self Esteem Scale and the "I think I am" questionnaire. Adolescents' parents answered socio-economic status questions. Disease severity was evaluated by doctors of the outpatient clinic.

Results: Comparison analysis of the three disease groups revealed highest self-esteem perception in adolescents with diabetes, and lowest in adolescents with epilepsy. Unexpectedly, adolescents with diabetes scored higher than their healthy counterparts. There were no significant differences between the reports of adolescents with asthma and controls. In the epilepsy group, self-esteem was predicted mostly by disease severity and socio-economic status in diabetes and asthma groups, as well as by age and gender.

Conclusion: The maintenance of positive self-esteem in adolescents with diabetes and asthma is a very reassuring finding. The other results of our study provide support for recognizing adolescents with epilepsy as a vulnerable group in the society. A multidisciplinary professional approach targeted on adolescents with epilepsy is needed, with focus on factors connected with maturation and gender issues.

National Category
Psychiatry
Identifiers
urn:nbn:se:umu:diva-86459 (URN)10.1515/ijamh-2013-0507 (DOI)23843571 (PubMedID)
Available from: 2014-02-27 Created: 2014-02-27 Last updated: 2017-12-05Bibliographically approved
4. Health-related quality of life in adolescents with chronic physical illness in northern Russia: a cross-sectional study.
Open this publication in new window or tab >>Health-related quality of life in adolescents with chronic physical illness in northern Russia: a cross-sectional study.
2014 (English)In: Health and Quality of Life Outcomes, ISSN 1477-7525, E-ISSN 1477-7525, Vol. 12, no 1, 12- p.Article in journal (Refereed) Published
Abstract [en]

BACKGROUND: Health related quality of life (HRQoL) is an important subjectively evaluated outcome of adolescents physical, mental, and social functioning. It gives us the possibility to assess the disease impact on life of adolescents, and to sort out target groups of adolescents for future psychological interventions. The objective of this cross-sectional survey was to study HRQoL in 173 adolescents with chronic physical illness (CPI - diabetes, asthma, and epilepsy), and to find HRQoL predictors in each disease group.

METHODS: Disease-specific questionnaires were completed by each adolescent recruited from the local outpatient clinic; mothers answered the questions on socioeconomic status (SES); and the patients' clinicians evaluated the severity of the disease.

RESULTS: A high proportion of adolescents in each disease specific sample reported moderate to high levels of HRQoL. Gender was the most prominent predictor of HRQoL in all three studied groups, while disease severity predicted HRQoL in the diabetic group and to some extent in the asthma group.

CONCLUSIONS: Our results provide evidence that adolescents with diabetes, asthma, and epilepsy in northern Russia maintain relatively moderate to high levels of HRQoL. The domains affecting HRQoL were related to both disease-specific (severity) and non-disease factors (gender and SES). Our study suggests that future psychosocial interventions should focus on aspects of CPI impacting adolescents in gendered ways, furthermore taking into account disease specific factors.

Keyword
Adolescents, Chronic physical illness, Disease severity, Gender, Health-related quality of life
National Category
Psychiatry
Identifiers
urn:nbn:se:umu:diva-86460 (URN)10.1186/1477-7525-12-12 (DOI)000330281800001 ()24460738 (PubMedID)
Available from: 2014-02-27 Created: 2014-02-27 Last updated: 2017-12-05Bibliographically approved

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