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Children's experiences about a structured assessment of health-related quality of life during a patient encounter
Jönköping University, School of Health and Welfare, The Jönköping Academy for Improvement of Health and Welfare. Jönköping University, School of Health and Welfare, HHJ. CHILD.
Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD. Jönköping University, School of Health and Welfare, The Jönköping Academy for Improvement of Health and Welfare.ORCID iD: 0000-0003-4599-155X
Jönköping University, School of Health and Welfare, The Jönköping Academy for Improvement of Health and Welfare. Jönköping University, School of Health and Welfare, HHJ. CHILD.
Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD.ORCID iD: 0000-0001-8596-6020
2016 (English)In: Child Care Health and Development, ISSN 0305-1862, E-ISSN 1365-2214, Vol. 42, no 3, 424-432 p.Article in journal (Refereed) Published
Abstract [en]

Background

It has been stated that care for children with chronic health conditions tends to focus on condition-specific issues rather than how these children experience their health and everyday life functioning.

Aim

The aim of this study was to explore children's experiences about a structured assessment of health-related quality of life applied during a patient encounter.

Methods

Prior to the start of the study, a clinical intervention based on the questionnaire DISABKIDS Chronic Generic Measure (DCGM-37) was performed. A qualitative explorative design was chosen, and 25 children between 10–17 years of age were interviewed after the consultation at four different paediatric outpatient clinics. Data were analysed according to qualitative content analysis.

Results

The results were twofold: children experienced that the assessment was providing them with insights about their health, which motivated them to make lifestyle changes. When outcomes were discussed and requested, the children felt encouraged.

Conclusions

The use of an assessment of health-related quality of life may promote insights about health and encourage children with chronic health conditions to discuss their outcomes with healthcare professionals.

Place, publisher, year, edition, pages
2016. Vol. 42, no 3, 424-432 p.
Keyword [en]
childrens' views; chronic (health) condition; qualitative; quality of life; research methods
National Category
Pediatrics
Identifiers
URN: urn:nbn:se:hj:diva-29951DOI: 10.1111/cch.12324PubMedID: 26888733ScopusID: 2-s2.0-84963812018OAI: oai:DiVA.org:hj-29951DiVA: diva2:929411
Available from: 2016-05-18 Created: 2016-05-18 Last updated: 2016-12-01Bibliographically approved
In thesis
1. Using health-related quality of life instruments for children with long-term conditions: On the basis of a national quality registry system
Open this publication in new window or tab >>Using health-related quality of life instruments for children with long-term conditions: On the basis of a national quality registry system
2016 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

Introduction: There has been a continuous development of new technologies in healthcare that are derived from national quality registries. However, this innovation needs to be translated into the workflow of healthcare delivery, to enable children with long-term conditions to get the best support possible to manage their health during everyday life. Since children living with long-term conditions experience different interference levels in their lives, healthcare professionals need to assess the impact of care on children’s day-to-day lives, as a complement to biomedical assessments.

Aim: The overall aim of this thesis was to explore and describe the use of instruments about health-related quality of life (HRQOL) in outpatient care for children with long-term conditions on the basis of a national quality registry system.

Methods: The research was conducted by using comparative, cross-sectional and explorative designs and data collection was performed by using different methods. The questionnaire DISABKIDS Chronic Generic Measure -37 was used as well as semi-structured interviews and video-recordings from consultations. Altogether, 156 children (8–18 years) and nine healthcare professionals participated in the studies. Children with Type 1 Diabetes (T1D) (n 131) answered the questionnaire DISABKIDS and children with rheumatic diseases, kidney diseases and T1D (n 25) were interviewed after their consultation at the outpatient clinic after the web-DISABKIDS had been used. In total, nine healthcare professionals used the HRQOL instrument as an assessment tool during the encounters which was video-recorded (n 21). Quantitative deductive content analysis was used to describe content in different HRQOL instruments. Statistical inference was used to analyse results from DISABKIDS and qualitative content analysis was used to analyse the interviews and video-recordings.

Results: The findings showed that based on a biopsychosocial perspective, both generic and disease-specific instruments should be used to gain a comprehensive evaluation of the child’s HRQOL. The DISABKIDS instrument is applicable when describing different aspects of health concerning children with T1D. When DISABKIDS was used in the encounters, children expressed positive experiences about sharing their results with the healthcare professional. It was discovered that different approaches led to different outcomes for the child when the healthcare professionals were using DISABKIDS during the encounter. When an instructing approach is used, the child’s ability to learn more about their health and how to improve their health is limited. When an inviting or engaging approach is used by the professional, the child may become more involved during the conversations.

Conclusions: It could be argued that instruments of HRQOL could be used as a complement to biomedical variables, to promote a biopsychosocial perspective on the child’s health. According to the children in this thesis, feedback on their results after answering to web-DISABKIDS is important, which implies that healthcare professionals need to prioritize time for discussions about results from HRQOL instruments in the encounters. If healthcare professionals involve the child in the discussion of the results of the HRQOL, misinterpreted answers could be corrected during the conversation. Concurrently, this claims that healthcare professionals invite and engage the child.

Place, publisher, year, edition, pages
Jönköping: Jönköping University, School of Health and Welfare, 2016. 101 p.
Series
Hälsohögskolans avhandlingsserie, ISSN 1654-3602 ; 77
Keyword
outpatient setting; patient perspectives; patient reported outcomes; biopsychosocial perspective; self-reports; child involvement; International Classification of Functioning Disability and Health version for Children and Youth
National Category
Pediatrics
Identifiers
urn:nbn:se:hj:diva-34144 (URN)978-91-85835-76-8 (ISBN)
Public defence
2017-01-20, Forum Humanum, School of Health and Welfare, Jönköping, 13:00 (Swedish)
Opponent
Supervisors
Available from: 2016-12-15 Created: 2016-12-01 Last updated: 2016-12-01Bibliographically approved

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