How do mothers of adolescents with chronic pain experience their own quality of life?

BACKGROUND: Chronic pain is a major health problem globally with severe personal and economic consequences. Maternal chronic pain is associated with their children's pain. Family pain models and shared environmental aspects are important in the understanding of chronic pain among adolescents. Pain in itself impairs the quality of life (QoL). However, satisfaction in the aspects of health and functioning, social and economic, psychological, and family life will together constitute a person's subjective experience of QoL. On this background, we considered it important to gain an understanding of the QoL of mothers who have children with chronic pain. We aimed to gain a broader understanding of the QoL in mothers of children with chronic pain and to investigate how they managed their children's pain. METHODS: This study had a qualitative design with face-to-face, in-depth interviews. The concept of QoL was used as a framework for developing a thematic, semi-structured interview guide. Eight mothers of adolescents with chronic pain (two boys and six girls) participated with signed consent. RESULTS: Socio-economic difficulties and health complaints were common. Psychological stress, because of their children's physical pain and other stressful experiences such as bullying, dominated everyday life. Lack of predictability and of responsible involvement from the fathers' side increased the mothers' burden considerably. Experiencing not being helped by others such as health professionals resulted in feelings of helplessness. CONCLUSIONS: These mothers had reduced QoL caused by their own health problems, concern for the child's well-being and lack of social support, which affected the child's upbringing and pain management. By improving these mothers' QoL, family-based shared pain management strategies could help in health promotion, leading to a more positive QoL circle. Elements of family and cognitive therapy could be applied when supporting the mothers and children and improving their QoL.

Health-related quality of life among 13-14 year old adolescents with overweight-a mixed methods approach.

BACKGROUND: Overweight and obesity are public concerns with risk of adverse health outcomes. Health-related quality of life (HRQoL) is lower in adolescents than children in general. An increase in body mass index (BMI) is associated with a decrease in HRQoL. The purpose of this study was to measure and explore the HRQoL among adolescents with overweight or obesity who had participated in an intervention study, Young & Active, with the aim of increasing physical activity (PA), reducing BMI and promoting HRQoL. METHODS: Mixed methods, with a convergent design, were used to investigate how different methodological approaches could expand our understanding of the adolescents' HRQoL. Quantitative post-intervention data on HRQoL were collected among the 84 intervention participants, aged 13-14 years, using the KIDSCREEN 52 questionnaire. The data were compared with a Norwegian reference population of 244 individuals, and analysed using a non-parametric Mann-Whitney test. Qualitative semi-structured interviews were conducted with 21 adolescents from the intervention. A directed approach to content analysis was adopted, using the ten sub-scales from KIDSCREEN 52. RESULTS: HRQoL in the intervention sample was significantly reduced on the sub-scale of physical well-being compared to the reference population. The reference population scored significantly lower than the intervention sample on the sub-scale of parent relation and home life. No significant differences were found on the other sub-scales. The qualitative data supported the quantitative findings on the sub-scale of physical well-being, but showed that perceptions of fitness, energy level or health could vary. Regarding parent relations, the interviewees extended this to include relationships to other family members as equally important. Most of the interviewees expressed a negative view of their bodies, but not their clothing or accessories. This may explain why no statistically significant differences were found on these aspects in the results from the KIDSCREEN questionnaire. CONCLUSION: The use of the KIDSCREEN 52 instrument gave important indications about the adolescents' HRQoL and need for additional follow up. The qualitative data provided an in-depth understanding that nuanced the findings and widened our knowledge of the adolescents HRQoL. Combining methods enabled a comprehensive approach to research on HRQoL.

A systematic review of quality of life research in medicine and health sciences.

PURPOSE: Quality of life (QOL) is an important concept in the field of health and medicine. QOL is a complex concept that is interpreted and defined differently within and between disciplines, including the fields of health and medicine. The aims of this study were to systematically review the literature on QOL in medicine and health research and to describe the country of origin, target groups, instruments, design, and conceptual issues. METHODS: A systematic review was conducted to identify research studies on QOL and health-related quality of life (HRQOL). The databases Scopus, which includes Embase and MEDLINE, CINAHL, and PsycINFO were searched for articles published during one random week in November 2016. The ten predefined criteria of Gill and Feinstein were used to evaluate the conceptual and methodological rigor. RESULTS: QOL research is international and involves a variety of target groups, research designs, and QOL measures. According to the criteria of Gill and Feinstein, the results show that only 13% provided a definition of QOL, 6% distinguished QOL from HRQOL. The most frequently fulfilled criteria were: (i) stating the domains of QOL to be measured; (ii) giving a reason for choosing the instruments used; and (iii) aggregating the results from multiple items. CONCLUSION: QOL is an important endpoint in medical and health research, and QOL research involves a variety of patient groups and different research designs. Based on the current evaluation of the methodological and conceptual clarity of QOL research, we conclude that the majority QOL studies in health and medicine have conceptual and methodological challenges.