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

Abstract

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: Socioeconomic 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 wellbeing 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.

Parenting an adolescent with complex regional pain syndrome: A dyadic qualitative investigation of resilience

“…Additionally, it was guided by their perception of what constitutes as 'good' and socially desirable parenting behaviour which conveys a favourable image of positive parental behaviours including parental warmth, support, and adaptive coping in response to adversities (Bornstein et al, 2014). Parenting an adolescent with chronic pain was often very distressing as parents typically felt helpless due to not being able to alleviate their child's pain, which was a violation of the parenting role (Skarstein et al, 2020). Such parental distress is a normal response to a challenging situation, highlighting the importance of future pain research focussing on normalization of both adolescent and parental responses to pain and associated disability (Eccleston, 2011).…”

“…Chronic pain exists within a social context (Williams & Craig, 2016), with the impact of adolescent chronic pain extending beyond the individual to family and peers (Forgeron et al, 2010;Jaaniste, Phupps, Lang, & Champion, 2013;Jordan, Eccleston, & Osborn, 2007). Individuals who parent an adolescent with chronic pain report low levels of healthrelated quality of life (Mano, Khan, Ladwig, & Weisman, 2011), restrictions in their social life and feelings of helplessness (Skarstein, Bergem, & Helseth, 2020), sleep disruption, (Meltzer & Moore, 2008) and elevated levels of stress, anxiety, and depression (Eccleston, Crombez, Scotford, Clinch, & Connell, 2004). Additionally, parents report feelings of helplessness regarding their inability to relieve their child's pain (Jordan et al, 2007), fear, lack of control, and believe their parenting skills are impaired (Baert et al, 2020).…”

Stress, Pain, and Work Affiliation Are Strongly Associated With Health-related Quality of Life in Parents of 14–15-year-old Adolescents

“…Notably, a high percentage of the parents in this study (41%) reported family pain. Earlier research has shown that persistent pain in parents may in uence pain attitudes and coping in adolescents and that persistent pain in parents is associated with pain in adolescents [10,51].…”

“…Parents can experience pain and high levels of stress, which may affect their HRQOL and ability as caregivers [10,11]. Previous studies have shown that pain in uences HRQOL negatively, especially in women [4,12], and that parents' pain and pain coping patterns may be adopted by their children and thereby in uence HRQOL of both parents and their children [10,13]. In parents of preschool children in the general population, low parental HRQOL is predicted by mental health problems, and families with at least one individual experiencing problems and in need of assistance, such as psychotherapy and parenting programmes, rated their HRQOL lower than families without these problems [14].…”

“…Parents can experience pain and high levels of stress, which may affect their HRQOL and ability as caregivers [10,11]. Previous studies have shown that pain in uences HRQOL negatively, especially in women [4,12], and that parents' pain and pain coping patterns may be adopted by their children and thereby in uence HRQOL of both parents and their children [10,13].…”