Quality of Life in Youth With Chronic Pain

Abstract

Objectives: Pediatric chronic pain has often been examined from a risk perspective, and relatively less is known about the individual and family-level resilience factors that help youth with chronic pain maintain their quality of life. This cross-sectional study: a) examined the relations among purported youth and parent resilience (youth pain acceptance and pain selfefficacy, parent psychological flexibility) and risk (youth pain intensity, parent protectiveness) factors with youth quality of life, and b) tested exploratory statistical mechanisms that may explain relations between parent and youth variables. Methods: Participants included 122 youth (10 to 17 years; M=14.26, SD=2.19) seen in an interdisciplinary pediatric chronic pain program and a parent. Youth completed measures of their average pain, quality of life, pain acceptance, and pain self-efficacy. Parents completed measures of their pain-related psychological flexibility and behavioral responses to pain (i.e., protectiveness, distraction, monitoring, minimizing).Results: Youth pain acceptance, pain self-efficacy, and parent psychological flexibility were highly positively correlated with each other, and with overall youth quality of life. Evidence for a buffering effect of pain acceptance and pain self-efficacy on the association between pain intensity and quality of life was not found. Protectiveness was found to be a significant mediator of the relation between parental psychological flexibility and youth quality of life. Discussion:The results are discussed in the context of the resilience-risk framework and current understandings of the role of parental factors for pediatric chronic pain.

Impacts of paediatric chronic pain on parents: A qualitative study

“…These results align with research focused on beneficial, adaptive responses to challenging or adverse situation, such as personal growth (Khu et al, 2019), increased resilience (Cousins, Cohen, & Venable, 2015;Khu et al, 2019) and benefit finding (Noel, Beals-Erickson, et al, 2016). Furthermore, recent studies have explored the role of optimism (Cousins, Cohen, & Venable, 2015;Cousins, Kalapurakkel, et al, 2015), pain acceptance and self-efficacy (Lee et al, 2020), and parental psychological flexibility (Lee et al, 2020) have differed from at other times (Neville et al, 2022). For example, during lockdowns, parents may have had less access to their social support networks and may have been less able to access certain supports when pain clinic appointments were conducted via telehealth rather than in person.…”

“…These results align with research focused on beneficial, adaptive responses to challenging or adverse situation, such as personal growth (Khu et al, 2019), increased resilience (Cousins, Cohen, & Venable, 2015; Khu et al, 2019) and benefit finding (Noel, Beals‐Erickson, et al, 2016). Furthermore, recent studies have explored the role of optimism (Cousins, Cohen, & Venable, 2015; Cousins, Kalapurakkel, et al, 2015), pain acceptance and self‐efficacy (Lee et al, 2020), and parental psychological flexibility (Lee et al, 2020) in modulating the outcome of paediatric chronic pain in the family. Considering the highly individualized experience of paediatric chronic pain, and the varying degrees of resilience exhibited by families, further research into resilience and risk mechanisms underlying these differences is warranted, potentially leading to the development of clinical interventions promoting resilience and positive growth responses.…”

“…There is limited evidence regarding the efficacy of psychological therapies on various outcome domains of parental functioning, such as psychological functioning, leisure functioning and physical functioning (Eccleston et al, 2015;Lee et al, 2021). Longitudinal assessments of targeted There is increasing research on the influence of parental resilience and risk factors on the child's paediatric chronic pain experience (Cousins, Cohen, & Venable, 2015;Cousins, Kalapurakkel, et al, 2015;Lee et al, 2020); however, there is little evidence on the impact of these factors on parental outcomes. Additionally, there are likely to be intrinsic and extrinsic factors influencing a parent's tendency to exhibit positive, adaptive behaviours in response to their child's chronic pain, as the interview responses regarding the positive impacts of the paediatric chronic pain were highly variable.…”

“…Despite the adverse impacts that paediatric chronic pain can inflict on caregivers, the experience of caring for a child with chronic pain also has the potential to instigate positive changes. Previous literature has explored possible transformative processes associated with the paediatric chronic pain experience, such as post‐traumatic growth (Khu et al, 2019), benefit finding (Noel, Beals‐Erickson, et al, 2016), optimism (Cousins, Cohen, & Venable, 2015) and psychological flexibility (Lee et al, 2020), with such parental resilience factors potentially also having beneficial effects on the child's pain‐related functioning and recovery (Cousins, Kalapurakkel, et al, 2015; Khu et al, 2019). To date, positive impacts associated with paediatric chronic pain on caregivers have not been well studied and warrant further research.…”

A Parent-Targeted Group Intervention for Pediatric Pain Delivered In-Person or Virtually

“…9 This response style is characterized by increased permission for the youth to avoid activities when experiencing pain and is conceptualized as a parental 'risk' factor that has been associated with greater pain and functional disability, and lower quality of life. 10,11 Parent protectiveness has also been found to partially mediate the relation between parent distress and youth functional disability. 12 Therefore, parents who experience distress related to their child's pain appear to be more likely to respond in protective ways, suggesting that targeting both parent distress and behavioral change could help the parents to encourage and maintain their youth's functioning.…”