Understanding the impacts of chronic pain on autistic adolescents and effective pain management: a reflexive thematic analysis adolescent-maternal dyadic study.

OBJECTIVE: Sensory elements are core features in chronic pain and autism, yet knowledge of the pain experience in autistic adolescents is limited. Little is known regarding how autistic adolescents experience chronic pain, manage their pain and perceive psychological treatment for their chronic pain. METHODS: Ten autistic adolescents (6 female, 3 male, and 1 self-identified as agender) with chronic pain and their mothers (n = 10) participated in semistructured interviews concerning their perceptions of living with chronic pain. Participants were recruited from U.K. pain management services. According to preference, interviews were conducted individually (n = 10) or dyadically (n = 10 participants across 5 dyads). Data were analyzed using inductive reflexive thematic analysis. RESULTS: Two themes were generated. Theme 1, "overstimulated and striving for control" described how adolescents' experience of heightened sensitivity enhanced adolescents' levels of anxiety and subsequent pain, illustrating a reciprocal relationship between anxiety, pain, and sensory elements. Theme 2, "not everyone fits the mold" captured how autistic adolescents positioned themselves as distinct from others due to the unique nature of being autistic and living with pain. This sense of difference negatively impacted adolescents' ability to engage with and benefit from the standard treatment for chronic pain. CONCLUSIONS: Findings suggest that autistic adolescents living with pain experience pain and face barriers to effective pain treatment. Our results identify the need for educational resources to facilitate clinicians to better understand the experience of autistic adolescents living with pain. In turn, such understanding may improve treatment and outcomes in this population.

A usability and feasibility study of a computerized version of the Bath Adolescent Pain Questionnaire: the BAPQ-C.

BACKGROUND: Pain is a common experience in adolescence, with up to 44% of adolescents reporting chronic pain. For a significant minority, severe pain becomes an ongoing disabling problem. Treatment of adolescent chronic pain aims to reduce the impact of pain on adolescents' lives. Efficient, accurate assessment of the impact of pain is essential to treatment. The 'Bath Adolescent Pain Questionnaire' (BAPQ) is a psychometrically robust multidimensional self-report measure of adolescent functioning. Whilst widely used, the paper-based format of the BAPQ can present completion difficulties for adolescents experiencing chronic pain. To increase the accessibility and clinical utility of the BAPQ, an electronic version of the measure is needed. This study assesses the usability and feasibility of a computerized version of this measure (BAPQ-C) in an adolescent chronic pain population. METHODS: Fourteen adolescents (13 females; 13-16 years) were recruited from a hospital-based residential pain management programme. Participants completed a qualitative 'thinking aloud task' whilst completing the BAPQ-C. and, an acceptability questionnaire regarding the BAPQ-C. Data were analysed using thematic analysis, a widely used qualitative method of data analysis . RESULTS: Two themes labelled 'engagement and technological appeal' and 'accessibility and independence' were generated. Themes revealed numerous factors contributing to participants' preference for the BAPQ-C compared with the paper version of the BAPQ. Participants reported that the BAPQ-C was 'quicker' and 'easier' to complete than the BAPQ. Functional aspects of the BAPQ-C which included use of a touch screen rather than a pen and paper, font colours/styles, the zoom function and the spellchecker, provided participants with improved access. This subsequently increased participants' independence and confidence when completing the measure. CONCLUSION: The BAPQ-C is a feasible multidimensional tool for the assessment of functioning in adolescents who experience chronic pain. It was well-received by participants who were able to complete the measure more quickly, independently and confidently than the paper-based BAPQ. Increased speed, ease and accuracy of completion make the BAPQ-C an ideal tool for use in busy clinical and research settings. Findings highlight the potential benefits of adopting the BAPQ-C when assessing the impact of chronic pain on adolescents in clinic and home-based settings.

A developmental arrest? Interruption and identity in adolescent chronic pain.

INTRODUCTION: Although the pediatric pain literature has explored the role of developmental factors in young children's acute pain, relatively less is known about specific developmental challenges in adolescents with chronic pain. OBJECTIVES: To meet this knowledge gap, this study sought to adopt an idiographic phenomenological approach to examine how adolescents make sense of their own development in the context of living with chronic pain. METHODS: Semistructured interviews were conducted with ten adolescents (12-17 years; 7 females) recruited from a tertiary care pain treatment programme. Interview data were transcribed verbatim and analysed using Interpretative Phenomenological Analysis. RESULTS: Study findings identified 2 themes: "An externally imposed lens on identity" and "Paradoxes of developmental progress." The first theme highlighted an understanding of how adolescent identity is perceived. Some adolescents perceived identity as distinct from pain, whereas others perceived identity as part of their chronic pain condition. This theme also detailed how identity was negotiated by adolescents and others through engagement with valued activities. The second theme represented an understanding of how chronic pain disrupts and alters adolescent developmental trajectories at an individual level, suggesting possibilities of enhanced and delayed trajectories. Enhanced trajectories were associated with increased management of emotionally difficult situations and resulted in mastery of complex interpersonal skills. CONCLUSION: Findings provided a nuanced understanding of developmental progress in the context of adolescent chronic pain and suggested challenges with drawing normative comparisons. Future research could extend findings by adopting a longitudinal approach to studying adolescent development and eliciting accounts from broader social groups.

Acceptance and values-based treatment of adolescents with chronic pain: outcomes and their relationship to acceptance.

OBJECTIVE: Psychological treatments for pediatric chronic pain are moderately effective. However, there have been few studies of the psychological processes associated with treatment response. This study examines the effects of Acceptance and Commitment Therapy (ACT) treatment on a severely disabled group of adolescents with chronic pain, examining relationships between outcome and acceptance. METHODS: 98 adolescents with pain, mean age 15.6 years, underwent an uncontrolled trial of 3-week residential ACT treatment. RESULTS: Adolescents improved in self-reported functioning and objective physical performance at 3-month follow-up. They were less anxious and catastrophic, attended school more regularly, and used health care facilities less often. Most positive treatment outcomes were associated with improvements in acceptance. CONCLUSIONS: An intensive ACT-based pain rehabilitation course was an effective treatment for disabled adolescents with chronic pain. Its results were theoretically consistent--improvements were associated with changes in acceptance and were achieved without pain control or cognitive restructuring techniques.

The Bath Adolescent Pain--Parental Impact Questionnaire (BAP-PIQ): development and preliminary psychometric evaluation of an instrument to assess the impact of parenting an adolescent with chronic pain.

When an adolescent has chronic pain many aspects of a parent's life can be affected, including their emotional and social functioning. The assessment of this multidimensional parental impact is an essential, yet often neglected, clinical task. This study reports on the development and psychometric evaluation of the Bath Adolescent Pain--Parental Impact Questionnaire (BAP-PIQ), an assessment tool comprising multiple scales thought to be relevant for better understanding changes in functioning and behavior associated with parenting an adolescent with chronic pain. A sample of 194 parents of adolescents with chronic pain, recruited from three UK clinics, completed the 94 item draft inventory. Frequency and item correlation analyses resulted in a final inventory of 62 items. Internal consistency of all eight scales was established based on Cronbach's alpha. Convergent validity was undertaken by comparison of individual scales with existing validated measures of parental stress, mood, parenting behavior, marital adjustment, and general functioning. The temporal reliability of each scale was established using a sub-sample of 46 participants over a 14-day period. Psychometric evaluation suggests that the inventory yields a reliable and valid assessment of the multiple impacts of parenting an adolescent with chronic pain. The BAP-PIQ may offer a comprehensive assessment of these impacts in both a research and a clinical setting. Further study of the validity of BAP-PIQ scales and their ability to detect clinically meaningful change would be of use. Additional data from samples comprising fathers of adolescents with chronic pain and parents of adolescents with non-musculoskeletal pain would be of benefit.

The Bath Adolescent Pain Questionnaire (BAPQ): development and preliminary psychometric evaluation of an instrument to assess the impact of chronic pain on adolescents.

Chronic pain causes significant problems in the lives of many adolescents, considerably affecting their physical, psychological and social functioning. The assessment of the multidimensional impact of chronic pain is an essential clinical task. This study reports on the development and psychometric evaluation of the Bath Adolescent Pain Questionnaire (BAPQ); an assessment tool designed specifically for use with adolescents who experience chronic pain. A sample of 222 adolescents (11-18 years) experiencing chronic pain completed the 109-item draft inventory. Participants were recruited from two different UK clinics. All participants responded to items using a 5-point frequency scale. Psychometric evaluation of the data resulted in a reduced inventory length of 61 items. Internal consistency of all seven questionnaire subscales was established using Cronbach's alpha. Comparative validity was undertaken by comparison of all individual subscales with existing validated measures (SCAS, CDI-S, FDI, Brief FAM. PCS and CASAFS). The temporal reliability of each inventory subscale was established using a sub-sample of 30 adolescent participants over a 17-day period. Psychometric evaluation of the data suggests the inventory yields both a reliable and valid assessment of the impact of chronic pain on the lives of adolescents. The BAPQ may offer a comprehensive way to assess the widespread deleterious impact of adolescent chronic pain in both a research and clinical setting. Further investigation is needed on the predictive validity of the subscales. Additional data from samples of patients with diagnoses that are not musculoskeletal in origin would be of great assistance.

Adolescent chronic pain: patterns and predictors of emotional distress in adolescents with chronic pain and their parents.

Adolescents with chronic pain also report severe disability and emotional distress. A clinical sample of 80 adolescents and accompanying parents were investigated to first measure the extent of distress, and second to investigate the relationships between adolescent distress, parental distress and adolescent coping. Measures of pain intensity, anxiety, depression, disability and coping were obtained from adolescents. Parents completed measures including their own anxiety, depression and parenting stress. Overall, adolescents reported high levels of disability, depression and anxiety, and parents reported high levels of depression, anxiety and parenting stress. Multiple regression analyses revealed that the best predictors of adolescent emotional distress were the extent to which the adolescents catastrophize and seek social support to cope with the pain. There were no clear predictors of parental anxiety or depression but the specific pattern of parenting stress was best predicted by the younger age of the adolescent, the greater the chronicity of the problem, and the greater the extent of adolescent depression. These findings suggest that emotional coping is a critical variable in the distress associated with adolescent chronic pain. It is argued that adolescent emotional coping may best be understood within a relational context of seeking emotional support.