Living with pain: the experience of children and adolescents in palliative care

A qualitative study was conducted with semi-structured interviews with the aim of understanding the experience of children and adolescents under palliative care when managing pain daily and how they describe the intensity, quality and location of pain. We used Piaget’s theory of cognitive development as a theoretical framework and oral history as a methodological framework. We found four themes: describing pain; seeking a life closer to normality, despite pain and disease; using a variety of alternatives for pain control; and living with damaged physical appearance. Although pain is a limiting factor in the lives of children and adolescents, we found that they faced their daily pain and still had a life beyond pain and illness. In addition, we highlight the relevance of nurses’ understanding that effective management of pain in children is essential for a normal life and less suffering

Sensory modulation: An important piece of the disability puzzle for adolescents with persistent pain.

OBJECTIVES: Sensory modulation patterns contribute to altered pain perception and disengagement in activities; atypical sensory modulation patterns have been associated with higher pain sensitivity, catastrophizing, and reduced function. Objectives of this study were to ascertain whether: adolescents with persistent pain had atypical sensory modulation patterns, atypical sensory modulation was associated with reduced functioning and higher pain, and pain catastrophizing mediated the relationship between sensory modulation and functional disability. METHODS: Adolescents (N=70, Females=63, Males=7) attending tertiary level interdisciplinary team assessment for persistent pain completed sensory modulation (Adolescent/Adult Sensory Profile), pain catastrophizing (Bath Adolescent Pain Questionnaire), pain intensity, functional disability (Functional Disability Index), and quality of life (Pediatric Quality of Life (QOL) Scales) questionnaires. RESULTS: Adolescents with persistent pain had atypical patterns of sensory modulation compared to normative data. Sensory modulation patterns were not associated with pain intensity; however, higher sensitivity was associated with greater disability (r=0.36, P<0.01), and lower registration of sensation was associated with poorer emotional (r=0.31, P<0.01), social (r=0.35, P<0.01), and school-related (r=0.49, P<0.001) QOL. Sensory modulation, pain intensity, and catastrophizing contributed independently to disability; catastrophizing mediated sensory sensitivity and both functional disability and emotional QOL. DISCUSSION: This study is the first to demonstrate that atypical sensory modulation patterns are associated with poorer function for adolescents with persistent pain, suggesting that individualized sensory-informed interventions can potentially facilitate participation in daily activities and improve QOL