Chronic Pain Lived Experience of Pediatric Sickle Cell Disease: A Qualitative Study.
Objective: This study aimed to describe the child- and parent-centered lived experience of chronic sickle cell pain and its management among children and adolescents living with sickle cell disease (SCD). A secondary aim was to examine culturally relevant treatment preferences to inform clinically m...
| Publicado en: | Health Psychology Vol. 45; no. 1; pp. 5 - 14 |
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| Autores principales: | , , , , |
| Formato: | Artículo |
| Publicado: |
American Psychological Association
Jan2026
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| Materias: | |
| Acceso en línea: | Ver este registro en EBSCOhost |
| fields | @attributes: recordID: 1 pdfLink: plink: https://search.ebscohost.com/login.aspx?direct=true&db=ssf&AN=193372069&site=ehost-live header: @attributes: shortDbName: ssf uiTerm: 193372069 longDbName: Social Sciences Full Text (H.W. Wilson) uiTag: AN controlInfo: bkinfo: jinfo: jid: 02786133 82X jtl: Health Psychology issn: 02786133 maglogo: N pubinfo: dt: Jan2026 vid: 45 iid: 1 pid: 34 pub: American Psychological Association artinfo: ui: 193372069 10.1037/hea0001548 ppf: 5 ppct: 9 formats: tig: atl: Chronic Pain Lived Experience of Pediatric Sickle Cell Disease: A Qualitative Study. aug: au: Sil, Soumitri Mooney, Jan T. Shih, Sharon Dampier, Carlton Cohen, Lindsey L. affil: Aflac Cancer and Blood Disorders Center, Children's Healthcare of Atlanta, Atlanta, Georgia, United States Department of Pediatrics, Emory University School of Medicine Department of Psychiatry and Behavioral Sciences, Emory University School of Medicine Department of Psychology, Georgia State University su: Health services accessibility Sickle cell anemia Qualitative research Job absenteeism Autonomy (Psychology) Interviewing Schools Hospital care Family relations Parenting Experience Sound recordings Pain management Psychological stress Guilt (Psychology) Psychology of parents Social support Behavior therapy Socialization Adolescence Children Chronic pain & psychology Thematic analysis Research methodology Medical coding Grounded theory Data analysis software sug: subj: Health services accessibility Sickle cell anemia Qualitative research Job absenteeism Autonomy (Psychology) Interviewing Schools Hospital care Family relations Parenting Experience Sound recordings Pain management Psychological stress Guilt (Psychology) Psychology of parents Social support Behavior therapy Socialization Adolescence Children All Other Miscellaneous Schools and Instruction Elementary and Secondary Schools Sound recording merchant wholesalers Record Production Integrated Record Production/Distribution Other Individual and Family Services Chronic pain & psychology Thematic analysis Research methodology Medical coding Grounded theory Data analysis software keyword: adolescents chronic pain lived experience qualitative sickle cell disease adolescents chronic pain lived experience qualitative sickle cell disease ab: Objective: This study aimed to describe the child- and parent-centered lived experience of chronic sickle cell pain and its management among children and adolescents living with sickle cell disease (SCD). A secondary aim was to examine culturally relevant treatment preferences to inform clinically meaningful end points for nonpharmacological behavioral treatments and identify facilitators and barriers to behavioral treatments to enhance the feasibility and acceptability of future chronic sickle cell pain treatment programs. Method: Participants were 14 dyads of children and adolescents with SCD and their parents. A qualitative, participatory approach was used to conduct individual semistructured interviews with iterative refinement of the interview guide, coding, and analysis throughout. Results: Child and parent experiences described three overarching themes: (a) the experience of chronic sickle cell pain and its management, including the negative impact and increased stress from frequent school absences, hospitalizations, peer socialization, and changes in autonomy with age; (b) the impact on parent and family functioning, including parenting stress, needing community support, protecting each other from impacts of pain, and parents feeling guilt for the genetics of SCD; and (c) preferences for treatment and interventions, including expertise and trust in treating providers and skill acquisition to support living a full, valued life. Conclusions: Children with chronic SCD pain and their caregivers conceptualize children's pain experiences as complex, dynamic, and shaped by the surrounding context. Adapting interventions to address the unique individual and family experiences and needs may enhance behavioral pain interventions, treatment engagement, and optimize the health of children with chronic SCD pain. Public Significance Statement: Chronic pain among children and adolescents with sickle cell disease is not well understood with minimal effective treatment options. Children living with sickle cell disease and chronic pain along with their caregivers identified the negative impact chronic pain has on daily life, caregiver and family functioning, and preferences for pain treatment options that center the unique experiences of chronic sickle cell pain. This understanding of their lived experiences can guide public health efforts and policies aimed at equitable pain relief and care for children with sickle cell disease. pubtype: Academic Journal doctype: Article src: R language: English refInfo: copyright: @attributes: flag: N holdings: @attributes: islocal: N |
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