Longitudinal Assessment of Pain, Coping, and Daily Functioning in Children with Sickle Cell Disease Receiving Pain Management Skills Training
ABSTRACT Objective. To conduct intensive pain management skills training (IST) in children with sickle cell disease (SCD) and their parents and to comprehensively evaluate pain, coping, and daily functioning in children pre, immediately post, and 3 months following treatment. Methods. Three children who received IST in nonpharmacological and pharmacological pain management strategies completed a Coping Strategies Questionnaire (CSQ) at pre, post, and follow-up assessments, and daily pain and activity diaries for 18 weeks, spanning from 1 week pretreatment to 11 weeks posttreatment. Results. From pre- to posttreatment, 1 child receiving IST indicated increased report of active coping attempts and all 3 children indicated decreased report of negative thinking on the CSQ. Participants in IST used coping skills on 90% of days with pain and reported the skills to be moderately helpful on the daily diaries. For daily activities such as eating dinner, playing with friends, and hours slept, children participated similarly on days with pain and days without pain during the posttreatment period. Given the small number of participants in this study, individual cases are discussed to highlight similarities and differences in how participants responded to the treatment and during the 3-month follow-up period. Conclusions. In this pilot study, each participant showed improvement in coping and daily functioning after completing the IST program. Individual differences in response to treatment indicate the need for more targeted intervention programs that incorporate pharmacological and nonpharmacological components. The results of this study highlight both the promise and the complications of conducting comprehensive pain intervention and functional outcome studies in children with SCD.
Article: Parent perspectives on pain management, coping, and family functioning in pediatric sickle cell disease.[show abstract] [hide abstract]
ABSTRACT: Pediatric sickle cell disease is a chronic illness for which recurrent pain is a ubiquitous experience. This study used quantitative and qualitative methods to examine relationships between patient and family coping and health care utilization in children with sickle cell disease and to assess parents' recommendations for ensuring patient and family-centered care. Participants were 53 parents of children aged 7 to 13 with sickle cell disease across three large urban children's hospitals. Data showed that positive patient coping was related to positive family functioning and lower health utilization. In addition, parents report the need for comprehensive health care approaches that meet the physical and psychologic needs of patients and families.Clinical Pediatrics 06/2007; 46(4):311-9. · 1.15 Impact Factor