1. ADOLESCENTS’ PERCEPTIONS OF THEIR RELATIONSHIP TO A SIBLING WITH CHRONIC PAIN Ayala Y. Gorodzinsky 1, Susan T. Heinze 1, Jessica M. Joseph 1, Gustavo R. Medrano 1, Jamie Elftman, Kimberly Anderson Khan 2,3, Keri Hainsworth 2,3, Steven J. Weisman 2,3 & W. Hobart Davies 1,3 University of Wisconsin - Milwaukee 1, Children’s Hospital of Wisconsin 2 & Medical College of Wisconsin 3 Purpose To provide an understanding of the influence of chronic pain on sibling relationships. Methods Nine adolescents participated in this study; each had a sibling being treated for chronic pain at a tertiary pain clinic at a large Midwestern children’s hospital. A semi-structured interview created for this study focused on the sibling relationship and changes in the familial relationships since the onset of the chronic pain. Families were excluded from the sample if more than one sibling was experiencing or had experienced chronic pain. Correspondence to Ayala Y. Gorodzinsky University of Wisconsin – Milwaukee, Department of Psychology, Milwaukee, WI 53211 Email: gorodzi2@uwm.edu Conclusions This study provides information beneficial to understanding how living with a child who has chronic pain can affect family dynamics from a sibling’s perspective. Results are congruent with the family systems theory that changes in the family system, such as one family member experiencing chronic pain, can affect the development and functioning of any or all of the other family members, as well as all of the relationship micro-systems in the family. This study also provides unique reports from the siblings’ perspectives on changes to their relationships with their sibling and parents. Though the themes that are presented in the results of this study are those which were reported by the majority of the participants, there were some idiosyncratic themes that are of potential clinical significance. These included: Reports of a general lack of understanding of the effects of chronic pain by individuals outside the family A sense of forced autonomy, including receiving less attention from parents and becoming more self-sufficient An increase in positive interactions with others as a result of living with a family member experiencing chronic pain Future Research Continuing to understand the themes reported by siblings in this study would provide clinicians with increased information regarding the changes to the family and family relationships when a child is experiencing chronic pain. Questions that have been cultivated from the results of the current study include: Do patient and sibling perspectives correlate with one another? Do the patients also view the same aspects of the changes caused by their chronic pain as unfavorable or positive to their family as the siblings reported? Table 1. Core idea categorizations most commonly reported across interviews (Typical* core idea categorizations). Background Sibling relationships directly influence later relationships (Rosen et al., 2002; Volling et al., 1997). Living with an individual who has a chronic medical condition can influence a person’s psychosocial development (Williams, 1997). Given this, it is important to understand the quality of the relationship between siblings when one sibling has a chronic medical condition. Approximately one in four adolescents in the United States are affected by chronic pain, (Kashikar-Zuck et al., 2001), therefore research regarding sibling relationships in the pediatric chronic pain population is relevant for many families and health care professionals. Core Idea Categorization Theme Related to Participants’ Perceptions of Changes in the Family Illustrative Quotation from Interview The patient’s experience of chronic pain is affecting one or both parents the most of all family members “I guess my parents because they have to take time off work to take her places.” Sibling conflict is typical of siblings, and not due to the patient’s experiences of pain or consequences of the pain “Yeah, we fight sometimes and she hits me, but that’s just sibling stuff.” Siblings’ report that there has been no change to their relationship with their parent(s) since the onset of the patient’s chronic pain “They expect the same things from me, they do the same things for me, they think about me the same way. At least I hope they do. I like to think that hasn’t changed too much.” Core Idea Categorization Theme Related to Participants’ Awareness of Patients’ Pain Experiences Illustrative Quotation from Interview Description of the location of the patient’s pain “[Child] says it’s in her middle to left back.” Description of how long patient has been in pain “I think it was like, last year in like October or something.” Description of patient’s pain experiences“If it’s really bad she’ll be on the floor, like in a ball for half an hour just not talking.” Description of the frequency of the patient’s pain “[child experiences pain] mainly during school.” References Hill, C.E. et al. (2005). Consensual qualitative research: An update. Journal of Counseling Psychology, 42, 2, 196-205. Hill, C.E. et al. (1997). A guide to conducting consensual qualitative research. The Counseling Psychologist, 25(4), 517-572. Kashikar-Zuck, S. et al. (2001). Depression and functional disability in chronic pediatric pain, The Clinical Journal of Pain, 17, 341-349. Rosen, E. et al. (2002). The sibling empty nest syndrome: The experience of sadness as siblings leave the family home. Journal of Human Behavior in the Social Environment, 6(1), 65-80. Volling, B.L. et al. (1997). Young children’s social relationships with siblings and friends. American Journal of Orthopsychiatry, 67(1), 102-111. Williams, P.D. (1997). Siblings and pediatric chronic illness: A review of the literature. International Journal of Nursing Studies, 34(4), 312-323. Results The most emergent theme in the participants’ responses was their acceptance of the following changes, perceived as necessary and commonplace due to the patients’ experiences. Common changes noted by more than half of the participants were that: Parents treat the patient with chronic pain differently than before the onset of pain “Just more aware of her [patient] presence, more cautious of something that might hurt her head or give her a headache, not treat her differently as in they [parents] favor her, just treat her differently as in they they’re more concerned.” Parent(s) take most of the responsibility for caring for patient’s pain, by missing work or staying home from work “My mom had to put like half of her life on hold to take care of my sister.” Family activities are not always altered by the patient’s experiences of pain, but that the patient may have to take breaks or stop doing certain activities because of their pain “They’re not that affected by his pain, but they can…We might have to slow down at times, and stop and get his pills and stuff…” Interview Coding Procedure Interviews were coded using the Consensual Qualitative Research (CQR) method (Hill et al., 1997; 2005). The CQR method is used to assess for common themes across interviews, referred to as core idea categorizations. In this study, core idea categorizations were modified slightly from the original method (Hill et al., 1997), and core ideas were classified into three different categorizations: typical* if found across 8 of the 9 interviews, typical if found in 4 to 7 interviews, and variant if reported by 2 or 3 participants. PatientParticipant Average age (years)14.5 (SD = 1.51)14.5 (SD = 1.74) Gender7 female, 1 male4 female, 5 male Time since pain onset (based on 8 siblings’ reports) M = 27.13 months (SD = 24.84; R = 6 to 84) N/A Average length of interview N/A for this study16.5 minutes (SD = 4.15)