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ADOLESCENTS’ PERCEPTIONS OF SIBLING RELATIONSHIPS WHEN THEIR SIBLING HAS CHRONIC PAIN Ayala Y. Gorodzinsky 1 , Susan T. Heinze 1 , Jessica M. Joseph 1 , Gustavo R. Medrano 1 , Katherine S. Salamon 1 , Kimberly Anderson Khan 2,3 , Keri Hainsworth 3 & Steven J. Weisman 2,3 University of Wisconsin - Milwaukee 1 , Children’s Hospital of Wisconsin 2 & Medical College of Wisconsin 3 Objective To understand the effects of chronic pain on adolescent sibling relationships when one sibling has chronic pain. Method Six adolescents have been interviewed in this ongoing study using semi-structured interviews focused on the sibling relationship and changes in the familial relationships since the siblings’ chronic pain began. Participants are between the ages of 12 and 18 years and have siblings who are patients at the Jane B. Pettit Pain and Palliative Care Center at Children’s Hospital of Wisconsin. The sibling closest in age to the adolescent with chronic pain is asked to participate in the study. Families are excluded from the sample if there is more than one sibling who is experiencing, or has experienced chronic pain. Interviews are being coded using the Consensual Qualitative Research method outlined by Hill and colleagues (1997). The CQR method has three stages which assess for common themes across interviews. The first stage involves categorizing all the interviewee’s comments into domains or general concepts. The comments in these domains are paraphrased and shortened into core ideas in the second stage of analysis. The final stage of analysis involves compiling the core ideas across interviews to find the most common core ideas in all interviews. At present time, the first stage of coding has been completed on only six interviews. Correspondence to Ayala Y. Gorodzinsky University of Wisconsin – Milwaukee, Department of Psychology, Milwaukee, WI 53211 Email: [email protected] Implications There is currently no measure that assesses sibling relationships when a sibling has chronic pain. The results from this study may assist in creating a unified measure assessing siblings’ perceptions of their relationships, when one child has chronic pain. Information from this measure would increase the knowledge available from the siblings’ perspectives of how living with a child who has chronic pain affects families and familial relationships. The focus of future research in this area may be on the experience of living with a family member who has chronic pain from the siblings’ perceptive to enhance the clinical information available from the families in Results Thus far, the 11 most commonly found domains are: Background Sibling relationships have a great influence on later relationships (Rosen et al., 2002; Volling, Youngblade & Belsky, 1997), and 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. With approximately one in four adolescents in the United States affected by chronic pain, (Kashikar-Zuck, Goldschneider, Powers, Vaught & Hershey, 2001), research regarding sibling relationships in the paediatric chronic pain population is relevant for many families and health care professionals. Similar to how organic physical problems affect families, chronic pain also has a potentially strong negative influence on quality of life not only of the child experiencing the pain but also on the quality of life of the entire family (Hunfeld et al., 2001), which could result in changes in the sibling relationships. Therefore, it is important to examine the perceptions of well children and adolescents with siblings with chronic pain separately from well youth whose siblings have other chronic medical conditions. Significance There is limited research available regarding sibling relationships when one sibling has chronic pain, and this study will provide much needed descriptive information about how siblings think their familial relationships, specifically sibling, have been effected by the chronic pain experience. Description of team The research team includes graduate students from the clinical psychology program at the University of Wisconsin-Milwaukee, a research assistant from UWM, a clinical psychologist, a research psychologist and support from the interdisciplinary team from the Jean B. Pettit Pain and Palliative Care Center. The study could also not be possible without the assistance of all the members of the interdisciplinary team at the clinic. Participants/ Siblings Children with pain Age M = 14.67, SD = 2.07 M = 14.17, SD = 1.17 Gender Male = 3, Female = 3 Male = 1, Female = 5 Domain Example from an interview Knowledge about child’s medical history, pain experience and pain characteristics “His pain is in his stomach.” How the child’s experience of chronic pain is affecting the sibling’s life “Sometimes he won’t be able to do stuff [because he has pain], and I’ll have to go by myself to do it.” How the child’s experience of chronic pain is affecting more than two members of the family’s lives “We can’t deal with it because she has to lay on the couch.” Cause of the child’s chronic pain “She has post-concussive syndrome.” How the child’s experience of chronic pain is affecting the child’s life “It actually is painful, and it actually is hard for her.” Sibling conflict “We argue a lot.” How the child’s experience of chronic pain is affecting one or both parents “My mom…gets the food [she] can eat. She makes a lot more fresh food at home now.” Child’s relationship with one or both parents “I know that [she] talks to my mom a lot more…with the pain and everything.” Sibling’s relationship with one or both parents “A lot more attention is taken off of me.” Positive sibling interactions “She helps me with everything.” How the child’s experience of chronic pain is affecting the sibling relationship “I can’t really run around with her anymore.” References Hunfeld, J.A.M., Perquin, C.W., Duivenvoorden, H.J., Hazebroek-Kampschreur, A.A.J.M., Passchier, J., van Suijlekom-Smit, L.W.A. et al. (2001). Chronic pain and its impact on quality of life in adolescents and their Families. Journal of Pediatric Psychology, 26(3), 145-153. Kashikar-Zuck, S., Goldschneider, K.R., Powers, S.W., Vaught, M.H. & Hershey, A.D. (2001). Depression and functional disability in chronic pediatric pain, The Clinical Journal of Pain, 17,41-349. Rosen, E., Ackerman, L. & Zosky, D. (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., Youngblade, L.M. & Belsky, J. (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. Age and gender of participants and children with pain

ADOLESCENTS’ PERCEPTIONS OF SIBLING RELATIONSHIPS WHEN THEIR SIBLING HAS CHRONIC PAIN

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ADOLESCENTS’ PERCEPTIONS OF SIBLING RELATIONSHIPS WHEN THEIR SIBLING HAS CHRONIC PAIN Ayala Y. Gorodzinsky 1 , Susan T. Heinze 1 , Jessica M. Joseph 1 , Gustavo R. Medrano 1 , Katherine S. Salamon 1 , Kimberly Anderson Khan 2,3 , Keri Hainsworth 3 & Steven J. Weisman 2,3 - PowerPoint PPT Presentation

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Page 1: ADOLESCENTS’ PERCEPTIONS OF SIBLING RELATIONSHIPS WHEN THEIR SIBLING HAS CHRONIC PAIN

ADOLESCENTS’ PERCEPTIONS OF SIBLING RELATIONSHIPS WHEN THEIR SIBLING HAS CHRONIC

PAIN Ayala Y. Gorodzinsky1, Susan T. Heinze1, Jessica M. Joseph1, Gustavo R.

Medrano1, Katherine S. Salamon1, Kimberly Anderson Khan2,3, Keri Hainsworth3 & Steven J. Weisman2,3

University of Wisconsin - Milwaukee1, Children’s Hospital of Wisconsin2 & Medical College of Wisconsin3

Objective

To understand the effects of chronic pain on adolescent sibling

relationships when one sibling has chronic pain.

Method

Six adolescents have been interviewed in this ongoing study using semi-structured interviews focused on the sibling relationship and changes in the familial relationships since the siblings’ chronic pain began.

Participants are between the ages of 12 and 18 years and have siblings who are patients at the Jane B. Pettit Pain and Palliative Care Center at Children’s Hospital of Wisconsin. The sibling closest in age to the adolescent with chronic pain is asked to participate in the study. Families are excluded from the sample if there is more than one sibling who is experiencing, or has experienced chronic pain.

Interviews are being coded using the Consensual Qualitative Research method outlined by Hill and colleagues (1997). The CQR method has three stages which assess for common themes across interviews. The first stage involves categorizing all the interviewee’s comments into domains or general concepts. The comments in these domains are paraphrased and shortened into core ideas in the second stage of analysis. The final stage of analysis involves compiling the core ideas across interviews to find the most common core ideas in all interviews.

At present time, the first stage of coding has been completed on only six interviews.

Correspondence to Ayala Y. Gorodzinsky University of Wisconsin – Milwaukee, Department of Psychology, Milwaukee, WI 53211

Email: [email protected]

Implications

There is currently no measure that assesses sibling relationships when a sibling has chronic pain. The results from this study may assist in creating a unified measure assessing siblings’ perceptions of their relationships, when one child has chronic pain. Information from this measure would increase the knowledge available from the siblings’ perspectives of how living with a child who has chronic pain affects families and familial relationships.

The focus of future research in this area may be on the experience of living with a family member who has chronic pain from the siblings’ perceptive to enhance the clinical information available from the families in paediatric settings.

Results

Thus far, the 11 most commonly found domains are:

Background

Sibling relationships have a great influence on later relationships (Rosen et al., 2002; Volling, Youngblade & Belsky, 1997), and 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. With approximately one in four adolescents in the United States affected by chronic pain, (Kashikar-Zuck, Goldschneider, Powers, Vaught & Hershey, 2001), research regarding sibling relationships in the paediatric chronic pain population is relevant for many families and health care professionals.

Similar to how organic physical problems affect families, chronic pain also has a potentially strong negative influence on quality of life not only of the child experiencing the pain but also on the quality of life of the entire family (Hunfeld et al., 2001), which could result in changes in the sibling relationships. Therefore, it is important to examine the perceptions of well children and adolescents with siblings with chronic pain separately from well youth whose siblings have other chronic medical conditions.

Significance

There is limited research available regarding sibling relationships when one sibling has chronic pain, and this study will provide much needed descriptive information about how siblings think their familial relationships, specifically sibling, have been effected by the chronic pain experience.

Description of team

The research team includes graduate students from the clinical psychology program at the University of Wisconsin-Milwaukee, a research assistant from UWM, a clinical psychologist, a research psychologist and support from the interdisciplinary team from the Jean B. Pettit Pain and Palliative Care Center. The study could also not be possible without the assistance of all the members of the interdisciplinary team at the clinic.

Participants/Siblings

Children with pain

Age M = 14.67, SD = 2.07

M = 14.17, SD = 1.17

Gender Male = 3, Female = 3

Male = 1, Female = 5

Domain Example from an interview

Knowledge about child’s medical history, pain experience and pain characteristics

“His pain is in his stomach.”

How the child’s experience of chronic pain is affecting the sibling’s life

“Sometimes he won’t be able to do stuff [because he has pain], and I’ll have to go by myself to do it.”

How the child’s experience of chronic pain is affecting more than two members of the family’s lives

“We can’t deal with it because she has to lay on the couch.”

Cause of the child’s chronic pain “She has post-concussive syndrome.”

How the child’s experience of chronic pain is affecting the child’s life

“It actually is painful, and it actually is hard for her.”

Sibling conflict “We argue a lot.”

How the child’s experience of chronic pain is affecting one or both parents

“My mom…gets the food [she] can eat. She makes a lot more fresh food at home now.”

Child’s relationship with one or both parents

“I know that [she] talks to my mom a lot more…with the pain and everything.”

Sibling’s relationship with one or both parents

“A lot more attention is taken off of me.”

Positive sibling interactions “She helps me with everything.”

How the child’s experience of chronic pain is affecting the sibling relationship

“I can’t really run around with her anymore.”

References

Hunfeld, J.A.M., Perquin, C.W., Duivenvoorden, H.J., Hazebroek-Kampschreur, A.A.J.M., Passchier, J., van Suijlekom-Smit, L.W.A. et al. (2001). Chronic pain and its impact on quality of life in adolescents and their Families. Journal of Pediatric Psychology, 26(3), 145-153.

Kashikar-Zuck, S., Goldschneider, K.R., Powers, S.W., Vaught, M.H. & Hershey, A.D. (2001). Depression and functional disability in chronic pediatric pain, The Clinical Journal of Pain, 17,41-349.

Rosen, E., Ackerman, L. & Zosky, D. (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., Youngblade, L.M. & Belsky, J. (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.

Age and gender of participants and children with pain