Exploring Family Communication About Sickle Cell Disease in Adolescence

Joyce Graff, Jane Hankins, Rebecca J. Graves, Kimberly Y. Robitaille, Ruth Roberts, Katherine Cejda, Belinda T. Hardy, Margery Johnson, Jerlym S. Porter

Research output: Contribution to journalArticle

4 Citations (Scopus)

Abstract

Sickle cell disease (SCD) is a lifelong disorder that involves progressive organ damage and requires ongoing medical attention to prevent and treat episodic acute complications. Children with SCD need ongoing monitoring and extra attention that may be stressful to family members. Communication within families can help resolve family stress and may be associated with medical follow-up and management of SCD. Focus groups were conducted with 12 African American families to explore the communication that occurred within and outside of the family from the perspectives of adolescents with SCD, siblings, and parents. Factors that influence family communication were explored. The extended family was an important social network and resource to adolescents, siblings, and parents. Family member knowledge of SCD was an important factor that influenced communication about SCD; adolescents and parents communicated more easily than siblings and also reported having more knowledge of SCD than siblings. Future research focusing on the knowledge of immediate and extended family members and their recognition of their contribution to the child with SCD is recommended.

Original languageEnglish (US)
Pages (from-to)323-336
Number of pages14
JournalJournal of Pediatric Oncology Nursing
Volume29
Issue number6
DOIs
StatePublished - Nov 1 2012

Fingerprint

Sickle Cell Anemia
Communication
Siblings
Parents
Focus Groups
Social Support
African Americans

All Science Journal Classification (ASJC) codes

  • Pediatrics
  • Oncology(nursing)

Cite this

Graff, J., Hankins, J., Graves, R. J., Robitaille, K. Y., Roberts, R., Cejda, K., ... Porter, J. S. (2012). Exploring Family Communication About Sickle Cell Disease in Adolescence. Journal of Pediatric Oncology Nursing, 29(6), 323-336. https://doi.org/10.1177/1043454212456086

Exploring Family Communication About Sickle Cell Disease in Adolescence. / Graff, Joyce; Hankins, Jane; Graves, Rebecca J.; Robitaille, Kimberly Y.; Roberts, Ruth; Cejda, Katherine; Hardy, Belinda T.; Johnson, Margery; Porter, Jerlym S.

In: Journal of Pediatric Oncology Nursing, Vol. 29, No. 6, 01.11.2012, p. 323-336.

Research output: Contribution to journalArticle

Graff, J, Hankins, J, Graves, RJ, Robitaille, KY, Roberts, R, Cejda, K, Hardy, BT, Johnson, M & Porter, JS 2012, 'Exploring Family Communication About Sickle Cell Disease in Adolescence', Journal of Pediatric Oncology Nursing, vol. 29, no. 6, pp. 323-336. https://doi.org/10.1177/1043454212456086
Graff, Joyce ; Hankins, Jane ; Graves, Rebecca J. ; Robitaille, Kimberly Y. ; Roberts, Ruth ; Cejda, Katherine ; Hardy, Belinda T. ; Johnson, Margery ; Porter, Jerlym S. / Exploring Family Communication About Sickle Cell Disease in Adolescence. In: Journal of Pediatric Oncology Nursing. 2012 ; Vol. 29, No. 6. pp. 323-336.
@article{0b29c5db65f6401db0280d51ac9848b8,
title = "Exploring Family Communication About Sickle Cell Disease in Adolescence",
abstract = "Sickle cell disease (SCD) is a lifelong disorder that involves progressive organ damage and requires ongoing medical attention to prevent and treat episodic acute complications. Children with SCD need ongoing monitoring and extra attention that may be stressful to family members. Communication within families can help resolve family stress and may be associated with medical follow-up and management of SCD. Focus groups were conducted with 12 African American families to explore the communication that occurred within and outside of the family from the perspectives of adolescents with SCD, siblings, and parents. Factors that influence family communication were explored. The extended family was an important social network and resource to adolescents, siblings, and parents. Family member knowledge of SCD was an important factor that influenced communication about SCD; adolescents and parents communicated more easily than siblings and also reported having more knowledge of SCD than siblings. Future research focusing on the knowledge of immediate and extended family members and their recognition of their contribution to the child with SCD is recommended.",
author = "Joyce Graff and Jane Hankins and Graves, {Rebecca J.} and Robitaille, {Kimberly Y.} and Ruth Roberts and Katherine Cejda and Hardy, {Belinda T.} and Margery Johnson and Porter, {Jerlym S.}",
year = "2012",
month = "11",
day = "1",
doi = "10.1177/1043454212456086",
language = "English (US)",
volume = "29",
pages = "323--336",
journal = "Journal of Pediatric Oncology Nursing",
issn = "1043-4542",
publisher = "SAGE Publications Inc.",
number = "6",

}

TY - JOUR

T1 - Exploring Family Communication About Sickle Cell Disease in Adolescence

AU - Graff, Joyce

AU - Hankins, Jane

AU - Graves, Rebecca J.

AU - Robitaille, Kimberly Y.

AU - Roberts, Ruth

AU - Cejda, Katherine

AU - Hardy, Belinda T.

AU - Johnson, Margery

AU - Porter, Jerlym S.

PY - 2012/11/1

Y1 - 2012/11/1

N2 - Sickle cell disease (SCD) is a lifelong disorder that involves progressive organ damage and requires ongoing medical attention to prevent and treat episodic acute complications. Children with SCD need ongoing monitoring and extra attention that may be stressful to family members. Communication within families can help resolve family stress and may be associated with medical follow-up and management of SCD. Focus groups were conducted with 12 African American families to explore the communication that occurred within and outside of the family from the perspectives of adolescents with SCD, siblings, and parents. Factors that influence family communication were explored. The extended family was an important social network and resource to adolescents, siblings, and parents. Family member knowledge of SCD was an important factor that influenced communication about SCD; adolescents and parents communicated more easily than siblings and also reported having more knowledge of SCD than siblings. Future research focusing on the knowledge of immediate and extended family members and their recognition of their contribution to the child with SCD is recommended.

AB - Sickle cell disease (SCD) is a lifelong disorder that involves progressive organ damage and requires ongoing medical attention to prevent and treat episodic acute complications. Children with SCD need ongoing monitoring and extra attention that may be stressful to family members. Communication within families can help resolve family stress and may be associated with medical follow-up and management of SCD. Focus groups were conducted with 12 African American families to explore the communication that occurred within and outside of the family from the perspectives of adolescents with SCD, siblings, and parents. Factors that influence family communication were explored. The extended family was an important social network and resource to adolescents, siblings, and parents. Family member knowledge of SCD was an important factor that influenced communication about SCD; adolescents and parents communicated more easily than siblings and also reported having more knowledge of SCD than siblings. Future research focusing on the knowledge of immediate and extended family members and their recognition of their contribution to the child with SCD is recommended.

UR - http://www.scopus.com/inward/record.url?scp=84867670807&partnerID=8YFLogxK

UR - http://www.scopus.com/inward/citedby.url?scp=84867670807&partnerID=8YFLogxK

U2 - 10.1177/1043454212456086

DO - 10.1177/1043454212456086

M3 - Article

VL - 29

SP - 323

EP - 336

JO - Journal of Pediatric Oncology Nursing

JF - Journal of Pediatric Oncology Nursing

SN - 1043-4542

IS - 6

ER -