Skip to main content Accessibility help

We use cookies to distinguish you from other users and to provide you with a better experience on our websites. Close this message to accept cookies or find out how to manage your cookie settings.

Close cookie message
×
Hostname: page-component-cd9895bd7-dk4vv Total loading time: 0 Render date: 2024-12-23T13:02:09.216Z Has data issue: false hasContentIssue false

Chapter 5 - Chronic Illness and the Family Unit

Published online by Cambridge University Press:  18 January 2020

Kristin H. Kroll
Kristin H. Kroll
Affiliation:
Medical College of Wisconsin
Get access

Summary

This chapter focuses on increasing awareness about navigating the health care system as a family unit and the impact of health literacy on medical outcomes, as well as techniques to help assess and improve health literacy for families. The reader will then be introduced to a review of the current research literature on risk factors and psychological outcomes associated with having a young member of the family experiencing medical problems. Particular emphasis is given to helping siblings of chronically ill children adjust to the change in family dynamics, as well as strategies for assessing and managing parental stress associated with a child’s chronic illness. Clinicians are also presented with applicable resources that will assist them in ensuring the overall psychological health of the patient’s family members.

Keywords

health care systemsiblingparentparent illnesshealth literacy
Type
Chapter
Information
Pediatric Psychology in Clinical Practice
Empirically Supported Interventions
 , pp. 83 - 100
Publisher: Cambridge University Press
Print publication year: 2020

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

Aamotsmo, T. & Bugge, K. (2013). The healthy parent’s role in the family when the other parent is in the palliative phase of cancer: challenges and coping in parenting young children. Palliative and Supportive Care, 12(4), 1–13.Google ScholarPubMed
Barakat, L., Patterson, C., Weinberger, B., Simon, K., Gonzalez, E., & Dampier, C. (2007). A prospective study of the role of coping and family functioning in health outcomes for adolescents with sickle cell disease. Journal of Pediatric Hematology Oncology, 29, 752–760.Google Scholar
Bergman, A., Axberg, V., & Hanson, E. (2017). When a parent dies – a systematic review of the effects of support programs for parentally bereaved children and their caregivers. BMC Palliative Care, 16(39), 1–15.Google Scholar
Boston University. (2018). Health Literacy Tool Shed. Retrieved November 16, 2018, from https://healthliteracy.bu.edu/.Google Scholar
Clemans-Cope, L. & Kenney, G. (2007). Low income parents’ reports of communication problems with health care providers: effects of language and insurance. Public Health Reports, 122(2), 206–216.Google Scholar
Cousino, M. & Hazan, R. (2013). Parenting stress among caregivers of children with chronic illness: a systematic review. Journal of Pediatric Psychology, 38(8), 809–828.CrossRefGoogle ScholarPubMed
Dolgin, M., Somer, E., Zaidel, N., & Zaizov, R. (1997). A structured group intervention for siblings of children with cancer. Journal of Child and Adolescent Group Therapy, 1, 3–18.Google Scholar
Fleary, S. & Heffer, R. (2013). Impact of growing up with a chronically ill sibling on well siblings’ late adolescent functioning. ISRN Family Medicine, 2013, Article ID 737356.Google Scholar
Gan, L., Lum, A., Wakefield, C., Nandakumar, B., & Fardell, J. (2017). School experiences of siblings of children with chronic illness: a systematic literature review. Journal of Pediatric Nursing, 33, 23–32.Google Scholar
Houck, C., Rodrigue, J., & Lobato, D. (2007). Parent–adolescent communication and psychological symptoms among adolescents with chronically ill parents. Journal of Pediatric Psychology, 32(1), 596–604.Google Scholar
Incledon, E., Williams, L., Hazell, T., Heard, T. Flowers, A., & Hisock, H. (2015). A review of factors associated with mental health in siblings of children with chronic illness. Journal of Child Health Care, 19(2), 182–194.Google Scholar
Kramer, R. (1984). Living with childhood cancer: impact on the healthy siblings. Oncology Nursing Forum, 11, 44–51.Google Scholar
Kratz, L., Uding, N., Trahms, C., Villareale, N., & Kieckhefer, G. (2009). Managing childhood chronic illness: parent perspectives and implications for parent–provider relationships. Families, Systems & Health 27(4), 303–313.Google Scholar
Labay, L. & Walco, G. (2004). Brief report: empathy and psychological adjustment in siblings of children with cancer. Journal of Pediatric Psychology, 29(4), 309–314.Google Scholar
Meltzer, L. & Mindell, J. (2006). Impact of a child’s chronic illness on maternal sleep and daytime functioning. JAMA Internal Medicine, 166(16), 1749–1755.Google Scholar
Minuchin, S., Montalvo, B., Guerney, B., Rosman, B., & Schumer, F. (1967). Families of the Slums. New York: Basic Books.Google Scholar
Mullins, L., Fuemmeler, B., Hoff, A., Chaney, J., Van Pelt, J., & Ewing, C. (2004). The relationship of parental overprotection and perceived child vulnerability to depressive symptomotology in children with type 1 diabetes mellitus: the moderating influence of parenting stress. Children’s Health Care, 33, 21–34.Google Scholar
NeedyMeds.org. (2018). Retreats, Camps and Recreational Programs for Chronic/Serious/Life Threatening Illnesses – Children. Retrieved November 12, 2018, from www.needymeds.org/camps.taf?_function=list_disease&disease_id=345&disease=Chronic/Serious/Life%20Threatening%20Illnesses-Children.Google Scholar
Phillips, F. (2014). Adolescents living with a parent with advanced cancer: a review of the literature. Psycho-Oncology, 23, 1323–1339.CrossRefGoogle Scholar
Russell, K., Adams, P., Moore, C., Convery, M., Shea, S., & Rauch, P. (2014). Marjorie E. Korf Parenting at a Challenging Time Program. Toolkit to Help Educators Support Children of Parents with Serious Illness. Retrieved November 17, 2018, from www.mghpact.org/assets/media/documents/MGH-Cancer-Educator-Toolkit.pdf.Google Scholar
SeriousFun Children’s Network. (n.d.). Our Camps & Programs. Retrieved November 12, 2018, from www.seriousfunnetwork.org/camps-and-programs.Google Scholar
Sharpe, D. & Rossiter, L. (2002). Siblings of children with a chronic illness: a meta-analysis. Journal of Pediatric Psychology, 27(8), 699–710.Google Scholar
Sheehan, S., Drauker, C., Christ, G., Mayo, M., & Parish, S. (2014). Telling adolescents a parent is dying. Journal of Palliative Medicine, 17(5), 512–520.Google Scholar
Sibling Support Project. (n.d.) Sibling Support Project. Retrieved November 13, 2018, from www.siblingsupport.org/.Google Scholar
Streisand, R., Braniecki, S., Tercyak, K., & Kazak, A. (2001). Childhood illness-related parenting stress: the Pediatric Inventory for Parents. Journal of Pediatric Psychology, 26(3), 155–162.Google Scholar
Sudore, R. & Schillinger, D. (2009). Interventions to improve care for patients with limited health literacy. Journal of Clinical Outcomes Management, 16(1), 20–29.Google ScholarPubMed
Yin, H., Johnson, M., Mendelson, A., Abrams, M., & Dreyer, B. (2009). The health literacy of parents in the United States: a nationally representative study. Pediatrics, 124(3), S289–S298.Google Scholar
NeedyMeds.org, www.needymeds.org/camps.taf?_function=list_disease&disease_id=345&disease=Chronic/Serious/Life%20Threatening%20Illnesses-ChildrenGoogle Scholar
Serious Fun Children’s Network, www.seriousfunnetwork.org/camps-and-programsGoogle Scholar
Sibling Support Project, Resources for Siblings of Patients with Various Health Concerns, www.siblingsupport.org/Google Scholar
Marjorie E. Korff PACT Program: Parenting at a Challenging Time, www.mghpact.org/assets/media/documents/MGH-Cancer-Educator-Toolkit.pdfGoogle Scholar
Vadasy, P. & Meyer, D. (1996). Living with a Brother or Sister with Special Needs: A Book for Sibs. Seattle: Washington University Press.Google Scholar
Cline, F. & Greene, L. (2007). Parenting Children with Health Issues. Golden, CO: Love and Logic Institute.Google Scholar
Abrams, M. & Dreyer, B. (2008). Plain Language Pediatrics: Health Literacy Strategy and Communication Resources for Common Pediatric Topics. Elk Grove Village, IL: American Academy of Pediatrics.Google Scholar

Save book to Kindle

To save this book to your Kindle, first ensure [email protected] is added to your Approved Personal Document E-mail List under your Personal Document Settings on the Manage Your Content and Devices page of your Amazon account. Then enter the ‘name’ part of your Kindle email address below. Find out more about saving to your Kindle.

Note you can select to save to either the @free.kindle.com or @kindle.com variations. ‘@free.kindle.com’ emails are free but can only be saved to your device when it is connected to wi-fi. ‘@kindle.com’ emails can be delivered even when you are not connected to wi-fi, but note that service fees apply.

Find out more about the Kindle Personal Document Service.

Available formats
×

Save book to Dropbox

To save content items to your account, please confirm that you agree to abide by our usage policies. If this is the first time you use this feature, you will be asked to authorise Cambridge Core to connect with your account. Find out more about saving content to Dropbox.

Available formats
×

Save book to Google Drive

To save content items to your account, please confirm that you agree to abide by our usage policies. If this is the first time you use this feature, you will be asked to authorise Cambridge Core to connect with your account. Find out more about saving content to Google Drive.

Available formats
×