Cystic Fibrosis coping for adolescents, children

Cystic Fibrosis coping strategies

By

Aysha Siddiqui

Walden University

Introduction

Cystic Fibrosis or CF is an inherited disease of the glands (secretory glands) that make mucus and sweat (National Institute of Health, NIH). The organs mainly affected by CF are the lungs, pancreas, liver, intestines, sinuses, and sex organs. In patients who suffer from CF, the mucus made by the tissues becomes thick and sticky. Mucus is a substance made by the tissues that keep the lining of some organs moist. Mucus is normally light, watery substance but in patients of CF it becomes thick and effect the function of the organ (NIH). In lungs of patients with CF, mucus can block the airways (tubes that carry air in and out of lungs) and cause damaging lung infections.

CF can also block tubes or ducts in pancreas that result is serious digestion problems. When pancreas are affected, enzymes that break down food are not produced. People who suffer from CF are also at higher risk of developing diabetes and infertility (NIH).

Treatment and coping strategies for CF

Treatment and coping strategies for CF usually depend on the intensity of the disease and symptoms (www.cff.org). Age of the patient also plays a vital role in the type of treatment prescribed. Adolescents and children may find the treatment requirements and compliance as restricting, a disruption in their regular life with peers or at school (Zeltzer et al, 1980). Zelter et al (1980) found that more females with CF report the disease to affect their physical appearance as compared to males with CF.

Differences in a health psychologist work with children, adolescents and adults.  The NIH reports that 30,000 children and adults suffer from cystic fibrosis at a given time (cystic fibrosis foundation, www.cff.org). Dealing with the severe symptoms and regular treatment of CF is part of lives of the children who suffer from CF as well as their parents. When suffering from CF, emotional issues also arise among patients that can be dealt with specific coping strategies.

 Gudas et al (1991) conducted a study 100 patients between ages 5 to 20 years old with cystic fibrosis. The study involved interviews with patients’ physicians on compliance with the treatment prescribed for the patients’ treatment. The results showed evidence that there is a relation between age and ‘perceived compliance’ with the treatment. Younger children showed a higher rate of compliance and knowledge of the disease, optimism in children also had a direct connection with compliance.

Coping strategies among children and adolescents can be effected by how these young people perceive their disease, its causes and treatment. CF is an inherited disease, and it is typical teenage attitude to play a ‘blame game’. Adolescents, particularly who maybe living with a single parent or have divorced parents have a higher chance of associating their disease to emotional factors. This can affect their perceptions of compliance with treatment and their general health.

In comparison, it is not usual behavior among adults to find reasons related to external factors for non-compliance. Depression, stress of work (not present in adolescents or children’s lives) or age related physical issues, however, can contribute to lack of compliance.

Interventions addressed by health psychologist

Venters (1981) study was based on 100 families managing childhood cystic fibrosis for years and their response to the treatment of the disease. This study concluded that professionals providing support to families and young patients should consider familial interactions. The ideal state of coping strategies is to encourage familial support and attaching a personal meaning to the role of each family member.

When developing coping strategies for adolescents, children with CF it is important to approach points like peer pressure, teenage challenges (examples are middle school transitions) like added academic burden, responsibilities of a young adult. When an intervention for adults is designed then points like stress at work, relationship hardships (divorce, break ups), alcohol consumption are of importance.

References

Gudas, L. J., Koocher, G. P., & Wypij, D. (1991). Perceptions of medical compliance in children and adolescents with cystic fibrosis. Journal of Developmental & Behavioral Pediatrics, 12(4), 236-242.

What is Cystic Fibrosis? National Institute of Health (NIH). Retrieved from http://www.nhlbi.nih.gov/health/health-topics/topics/cf/

Cystic Fibrosis Foundation- www.cff.org

Venters, M. (1981). Familial coping with chronic and severe childhood illness: The case of cystic fibrosis. Social Science & Medicine. Part A: Medical Psychology & Medical Sociology, 15(3), 289-297.

Zeltzer, L., Kellerman, J., Ellenberg, L., Dash, J., & Rigler, D. (1980). Psychologic effects of illness in adolescence. II. Impact of illness in adolescents—crucial issues and coping styles. The journal of pediatrics, 97(1), 132-138.