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Supporting parents with chronic illnesses

Janotha, Brenda L. DNP-DCC, ANP-BC

doi: 10.1097/01.NURSE.0000391404.43816.fb
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Parenting is doubly challenging when one parent is chronically ill. This comprehensive discussion will explain how to assess common problems and help parents maintain a sense of normalcy for their children.

Brenda L. Janotha is Chair of Undergraduate Education and an assistant clinical professor at Stony Brook School of Nursing, Stony Brook, N.Y.

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Figure

CHRONIC ILLNESS can be defined as a permanently altered state of health caused by a progressive pathological process.1 According to the CDC, chronic illness affects nearly half of all Americans, roughly 133 million people.2 Besides coping with their health problem, chronically ill adults who have children face the additional challenge of parenting with illness.

A good deal of research has been done about how a child's illness affects the family, but much less information is available about parents suffering with chronic illness.3 This article explores ways nurses can help adult patients and their children cope with a parent's chronic illness.

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Illness undermines family stability

Chronic illness brings about many changes that can threaten family stability.4 As chronically ill parents are forced to face the challenges of their illness, they must simultaneously adapt their family responsibilities.3,5

Research exploring the general perspective of parenting with illness is limited, but some studies have evaluated parents afflicted with specific chronic diseases, such as cancer, HIV infection, and multiple sclerosis. Information extrapolated from these reviews indicates that children with a parent who has a chronic illness experience greater psychological and social challenges than other children their age.6–8

The illness itself often predicts the effect on the family. Progressively debilitating diseases such as cancer and multiple sclerosis are especially likely to have a negative impact on families.9 Specific subjective symptoms, such as pain and fatigue, also undermine personal and social relationships.10

Table. C

Table. C

All diseases can be described by type of onset, course of progression, potential outcomes, and functional limitations. A chronic illness may also be described according to specific phases, such as crisis, chronic, and terminal phases. Classifying the illness helps predict how the illness will affect the family.11

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Far-reaching effects

Besides the disease itself, such factors as burden of care, financial impact, lifestyle modifications, relationship strain, and family role changes affect the family.4,12 Fear and uncertainty associated with disease can significantly reduce quality of life for all family members.13

Maintaining employment and insurance coverage may be an issue. Patients forced to make difficult economic decisions regarding other family necessities may delay seeking the medical care they need. When the cost of healthcare exceeds 2.5% of a family's income, the financial impact is substantial.12

Chronic illness also takes a toll on marriages and partner relationships. Research suggests that female partners of patients with chronic illness report greater difficulty coping than male partners.12 In marriages where one partner has a chronic illness, the divorce rate is more than 75%.14 Nurses need to assess how stress on partner relationships undermines family stability.

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Impact on children and family life

Parental overprotection has been observed in adults with chronic illness, who are more likely to perceive their children as medically vulnerable.15 These children have higher school absentee rates than other students with similar illnesses, due in part to their ill parent's perception of illness.16

Chronic illness tends to isolate the family, limiting social interactions for all members. Although acute illnesses may inspire increased assistance and support from friends and family, this support often evaporates during extended illnesses.11,13 Parental isolation is particularly damaging to the family because in our culture, parents often share and learn from each other.17 As a result, restrictions on social life and family activities may delay family development.18

When chronic illness shifts priorities within the family, focus and goals of the family unit must adapt.11 The roles of individual family members must change as well.

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Stages of childhood development

Parenting isn't static; parents' roles evolve as children grow and develop. For a summary of typical childhood needs and patterns of behavior at different stages of a child's life, see Childhood stages of development. Children with special developmental and learning needs must be evaluated individually, and professional guidance is recommended.19

Except for infants, children share a need to understand the cause of a parent's illness. They want to know whether they were responsible, whether it's contagious, and who will take care of them.19 Communication must be tailored to their age and developmental level to help them cope with a parent's illness.

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Helping children cope

Children with chronically ill parents often need professional help to learn how to adapt successfully. Although they may be given additional responsibilities as family roles shift, many lack adequate problem-solving skills and social support sources. These children have greater increased physical symptoms caused by psychological stress and lower life satisfaction compared with "healthy" children.17 This may lead to difficulty at home, school, and in children's social lives.20

A child's adjustment to a parent's illness is associated with good social support, lower self-reported levels of stress, and strongly developed coping strategies.4,17 These child-coping strategies include problem solving and seeking of support and acceptance.9,11,13

The healthiest adaptation is related to a strong family system with good communication skills.19 Limited emotional communication leads to poorer coping strategies. Poor adjustment is associated with avoidance behaviors, wishful thinking, and denial.4,19 Behavioral issues have also been reported and include introversion, disruptive behaviors, anxiety, and depressive symptoms.10

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Improving outcomes

Nurses must empower their patients with knowledge to maintain a cohesive family unit and ensure that the patient has a strong support system. You can help by:

  • reinforcing information provided to the patient and family about the illness, treatments, and possible long-term outcomes
  • discussing the effect of illness on the family and initiating therapeutic communication
  • formulating a plan of care with the family. With the patient's permission, invite all interested family members to participate.
  • providing the family with information on support groups and programs
  • referring families to professionals who are educated and experienced in chronic illness management.

Encourage parents to maintain daily family routines as much as possible. For example, families should maintain a schedule for regular sleep times, mealtimes, quiet time, and activities such as worship services or a family movie night. Parents should also make time for dates with their friends, extended family members, and special outings. They may wish to establish no visitor days reserved for family only.

Parents should encourage other adults to talk with their child about their illness. Involving older children in care planning may help them adapt by giving them a sense of control and purpose. The entire family should be involved in some aspect of the parent's care plan.

See Guidelines for parents for other practical suggestions.

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Parents are the experts

Reinforce with parents that they're the experts on their children: They know their children better than any professional ever could. The parents are the greatest asset the child has to successfully adapt.

Nurses in all specialties must recognize and assist parents with chronic illnesses. By understanding how an illness undermines family stability, nurses can promote adaptation and improve outcomes for the vulnerable family.

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Guidelines for parents4,11,13,17,19

  • Be Honest; Give Specific Information. Explain The Illness By Name; Discuss At Your Child'S Level Of Understanding.
  • You'Re The Expert When It Comes To Your Children; Use Your Experiences To Guide You.
  • Talk To Your Child; Your Child Should Hear Important Information From You. Don'T Let Your Child Overhear You Talking To Others.
  • Maintain Daily Routines; Continue Usual Social And After-School Activities. This Provides A Sense Of Security.
  • Inquire Details About Your Child'S Day; This Affirms The Importance Of Family Life.
  • Preserve Family Time, Activities, And Rituals.
  • Encourage Friends And Family To E-Mail Or Call You When Children Are At School To Avoid Interrupting Family Time.
  • Remember That Temperament And Developmental Stage Will Affect Your Child'S Ability To Cope. Tailor Discussions To The Child'S Age And Developmental Stage. Printed Materials About The Diagnosis May Help Older Children.
  • Respect Your Child'S Wishes If He Or She Doesn'T Want To Discuss The Illness. Some Children Have Difficulty Discussing Certain Topics.
  • Explore Questions With Your Child; Discover Concerns.
  • If You'Re Unsure How To Answer A Question Your Child Has, Tell The Child You Will Find Out And Get Back To Him Or Her.
  • Use Resources To Help With Your Answer: Social Workers, Healthcare Providers, Support Groups, Family, And Friends.
  • Seek Additional Professional Support If Needed. Psychology-Trained Professionals, Programs, Printed Materials, And Websites Can Provide Additional Information On Parenting And Illness.
  • Provide Updates. Keep Your Child "In The Know."
  • Use A Small Number Of Familiar Caregivers To Provide Stability.
  • After Careful Preparation, Allow Your Child To Visit In The Hospital. Bring A Familiar Adult Who Can Leave With The Child If The Child Wants To Leave During The Visit.
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REFERENCES

1. Miller JF. Coping With Chronic Illness: Overcoming Powerlessness. 3rd ed. Philadelphia, PA: F.A. Davis Company; 2000.
2. Centers for Disease Control and Prevention. Chronic diseases and health promotion .
3. Bodenheimer T, Chen E, Bennett HD. Confronting the growing burden of chronic disease: can the US health care workforce do the job? Health Aff (Millwood). 2009; 28(1): 64–74.
4. Rolland JS. Chronic illness and the family life cycle. In: Carter E, McGoldrick M, eds. The Expanded Family Life Cycle: Individual, Family and Social Perspectives. 4th ed. Boston, MA: Allyn and Bacon; 1989.
5. Morley D, Selai C, Schrag A, Thompson AJ, Jahanshahi M. Refinement and validation of the Parental Illness Impact Scale. Parkinsonism Relat Disord. 2010; 16(3): 181–185.
6. Foster G. Children who live in communities affected by AIDS. Lancet. 2006; 367(9511): 700–701.
7. Semple CJ, McCance T. Experience of parents with head and neck cancer who are caring for young children. J Adv Nursing. 2010; 66(6):1280–1290.
8. Payne D, McPherson KM. Becoming mothers. Multiple sclerosis and motherhood: a qualitative study. Disabil Rehabil. 2010; 32(8):629–638.
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11. Newby NM. Chronic illness and family life-cycle. J Adv Nurs. 1996;23(4):786–791.
12. Cummingham PJ, Miller C, Cassil A. Living on the edge: health care expenses strain family budgets. Res Briefs. 2008;(10):1–14.
13. Kane R, Priester R, Totten A. Meeting the Challenge of Chronic Illness. Baltimore, MD: Johns Hopkins University Press; 2005.
14. Blumberg S, Luke J. Wireless substitution: early release of estimates from the National Health Interview Survey, July-December 2008 .
15. Yoos HL, Kitzmann H, Henderson C, et al. The impact of the parental illness representation on disease management in childhood asthma. Nurs Res. 2007;56(3):167–174.
16. Lipstein E, Perrin JM, Kuhlthau KA. School absenteeism, health status, and health care utilization among children with asthma: assochronic illnessations with parental chronic disease. Pediatrics. 2009;123(1):e60-e66.
17. Rauch PK, Muriel AC. Raising an Emotionally Healthy Child When a Parent Is Sick. New York, NY: McGraw-Hill; 2006.
18. Pearce F. Prioritizing needs in the context of chronic illness. Aust N Z J Fam Ther. 2008;29(4):224–225.
19. Thastum M, Johansen MB, Gubba L, Olesen LB, Romer G. Coping, social relations, and communication: a qualitative exploratory study of children of parents with cancer. Clin Child Psychol Psychiatry. 2008;13(1):123–38.
20. Lubkin IM, Larsen PD, eds. Chronic Illness: Impact and interventions. 6th ed. Sudbury, MA: Jones & Bartlett; 2006.
© 2011 Lippincott Williams & Wilkins, Inc.