Approximately 35.3 million Americans, young and old, are limited in their daily functioning because of a chronic mental health or physical health condition. For the vast majority of these individuals, family is their first line of healthcare. Whether the member is a child with cystic fibrosis or an adolescent with diabetes, or a parent with multiple sclerosis or a grand parent with Alzheimer's disease, it is the family, first and foremost, that cares for an ill loved one.
One member's chronic illness influences the lives of everyone in the family. Roles and routines change. It may seem as if the medical professionals that care for the ill family member become part of the family. The demands of caregiving must be negotiated. Family members' emotions may be on a continuous roller-coaster ride. On the other hand, families may come together and grow closer. Their lives may take on new meaning. They may find rewards they had not expected on their journey through illness. The only certain thing is that chronic illness is a family experience, one that is shared by all.
How can chronic illness affect the family?
There are several ways that chronic illness can influence family life:
- Daily routines may change because the limitations of the ill member and the demands of treatment may require that others be more available.
- Families may need to share caregiving responsibilities; this helps all members feel they are contributing to a loved one's welfare and it also protects any single member from caregiver fatigue.
- Family members may experience strong emotions, such as guilt, anger, sadness, fear, anxiety and depressed mood. These are normal reactions to stress. It is useful to talk about these emotions within the family.
- The ill member may need to find ways to be as independent as possible, given the limitations that the illness causes.
- Despite the demands of the illness, families may need to work hard to maintain a sense of "normal" life. This can benefit the ill member, as well; it may help him or her integrate into family life more and may reduce the ill member's sense of guilt regarding the demands the illness places on the family as a whole.
When should the family seek help?
At any time during the life of a chronic illness, family members or the family as a whole may need support from a trained professional, such as a Marriage and Family Therapist (MFT). Signs to watch for include:
- Difficulty making the transition from the demands of one phase of an illness to another. For example, family members may remain overprotective of the ill member long past the crisis phase. The ill member may feel he or she is being overly controlled and may rebel by not complying with treatment or medication, or becoming angry with family.
- Evidence of caregiver burnout. Oftentimes, caregiving falls to a female member of the family who may become exhausted by the 24 hour per day demands of the illness. The primary caregiver may be hesitant to ask for help, feeling that it is her responsibility. But she may also show signs that may be a call for help: sustained exhaustion, shortness of temper, depressed mood, loss of interest in daily activities, and changes in sleep or eating. These may indicate that the caregiver needs more support and the family needs to become more involved in caregiving.
- Changes in the ill family member. These changes may be related to illness or personality changes in the ill member. A sudden decline in the health status of the ill member may send shock waves through the family. The ill member may also experience periods of depression, even thoughts of suicide, which are common with persistent illness.
- Stress or conflict among other members of the family. Well siblings may experience problems in school. An adolescent may act out when a parent is ill. A couple may be in conflict when a child or parent is suffering. Family members may develop physical symptoms that are similar to those of the ill family member.
In any of these circumstances, the family's primary care provider can act as a resource for referring the family to a family therapist who is experienced with illness and collaboration with medical professionals.
What kinds of interventions are commonly used?
Families seeking help can expect a variety of useful interventions:
- Family Therapy: It is valuable for the whole family, including the ill member, to meet with a qualified Marriage and Family Therapist. During sessions, the therapist can help the family discuss how they are dealing with the illness, make decisions together, and learn how to utilize their own internal strengths and resources to address interpersonal problems. Family therapy sessions may also include medical professionals who are involved with the ill member's treatment. This provides an opportunity for clarification of treatment and other issues, such as reasonable expectations for the future functioning of the ill member.
- Multi-Family Group Psychotherapy: Families can benefit from meeting with other families who are also dealing with chronic illness. These family group meetings are usually time limited (8-12 weeks) and include an educational component as well as discussion and problem solving.
- Individual Assessment and Treatment: Some family members may be experiencing symptoms of depression or anxiety that need to be addressed through individual assessment, appropriate medication, and individual therapy in conjunction with family therapy.
- Support and Psychotherapy Groups: Many organizations offer support groups that focus on a specific illness. These groups are a valuable addition to family and other forms of therapy. For persons needing more support, group psychotherapy is often also available.
Text provided by David Seaburn, PhD.
Use the AAMFT Consumer Update "Chronic Illness" pamphlets to market your practice.