4.6 Psychosocial Effect of Illness on Client and Family Health

When one member of a family is ill, it often affects many members in the family. For example, when a child needs ongoing health care, parents may manage a medication regimen, take the child to appointments, use financial resources, and provide care. Siblings may need to help care for the child and may feel as if their own needs are not being met or valued at the same level. They may also adopt some roles mentioned earlier like the lost child. In addition, when a family member has a substance use disorder, others in the family may enable, ignore, assist with care and concern, and/or use financial resources. The next section describes family caregivers’ roles and activities when a family member is ill.

Family Caregivers and Caregiver Role Strain

Family caregivers provide regular care or assistance to a family member who has a chronic illness or disability. Caregiving may include assistance with activities of daily living such as bathing and dressing, paying bills, shopping, and providing transportation, as well as providing emotional support. Caregiving responsibilities may increase and/or change as the recipient’s needs increase, which can result in additional strain on the caregiver.^[1] Caregiver role strain occurs when the caregiver feels difficulty in performing the family caregiver role.

A substantial portion of unpaid care for children, parents, or spouses with chronic disease or disability is performed by middle-aged and older adults. In the United States, 22% of adults reported providing care or assistance to a friend or family member in the past 30 days. Additionally, 10% of caregivers reported providing care or assistance to friends or family members with dementia or other cognitive impairment disorder.^[2] Approximately one quarter of dementia caregivers are also “sandwich generation” caregivers, meaning that they care not only for an aging parent, but also provide care for their children under age 18.^[3] See Figure 4.11^[4] of an image depicting a daughter who serves as a home caregiver of her mother with dementia.

Caregiving can bring great satisfaction to the caregiver and strengthen family relationships, thus enhancing the caregiver’s quality of life. However, caregiving can also affect the caregiver’s ability to work, engage in social interactions and relationships, and maintain good physical and mental health. Nurses must assess for physical and mental health burdens on caregivers and assist them in maintaining their health.^[5]

Nurses should monitor family caregivers for these symptoms of stress resulting from providing care^[6]:

• Anger at the person diagnosed with the chronic disease or disability or frustration that the person can’t do things they used to be able to do.
• Social withdrawal from friends and activities.
• Anxiety about the future and facing another day. For example, the caregiver might say, “What happens when they need more care than I can provide?”
• Depression or decreased ability to cope. For example, the caregiver might say, “I just don’t care anymore.”
• Exhaustion that makes it difficult for them to complete necessary daily tasks. For example, the caregiver might say, “I’m too tired to prepare meals.”
• Sleeplessness caused by the care or concerns about the family member’s condition.
• Irritability, moodiness, negative responses, or lack of concentration that makes it difficult to perform familiar tasks. For example, the caregiver might say, “I was so busy; I forgot my appointment.”
• Health problems that begin to take a mental and physical toll. For example, the caregiver might say, “I can’t remember the last time I felt good.”

Nurses should monitor for signs of caregiver stress and provide information about community resources. Community resources available for clients with chronic illness or disability may include child or adult day care, respite care, residential facilities, or palliative care. Adult day centers offer people with chronic illness or disability the opportunity to socialize and to participate in activities in a safe environment, while also giving their caregivers the opportunity to work, run errands, or take a break. Respite care can be provided at home (by a volunteer or paid service) to provide the caregiver a much-needed break. If the person with chronic illness or disability requires more care than can be safely provided at home, a residential facility may be an option to consider. Palliative care provides care and support services for people in end stages of chronic illness who want to be selective about the type of care they choose.^[7]

Caregivers should be encouraged to take good care of themselves by visiting their health care provider, eating well, exercising, and getting plenty of rest. It is helpful for nurses to remind caregivers that “taking care of yourself and being healthy can help you be a better caregiver.” It is also helpful to teach them relaxation techniques, such as relaxation breathing, progressive muscle relaxation, visualization, and meditation.^[8]

Family Therapy and Support

Nurses are aware some client situations warrant additional assistance for the entire family. Nurses assist clients and their family members to identify and access support services when promoting wellness, recovery from illness, and management of chronic diseases. For example, if a client is diagnosed with a substance use disorder (SUD), the nurse may recognize the entire family may benefit from counseling and support. Family therapy focuses on family relationships and interaction patterns and assists family members to amend dysfunctional interaction patterns.^[9]

Nurses also assist families to access community support groups. For example, Al-Anon and Nar-Anon are free peer support groups for people who have been affected by a family member’s SUD. Another example of community support is Sibshop, which can promote coping in siblings of children with disabilities in a fun and educational way. With Sibshop, families and children can interact with peers who understand their unique challenges.^[10] Use the information in the following box to find support groups in your community.