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Identifying Family Roles and Shifts in Responsibility During Illness

Introduction

Major changes in a family's usual lifestyle patterns may be required to accommodate the demands of caring for a loved one in the home setting. Unresolved conflicts and ongoing difficulties in relationships and communication patterns among family members prior to the stress of the illness may resurface. Family members need to know that the disequilibrium within the family is not unexpected and that problem solving approaches may prevent or defuse some family tensions.

Assessment

The following questions can be used to assess families' strengths and needs within the family system. Assessment of family roles, usual lifestyle, developmental level, authority patterns, and resources can be achieved by asking patients and family caregivers the following questions:

• Whom do you consider to be part of your family?
• What roles is the ill person relinquishing?
• Who is affected by the illness situation?
• What are the expectations of the family members?
• What are the family members' occupational patterns?
• What adaptations need to be made?
• Who are close friends and family in this system?
• What are the economic resources?
• Are there any other concurrent stressors?
• What childrearing activities are present?
• Are there other caregiving responsibilities?
• Who will participate in decision making?
• What is the patient's and family members' level of participation in religion?
• What does your spiritual tradition tell you about death and dying?

Intervention

Assist family members to identify how the illness has had an impact on their daily schedule. Ask the family members to identify what they miss the most about their old schedule (e.g. time for reading, going shopping, playing on a sports team, etc.). Ask the family members to identify how much time they would need to incorporate this activity back into their lifestyle. Have family members negotiate with other members of the family or friends circle to determine if some caregiving responsibilities could be assumed by another person for that period of time.

Assist family members to write a list of all necessary caregiving responsibilities and negotiate with others who is best suited to provide the care. Determine who can be relied on to provide these caregiving responsibilities as a "back up" relief person to lessen the burden on the primary caregiver(s).

Have family members evaluate how satisfactorily the relief or "back up" system is working after a one week trial. Assist family members to identify what is working and what needs to be reworked. Revise plan as necessary.

Advise parents that it is often helpful for teachers to know that children are dealing with serious illness in the home if there are school-age children in the family. This information sharing with teachers may alert teachers to potential changes in children's usual academic performance and social behavior, and may avert problems at school.

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