Will Talking about It Make It Worse? Engaging Patients’ Families around the Impact of Illness

Treating Families Coping with Illness

The Center for Families and Health at the Ackerman Institute specializes in treating families, in which the presenting problem relates to the chronic or terminal illness of a family member.

In doing this work, members of the Center realized that families often have a sense that talking openly about the illness will be detrimental to both the family member’s condition and to the relationships within the family. As a result, family communication is disrupted or suppressed.

The goal of treatment is to open pathways of communication and restore healthy family relationships and coping mechanisms.

Family Belief System

A family’s belief system is the basis for the way a family copes with the illness of one of its members. Understanding the family belief system is the key to effective work with a family coping with illness.

Qualities of the family belief system to keep in mind:

• The family belief system is informed by the social location of the family, in terms of the members’ positions of power and privilege in the larger societal system, which relate to factors such as ethnicity, age, immigration, education, occupation, and class. The interaction of these social factors impacts the way a family defines and manages an illness.
  • Moreover, the interplay between a family’s and a therapist’s differing social locations affect their work together. The therapist needs to (1) maintain an awareness of the family’s and her own social location, and how the differences between the two might impact their work together, and (2) acknowledge this openly with the family.
• The family belief system influences how an illness is interpreted and guides health-related behaviors. At the time of diagnosis, a primary developmental challenge for the family is to create meaning for the illness that promotes a sense of competence and mastery in the context of partial loss or possible further physical decline. The social worker should be aware that the family belief system:
  • Informs family conversations, in terms of who talks to whom in a family, which can be influenced by gender, generational boundaries, and power dynamics;
  • Affects what type of medical treatment is sought, i.e., traditional vs. non-traditional/alternative treatment, positive vs. negative view of participation in clinical trials;
  • Influences issues of secrecy and taboo, as well as beliefs about what causes an illness; and
  • Impacts family rituals. For example, basic family rituals, such as eating dinner together, which can have a normalizing effect on the family, tend to be abandoned when an illness enters the family system.
• There may be different or oppositional belief systems operating within a family or couple, which are generating systemic conflict and interfering with coping mechanisms. The social worker can better understand a family’s coping mechanisms by first understanding the family’s belief system. Then s/he can intervene more effectively by, for example, encouraging increased communication or the reintegration of abandoned family rituals.
• The family belief system is also influenced by the family’s experience with macro systems. The social worker is encouraged to interview the family members about their experiences with larger systems, in particular the medical community, to determine what has gone well for the family, and what they wish had been different. The worker can then use this information as a blueprint for how the family can best interpret and navigate their way through family therapy, the healthcare system, and other macro systems.

The Ackerman Relational Approach (ARA) to Treating Families

Basic elements of the ARA:

• Collaborative Stance. The therapist invites the family’s expertise – i.e., family members are the experts on their family, while the therapist is the expert on treatment.
• Transparency. The therapist shares her thinking and hypotheses with the family, asking if her hypotheses resonate with family members and dropping those that do not.
• Strengths-Based Model. The family often comes to therapy with a problem-saturated narrative. While validating the family’s experience, the therapist offers an alternative, strengths-based narrative, exemplifying resilience within the family system.
• Both/And Thinking (rather than either/or). The therapist holds the multiple perspectives of family members at once, so that each person in the family system has a say in what they believe causes the illness and how it should be treated. The therapist looks for areas of overlap, as well as how/where differences are tolerated; these are openings where the therapist can introduce change.
• Social Justice. Underpinning all the work is the therapist’s being mindful of the systems of social oppression that affect many of the families that we encounter.

Questions to Keep in Mind during the Family Interview [1]

• How do you think other "normal" or "regular" families would deal with a situation similar to yours?
  • By asking this question, the social worker gets a sense of whether the family knows any other families going through something similar, and to whom they compare themselves. This validates their experience. If they do not know any other families going through a similar situation, the social worker may want to refer them to a multiple family support group, to anchor, normalize, and validate their experience.
• How would a "healthy" family cope with a situation similar to yours?
  • Sometimes families have an idealized vision of how a "healthy" family would cope with the same situation, and the social worker can use this question to deflate this vision and normalize/validate the family’s own experience.

Components of Clinical Practice

Suggested interventions:

• Illness Narrative. Ask each family member how they learned about the illness, who told them and how, whom they told, and how this story has impacted family relationships. It’s important to get this in the first or second session.
• Illness Genogram. With the family, create an illness genogram that highlights the dynamics of the illness, by tracking the patient-caregiver relationships, illness narrative communications, and inter-generational patterns of illness, trauma, and resilience.
• Validation. Validate the family’s experience, using a collaborative and family-as-expert stance.
• Social Location of Self. Maintain cultural awareness and sensitivity to the social location of the family and yourself.
• Family Pictures. Have the family members bring in pictures to generate story-telling and give a voice to members who are not there, due to illness or death.
• Family Rituals. Ask the question, "What was a typical day like for your family before the illness, and what is it like now with the illness?" Look for what has stayed the same, and what the family has given up that perhaps they can bring back into everyday family life.
• Self-care. Don’t forget to take care of yourself, in order to promote self-awareness and avoid burn-out.

Referrals

Access our Family-Focused and Related Community-Based New York City Agencies referral list.

References

1. Rolland, J. 1994. Families, Illness, and Disability: An Integrative Treatment Model (Basic Books: New York)

Lisa Lavelle, L.C.S.W. is a faculty member at the Ackerman Institute for the Family and a member of Ackerman’s mentoring group and the Center for Families and Health. In 2001, she received the Carl Kempner Award for her outstanding work in family systems and physical illness, and she was the recipient of the Maslow Teaching Fellowship in 2002.

Posted: 4/24/2012

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Summary by Kathryn Klingenstein, LMSW, Social Work Coordinator, Early RA Support and Education Program