Session Four: How concurrent disorders affect family life

Partnering With Families Affected by Concurrent Disorders - Facilitators' Guide

Session Goals

Provide an overview of the ways families are affected by concurrent disorders.
Help participants identify specific areas in which their lives have been affected by concurrent disorders.
Highlight the importance of sharing experiences with peers and trusted health professionals.

Content Outline

Behaviour changes.
Relationship changes.
Increased responsibility.
Impact on caregivers.

Activities

4-1: Personal Impact Log
4-2: Preoccupation and Impact Quiz
4-3: Family Index of Concern Quiz

Leaders’ Notes

Beginning the session

Families need an opportunity to tell their stories. It can be more difficult to experience illness in someone you love than it is to have an illness yourself. Family members find this idea to be accurate, powerful and compelling. They often need validation of how draining the experience of supporting someone with a mental health and substance use disorder can be. They also need people to understand how much they love their ill family member and want them to recover or go back to the way they once were.

Researchers often use the term “caregiver burden” to describe the physical, emotional, financial and social effects of caring for someone with substance use and mental health problems. It is easy to use terms like caregiver burden without realizing the impact that this can have on caregivers, other family members and the ill family member. Many family members feel that the concept of burden ignores or cancels out the positive and rewarding aspects of trying to help their loved one. We used terms such as compassion fatigue rather than burden during this session. In fact, we discussed with the group members our experiences in using the term caregiver burden with families, and explained that we now use other ways to describe this phenomenon.

There are a number of scales that can be used to measure caregiver burden. If you use a caregiver burden scale or measurement tool to assess whether people’s perceptions and experiences improve over the course of the 12 sessions, you might also want to explain that, although you cannot ethically or legally change the name of an existing questionnaire or scale, you do acknowledge the implications of using this term.

A Fine Balance

Eastern philosophy thinks of health as balance. Energy is called “chi.” One of the ways to help balance the chi/energy in this session is to take a few minutes to go around the circle of participants, asking each person to talk about his or her ill loved one’s strengths. You can pose questions such as:

What is the one thing you love most about your ill family member?
What do you think is his or her greatest strength?

After you acknowledge how painful, exhausting and frustrating it can be to have a family member with concurrent disorders, you can ask:

What is the most rewarding part of your experience?
Has there been a positive aspect to caring for your ill family member?

We have found that group members deeply appreciate recognition of the rewarding side of the caregiving experience. This validation helps to set the stage for a discussion about the ways in which families are affected by concurrent disorders. Once group members begin opening up about the impact on the family, it can be a challenge to end the session after two hours. Because family members so often go unrecognized for their perseverance and courage and may even be blamed instead of rewarded for their efforts, they are often relieved to be given an opportunity to talk about their own pain and suffering and that of the other members of the family.

Personal Impact Log

We found that group members enjoyed completing the Personal Impact Log. However, some participants needed help with clarifying the objectives of this activity. Rather than having participants fill in the log on their own, you can ask them do the exercise as a group. For instance, go around the table asking each person to give an example of how they as a family member have been, or continue to be, affected by their loved one’s substance use and mental health problems. Remind the group that “impacts” may be positive as well as negative. You may choose to begin with one category such as how their physical health has been affected and then go through each of the other three sections of the log. Or you may suggest that each person tells the group how he or she has been affected in all four areas. Group members can use their completed logs when they develop their self-care plans (see Session 5).

Preoccupation and Impact Quiz

We developed this tool after realizing how profoundly caregivers and other family members are affected by their experiences. We decided to include the quiz in A Family Guide to Concurrent Disorders to help family members think about the degree to which this preoccupation had permeated their lives. This quiz has not been tested for reliability and validity. It cannot be used in a formal evaluation or research study. However, you may find it helpful in your own efforts to examine whether or not preoccupation is changed by participation in a family concurrent disorders education and support group. We plan to test the psychometric properties of this quiz in the future, and to make that formally tested measurement tool available to family members and health professionals.

Family Index of Concerns Quiz

Explain to participants that the items in this quiz may help them to identify areas that most concern them and to consider strategies that might help them resolve some of these concerns. Suggest that they think in terms of small steps that could help them make some changes in particular areas.

Ask them to circle the number that best corresponds with how they are feeling right now. Once they have completed all of the questions, suggest that they add them up to get their total score. The higher their total score, the more uneasy, worried or alarmed they are overall about their situation and the more they may need to focus on their own emotional, social and physical health and well-being.

This quiz can also help family members:

identify any personal areas of concern over which they have little (if any) control
consider how they might learn to accept what they cannot change.

Identifying areas over which one has little if any control and learning to accept these can be just as important as identifying areas of concern that are amenable to positive change. For example, family members may want their relative to stop using alcohol or other drugs, while the person may decide that he or she wants to cut down on their use, rather than stopping completely. This can be difficult for family members to accept. However, trying to force their relative to reach a goal that is of no interest to him or her can actually work in the opposite direction and result in an unwanted outcome. For example, he or she may resist being forced to act on a goal set by other people by using more drugs, turning to other sources of income to purchase those drugs, and withdrawing further from the family circle.

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