“What Do Families Want?”
Assessing the needs of those with a family member with a mental illness
Chris Summerville, D.Min; CPRP
Executive Director, Manitoba Schizophrenia Society
Once we began to realize that the [person with mental illness] is not the only affected person, it became clear that for any kind of normalcy to be regained (or gained for the first time) everyone in the family system must be seen as either part of the problem or part of the solution. –Earnie Larson
- Starting at a good place.
- Ask: “What do families want?” Paul Carling. Listening for/to “The family experience.”
- The seven reports on “best practices” for B.C.’s Mental Health Reform include “Family Support and Involvement.”
- One of the five goals for Mental Health Renewal in Manitoba developed in 2002 is to continue to enhance and expand the role of family members and other natural supports in the mental health system. “Family members and other natural supports are included in the planning and evaluation of services and initiatives.” (2004)
- Family members are the single largest group of caregivers in any particular community in Canada. (Building a Framework for Support, 1999).
- Goals of this “deliverable”:
- To offer support to family members and other natural supports.
- To enhance opportunities to work towards authentic working relationships between consumers, family members, other natural supports, service providers, mental health managers, system planners and policy makers.
- To improve the quality of service and consumer satisfaction through effective mental health service planning, implementation and evaluation.
- Family members need a feeling of being valued and included.
I. Why This is Important?
This mental illness business affected all aspects of my life—self-esteem, trust, intimacy, and hope. It was like a large cloud had moved over our heads and everyone was paralysed for years. My parents were so consumed in their own drama that they had little energy or time for us children. I often felt as if I were in the middle of a game for which no one bothered to explain the rules. Gradually, I froze up emotionally. Life lost its color, and I lost my spontaneity and joy. –Rex Dickens
A. Mental Illness has a devastating effect on the family unit/system.
1. Creates a crisis.
2. Produces chronic stress.
3. Surfaces subjective (grief, loss, sorrow) and objective (illness, caregiving, mental health system, stigma) burden.
4. Demands a new role(s) as primary caregiver (caregiver, project manager, collaborator, historian, educator/teacher, supporter, advocate and researcher).
5. Undermines their own health, financial resources and ability to cope.
6. Creates unrealistic expectations on the family.
7. It’s all about the family’s mental health!
B. Family members are on a journey of recovery as well.
1. Recovering from what?
2. What does that process and its phases look like?
3. What resources are available to facilitate recovery for families?
4. How do you balance the two: consumer empowerment and family?
C. The negative effect of mental illness on the family can hinder the stability and
rehabilitation and recovery of the person with mental illness.
1. Environmental stress a trigger of relapse.
2. High expressed emotions can be a factor.
3. The role of family involvement is part of the healing process and psychosocial rehabilitation philosophy and practice.
4. The way families are treated/responded to can contribute to the rehabilitation and recovery of the family member: empower, reduce level of stress, promote mental health, reduce rate of relapse, etc.
D. Service providers are uncertain of their role and frustrated by the confusion around “confidentiality “issues (cited as a frequent barrier to effective communication and support).
1. Understanding the needs of the family and how to address them are important.
2. Work from a strength-based approach rather than “families are a burden.”
3. Skills and competencies are needed.
4. Training of mental health professionals is a must.
“Indeed, numerous studies have shown a dramatic difference between professionals’ perceptions of what families need and the families’ own perception of their needs.” (Hatfield, Fierstein & Johnson, 1982; Skinner, Steinwach & Kasper, 1992; Spaniol & Zipple, 1988a).
E. The best advocacy comes from informed advocates!
- ‘You can’t impart what you don’t possess.”
II. What Do Families Need? (Spaniol, Zipple, Marsh, Finley 2000)
"All family members are affected by a loved one’s mental illness. The entire family system needs to be addressed, to assure us that we are not to blame and the situation is not hopeless, to point us to people and places that can help our loved ones. I was not informed by anyone what my mother actually suffered from. I endured a lot of unnecessary emotional pain. The impact still lingers on.” -anonymous
A. They want and need and deserve INFORMATION.
- Psychiatric diagnosis.
- Etiology of psychiatric disability.
- Treatment of psychiatric disability.
- Prognosis of psychiatric disability.
- Reasons for acute decompensation.
- Knowledge of the mental health system and services (housing, income security, etc. as well).
- Knowledge of the hospital setting and how to deal with providers.
- Ideas on how to prevent a relapse.
- Patient safety (from blaming to learning)
- Complaints mechanism.
- Paradigm of bio-psycho-social-spiritual-recovery-empowerment perspectives.
- Recovery from psychiatric disability.
- The role of family members in recovery.
- Realistic expectations from the family member with mental illness.
- Meaning and causes of symptoms.
- Availability of resources and supports.
- Sources of personal stress and burden.
- Family recovery process.
- Building personal resilience.
- Meeting the needs of younger family members.
- Developing healthy coping (adaptation) strategies.
- Dealing with personal stress and burnout.
- Availability of family/consumer self-help/advocacy groups.
- Psychological support services
- Legal issues, e.g., patient rights, trusts, estate planning, privacy issues/acts and the Mental Health Act.
- Criminal Justice Issues (Diversion Programs).
- Respite care.
Yet: 49 % of families surveyed are DISSATISFIED with information about psychiatric disability provided by practitioners. (Too vague, incomplete, contradictory, none given) 57 % report that practitioners do not adequately ASSIST them to understand the psychiatric disability.
B. They want and need and deserve SKILL DEVELOPMENT.
- Coping skills.
- Dealing with loses and grieving.
- Understanding the illness/mental health challenges.
- Assertive skills.
- Crisis Response skills.
- Communication skills.
- Stress management skills.
- Self-care skills.
- Symptom/problem behaviour management skills.
- Accessing housing and support services.
- Understanding the Mental Health Act, PHIA, etc.
- Engaging meaningfully/capacity building
- Collaboration skills.
- Negotiating skills.
- Estate planning skills.
- Educational skills.
- Advocacy and organizational skills.
C. They want and need and deserve SUPPORT.
- Family support groups and advocacy groups: CMHA, MSS, ADAM, MDAM, EDAM, OCSC, etc.)
- Supportive practitioners.
- Training of mental health professionals.
- Continued involvement with supportive practitioner.
- Partnership in “treatment planning” (the response, discharge, family readiness and ability to care for, etc.).
- A role in mental health policy.
- Diversionary Programs.
- Meaningful involvement in planning, implementing and evaluating mental health services, etc. (a voice.)
- Increased public awareness and mental literacy in combating stigma and discrimination
- Respite care.
- Advocate’s Office
- How well are we addressing these needs, wants, and issues?
- What supports and services are now available?
- What literature, books, videos, resources, workshops, training, and conferences are available for families….. and for professionals?
- What capacity building initiatives are provided for family members?
- Where and how could CMHA, MSS (and others) and RHAs collaborate on joint initiatives?
- How serious (passion!) are Manitoba Health and the RHAs in implementing the deliverable of meaningful family engagement (strategy and resources and training)?
B.C.’s Mental Health Reform Best Practices: Family Support and Involvement. British Columbia Ministry of Health. (report, no date)
Family Member and Natural Support Participation in Mental Health Service Planning, Implementation and Evaluation. Manitoba Health, Mental Health Branch, 2004. (a deliverable paper)
The Role of the Family in Psychiatric Rehabilitation. Spaniol, Zipple, Marsh, and Finley. Center for Psychiatric Rehabilitation. Boston University. 2000. (a workbook)
What Professionals Need to Know About Families. LeRoy Spaniol. Center for Psychiatric Rehabilitation, Boston University and the Massachsettes NAMI/DMH Curriculim, Training and Praqctice Consortium, 2004. (CD Rom).
Troubled Journey: Coming to Terms with Mental Illness of a Sibling or Parent. Marsh and Dickens. Putnam, 1997. (a book).