Pamphlet #14a:

Support for Families

Beginning, Maintaining and Developing Family Self-Help

The need: coming to terms with schizophrenia

I didn't believe that this had happened to me. Mental Illness was the fate of poor, disadvantaged people, not me. Then I went to a support group meeting -- I was amazed -- there were families from all walks of life, many of them in circumstances similar to my own.

-- Inge, a mother

Being able to accept that a relative has schizophrenia takes time. People who have not experienced mental illness up close are embarrassed and fearful, just as the person with schizophrenia and his family are when it happens to them. They find it difficult to speak about the illness, because of their own emotions and because they are afraid of how people will react. They may also be the victims of their own prejudices about mental illness. Forced to examine their own feelings, they must take a critical look at their own values. Historically mental illness has been a reason for shame. Now that we know that schizophrenia is described as a chemical, sometimes genetic, disorder of the brain by the medical profession, there should be no reason for shame. Schizophrenia is an illness in the same way as is multiple sclerosis or cancer. Nevertheless, old perceptions die hard, and the family may have a great deal of difficulty admitting to themselves as well as to others that they have been affected by major mental illness. Until they can do this, the burden will be even greater.

Emotional and Practical Support

People involved with schizophrenia note that the family, most often the primary care giver, is under enormous stress every day:

Personal stress is something that often goes unacknowledged. The sick person becomes a priority, and we forget our own needs. The day to day tasks involved in caring for a dependent -- sudden crises, worry, financial problems, searching for community services, coping with bureaucracy, becoming an advocate, squeezing out precious moments for our other family members -- depletes and robs us of our energy. Eventually we end up with stress exhaustion, and this can lead to depression, anxiety, burnout, and psychosomatic illnesses.

-- Elenor Smith, Alberta Schizophrenia Society

Families and health care professionals caution that the strain of having a relative with schizophrenia can begin in the very early days, when the person's behaviour starts to deteriorate. Even before a diagnosis is made, families undergo unusual pressures coping with someone whose behaviour is becoming increasingly abnormal. After the illness is diagnosed it is entirely normal to have feelings of guilt, resentment, fear, anger, bitterness, shame and grief. The important thing is to learn to deal with these feelings.

Meeting with other families that share a similar experience has proven invaluable in easing the burden. There are support groups for families in many communities which were begun by and for families in need of help, and by professionals who recognise this need. They have been able to give each other great strength in dealing with their problems. Many groups have become more sophisticated and offer a wide range of services and programs to their members.

Beginning and maintaining a support group

Family Support Groups have remained the backbone of many of the self-help organizations which have grown out of them. They are an invaluable means of self-help which can augment services provided by professional care givers.

The groups provide participants with four broad opportunities:

the unique support, understanding and strength given by people who are experienced in caring for a person with schizophrenia
the chance to learn from the combined wisdom of others experienced in coping with day to day problems
the potential to make new friends when years of being a care giver has left people isolated
the encouragement and support to work towards improving the lot for both people with schizophrenia and their families

A support group may be set up by a professional in the field, who has patients whose relatives are interested in meeting other relatives. It may also be set up by a group of several relatives on their own. To begin with a group may be completely informal. A professional may lead the group to ensure that information provided is correct and to offer the advice of experience, until the membership is able to take over. Support of professionals will continue to be important - for special advice, material resources and for referrals to the group.

Holding Meetings

Obtain a central location (local community centre, service club premises, or church hall), which is easily accessible. Some groups prefer not to attend meetings in hospitals or clinics. Others feel that meeting in a hospital adds credibility to the meeting, or it may be that the group leader is a professional at the hospital. Meeting in someone's home is an option, provided that members of the group agree to alternate locations and no one family must host the meeting on every occasion.

The room should be pleasant with comfortable seating and privacy. It should also be possible to serve refreshments. Arrange regular meetings to be held on the same day each session (e.g. each Tuesday; the first and third Thursday of each month). People should be made welcome with enough seating. In a public location (e.g. church hall) the seats should be set up in a manner that invites communication (a circle is ideal).

The meeting will be the focal point of your group for while. It should last no longer than two hours. An informal ten minutes should be set aside at the beginning during which time the coordinator welcomes everyone at the door, helps create an atmosphere of trust and openness, and releases tension for newcomers who do not know what to expect. Members will then discuss their problems and offer advice to each other. A break for coffee should occur after the support session so that members can mix and exchange information. At the first meetings an interim convener/ chairperson and alternate should be selected, and members who wish to be further involved in the group may be appointed to open the premises, prepare the room, bring coffee, etc.

Objectives for the Meeting:

to recognise an atmosphere of confidentiality
to make participants feel sufficiently at ease to talk about worries about their relative without fear of criticism
to let members receive enough feed-back, by word or gesture, to know they have really been understood.
to recognise participants and give realistic praise for what they have achieved and how they have coped rather than to suggest what else might have been done
to allow participants to simply listen and absorb or rest, if that is what they need
to let participants experience feelings of hope -- realistic hope, in that even if there is little change for the person with schizophrenia, the family as a whole can learn to cope and lead a relatively satisfying life
to allow members to hear a variety of different solutions from ordinary people coping with similar situations; [none being of a dogmatic nature]
to let participants realize their experience and suggestions are very important. Care givers learn a lot through practical experience that is invaluable in augmenting professional treatment
to direct participants to a more appropriate group if this one is unable to help
to welcome new members and encourage them to speak, while first recognising that it is probably a particular problem that has brought them to the meeting
to enable participants to leave the meeting feeling substantially better than when he arrived, or at least, to make sure that there is an exchange of phone numbers or an address to visit for follow-up

The self-help group relies on the experience of members
more than on the knowledge of experts.

Consensus and cooperative effort are what are used to find workable solutions. People learn from each other, so that the behaviour of members, the group activity and the structure and setting of meetings will all have a bearing on the group's success. Compromise, humour and sensitivity to everyone will help develop an unwritten law of the group's conduct. Certain behaviours can disrupt the harmony. There can be: talking too much and too often; dominating; not listening, criticising, etc.. Identify these issues as they arise and resolve them. Sometimes it is only the anger, hopelessness and frustration of the person that brings forth this kind of behaviour.

The leadership style of the convener/ coordinator affects the meeting. Remember that the leader is not there to answer people's questions but to facilitate the discussion. She/he is an "enabler", someone who must recognize that each participant has his/her own needs and reasons for being there. Balancing the discussion; summarizing and clarifying points; keeping the group on topic, i.e. the well-being of the care givers; and giving everyone a chance to speak, these are the tasks of the convenor which will help the meeting run smoothly and amicably. The atmosphere created by these means also helps achieve the common goal of learning to cope, to understand and to better help one's relative.

Building Membership

After the support group has been meeting for some time further objectives may emerge. These may be:

to be better informed (about services, course of the illness, etc.)
to inform others

While continuing the support meeting, a regular information meeting may be arranged, and speakers invited (research scientists, social workers, psychiatrists, lawyers, etc.) Members wishing to provide written information may strike a committee to accomplish this task. Always remember that many members have very onerous burdens. They should not be coerced into activities they cannot handle.

Be sure to use the resources in your community: the Mental Health Association; the Lions, Kiwanis, Rotary or other service club; University, high school or college students (volunteers - can deliver and post advertisements); churches; pharmaceutical manufacturers; local businesses; police department; local politicians, philanthropists, etc.

Whatever character the group evolves, it must be well organized. People will be discouraged if information about meetings proves incorrect, or someone fails to unlock the door at the meeting hall. Members who cannot take part in developing written materials, may be very happy to be the person who telephones everyone to remind them about the meeting, or goes ahead of everyone else to open the meeting room and put out refreshments.

Formal groups with a board of directors are often better at complex tasks than at meeting emotional and personal needs of members. Decisions about finances or the running of the group should be made separately from the support meeting. Some groups arrange "executive" meetings before or after the support meeting to reduce meeting nights to a minimum.

Forming an Executive

When the size of the group gets to about twelve people it should be formalized by creating an executive. Not all the positions listed below are necessary at first.

Coordinator - Chairperson: calls meetings; recruits volunteers; represents the group at outside functions; ensures group sets up regulations and goals. This person needs good interpersonal skills to work productively with others. The coordinator's function at a meeting is to act as the leader of a democratic group with one all-important overriding concern: he/she must be sensitive to a very vulnerable group of people who are more than normally stressed, often with few or no supports; many of whom have lost the confidence to press for their concerns to be met.

Vice-coordinator - Vice Chairperson: chairs meetings in the coordinator's absence and therefore needs similar skills; represents the group at outside functions; prepares to take over coordinator's role at end of his term (this ensures continued leadership). Helps recruit members.

Secretary/ Treasurer: handles and keeps accurate records of group funds. Prepares financial reports. Is a signing officer for bank accounts. Takes minutes of the group's annual meeting. Keeps organized records of correspondence, reports, etc.; orders supplies. Keeps members well informed of activities in liaison with the coordinator. This job should be separated into two as the group grows.

Medical Advisory Committee: it is very important to have professionals on-side right from the start. Their support will add credibility and be invaluable in supplying medical knowledge. Enlist the support of at least two, preferably psychiatrists or psychiatric nurses, who have a particular interest in schizophrenia. They should agree with and champion the group's goals and objectives. These professionals will form the basis of a medical advisory committee.

Communications Officer: organizes telephone committee which keeps members informed of all meetings, etc.. This person writes the Public Service Announcements accepted by local radio stations and by local newspapers and the bulletins of the places of worship. Organizes a publications committee for the distribution of pamphlets, news sheets, etc..

Fund Raising officer: this person must feel comfortable contacting local businesses, etc. to obtain donations of supplies or funds for running expenses. Other duties may be small scale at first: bake sales, raffles, etc., and can only be done with the support and help of the members at large or a committee struck for the purpose.

Practical needs of your support group

A Telephone Line

At the beginning it is usually the convenor and his/ her alternate whose telephone number is given to members and which appears on any leaflet that is produced. This in turn generates more telephone calls until eventually it may overwhelm the person attending to it. A solution to this problem may be to install a telephone line and an answering machine (or answering service provided by the telephone company) so that calls may be attended to in time set aside for the purpose. Volunteers may take turns to return these calls. Alternatively, the group may find a location where member volunteers on rotation may answer the telephone and/ or receive families who have questions. The member volunteer force should not be over extended. Begin the service with only a few hours a week (e.g. Mondays and Wednesdays, 9:00 a.m. - 12:00 noon) and make this known to members and on the outgoing message on your telephone. It is not productive to have a telephone line that is inadequately manned, nor one where the volunteer is poorly informed.

A Volunteer Manual

As the experience of the group and its members grows, a store of information will evolve about local services. This information should be catalogued in a volunteer manual for easy reference, and the information noted by volunteers.

A Volunteer Orientation and Training Manual (and training)

At the beginning members exchange information and tips on coping with each other, but by the time a telephone line has been set up and people are coming to your organization asking for advice, it is necessary to formalize how and what information is supplied by the telephone volunteers/ staff and in what manner they do it. A training manual relieves the tension new volunteers/ staff experience and helps them orient themselves to how the group's office (services) function. In addition there should be a formal, but not necessarily very long, training period conducted by the chairman or support group coordinator.

A Log Book

A confidential record of each telephone call or visit should be kept in a log book bought for the purpose. This ensures that names, addresses and telephone numbers are not mislaid and that volunteers are always informed of any problems that have arisen and what solutions were found. The log book is particularly necessary because the telephone line and office may be manned by different volunteers each day and continuity of service must be maintained.

Reading materials

People attending meetings or personal interviews at your office or talking with office personnel on the telephone like to take away materials to read afterwards. This helps them digest what has been discussed. In addition, this material is a guide for volunteers who are designated to give advice. Thus, most organizations develop their own materials with the help of professionals. These should be numbered and reproduced in sufficient numbers for the group.

Growing Bigger

Sharing with Other Self-Help Groups

As groups become stronger they wish to share the knowledge and the benefits of family self-help and support with others. From the beginning -- when one group splits into two -- grow local, provincial, national, and international bodies.

Adding a Website and email address

In areas where a lot of people have computers it is very possible that you have someone competent on the internet in your group. Websites are not difficult to establish and one of your members may find it rewarding to develop an interesting and informative site that the general public may access. A one page website may grow into a many faceted library of reference material as your organization develops

The Emerging Roles of Family Self-Help Groups

Self-help groups for families coping with a relative with schizophrenia are somewhat unique. They help themselves while at the same time promoting the well-being of others who cannot help themselves - their loved ones. The focus of such groups must retain a balance between these two objectives. As family groups grow and strengthen, they develop new objectives in advocacy and education. Goals for such organizations may include the following:

to identify the needs of families affected by schizophrenia and respond by providing emotional support, problem-solving and coping skills, information and practical help.
to clarify the relationship between families and medical professionals.
to provide individuals with a clear understanding of schizophrenia, treatment programs, and the choices available at various stages of the illness.
to provide family members with education about schizophrenia
to advocate for improved mental health laws
to advocate for more funding for research to find the cause, better treatments, and the cure for schizophrenia
to reduce the stigma associated with mental illness by educating and informing the public
to advocate for better services for the diverse needs of people with schizophrenia in all areas, including direct health care (acute and long term), housing, occupational therapy, recreational programs, employment programs, etc., and to encourage and support innovative ideas in these areas
to provide facilities such as drop-in centres, housing and recreational programs*
to provide respite care for families, exhausted from the task of care-giving*
to provide grief counselling for families where the severity of the illness has robbed them of the former personality of their loved one and where the relative has been a victim of suicide.

Some family organizations have determined that to provide services will sap the limited strength of their members, volunteers and staff. Other family organizations have determined that this is the path they wish to follow and have developed funding policies and missions in order to accomplish this. Some organizations decide that support, advocacy and provision of services are all laudable aims for a family organization. To make sure that they focus on each aim, some organizations require that members wishing to develop direct services create a new affiliated organization to better focus on the task at hand.

Publications