Mental Illness and Family Organizations Research Paper

WHO aims to achieve these objectives through a number of measures in both developing and developed countries. The organization plans to raise awareness of the relative importance of mental disorders as a major contributor to the global burden of disease in different groups, including health professionals and public health decision makers, and also among the general public. WHO will fight the social stigma, misconceptions, and discrimination associated with mental illness, as well as promoting the human rights of people with a mental illness: ‘Very often and in many countries, individuals who are affected by neuropsychiatric disorders endure double suffering, namely from the conditions themselves and from the social stigma and discrimination attached to them.’ (WHO 67 Press Release, Nov. 12, 1999—Raising Awareness, Fighting Stigma, Improving Care.) In December 2001, the 10th anniversary of the Principle for the Protection of Persons with Mental Illness and the Improvement of Mental Health Care adopted by the UN General Assembly in 1991, Dr. Brundtland proposed launching measures to foster the implementation of these principles with, for example, an International Convention on the Rights of Persons with Mental Disorders.

Mental health promotion should go beyond simply achieving the absence of a mental disorder, but aim to improve mental well-being, a state in which individuals can realize their abilities, cope with the stresses of life, work productively, and make a positive contribution. WHO has identified poverty as a great obstacle to such mental well-being. In both mental health promotion and in treatment and care Dr. Brundtland saw the family, often extended by the closest community network, as having a central role to play: ‘Much of the burden of caring for the mentally ill, or for prevention for those who are in danger of becoming ill, is left to the family …’ (Office of Director General, WHO, Oct. 13, 1999.) The family needed more support and better information, in recognition of their work. She commended the 1995 ‘Barcelona Manifesto,’ put forward by the European Union Federation of Family Associations of Mentally Ill People, which outlines the needs and perceived rights of the family of a person with mental illness, and would consider its principles in WHO’s work.

At a regional level, within the European Union, the Council of Ministers of Health has also focused on mental health, in particular the promotion of mental health within the context of improving social inclusion. It has invited the European Commission to analyze the impact of Community activities on mental health, for example, in the fields of education, youth policy, social affairs, and employment, and to consider the need to draw up—after consulting with member states—a proposal for Council recommendations on the promotion of mental health in the European Union.

2. User and Family Organizations Related to Mental Illness

There are organizations focusing on users and families’ concerns operating at a number of levels: global, regional, national, and within individual countries. Some organizations are run by users for users, while others involve mental health professionals. At a global level, the World Association for Psychiatric Rehabilitation and the World Federation for Mental Health each has an interest in the perspective of users and carers.

An example of a user-run organization at a regional level is the European Network of (ex-)Users and Survivors of Psychiatry, which describes itself as ‘a regional initiative to give (ex-)users and survivors of psychiatric services a means to communicate, to exchange opinions, views and experiences in order to support each other in the personal, political and social struggle against expulsion, injustice and stigma in our respective countries.’

The history of the Network goes back to 1990 when an initiative was taken in the Netherlands to form a network of associations of (former) psychiatric patients from various European countries. Since then the Network has organized four European conferences. At the last conference in Luxembourg in 1999 more than 90 delegates, all of them (ex-)users survivors from 26 European countries, met and created an action plan for the coming years.

The aims and objectives of the European Network are:

(a) The European Network is against any unilateral approach to, and stigmatization of, mental and emotional distress, madness, human suffering, and unconventional behavior.

(b) The European Network should support (ex-) users survivors’ autonomy and responsibility in making their own decisions (self-determination).

Priorities for the network include the following:

(a) Act against any kind of discrimination in society (both inside and outside the mental health care system) of people who have been subject to the psychiatric system;

(b) Support the development of (ex-)user survivor groups throughout Europe (with a particular emphasis on those countries where there are no existing organizations);

(c) Create and support new alternatives to the psychiatric system and collect and share information on the existing ones;

(d) Influence and try to change present treatment in psychiatry.

The European Network attempts to influence policy at a European level and maintains contacts with other international organizations active in the mental health field. The Network collaborates with the WHO Regional Office for Europe, the European Union, the European Disability Forum, the International Labour Organisation (ILO), Mental Health Europe Sante Mental Europe (the former European Regional Council of the World Federation for Mental Health) and the Geneva Initiative on Psychiatry.

The Network is a federal structure of national and local associations of (ex-)users and survivors and of mixed organizations with a significant (ex-)user  survivor membership. For countries where there are no such associations, exceptionally individual (ex-)user  survivor members may become members. The aim is for the Network to be a grassroots, democratic and fully (ex-)user survivor controlled organization. Through the membership of its member organizations the network represents several ten of thousands of (ex-)users survivors from across Europe.

In the USA during the last 20 years the National Alliance for the Mentally Ill (NAMI) has grown, with a membership now of over 200,000 family members and service users. It operates at a national, state, and local level to ‘provide the nation’s voice on mental illness.’ It represents family members and service users who seek more equitable services for people with a severe mental illness.

In Europe, voluntary organizations from a number of countries, which represent the relatives of people with a mental illness came together in DeHaan, Belgium in 1990. A manifesto signed by family associations from 10 European countries led to the establishment of the European Federation of Associations of Families of Mentally Ill People (EUFAMI) in 1992. At their third congress held in Sweden in 1999, 22 member associations from 15 countries—directly representing 55,000 families—set out their aim to work toward the reduction of stigma and discrimination against people with a mental illness and to seek adoption by health professionals of the highest standards of good practice.

3. Function of User and Family Organizations Related to Mental Illness

There are some descriptions of individual groups and programs available. One group focuses on issues of loss and how to overcome it (Baxter and Diehl 1998). The BRIDGES program and the Journey of Hope are peer-taught programs that offer education and support to people with a severe mental illness and their families. The aim is to validate the participants’ sense of loss as normal, and provide a structure for a new sense of self, so that individuals and their families can move from isolation and loneliness to empowerment and reconnection with ordinary life.

Families of people with dementia may have particular needs given the progressive nature of the illness and its increasing impact on carers as a person’s mental and also physical health declines. Support groups for carers allow members to trade information about the disease and daily care requirements (Wormstall et al. 1996).

4. The Relationship Between Family Organizations and Statutory Ser ices

Members of family organizations may be dissatisfied with the care provided by statutory services. Members of the Dutch organization Ypsilon, which supports the relatives of people with a long-term psychotic illness, took part in a questionnaire study. They reported a lack of access to treatment professionals, a lack of information about their relative’s illness, and a lack of family involvement in treatment planning (Schene and van Wijngaarden 1995).

In some family organizations, health professionals may be more involved. In Massachusetts, Alliance for the Mentally Ill (AMI) provide eight family support groups, with a total average monthly attendance of 86 relatives and 25 professionals (Bouricius et al. 1994). Family members lead the groups, but they encourage health professionals to attend. Results of a questionnaire given to the relatives showed that a large majority found the attendance of professionals at the meetings to be helpful in accessing needed services. The researchers also reported that the support groups tend to improve services for people with a mental illness in the area.

Across the USA there is a wide variation in the contact between doctors training in psychiatry and psychoeducational programs involving families of people with a mental illness. In less than half of the psychiatry training schemes is NAMI formally involved. Barbee et al. (1991) give some examples of successful collaboration. In one program, an exercise in which trainee psychiatrists and family members change roles is recommended for its ability to improve communication between trainees and families.

Such programs may have some effect in reducing the delay between a person being diagnosed as having a mental health problem, and family members getting in touch with a support organization. A survey in Quebec of AMI members found that half of the members experienced a delay of over two years and only 10 percent were referred to the organization by a psychiatrist (Looper et al. 1998). The majority of respondents would have preferred earlier contact, and some approved of the more proactive methods developed by AMI-Quebec such as a telephone call after a relative’s first admission to hospital.

5. Benefits of Involvement with a Family Organization

There is some evidence of family members gaining benefit from joining a support group. For example, in a study of 225 families with a relative with a mental illness, there were significant differences between those who participated in a support group and those who did not (Mannion et al. 1996). The support group participants were more likely to be a parent with a higher functioning relative who had been ill for a longer time. They reported less subjective burden, and a greater use of adaptive coping mechanisms than did members of families who did not participate in a support group.

It is possible to demonstrate that there are some ingredients of a group that are particularly helpful. A US study compared two types of group, an interactive psychoeducational model and a support model offering nonstructured discussions (Kane et al. 1990). Each was held over four sessions for the families of people with a relative with schizophrenia or schizoaffective disorder. In the psychoeducational group, over threequarters of the participants rated the quality of the information received as excellent, and 94 percent said they had received the kind of information they wanted. This compares with a quarter of the support group rating the information as excellent and none feeling that they had received the help they wanted. There was a lower level of depression in members of the psychoeducational group.

A study in Germany reported benefits for family members who joined a self-help group (SchulzeMonking 1994). In this case the families of men with a severe mental illness were most likely to join the group. Over the two years of the study, there was a tendency for the relatives of the families which participated to have a better outcome. Family members in the group developed more social contacts and reported fewer physical complaints.

As well as providing support and information about a relative’s illness, these organizations can fulfill a number of other functions. For example, in the Circle Model, family members caring for a relative who is cognitively impaired are enabled to get some respite (Jansson et al. 1998). Equal numbers of family members and volunteers train together in a study circle, and once trained, the volunteers can replace the carer on a regular basis in the person’s home. The relatives gained support from meeting others in the same position as themselves, and they also expressed feelings of security and relaxation in relation to their respite from the home situation. The volunteer caregivers also expressed satisfaction and appreciation of the knowledge they gained from the caregivers.

In many caregiving situations an elderly parent is looking after a grown-up son or daughter at home or providing substantial amounts of support out of the home. One of the biggest worries for the carer may be what will happen after his or her death. The Planned Lifetime Assistance Network (PLAN) is available in some parts of the USA through NAMI. It aims to provide lifetime assistance to individuals with a mental health problem whose parents or other family carers are no longer alive, or are no longer able to provide care (Lefley and Hatfield 1999).

Another area of growth outside the statutory sector is in self-help groups in the voluntary sector. Their focus is diverse and represents an interest in promoting self-help and support for people with a range of mental health problems including anxiety disorders, mood disorders, schizophrenia, and dementia. These groups are created and operate at a local, regional, and national level. Some have developed groupings at an international level whose main focus is to act as a lobby group and advocate for intergovernmental initiatives in policies around mental health.

6. Self-help Groups

In the USA, Borkman (1997) has linked the development of contemporary self-help groups with the founding of Alcoholics Anonymous (AA) in 1935. AA is a model for other self-help groups, which are also nonhierarchical direct democracies that avoid advocacy but focus on providing support. The major growth of all these groups took place during and after the 1970s alongside the development of the civil rights and women’s movements, both of which challenged bureaucracies and traditional authority.

To understand more about the people involved in self-help groups, Chamberlin et al. (1996), using a participatory action research paradigm, with an advisory committee of individuals who had used such a program, carried out a survey of participants in six representative programs. Respondents spent an average 15 hours per week in their program and had been attending for almost five years. Members both received and gave help. Overall they reported that attending a self-help program had a salutory effect on their quality of life.

Other organizations controlled by consumers or survivors may have different aims, carrying out different activities. Trainor et al. (1997) define consumer survivor organizations as being operated for and controlled and staffed by people who have used the mental health system. In Ontario, Canada, the Consumer Survivor Development Initiative funds 36 such organizations. They carry out a range of activities, which include offering mutual support, cultural activities, advocacy skills training, and education for the public and professionals. Involvement in a selfhelp group leads to a drop in contact with services, with less time spent in in-patient care, and less contact with crisis services, suggesting that contact with such groups may help individuals handle difficulties in a different way.

In the UK information from members of different user groups suggested that these groups could have a role in ensuring that individual users’ rights were respected (Barnes and Shardlow 1997). They also enabled people with a mental health problem to improve the accountability of services, and supported their wider participation as citizens.

Bibliography:

1. Barbee J G, Kasten A M, Rosenson M K 1991 Towards a new alliance: Psychiatric residents and family support groups. Academic Psychiatry 15: 40–9
2. Barnes M, Shardlow P 1997 From passive recipient to active citizen: Participation in mental health user groups. Journal of Mental Health UK 6: 289–300
3. Baxter E A, Diehl S 1998 Emotional stages: Consumers and family members recovering from the trauma of mental illness. Psychiatric Rehabilitation Journal 21: 349–55
4. Borkman T 1997 A selective look at self-help groups in the United States. Health and Social Care in the Community 5: 357–64
5. Bouricius J K, Kersten E, Nagy M, McCartney P L, Stein R 1994 Family support groups. AMI of western mass style. Inno ations and Research 3: 33–40
6. Chamberlin J, Rogers E S, Ellison M L 1996 Self-help programmes: A description of their characteristics and their members. Psychiatric Rehabilitation Journal 19(3): 33–42
7. Jansson W, Almberg B, Grafstrom M, Winblad B 1998 The circle model: Support for relatives of people with dementia. International Journal of Geriatric Psychiatry 13: 674–81
8. Kane C F, DiMartino E, Jimenez M 1990 A comparison of short-term psychoeducational and support groups for relatives coping with chronic schizophrenia. Archi es of Psychiatric Nursing 4: 343–53
9. Lefley H P, Hatfield A B 1999 Helping parental caregivers and mental health consumers cope with parental aging and loss. Psychiatric Ser ices 50: 369–75
10. Looper K, Fielding A, Latimer E, Amir E 1998 Improving access to family support organizations: A member survey of the AMI-Quebec alliance for the mentally ill. Psychiatric Services 49: 1491–2
11. Mannion E, Meisel M, Solomon P, Draine J 1996 A comparative analysis of families with mentally ill adult relatives: Support group members versus non-members. Psychiatric Rehabilitation Journal 20(1): 43–50
12. Schene A H, van Wijngaarden B 1995 A survey of an organization for families of patients with serious mental illness in the Netherlands. Psychiatric Ser ices 46: 807–13
13. Schulze Monking H 1994 Self-help groups for families of schizophrenic patients: Formation, development and therapeutic impact. Social Psychiatry and Psychiatric Epidemiology 29: 149–54
14. Trainor J, Shepherd M, Boydell K M, Leff A, Crawford E 1997 Beyond the service paradigm: The impact and implications of consumer survivor initiatives. Psychiatric Rehabilitation Journal 21: 132–40
15. Wormstall H, Gunthner A, Morawetz C, Schmidt W 1996 Groups for family caregivers of patients with Alzheimer’s disease in Germany. Ner enarzt 67: 751–6