Stroke Support Groups

Stroke support groups play a crucial role in stroke rehabilitation and recovery.

PEOPLE have traditionally provided support for one another, especially when there are challenges. The classic example is the extended family. Whenever there is an event, especially an adverse one, relatives come together to provide assistance and support for the affected person.

The support can be material or non-material. It is often of a varied nature and can be emotional, financial, information, etc.

However, modern day life has seen the dismantling of the extended family in many societies. This has contributed to the formation of support groups.

A support group is one in which the members provide assistance to one another for a specific purpose, which is usually problem-based. The assistance may include the sharing of personal experiences, considerate support, provision of information and care, and establishing social interaction.

A support group has to be distinguished from other groups. The former involves contact between peers, eg people with a health condition. The latter involves the support of causes, eg politics, environment, employment, etc.

There are various types of support groups. In the case of health conditions, they provide for the sharing of experiences, information and services as well as play an advocacy role.

Support groups maintain contact among its members through personal contact or print and electronic media. Membership can be informal in that it is open to anyone, or formal with admission requirements.

Many support groups are managed by its volunteer members who have personal experience of the group’s objectives. Other groups are managed by professionals who do not have the problems of the members of the group, eg healthcare professionals. The professionals provide information and services as well as assist in the determination of the activities of the groups.

Life changes after a stroke

Life changes after a stroke as it markedly affects the survivor and his or her family, who are usually the caregivers. The survivor may experience difficulties with the activities of daily living, eg talking, eating, walking, writing, driving, etc.

The survivor’s relationship with the caregivers, who are usually family members, may change. Caregivers may be confused, upset and isolated. They may be angry or guilty about their feelings towards the survivor, who takes up much of their time and energy. The inevitable changes in family relationships and responsibilities require adjustments from the family members and caregivers.

Stroke survivors and their caregivers require assistance in adjusting to the changes in their lives. Every stroke survivor’s needs are unique. The survivors face new disabilities and possible medical complications, and need to prevent recurrent strokes.

Despite their disabilities, the dignity of stroke survivors needs to be preserved. It is a fact that social support is vital to recovery from a stroke.

The sharing of experiences with other stroke survivors and their caregivers enable all those involved to address their common concerns, provide support, and facilitate the finding of practical solutions.

Survivors can be motivated to rebuild their lives in an atmosphere of caring and emotional support. In the process, new friendships and goals are started.

Stroke support groups

Stroke support groups are informal but structured groups that provide a forum for sharing in an atmosphere of understanding and encouragement that meets the specific physical, emotional, educational and social needs of survivors and their caregivers.

This renews hope, encourages survivors to uncover their hidden and untapped strengths, as well as promotes good health and quality of life.

The issues that are usually covered or provided by a stroke support group include its goals and plans; information on the prevention of recurrent stroke; information on rehabilitation, including adaptive equipment; travel information; discussions of individual physical and emotional issues and concerns, sometimes in small groups; discussions of stroke-related communication problems; advice on exercise and nutrition; motivational talks; educational materials; activities of the group; and suggestions of new topics or ideas.

The leadership in stroke support groups is vital for its success. The leaders are usually dedicated healthcare professional(s) or highly motivated stroke survivor(s), who are dedicated, enthusiastic, empathetic, pragmatic, and well organised.

Whilst common experiences and challenges will help in creating bonds, the process needs to be assisted by the leader(s) or facilitator(s). Careful word choices, institution of group guidelines and good listening skills are crucial in this process.

Successful stroke support groups are adaptable, have structured meetings, have educational programmes and social activities, challenge the stroke survivors, encourage group discussion and peer support, and provide assistance.

There are various local stroke support groups. A prominent one is the National Stroke Association of Malaysia (NASAM), which was founded in 1996 after the publication of its founder chairperson’s recovery from a stroke in an English language newspaper in 1995.

The response from other stroke survivors and their caregivers led to monthly meetings that evolved into weekly physiotherapy sessions and other activities for stroke recovery and rehabilitation.

The twin objectives of NASAM are to provide rehab services to enable stroke survivors to return to as normal a life as possible within the limits of their disabilities and to promote the concept of stroke prevention by raising public awareness on the risk of stroke.

NASAM has centres in Petaling Jaya, Ampang, Penang, Ipoh, Malacca, Johore Bharu, Kuantan and Kota Kinabalu.

Another prominent stroke support group is the Kiwanis Club. The first club, the Kiwanis Club of Kuala Lumpur, was established in 1976. The club launched its Stroke and Neurological Rehabilitation Centre in Petaling Jaya in 2005. The centre provides services to “maximise recovery for individuals with stroke, spinal cord injury, Parkinson’s Disease, prevent complications, and to assist the survivor towards independence with confidence and dignity. With improved physical independence, the survivor can participate fully in family, social and vocational pursuits.”

Internet support groups

The internet has provided fora for support groups. Computer-assisted communication has the potential of facilitating the discussion of private and personal issues.

Several studies have examined the utility of the Internet in providing social support, especially to groups with chronic health problems like stroke. In addition to the sharing of information, there are reports that the community has helped survivors cope with their conditions and disabilities.

Internet support groups are appealing for a number of reasons. The social distance between the members of the group reduces embarrassment, and the anonymity increases the confidence in the provision of support to others. Comments and suggestions can be edited before they are sent. These characteristics are absent in support groups in which a member is present in person.

Another advantage is that the participation is asynchronous, ie all members do not have to be logged in simultaneously. A question or an experience can be posted for others to answer or provide input whenever they log in.

As such, participation in the support group is not dependent on time constraints.

The disadvantage of internet support groups is that information is provided in a haphazard manner, often based on personal experience, which may not be scientific. The group dynamics of such groups are different from groups in which the stroke survivors and their caregivers are present in person.

Some groups may be invaded by sympathy seekers who fabricate illnesses to gain sympathy, and in the process, may impact upon the group. Finding reliable internet stroke support groups can be challenging as they utilise various modalities, eg worldwide web, email, social media.

The jury is still out on the effectiveness of internet support groups. There are many studies on the content of such groups, but what matters is the effect that involvement has on the individual. Research in the latter has not been substantial and conclusive.

The choice of a good internet support group is challenging. It is essential for stroke survivors and their caregivers to be aware of their limitations. The credentials of the sponsors of the group would provide guidance on the usefulness of the information and support.

Stroke associations and service clubs are more likely to be reliable. It would be prudent to scrutinise closely the groups that are sponsored by individuals or promoters of particular products for treatment or rehabilitation of stroke.

A stroke leads to substantial life changes for the survivor and his or her caregivers. The stroke survivor needs support, hope and encouragement. Stroke support groups play a crucial role in stroke rehabilitation and recovery. The issues that are covered or provided by such groups are usually the same worldwide.

Although there are potential advantages in internet support groups, there are also disadvantages, with the jury still out on the effectiveness of such groups. The choice of a good internet support group poses particular challenges.

Dr Milton Lum – is a member of the board of Medical Defence Malaysia. This article is not intended to replace, dictate or define evaluation by a qualified doctor. The views expressed do not represent that of any organisation the writer is associated with. 

Disclaimer: Nothing on this blog should be considered or used as a substitute for medical advice, diagnosis or treatment. Blog visitors with personal health or medical questions should consult their health care provider.