The bubbly 14-month old Rohan, who used to be all over the house until a major fever struck, was lying listless besides his weeping parents. The viral infection had turned out to be poliomyelitis, a disabling disease of the nerves that affected his backbone and both legs. The attack converted him to a paralysed mass of flesh sparing only his upper limbs and brain. Doctors assured Rohan’s parents that the boy would grow physically but did not give clear answers about the boy’s ability to walk or lead a normal life.
His parents took him from one doctor to another—first a paediatrician, then an orthopaedic surgeon, followed by neurologists. And to more doctors across the city they lived in. They spoke to counsellors, physiotherapists, occupational therapists and instructors of special children. They even sent his reports to relatives living abroad. Yet, no expert could predict the child’s future. Most experts rattled off statistics telling them how a majority of these boys ‘manage well’ as they grow up. Sadly, none answered their questions: Would my son be able to manage his personal hygiene? Would he be able to stand up, walk to school? Would he ever be independent? Would he remain bedridden for the rest of his life?
It was only after the child was about four years old and by then, limping around the house, that there was some breakthrough, which came with a simple question the father’s UK-based colleague asked, “Why don’t you approach a Support Group?” Now, what’s that supposed to mean?
What is a support group?
A support group is an assembly of individuals or families who come together to face similar problems/illnesses to which medical science may not be able to give definite answers. In all these cases, the therapy is not clearly defined and each patient responds differently at different stages of life. Typically, the treatment for these problems does not end with simple administration of medicines or performing exercises—it stretches for years or even decades. In some cases, the condition deteriorates over the years and the physician is not always available to guide on simple, day-to-day matters.
In cancers and other life-threatening conditions, coming to terms with the deterioration is traumatic—for the patient as well as for the family. People who have undergone similar situations are in a better position to guide other people in the same position.
The group of people [patients and relatives] meet regularly and share their experiences on the progress or deterioration of the person concerned and try to help each other manage it. These groups give emotional and practical support. By exchanging information, such groups help the patient and families develop coping strategies.
Human beings have evolved into species that functions best in groups. Groups allow for critical support mechanisms that increase the chances of survival of the members. Little wonder that we seek out friends, family, relatives, and colleagues all the time [except when we want to be left alone]. Being in a group stimulates thought, discussion and debate, which helps generate fresh ideas.
Just like children run to their parents for suggestions on a vexing problem, people suffering from illnesses having poor success rates or which are chronic and repetitive, try to seek out others tormented by a similar predicament.
Support groups provide a platform to patients and their families to express their personal experiences and comfort themselves with the experience of peers. While sympathising with others in the group, members gain courage to manage their own difficulties better. To reclusive families, it provides a forum for social networking.
Information about newer therapies is available from other members. Better techniques to help the patient negotiate critical areas of life can be obtained here and regular discussions help avoid the blunders committed by others.
Ketna Mehta, a Mumbai-based founder of Nina Foundation, a support group for spinal injury, says that the afflicted members overcome their rigid beliefs by observing how others in the group manage on their own. “A paraplegic member who was petrified of attending our support group meetings without her family and car for several months, managed to travel by taxi on her own by observing others. She is now so confident that she evens discards her crutches to walk at home. This is a huge leap towards independence,” says Ketna.
In the case of suffering children, such groups also guide parents on how to go about planning schooling and transportation. According to a parent, C Nandini, “An experienced parent could guide parents of another special child on how they could send her to a normal school with the help of an attendant. Just giving the child the requisite push will propel her to achieve greater heights, making her not only independent but also socially useful.”
Conditions for which support groups exist
In the developed countries, support groups exist not only for serious illnesses but also for specific categories of people, for example, gays. Check out this online list of support groups. In India, it is not yet a common phenomenon outside metropolitan cities. Some of the common conditions for which support groups exist globally are:
- Addictions like alcoholism, drug addiction, tobacco chewing and smoking.
- Adult brain disorders like epilepsy, stroke, multiple sclerosis, Parkinsonism, Alzheimer’s disease, motor neuron disease and dementia.
- Developmental disorders like cerebral palsy, Down’s syndrome, dwarfism, dyslexia, dyscalculia, dysgraphia, autism and Attention Deficit Hyperactivity Disorder [ADHD].
- Chronic illnesses like rheumatoid arthritis, atopic eczema, psoriasis, kidney failure, mental illnesses and juvenile diabetes.
- Blood disorders like haemophilia and thalassaemia.
- Skin disorders like atopic eczema, ichthyosis, vitiligo, psoriasis, scleroderma, neurofibroma, pemphigus and acne scars.
- Sex-related issues like sexual abuse, homosexualism, porn addiction, erectile dysfunction, herpes infection and AIDS/HIV.
- Orthopaedic: Amputees, paraplegics, quadriplegics, and physically disabled.
- Visually challenged and hearing impaired.
- Infertility and adoption.
What support groups do
Support groups disseminate information through various means. They hold regular meetings on medical treatment, surgeries, mobility, rehabilitation and emotional support. Those who have managed to overcome their limitations provide guidance to new members.
Sometimes experts are invited to speak on specific topics. A question-answer session follows the talk, which allows members to get their doubts cleared. Some groups also publish newsletters for members.
Support groups that are financially sound or that receive sponsorships also fund part of the treatment costs. They even provide wheelchairs, callipers, crutches, hearing aids, spectacles and water beds to those who can’t afford them. Some groups even celebrate birthdays/anniversaries of members. Members are also encouraged to participate in events such as marathons. Such initiatives provide an occasion to celebrate and participate in social activities.
Types of support groups
Self-help groups: Such a group is actively promoted by members that include patients, relatives and care-givers. They allow frequent meetings between members, either at a member’s residence or at a prearranged venue, usually a hospital or school premises.
Professionally-supported groups: Unlike the above, these are run by doctors, social workers, psychologists, counsellors or religious bodies. Meetings of such groups are usually conducted in hospitals, medical colleges, research institutes and charitable health centres.
Online groups: These are run either by members or professionals. They provide online guidance to their members and usually do not have personal meetings as their membership is usually across the globe. These groups hold regular chat sessions, bulletin board messaging and web-based discussions.
India has a long way to go
India still lags behind in having active support groups. They are present only in major cities. One way forward is to ask your physician for details of an support group in the vicinity and join the group. Even if the meetings are held far away, it is worthwhile to attend a few sessions to understand how they function. You can then set up another chapter in your locality so that more people can benefit. The parent group or your doctor may even help to get things started. It helps you as much as it helps others. As Dr Mehta says, “The one giving a tip in the support group also gains confidence for helping another”. It’s like what Gautam Buddha said, “If you light a lamp for someone else, it will also brighten your path”.
- Although support groups are a great source of strength for its members, the guidance of seniors cannot replace professional advice. One must not alter medications or change a treatment on the advice of a fellow member without consulting one’s physician.
- Support groups may provide a sense of security but that should not be taken as a reason for not visiting your doctor. Also, unregulated advice by self-help members may cause confusion among patients. The professionally-supported groups are at a better standing in this regard as the doctor concerned takes key decisions.
- While the group will help you cope with the issues of family and life, one-on-one medical consultation is necessary periodically for specific therapy.
- “Most support groups are not exclusively sustainable models, especially in case of career guidance for children with special needs,” says Manasi Mehta, mother of an adolescent special child. “Similarly, issues relating to adolescent behaviour among special kids need to be sorted out with a doctor and cannot be addressed in a support group,” she adds.
Active support groups in India
- Spastics Society of India
- Amputee Association of India
- Multiple Sclerosis Society of India
- Maharashtra Dyslexia Association
- Cancer Patients Aid Association
- Crusade Against Tobacco
- Indian Cancer Society
- The National Association for the Blind
- Blind Men’s Association
- Motor Neurone Disease Association of India
- Action for Autism
- Parents of Down’s Syndrome
- All India Muscular Dystrophy Association
- Positivesaathi.com for HIV+ matrimonial
- Indian Spina Bifida Association
- Alcoholics Anonymous
- Dignity Foundation for elderly
- Vimochana [Women’s rights]
- Nina Foundation for spinal injury
- The Humsafar Trust for homosexaul men
- People Living with HIV and AIDS [PLWHA].