Support Group as an Intervention Techniques of Chronically ill Patients-With Reference of St. Johns Medical College Hospital, Bengaluru

Dr. R Shivappa

Rochana D’souza

“We cannot climb up a rope that is attached only to our own belt.” William Ernest Hocking
Support groups are the organizations of people who share a common disorder and problems who meet together to discuss their experiences, share ideas, and provide emotional support for one another. Usually a support group is led by a member who has had some training in facilitating group discussions. Unlike formal group therapy, self-help support groups are usually not led by a professional therapist but nevertheless can be a helpful coping tool to complement formal treatment. For some types of problems, such as bereavement after the death of a loved one, or coping with chronic medical conditions like cancer, chronic kidney disease, HIV, hospitals or community agencies often provide support groups led by a social worker or other counselor.

History :

• The first people in history to demonstrate the power of self-help groups were alcoholics. Alcoholics Anonymous was started in 1935 to help “hopeless alcoholics” recover from alcoholism, something the medical profession had been unable to do.
• Larry Davidson, Professor of Psychiatry at the Yale School of Medicine, tracks the beginnings of peer support to psychiatry patients. Peer support surfaced again in the 1965 with the efforts of Robert Carkhoff and Charles Truax, in which lay counselors, trained with specific skills, were successful in helping mentally ill patients in hospital settings and psychiatric hospital in late 18th century at France.
• Social movements empowered former mental health service users to help each other and advocate for themselves. From these humble roots, peer support quickly found new applications in chronic disease management (diabetes, mental health, heart disease, cancer, asthma, HIV/AIDS, substance abuse), screening and prevention (cancer, HIV/AIDS, infectious diseases), and maternal and child health (breastfeeding, nutrition, post-partum depression). 

Peer support is gaining recognition in almost all sectors of health and healthcare. Health researchers are continuing to build the evidence base for peer support for a variety of disease conditions, populations, and settings. Healthcare providers are seeing the benefits of peer support on their medical practices, particularly when it comes to patient satisfaction and patient outcomes.

What to Expect in a Support Group
Support groups vary, it is a group of people meet on a regular basis to discuss their experiences and provide mutual support.
Unlike formal group therapy, the meeting is often led by a lay person or group member with some training in facilitating group discussions. The group leader may act as a moderator.
Support groups can help anyone who is in need of emotional support for a particular problem especially for people who may feel isolated or feel that other people in their lives don’t fully understand the kinds of problems they may be struggling with. 
A support group is made up of people who have a similar condition or problem. 
But in some cases, the group consists of people who have different specific disorders (like a variety of mental health or medical conditions) but share a common goal of seeking emotional support.

Chronic Disease:

• In chronic disease situation in which human health condition  is persistent or long lasting in its effects 
• Living with chronic disease has a serious negative impact on people’s quality of life. They feel it is a life sentence and they decide to stop treatment due to their psycho-social problems. 
• These patients have common emotional reactions like Shock, Denial, Confusion, Fear, Anger, Uncertainty, Anxiousness, Guilt, Isolation etc… if these reactions last too long, they can have an negative effect on the illness.

Psycho-social aspects of chronically ill patients:

• They Miss their normal life – chronic disease prevents  the person to function normally in the family and society as they were before .
• They find difficult to cope with acute and chronic pain of disease and treatment procedures.
• They feel vulnerable, frightened and hopeless due to uncertainty in the life. Each day is a new day for them with new challenges. They are not even able to think about tomorrow.
• Concern about body image and its effect –swellings, hair loss, pale skin, and rashes etc are side effect of treatment might result inferiority complex among them.  Societal reaction to these changes will also contribute to develop psychological problems among them.
• Social isolation – due complex treatment schedules, medical advices and limitation to move they are unable to attend any of the family functions and social gatherings. They may also remain away from this due to the fear of reaction from the people.
• Work /school life disruption-medical advice, pain, weakness, treatment schedules  etc will prevent them to attend regular school and work.
• Reaction from peer groups increases their worries about life. Showing sympathy , commenting on their bodily changes , over protective behavior , keeping them away from the group also increase their worries about life.
• They develop fear of leaving behind others –They observe the friends, siblings, neighbors who were like him/her are moving forward in their life which forms feeling of leaving behind others.

Psycho-social aspects of Parents/Caregivers of chronically ill patients 

• Fears & worries about beloved ones acute & long-term survival, recurrence and loss –certain illnesses doesn’t have cure. Medical management is only to prolong their life. The people who are close to the patient always has fear of uncertainty.
• Fear of complication in the treatment-Infection is one of the main causes of death in chronically ill patients. Taking care of patients is the responsibility of caregiver. So they always have fear of complication.
• Stress and depression due to complex hospital schedule and patient care – caregiver will not be able to give time for her/himself. 
• Disclosure to patient-they find difficult answer queries patients out of their anxiety and worries of losing beloved one.
• Imbalance in family dynamics (disruption of family system) –for the treatment purpose they live near the hospital. they can’t attend their work, concentrate on other family members who are depending on them.
• Work life difficulty and social isolation-chronically ill persons are depending on them for their day to day activity which prevents them to go to work or attend any social gatherings
• Guilt feelings with limit setting & lack of resources. It mostly happens with middle class and lower socio-economic group. With lot of anxiety and hope they try to provide all the necessary treatment and facilities to their beloved one and then gradually they drain their all the resources. 

Psycho-social problems in siblings of chronically ill children

• They feel forgotten/ neglected – most of the parents unknowingly neglect other children due to the stress of having a chronically ill child. 
• They feel jealous of patient’s attention.
• They develop negative-attention seeking behavior like pretending sick, insomnia, showing anger, withdrawn behavior etc.
• Sadness, anger and sibling rivalries increases due to parental negligence.
• Mild somatic symptoms like headache , abdominal pain are some of the psychological problem seen among these children.

Therefore chronically ill patients and their families’ needs “continuous healing relationship” with a care team and organized practice system to meet their needs.

Their Common Psychological Reaction has to be addressed in the time.  Support has to be provided to deal with crisis situations. 
Following are the situations in which patients and family needs the psycho-social support.

• The diagnosis of chronic illness
• The beginning of treatment 
• Discharge and  Follow-up plans 
• The end of treatment
• When they return to their normal life
• Being a survivor
• During the time of  relapse
• At the time of death and bereavement

Support group is one of the intervention techniques which helps chronically ill patients to overcome from  certain psycho-social problems. 

• The group helps them to end the feeling of isolation-Realize that he or she is not alone; there are other people who are suffering from similar problems. 
• Anonymity offers a sense of safety; confidentiality also helps them to over come from fear and anxiety.
• They  are never forced to speak until they are comfortable.
• Being in a support group will also help you develop new skills and awareness on their own disease and management.
• The members of the group who have the same problems will support each other and may suggest new ways of dealing with a particular problem. 
• New ways of dealing with illness – each member will share their coping strategies so others can easily adopt it. Experts also called to provide training on different coping strategies.
• Opportunity will be provided to each patients to share their own approaches.
• Reduces anxiety, increases hope, improves self-esteem, and helps members’ sense of overall wellbeing. 
• Decreases the sense of isolation and stigma that people may feel. 

Currently, we have 12 support groups for Dialysis patients and  care givers ,Burn victims ,Pediatric oncology ,Neonatal mothers ,Breast cancer , Geriatric patients, Retro  positive patients ,Thalassemia, Haemophilia and SLE patients .

Outcome: 
The outcome of the support group is found in decreased number of dropout rates ,regular follow-up ,increased adjustment ability & long term coping skills, compliance to the medical treatment, decreases behavioral disturbances, psychological well-being and medical care.

Improved coping skills and ability of resolve family conflicts; it also helped us to prepare them to face the outcome of the treatment.

Regularity and continuation in treatment is also one of the major changes found in our patients.

To conclude, the secret of quality is love, we have to love your patients, we have to love your profession and if we have love, we can work backward to monitor and improve the system.”
         
References:

1. Alderfer, M. A., Labay, L., & Kazak, A. (2003). Brief report: Does posttraumatic stress apply to siblings of childhood cancer survivors? Journal of Pediatric Psychology, 28, 281–286
2. http://www.phoenix-society.org/resources/entry/emotional-safety-support-groups 
3. http://selfhelpgroups.org/FAQ.htm 
4. http://fpiesfoundation.org/starting-your-own-support-group/
5. Jeanette Euphemia Wilhelmina Maria van Dongen- Melman ON SURVIVING CHILDHOOD CANCER, Late psychosocial consequences for patients, parents, and siblings.

Dr. R Shivappa
Associate Professor and Chairman, DOS in Social Work, University of Mysore, Manasagangothri, Mysuru.

Rochana D’souza
Medico-Social Worker, St.Johns Medical College Hospital, Bengaluru.