Apaar – Boundless
Apaar is a Hindi word which means without boundary.
The Apaar program of the foundation is based on the thought that medical care has a limitation, but there are no limits to taking care of a person who is seriously unwell.
This initiative of the foundation is an offering in the direction of better quality of life to children and adults who are deprived of the joys of life on account of life limiting diseases.
In this endeavour we lay special emphasis on children and adults who are struggling in their fight against life limiting diseases.
Mission of the intervention: To work closely with the hospitals to improve the quality of life of children and adults who are suffering from life limiting diseases and their care givers by using an interdisciplinary approach towards psychosocial component of patient care.
Problem Area: The number of doctors in the country is no match to the pace of increase in incidence of life threatening diseases. As a result of it, patients who suffer from serious diseases are tackled at the curative level but the other important half of psycho social care doesn’t receive as much attention.
Individuals who are fighting serious diseases have to grapple with phenomenal pressures that accompany such life threatening diseases. Some of the common fall outs are emotional stress, financial pressure, social stigma, physical weakness, pain, psychological aspects like nervousness, depression, anxiety etc.
More often than not, patients who suffer from such diseases generally find themselves wanting beyond medical assistance which is provided by the hospitals.
The Apaar program is a complementary effort in tandem with the hospitals to provide psychosocial support to patients who are seriously ill and are being deprived of the regular joys of living.
At present the foundation is working with Tata Memorial Hospital which has pioneered the palliative care initiative in Mumbai. The focus with this hospital is on individuals who are in a palliative phase of the disease.
WHO (World Health Organization) defines palliative care as the active total care of patients whose disease is not responsive to curative treatment. Control of pain, of other symptoms and psychological, social and spiritual problems is of paramount importance. The goal of palliative care is achievement of the best possible quality of life for patients and their families.
- provides relief from pain and other distressing symptoms;
- affirms life and regards dying as a normal process;
- intends neither to hasten nor to postpone death;
- integrates the psychological and spiritual aspects of patient care;
- offers a support system to help patients live as actively as possible until death;
- offers a support system to help the family cope during the patient’s illness and in their own bereavement;
- uses a team approach to address the needs of patients and their families, including bereavement counselling, if indicated;
- will enhance quality of life, and may also positively influence the course of illness;
- is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life, such as chemotherapy or radiation therapy;
- includes the investigations needed to better understand and manage distressing clinical complications.
Source: Palliative Care Module, WHO
The program targets three different sections of people:
- Caregivers and
- Bereaved family members
The sessions are organized in collaboration with the hospital as the hospital authorities have the best understanding of the patient’s history and also the overall psychological state of both the caregivers as well as the patients.
Informal sessions are conducted with the help of volunteers using games, music, art, skits etc which act as powerful outlets for the target group to help them emerge from a state of constant stress and experience the joys of life. The focus of these activities is to make the people understand the ‘Power of Present’ and to make the best use of the valuable moments by spreading joy and love.
The support group sessions are driven by the hospital authorities and involve expression of one’s problems and methods to cope with them in a group setting. When several people talk to each other about similar problems, interesting ideas and thoughts emerge to nurture positivism in life.