Coping with the news of disability2 February 2011
By Dr AMAR SINGH
PARENTS face many challenges when their child is diagnosed with a disability. The primary struggle is to accept the diagnosis given by a medical practitioner. Often there is the classical grief response of shock, denial, anger and depression before healthy acceptance comes.
Parents experience a gamut of emotions ranging from guilt (of possibly being responsible for the disability) and fear (of what the future may hold) to depression (at having to cope with the burden). They also face stigma from family members and society, for having a child with a disability.
This traumatic experience can be mitigated by how a healthcare professional, especially the doctor, supports the parents at the time of diagnosis.
The “clinical” model in which doctors are trained often tends to dehumanise the relationship and there is a need to return to a more holistic approach.
The current training of medical students and young doctors in the care of parents and their children with disability is limited. There is little focus on disability in the syllabus and it does not cover disability in any depth. Traditionally, the focus has been more on physical disabilities (eg, cerebral palsy) than on intellectual or learning disability. This is despite the fact that learning disabilities account for the majority of childhood problems.
Most medical students or doctors are not trained adequately on how to give bad news. Doctors as a whole have a tendency to shy away from painful clinical situations, both acute (eg, impending death) and chronic (eg, inoperable condition or difficult to rehabilitate disability). Their focus is on curing diseases. When this cannot happen, they feel defeated and may distance themselves.
They also tend to look at these children based on their disability, that is, an “autistic child” rather than “a child with autism”. There is a need to help younger staff members learn how to engage parents sensitively by example (role modelling) rather than formal teaching.
Medical students are trained to be objective, that is, to be clinically detached from the patient. This is supposedly to assist them in making good decisions on patient management. This outlook, however, hinders them from forming meaningful relationships with parents and their children with disability.
There is little, if any, training of a spiritual dimension for the medical practice. The lack of a meaningful spiritual dimension in undergraduate or postgraduate training means that doctors do not explore their own outlook on disability.
Doctors come from diverse backgrounds. Many false societal beliefs influence doctors, including their views on disability. Among the common misconceptions are: God’s will that the child is disabled; a “test” from God for the parents; punishment from God (for past sins of the parents); a result of “salah pantang” (broken a superstitious belief) and possibly the work of evil spirits or a curse.
The lack of a meaningful spiritual aspect to training, deprives the doctors of valuable skills and resources to understand more deeply how parents respond to the challenge of having a child with a disability, and offer support.
The health service is constantly changing, but not always for the better. We need to be reminded to always put the patient at the centre, and not the health care profession.
The development of services for children with disability and their family is largely in the hands of professionals or therapists working in government agencies and non- government organisations. This has often resulted in services that are developed to meet the needs of the professional, therapist or organisation rather than those of the child or family. Children with disability and their parents should be consulted and involved in the decision-making process of proposed and existing services which cater to their needs.
What are the needs of the disabled? What services do they need? The list below summarises the key needs of parents and their children with disability:
> Infancy/at presentation: assessment, rehabilitation, family support groups;
> Pre-school: focused early intervention programme, specialised therapy, kindergarten, respite care;
> School: inclusive education, special schools, home schooling;
> Special needs: recreation and leisure, sexuality and abuse prevention, emotional adjustment, adolescent awareness, aid or equipment;
> Employment: vocational training, sheltered employment, open employment;
> Long-term care, financial support, friendship and partners, dignity and rights, hope.
This is a long and extensive list of needs. Supporting such families is like running a marathon, not a 100-metre dash. Doctors must not feel exhausted or be afraid of meeting such needs. We need to do what we can and not feel as failures.
Parents are appreciative of our presence rather than our technical services. They desire continuity of care, that is, the attention and friendship of one doctor or nurse whom they can come to trust and with whom they can share their hopes and fears.
As doctors, our primary function is to be “in the service of” to those who are ill and in need of care. This requires us to build a therapeutic bond with them, that is, parents and children need us to become their friend. This does not diminish our care or make us less objective; rather, it enhances our care.
It is not about how much we as doctors do, but about how much we love.
We must develop a practice where parents and children see the same doctors most of the time. Doctors need to undergo internal change (spiritual deepening of personhood) which is more important than external change (technical advancement and skills).
Every parent must be treated as a unique individual and offered the time and space necessary to express and come to terms with their grief.
The doctor can play a key role in supporting them by offering an honest opinion tempered with compassion, by not merely describing the disability but also the strengths of the child, by not just outlining the challenges but also the hopes, by being an attentive listener and friend.
The list below outlines some of the key areas we need to work with, with parents and children:
> Respect for the parent and child as a family;
> Help parents make the transition from doctor/disability/centre focus to family focus and wholeness;
> Recognise and support the prolonged and often cyclical grief process;
> Not to ignore the religious beliefs of others and integration of true spirituality into our practice;
> Help articulate pain, fears and wishes;
> Empowering parents and the community and individuals to support each other’s needs.
Our ultimate aim must be for the family and the person with a disability to live a meaningful life rather than allow the disability to run their life.
We need to see children with disability and their family as partners and offer them care in a way which dignifies, best meets the needs of the person with disability, and takes into account his or her cultural and spiritual needs.
I firmly believe that the day we lose sight of the importance of every single child, is the day we lose our right to work with children. It is the child who is all important, not the system.
Datuk Dr Amar Singh is a senior consultant paediatrician (community) and head of the paediatric department at Hospital Raja Permaisuri Bainun, Ipoh. He has been working extensively with parents and children with disabilities.
One Voice is a monthly column which serves as a platform for professionals, parents and careproviders of children with learning difficulties. Feedback on the column can be sent to firstname.lastname@example.org.
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