Parents and Grief: How doctors can help parents deal with grief when they know their child is disabled
Parents face many challenges when their child is diagnosed to have 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. This process is traumatic and can be mitigated by how a healthcare professional, especially the doctor, supports the parents at the time of the diagnosis. Doctors need to recognise how important their opinion is from the perspective of the parent(s). Most doctors are not trained in how to give bad news, but even if they are, it is more than following a set of guidelines. Healthcare professionals first need to deal with their own outlook on disability and understand more deeply how parents respond to the challenge of having a child with a disability. 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 “clinical” model in which doctors are trained often tends to dehumanise the relationship and there is need to return to a more holistic approach. Of primary importance is that parents continue to see the same doctor at each visit so that a therapeutic bond can develop. Doctors must also have access to resources that can support parents to make a meaningful transition from the shock of knowing your child is disabled to the constructive work of rehabilitating the child (support groups & individuals, detailed information on the disability, training resources, etc). Disability services remain limited locally and will not improve dramatically unless parents and healthcare professional are joint advocates to pressure the government to allocate adequate resources. This can only happen when parents and professionals deepen their relationship and understanding.
This is a personal rather than a “scientific” discussion. It is based on many years of experience & learning from and listening to parents and their children with disability. It stems from a belief that spiritual issues are important in the life of an individual. In working close to 30 years in the health service, my observation is that it has not changed sufficiently to meet the needs of parents and their children with disability. This brief discussion hopes to highlight the key issues and suggest ways doctors (and the health service) can change to meet these needs.
Response of Parents to a Diagnosis of Disability given by a Medical Practitioner
Often there is the grief response of shock, denial, anger and depression before healthy acceptance comes. Parents experience guilt of possibly being responsible for the disability, fear of the future, depression at having to cope with the burden, stigma from family and society of having a child with a disability.
|Some key questions in the hearts of parents at the time of diagnosis:
• “Why has this happened to me?”
• “Was this due to something I have done?”
• “How do I cure my child?”
• "Will he go to normal school?”
• “Only my child is like this.”
• “My life is trapped!”
• “What will happen to my child when I die?”
This process is traumatic and can be mitigated by how a healthcare professional, especially the doctor, supports the parents at the time of the diagnosis. Doctors need to recognise how important their opinion is from the perspective of the parent(s). What the doctor says at the time of breaking the “bad news” is firmly etched in some parents’ hearts and minds, often influencing their long term outlook.
Some parent may oscillate between rejection of the child (abandonment, placement in a residential center, ignoring the issue) or unrealistic acceptance (fatalistic outlook, looking for a quick fix/magic, overboard activity, false expectations of "cure"). What is needed is realistic acceptance (peace, sustained involvement in care and constructive activity) which is easier said than done.
Training of Doctors to deal with Disability
The current training of medical students and young doctors in the care of parents and their children with disability is limited. There is very limited focus on disability in the syllabus and does not cover disability in any depth. Traditionally the focus has been greater on physical disabilities (e.g. Cerebral Palsy) than on Intellectual or Learning disability. The table shows that intellectual/learning disabilities account for the vast majority of childhood problems.
|Table: Frequency of Various Childhood Disabilities Detected in the Pre-School Age Groups
|Type of Disability
|Intellectual Handicap (Mental retardation – includes Mild, Moderate, Severe, Profound)
||10-30 per 1000
|Attention Deficit Hyperactivity Disorder (School going)
||50-100 per 1000 US estimates 20-50 per 1000 UK estimates
|Pervasive Developmental Disorders (Autism, ASD, Asperger)
||10 per 1000
|Learning Disability (eg. Dyslexia)
||50-100 per 1000
||3-4 per 1000
||1-2 per 1000
||1-2 per 1000
|Visual disorders (squint, amblyopia, refractive error)
||20-50 per 1000
|Overall Rates of Disability/Behavioural Problems
||10-16% of all children
|Sources: Hall 2003; Bhasin, MMWR 2006; Wing, National Autistic Society website; Rydz, J Child Neurol 2005; Boyle, Pediatrics 1994; Amar-Singh HSS, 2006 NECIC
Most medical students/doctors are not trained adequately in how to give/express bad news, but even if they are, it is more than following a set of guidelines. Doctors as a whole have a tendency to shy away from painful clinical situations both acute (e.g. impending death) and chronic (e.g. inoperable condition or difficult to rehabilitate disability). They are illness/disease trained with a focus on cure.
|What doctors should not to say (may be hurtful):
• I understand what you are going through
• It’s God’s will
• Time will heal
• Forget about it & have another child (when a child with a disability dies)
When this cannot happen they feel defeated and may distance themselves. They also tend to look at these children based on their disability i.e. an “autistic child”, rather than “a child with autism”. There is need help younger staff members learn how to engage parents sensitively by example (role modelling) more than formal teaching.
Medical students/doctors are trained to be “objective” i.e. to be clinically detached from the patient. This is supposedly to assist them in making good/clear decisions on patient management. This outlook however hinders forming meaningful relationships with parents and their children with disability. The “clinical” model in which doctors are trained often tends to dehumanise the relationships and there is need to return to a more holistic approach. There is little, if any, training of a spiritual dimension to the medical practise. This vacuum can result in five years of mind numbing medical school that may make a person less able to support hurting patients.
|Internal belief of some doctors as to the reasons for disability:
• 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
• Possible evil spirits or curse
The lack of a meaningful spiritual dimension in undergraduate or postgraduate training means that doctors do not explore their own outlook on disability. Many false societal beliefs influence doctors. Doctors are people first and come from diverse backgrounds. The text box shows common misconceptions that are held in the heart (internal beliefs) of some medical students (15 years of dialogue with many groups).
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.
|“These fear and myth driven approaches only fuel the idea that disability is dehumanizing and abnormal and this leads to increased stigmatization and isolation of disabled people, assumptions of disabled people as social burdens and the denial of the right to life itself.”
Hurst, Disability & Rehabilitation, Vol. 25, 2003
Changes in the Health Service
|Current Trends in Healthcare:
• More Technical & Expensive
• Institution Based Medicine
• Doctor & Illness focused (fragmented care with many partialist/sub-specialists)
• More Theoretical, Less Practical (Always Learning but Never Arriving)
• More Rushed, Less Personal
• Less Reflective (Not Listening)
• Too Many Courses
• Meeting Based Lifestyle
The health service is constantly changing, but not always for the better. The text box shows the direction the system seems to be taking despite efforts to counteract this. Recent statements by various health professionals have highlighted this issue:
"a system that puts the patient at the centre, not the health care professional at the centre" Tony Hobbs, Chairman Australian GP Network, Australia, 2008,
Health services must be based around the needs of the child, every child, and not around the needs of the service.” Susan Deacon, Scottish Executive 2001
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 (NGOs). 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 for their needs. Amar-Singh. Audrey Colliver, Brian Colliver. Statement on the rights & needs of children with disability. Network for the Needs of Children with Disability, Perak, Malaysia, 1995.
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 EIP, Specialised therapy, Kindy, Respite care
- School – Inclusive education, Special schools, Home schooling
- Special needs – Recreation & Leisure, Sexuality & Abuse prevention, Emotional adjustment, Adolescent awareness, Aids/Equipment
- Employment – Vocational Training, Sheltered employment, Open employment
- Long Term Care, Financial support, Friendship & Partners, Dignity & Rights, Hope, Advance directive
This is a long and extensive list of needs. Supporting such families is “running a marathon” not a “100 metres dash”. Doctors must not feel exhausted or afraid of meeting it. We need to do what we can and not feel as failures. Parents are primarily appreciative of our presence rather than our technical services.
What Patients and their Children with Disability Want/Need from Doctors
|Patients desire continuity of care i.e. “the attention & friendship of one doctor or nurse whom they can come to trust & with whom they can share their hopes & fears”
Inhumanity in medical practice, Weatherall, BMJ Dec 1994.
This quote from Weatherall articulates much of what parents hope from us. 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 – a nice word that really means that parents and children need for us to become their friend. This does not diminish our care or make us less “objective” but rather enhances our care. It is not about how much we do but about how much we love. We MUST develop a practise 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 & 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 (change) with parents and children:
1. Respect for the parent and child as family
2. Helping parents make the transition from doctor/disability/centre focus to family focus and wholeness
3. Recognise and support the prolonged and often cyclical grief process
4. Not to ignore the religious beliefs of others and integration of true spirituality into our practice
5. Help articulate pain, fears & wishes (including advance directive)
6. Empowering parents and community & 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 problem (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.
Meeting the Needs of Children with Disability in Malaysia
Amar-Singh HSS, Med J Malaysia 2008
|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 ... systems
What good are ... all our efforts to help children with disabilities ... if we use it to push aside a child’s dream, & in its stead impose our own. Our business is to discover the dream in each child, & to believe in it until it becomes reality.
No Ordinary Move by Linda Bidabe
|“In our fragmented, often broken societies, in our towns made of steel and glass and loneliness, people with disabilities can act as a kind of cement that binds people together. This is their role in society. They have a special part to play in the healing of hearts and in destroying the barriers which separate people from one another and prevent them from living happily and humanly.”
Jean Vanier, Our Journey Home
Dato’ Dr Amar-Singh HSS
Cert Theology (Aust, Hons), MBBS (Mal), MRCP (UK), FRCP (Glasg), MSc Community Paediatrics (Ldn, dist.)
Is a Senior Consultant Paediatrician (Community) and the Head of the Paediatric Department at Ipoh Hospital, Malaysia. He has been working with individuals with disability since 1978 and in the past 22 years extensively with parents and children with disability. He has been instrumental in establishing a number of family support groups and disability NGOs. He has assisted the Family Health Division, MOH to revise the entire child health programme (2006) with a view to introduce routine developmental screening for pre-school children. He also helped to revise the national registration mechanism for disability registration (2000). He has an active practise supporting and working with parents and their children with disability.