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Interventions for children with intellectual and developmental disabilities (IDD) typically involves individual and parental attention by a team of educational and health professionals.

There is not much mention of sibling support an involvement as part of overall interventions for children with IDD. 

I'd like to bring up the need for sibling support and how they can be involved in enhancing the development of children with IDD, because they are part of the family too.

Impacted quality of life

Research show that the impact to the family is shared among all members, but the quality of impact is unique to the individual member depending on their perceived roles and responsibilities, as well as their personal beliefs about having a sibling with IDD.

Sociocultural factors such as stigma, religious beliefs and societal expectations as well as literacy surrounding IDD play a role.

Some views about disability could lead to the idea that the child with IDD is someone to be healed, or the condition is some kind of punishment from God. Such beliefs could affect how the child is treated by the family.

Alternatively, some view children with IDD as a divine gift, and a special opportunity to grow as a unique family. Some cultures see beyond the disability and focus on filial obligation and pride in having a mutual commitment to protecting and sustaining the family system.

Therefore, the impact of having a sibling with IDD depends on various factors, including personal, social and environmental variables. Nevertheless, there are common struggles that siblings experience.

Children may understand and accept that their sibling with IDD need special attention but at the same time, feel conflicted about themselves lacking parental attention.

Conflicts may also happen when parents insist their children play with or watch over their sibling with IDD when they don't wish to do so. There is also the stress of dealing with public outbursts of children with IDD, usually bringing about feelings of embarrassment and shame in the siblings.

Often, daily lives of siblings are disrupted. These disruptions affect factors that contribute to overall well-being, such as sleep, rest, nutrition, physical activities, socialisation, education and daily domestic activities.

Children with disturbed sleep and other daily needs suffer from poor concentration, moodiness and fatigue, leading to poor overall functioning and socialisation.

Many siblings also feel reluctant to share their problems with parents, fearing that they may add to their daily pressure of parenting. So, where do they go for help if not their own parents?

Sometimes, to reduce the pressure on siblings, many parents of children with IDD are reluctant to involve their typically developing children in caregiving plans and they fear burdening them with too many future responsibilities.

This happens despite sibling relationships being the longest lasting family relationships. Siblings also tend to be well-equipped in guessing what their sibling with IDD wants, means or feels.

Such avoidance may contribute to future difficulties when siblings who are not used to caring for their IDD sibling are suddenly given the responsibility by ageing parents who are no longer able to provide direct care. 

As siblings grow up, their role as carers becomes more prominent as well.

There is also a gender element to this; female siblings tend to be expected to demonstrate a stronger carer role compared to male siblings. This is something that may further impact the experience of a sibling.

What siblings want

We know from research literature that siblings of children with IDD have a number desires that tend to be missed or ignored. 

These include the wish to be understood, and to have their experiences shared with other siblings of children with IDD so that they can learn from each other on how to better relate with their siblings.

Many siblings also wish to have clear and straight communication with their parents on information about their siblings with IDD and practical issues such as how to deal with eventual circumstances surrounding the disability.

Basically, the siblings want to feel more empowered in taking actions to address a problem and to know how to find resources.

Research also show that children wished for better services and support for their siblings with IDD. 

Many also reported feeling ignored by parents and professionals in decision-making as well as activities that contribute towards improving adaptive behaviour skills of their siblings with IDD. When they are unsure of what to do, they feel lost and helpless. 

Feelings of helplessness and disempowerment contribute to personal distress and sense of isolation in siblings. So, including siblings in intervention activities, giving them training and active roles to play helps to improve self-efficacy and sense of belonging. 

Many siblings also report valuing respite care facilities, or temporary residential placements for their siblings with IDD so that the rest of the family can have short breaks to recover and recuperate. 

Lastly, siblings appreciate having support from other siblings, friends, parents, extended family and the larger community in understanding what they go through and in getting help for various needs.

What can be done? 

We know that developing an empathetic sense towards siblings with IDD, with the use of love, humour and joy can help to reinforce their relationships and improve overall quality of life of the family. 

Research also show that acceptance of the family situation can have positive consequences for siblings. It can help siblings to adjust and even to benefit from their relationship with the sibling who has IDD. 

Parents with positive and progressive views and acceptance of their child's disability can influence the rest of the family to accept it as well, leading to improved quality of life. 

If families can be aided to develop healthy acceptance of the child with IDD and empowered to address issues progressively, a lot of unnecessary distress and conflicts can be avoided.

Clear family communication can help siblings feel more prepared for the future and decrease the discrepancy between parents' and siblings' expectations of future burden on siblings. 

Any form of family intervention should facilitate open family discussions in promoting positive sibling adjustment and addressing issues of caring for their sibling with IDD.

Related healthcare professionals such as family medicine specialists, paediatricians, psychiatrists and clinical psychologists also need to recognise the increased vulnerability of siblings of children with IDD to mental health issues. 

Research literature suggests targeted mental health support services tailored to the specific needs of these siblings. Studies show that social support play a crucial role in buffering the challenges faced by siblings of children with IDD. 

Integrating social support interventions into clinical practice can enhance psychosocial functioning of siblings. Sources of support include people from outside the family, such as peers, friends and teachers.

Current research findings emphasise the importance of creating opportunities for social activities to strengthen support from these external sources.

There is a great need to learn more about how we can help siblings of children with IDD to adjust and adapt towards adulthood as potential lifelong caregivers.

Why? Because the burden of disability affects us all, and we can all contribute towards reducing it by providing the support and resources needed. Let's get more literate about IDD and how we can contribute as a community towards becoming a productive society. 

Professor Alvin Ng Lai Oon
School of Medical and Life Sciences
Email: @email

This articles was first published in The Star, 26 February 2024.