Why a better support system is a must to help parents of kids with LLCs
LIFE-LIMITING conditions (LLC) are medical conditions with no reasonable hope for a cure, even with the current advancements in medical science. Certain syndromes that children are born with fall under this category, including cystic fibrosis and Duchenne muscular dystrophy.

Parents are usually ill-prepared to have a child with LLC. It is not part of the usual parenting playbook. And changing this script is very difficult, especially when faced with the possibility that their child’s life might be shortened.

So, what can parents and family members do? Where can they reach out for help? What can be done by others for such families? These questions were posed to me recently and they got me thinking about services for such concerns.

As a society, we are not prepared to face the shortened life of a child. Paediatric palliative care is extremely rare in our healthcare system and even then, it lacks trained professionals to provide effective service.

Health professionals themselves often lack the skills to help parents manoeuvre the healthcare system to get support, partly because of the severe shortage of expertise, services and facilities that provide palliative care for children.

We know that paediatric palliative care contributes to significant improvements in quality of life not just for children with LLCs but also for their parents, family members, and to some extent, the medical care providers. In the absence of organised palliative care services, what can we do?

Global standards

I came across a revised paediatric palliative care standards published in 2022 based on a global overview of research in this area. These standards highlight the needs for identifying practical challenges that caregivers, usually parents, go through and addressing them as a system. These challenges are often emotional, cognitive, social and financial, on top of altering family dynamics.

Some parents have trouble accepting the diagnosis and prognosis of the disease and experience significant anxiety about the child's future. Such anxiety can also compromise parenting ability or even lead to neglect of the child. Parents may even face exclusion from their career and the family as a whole may experience physical and social isolation.

These standards imply that family members should be offered the opportunity to share and discuss their personal feelings and thoughts, so that they can align their needs surrounding the care of a child with LLC. Alignment is key to navigating services as a family. A family is like a ship. As such, open communication is vital so that directions to take are clear and based on shared needs. This is easier said than done but with appropriate support from compassionate professionals with advanced communication skills, it can be achieved.

While we may not have an existing support system as a norm, various stakeholders in the country can work together to develop them as recommended by the Global Overview – Paediatric Palliative Care Standards (GO-PPaCs) adopted as the international standards for PPC. These include three broad categories: (1) home care and organised support, (2) siblings and grandparents’ needs, and (3) education and training for healthcare providers.

Under home care and organisational support, parents and other family members are provided training on caring for their children at home, whenever possible. Care should also include maintaining social roles of parents and siblings as much as possible to maximise quality of life, given that being a full-time caregiver erodes a person's social connections.

All these would have extra financial commitments that should also be addressed. Overall, a systemic approach is necessary. It was also acknowledged that the suffering of siblings and grandparent are often underestimated in the process of tending to children with LLCs. As such, there is a need for healthcare providers and relevant stakeholders to engage in interprofessional collaborations towards the well-being of families living with children who are facing real risk of a shortened life. This means having interdisciplinary education in palliative care.

Parents' needs

For parents who are caring for children with LLC, their needs often revolve around communication with health professionals and for them to have freedom of choice, shared decision-making about their child’s care and their need for information, especially to access financial support.

Research show that parents often seek open, honest and comprehensive communication, and they encourage collaborations with health professionals and the palliative care team. A lack of compassion and open communication can contribute to heightened grief after death. Compassion also involves respecting and empowering parents with having choices to make, such as determining their child’s place of death. It is a very difficult conversation for many people, but research show that such a degree of preparedness helps in managing grief.

Often, families have difficulties getting relevant informational resources. These include basic knowledge of their roles as caregivers and what palliative care means for their child with LLC. Parents reported appreciating practical information such as how they can align with the palliative care team on symptom management and emergency measures, as well as holistic knowledge on the condition of their child so that they can better manage expectations.

Overall, their common needs revolve around practical issues such as dealing with work demands and the impact of caregiving such as lifestyle changes, income decline and financial stress of healthcare. Areas of life such as transport and housekeeping feature significantly in their practical needs. Such demands open up major vulnerabilities in parents that can leave the whole family disempowered and exhausted.

This is where we can set up community resources to offer some support, at least in housekeeping such as cooking, cleaning, doing the laundry, grocery shopping and also providing transportation. All these can help parents significantly. Many parents neglect their own well-being as caregivers, and practical assistance helps caregivers get some respite and keep them from caregiving burnout.

Aside from practical support, parents and family members would certainly appreciate psychosocial as well as spiritual support to address the sense of frustration and powerlessness as well as feelings of isolation and being trapped as a caregiver. Such support can help with healthy coping skills, resilience and sense of self-efficacy, self-worth and hope. These have been shown to help with emotional difficulties that manifest, including anxiety, fear, shame, guilt, anger and grief.

Focusing on growth helps us move pass potentially traumatic experiences of anticipatory loss and actual loss. A major factor of resilience is progressively building social networks to maintain psychosocial needs. As a society, it would be very helpful to create support systems for such an invisible but substantial need.

We also need more informational resource platforms; research show that sometimes information on what’s available is enough to provide a sense of comfort and empowerment to caregivers since they know help is available. Let’s generate jobs and skills that provide these parents with practical and psychosocial support.

There is so much that we can do, given the lack of resources for caregivers of children with LLCs. We all should lend a hand to create a network of support for those in need. Think about how you can contribute in this area; after all, meaningful and intentional pursuits are what contribute to satisfaction in life.

Dr Alvin Ng Lai Oon is a professor at the Department of Psychology, School of Medical and Life Sciences, Sunway University. He is a clinical psychologist by training and is passionate in promoting mental health literacy in the community.
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As a society, we are not prepared to face the shortened life of a child; paediatric palliative care is extremely rare in our healthcare system and even then, it lacks trained professionals to provide effective service.