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Recognising the healthcare needs of parents

In this video, Nathaniel Scherer considers the healthcare needs of parents and siblings of children with developmental disabilities.
NATHANIEL SCHERER: In this video, we’ll be learning more about the well-being and health of parents and caregivers, as we continue to consider the impact of raising a child with a developmental disability. However, before we reflect on this, it’s important that we recognise a positive outlook to raising a child with a developmental disability. Too often, researchers, public health officials, and healthcare professionals view parents as victims who live a life of hardship, with a child that is a constant source of emotional distress and difficulty. These perceptions have a huge bearing on society’s view of children with developmental disabilities. And indeed, can have a negative influence on how healthcare professionals provide care.
Of course, raising a child with a developmental disability can present difficulties. But many parents also describe positive feelings and experiences. For one, parents often say they have grown and improved as a person through their child. And many parents feel that they’re more loving, caring, calm, and less selfish. With a deeper understanding of what is important in life. Many families also report closer relationships with other family members. and new friendships and connections gained. Parents may feel their communication and sharing has improved. And many couples report feeling closer to one another. Finally, and most importantly, parents of children with developmental disabilities feel joy and pride, just as any other parent would.
For the remainder of this video, we’re going to be discussing the challenges and difficulties faced when raising a child with a developmental disability. And the additional support needed by parents. Although important for us to discuss, they are, of course, not inevitable. And each family’s experience will be different. As we discuss these challenges, I want you to keep in mind the positive aspects, as well. Access to healthcare services, the quality of those services, and the work of health professionals are also defining factors in the parents’ experience of caring for their child. By improving these, we will improve the experience of raising a child with developmental disabilities.
So let us think on how raising a child with a developmental disability can negatively impact parents and family members. Due to a number of factors, parents can experience high levels of stress. For example, parents have increased caregiver demands, particularly if their child has multiple impairments. Parents may have to play a greater role in feeding, toileting, carrying, and washing their child. These demands may also mean that parents are unable to work full-time. When combined with ongoing healthcare costs, families can be put under serious financial strain. Parents may also report distress if their child develops behavioural problems, such as aggression, self-injury, or hyperactivity.
Some parents are even blamed for these challenging behaviours, as is often the case with parents of children with autism. Another factor to consider is societal discrimination and exclusion, which can leave parents feeling isolated and ashamed. The final aspect to understand is the sense of shock, anger, and hopelessness that many parents feel, especially when discovering a diagnosis or recognising an issue. Parents report mourning the child they thought they would have. And the dreams they held for them. Parents often experience ongoing grief, as they compare their child’s developmental progress against typically developing children. These stressors can ultimately result in relationship difficulties.
And although we have discussed the possibility of improved family closeness, research demonstrates increased rates of relationship breakdown between parents of children with developmental disabilities. These stressors can cause high levels of parental stress. And may even increase the risk of mental health issues, such as depression. Depression is problematic in itself, but can also result in a parent’s poorer physical health and social functioning. Which can impact on personal and family life. Of particular concern is the link between parental depression and diminished parenting behaviours. We know that children with developmental disabilities need nurturing care and ongoing support to reach their full potential. But for parents with depression, the quality and quantity of interaction with their child may be reduced.
And they may provide fewer engaging parenting cues. This can negatively affect a child’s development. And may make it more difficult for a child to progress and improve functioning. For example, if a parent with depression were to interact less and less meaningfully with their child, then the child’s social and communication development can be disrupted. If families are best to be supported, it’s important for healthcare professionals to be aware of these challenges and difficulties. So they can learn to monitor the well-being of parents and families. Not all parents will need additional support. But for those that do, healthcare professionals need to be able to react quickly. Effective communication is vital. And parents must feel able to express their concerns and struggles.
This may simply involve making it clear to parents that there is the opportunity to discuss their support, as well as the child’s. Consultations in private rooms and longer appointment times may help parents feel more ease when discussing their difficulties and challenges. It’s helpful for healthcare professionals to be aware of common signs of mental health problems, as parents and family members may not always feel comfortable or able to discuss these outright. Common signs may include confused thinking. Social withdrawal. Excessive fear, worries, and anxieties. Changes in sleeping habits, possibly recognised through tiredness. And uncharacteristic expressions of anger or sadness. Commonly, mental health problems are also expressed through physical ailments, such as stomach pain and headaches.
Options to support parents may start with simple informational websites and leaflets. As well as open conversations about the stressors in their life. Some people may require support from specialist mental health professionals, such as a psychiatrist or specialist nurse. When considering how best to provide support, it’s useful to consider that different family members may have different experiences of caring and ways of coping. And may reflect their needs differently. Healthcare professionals should know the support services in their setting and the appropriate referral pathways, so they can ensure any support can be provided promptly. This brings us back to the concept of collaboration and clear communication between services that we discussed in Week 2.
Before we finish, it’s worth us quickly mentioning the benefits of parent support groups. These programmes not only educate parents and carers on developmental disability. But they also provide a structured setting of social and emotional support by helping parents realise they aren’t alone. These groups can become a cornerstone of family-centred care. And may help parents who are feeling distress. They also set up a support network to help prevent these feelings in the first instance. Later in the week, we’ll discuss a parent support programme established by the London School of Hygiene & Tropical Medicine in Brazil. I want to end this talk by discussing the needs of siblings, having focused on parents throughout this video.
Brothers and sisters share many of their parents’ concerns. And may share care responsibility. As a result, they may have less time for themselves. And may feel their needs are ignored. Healthcare professionals can offer support to siblings, as well as parents. This can include offering age-appropriate informational material. And a clear, simple explanation of their sibling’s disability, which can help with their ability to cope. Much of the support can come from parents themselves. And a healthcare professional can often facilitate a family discussion so they can better understand the sibling’s needs and concerns. Having now watched this presentation, do take a look at the discussion points below. We’d love to hear how you think you can improve support for parents and siblings.

We have spent much of the past two weeks discussing the healthcare needs of children with developmental disabilities, but healthcare professionals also need to recognise that parents themselves may need support.

In this presentation, Nathaniel Scherer (LSHTM) discusses the demands placed on parents of children with developmental disabilities and the impact these demands can have on parents’ mental health and wellbeing.


Having watched the presentation above, consider:

  • In this presentation, we have focused on caregiving on a parent’s mental health. What other impacts can caregiving have? Think on the video in the previous step from Carers Worldwide.

  • If you are a parent or carer, what support would you like to receive from healthcare professionals?

  • If you are a healthcare professional, can you share any useful tips on providing support to parents? What has worked well in the past?
  • What helps you to provide this support?
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Integrated Healthcare for Children with Developmental Disabilities

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