Simayedwa Ndhlovu Makhonjwa
WHEN a child is diagnosed with a disability or developmental condition, attention naturally shifts to the child — the treatment they may need, the therapies available, specialised education and the support required to help them develop.
But amid the consultations, assessments and care plans, an important question often goes unanswered: Who is looking after the emotional wellbeing of the parents?
Behind every child receiving a diagnosis is a mother, father or caregiver who may also be struggling to come to terms with a life-changing development.
For some parents, the news can trigger shock, denial, grief, guilt, fear and uncertainty about the future. They may question whether they did something wrong, whether the condition could have been prevented or who will care for their child when they are no longer around.
These emotions are often experienced privately, as parents are expected to remain strong and focus on their children’s needs.
Yet a disability diagnosis affects more than the child. It can reshape the emotional, social and financial circumstances of the entire family.
Parents may have imagined a particular future for their child, and receiving a diagnosis can force them to reconsider those expectations while adjusting to a new reality.
Research by Makino et al. (2021) highlights the emotionally intense experience parents may go through when their child receives an autism spectrum disorder (ASD) diagnosis.
Naicker et al. (2023) also identified grief, denial, shame and blame as recurring emotional experiences among parents of children with disabilities.
These feelings do not mean that parents love their children any less. Rather, they reflect the difficult process of understanding a diagnosis, confronting uncertainty and learning how best to support a child.
In many families, mothers carry a significant share of the daily responsibilities associated with raising a child with a disability.
They may be responsible for arranging medical appointments, attending therapy sessions, communicating with teachers, managing medication, providing daily care and advocating for their children’s needs.
In the process, their own emotional wellbeing can easily be overlooked.
Everyone wants to know how the child is progressing, whether therapy is working and whether the child is meeting developmental milestones.
But how often does anyone stop to ask the mother how she is coping?
Some mothers become so consumed by caregiving that they have little time or space to process their own emotions. They may feel guilty about expressing sadness, admitting exhaustion or acknowledging that the journey is difficult.
Society often expects parents of children with disabilities to be endlessly strong and positive. While encouragement is important, parents should also be allowed to express fear, frustration and grief without being judged.
A mother can love her child deeply and still feel overwhelmed. She can be grateful for her child while worrying about the future. She can accept the diagnosis and still have difficult days.
These feelings can coexist, and parents should not be made to feel ashamed of them.
This is where professional counselling becomes essential.
Counselling provides parents with a safe and confidential space to express their emotions, process grief, address unnecessary self-blame and develop healthy coping strategies.
It can also help families adjust to changing circumstances, strengthen communication and develop realistic expectations about their children’s needs and future.
Seeking psychological support should not be viewed as weakness. It is an important part of caring for oneself and ensuring that one remains emotionally equipped to care for others.
Evidence also points to the value of psychological interventions. Li et al. (2024), in a systematic review and meta-analysis of 25 randomised controlled trials involving 1 915 participants, found that cognitive-based interventions reduced parental stress, depressive symptoms, anxiety and psychological distress while improving parental wellbeing and parent-child relationships.
This reinforces the need to make counselling and psychosocial support accessible to parents rather than treating them as an optional addition to a child’s care plan.
Parental counselling does not take attention away from the child. Instead, it strengthens the environment in which the child grows and develops.
A parent who receives appropriate psychological support may be better equipped to understand the child’s needs, manage stress, communicate effectively and respond constructively to difficult situations.
The wellbeing of caregivers matters because children depend on them for emotional security, practical assistance and consistent support.
Naicker et al. (2023) also noted that parental adjustment to a child’s diagnosis can influence how parents perceive their child’s capabilities and shape the parent-child relationship.
This means that interventions focusing exclusively on the child risk overlooking an important part of the support system.
Although mothers often carry much of the caregiving responsibility, fathers should not be forgotten.
A child’s diagnosis can also leave fathers experiencing anxiety, uncertainty and emotional distress.
Some may feel pressure to remain financially and emotionally strong for their families, making it difficult to acknowledge vulnerability or seek professional help.
Cultural expectations can further discourage men from openly discussing their emotions.
Family support services should therefore recognise the experiences of fathers, grandparents and other caregivers who play important roles in raising children with disabilities.
Counselling should be available to the entire family, with support tailored to the different emotional and practical challenges each member may face.
Disability support must move beyond asking what a child needs and embrace a broader understanding of family wellbeing.
Healthcare professionals, psychologists, counsellors, teachers and social workers all have a role to play in ensuring that parents receive appropriate information and psychosocial support when a child is diagnosed.
Families should be informed about available counselling services, support groups and community resources. Professionals should also create opportunities for parents to discuss their concerns and ask for help without fear of judgement.
The principles of family-centred care recognise families as important partners in decision-making and emphasise the need to address their emotional, physical and practical support needs.
A simple question such as, “How are you coping?” can open the door to an important conversation.
A diagnosis should mark the beginning of support, not the end of the conversation.
The child may need therapy, specialised education and medical care. The parent may need counselling, while the family may require financial, social and emotional assistance.
These forms of support should complement one another.
Communities must create environments where parents can speak honestly about their fears without
being judged, where fathers can seek help without being told to simply be strong, and where mothers do not have to sacrifice their emotional wellbeing while caring for their children.
Beyond the diagnosis is a mother who may be carrying guilt.
Beyond the diagnosis is a father who may be struggling silently.
Beyond the diagnosis is a family learning to adjust to a new reality.
It is therefore important that disability services recognise the whole family rather than focusing exclusively on the child.
Let us counsel the child, support the parent and strengthen the family.
Because when we care for the caregiver, we also strengthen the care received by the child.
l Simayedwa Ndhlovu Makhonjwa is a Counselling Psychologist student, Ministry of Primary and Secondary Education, Matabeleland South province, studying Master of Science in Counselling Psychology, Great Zimbabwe University.
