Skip to 0 minutes and 10 secondsSHEILA: I mean it's a long time ago. And I really hope that nobody would have this experience now. And it was a review at my child's special school. And the review was attended by the developmental paediatrician and the headmistress. And the class teacher wouldn't come to the review because we were going to be there. And soon after the meeting started, the headmistress turned to me and said "now just forget that you're a doctor. Take off your white coat. And remember that we know best about your child." I was astounded. How could she think she knew best about my child? How? How? You know? I had questions. I would have liked their answers to my questions.

Skip to 0 minutes and 57 secondsAnd I'm sure they had some knowledge that they can share. She said, "your child will never learn to speak. He will never do anything. Just get used to it."

Skip to 1 minute and 7 secondsCAROLINE: I had one consultant, a very senior consultant, who every appointment would just, for a second, just say, "and how are you?" And he was so kind. And we built such a good relationship and trust. I think it's his taking the time, just a little bit of kindness, a bit of understanding, that even if this parent looks quite together, chances are they've been up in the night. They're struggling with diagnosis. They're really under pressure. And I think recognising that the parent is the expert on their child. You're the expert in your field. But together, you both want the same thing.

Skip to 1 minute and 40 secondsSo building a relationship together so that if tests and operations are needed, you know, you've both got trust in each other. And I think that makes the whole process a lot easier.

Skip to 1 minute and 52 secondsLAMBERT: I have throughout this journey, most of the professionals have included us in every decision making, even in terms of going through the type of surgeries or the type of options that they think would be useful for my daughter. So yes, that is having that informed approach is very helpful. And one of the other strengths with my daughter is she's very determined. She's very vocal. She knows what she wants. So whenever we have consultations with the professionals, they also ensure that they ask her, they speak to her, you know, so that to involve her and take her opinion.

Skip to 3 minutes and 1 secondSHEILA: Ask questions of the parents. "What is it that would help?" Open-ended questions-- "tell us about, tell me about what is going well, what isn't going well." Listen to them first. Listen to them and find out what are the issues. And then find out when you are able to share some information about what you think will help. Ask them, "what's your priority? From what I've told you, we could do this. We could do that. This would enable this to happen. That might enable that to happen. Do you want to try that?" What is a priority for you? What's going to make the most difference in your view?" Work in partnership.

Skip to 3 minutes and 40 secondsThis is, I think, increasingly understood as being how to really, really help.

The importance of trust and equal partnership between families and healthcare professionals

Throughout childhood and adolescence, children with developmental disabilities and their parents can interact with a wide range of health and social care professionals, across a number of specialised services.

The quality of these interactions is important for the family’s quality of life and their ability to provide supportive, nurturing care to their child.1 For most parents, a positive parent-health professional relationship should be a “partnership”, in which there is respect, good and honest communication, and mutual trust.

Partnership

Previous models of parent-health professional interactions were centred on a professional’s “expert” position within healthcare services.2 From this position of knowledge and superiority, professionals dispense solutions, answers and treatments. In this model, healthcare professionals were not considering the role of parents and the child’s lifestyle circumstances, although they had good intentions for the child. This paternalistic approach failed to recognise that parents have a strong desire to become well-informed about their child’s condition and that parents are in many ways really the experts about their children. Despite not having the same level of medical knowledge, parents spend much of the day with their own child and have an unprecedented understanding of their communication, health and wellbeing.

Contemporary best practice now recognises that care is much more effective when it combines the specialised clinical knowledge of healthcare professionals and the overwhelming contextual and personal knowledge of parents. Parents and children should not be seen as only the recipients of the healthcare professional’s expertise, but rather as equal partners in the goal to improve the child’s health and quality of life.

A young child is lying down in a cot. © Holt International

Principles of effective partnership

An effective partnership includes the active involvement of both the parent and healthcare professional at each stage of care.

Mutual understanding

To build a partnership and relationship, a healthcare professional must get to know details about a parent’s living situation, values and beliefs. This context not only helps form the bonds of partnership, but it gives a healthcare professional important information on their challenges, views about disability, treatment and intervention. With this information, healthcare professionals can tailor conversations to a family’s needs.

Acknowledgement of expertise

Both a professional and parent have their area of expertise. In an effective partnership, these skills complement one another. Without a parent’s input, a healthcare professional cannot hope to translate their clinical expertise into practice, whilst the healthcare professional has the clinical knowledge which the parents need to support their child.

Shared planning and decision-making

Equal partnership means that both healthcare professionals and parents are active decision-makers. Collaboration is paramount. Parents are too invested in their child to simply comply with a healthcare professional’s direction. They will have their own views and opinions which must be valued, respected and used to inform a child’s treatment pathway. By being active in the decision-making, parents will be more likely to adhere to prescribed interventions at home.

A boy is pointing at a picture card being held up by a woman. © CBM/Foto Backofen Mhm

Agreement

Healthcare professionals need to help parents understand what is being done and why it is being done. By encouraging parents in discussion, asking them to share their aspirations, aims and objectives, decisions can be jointly agreed and understood. It is important that both the healthcare professional and parent understands their role and expertise, so to avoid overlap and conflict.

Trust and respect

Underpinning all of these principles is the recognition that partnership is built on respect, good and honest communication, and mutual trust. Professionals and parents must be honest and sensitive with each other. The partnership should be focussed on what is best for the child.

It’s important to remember that a partnership is not going to develop overnight, it will require time and effort from both the professional and parent. By participating together in this process, parents have the opportunity to increase their confidence and knowledge, improving their ability to manage their child’s care and tackle future difficulties.3

A girl with cerebral palsy sitting in a wheelchair and smiling. Metekai (7) on his way to receive physiotherapy in Kajiado, Kenya. © CBM

Involving children with developmental disabilities in decision-making

We have discussed the partnership between the professional and the parent, but this omits the most important contributor to the healthcare process - the child.

The Convention on the Rights of the Child and the Convention on the Rights of Persons with Disabilities explicitly state a child’s right to express their views and engage in their decision-making.4,5 Children with developmental disabilities should not be passive recipients of healthcare interventions and discussions. They should be supported and guided to input into the decision-making process, as much as possible and in keeping with their personal capabilities. This will become increasingly important as a child ages, especially once they begin to consider the transition to adult services.

Healthcare professionals and parents need to explain the condition to the child, and discuss their aspirations, future goals and possible fears. Children with developmental disabilities are not a homogenous group and healthcare professionals must view each child as the individual they are, not as a health condition to be diagnosed and treated. A recognition of competence and capacity will allow parents and healthcare professionals to engage a child in this decision-making process with care and protection. Children with developmental disabilities may not be able to understand all messages, especially if complex, and they may require adapted communication techniques in order to overcome the difficulties presented as a result of their impairment (we will discuss this in greater detail in the next step). Some children may also benefit from the use of communication tools, which can help them understand a new healthcare scenario.

Take a look at the ‘See Also’ section below to see an example of such a communication tool – the ‘Books Beyond Words’ series offers a set of picture books for individuals with intellectual impairments and communication difficulties. The books are designed to empower children and adults, and help them learn about a new situation, whilst giving the reader the opportunity to discuss their thoughts and feelings.

Share this video:

This video is from the free online course:

Integrated Healthcare for Children with Developmental Disabilities

London School of Hygiene & Tropical Medicine