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What to do when a parent wants to withhold information from a child or young person (CYP) about their health or care

This complex topic often comes up in our Me first masterclasses as an issue that health and social care professionals find challenging so we chose it as the topic for our December Twitter Chat. By coincidence the topic came up as a key theme discussed and acted out in a scenario at one of our masterclasses the week before so the timing felt very pertinent. The information shared below is a summary from the chat on 6th December 2017. All quotes are from people who participated.

The essence of this topic is a disagreement between professionals and parents and how we handle information sharing with CYPs. Differing opinions between professionals and parents are common but not easy to deal with well. There will be valid reasons behind each opinion and sometimes it may be appropriate to withhold information but often this may not be in the best interests of the CYP.

Statistics from the chat, December 2017

CYPs rights

 

The first question of the chat focused on the rights of CYPs.

 

The UN convention on the Rights of the child article 12 relates to CYP’s rights to express views in all matters affecting them. Tweeters commented that this isn’t possible if information is withheld from them. At Me first we aim to promote shared decisions with CYPs through CYP centred communication. Sharing responsibility can improve CYP experience and their health outcomes and promote access to healthcare in the future. CYPs need to know what’s happening to them in order to participate in decisions about their health and their care.

 

For further reading about CYP’s rights and consent, tweeters suggested looking to @ImeldaCoyne and Professor Alderson.

 

 

 “I read a paper that talks about the core needs of all patients…. to ‘know and understand’ what’s happening/our health etc. and to be ‘known and understood’ – so to know that professionals have sought and understood our views, values and preferences” Amy, YP

 

“Goodness it’s complicated stuff! Whilst parents may think they are acting in the best interest of a child… surely info about their health is a child’s right?” Kath Evans, Experience of care Lead, NHS England

 

When dealing with different opinions, in the first instance it’s helpful to gain an understanding of those differences to help move forwards in the best interests of the child. Acknowledging that everyone has a valid opinion and showing respect to each person involved is important for building trust and facilitating support.

It can also be helpful to explore thoughts and feelings in an open and honest way about there being a difference of opinion.   Otherwise it can be hard for people to accept or deal with.

 

“Honesty with all is key! And sharing that we are all aiming for what’s best for the CYP to help the parents, professionals and CYP work together” -Rachel, AHP

 

There are many reasons why a parent may prefer to withhold information from their child. For some parents it can be to do with anxiety about how the CYP will respond to the information or it may be about difficulty coping with their child’s distress. Perhaps these situations lead us into focusing more on what’s difficult or the risks of sharing information with a CYP and this may hinder us from thinking of the risks of not sharing information. For example, a CYP may feel scared and refuse treatment because they don’t know what’s happening to them. Sometimes it is right to withhold information but it’s important to always think through and justify why information shouldn’t be shared. Decisions should be made based on the needs of the child, not around the anxieties of parents and professionals or the challenges involved in having difficult conversations.

 

“I think there are other situations where it is withheld more for the needs of others. Not saying their needs aren’t important, but we should be clear about what’s for who.”……..

 

……..“We need to really think about whose best interests we’re thinking about when we withhold information – is it really in the best interests of the child? Or are we protecting ourselves from difficult conversations?”  -Kate, Common Room director & Me first Project Co-Lead

 

Healthcare professionals may find withholding information unethical and against their medical training. Professionals as well as parents may feel anxious about how the CYP will react. It can also be very difficult to share more information if they haven’t had a good experience of this previously. It can be worrying & daunting for all involved but if done well it can have positive results and reduce anxiety. This is particularly important as a CYP becomes older and more responsible for themselves.

 

Reminding the parent that we are also there to support the child and that we cannot do that effectively without being honest with them about what we are doing and why” -Cara, Nurse

 

There is also the distinct possibility that the CYP will find out the information from a different source in a less supported manner. Indeed sometimes the CYP already knows and are concealing this from their parents. CYPs may overhear things, hear stories from peers or use the internet to find further information which can lead to misinformation, confusion and increased anxiety.  This can create mistrust between the CYP and their parents or professionals. It is important to discuss with parents what might happen if the CYP learns this information accidentally and allow “time and space to think about the difficulties that not sharing information may cause” -Kate

 

Being explicit about why CYP centred communication is important can also improve parents’ understanding of why professionals may want to share more information with the CYP. Clarifying that putting the CYP first doesn’t mean ignoring the parents helps to build confidence and trust.

 

“….it’s not if but how we share information. So important to do it in a way that meets the individuals wishes and needs” -Kate

 The conclusion during the chat was that mostly, it’s a question of “how” not “if” we share appropriate information. However parents and professionals can struggle to know how to share responsibility with and empower CYPs. We’re trying to address this at Me first in a number of ways. One way we do this is by sharing ideas between young people, their families and professionals about their experiences in health and social care to learn from what does and doesn’t work in practice. Our Twitter chats are an extension of this learning and a number of top tips were shared in December.

Of course it’s crucial that information is shared in an appropriate and helpful manner, at an appropriate time and that this can be done in a gradual and supportive way. The age and stage of development of the CYP and level of understanding need to be factored in.

 

 

 

“I think it needs to be appropriate to that young person, their needs, level of understanding & communication. Also factor in issues such a metal health, anxiety.” -Deanne, parent”

 

What is the CYP’s preference? How much do they want to know and how should that information be shared?

 

All people regardless of age want to be treated fairly and with respect. Honesty and openness using good communication supports parents, professionals and CYPs to work together. We’re all different in what information we want to know and when at any age of life. Everyone should be treated as individuals and we should take care not to make assumptions about what is or isn’t helpful for someone.

 

“Open and honest communication… that means talking and listening and hearing; Not always easy.”

-Sian, Nursing service manager

 

Who is best to make all these assessments given the different perspectives and experience of those involved? -Joanna, Me first Project lead

 

CYPs can be underestimated and can often handle more information than we expect. I think there are ways of involving even younger people if done in a way that suits them when they’re ready for it.  It’s difficult to know who is best placed to judge what is said, when and by whom which is why it’s important for all parties to work together and to help CYPs to understand this and guide them through this process. Professionals and parents together can to find words that are helpful and a suitable time and setting to suit the CYP. Asking the CYP open questions about whether they want more information, when they want it and who they want with them for those conversations are all great ways to include the CYP in this.

 

CYPs might not realise there is an opportunity for them to be more involved if they haven’t been given one before. It’s also very difficult for them to speak up. Involving the CYP in the decision about how and when to provide information is key to getting this right. Providing time and support can help everyone involved explore issues in a sensitive and controlled way and help all to feel comfortable with the conversation.

 

CYPs often say things like “Do adults/HCP just think we magically learn to make choices and decisions when we’re 18? We need to learn to gradually how to do this” –Kate

 

Talking is only part of the conversation. Time and space to listen and process is crucial but can be very challenging with complex subjects and emotional situations!  -Rachel

 

“…acknowledge that everyone has a valid opinion and to involve the CYP in the decision making as to what is best for them” -Paula, School Nurse Team Manager

 

We’re often dealing with stressful and highly complex circumstances that can make the situation challenging and emotive for all. Good communication can help relieve anxiety & improve understanding for CYPs, parents and professionals. This is certainly not easy and our communication skills should not be taken for granted. A good starting point for how to have these challenging conversations is using the Me first communication model. Ongoing learning and practice alongside education & awareness of how to improve our skills regardless of our experience can make a big difference.

 

“I think the time & reflection that programmes like @CYPMefirst offer practitioners is vital to build our skills to handle these complex, yet very real (& frequent!) situations” –Kath

 

For the full transcript of the chat, or further information about our chats, go to our Twitter page or check out the Me first website for further information about the project.

 

“TY @CYPMefirst 4 a really insightful #CYPMefirst chat tonight – views from parents & YP have really enriched the conversation – good job”  -Kath


Rachel Naunton, Me first Project Developer

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