Guest editorials

We are inviting guest editorials from families, members of our care team, and others who work or write on issues that affect us. If you wish to contribute to this series, please send a short outline of your proposed guest editorial to info@dsdfamilies.org

Guest Editorial nr 6, Nov-Dec 2012, Growing up and then adding DSD to the mix.

By Caroline Sanders, Consultant Nurse, Alder Hey Children’s Hospital, Liverpool.

Understanding and being able to care for children and their parents, young people and adults with DSD requires a life course approach, something I have become increasingly aware of in the last 17 years of providing nursing care and support to children, young people with DSD and their parents. Adolescence can, at times, be a difficult part of the journey towards adulthood. It can be a time of uncertainty and worry, during which young people want to be like their friends, while trying to work out who they are and what they may want out of their lives. The complexity of having DSD can be challenging for children but add it to the mix of emotions and physical changes occurring during adolescence and it can be overwhelming. Young people with DSD face very real challenges: they are moving towards a stage in their lives where they may have more questions about themselves, be curious about things that have not previously concerned them and be wondering about where and from whom to seek information and advice.

The prior interactions young people with DSD have had with health professionals may have been positive or negative. In order to understand their condition, young people often have to learn how to do ‘medical talk’; some choose to explore everything they can with others taking it more slowly , deciding they are not yet ready to know everything. Currently, disclosure and openness are core values in health care; there is a drive to ensure that all information is shared with young people before they leave children’s services when they are often around the age of eighteen. This blanket approach may or may not be right as it is, perhaps, too early to know the consequences of telling all young people ‘everything’. Determining the timing of when to tell young people is as important as how and who tells them. Currently there is limited evidence to guide us about how to do this in practice. Professionals often assume that parents will and/or are able to fill in the gaps in their adolescent’s knowledge, stories and memories. This may not always be the case and open and honest discussions need to occur between parents and professionals about their confidence in talking to their child about DSD and its implications for the parents and relationship with their child. Ensuring that emotional and psychological support is available for young people and their parents is variable across the UK and something of a post code lottery; this seems unfair. We also know that even when psychological support is offered to young people or families it is not always accessed and we should be asking why and how we as professionals can address this.

While some young people with DSD can feel isolated others are vocal and expressive and happy to articulate their needs; trying to deliver services that can meet everyone’s needs can be difficult. As the care team we need to reflect on how often we spend time listening to what young people with DSD want and whether we are truly aware of what their needs are. We also need to consider whether we provide them with opportunities to team up with the professionals they like, so that they can get to know them and trust them over time. From other areas of study it is evident that young people communicate better with professionals they know well, especially those they have ‘grown up with’. When these links are lost, for example at the time of transition, or when there is a lack of continuity in care, young people can be left feeling let down and may struggle to re engage.

Young people have opinions, perspectives and ideas and we need to work with them in order to deliver good care. We have to try to find ways in which, together with young people, they can identify what is important to them and articulate how we can be helpful. Young people have to have opportunities to develop confidence, ask questions and feel safe when talking with their families or professionals. Perhaps with the aid of support groups, web sites and interactive technologies we could develop systems that allow young people access to information at times that are important to them.

I have always been amazed at the resilience of the young people I have met with DSD. The young people I have had the opportunity to get to know as they have grown into young adults are inspirational. I admire their resourcefulness and together we have shared stories. They have talked about the times health care has disappointed them or when it has help to transform them. As a result of having one point of contact, in this case, me as their nurse, many have made friends with other young people with DSD they have met along their journey. More recently involving young people with DSD in my research has been illuminating. They have guided and challenged my thinking and encouraged me to question my beliefs. In turn I am hopeful that as the findings of these studies are published their stories and perspectives will be well received and heard, within the wider medical and affected community.