Parents as advocates

I have three children each very loved; two were born with severe haemophilia, an X-linked genetic condition. At the time the first twowere born,myprofessional interests lay in criminal law. The experiences of my eldest son and second child, in particular, changed that trajectory to academia with a focus, inter alia, on the rights of children, health law, ethics and human rights more broadly. Recently, I was engaged in debate on national radio with a university academic.Wewere discussing National Health andMedical Research Council guidelines and potential changes to the laws surrounding sex selection. I was asked to relate my own extremely personal experience with sex selection. Rather than recognition of the excruciatingly exposing nature of such a discussion, I was met with a deliberately condescending pat on the head, ‘at least it was your choice’. In my experience, choice and options are very rarely the experiences of parents of childrenwith chronic health conditions. Rather, I would describe the experiences as more akin to those of Alice when she tumbled down the rabbit hole. There are doors that are too small that open upon amad hatter’s tea party. Rather than trying to work out how to avoid the queen of hearts offing your own head, however, the head you are trying to protect is that of your child. Not because the health professionals involved did not have my sons’ best interests at heart or because the care they offered was anything but the best. The reverse is true, and for that, I am exceedingly grateful. That care, however, was for him or to him, but not always with him. When Alex was first diagnosed, we were much more hospital based, and treatment was always in Emergency. He used to be wrapped in a sheet if he got distressed. I was not allowed to hold or comfort him. It changed Alex from a happy little boy into a boy who was scared of hospitals, needles and treatment. The transition to venepuncture was traumatic, and each intervention created a struggle to assert control and conquer fear. Throughout this time, we encountered many health professionals with their own perspective on how best to conduct any given procedure from cannulation to magnetic resonance imaging, each acting in what he or she considered to beAlex’s best interests. Onmanyoccasions, the need to achieve the end overtook the means of achieving it. The staff involved used various techniques including forceful holding down or pharmacological approaches such as midazolam or nitrous oxide. How much force is reasonable to hold down a traumatised 10-year-old boy who requires a life-saving operation but is so terrified of the gas andmidazolam, let alone the operation, which he would prefer to run away? Together, we went through years of therapy to redress this, and Alex is incredibly confident inmanaging his condition, but hospital will always be a place to avoid, irrespective of how much he likes his treatment team. With Hamish, we were given the courage to break from the traditional mould of treatment. He is much more relaxed about it because I was encouraged to be relaxed with him, to hold him andmake himmore comfortable andmake it an easy part of his life rather than a separate part. Unlike his elder brother, he slept through his first treatment cradled in my arms, and in subsequent early treatments, he sat cuddled on my knee while we sang songs. He asked for his port to be taken out at 3 (referring to his age), when Alex’s was removed for the final time, and he has had IV treatment since. Twelve years on and hospital remains a comforting place for Hamish where he feels, almost always, in control. Painmanagement for children undergoing procedures has traditionally focussed on how to achieve the end result for a particular event, rather than on the impact of the experience for the child for future events, potentially leading to a child’s anxiety and distress becoming a significant and continuing burden for the child, their family and those conducting the procedures. Increasing recognition of the role of parents through family-centred care is rarely consistently defined. Most often, what it means is left open to interpretation by whoever is conducting a procedure. Equally, a pharmacological approach to pain-free procedures denies the child control, often involves the some use of force by those entrusted with the child’s care and could be perpetuating trauma. A well-managed experience where the child feels in control and develops positive associations can lay the groundwork for future positive and efficiently conducted experiences. For me, the key to achieving this has been the music therapy workshops we attended when Hamish was 6months old, run by a music therapist and a paediatrician. Through song, talk and readings, I learnt the power of being an advocate for my child and the skills to achieve it. I discovered that my role in the treatment team required consistency and empathy, supplementing themedical expertise of those around me. As a parent, you are likely to be the only consistent person in the many interactions that a child with a chronic health condition has with a number of health professionals across a hospital. While family-centred care may provide the parent with a voice in the care of their child, the ability to see your role as advocate for your own child in a positive light gives you the power to be involved in their care in a supportive manner. This establishes a positive cycle of support and resiliencewhere the child feels secure. For me, there is considerable angst in knowing ‘if only’. The skills I learnt gave me the opportunity to create resilience and doi:10.1111/jpc.13255