We are excited to share a guest blog from Louisa Williams, who recently has completed some important research into the effects of PWS on family members. Louisa, whose own brother has PWS, wanted to cover the important topic but give it a more personal approach than other studies in the past. With the help of the PWS Community Louisa’s research won a University prize and is now on it’s way to being published. Find out more from Louisa herself…
PWS has always been at the centre of my life, growing up with a younger brother with Prader Willi Syndrome. Naturally it also became the centre of my family’s life too, with everything we did together being centred around food and trying to help any problems that could happen when we left the house. I saw from a young age not only how PWS affects the individual with the syndrome but also how it ripples out to the caregivers too, and how often in my personal experience with my family can be really challenging to cope with.
When picking my A levels during covid I felt really lost and confused about what i wanted to do with the rest of my life (as most 16 year olds do!), but this was further complicated by having to ask myself what I wanted which I had never really done due to helping my brother being at the centre of my life. To be quite honest, I chose psychology on a whim as I was not sure what else to do. I had always been quite inquisitive about why people behaved and thought the way they did and what drives our actions, so it seemed like an OK fit for the time. Looking back, I am really glad I made this decision, and it absolutely was the right one as I got to know myself more when I grew up. It led me to conduct my research today and my career now.
University was a great experience for me; it allowed me to see what life was like outside the home and I could really discover who I was outside of my caring responsibilities. When my final year of my Undergraduate degree rolled around, and they were giving us a choice of what to research out of a big long list of topics, none of them really interested me (that and I hate being told what to do!) so I asked to do my own research on PWS. I knew it was under researched in general, and I knew even more so that caregivers in this population are incredibly under researched, I thought that light needs to be shed on this. We all cherish our loved ones that we care for, and I know myself and my family would never change my brother for the world, but nonetheless we do experience burden because of our responsibilities that are tenfold the strain and responsibilities of caring for a ‘typical’ child. I have seen my parents on countless occasions fighting for something- funding, residential placements, respite, the list goes on, and while fighting for all this support for my brother, they never had any professional support offered to them. I watched firsthand the toll this took on my parents, and myself as a child at the time. It really did affect the whole family, parents, siblings, grandparents who worry about their own ‘child’ having to navigate through the PWS pathway.
Therefore, I went round the professors at my university and asked if they would support me in conducting a personal research project, presenting to them why it would be beneficial and a massive gap in research to investigate. I was very lucky to end up with Dr Eden Morley supervising me in my research project, who was amazing with helping my apply to ethics, organising the focus group questions, writing the project, the list goes on. Without her input this project would not exist or be good!
When I began researching previous literature on the topic of ‘caregiver burden’ experienced by families with PWS I realised that the research that did exist was mostly statistics. While this is really informative, I noticed that the research on caregiver burden in PWS was stuck in the loop of identifying that we as a population are ‘stressed’, have a ‘decreased quality of life’ and need additional support but we were not hearing from the caregivers in their own specific words. This led me to take a qualitative approach to the research, where I collected narratives from all my participants to really capture how they thought and felt rather than turn this into numbers. I was also mindful that PWS is a very large spectrum, affecting every individual family differently. I didn’t feel the uniqueness was represented in the numerical data published at the time.
The main aim of my research was to identify how caregiver burden affected the entire family unit. This included parents, siblings, grandparents, aunts, and uncles. I wanted to demonstrate and show that caregiver burden also surpasses the immediate family and has a ripple effect to other individuals who may be supporting the primary caregivers. I wanted my research to complement the existing statistical data and form the basis of extra help that we may need as a community. In a nutshell, I wanted to show how hard everyone works and provide insight into the challenges of PWS while highlighting the positives too. E.g i know for me, without having my younger brother, I probably would not be in my career I am now, or be half as empathetic, or understanding.
When I began recruiting participants, posting adverts into the Facebook page with the help of people working for the PWS I received positive feedback! Everyone was happy to hear research was being conducted on the caregivers. When I sent out the onboarding questionnaire so I could organise meetings, over 35 people signed up so I had to create more focus group slots which was amazing! The focus groups were really productive; all the participants were chatty and happy to share their experiences. It was a nice forum to share stories and experiences to individuals who can really understand.
When I finished the focus groups, I printed off all the transcripts and saw that we had all managed to chat for 100,000 words which I was thrilled with. However, combing through all of this and finding themes was challenging but really rewarding to be able to physically handpick topics that stretched across all the groups and really get into the nitty gritty of how caregiver burden can affect PWS families. I spent about 3 days on my bedroom floor at University with what felt like millions of slips of paper with stories on. There is quite a funny picture of me curled over on my rug organising them all that my roommate took of me (I looked shocking so will spare you all!). I found that this process was also therapeutic for me, I didn’t realise how rewarding it would be to make all these links and see that my family’s experience was shared by so many others. It also gave me hope for the future to hear from families further ahead in their journeys than ours at the time.
Unfortunately, until I officially publish, I can’t share massive amounts about what I specifically found but I think we can all take a guess that caregiver burden really affects most facets of a family’s life. It also affects each member of the family similarly, but differently too. I know personally as a sibling I was affected, but less than my parents because I was five when my brother was born and was used to that way of life. I know as a community we know how PWS can affect us and our whole family, and I really did not want to repeat this over and over again in my research because we are the ones that really know the depths and impacts, so I hope that when you read my research I have captured it in a good way without repeating what we already know. I also won the ‘Newson prize’ in my year group at University for conducting an outstanding piece of developmental research. It was amazing to be recognised for all of our hard work in the focus groups and showing that all PWS families have a lot of important things to say and that we should be listened to.
I hope that in the future I can do more extensive research on this topic, as I had a very limited amount of time to conduct and write it all up. I would also love to do a video breaking down what I found. It’s things we all know, but I hope it will be informative to the local authority/ government, and other researchers conducting more on caregiver burden. The publishing process is also a very long road I have discovered, lots of editing and lots of finding a journal that wants to include your research, if it fits in with what they want at that point in time. Maybe one day I’ll do a PhD and be able to have a larger impact and centre my career around caregiver burden, but I’m testing the waters of the psychology world at the moment- I’m currently working in a secure forensic psychiatric hospital.
Finally, I would like to thank every single participant that participated in my study. Your lives, stories, thoughts and feelings are so valuable and informative. I really hope that I have done this justice, and that you enjoy reading the research. All the participants that took part were so chatty and wonderful, it was truly brilliant to have such open discussions about PWS. It was also amazing to talk about the joy that our loved ones with PWS give us too, and how we love them. I can’t put into words how thankful I really am.