Maggie’s Centre: A Quality and Evidence Researcher
For my Leadership in Action (LiA) project, I decided to create my own project, by seeking out organisations involved in providing healthcare and medical-related support. As a student enrolled in an oncology BSc, I was interested in utilising my knowledge and skills to support these charities and create a long-lasting sustainable positive impact in these fields. Therefore, I contacted Maggie’s to organise a project and collaborate with them to conduct research and provide input on setting up an evaluation program and providing feedback on current programs. Maggie’s is a charity organization founded by Maggie Keswick Jencks, a writer, gardener, and designer, to provide psychological and social support for people with cancer. Through her own experience of her breast cancer diagnosis and its subsequent return in 1988 and 1993, Maggie believed that with encouragement, informational, social, and emotional support in a welcoming and positive environment, people may change the way they live with cancer. Maggie’s centres provide psychological, social, and informational support in partnership with hospitals to improve the quality of life for people affected by cancer and encourage them to live their lives to the fullest.
During my time with Maggie’s centre, I worked with their data quality and evidence team to work on their pre-habilitation and living with ongoing cancer programs. The living with ongoing cancer program focuses on providing financial, emotional, informational and psychological support for individuals with cancer and their families who had a prognosis fewer than 18 months. During my time with Maggie’s, I hoped to provide scientific rationale and insights via a literature review on unmet needs, bereavement, grief, loss, depression, therapy methodology and quality of life measuring instruments. Throughout the six weeks, I investigated the impact of psychological and emotional distress at end of life for individuals with cancer and their families or friends. This may include existential crises, anxiety, fear, worries, depression, and pre-loss grief. Additionally, I explored the impact of bereavement on caregivers and families or friends of individuals with cancer. My work culminated in an extensive thirty-five-page report and resource database of over a hundred sources for Maggie’s to review. I also proposed optimal therapy methodologies, discussed current gaps in social and psychological support in the United Kingdom, available methods of finding support and also provided a short report on the value of Maggie’s in providing support to individuals at the end of life and their families or friends.
In addition to a literature review on the psychological needs and support of individuals with cancer and their family or friends, I also conducted research on quality-of-life instruments utilised to evaluate changes in psychological and general health. The goal is to provide an informed database of quality-of-life instruments to aid in the selection of an instrument to evaluate their programs at Maggie’s. Therefore, I created a report and database of literature on multiple general instruments, psychosocial instruments and oncology instruments. This report culminated in a recommendation and final selection of two quality of life instruments to evaluate the success and impact of Maggie’s programs on individuals with cancer and their families or friends at the end of life.
In addition to my research reports and databases to provide insight and selection, I have also created surveys and their associated data analysis programs to allow the implementation of my research in the future. I created surveys that incorporated both quality of life instruments, as well as feedback and demographic information for programs at Maggie’s. Finally, I also created automated spreadsheets to log and analyse data from participants of the survey.
Therefore, I am confident in the long-term impact of my work, as the evaluation process will take at least a year, while any insight from the process will inform any future changes. The information and literature support from my research will advise on how the projects are implemented and adapted in the upcoming years.
Throughout my time at Maggie’s, I gained unique insights into the dynamic and function of charity organisations, execution of research in a non-academic context and the psychological perspective of cancer. It was invaluable for me to learn about the real-world implementation of research, data collection, analysis and the impact of our work on people and their experiences in life.