My kite will fly: development of a program for working with parents with life threatening illness and their dependent children (3-9 years)

© 2015 Dr. Cynthia HollandRecent Australian estimates suggest that approximately 30,000 parents are diagnosed with cancer each year (Thursfield et al., 2013). Patient families evidence acute distress and vulnerability following a cancer diagnosis, and difficulties in communication around the realities of life threatening illness are commonplace. Prior research has identified the need for a brief resource tool for parents and children where there is accelerated malignancy (Turner et al., 2007, Turner et al., 2009, Turner et al., 2008). This study reports on the progress of the My Kite Will Fly program (MKWF), devised to offer multi-disciplinary staff a toolbox for families living in households with young children enduring parental cancer. The present study aimed to (i) replicate previously established findings that families enduring parental cancer suffer significant distress, vulnerability and disruption to family roles and routine, and (ii) determine whether the design template built for the MKWF appropriately addressed the needs of these families. Participants were a purposive sample of n=36 children (24 girls, 12 boys) drawn from 19 families who enrolled in the program either shortly after diagnosis, during treatments, or at palliative care. Data collection was divided into three distinct phases with assessment at diagnosis, treatment, and palliative care, though few families participated in all phases of data collection due to the variable demands of disease progression. Families completed a series of semi-structured interviews, MKWF workbook tasks, and art activities, at each of the three key phases. Each family member actively contributed to the compilation of commemorative hard copy and e-books. Program evaluation data was gathered from a subset of participants who evaluated the commemorative hard copy and e-books, and by exit interview. Quantitative and qualitative data were triangulated and analysed in compliance with descriptive case study methods. Six family case studies (n=13 children) were used alongside cross-case analyses of data gathered from all 19 families comprising 36 children in the study. Results from cross-case analysis highlighted five key themes encapsulating patient family concerns: (i) A new diagnosis – what happens next? Vulnerability and the experience of uncertain personal health; (ii) Consequences for others, how younger children understand illness developmentally, and reinforcing family wellbeing when children see too much; (iii) The valuing of roles and routine, planning ahead, and making the My Kite Will Fly contents a legacy; (iv) How to help when mum gets sick again and the hospital just can’t make it better; and (v) End of life decision and saying goodbye – how young is too young? Although program evaluation was preliminary with a small study population, findings suggest the MKWF program is a helpful resource for families living with advanced parental illness. The present study makes a significant contribution to Psycho-Oncology research by illustrating the concerns of parents and children subsequent to parental cancer diagnosis. It integrates theoretical knowledge and empirical findings in developing an innovative and efficacious therapeutic resource for parents and children facing accelerated parental malignancy. Despite the challenges associated with family participation and data collection, the present study provides a platform for future evaluative research of the program in patient family populations.