Parents as Advocates for the Psychosocial Survival of Adolescents and Young Adults with Cancer

Many young people with cancer have a parent or parents who care for them during their hospitalisation and treatment, and remain an important part of their lives after the ‘crisis’ has passed and young people have moved into survivorship. This qualitative study explored the impact of cancer diagnosis, treatment and survival during adolescence and young adulthood on the practice and experiences of parenting. We conducted focus groups with a total of 22 parents of young people diagnosed with various cancers between the ages of 11 and 19 years old. The results indicated that parents advocated for their offspring in different ways at different points of the cancer journey. Parents used their parental knowledge of their offspring to secure a medical diagnosis and treatment, developed medical knowledge to advocate for appropriate treatment within the medical system, and then used parental and medical knowledge to advocate for their offspring’s successful psychosocial survival. In this final point in the journey, parents entered social worlds from which they would normally be absent and some went to great lengths to ensure their offspring were not socially disadvantaged

Childhood experiences of cancer: An interpretative phenomenological analysis approach

Pediatric oncology has emerged as one of the great medical success stories of the last 4 decades. The cure rate of childhood cancer has increased from approximately 25% in the 1960’s to more than 75% in more recent years. However, very little is known about how children actually experience the diagnosis and treatment of their illness. A total of 9 families in which a child was diagnosed with cancer were interviewed twice over a 12-month period. Using the qualitative methodology of interpretative phenomenological analysis (IPA), children’s experiences of being patients with a diagnosis of cancer were explicated. The results revealed 5 significant themes: the experience of illness, the upside of being sick, refocusing on what is important, acquiring a new perspective, and the experience of returning to wellbeing. Changes over time were noted because children’s experiences’ were often pertinent to the stage of treatment the child had reached. These results revealed rich and intimate information about a sensitive issue with implications for understanding child development and medical and psychosocial treatment

Adolescents' and parents' experiences of managing the psychosocial impact of appearance change during cancer treatment

Using combined qualitative data from multiple case study interviews and an online survey, this study explored the impact of appearance change on 22 adolescents receiving cancer treatment aged 13 to 18 years and six of their parents. Data were analyzed using template analysis. Appearance changes were a major concern. Adolescents typically struggled to adapt to new experiences and concerns related to this highly sensitive issue. Many felt anxious and self-conscious and were reluctant to reveal appearance changes in public. These feelings were compounded by the negative reactions of others (e.g., staring, teasing, and inappropriate questioning), which sometimes lead to avoidance of social activity and threats of noncompliance. Parents of these children felt ill-prepared to manage appearance-related anxieties. Adolescents wanted support to develop the practical and social skills necessary to maintain a "normal" appearance and manage the negative responses of others. However, some adolescents showed resilience and, with support from friends and family, developed strategies to manage their altered appearance and its social consequences. These strategies are explored, which can inform interventions to support adolescents and parents. © 2010 by Association of Pediatric Hematology/Oncology Nurses