Parental Narratives of Children with Leukemia in the Second Week after the Diagnosis: The Ecocultural Family Interview-Cancer

The family system is an important and proximal factor for children with cancer. Parents are facing wrenching changes in their lives. Nonetheless, most reports in the literature on short- and long-term psycho-social consequences of childhood cancer on children and their families are drawn from questionnaires completed by the parents and/or doctors and nurses. In this report, we use a narrative, guided conversational method, the Ecocultural Family Interview-Cancer, to provide evidence from parents in their own voices, concerning their experiences early after the diagnosis, during the first hospitalization. We identified 98 topics and themes from 128 interviews with parents of children with leukaemia at first hospitalization, and then combined those into a smaller set of 11 psychometrically robust global dimensions. Spearman inter-rater reliability in identifying items for these dimensions was high. The EFI is a promising research tool for systematic mixed method inquiry into family experiences and accommodations during difficult health crises.

[1]  M. Pillon,et al.  Eliciting Adaptive Emotion in Conversations with Parents of Children Receiving Therapy for Leukemia , 2011, Journal of psychosocial oncology.

[2]  G. Altoé,et al.  Parental perceptions of health-related quality of life in children with leukemia in the second week after the diagnosis: a quantitative model , 2011, Supportive Care in Cancer.

[3]  T. Weisner,et al.  “Let Me Just Tell You What I Do All Day…”: The Family Story at the Center of Intervention Research and Practice , 2007 .

[4]  C. Eiser,et al.  Children's Behaviour Following Diagnosis of Acute Lymphoblastic Leukaemia , 2007, Clinical child psychology and psychiatry.

[5]  D. Skinner,et al.  Sociocultural studies of families of children with intellectual disabilities. , 2007, Mental retardation and developmental disabilities research reviews.

[6]  T. Albrecht,et al.  Parent communication and child pain and distress during painful pediatric cancer treatments. , 2006, Social science & medicine.

[7]  M. Pillon,et al.  Parental narratives of quality of life in children with leukemia as associated with the placement of a central venous catheter. , 2005, Journal of pain and symptom management.

[8]  W. Hwang,et al.  Posttraumatic stress symptoms during treatment in parents of children with cancer. , 2005, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[9]  R. Woodgate,et al.  A Different Way of Being: Adolescents' Experiences With Cancer , 2005, Cancer nursing.

[10]  Sara Scrimin,et al.  Conversational strategies with parents of newly diagnosed leukaemic children: An analysis of 4880 conversational turns , 2005, Supportive Care in Cancer.

[11]  P. McGrath,et al.  Beginning treatment for paediatric acute myeloid leukaemia: diagnosis and the early hospital experience. , 2004, Scandinavian journal of caring sciences.

[12]  W. Hwang,et al.  Identifying psychosocial risk indicative of subsequent resource use in families of newly diagnosed pediatric oncology patients. , 2003, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[13]  P. Ward-smith,et al.  Quality of Life among Childhood Leukemia Patients , 2003, Journal of pediatric oncology nursing : official journal of the Association of Pediatric Oncology Nurses.

[14]  A. Kazak,et al.  Families and Other Systems in Pediatric Psychology. , 2003 .

[15]  G. Axia,et al.  Quality of Life, Coping Strategies, and Family Routines in Children with Headache , 2002, Headache.

[16]  M. Dixon-Woods,et al.  Parenting in a crisis: conceptualising mothers of children with cancer. , 2002, Social science & medicine.

[17]  Thomas S. Weisner,et al.  Infant stress reactivity and Home Cultural Ecology of Italian infants and families , 2002 .

[18]  P. Sloper.  Predictors of distress in parents of children with cancer: a prospective study. , 2000, Journal of pediatric psychology.

[19]  D. Guthrie,et al.  Predicting posttraumatic stress symptoms in mothers and fathers of survivors of childhood cancers. , 1998, Journal of the American Academy of Child and Adolescent Psychiatry.

[20]  Jonathan A. Smith,et al.  Rethinking Methods in Psychology , 1995 .

[21]  T. Weisner,et al.  Ecocultural assessment in families of children with developmental delays: construct and concurrent validities. , 1994, American journal of mental retardation : AJMR.