Mary T. Rourke

Treatment of posttraumatic stress symptoms in adolescent survivors of childhood cancer and their families: a randomized clinical trial.

Posttraumatic stress symptoms (PTSS), particularly intrusive thoughts, avoidance, and arousal, are among the most common psychological aftereffects of childhood cancer for survivors and their mothers and fathers. We conducted a randomized wait-list control trial of a newly developed 4-session, 1-day intervention aimed at reducing PTSS that integrates cognitive-behavioral and family therapy approaches--the Surviving Cancer Competently Intervention Program (SCCIP). Participants were 150 adolescent survivors and their mothers, fathers, and adolescent siblings. Significant reductions in intrusive thoughts among fathers and in arousal among survivors were found in the treatment group. A multiple imputations approach was used to address nonrandom missing data and indicated that treatment effects would likely have been stronger had more distressed families been retained. The data are supportive of brief interventions to reduce PTSS in this population and provide additional support for the importance of intervention for multiple members of the family.

Posttrauamatic stress disorder (PTSD) in young adult survivors of childhood cancer

Posttraumatic stress symptoms (PTSS) and posttraumatic stress disorder (PTSD) were assessed in young adult survivors of childhood cancer, including the role of four sets of variables in understanding PTSD in this population: demographic characteristics, disease and treatment factors, psychosocial and functional outcomes, and cancer‐related beliefs.

Identifying Psychosocial Risk Indicative of Subsequent Resource Use in Families of Newly Diagnosed Pediatric Oncology Patients

PURPOSE The primary purpose of this prospective study was to identify the level of risk for psychosocial distress in families of children newly diagnosed with cancer. Additional study aims were to examine concordance among family and staff reports of psychosocial risk, changes in risk status over time, and to predict the use of psychosocial resources during the first months of treatment. PATIENTS AND METHODS Caregivers of 125 children newly diagnosed with cancer completed the Psychosocial Assessment Tool (PAT) at diagnosis (t1) and 3 to 6 months later (t2). Primary oncologists and nurses completed an analogous measure of perceived family psychosocial risk at t1 and t2. At t2, oncology social workers reported types and intensity of psychosocial interventions provided. RESULTS The PAT identified three subsets of families who presented with increasing levels of psychosocial risk at diagnosis. In general, there was moderate concordance among family, oncologist, and nurse reports of psychosocial risk. PAT scores at t1 predicted t2 PAT scores and psychosocial resource use at t2 beyond demographic or disease factors. CONCLUSION A brief screening tool (PAT) is valuable in identifying psychosocial risk factors at diagnosis and is predictive of later use of psychosocial resources. As a next step in this research, the development of psychosocial interventions to match family risk level may be an effective and cost-efficient approach to working with families to address their concerns and promote short- and long-term adjustment.

Sperm Banking for Adolescent and Young Adult Cancer Patients: Sperm Quality, Patient, and Parent Perspectives

Infertility is often a complication for adolescent and young adult males who receive cancer therapy, a problem that might be averted through using cryopreserved sperm. We aim to evaluate feasibility of offering newly diagnosed patients the opportunity to bank sperm and, to determine the beliefs and decision‐making processes of patients and their parents who considered sperm banking.

Posttraumatic Stress in Survivors of Childhood Cancer and Mothers: Development and Validation of the Impact of Traumatic Stressors Interview Schedule (ITSIS)

This study presents initial data validating the use of a new instrument, the Impact of Traumatic Stressors Interview Schedule (ITSIS), to assess the occurrence of cancer-related posttraumatic stress in childhood cancer survivors and their mothers. Sixty-six child/adolescent cancer survivors and 64 of their mothers, as well as 130 young adult survivors, completed the ITSIS and other measures of posttraumatic stress and general distress. Five ITSIS factors were identified for the mothers and for the young adult survivors, and three ITSIS factors were identified for the child/adolescent survivors. Factors in all three samples reflected symptoms of posttraumatic distress, concern over medical late effects, communication, and changes in self due to cancer. Only young adult survivors had a factor reflecting a positive engagement with the cancer history. Factors correlated with validation measures in predicted ways. The findings further the conceptualization of posttraumatic stress in pediatric cancer by describing the traumatic experience for survivors and mothers. Comparing factors across samples allows an examination of different influences of cancer within families and over the course of development.

Theory of Mind Concepts in Children's Literature.

This study examined whether books that are typically read to preschool children contain theory of mind concepts. The parents of 47 preschool children recorded books read by or to their child over a one-week period. The books were analyzed for theory of mind content. It was found that 78% of the books contained internal state language, 34% contained false beliefs, and 43% contained personality descriptors. Thus, theory of mind concepts appear to be an integral part of the literature read to preschool children. These results are discussed in light of recent work on individual differences in theory of mind development.

Screening for depression and anxiety in adolescent cancer patients.

The goals of this study were to evaluate the feasibility of depression and anxiety screening in on-therapy adolescents with cancer, determine the prevalence of depression and anxiety in this sample, and assess the concordance between patient and oncologist report of patient symptoms. Forty-one adolescents (ages 12 to 18 y) undergoing cancer therapy in an outpatient oncology clinic completed the Beck Youth Inventory II (BYI II) Depression and Anxiety scales. Treating oncologists independently rated patient depression and anxiety. Ninety-eight percent of patients agreed to participate and average time to measure completion was <15 minutes. Mean T-scores for the BDI-Y (Depression module) and BAI-Y (Anxiety module) for most were not different than published norms. Three and 2 patients scored in the moderate-extremely elevated range of the BAI-Y and BDI-Y, respectively. There were no associations between scores and sex, age, diagnosis, time since diagnosis, or treatment intensity. A depression and anxiety-screening program is feasible in the outpatient pediatric oncology setting. Rates of adolescent self-reported anxiety and depression are low, although oncologists perceived more patient distress. This is an area for future investigation.

Identifying the Educational Needs of Parents at the Completion of Their Child’s Cancer Therapy

For parents of children with cancer, the experience of completing treatment can be a time of celebration and hope as well as anxiety and fear. Previous research has identified the time immediately following completion of therapy as one of the most difficult and anxiety producing periods in parents’ trajectory of cancer treatment. A gap in knowledge exists to guide nursing practice regarding parents’ educational needs. The purpose of this study was to (a) determine the educational needs of parents as their children completed cancer treatment and (b) assess the feasibility of measuring parental educational needs, anxiety, and family management styles as treatment ends. The results support previous findings that parents are anxious at the end of therapy. Fear of relapse was their primary concern. Although parents desire education at the end of therapy, attention to parental readiness to learn and the individual needs of the patient and family must be considered. In the feasibility portion of this study, parents were able to complete the questionnaires with no negative feedback provided.

Psychological Aspects of Long-Term Survivorship

Childhood cancer survivors and their families can be surprised by the realization that cancer does not end when treatment ends and that life does not automatically return to normal. As families manage the many transitions that accompany the end of treatment, they find that cancer survivorship has its own set of medical and psychological issues. Medical visits and monitoring continue – initially for disease recurrence and then for the emergence of medical late effects – and longer-term psychological reactions emerge. For these reasons, it is more accurate to conceive of cancer survivorship as a stage in a life-long chronic illness, rather than as an acute illness that ends with “cure” or the attainment of “survivorship” status [74]. The goal of this chapter is to provide an overview of psychological late effects of childhood cancer and present guidance for managing these effects.

Development and Validation of the Health Competence Beliefs Inventory in Young Adults With and Without a History of Childhood Cancer

BackgroundAdolescent and young adult survivors of childhood cancer are a vulnerable population. Health beliefs may be related to necessary follow-up care.PurposeThis study seeks to develop a measure of health beliefs for adolescents and young adults with and without a history of cancer.MethodsInductive and deductive methods and focus groups were used to develop the Health Competence Beliefs Inventory. Cancer survivors (n = 138) and comparison participants (n = 130) completed the Health Competence Beliefs Inventory and other measures. Healthcare providers reported current medical problems.ResultsA series of iterative exploratory factor analyses generated a 21-item four-factor solution: (1) Health Perceptions; (2) Satisfaction with Healthcare; (3) Cognitive Competence; and (4) Autonomy. Survivors reported significantly different Health Competence Beliefs Inventory scale scores than comparisons (p < .05). The Health Competence Beliefs Inventory was associated with beliefs, affect, quality of life, posttraumatic stress symptoms, and medical problems.ConclusionsThe Health Competence Beliefs Inventory is a promising measure of adolescent and young adult perceptions of health and well-being.