Development and validation of the health competence beliefs inventory in young adults with and without a history of childhood cancer.

BACKGROUND: Adolescent and young adult survivors of childhood cancer are a vulnerable population. Health beliefs may be related to necessary follow-up care. PURPOSE: This study seeks to develop a measure of health beliefs for adolescents and young adults with and without a history of cancer. METHODS: Inductive 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. RESULTS: A 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. CONCLUSIONS: The Health Competence Beliefs Inventory is a promising measure of adolescent and young adult perceptions of health and well-being.

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.

Psychosocial and spiritual needs of children living with a life-limiting illness.

Quality end-of-life care includes the management of distressing symptoms; provisions of care, including the assessment and management of psychosocial and spiritual needs; and respite from diagnosis through death and bereavement. Meeting the palliative care goal of improved quality of life depends on medical and nursing practitioners understatnding and effectively assessing psychosocial symptoms.

Compassion fatigue in pediatric palliative care providers.

The experience of compassion fatigue is an expected and common response to the professional task of routinely caring for children at the end of life. Symptoms of compassion fatigue often mimic trauma reactions. Implementing strategies that span personal, professional, and organizational domains can help protect health care providers from the damaging effects of compassion fatigue. Providing pediatric palliative care within a constructive and supportive team can help caregivers deal with the relational challenges of compassion fatigue. Finally, any consideration of the toll of providing pediatric palliative care must be balanced with a consideration of the parallel experience of compassion satisfaction.

Evidence-based assessment, intervention and psychosocial care in pediatric oncology: a blueprint for comprehensive services across treatment.

OBJECTIVE: This paper describes the translation of psychological research into clinical services in pediatric oncology, based on two decades of research and clinical services in the Division of Oncology at The Children's Hospital of Philadelphia (CHOP). METHOD: Two models helpful in conceptualizing clinical care underlying intervention work at CHOP are summarized: The Pediatric Psychosocial Preventative Health Model (PPPHM; Kazak, 2006) and the Medical Traumatic Stress Model, specific to pediatric illness and injury (Kazak, Kassam-Adams et al., 2006). RESULTS: Integration of these two models offers a "blueprint" for development and evaluation of services to children with cancer and their families relevant for all families across the complete spectrum of disease and treatment. CONCLUSION: The dissemination of evidence-based psychosocial practice in pediatric oncology remains a large and challenging goal. The proposed blueprint may facilitate collaborative work to help assure that children with cancer and their families have access to evidence-based care.

Hopeful thinking and level of comfort regarding providing pediatric palliative care: a survey of hospital nurses.

OBJECTIVE: The purpose of this work was to test the hypothesis that individual nurses' level of hope is associated with greater self-reported comfort and competence in providing palliative care. METHODS: We conducted a Web-based cross-sectional survey at the Children's Hospital of Philadelphia, a large referral hospital, during the spring of 2005 with all of the employed nurses. The response rate was 44% (410 of 932 eligible nurses). The questions were adapted from published studies or written for this study regarding nurses' knowledge, attitudes, practices, and experiences regarding various aspects of palliative care. We used the Adult Dispositional Hope Scale. RESULTS: Respondents, asked to rate their degree of agreement (+2, strongly agree to -2, strongly disagree) with the statement that they were "comfortable working with dying children and their families," reported a mean score of 0.5. Regarding whether they "find it very difficult to talk about death and dying with children and families," the mean score was -0.1. Nurses specifically reported feeling most competent regarding pain management and least competent regarding talking with children and families about dying. After multivariable adjustment, greater number of years in nursing practice, more hours of palliative care education, and higher scores on the Hope Scale, each were significantly associated with higher levels of comfort working with dying children and the families, lower levels of difficulty talking about death and dying, and higher levels of palliative care competency. CONCLUSIONS: Nurses' level of hope is associated with their self-reported comfort and competence regarding palliative care.

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

BACKGROUND: 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. PROCEDURE: One hundred eighty-two survivors of pediatric malignancies, ages 18-37 years old completed a psychiatric interview and self-report measures. Survivors were >or=5 years from diagnosis and >or=2 years from the completion of cancer treatment for a variety of cancers. RESULTS: Nearly 16% of the sample had PTSD. Most survivors reported re-experiencing symptoms. There were no significant differences between survivors with and without PTSD on demographic or disease and treatment variables. Survivors with PTSD reported more psychological problems and negative beliefs about their illness and health status than those without PTSD. A logistic regression model predicted 50% of the variance in PTSD. CONCLUSIONS: PTSD affects a subset of young adult cancer survivors. These survivors experience more psychological problems in general. Beliefs about the cancer experience are more potent predictors of PTSD than demographic or disease and treatment factors. Screening for PTSS and PTSD in cancer survivors is recommended.

Feasibility and preliminary outcomes from a pilot study of a brief psychological intervention for families of children newly diagnosed with cancer.

OBJECTIVE: To report initial feasibility and outcome from a pilot study of a new three-session intervention for caregivers of children newly diagnosed with cancer, Surviving Cancer Competently Intervention Program-Newly Diagnosed (SCCIP-ND). METHOD: Nineteen families (38 caregivers) were randomly assigned to SCCIP-ND or treatment as usual subsequent to learning of their child's illness. The study design included pre- and 2-month postintervention assessments, with state anxiety and posttraumatic stress symptoms as outcomes. Feasibility was based on therapist feedback and supervision, program evaluations, and data from study-tracking procedures. RESULTS: SCCIP-ND appears to be an acceptable intervention that can be used successfully with caregivers over the first few months after diagnosis. Recruitment and retention data document feasibility but also highlight challenges. Preliminary outcome data show changes in the desired direction [e.g., reduced anxiety and parental posttraumatic stress symptoms (PTSS)]. CONCLUSIONS: The pilot data are supportive of the value and challenges of developing evidence-based family interventions in pediatric psychology.

Pediatric palliative, end-of-life, and bereavement care.

The pediatric hospitalist plays an integral role in providing palliative, end-of-life, and bereavement care for children and families. This article focuses on a multifaceted approach to this domain of care in which the physician is a key member of an interdisciplinary team. We believe that we can improve quality of life and relieve suffering only by paying attention to the medical, emotional, spiritual, and practical needs and goals of dying children and their loved ones.

Cancer-related parental beliefs: the Family Illness Beliefs Inventory (FIBI).

OBJECTIVE: The goal of this study was to develop a reliable and valid method for assessing the cancer-related beliefs of parents with a child in treatment for cancer. METHOD: One hundred twenty-five families (119 mothers, 56 fathers) completed a measure of cancer-related beliefs written to reflect common themes associated with the diagnosis and treatment of childhood cancer. Participants also completed self-report questionnaires used for validation of the Family Illness Beliefs Inventory (FIBI). RESULTS: Principal-components analysis was used to derive a 41-item five-factor solution from the maternal data--Factor 1: Treatment-Related Suffering; Factor 2: Death and Devastation; Factor 3: Caregiver Competence; Factor 4: Connection; and Factor 5: Finding Meaning. Correlations with validation measures supported the factor structure. Paternal data showed similar patterns. CONCLUSIONS: The FIBI is a psychometrically sound method for identifying parental cancer-related beliefs. This measure may be helpful in developing and evaluating interventions to reduce parental distress related to childhood cancer and promote adaptive family functioning.

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.

Posttraumatic stress disorder (PTSD) and posttraumatic stress symptoms (PTSS) in families of adolescent childhood cancer survivors.

OBJECTIVE: To describe rates and concordance of posttraumatic stress disorder (PTSD) and posttraumatic stress symptoms (PTSS) in adolescent childhood cancer survivors and their mothers and fathers. METHOD: Participants were 150 adolescent survivors of childhood cancer, 146 mothers, and 103 fathers who completed the Impact of Events Scale-Revised, the Posttraumatic Stress Disorder Reaction Index, and the PTSD module of the Structured Clinical Interview for the Diagnostic and Statistical Manual of Mental Disorders, fourth edition. RESULTS: PTSS are common in families of childhood cancer survivors. Parents reported more symptomatology than former patients. Mothers and fathers had relatively equal rates of current PTSD and levels of PTSS. Nearly 30% of mothers met diagnostic criteria since their child's diagnosis, with 13.7% currently experiencing PTSD. Nearly 20% of families had at least one parent with current PTSD. Ninety-nine percent of the sample had at least one family member reexperiencing symptoms. CONCLUSIONS: Both PTSD and PTSS help in understanding the experience of adolescent cancer survivors and their families. Within families of childhood cancer survivors, it is likely that some member may be experiencing treatable bothersome memories, arousal, or avoidance specific to the cancer experience.

Salivary testosterone and body composition among Ariaal males.

To determine if testosterone is negatively related to acute and/or chronic nutritional status among men in a subsistence society, saliva samples and anthropometric measures were compared among nomadic and settled Ariaal pastoralists of northern Kenya. Fifty-six nomadic men and 62 settled men facing drought conditions, estimated ages 22-96 years, were sampled. Measures included height, weight, four skinfolds, and %body fat by bioelectric impedance (BIA). Saliva samples were assayed for testosterone using radioimmunoassay. Overall, both body mass index (BMI) (avg. = 17.8 +/- 6.0 kg/m(2)) and salivary testosterone (T) levels (avg. am value = 176.8 +/- 74.8 pmol/l) were low compared to values from Western populations. Comparison of the two subpopulations revealed no significant difference in height, weight, BMI, or lean body mass. However, nomadic males exhibited significantly smaller skinfolds. Evening, but not morning, salivary T values differed between the subpopulations. Age-related changes in body composition included a significant decline in BMI with age, related to loss of body fat, but with little change in lean body mass. Age-related declines in BMI and %body fat were more pronounced among the nomadic males. am salivary T values declined with age; again, the decline was significantly greater among nomadic males. pm salivary T levels showed no significant decline with age. When controlled for residence and age, salivary T was positively related to %body fat and WHR ratio, but not lean body mass. These results provide evidence that salivary T is related to acute nutritional status among males in an energetically stressed subsistence population, in accordance with life history theories of somatic allocation.

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.

Family systems practice in pediatric psychology.

OBJECTIVE: To present a pediatric psychology consultation treatment framework based on family systems and developmental theories. METHODS: After reviewing background relevant to family systems interventions, a five-step protocol (referral, assessment, collaboration, outcome) for consultation is presented, using case examples from our pediatric oncology service, to illustrate joining, focusing, promoting competence and collaboration with patients, families, and staff. RESULTS: Using protocols based on family systems frameworks, pediatric psychologists can offer systems-oriented consultation to patients, families, and healthcare teams. CONCLUSIONS: Further development and evaluation of family systems protocols are necessary to understand the efficacy of these approaches and their role in training and practice.