The Perceived Influence of Neurofibromatosis Type 1(NF1) on the Parents' Relationship.

Neurofibromatosis type 1 (NF1) is a genetic condition affecting 1 in 3000 individuals. Having a child with a chronic illness can introduce both practical and emotional challenges to a parental relationship. This cross-sectional study was administered to 50 parents of children with NF1, diagnosed between the ages of 1-24. Each participant was provided a 50-item self-report survey to complete during an inpatient or outpatient visit. The survey gathered information on the participants' views of the spouse/partner relationship, coping mechanisms, and elements that supported emotional connections. While the majority of parental relationships were reported to remain strong, the mean relationship quality was perceived to have decreased compared to prior to the child's diagnosis. Compassionate and open communication, shared perspective, having time alone with their partner outside of medical situations, and dyadic coping were identified as strategies that could strengthen the relationship. The identified stressors to the parental relationship during the NF1 illness trajectory can inform interventions and help guide development of a couple's intervention. The National Cancer Institute, NIH Institutional Review Board approved this study (12-C-0206).

The Needs of Adolescents and Young Adults with Chronic Illness: Results of a Quality Improvement Survey.

Adolescent and young adults (AYAs) with chronic illnesses cope with complex issues that require unique psychological support and healthcare services to reduce psychosocial difficulties, improve disease management, and facilitate positive transitions to adult care. Engaging patients and caregivers can help providers understand the specific needs of this population and identify the perceived areas of support. The purpose of this quality improvement initiative is to assess the needs of AYAs with chronic medical conditions at a large government research hospital. Eighty-nine AYA patients (age = 23.5 years; range 13-34) with neurofibromatosis type 1, cancer, primary immunodeficiencies, or sickle cell disease, and a sample of caregivers (n = 37, age = 52 years; range: 41-65), completed an anonymized survey that assessed their preferences for a wide range of informational and service-related needs. The results indicate an overwhelming desire for information about general health and wellbeing and disease-specific medical knowledge. The most endorsed item was the need for more information about an individual's medical condition (72%), which was a primary concern across disease, racial, and gender groups. Demographic and disease-specific needs were also identified. Thus, providing information to AYA patients and caregivers is a critical and largely unmet component of care, which requires the development and implementation of targeted educational and psychosocial interventions.

End of life communication among caregivers of children with cancer: A qualitative approach to understanding support desired by families.

OBJECTIVES: Clinicians and parents are encouraged to have open and honest communication about end of life with children with cancer, yet there remains limited research in this area. We examined family communication and preferred forms of support among bereaved caregivers of children with cancer. METHODS: Bereaved caregivers were recruited through a closed social media group to complete an online survey providing retrospective reports of end of life communication with their child and preferences for communication support from health-care providers. The sample of 131 participants was mostly female (77.9%; n = 102) with an average age of 49.15 (SD = 8.03) years. Deceased children were of an average age of 12.42 years (SD = 6.01) and nearly 90% of children died within 5 years of diagnosis. RESULTS: Most caregivers spoke with their child about their prognosis (61.8%; n = 131) and death (66.7%; n = 99). Half of children (48%; n = 125) asked about death, particularly older children (51.9% ≥12 years; p = 0.03). Asking about dying was related to having conversations about prognosis (p ≤ 0.001) and death (p ≤ 0.001). Most caregivers (71.8%; n = 94) wanted support to talk to their children. Fewer wanted providers to speak to children directly (12.2%; n = 16) or to be present while caregivers spoke to the child (19.8%; n = 26). Several themes emerged from a content analysis of open-ended responses regarding preferences for provider support. SIGNIFICANCE OF RESULTS: Most caregivers discussed issues pertaining to end of life irrespective of demographic or medical factors. Qualitative themes provide insight into support desired by families to help with these difficult conversations.

The acceptability of screening for suicide risk among youth in outpatient medical settings: Child and parent perspectives.

OBJECTIVE: Psychosocial providers in medical settings are increasingly being asked to identify suicide risk in youth with medical illnesses. This pilot study aimed to determine the acceptability of suicide risk screening among youth with cancer and other serious illnesses and their parents. METHODS: Youth ages 8-21 years presenting to an outpatient medical setting were screened for suicide risk using a modified version of the Ask Suicide-Screening Questions (ASQ) screening tool. Patient and parent perceptions of acceptability were collected. FINDINGS: The sample included 32 patient/parent dyads. The overall positive screen rate was 9.4% (n = 3/32). Most patients (75%; n = 24/32) and parents (84.4%; n = 27/32) reported that medical settings should screen young patients for suicide risk. CONCLUSIONS: Suicide risk screening was acceptable to most patients and parents in a pediatric clinic. IMPLICATIONS FOR PSYCHOSOCIAL PROVIDERS: Medically ill patients are at risk for suicide. Universal suicide risk screening using a validated measure can provide meaningful clinical information to patients' families and providers and has the potential to save young lives.

Helping parents prepare for their child's end of life: A retrospective survey of cancer-bereaved parents.

BACKGROUND: Most parents vividly recall the weeks, days, and moments preceding their child's death for years to come. Dissatisfaction with communication about their child's condition and lack of guidance can contribute to stress prior to a child's death. Based on findings from a study assessing the degree of preparation bereaved parents received and our collective clinical experience, the authors provide suggestions on end-of-life communication and guidance for parents. METHODS: Caregivers of a child who died from cancer were invited to complete a 46-item survey through a closed social media (Facebook) group ("Parents who lost children to cancer"). In four months' time, 131 bereaved caregivers completed the survey. Results were analyzed using descriptive statistics, chi-square analyses, and a thematic content analysis framework. The mean age of the child at the time of death was 12. RESULTS: Approximately 40% of the parents in this study felt unprepared for both the medical problems their child faced and how to respond to their child's emotional needs; fewer than 10% felt very prepared for either. Parents were more likely to feel unprepared when perceived suffering was high, highlighting the critical importance of communication and support from the healthcare team as an adjunct to optimal symptom control. CONCLUSIONS: Through quantitative and open-ended responses, this study identified specific medical and emotional issues about which parents wanted greater preparation. Future research to evaluate guidance strategies to reduce parental suffering prior to the child's death is needed.

Comparing Parent and Child Self-report Measures of the State-Trait Anxiety Inventory in Children and Adolescents with a Chronic Health Condition.

Anxiety symptoms in children and adolescents with a chronic health condition have been estimated as high as 40% lifetime prevalence. Clinicians often rely on parent/caregiver information to supplement or substitute child self-report related to pediatric physical and mental health. We developed a caregiver proxy version (STAI-P) for the State-Trait Anxiety Inventory (STAI) State Anxiety Scale that was compared with a child self-report version in 201 parent-child dyads to evaluate its utility in measuring state anxiety in chronically ill youth. For patients aged 7-12, self-reports of state anxiety were moderately associated with parent distress and health provider-reported functional status, but negatively associated with parent STAI-P scores. For patients aged 13-17, self-reports of state anxiety were significantly associated with STAI-P scores, parent distress, and health provider-reported functional status. The STAI-P parent version may be a useful tool in identifying and addressing anxiety symptoms in youth living with a chronic health condition.

Participation in Online Research Examining End-of-Life Experiences: Is It Beneficial, Burdensome, or Both for Parents Bereaved by Childhood Cancer?

It is important for the health care community to understand the impact of a child's death on parent functioning. Yet involving bereaved parents in research that enquires about such a stressful time in their life can potentially bring harm to them. The current study examines the perceived benefit and burden of parents participating in a survey exploring their perceptions of their child's end-of-life (EoL) and bereavement experiences. Parents whose child died from cancer or complications of cancer treatment were invited to complete a survey developed by pediatric psychosocial oncology professionals with input from bereaved parent advocates through a closed social media (Facebook) group. One hundred seventy-eight parents of children aged 0 to 37 years at death (median age 12 years) participated. More than three quarters of parents reported at least "a little benefit" and half reported at least "a little burden" associated with participation. Less burden was perceived by younger and female parents, parents of younger children, those who had felt prepared to meet their children's emotional needs at EoL, and those not using bereavement services at the time of the survey. With the increasing use of social media as a source for bereaved parents to receive and provide emotional support, it is important for clinicians and researchers to understand the perceived benefits and risks of participating in research about EoL experiences via online recruitment. Our findings suggest that the benefit and burden of online research participation may vary for bereaved parents, but further research is necessary to replicate the findings and explore ways to optimize the use of this approach.

In good times and in bad: what strengthens or challenges a parental relationship during a child's cancer trajectory?

OBJECTIVES: To identify events during a child's cancer trajectory when parents perceived their marriage/partnership to be most strengthened and/or challenged. RESEARCH APPROACH: Using a cross-sectional qualitative design, participants completed a self-administered questionnaire addressing changes in their relationship during their child's cancer trajectory, including events perceived to strengthen/challenge their relationship, and recommendations for other parents. PARTICIPANTS: 192 parents of pediatric oncology patients across three institutions. Data were analyzed using qualitative content analysis. FINDINGS: Themes included relationship-specific, illness experience-related, and external supports/stressors that impacted the relationship. Dyadic strategies, empathic communication, and supportive behaviors strengthened the couple's relationship, whereas physical and emotional distance most commonly challenged the relationship. Recommendations to other parents included open communication, couple's connectedness, and use of external supports. INTERPRETATION: Offering psychosocial support and helping parents anticipate when their relationship can be strengthened/challenged can be an important part of ongoing care. Implications for psychosocial providers: Teaching communication and dyadic coping strategies can help parents manage stress and build cohesion.

Identifying Symptoms of Distress in Youth Living with Neurofibromatosis Type 1 (NF1).

Children and adolescents with Neurofibromatosis type 1 (NF1) are at increased risk for wide-ranging behavioral, developmental, and cognitive impairments and decreased quality of life. To date, no psychosocial screening tool has been developed to quickly assess the symptoms that 1) can be addressed during routine medical appointments in children with NF1, 2) can produce interpretable and actionable results, 3) can be integrated into medical care, and 4) can quickly identify patients at risk in order to better address that the provision of appropriate care are available. This study was conducted to test the overall usability of the Distress Thermometer (DT) and symptom checklist and concordance of DT ratings between pediatric patients, their caregivers and medical providers. Eighty youth (ages 7-21) living with NF1 completed the DT and an accompanying checklist. The findings of this study suggest the DT and symptom checklist was acceptable and feasible to complete in a clinic setting. A small subset reported high distress that required further assessment and intervention. Significant discordance between distress ratings of caregivers and children and healthcare providers was also found. Overall, the DT and accompanying symptom checklist provide important information to identify the presence of distress and contextualize the child's distress but is limited by not assessing whether these symptoms interfere with the child's daily life.

Preparing youth with cancer for amputation: A systematic review.

Children and adolescents who require limb amputation as part of cancer treatment face many physical and emotional challenges. Preparatory interventions may serve to facilitate positive coping and improve long-term adjustment during pediatric cancer treatment, including decreasing anxiety and postoperative distress. This review aimed to examine and identify the type and degree of psychosocial preparation provided to the child with cancer and family prior to amputation. Electronic databases including Embase, PubMed, and PsycINFO were searched for relevant research articles. Five studies were identified that satisfied inclusion criteria and revealed common themes for preparatory interventions, but results were limited by a lack of empirical approaches and revealed little consensus on pre-operative support prior to amputation. These findings demonstrate that there is a lack of studies to date that have adequately addressed psychosocial preparation prior to amputation for pediatric oncology patients. Future research on preparatory interventions is needed using prospective and quantitative research to establish evidence-based recommendations for interventions to support this vulnerable population.