Background: Children with acute and chronic illness undergo frequent, painful, and distressing procedures. Objective: This randomized controlled trial was used to evaluate the effectiveness of guided imagery (GI) versus virtual reality (VR) on the procedural pain and state anxiety of children and young adults undergoing unsedated procedures. We explored the role of trait anxiety and pain catastrophizing in intervention response. Methods: Children and young adults were recruited from the hematology, oncology, and blood and marrow transplant clinics at a children’s hospital. Each study participant completed the GI and VR intervention during separate but consecutive unsedated procedures. Self-report measures of pain and anxiety were completed before and after the procedures. Results: A total of 50 participants (median age 13 years) completed both interventions. GI and VR performed similarly in the management of procedural pain. Those with high pain catastrophizing reported experiencing less nervousness about pain during procedures that used VR than those using GI. State anxiety declined pre- to postprocedure in both interventions; however, the decrease reached the level of significance during the VR intervention only. Those with high trait anxiety had less pain during GI. Conclusions: In our sample, VR worked as well as GI to manage the pain and distress associated with common procedures experienced by children with acute or chronic illnesses. Children who are primed for pain based on beliefs about pain or because of their history of chronic pain had a better response to VR. GI was a better intervention for those with high trait anxiety. Trial Registration: ClinicalTrials.gov NCT04892160; https://clinicaltrials.gov/ct2/show/NCT04892160
29 October 2018 in Journal of Psychosocial Oncology
Purpose: To (a) describe the decision-making experience and psychosocial outcome of sibling hematopoietic stem cell (HSC) donors, and (b) to determine the feasibility of completing a prospective and longitudinal assessment of HSC sibling donors at a single institution. Design: A mixed-methods approach was utilized. Sample and methods: 12 potential siblings HSC donors aged 10–21 years completed various psychological measures and participated in semi-structured interviews at three time points in the donation experience: pre-donation, within 1 week after the harvest procedure, and six months post-donation. Caregivers also completed parent-proxy measures. Findings: Qualitative analysis indicated donors want to make their own decision about donation but may not be given the option or may feel that there is no choice given their limited awareness of alternative options. Donors felt well prepared for the donation procedure but demonstrated a poor understanding of possible recipient outcomes. A minority of donors endorsed emotional distress prior to and after donation; however, this was not linked to recipient health. Forty percent of donors felt that they had inadequate support following their donation. Small sample size restricted quantitative data analysis. Conclusions and implications: Utilizing a donor advocate offers opportunity to work with donors to encourage decision-making tied to ideals rather obligation, increase education about possible recipient outcomes, and offer support at key times, such as when a recipient dies. Future research should include prospective multi-site studies.
The COVID-19 pandemic paved the way for the widespread use of virtual care for childhood cancer survivors (CCSs). CCSs were virtual recipients of diverse care, including long-term follow-up (LTFU), primary care, mental health care, and several others. Virtual care comes with well-documented benefits and challenges. These are further magnified for CCSs living in rural or non-metropolitan areas. Here, we describe the virtual care of CCSs from two Upper Midwest cities with well-established childhood cancer survivor programs within large comprehensive cancer centers in the United States. CCSs from non-metropolitan areas, especially CCSs with two or more late effects, used virtual care more often during the COVID-19 pandemic compared to CCSs from metropolitan areas. A review of the related literature is also included and the identified challenges in providing virtual care, such as privacy concerns, technology-connectivity constraints, and medical license restrictions. Despite these limitations, the care of CCSs has evolved to leverage virtual care and its ability to increase access for patients and promote continuity of care for CCSs living in rural areas.
21 January 2022 in Journal of Pediatric Hematology/Oncology Nursing
Background: Youth undergoing cancer treatment and hematopoietic stem cell transplant (HSCT) spend significant time in the hospital, which is disruptive to their physical, social, and emotional development. Therapeutic recreation (TR) can help individuals with an illness maintain or improve their health, quality of life, and physical functioning. TR is an understudied intervention, particularly with youth in the hospital setting. Methods: Forty-nine children (median age = 12 years, interquartile range [IQR] 11–15 years) hospitalized for cancer treatment or HSCT were assigned to participate in either the historical control or TR intervention. Participants wore a Fitbit charge HR for three days to measure movement. At the end of the study participation, they completed self-report measures of mood, social connectedness, and health-related quality of life. Results: Compared with historical controls, the TR intervention group had improved positive affect and decreased mood disturbance ( p = 0.03); had better sleep quality ( p = 0.003); and was more satisfied with the leisure activities offered in the hospital ( p = 0.01). There were no differences in the number of steps taken per day, somatic distress, cooperation with cares, or interaction with medical personnel or caregivers. Both groups reported poor availability and support of peer companions. Discussion: TR is one avenue to increase leisure activities and positively impact mood. More thought needs to be given to how TR programs can be leveraged to increase physical activity and social connectedness.
26 March 2014 in Journal of Clinical Psychology in Medical Settings
Given the barriers to conducting long-term assessment of neurocognitive and psychosocial functioning of those treated in infancy for central nervous system (CNS) tumors, a multi-site feasibility study was conducted. The primary objective was to demonstrate that it is feasible to identify, locate and assess the functioning of children treated on the same protocol 10-years post-treatment. Six sites obtained institutional approval, identified and recruited subjects, and obtained comprehensive neurocognitive and psychosocial data. All feasibility objectives were met. Barriers to participation included length of time for Institutional Review Board submission and review, clinical demands, limited eligible participants at individual institutions, difficulty locating long-term subjects and stipend/reimbursement concerns. Results indicate that long-term studies are feasible and essential given the need to address long-term issues of children treated at a young age for CNS tumors, especially as they relate to later academic and vocational planning, but require significant coordination and commitment of cooperative group and institutional resources.
(1) Background: Inadequate physical activity is an ongoing issue for pediatric survivors of childhood cancer and hematopoietic stem cell transplant (HSCT), increasing their risk for chronic health conditions and decreasing quality of life. Team Survivors is a 12-week program in which survivors train as a group to participate in a community triathlon. Preliminary findings from a quality improvement project of Team Survivors were used to assess its feasibility in influencing survivors’ physical activity and quality of life and their family’s perception of the program. (2) Methods: Repeated measures t-tests evaluated changes in caregiver-reported exercise self-efficacy and health-related quality of life (HRQoL). These findings were supplemented by a narrative review of qualitative data from caregivers and survivors on their overall experience and satisfaction with the program. (3) Results: All participants successfully completed the triathlon, and families reported satisfaction with the program’s logistics (i.e., coordination, coaching, and practice). Neither caregiver-reported exercise self-efficacy nor HRQoL significantly differed between pre- and post-intervention, but notable improvements were reported in all domains of HRQoL. Qualitatively, the perceived benefits reported by caregivers and survivors were multifaceted. Physical benefits included improvements in survivors’ physical activity level and endurance. Psychosocially, caregivers and survivors reported greater confidence and motivation for physical activity, improved coping, and increased social engagement and feelings of normalcy. (4) Conclusions: Mixed method results support the feasibility of Team Survivors in positively impacting survivors’ ability to engage in physical activity. The multifaceted structure of the program may more broadly impact psychosocial functioning in addition to physical activity. Future studies require a larger sample size to adequately power the analyses.