Exploring pain among young people who have completed treatment for acute lymphoblastic leukemia: experiences of youth and caregivers.

PURPOSE: Acute lymphoblastic leukemia (ALL) is the most common cancer diagnosed among individuals <14 years of age. The disease and its treatments are associated with negative side effects, including pain, which is both prevalent and distressing. Little is known about pain experiences in this population, which has slowed efforts to identify strategies to mitigate and cope with this adverse effect. This study sought to explore youth's and their caregiver's experiences with, and perspectives of, pain in the context of pediatric cancer treatment. METHODS: Youth and one of their caregivers were recruited through (omitted for peer review). Following completion of a demographic survey, youth and one of their caregivers were interviewed separately using a semi-structured, one-on-one interview guide. Demographic information was analyzed with descriptive statistics, and interviews were transcribed verbatim and analyzed using reflexive thematic analysis. RESULTS: Youth (n = 19; Mage = 15.3 years) and caregiver (n = 19; Mage = 45.4 years) perspectives informed 4 themes: (1) my pain experience is nuanced, multidimensional, and is changing over time; (2) the cancer experience has changed the way I experience and respond to pain; (3) I used strategies to manage pain, and not all of them worked; and (4) my pain experience was influenced by people around me. CONCLUSIONS: Findings extend prior work, suggesting that pain is common, distressing, multidimensional, and influenced by social context. Results highlight the number of ways in which youth and their caregivers attempt to manage their pain and factors influencing pain experiences. Greater efforts are needed to address pain during cancer treatment and survivorship.

The pain of survival: Prevalence, patterns, and predictors of pain in survivors of childhood cancer.

OBJECTIVE: Survivors of childhood cancer experience late effects as a result of their cancer treatment. Evidence for the prevalence of pain as a late effect has been equivocal. This study aimed to describe the prevalence and patterns of pain and biospsychosocial variables that may be related to pain in this population. METHOD: Survivors of childhood cancer (n = 299; 52.5% male; median age = 16.1[4.6-32.6] years; years off therapy = 9.1[2.0-23.7]) were included. Survivors completed a health assessment questionnaire as part of their long-term survivor clinic appointment (median = 3.0 appointments, range = 1.0-7.0) annually or biannually between 2014 and 2017 (Time 1-Time 4). Prevalence of pain was examined and latent class analysis (LCA) was used to identify patterns of pain based on longitudinal reports of pain. Binary logistic regression examined biopsychosocial variables at Time 1 (T1) associated with class membership. RESULTS: Forty-seven percent of survivors reported pain during at least one clinic visit. Headaches were the most prevalent type of pain (26.4%). Survivors of Wilms' Tumor and Ewing's Sarcoma reported the highest prevalence of pain (51.5% and 50.0%, respectively). LCA revealed two clinically relevant profiles: "infrequent or no pain" (74.3%) and "persistent pain" (25.7%). Logistic regression showed that female sex (odds ratio, OR = 2.69, 95% confidence interval, CI [.99, 7.31]), depressive symptomatology at T1 (OR = 2.27, 95% CI [1.31, 3.94]), and drinking to intoxication at T1 (OR = 3.07, 95% CI [1.03, 9.15]), were related to persistent pain. CONCLUSION: Pain is prevalent among survivors of childhood cancer. Future research should characterize the experience of pain in this population so interventions may be developed. Assessment of pain during regular long-term follow-up appointments is warranted. (PsycInfo Database Record (c) 2021 APA, all rights reserved).

Pain in long-term survivors of childhood cancer: A systematic review of the current state of knowledge and a call to action from the Children's Oncology Group.

Survivors of childhood cancer may be at risk of experiencing pain, and a systematic review would advance our understanding of pain in this population. The objective of this study was to describe: 1) the prevalence of pain in survivors of childhood cancer, 2) methods of pain measurement, 3) associations between pain and biopsychosocial factors, and 4) recommendations for future research. Data sources for the study were articles published from January 1990 to August 2019 identified in the PubMed, PsycINFO, EMBASE, and Web of Science data bases. Eligible studies included: 1) original research, 2) quantitative assessments of pain, 3) articles published in English, 4) cancers diagnosed between birth and age 21 years, 5) survivors at 5 years from diagnosis and/or at 2 years after therapy completion, and 6) a sample size >20. Seventy-three articles were included in the final review. Risk of bias was considered using the Cochrane risk of bias tool. The quality of evidence was evaluated according to Grading of Recommendations Assessment Development and Evaluation (GRADE) criteria. Common measures of pain were items created by the authors for the purpose of the study (45.2%) or health-related quality-of-life/health status questionnaires (42.5%). Pain was present in from 4.3% to 75% of survivors across studies. Three studies investigated chronic pain according the definition in the International Classification of Diseases. The findings indicated that survivors of childhood cancer are at higher risk of experiencing pain compared with controls. Fatigue was consistently associated with pain, females reported more pain than males, and other factors related to pain will require stronger evidence. Theoretically grounded, multidimensional measurements of pain are absent from the literature.

"It's Just for Us!" Perceived Benefits of Participation in a Group Intervention for Siblings of Children With Cancer.

Objective: This qualitative substudy aimed to investigate the outcomes of sibling group interventions from the perspective of siblings of children with cancer and their caregivers. Method: Siblings were randomized to receive the Siblings Coping Together intervention (SibCT) or attention control (CG). In all, 30 participants, 18 siblings (average age = 11.89 years, 9 CG and 9 SibCT) and 12 caregivers (4 CG and 8 SibCT), were interviewed following group participation. SibCT consists of eight 2-hr manualized sessions delivered weekly; in each session, it combines arts and crafts and cognitive-behavioral strategies structured around a specific theme (family or school). The CG is structured only around arts and crafts. Interviews were analyzed using content analysis. Results: Themes common to both groups included the following: having a group just for siblings, improving family relationships, and feeling reassured of parental role. Themes unique to the SibCT group included the following: learning program targets, increasing self-confidence, feeling less different, and connecting caregivers and siblings through homework. Themes unique to the control group included the following: being a good helper and being in the hospital for positive reasons. Conclusion: This study uncovered additional intervention effects not captured in quantitative measures. Whereas benefits were noted in both groups and speak to the importance of support for siblings in general, positive personal and relational changes unique to siblings in the SibCT group and their caregivers support the importance of specific interventions focused on problem-solving siblings' issues.

Feasibility of group intervention for bereaved siblings after pediatric cancer death.

This study evaluated the feasibility (acceptability, recruitment, retention rates, treatment fidelity, and outcome measures) of implementing a manualized group intervention for bereaved siblings after pediatric cancer death. A convenience sample of 10 siblings participated. The intervention consisted of eight 2-hour sessions that focused on strategies for coping with grief, relationships, and emotional growth. Positive outcomes were obtained with respect to acceptability, recruitment, retention rates, and treatment fidelity. Preliminary outcomes were mixed. Parent pre- and post-intervention outcomes suggested improvements in siblings' overall emotional and social quality of life. Siblings' self-reports reflected no improvements. These data support the feasibility of conducting this intervention and suggest beneficial outcomes based on parental reports. Further research is recommended to evaluate the group intervention efficacy with a large sample using a randomized controlled trial to address the needs of bereaved siblings.

The Emotional Experience and Perceived Changes in Siblings of Children With Cancer Reported During a Group Intervention.

PURPOSE/OBJECTIVES: To examine the experiences and perceived changes in siblings of children with cancer while participating in a group intervention program. 
. RESEARCH APPROACH: Repeated observations during group participation and content analysis. 
. SETTING: A tertiary pediatric health center in Ontario, Canada.
. PARTICIPANTS: Twenty-two siblings (aged 7-18 years) of children with cancer. 
. METHODOLOGIC APPROACH: Siblings participated in the Siblings Coping Together program, an eight-week group intervention designed for this population. Data consisted of materials completed by siblings (49 homework sheets, 33 pieces of artwork), and 31 logs recording events within group sessions. 
. FINDINGS: Three categories emerged from the data. CONCLUSIONS: These findings provide rich insight into siblings' own views of changes in themselves and within the family, as well as the perceived benefits of group participation. 
. INTERPRETATION: Methodologically, this study demonstrated that the inclusion of visual materials as data is a valid methodology for future research. Clinically, these findings can help nurses in their daily care of children with cancer and their families.