RESUMEN
BACKGROUND: Transferring from paediatric to adult care can be challenging. Adolescents and young adults (AYAs) with chronic health conditions need to develop a specific set of skills to ensure lifelong medical follow-up due to the chronicity of their condition. The Transition Readiness Assessment Questionnaire-French version (TRAQ-FR) is a 19-item questionnaire measuring such skills. The aims of the study were to (1) describe participant characteristics and (2) identify constructs related to, and predictors of, having learned domain-specific transition readiness skills. METHODS: Participants included 216 AYAs aged 14-20 years (M = 15.93; SD = 1.35; 54.1% male) recruited from five outpatient clinics in a Canadian tertiary hospital. AYAs completed the TRAQ-FR, the Pediatric Quality of Life Inventory 4.0 (PedsQL) and a sociodemographic questionnaire. Descriptive, bivariate and binary logistic regression analyses were conducted. RESULTS: Overall, participants reported significantly higher scores on the Talking with Providers, Managing Daily Activities and Managing Medications subscales than on the Appointment Keeping and Tracking Health Issues subscales (F[41075] = 168.970, p < .001). At the item level, median scores (on a 5-point Likert scale) suggest that AYAs had begun practising five of the 19 skills (median scores ≥4; 'Yes, I have started doing this'), while a median score of 1 ('No, I don't know how') was found for one item ('Do you get financial help with school or work?'). At the subscale level, TRAQ-FR skills and skill gaps were related to AYAs' age, sex and PedsQL scores (ps < .05). CONCLUSION: Older and female AYAs were more likely to have begun practising specific TRAQ-FR subscale skills. Better psychosocial functioning was also related to having learned specific transition readiness skills. AYAs show several gaps in transition readiness. Targeted intervention in transition readiness skill development could take into account AYAs' age, sex and psychosocial functioning for a successful transfer to adult care.
Asunto(s)
Transición a la Atención de Adultos , Humanos , Masculino , Femenino , Adulto Joven , Adolescente , Niño , Calidad de Vida , Canadá , Encuestas y Cuestionarios , Enfermedad CrónicaRESUMEN
BACKGROUND: Pediatric cancer is associated with stressors that increase the risk for distress across family members. Psychosocial support varies and may not meet family needs and preferences. This study investigated family members' points of view regarding psychosocial service needs, as a first step of a large participative research project aiming to develop interventions grounded in key stakeholders' perspectives. METHODS: This study documented the perceptions of 370 parents, 11 siblings, and 60 individuals who themselves had received a cancer diagnosis as a child and employed a mixed-methods design through an online survey. RESULTS: Respondents indicated their key concerns were coping with intense emotions, accepting their feelings toward the diagnosis, and managing the psychological burden that accompanies cancer, its treatment, and associated life changes. CONCLUSION: The results suggest that an intervention program should address emotion management as well as interventions focusing on the entire family system.
RESUMEN
Objective: The objective of this article is to describe the process of implementing and performing a preliminary assessment of an innovative mental health nursing practice in a pediatric hematology/oncology department. The preliminary assessment will help us determine whether the implementation strategy used was appropriate. Background: Pediatric cancers present patients and their families with many difficulties that can sometimes give rise to mental health issues during and after treatment. A mental health nurse clinician with expertise in hematology/oncology could help patients and families experiencing such issues by providing care that complements currently available psychosocial services. As implementing changes in practice is often challenging, and introducing a role without a clear plan can lead to failure, we decided it was important to develop a clear implementation strategy. Our project, which involves creating the role of a mental health nurse clinician (MHNC) in pediatric hematology/oncology, is divided into three stages: (1) development of the MHNC role, (2) development of an implementation strategy and (3) evaluation of role feasibility, acceptability and appreciation one year after implementation. In this article, we discuss the second stage. The objectives of this article are to (1) present the strategy involved in implementing the role of the MHNC and (2) report on the findings of a preliminary post-implementation assessment of the feasibility, acceptability and appreciation of the role for exploratory purposes. Methodology: The implementation strategy we developed was based on the approach proposed by Fry and Rogers (2009) and adapted to the context of our project. The five steps of the approach are: (1) the communication strategy, (2) the consultative process to define the role and scope of practice, (3) education, (4) the establishment of a support structure and (5) assessment and feedback mechanisms. This last step took the form of a preliminary exploratory assessment, which we performed by administering a survey to nurses, specialized nurse practitioners, and doctors three months after the MHNC role was implemented. Results: In the results section, we present our detailed five-step implementation plan. The preliminary results of the survey administered three months following implementation indicate that the MHNC worked an average of 150 hours a month and carried out 22.7 consultations and 52.3 follow-ups per month, the average length of which was 53.1 minutes. In all, 96% of the healthcare professionals who responded to the survey said that someone with this type of expertise is needed in pediatric hematology/oncology, and only 28% said that they themselves felt they had the knowledge and skills required to effectively manage the medications used to treat mental health disorders. Conclusion: Our results seem to confirm the feasibility, acceptability, and appreciation of the MHNC role, suggesting that the implementation strategy proposed by Fry and Rogers (2009) is well suited to the development of a mental health nursing practice in pediatric hematology/oncology. In the third stage of this project, we will carry out a structured, rigorous assessment of the role's feasibility, acceptability, and appreciation by patients, families, and healthcare professionals one year after implementation.
RESUMEN
Introduction: Pediatric hematological and oncological illnesses present many coping challenges. Mental health issues can arise during and after treatment, in both patients and their families. The current model of care does not always seem to meet the needs identified by some young patients. In Quebec, nurses are allowed to assess and care for patients experiencing physical and mental health difficulties (Ordre des infirmières et infirmiers du Québec, 2016). Therefore, a mental health nurse clinician (MHNC) with experience in pediatric hematology/oncology could provide care that is complementary to that offered by psychologists, social workers, and other psychosocial professionals in the pediatric hematology/oncology unit in order to meet any needs that remain unmet. The MHNC project has three stages: (1) role development, (2) role implementation, and (3) role assessment one year after implementation. In this first article, we explain how the MHNC role was developed. Methodology: We used the participatory, evidence-based, patient-focused process for advanced practice nursing (APN) role development, implementation, and evaluation (PEPPA Framework; Bryant-Lukosius & Dicenso, 2004) to develop this model. The first five steps in the PEPPA Framework were applied in the creation of the MHNC role to (1) select the target population, (2) identify the stakeholders to be involved, (3) ascertain needs, (4) determine and prioritize problems and set goals, and (5) define a new model of care. Results: After multiple meetings involving numerous health professionals and managers, the MHNC role was developed with a versatile, transdisciplinary perspective to address better the needs of young cancer patients (especially those in their teens) and their families. The role was developed around four main areas of practice: (1) interventions offered to patient-family, (2) interventions offered to health professionals, (3) psychiatric consultation-liaison, and (4) education and research. Conclusion: The next steps are to use a strategic plan to implement the role and then to evaluate the impact of the role one year after implementation.
RESUMEN
Introduction: In February 2022, we introduced the innovative new role of mental health nurse clinician (MHNC) in pediatric hematology/ oncology in a pediatric hospital in Quebec with the aim of better addressing the needs of young cancer patients and their families. In two previous articles, we explained the method used to develop the role, as well as the strategy employed to implement it. Objectives: In this article, we seek to evaluate the effectiveness of the implementation strategy by measuring role feasibility. We will also examine role acceptability and appreciation 1 year following implementation. Methodology: We asked three groups of participants (adolescents, parents and care providers) to complete a research questionnaire based on the Theoretical Framework of Acceptability (TFA), with good inter-rater reliability and discriminant validity. The questionnaire, which was made available online, consisted of statements with Likert-scale responses (from 1 to 5), as well as open questions. We performed a standard descriptive analysis and used the responses to the open questions to support or add nuance to the quantitative results. Results: In total, 31 healthcare professionals, 10 adolescent cancer patients and 10 parents of adolescent cancer patients filled out the questionnaire. Between February 2022 and February 2023, the MHNC provided a total of 691 interventions to 112 individuals (patients and parents). Follow-up sessions were offered to 61 individuals, and 99.6% of them accepted. We found a very strong correlation (r = 0.96) between the number of hours worked by the MHNC and the number of interventions provided. The vast majority of participants from all three groups agreed that the role is appropriate, appreciated and necessary, and that it brings much-needed clinical expertise in mental health to the department. Care providers, adolescents, and parents indicated that they would request this service again and would recommend it to others, if it were needed. The results, therefore, demonstrate excellent feasibility and high levels of acceptability and appreciation. Conclusion: Our study shows that the implemented MHNC role helps improve the clinical management of the mental health of adolescents with cancer, as well as their parents. The role brings much-needed expertise in psychiatric nursing care and supports the clinical practice of care providers. Another study will be conducted in the near future to measure the effectiveness of the MHNC's interventions.
RESUMEN
OBJECTIVE: Psychosocial screening is a standard of care in pediatric oncology, but there is limited information about how to intervene after screening. This pilot trial aimed to determine feasibility of the novel Enhanced Psychosocial Screening Intervention (EPSI) and explore its preliminary efficacy outcomes. We examined rates of recruitment, retention, intervention acceptability, and monthly distress screening completion, as well as exploratory efficacy outcomes (Patient-Reported Outcomes Measurement Information System: depression, anxiety and fatigue; distress thermometer, pain and sleep). METHODS: Parallel-group randomized pilot trial: Caregiver-youth (10-17 years at enrollment, newly diagnosed with cancer) dyads were randomly allocated to either EPSI or standard care with 1:1 ratio allocation. EPSI consists of having a Psychosocial Navigator who shares screening results conducted near diagnosis and monthly for one year with treating teams and families, and provides recommendations tailored to screening results. RESULTS: Enrollment rate was 54% (38 dyads); retention was 90% and acceptability 86% (caregivers) and 76% (youth). Exploratory symptoms of depression, anxiety, distress and fatigue outcomes consistently improved mainly for caregivers. CONCLUSIONS: Results suggest EPSI is feasible and acceptable and exploratory mental and physical efficacy outcomes are promising for use in a future confirmatory multisite efficacy trial.
Asunto(s)
Cuidadores , Neoplasias , Adolescente , Ansiedad/psicología , Cuidadores/psicología , Niño , Fatiga/diagnóstico , Humanos , Neoplasias/psicología , Proyectos PilotoRESUMEN
BACKGROUND: Pediatric cancer diagnosis and treatment can have detrimental mental health effects on parents (caregivers) and their children/adolescents (youth). Psychosocial screening and intervention have been recognized as standards of care in pediatric oncology. The most effective psychosocial interventions to support those in need post screening have not been determined. AIMS: This qualitative study aimed to investigate the perceived benefits and challenges for caregiver and youth participants in the screening-intervention arm of an Enhanced Psychosocial Screening Intervention (EPSI) pilot study. METHODS: EPSI consists of a psychosocial navigator (PSN) who shares screening results conducted near diagnosis (T1) and monthly for 1 year (T2) with treating teams and families. All 17 caregiver-youth dyads who had completed EPSI were invited to participate in a semi-structured interview. RESULTS: Ten caregivers and nine youth participated. Identified themes were grouped into benefits and challenges of EPSI: feeling supported and cared for (support comes to us regularly, having someone to talk to); and feeling empowered through knowledge of resources and services were perceived as benefits. Caregivers were challenged by feeling overwhelmed, and youth by screening questions perceived as too repetitive. CONCLUSIONS: Regular monthly contacts for a year by the PSN with screening results and recommendations were perceived as beneficial by youth newly diagnosed with cancer and their caregivers who participated in EPSI. Feeling that support came to them and they had someone to talk to was a critical component. While information about psychosocial resources was not always used right away, it did evoke feelings of being empowered.
Asunto(s)
Neoplasias , Intervención Psicosocial , Adolescente , Cuidadores/psicología , Niño , Humanos , Oncología Médica , Neoplasias/diagnóstico , Neoplasias/psicología , Neoplasias/terapia , Proyectos PilotoRESUMEN
BACKGROUND: Pediatric brain tumor survivors (PBTS) are at risk of experiencing social competence challenges, but only a limited number of studies have used a qualitative approach to understand their social relationships. We examined PBTS responses to social interview questions within the Autism Diagnostic Observation Schedule, 2nd edition (ADOS-2), which includes questions related to their understanding of their own relationships, as well as the construct of friendship more generally. METHODS: Twenty-four PBTS (ages 9-17 years; M = 14.2 years from diagnosis; 50% male; 42% received radiation treatment) completed the ADOS-2. ADOS-2 social interview responses were recorded and transcribed verbatim. Themes were derived using an inductive thematic analysis approach. RESULTS: PBTS reported that they considered trust, acceptance, respect, emotional support, and spending time together to be important aspects of friendships in general. When describing their own social relationships, some PBTS noted a lack of intimacy or closeness, spending time with their friends almost exclusively at school, with structured activities outside of school being an additional basis for friendship. Challenges to their social relationships included loneliness and reliance on family for social support, experiences of teasing and bullying, social skills deficits, and lack of insight into social situations. CONCLUSION: Although PBTS were able to acknowledge many important qualities of friendships in general (e.g., trust, emotional support), these were not necessarily reported in their own friendships. PBTS also appeared to have difficulty identifying whether someone was their friend. These findings offer potential opportunities for supporting PBTS in achieving friendships consistent with their conception of this important relationship.
Asunto(s)
Trastorno Autístico , Neoplasias Encefálicas , Adolescente , Neoplasias Encefálicas/psicología , Niño , Femenino , Amigos/psicología , Humanos , Relaciones Interpersonales , Masculino , SobrevivientesRESUMEN
OBJECTIVE: The aim of this study was to examine whether maternal parenting behaviors (i.e., warmth, behavioral/psychological control) moderate the association between central nervous system (CNS)-directed treatment and adjustment among pediatric cancer survivors at 3 years post-diagnosis or relapse. METHODS: Three years after their child's cancer diagnosis or relapse, mothers (N = 84) reported on their child's academic and social competence, as well as their internalizing and externalizing problems. Children (N = 84; Mage = 13.21 years, 52.4% male) reported on maternal parenting behaviors. Using medical chart data, children were separated into CNS (i.e., received cranial radiation, intrathecal chemotherapy, and/or neurosurgery; N = 45) or non-CNS-directed treatment (N = 39) groups. Twelve moderation models were tested when examining two-way interactions between CNS treatment group and maternal parenting behaviors. RESULTS: Children in the CNS-directed treatment group demonstrated significantly worse academic and social competence. Moderation analyses revealed four significant two-way interactions between CNS treatment group and maternal parenting behaviors when predicting children's adjustment. High levels of maternal behavioral control buffered the negative impact of CNS-directed treatment on children's social competence. In addition, maternal warmth had a contrasting effect, as CNS-directed treatment was associated with worse academic competence at high levels of warmth. Analyses with psychological control revealed that low levels of this parenting style were not protective against internalizing or externalizing problems among those with CNS-directed treatment. CONCLUSIONS: Children who receive CNS-directed treatment may benefit from a different pattern of parenting during early cancer survivorship. Findings highlight the importance of considering the broader family context when conceptualizing the impact of illness-related factors on adjustment among pediatric cancer survivors.
Asunto(s)
Neoplasias , Responsabilidad Parental , Niño , Conducta Infantil/psicología , Femenino , Humanos , Masculino , Conducta Materna , Madres/psicología , Responsabilidad Parental/psicología , RecurrenciaRESUMEN
A pediatric cancer diagnosis can have a significant impact on the quality of life (QOL) of the child. Diagnosis and treatment impact caregiver anxiety/depression symptoms and family functioning, and these in turn may influence child QOL. However, there has been limited longitudinal examination of the impact of both caregiver anxiety/depression symptoms and family functioning on youth QOL at specific points during the early diagnosis and treatment period.Ninety-six caregivers of youth (diagnosed with leukemia/lymphoma or a solid tumor) reported on their own anxiety/depression symptoms, family functioning, demographic and medical factors, and on their child's generic and cancer-specific QOL shortly after diagnosis (T1) and 6 months later (T2).Caregiver anxiety/depression symptoms were associated with poorer cancer-specific and generic child QOL within and across time points. Family conflict was associated with youth cancer-related QOL at T1.Attendance to caregiver anxiety/depression symptoms and family functioning, beginning early in the cancer trajectory, is an important aspect of family-centered care. Routine psychosocial screening and triage may help identify and intervene to support both caregiver and child psychosocial well-being.
Asunto(s)
Cuidadores , Neoplasias , Adolescente , Niño , Humanos , Cuidadores/psicología , Calidad de Vida/psicología , Depresión/psicología , Ansiedad/psicología , Neoplasias/terapia , Neoplasias/psicologíaRESUMEN
OBJECTIVE: Despite calls to increase prognosis communication for adolescents with cancer, limited research has examined their perceptions of prognosis as compared with their parents. We assessed adolescents' understanding of their prognosis relative to parents and oncologists. METHODS: Families of adolescents (aged 10-17) were recruited at two pediatric institutions following a new diagnosis or relapse. Seventy-four adolescents, 68 mothers, and 40 fathers participated at enrollment; 76 adolescents, 69 mothers, and 35 fathers participated one year later. The adolescent's primary oncologist reported on prognosis only at enrollment. Participants rated the likelihood of the adolescent's survival in five years, as well as reporting prognosis communication and sources of information. RESULTS: Most oncologists (65%) and fathers (63%) discussed prognosis in numerical terms with the adolescent at baseline, which was greater than mother report (49%) of discussions of numerical prognosis with adolescents. Adolescents reported a better prognosis than oncologists, but comparable with mothers at diagnosis and one year. Adolescents' prognosis estimates were stable over time (P > .05). At diagnosis, adolescent-father (P = 0.025) and adolescent-oncologist (P < 0.001) discrepancies were larger for youth with advanced than non-advanced cancer. Adolescents whose parents received numerical prognosis estimates from the oncologist, and whose fathers reported providing numerical prognosis estimates had more accurate understandings of prognosis (P < 0.05). CONCLUSIONS: Adolescent prognosis estimates were comparable with those of parents at diagnosis and one year but more favorable than that of oncologists. Although additional research is needed, results suggest discrepancies in prognosis estimates between family members and oncologists, particularly for adolescents with advanced cancer.
Asunto(s)
Comunicación , Neoplasias/patología , Neoplasias/psicología , Oncólogos/psicología , Padres/psicología , Adolescente , Niño , Femenino , Estudios de Seguimiento , Humanos , Estudios Longitudinales , Masculino , Neoplasias/terapia , Pronóstico , Encuestas y CuestionariosRESUMEN
BACKGROUND/OBJECTIVES: Pediatric brain tumor survivors (PBTS) are at risk of experiencing challenges in social adjustment. However, the specific social behaviors of PBTS have rarely been directly assessed. This pilot study explores the first novel use of the Autism Diagnostic Observation Schedule, second edition (ADOS-2), to evaluate the social behaviors of PBTS. METHODS: Twenty-six PBTS (ages 9-17 years; M = 7.8 years from diagnosis; 52% male; 41% received radiation treatment) completed the ADOS-2. The proportion of the sample experiencing impairment was examined descriptively across all items of the ADOS-2, as well as by a summary "overall score" created for this study, and using the ADOS-2 "diagnostic algorithm" scores for autism. Social adjustment, cognitive, medical, and demographic variables were explored as correlates of the ADOS-2 "overall score". RESULTS: Study recruitment was 34%, impeded by distance from the tertiary-care center. The percentage of PBTS experiencing detectable impairments ranged from 0% to 50% across ADOS-2 items. Cranial radiation treatment, lower IQ, and slower cognitive processing were associated with higher impairment on the ADOS-2 "overall score". CONCLUSION: The ADOS-2 can be used to assess the discrete social behaviors of PBTS. This study provides a foundation for future investigations using the ADOS-2 to assess social behaviors in this population. Identifying specific social behavior difficulties in PBTS is key to refining much needed targeted social skills interventions for this population.
Asunto(s)
Neoplasias Encefálicas , Sobrevivientes , Adolescente , Niño , Femenino , Humanos , Masculino , Proyectos Piloto , Conducta Social , Habilidades SocialesRESUMEN
INTRODUCTION: Assessing health-related quality of life (HRQoL) is an increasingly important aspect of standard care in pediatric oncology. Currently, there is a gap in the availability of French questionnaires to assess the quality of life of French-speaking pediatric brain tumor (PBT) patients, which has important implications in the care of this population. The first aim of this study was to translate the original English Pediatric Quality of Life Inventory™ (PedsQL) brain tumor module version into French. The second aim was to describe the stability, repeatability and convergent validity of the French PedsQL brain tumor module. METHODS: A total of 61 PBT patients were included in this study. Among them, 15 children and 20 parents participated in the translation process. As part of the validation study, 48 children and 48 parents answered the PedsQL brain tumor module twice, and the PedsQL generic core scales and the patient-reported outcomes measurement information system (PROMIS-37 pediatric profile v2.0) questionnaire were administered once to the participants. The mean age of the 25 boys and 23 girls was 8.3 ± 4.8 years. For temporal stability, we used intraclass correlation coefficients (ICCs), for repeatability, we used the Bland and Altman method to assess the accuracy at a 1-week interval, and we used Pearson's correlation coefficients for convergent validity between the PedsQL brain tumor module, PedsQL general module and the PROMIS. RESULTS: Temporal stability for the parent proxy-reports (average ICC = 0.98) and the child self-reports (average ICC = 0.98) were excellent. There was a high absolute stability over a 1-week interval for the parent proxy-reports (ICC > 0.96) and child self-reports (ICC > 0.96). Convergent validity between parent proxy-reports and child self-reports was supported by positive correlations for five subscales. Children reported higher scores in cognitive problems and the movement and balance parameters than their parents and reported lower scores on the worry parameter than their parents. CONCLUSION: The strong psychometric properties of the French version of the PedsQL brain tumor module indicate that it is a validate and reliable questionnaire to measure HRQoL in PBT patients. The availability of a French version of the PedsQL brain tumor module supports the wider dissemination of the assessment of HRQOL in PBT patients.
Asunto(s)
Neoplasias Encefálicas , Calidad de Vida , Niño , Femenino , Humanos , Recién Nacido , Masculino , Padres , Psicometría , Calidad de Vida/psicología , Reproducibilidad de los Resultados , Encuestas y CuestionariosRESUMEN
BACKGROUND: Psychosocial screening has been proposed as a core standard of care in pediatric oncology. However, there has been limited application of this standard thus far. Understanding healthcare provider (HCP) attitudes towards psychosocial screening is an important element towards furthering implementation initiatives of standard screening practices in pediatric oncology. OBJECTIVE: To compare HCP perceptions of the utility of a psychosocial risk summary by discipline (oncologist, nurse, social worker), risk level (Universal, Targeted, Clinical) derived from the Psychosocial Assessment Tool (PAT), and time (shortly after a child's diagnosis [T1] and 6 months later [T2]). METHOD: All participating HCPs (oncologists, nurses, social workers) were asked to rate how useful they found the psychosocial risk summary using a visual analogue scale (VAS). RESULTS: The psychosocial risk summary was perceived as equally useful across providers (oncologists, nurses, social workers) and PAT risk levels at T1. At T2, the psychosocial risk summary was perceived as more useful by oncologists and nurses than social workers, and summaries indicating elevated risk were perceived as more useful than those indicating low risk. Overall, healthcare providers reported greater utility of psychosocial risk summary near diagnosis compared with 6 months later, largely driven by lower utility ratings reported by social workers at T2. CONCLUSION: Understanding perceived utility and factors affecting perceived utility is a key component to designing effective implementation strategies for systematic psychosocial screening. Active engagement of HCPs in the screening process is critical in improving implementation of psychosocial screening throughout pediatric cancer treatment.
Asunto(s)
Familia/psicología , Tamizaje Masivo/métodos , Neoplasias/psicología , Distrés Psicológico , Psicometría/métodos , Adulto , Anciano , Actitud del Personal de Salud , Niño , Femenino , Personal de Salud , Humanos , Masculino , Oncología Médica , Persona de Mediana Edad , Oncólogos , Psicología , Investigación , Trabajadores SocialesRESUMEN
OBJECTIVE: We evaluated whether conducting psychosocial screening using a validated measure (the Psychosocial Assessment Tool, PAT) and providing a summary of PAT results to the patient's treating team improves quality of life (QOL) in newly diagnosed patients with cancer, their caregivers and siblings, in general, and in relation to the initial family psychosocial risk. METHODS: Families were randomly allocated to an intervention (IG, treating team received PAT summary describing low, medium, or high psychosocial risk) or control group (CG, no summary provided to treating team) in two Canadian pediatric cancer centers. Caregivers (N = 122) of children newly diagnosed with cancer, patients (n = 36), and siblings (n = 25) completed QOL assessments at 2-4 weeks (T1) and 6 months post-diagnosis (T2). Caregivers also completed PAT and proxy QOL for patient and sibling. RESULTS: In general, patient-proxy total QOL improved in IG compared to CG over time but only for high psychosocial risk patients (p < .05). Patient proxy cancer-related QOL improved over time regardless of group allocation; caregiver QOL also improved over time (ps < .05). CONCLUSION: This study demonstrated the benefits of psychosocial screening results only on proxy patient QOL outcomes with high psychosocial risk near diagnosis. Evaluating QOL benefits in pediatric oncology patients is critical for establishing the clinical value of psychosocial screening. CLINICAL TRIAL REGISTRATION NUMBER: NCT02788604 (REGISTERED WITH HTTPS://CLINICALTRIALS.GOV/CT2/SHOW/NCT02788604 ).
Asunto(s)
Cuidadores/psicología , Neoplasias/psicología , Hermanos/psicología , Adolescente , Niño , Familia/psicología , Femenino , Humanos , Lactante , Masculino , Psicometría/métodos , Calidad de Vida/psicología , Estrés Psicológico/diagnóstico , Estrés Psicológico/etiología , Estrés Psicológico/psicologíaRESUMEN
OBJECTIVE: Children diagnosed with cancer experience stress associated with their diagnosis and treatment and are at heightened risk for problems in social adjustment. This study investigated the association between coping with cancer-related stress and problems in social adjustment across the first year after a pediatric cancer diagnosis. METHODS: Mothers of children (ages 5-17 years) with cancer (N = 312) were recruited from two children's hospitals. Mother's reported on their child's social adjustment and coping near diagnosis (T1) and 12 months (T2). RESULTS: Primary, secondary control, and disengagement coping were significantly associated with concurrent social adjustment at 12 months. The bivariate associations between baseline primary and secondary control coping and social problems 12 months later were no longer significant in a multivariate regression model. CONCLUSIONS: These findings inform our understanding of the association between coping with cancer-related stress and social adjustment of children diagnosed with cancer. Interventions teaching primary and secondary control coping strategies for cancer-related stressors may offer some benefit to concurrent youth social adjustment. Further research is needed on how best to support social adjustment in this population over time.
Asunto(s)
Neoplasias , Ajuste Social , Adaptación Psicológica , Adolescente , Niño , Preescolar , Femenino , Humanos , Madres , Apoyo Social , Estrés PsicológicoRESUMEN
BACKGROUND: Pediatric brain tumor survivors (PBTSs) are at risk of impairments in social competence. Limited information is available regarding nominations and reciprocated nominations of PBTSs as best friends and factors which may predict these. PROCEDURE: Caregivers of children (n = 32) aged 8-16 (38% low-grade glioma, 34% medulloblastoma, 28% other) completed ratings of child adjustment at baseline (T1) and PBTSs and classmates completed the Three Best Friends measure approximately 12 months later (T2). Sociometric data yielded ratings of best friend nominations and reciprocated best friend nominations. RESULTS: Nominations of PBTSs as best friends were not significantly different than controls, but PBTSs had fewer reciprocated best friend nominations than controls. Approximately half of PBTSs in this study did not have any reciprocated best friend nominations and 25% were not nominated by any peer as a best friend. Greater symptoms of depression and lower social skills in PBTSs were associated with fewer nominations as a best friend by peers and a greater likelihood of no reciprocal best friend nominations. Greater difficulties in emotional control were associated with fewer nominations as a best friend by peers. CONCLUSIONS: The discrepancy between reciprocated best friend nominations and best friend nominations highlights a need to attend to reciprocal friendships in PBTSs and further understand social information processes in this population. Longitudinal analyses illustrate the impact of emotional adjustment on PBTS friendships.
Asunto(s)
Neoplasias Encefálicas/psicología , Supervivientes de Cáncer/psicología , Amigos/psicología , Neoplasias Encefálicas/mortalidad , Niño , Femenino , Humanos , MasculinoRESUMEN
OBJECTIVE: Pediatric brain tumor survivors (PBTSs) are at risk for impairments in social adjustment and psychological distress. This study investigated longitudinal associations between symptoms of social withdrawal and anxiety/depression in PBTS, as well as medical, demographic, and personal characteristics that may also influence reports of social withdrawal and anxiety/depression. METHOD: About 91 PBTS (51% male, mean age 11.21 years, off-treatment) participated. At baseline and 8 months follow-up, primary caregivers of PBTS completed measures of social withdrawal, anxiety, and depression symptoms. Medical information (e.g. tumor type and location, cranial irradiation therapy) and child personal characteristics (e.g. child's age and gender, executive function, social skills) were obtained at baseline. RESULTS: Baseline reports of depression symptoms and social skills predicted social withdrawal 8 months later. Social withdrawal at baseline predicted greater combined anxiety and depression symptoms 8 months later. Depression alone predicted greater anxiety symptoms at follow-up. Anxiety symptoms and poor global executive functioning predicted greater depression symptoms at follow-up. CONCLUSIONS: The social adjustment and psychological distress of PBTSs are interrelated and can influence each other across time. These findings support the importance of multifaceted interventions targeting both psychological distress and social adjustment, in order to support the optimal psychosocial adjustment of PBTSs.
Asunto(s)
Ansiedad/psicología , Neoplasias Encefálicas/psicología , Supervivientes de Cáncer/psicología , Depresión/psicología , Aislamiento Social/psicología , Adolescente , Neoplasias Encefálicas/terapia , Supervivientes de Cáncer/estadística & datos numéricos , Niño , Femenino , Estudios de Seguimiento , Humanos , MasculinoRESUMEN
BACKGROUND: Although systematic psychosocial screening has been established as a standard of psychosocial care in pediatric oncology, this is not yet widely implemented in clinical practice. Limited information is available regarding the reasons behind this. In this study, we investigated perceptions of psychosocial screening by health care providers (HCPs) involved in pediatric cancer care. METHODS: Using purposeful sampling, 26 HCPs (11 oncologists, 8 nurses, and 7 social workers) from a large North American pediatric cancer center participated in semistructured interviews. Interviews were recorded and transcribed verbatim. Themes were then derived using content analysis. RESULTS: The themes were organized into perceived benefits of and barriers to psychosocial risk screening, and practical issues regarding implementation. Perceived benefits of screening included obtaining concise documentation of family psychosocial risk, identifying psychosocial factors important to medical treatment, starting a conversation, and triaging patients to psychosocial services. Barriers included perceived limited institutional support, commitment, and resources for psychosocial services, limited knowledge and appreciation of existing evidence-based validated tools, concerns about diverse family cultural backgrounds regarding psychosocial issues and language proficiency, and HCPs' personal values regarding psychosocial screening. Finally, practical issues of implementation including training in psychosocial risk screening, when and how to screen were discussed. CONCLUSIONS: These findings highlight the importance of addressing HCPs' perceptions of benefits, barriers, and practical issues regarding implementing psychosocial risk screening.