The impact of caregiver anxiety/depression symptoms and family functioning on child quality of life during pediatric cancer treatment: From diagnosis to 6 months.

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.

A qualitative examination of the benefits and challenges of a psychosocial screening intervention in pediatric oncology: "Support comes to us".

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.

Pilot randomized psychosocial trial of a screening intervention in pediatric oncology.

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.

Protocol for mapping psychosocial screening to resources in pediatric oncology: a pilot randomized controlled trial.

BACKGROUND: A pediatric cancer diagnosis and its treatment can have a detrimental effect on the mental health of children and their families. Screening to identify psychosocial risk in families has been recognized as a standard of care in pediatric oncology, but there has been limited clinical application of this standard thus far. A significant impediment to the implementation of psychosocial screening is the dearth of information on how to translate psychosocial screening to clinical practice, and specifically, how to follow-up from screening results. This manuscript aims to describe a protocol of a new intervention examining the feasibility and acceptability of mapping via a Psychosocial Navigator (PSN) psychosocial screening results to specific recommendations of resources for families based on measured risk for psychosocial distress and mental health symptoms. METHODS: The pilot randomized control trial (RCT) consists of dyads of youth (10-17 years) newly diagnosed with cancer and their primary caregiver. This RCT includes two arms (intervention and control group), with each group completing measurements near diagnosis and 1 year later. After the initial assessment, dyads in the intervention group receive monthly screening results and recommendations from the study PSN that are tailored to these results. The patient's primary healthcare team (nurse, social worker, oncologist) also receive the risk, distress, and mental health results as well as the recommendations from the PSN. DISCUSSION: This study addresses a significant barrier to the implementation of psychosocial screening in pediatric oncology: specifically, the limited knowledge of how to follow-up from screening results. Findings from this pilot will inform a future definitive RCT to test the effectiveness of the intervention on patient and family mental health outcomes. This project has implications for enhancing clinical care in pediatric oncology, as well as other pediatric populations. STRENGTHS AND LIMITATIONS OF THIS STUDY: This is the first study of screening and follow-up using a psychosocial navigator. This study involves both patient and caregiver report. The small sample size necessitates a future larger study to investigate the effects of intervention. TRIAL REGISTRATION: NCT04132856 , Registered 10 October 2019-retrospectively registered.

The cancer journey through the lens of a sibling: a photovoice intervention for teen siblings of children with cancer.

Photovoice was employed as a clinical intervention to engage siblings of children with cancer, provide opportunity for sibling support, and elicit information about their lived experiences. Sibling support groups have been effective, however, none have utilized this intervention. Four teenagers who had a sibling diagnosed with cancer participated in a seven-week intervention group. Themes were identified to inform future clinical practice. Four main themes included: (i) support, (ii) changes, (iii) feelings, and (iv) Photovoice group experience. Photovoice, used as a clinical intervention, elicited valuable information and generated fruitful conversations, enabling siblings to relate to and learn from one another.

Psychosocial screening and mental health in pediatric cancer: A randomized controlled trial.

OBJECTIVE: Diagnosis and treatment of childhood cancer can impact the mental health of the family. Early psychosocial risk screening may help guide interventions. The primary aim of this study was to evaluate if an intervention (providing psychosocial risk information to the patient's treating team) would result in decreased depression symptoms in caregivers, in general, and relative to initial psychosocial risk. A secondary aim was to examine intervention effects in a small sample of patient and sibling self-reported outcomes. METHODS: We randomly allocated families to the intervention group (IG, treating team received PAT summary) or control group (CG, no summary). One hundred and twenty-two caregivers of children newly diagnosed with cancer completed measures of depression and anxiety and psychosocial risk 2-4 weeks from diagnosis (T1) and 6 months later (T2). Patients and siblings completed self-report measures of depression and anxiety. RESULTS: There was no significant difference in caregiver depression symptoms between the IG and CG at T2. However, in the context of psychosocial risk, caregivers in the IG showed improvement in depression scores compared to CG when risk was high near diagnosis (Ms = 6.68 vs. 9.76, respectively, d = .60). Similar results were found in anxiety scores. Intervention effects with patients and siblings were inconclusive. CONCLUSIONS: Sharing psychosocial risk information with the treating team had measurable impact on mental health outcomes only if caregivers had initial high psychosocial risk. This study contributes to our understanding of mapping psychosocial screening and resources to improve outcomes in families managing childhood cancer. (PsycInfo Database Record (c) 2020 APA, all rights reserved).

Healthcare provider utility ratings of a psychosocial screening summary: from diagnosis to 6 months.

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.

Quality of life in pediatric oncology patients, caregivers and siblings after psychosocial screening: a randomized controlled trial.

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 ).

Through our eyes: A photovoice intervention for adolescents on active cancer treatment.

RESEARCH APPROACH: Photovoice, a participatory action research methodology, is a novel and promising intervention for adolescents with cancer. Photovoice was used as an intervention for eliciting and addressing the psychosocial needs of adolescents on active cancer treatment. PARTICIPANTS: Six adolescents, aged thirteen to seventeen years old, who were on active treatment or had completed treatment in the three months prior to recruitment participated in a seven-week photovoice group that took place from March to May 2017. Methodological Approach: Each of the seven sessions was recorded and later transcribed. A content analysis was used to identify themes that were analyzed using an integrated framework developed earlier. The framework broadly categorized the themes into six domains: (i) physical changes, (ii) psychosocial impacts, (iii) short-term social impacts, (iv) long-term social impacts, (v) impacts on holistic well-being, and (vi) informational needs. INTERPRETATION: Photovoice is an effective intervention for eliciting and addressing the psychosocial needs of adolescents on active cancer treatment.

Perceived benefits of and barriers to psychosocial risk screening in pediatric oncology by health care providers.

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.

Exploring Adolescents' Cancer Journey Through Photovoice: A Narrative Synthesis.

PURPOSE: Photovoice is a novel and promising intervention for working with youth in healthcare settings. Despite this, few studies have examined the efficacy of photovoice as a clinical tool for working with teenagers who are on their cancer journey. To better understand the needs of teenagers with cancer and the ways that photovoice can be utilized to address these needs, a systematic review of the literature was undertaken. METHODS: Keyword searches of six databases were completed, including MEDLINE, EMBASE, PsycINFO, Social Work Abstracts, Sociological Abstracts, and Health and Psychosocial Instruments. Searches were limited to articles focusing on the psychosocial needs of adolescents, aged 13-17, who were on active cancer treatment. RESULTS: Sixty-four articles were identified that discussed the psychosocial needs of teenagers on active cancer treatment. The needs of these teenagers can be understood as being influenced by the physical changes and symptoms, psychological impact of diagnosis and treatment, short- and long-term social impacts of cancer, impact on holistic well-being, and need for clear, age-appropriate communication. Among these articles, only four articles used photovoice as a methodology and none examined the impact of photovoice as an intervention for teenagers who were currently on active treatment. CONCLUSION: Photovoice is uniquely positioned among other psychosocial interventions to help address the needs of teenagers on their cancer journey. Despite this, few researchers have examined the efficacy of photovoice as a psychosocial intervention for teenagers who are currently on active treatment.

The Experiences of Parents of Pediatric Patients With Acute Lymphoblastic Leukemia, 2 Months After Completion of Treatment.

Diagnosis and treatment of childhood acute lymphoblastic leukemia (ALL) can be a highly stressful time for the entire family. While completion of treatment may bring relief to some families, it may also bring about additional anxieties and fear. The primary objective of this article is to present an analysis of the experiences, emotional states, and support needs of parents of pediatric cancer patients 2 months after treatment completion for ALL. Using a qualitative interpretive description approach, transcripts from interviews with 17 parents from the leukemia/lymphoma program of a large urban pediatric cancer center were analyzed using N-Vivo 10 data analysis software. Parents reported simultaneous feelings of relief and apprehension, changing relationships with their health care team and the experience of returning to a life following treatment. Results highlight the need for support for parents on completion of treatment.

Healthcare Professionals' Knowledge of Family Psychosocial Problems in Pediatric Cancer: A Pilot Study.

BACKGROUND: Best practice guidelines for the treatment of cancer now advocate for a child- and family-centered model of care and a psychosocial model of risk prevention. However, healthcare professionals (HCPs) report a number of barriers preventing the implementation of psychosocial care, including an absence of tools to help identify psychosocial problems within the family. OBJECTIVES: The aims of this study are to (1) explore the psychometric properties of the Psychosocial Care Checklist (PCCL) and (2) test if the PCCL can differentiate the degree to which HCPs are aware of psychosocial problems within the family (patient, siblings, parents) of a child with cancer. METHODS: Thirty-seven HCPs caring for a child with cancer completed the PCCL at time 1 (2-4 weeks after diagnosis) and 29 HCPs completed the PCCL at time 2 (2-3 weeks after). RESULTS: The PCCL had strong test-retest reliability for all domains (α > .60) and strong internal consistency for the total PCCL (α = .91). Interrater reliability was moderate for the oncologist-nurse dyad with regard to sibling knowledge (r = 0.56) and total psychosocial knowledge (r = 0.65). Social workers were significantly more knowledgeable than both nurses and oncologists about total family problems (P = .01) and sibling problems (P = .03). CONCLUSIONS: Preliminary findings suggest that the PCCL has adequate test-retest reliability and validity and is useful in differentiating the degree to which HCPs are aware of psychosocial problems within the family, with social workers being the most knowledgeable. IMPLICATIONS FOR PRACTICE: Using the PCCL may help HCPs to identify psychosocial problems within the family and appropriately allocate psychosocial resources.

Healthcare Providers' Perceptions of the Utility of Psychosocial Screening Tools in Childhood Cancer: A Pilot Study.

PURPOSE/OBJECTIVES: To examine the perceptions of healthcare providers (HCPs) regarding the utility of two psychosocial screening tools designed for pediatric oncology, the Psychosocial Assessment Tool-Revised (PATrev) and the Psychosocial Care Checklist (PCCL). DESIGN: Repeated measures comparative study. SETTING: Four pediatric health centers in Ontario, Canada. SAMPLE: 15 oncologists, 14 nurses, and 8 social workers. METHODS: Using a visual analog scale (VAS), participants were asked to rate how useful they found (a) the psychosocial summary derived from the parent-completed PATrev, used to assess family psychosocial risk, and (b) the HCP-completed PCCL, used to identify family psychosocial needs. Measures were completed soon after diagnosis and six months later. Mann-Whitney U tests were used for analyses. MAIN RESEARCH VARIABLE: VAS scores. FINDINGS: Pediatric oncology HCPs differ in their acceptance of the psychosocial screening tools tested. The highest utility ratings for both instruments were from nurses, and the lowest utility ratings were from social workers; moderate ratings were obtained from oncologists. CONCLUSIONS: Psychosocial screening tools can identify the psychosocial needs of children with cancer and their families throughout the cancer trajectory. Consequently, these tools could foster communication among colleagues (medical and nonmedical) who are caring for children with cancer about the psychosocial needs of this population and the allocation of resources to address those needs. IMPLICATIONS FOR NURSING: Nurses seem to value these tools more than other HCPs, which may have positive implications for their clinical practice.

Psychosocial issues of the adolescent cancer patient and the development of the Teenage Outreach Program (TOP).

For young people with cancer their process through adolescence is marked with disruption. The demands of treatment and resulting social isolation combined with issues of body image/self-esteem complicate this turbulent life cycle transition. The effects of'these disruptions require psychosocial staff to utilize creative approaches to treatment. The framework of the Teen Outreach Program (TOP) is to connect teens with leukemia/lymphoma to one another, and to reconnect them back with their peers by engaging them in "normal" events. The overwhelming response highlights the positive effect on teenagers' psychosocial health, thereby solidifying the importance of providing innovative therapeutic interventions for this under-serviced population. Further studies of the long-term impact of the program's success are warranted.

Wearing masks in a pediatric hospital: developing practical guidelines.

During the outbreak of Severe Acute Respiratory Syndrome (SARS) in the spring of 2003, strict infection control measures were implemented in Toronto and surrounding hospitals. These measures included extreme restrictions on those who would normally accompany patients to the hospital, screening for SARS, and protective attire for hospital staff, including masks, face shields, goggles, gloves and gowns. At Toronto's Hospital for Sick Children (HSC), patients could only be accompanied or visited by one person, often only in patients' rooms. For the first four weeks, patients and their designated parent had to wear masks in almost all areas of the hospital. Staff wore masks (and other appropriate protective clothing) whenever in contact with patients and in many patient care areas. Although these barriers were an important part of containing SARS, their use created significant challenges for patients and staff. This article focusses on the use of infection control masks in routine pediatric healthcare and the tools developed by HSC staff to reduce the negative psychosocial impact on children and families.