Captains on call: A qualitative investigation of an intervention to support children with retinoblastoma undergoing regular eye examinations.

BACKGROUND: Retinoblastoma is a rare childhood ophthalmic cancer that requires frequent eye examinations under anaesthesia and painful or distressing procedures. This can cause significant anxiety for children and their families. OBJECTIVE: We evaluated a Starlight Children's Foundation programme, 'Captains on Call', at the Queensland Children's Hospital, which aims to provide positive distraction and reduce stress, anxiety and pain during the perioperative journey for children in the retinoblastoma treatment pathway. This study examined the impact of the programme on the perioperative experience of the children and their families, using a qualitative design. METHODS: This study was conducted in a paediatric operating suite at a tertiary-level children's hospital in Australia. We interviewed a parent from 20 families (from a cohort of 40 families, including 44 children), whose children received treatment or screening for retinoblastoma, focusing on the programme's impact on the child and family at various stages during the perioperative journey. We undertook a thematic analysis of transcribed interviews. RESULTS: We identified two themes, each with two sub-themes: (1) the programme positively contributed to the overall treatment journey, by addressing different needs at different times, and helping to reframe a traumatic medical experience, and (2), the programme supported the whole family unit by empowering children through play, and adopting a family systems approach which recognised the impact of cancer treatment on the whole family. CONCLUSION: This study highlights the value of the Captains on Call programme in supporting children with retinoblastoma and their families during perioperative visits. The Captains, particularly as non-medicalised professionals in a healthcare setting, built trust and rapport with the children through play over repeated episodes of care. The interprofessional collaborative approach with a reflective cycle of practice extended it beyond a programme providing simple distraction. Other retinoblastoma services may benefit from implementing a similar approach.

Digital health interventions for postoperative recovery in children: a systematic review.

BACKGROUND: Digital health interventions offer a promising approach for monitoring during postoperative recovery. However, the effectiveness of these interventions remains poorly understood, particularly in children. The objective of this study was to assess the efficacy of digital health interventions for postoperative recovery in children. METHODS: A systematic review was conducted following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines, with the use of automation tools for searching and screening. We searched five electronic databases for randomised controlled trials or non-randomised studies of interventions that utilised digital health interventions to monitor postoperative recovery in children. The study quality was assessed using Cochrane Collaboration's Risk of Bias tools. The systematic review protocol was prospectively registered with PROSPERO (CRD42022351492). RESULTS: The review included 16 studies involving 2728 participants from six countries. Tonsillectomy was the most common surgery and smartphone apps (WeChat) were the most commonly used digital health interventions. Digital health interventions resulted in significant improvements in parental knowledge about the child's condition and satisfaction regarding perioperative instructions (standard mean difference=2.16, 95% confidence interval 1.45-2.87; z=5.98, P<0.001; I2=88%). However, there was no significant effect on children's pain intensity (standard mean difference=0.09, 95% confidence interval -0.95 to 1.12; z=0.16, P=0.87; I2=98%). CONCLUSIONS: Digital health interventions hold promise for improving parental postoperative knowledge and satisfaction. However, more research is needed for child-centric interventions with validated outcome measures. Future work should focus development and testing of user-friendly digital apps and wearables to ease the healthcare burden and improve outcomes for children. SYSTEMATIC REVIEW PROTOCOL: PROSPERO (CRD42022351492).

An mHealth application for chronic vascular access: A multi-method evaluation.

BACKGROUND: Healthcare consumers require diverse resources to assist their navigation of complex healthcare interactions, however, these resources need to be fit for purpose. AIM: In this study, we evaluated the utility, usability and feasibility of children, families and adults requiring long-term intravenous therapy using a recently developed mobile health application (App), intravenous (IV) Passport. DESIGN: Multi-site, parallel, multi-method, prospective cohort study. METHODS: A multi-site, multi-method study was carried out in 2020-2021, with 46 participants (20 adults, 26 children/family) reporting on their experiences surrounding the use of the IV Passport for up to 6 months. RESULTS: Overall, utility rates were acceptable, with 78.3% (N = 36) using the IV Passport over the follow-up period, with high rates of planned future use for those still active in the project (N = 21; 73%), especially in the child/family cohort (N = 13; 100%). Acceptability rates were high (9/10; IQR 6.5-10), with the IV Passport primarily used for documenting new devices and complications. Thematic analysis revealed three main themes (and multiple subthemes) in the qualitative data: Advocacy for healthcare needs, Complexity of healthcare and App design and functionality. CONCLUSION: Several recommendations were made to improve the end-user experience including 'how to' instructions; and scheduling functionality for routine care. IMPLICATIONS FOR THE PROFESSION AND/OR PATIENT CARE: The IV Passport can be safely and appropriately integrated into healthcare, to support consumers. IMPACT: Patient-/parent-reported feedback suggests the Intravenous Passport is a useful tool for record-keeping, and positive communication between patients/parents, and clinicians. REPORTING METHOD: Not applicable. PATIENT CONTRIBUTION: Consumers reported their experiences surrounding the use of the IV Passport for up to 6 months.

Specialist early parenting intervention: Effectiveness of a novel nurse-led approach for rural families.

BACKGROUND: Rural Australian families report lower access to specialist early parenting services than urban families. To address the early parenting needs of rural families with children aged 0-3, a novel specialist-nursing early parenting service, Tresillian To You, was implemented for five rural communities in New South Wales, Australia. This study aimed to investigate the initial impact and reach of the service. METHODS: Convenience sampling was used to recruit 36 parents who attended the service. Of these, 34 completed structured pre-and-post intervention phone interviews. Additional data were collected from the parent and child health record. Data were imported into SPSS for descriptive and inferential data analysis. FINDINGS: All parent participants were mothers, with a mean age of 31.5 (SD 4.582). Sleep and settling was the primary reason for referral (78%, n = 28). Following service engagement, statistically significant improvements were seen in parent adjustment (95% CI = -1.71, -0.52, p < .001), parent comprehensibility (95% CI = -1.81, -0.42, p = .003), and parent perception of child sleep (95% CI = 16.3, 34.9, p < .001). Families from non-target communities (n = 15) reported a higher level of need at baseline, compared with families from target rural communities (n = 21). Following service engagement, a similar level of benefit was reported between both groups. DISCUSSION: Preliminary evidence suggests that this new service may be an effective method of providing specialist early parenting intervention for families in rural communities. PRACTICE IMPLICATIONS: The provision of effective nurse-led specialist early child and family interventions may help to alleviate early parenting difficulty for rural families, leading to improvements in child and family outcomes.

The management of pain during pediatric hematopoietic stem cell transplantation: A qualitative study of contextual factors that influenced pain management practices.

BACKGROUND: Children hospitalized following hematopoietic stem cell transplantation (HSCT) experience complex and prolonged pain in response to the intensity of this treatment. OBJECTIVES: To describe how pain was managed for children during HSCT therapy and how contextual factors related to the clinical environment influenced healthcare providers' and parents' pain management practices. METHODS: A qualitative case study was conducted and involved semi-structured interviews at two time points following transplantation (30 and 90 days) with parents (n = 10) and naturalistic observations of pain-related care provided to children (n = 29) during HSCT therapy by their healthcare providers (n = 10). Semi-structured interviews were also conducted with healthcare providers (n = 14). RESULTS: The effectiveness of pain management interventions was hindered by the multifactorial nature of pain children experienced, a gap in the provision of psychosocial interventions for pain and a lack of evidence-based guidelines for the sustained, and often long-term, administration of opioids and adjuvant medications. Misconceptions were demonstrated by healthcare providers about escalating pain management according to pain severity and differentiating between opioid tolerance and addiction. Parents were active in the management of pain for children, especially the provision of nonpharmacological interventions. Collaboration with external pain services and the impact of caring for children in protective isolation delayed timely management of pain. CONCLUSIONS: There is a pressing need to create evidence-based supportive care guidelines for managing pain post transplantation to optimize children's relief from pain. If parents and children are to be involved in managing pain, greater efforts must be directed toward building their capacity to make informed decisions.

Perceived barriers and facilitators to preventing hospital-acquired pressure injury in paediatrics: A qualitative analysis.

AIM: This qualitative study aimed to identify nurses' and allied health professionals' perceptions and experiences of providing hospital-acquired pressure injury (HAPI) prevention in a paediatric tertiary hospital in Australia, as well as understand the perceived barriers and facilitators to preventing HAPI. DESIGN: A qualitative, exploratory study of hospital professionals was undertaken using semi-structured interviews between February 2022 and January 2023. METHODS: Two frameworks, the Capability, Opportunity and Motivation Model of Behaviour (COM-B) and the Theoretical Domains Framework (TDF), were used to give both theoretical and pragmatic guidance. Participants included 19 nursing and allied health professionals and data analysis was informed by the framework approach. RESULTS: Analysis revealed nine core themes regarding professionals' beliefs about the barriers and facilitators to HAPI prevention practices across seven TDF domains. Themes included HAPI prevention skills and education, family-centred care, automated feedback and prompts, allocation and access to equipment, everybody's responsibility, prioritizing patients and clinical demands, organizational expectations and support, integrating theory and reality in practice and emotional influence. CONCLUSION: These findings provide valuable insights into the barriers and facilitators that impact paediatric HAPI prevention and can help identify and implement strategies to enhance evidence-based prevention care and prevent HAPI in paediatric settings. IMPACT: Overcoming barriers through evidence-based interventions is essential to reduce HAPI cases, improve patient outcomes, and cut healthcare costs. The findings have practical implications, informing policy and practice for improved preventive measures, education, and staffing in paediatric care, ultimately benefiting patient well-being and reducing HAPIs. PATIENT OR PUBLIC CONTRIBUTION: No patient or public contribution. The focus of the study is on healthcare professionals and their perspectives and experiences in preventing HAPIs in paediatric patients. Therefore, the involvement of patients or the public was not deemed necessary for achieving the specific research objectives.

The influence of contextual factors on children's communication of pain during pediatric Haematopoietic Stem Cell Transplantation: A qualitative case study.

PURPOSE: The aim of this study was to describe how contextual factors related to the clinical setting of a pediatric HSCT unit influenced children's communication of pain to their health-care providers and parents during hospitalization. DESIGN AND METHODS: A qualitative case study design was conducted in two-phases in a tertiary level pediatric HSCT unit. The Social Communication Model of Pain provided the conceptual framework for the study. In phase one participants were parents and phase two participants were health-care providers and children in a pediatric HSCT unit. Parents participated in semi-structured interviews at 30- and 90-days post-transplantation regarding their child's communication of pain. Naturalistic observations of children receiving clinical care were conducted and health-care providers participated in semi-structured interviews. RESULTS: Children extensively denied pain to their parents and health-care providers. When children did communicate pain, they were motivated by a need to seek interventions for their pain. Children's willingness to communicate pain was influenced by the physiological impact of HSCT therapy, their previous experiences of pain, their relationship with parents and health-care providers and parents and an environment of fear and uncertainty. CONCLUSIONS: There is a pressing need for child-centric approaches to support children to communicate their pain experiences to overcome the limitations imposed by the complexity of their medical treatment and the clinical environment in which they receive healthcare. PRACTICE IMPLICATIONS: In the context of HSCT therapy children may not communicate pain until pain is severe, and no longer bearable, or outright deny the presence of pain.

Experiences of Pain in Hospitalized Children During Hematopoietic Stem Cell Transplantation Therapy.

Children undergoing hematopoietic stem cell transplantation (HSCT) are vulnerable to pain due to the intensity and toxicity of this treatment. An instrumental case study design of two qualitative phases was conducted to examine the pain experiences of hospitalized children during HSCT therapy and how contextual factors related to the pediatric HSCT environment influenced their experience of pain. The Social Communication Model of Pain provided the conceptual framework for the study. In Phase 1, semi-structured interviews were conducted with parents of a child undergoing HSCT therapy at two time points. Phase 2 was conducted as a naturalistic observational study of the clinical care provided to children and semi-structured interviews with health-care providers. Children experienced complex and multifaceted pain with physical, psychological, and contextual contributors. Understanding the many factors contributing to the child's pain experience can inform strategies to improve the management of pain during HSCT therapy.

Virtual Reality for Pediatric Needle Procedural Pain: Two Randomized Clinical Trials.

OBJECTIVE: To assess the efficacy and safety of a virtual reality distraction for needle pain in 2 common hospital settings: the emergency department (ED) and outpatient pathology (ie, outpatient laboratory). The control was standard of care (SOC) practice. STUDY DESIGN: In 2 clinical trials, we randomized children aged 4-11 years undergoing venous needle procedures to virtual reality or SOC at 2 tertiary Australian hospitals. In the first study, we enrolled children in the ED requiring intravenous cannulation or venipuncture. In the second, we enrolled children in outpatient pathology requiring venipuncture. In the ED, 64 children were assigned to virtual reality and 59 to SOC. In pathology, 63 children were assigned to virtual reality and 68 to SOC; 2 children withdrew assent in the SOC arm, leaving 66. The primary endpoint was change from baseline pain between virtual reality and SOC on child-rated Faces Pain Scale-Revised. RESULTS: In the ED, there was no change in pain from baseline with SOC, whereas virtual reality produced a significant reduction in pain (between-group difference, -1.78; 95% CI, -3.24 to -0.317; P = .018). In pathology, both groups experienced an increase in pain from baseline, but this was significantly less in the virtual reality group (between-group difference, -1.39; 95% CI, -2.68 to -0.11; P = .034). Across both studies, 10 participants experienced minor adverse events, equally distributed between virtual reality/SOC; none required pharmacotherapy. CONCLUSIONS: In children aged 4-11 years of age undergoing intravenous cannulation or venipuncture, virtual reality was efficacious in decreasing pain and was safe. TRIAL REGISTRATION: Australia and New Zealand Clinical Trial Registry: ACTRN12617000285358p.

Pain assessment and management in paediatric oncology: a cross-sectional audit.

AIMS AND OBJECTIVES: To describe the pain assessment and management practices documented by health professionals within a tertiary-level Children's Cancer Centre and to evaluate how these practices were compared with international recommendations. BACKGROUND: Children with cancer are vulnerable to pain due to the intensity of antineoplastic therapy. Therefore, it is imperative to ensure that current pain management practices provided to paediatric oncology inpatients are of a high quality. DESIGN: A single-site cross-sectional audit. METHODS: A 24-hour period of documented pain-related care in randomly selected inpatients of an Australian tertiary-level Children's Cancer Centre was examined. The current pain management practices were audited over a two-month period resulting in 258 episodes of pain-related care being reviewed. RESULTS: Pain related to medical treatment for cancer was common (n = 146/258, 57%) and persistent. The presence of pain was not consistently recorded by health professionals (n = 75/146, 51%). Pain was mild (n = 26/75, 35%) and opioids were the mainstay of pain management interventions (n = 63/112, 56%). Adjuvants were an important component of pain management (n = 47/112, 42%), and nonpharmacological methods of managing pain were under-represented in this audit (n = 38/146, 26%). According to the Pain Management Index, pain was appropriately managed for the majority of children (n = 65/76, 87%). CONCLUSIONS: Pain management practices did not fully reflect the recommendations of contemporary paediatric pain management. Due to limitations in the documentation of children's pain, it was difficult to determine the effectiveness of pain management interventions. RELEVANCE TO CLINICAL PRACTICE: This study highlights the ongoing problem of pain for children receiving antineoplastic therapy. It is recommended that health professionals routinely screen for the presence of pain during hospitalisation and assess the efficacy of pain-related care.

"Their Bodies Just Give It Away": A Qualitative Study of Pain Assessment in the Context of Pediatric Hematopoietic Stem Cell Transplantation Therapy.

BACKGROUND: Children undergoing hematopoietic stem cell transplantation (HSCT) are vulnerable to pain. OBJECTIVE: This study aimed to examine how healthcare providers and parents assessed pain and what contextual factors influenced their pain assessment practices for children hospitalized after allogeneic HSCT therapy. METHODS: A qualitative case study was conducted in a tertiary level pediatric HSCT unit in 2 phases. Semistructured interviews with parents were conducted at 30 and 90 days after HSCT therapy. Healthcare providers participated in naturalistic observations of pain-related care provided to children during their hospitalization for HSCT therapy and a semistructured interview. RESULTS: The assessment of pain after transplantation by healthcare providers and parents was predominantly reliant on the observation of children for behaviors indicative of pain, rather than the application of validated pain assessment tools. Without formal measures of the pain experience, judgments regarding the severity of children's pain were influenced by the context of high acuity of care posttransplantation and the emotional responses of healthcare providers and parents from bearing witness to children's pain. CONCLUSION: Pain assessments mostly reflected children's ability to tolerate pain, rather than a genuine measurement of how significantly pain impacted the child. IMPLICATION FOR PRACTICE: This study has emphasized how the assessment of pain for children hospitalized during HSCT therapy is limited by the complexity of the clinical environment. It is recommended that validated methods of assessing pain by healthcare providers and parents be implemented into clinical practice to ensure children's pain is visible.

Comfort First: an evaluation of a procedural pain management programme for children with cancer.

BACKGROUND: The Comfort First Program (CFP) provides children and their caregivers with early procedural pain management intervention to reduce procedural pain and distress. This study evaluated whether the CFP was meeting its goals and effectively implementing the Royal Australasian College of Physicians paediatric pain management guidelines. METHODS: The study was conducted as a single-site cross-sectional audit. One hundred and thirty-five patients (mean age 7.7 years) receiving treatment at the Royal Children's Hospital, Melbourne, Children's Cancer Centre Day Oncology Unit were observed. Procedural aspects related to the treatment room, carer and staff behaviour, child distress and use of pharmacologic and nonpharmacologic interventions were recorded using an audit tool developed for the study. RESULTS: The procedure room was regularly quiet and prepared before the child entered. Median procedure duration was 8 min. Median procedure wait time was 54 min. At least one carer was typically present during procedures. Comfort First (CF) clinicians were more likely to be present in procedures with a significantly distressed child. Carers, nurses and CF clinicians generally displayed comfort-promoting behaviour. Topical anaesthetic was regularly utilised. Nonpharmacologic supports were frequently used, particularly distraction. Patients under 8 years of age were significantly more likely to receive nonpharmacologic supports and have a carer and CF clinician present. Age was a significant predictor of distress, with higher distress rates in younger children. CONCLUSIONS: The CFP was found to be effectively implementing procedural pain guidelines. Regular audit is recommended to ensure adherence to pain management standards.

Parenting interventions targeting early parenting difficulty: A scoping review.

Parent and child wellbeing are reciprocal. Attentive, responsive parenting, is contingent on parental wellbeing. Insights into mechanisms of early parenting interventions that seek to improve parent and child outcomes are needed. This scoping review aimed to systematically map research reporting on parenting interventions for parents experiencing early parenting difficulty. A secondary aim was to synthesise existing research using a realist lens, to provide context, mechanism and outcome insights into elements of early parenting interventions. A systematic search was conducted across six databases within the publication period of 2010-2020, to identify evidence on interventions targeting early parenting difficulty. Using pre-determined inclusion criteria, fifteen studies were selected for review. Deductive reflexive thematic analysis identified three themes: conceptual disparities in early parenting difficulty, early parenting intervention diversity and an absence of theory to explain interventions or outcomes. Neither early parenting difficulty nor the theoretical basis for early parenting interventions were well defined. Identification of contexts, mechanisms and outcomes of early parenting interventions is a unique contribution of this study. These insights may be used to inform planning, implementation and evaluation activities to promote context-focused, early parenting interventions targeting a critical phase of child development.