Goal-directed therapeutic exercise for paediatric posterior fossa brain tumour survivors: a qualitative analysis of experiences.

PURPOSE: To explore child and parent experiences of a 12-week goal-directed therapeutic exercise intervention in paediatric posterior fossa brain tumours survivors and to identify features of the program that influenced program adherence and acceptability. METHODS: Eleven interviews were conducted; five parent-child dyads (mothers = 83%) and one parent only (mean child age = 10.6 ± 3.0 years; 83% male). Posterior fossa brain tumour survivors, who participated in a weekly goal-directed exercise program for 12 weeks, completed semi-structured interviews to discuss their experience of the program. An inductive content analysis was undertaken. Interviews were transcribed, imported into NVivo and independently coded by two reviewers. Code and content categories were iteratively discussed and refined. RESULTS: Five content categories were generated: (1) perceived improvements, (2) program logistics, (3) activity selection, (4) connection with the therapist and (5) options for technology. All participants valued the tailored exercise program and described improvements in movement competence. Children and their parents discussed preferring home- and community-based locations and favoured face-to-face delivery. Occasionally, parents reported difficulty completing the home program due to low child motivation or family time restrictions. Multiple families suggested an interactive digital application would be an effective delivery channel for the supplemental home-based program. CONCLUSION: A goal-directed exercise program delivered at home and in community-based locations was considered valuable and helpful for improving movement competence in paediatric survivors of posterior fossa brain tumour. TRIAL REGISTRATION: ACTRN12619000841178 June 12, 2019.

Second Primary Cancers Following Cancer Among Adolescents and Young Adults in Queensland, Australia, 1982-2018.

Purpose: Increased risk of second primary cancers is an unwanted consequence of cancer survivorship. While the epidemiology of second cancers is well-documented for children and older people, less is known about second cancers among adolescent and young adult (AYA) cancer survivors. Methods: Unit record data were obtained from the Queensland Cancer Register. The study cohort comprised Queensland residents aged 15 to 39 years who were diagnosed with a first primary invasive cancer between 1982 and 2013. Follow-up on second cancers was available for a minimum of 5 years to the end of 2018. Standardized incidence ratios (SIRs) were used to approximate the risk of a second primary cancer relative to the general population. Results: In total, 3086 second primary cancers were observed among 34,431 eligible AYA patients (9%), equating to an overall SIR of 1.59 (95% confidence interval [CI] 1.53-1.64). Melanoma (n = 853, 28%) and female breast cancer (n = 594, 19%) were the most common types of second primary cancer in the study cohort. Relative risk of all second primary cancers combined among AYA patients was inversely associated with age and was highest within the period immediately after first diagnosis irrespective of age group; for example, patients aged 15-24 at first diagnosis recorded more than four times as many second primary cancers than expected within 2 years of their first cancer (SIR = 4.40, 95% CI 2.83-6.82). Conclusions: Detailed data on second primary cancers among AYA cancer survivors are important in promoting increased awareness and to inform the development of targeted prevention and surveillance strategies.

Therapeutic exercise interventions in pediatric survivors of brain cancer and other solid tumors: A scoping review.

Background: Improved survival rates for children with solid tumors presents an ongoing challenge of how to maximize quality of survivorship and effectively manage the short- and long-term complications of disease and treatment. To gain an understanding of the extent and nature of research pertaining to therapeutic exercise interventions and identify knowledge gaps, we conducted a scoping review of exercise training studies conducted in pediatric survivors of brain cancer and other solid tumors. Method: A systematic literature search was performed across four electronic databases. Papers were selected for full-text review if they included participants treated for brain cancer or other solid tumors, with at least 50% of participants aged ≤ 21 years, evaluated an exercise intervention ≥2-weeks in duration, and were published in an English, peer-reviewed journal. We included the following quantitative study designs; randomized controlled trials, non-randomized trials, and single-arm pre-test-post-test. Results: Of the 7,482 citations identified, 17 papers met the inclusion criteria (presenting findings from eleven studies). Two studies were randomized controlled trials, five studies were non-randomized controlled trials, and four studies were a single-arm pre-test post-test design. Average age of participants ranged from 7.3-15.5 years, and time since diagnosis ranged from 3 to 70 months. Five studies included participants with brain tumors exclusively, three studies included other solid tumors, and three studies included a mixed sample (brain and other solid tumors). A wide range of exercise modalities were employed, including cycle ergometry, resistance training, sport, yoga, and active gaming. The length of the exercise program ranged from 3-40 weeks and frequency from 3-11 sessions per week. Exercise session duration ranged from 15-180 min, with most studies reporting 30-90-min sessions. Adherence ranged from 77 to 100%, with none of the studies reporting adverse events. Studies reported improvements in cardiorespiratory fitness, functional strength, physical activity, and quality of life. Conclusions: A small number of mostly low methodological quality studies have examined the effects of therapeutic exercise in pediatric survivors of solid tumors. Although limited, the extant literature supports the feasibility and safety of therapeutic exercise interventions for pediatric survivors of brain cancer and other solid tumors.

Interventions for interpersonal communication about end of life care between health practitioners and affected people.

BACKGROUND: Communication about end of life (EoL) and EoL care is critically important for providing quality care as people approach death. Such communication is often complex and involves many people (patients, family members, carers, health professionals). How best to communicate with people in the period approaching death is not known, but is an important question for quality of care at EoL worldwide. This review fills a gap in the evidence on interpersonal communication (between people and health professionals) in the last year of life, focusing on interventions to improve interpersonal communication and patient, family member and carer outcomes. OBJECTIVES: To assess the effects of interventions designed to improve verbal interpersonal communication about EoL care between health practitioners and people affected by EoL. SEARCH METHODS: We searched CENTRAL, MEDLINE, Embase, PsycINFO, and CINAHL from inception to July 2018, without language or date restrictions. We contacted authors of included studies and experts and searched reference lists to identify relevant papers. We searched grey literature sources, conference proceedings, and clinical trials registries in September 2019. Database searches were re-run in June 2021 and potentially relevant studies listed as awaiting classification or ongoing. SELECTION CRITERIA: This review assessed the effects of interventions, evaluated in randomised and quasi-randomised trials, intended to enhance interpersonal communication about EoL care between patients expected to die within 12 months, their family members and carers, and health practitioners involved in their care. Patients of any age from birth, in any setting or care context (e.g. acute catastrophic injury, chronic illness), and all health professionals involved in their care were eligible. All communication interventions were eligible, as long as they included interpersonal interaction(s) between patients and family members or carers and health professionals. Interventions could be simple or complex, with one or more communication aims (e.g. to inform, skill, engage, support). Effects were sought on outcomes for patients, family and carers, health professionals and health systems, including adverse (unintended) effects. To ensure this review's focus was maintained on interpersonal communication in the last 12 months of life,  we excluded studies that addressed specific decisions, shared or otherwise, and the tools involved in such decision-making. We also excluded studies focused on advance care planning (ACP) reporting ACP uptake or completion as the primary outcome. Finally, we excluded studies of communication skills training for health professionals unless patient outcomes were reported as primary outcomes. DATA COLLECTION AND ANALYSIS: Standard Cochrane methods were used, including dual review author study selection, data extraction and quality assessment of the included studies. MAIN RESULTS: Eight trials were included. All assessed intervention effects compared with usual care. Certainty of the evidence was low or very low. All outcomes were downgraded for indirectness based on the review's purpose, and many were downgraded for imprecision and/or inconsistency. Certainty was not commonly downgraded for methodological limitations. A summary of the review's findings is as follows. Knowledge and understanding (four studies, low-certainty evidence; one study without usable data): interventions to improve communication (e.g. question prompt list, with or without patient and physician training) may have little or no effect on knowledge of illness and prognosis, or information needs and preferences, although studies were small and measures used varied across trials.  Evaluation of the communication (six studies measuring several constructs (communication quality, patient-centredness, involvement preferences, doctor-patient relationship, satisfaction with consultation), most low-certainty evidence): across constructs there may be minimal or no effects of interventions to improve EoL communication, and there is uncertainty about effects of interventions such as a patient-specific feedback sheet on quality of communication.  Discussions of EoL or EoL care (six studies measuring selected outcomes, low- or very low-certainty evidence): a family conference intervention may increase duration of EoL discussions in an intensive care unit (ICU) setting, while use of a structured serious illness conversation guide may lead to earlier discussions of EoL and EoL care (each assessed by one study). We are uncertain about effects on occurrence of discussions and question asking in consultations, and there may be little or no effect on content of communication in consultations.  Adverse outcomes or unintended effects (limited evidence): there is insufficient evidence to determine whether there are adverse outcomes associated with communication interventions  (e.g. question prompt list, family conference, structured discussions) for EoL and EoL care. Patient and/or carer anxiety was reported by three studies, but judged as confounded. No other unintended consequences, or worsening of desired outcomes, were reported. Patient/carer quality of life (four studies, low-certainty evidence; two without useable data): interventions to improve communication may have little or no effect on quality of life.  Health practitioner outcomes (three studies, low-certainty evidence; two without usable data): interventions to improve communication may have little or no effect on health practitioner outcomes (satisfaction with communication during consultation; one study); effects on other outcomes (knowledge, preparedness to communicate) are unknown. Health systems impacts: communication interventions (e.g. structured EoL conversations) may have little or no effect on carer or clinician ratings of quality of EoL care (satisfaction with care, symptom management, comfort assessment, quality of care) (three studies, low-certainty evidence), or on patients' self-rated care and illness, or numbers of care goals met (one study, low-certainty evidence). Communication interventions (e.g. question prompt list alone or with nurse-led communication skills training) may slightly increase mean consultation length (two studies), but other health service impacts (e.g. hospital admissions) are unclear. AUTHORS' CONCLUSIONS: Findings of this review are inconclusive for practice. Future research might contribute meaningfully by seeking to fill gaps for populations not yet studied in trials; and to develop responsive outcome measures with which to better assess the effects of communication on the range of people involved in EoL communication episodes. Mixed methods and/or qualitative research may contribute usefully to better understand the complex interplay between different parties involved in communication, and to inform development of more effective interventions and appropriate outcome measures. Co-design of such interventions and outcomes, involving the full range of people affected by EoL communication and care, should be a key underpinning principle for future research in this area.

Psychological, functional and social outcomes in adolescent and young adult cancer survivors over time: A systematic review of longitudinal studies.

OBJECTIVE: Most adolescents and young adults (AYA) can expect to survive a cancer diagnosis and treatment, but all will be left with the potential of long-term negative effects that can impact their ability to reach their full potential in life. Understanding aspects of psychological, functional, and social health and well-being outcomes, is pivotal for optimising long-term well-being. METHODS: We completed a systematic review of longitudinal studies reporting outcomes after anti-cancer treatment for Adolescents and Young Adults diagnosed between the age of 12-29 years according to established systematic review processes. The protocol was registered with PROSPERO (ID: CRD 42020203116). RESULTS: Thirteen reports from 10 studies met eligibility criteria representing 17,645 individuals (50.3% female, mean age at diagnosis 22 years, and 26 years at last, follow up). Eleven reports were from eight quantitative studies that relied on self-report surveys and two were qualitative studies. Psychological outcomes were reported to improve over time, as were functional health outcomes, although reported health behaviours were inconsistent between studies. Neurocognitive deficits were reported to affect the ability to return to work and impacts on fertility and sexuality were sustained over time. CONCLUSIONS: While some outcomes for AYA are reported to improve over time, particularly for physical functioning, and anxiety and depression, the long-term impact of cancer on many important domains remains largely unknown. Specifically, the evidence to understand what changes occur over time, and when, remains underdeveloped.

Documentation of Symptoms in Children Newly Diagnosed With Cancer Highlights the Need for Routine Assessment Using Self-report.

BACKGROUND: Symptom management is a cornerstone of quality care and has the potential to vastly influence patient experiences. The supportive care needs of children, however, are not well described. OBJECTIVE: The aims of this study were to describe documentation about assessment and occurrence of symptoms in medical records of children with cancer and to compare the profile of documented symptoms with child self-report. METHODS: Twelve weeks of medical records of children (8-18 years) newly diagnosed with cancer were reviewed, and data were extracted regarding symptom assessment and occurrence. A second cohort of children attending oncology outpatients completed the electronic Symptom Screening in Pediatrics self-report of symptom bother. They also answered additional questions about other symptoms and the experience of self-report. We evaluated the profile of symptoms recorded as assessed by healthcare providers and self-reported by children. RESULTS: One thousand three hundred sixteen symptoms were identified in 3642 assessments. The symptoms most commonly documented by medical and nursing staff were nausea, pain, and appetite. Allied health staff most frequently documented fatigue, feeling scared, or sad. Forty-eight children completed self-report for the same symptoms and identified fatigue, appetite, and taste were the most bothersome. Children were positive about the experience of completing self-report. CONCLUSION: This study adds further to the evidence about the importance of obtaining information beyond routine clinical assessment from children themselves. IMPLICATIONS FOR PRACTICE: Healthcare providers do not routinely identify all distressing symptoms during clinical encounters. Use of patient-reported outcome measures in children is feasible and acceptable and empowers children to communicate about symptoms, which can facilitate prompt intervention.

Adolescents and Young Adults with Cancer: Barriers in Access to Psychosocial Support.

Purpose: Adolescents and young adults (AYAs) experience cancer at a time of significant developmental transition. Both disease and treatment impact psychosocial well-being in significant, persistent ways. While the impacts are now described, and the need for psychosocial care is increasingly well recognized, to date, the barriers in access to care have not been well delineated. This is essential to understand to facilitate access to appropriate care and improve outcomes. Methods: This study explored the barriers in access to psychosocial care for young people. Semistructured, audio-recorded interviews were undertaken with 16 AYAs aged 15-25 years. Eligible participants were diagnosed within the previous 24 months and recruited through the Queensland Youth Cancer Service (QYCS). Transcribed interviews were analyzed using content analysis. Results: Barriers in access to support were related to person-centered, service-related, and systemic factors. Barriers experienced at diagnosis and during treatment were less common compared with barriers after treatment; these were significant and largely related to a lack of holistic, multidisciplinary survivorship care. Conclusion: Barriers in access to psychosocial care are multifactorial, although most can be addressed through health-service responses. Ensuring standardized referral and repeated introduction of psychosocial care for young people is imperative, regardless of location of treatment. Flexible services are especially important for patients treated across different facilities. The development of comprehensive post-treatment survivorship models of care is also essential. Continued evaluation of the experience of young people and the barriers they face is also crucial to ensure responsive service development and promote optimal care.

Cancer Incidence, Mortality, and Survival for Children, Adolescents, and Young Adults in Queensland Between 1987 and 2016.

Purpose: Cancer remains the most common cause of disease-related death among young people and carries a significant burden. In the absence of prior state-based Australian epidemiological studies, this retrospective cohort study reviewed all cases of invasive cancer diagnosed in Queensland children, adolescents, and young adults (AYAs) (0-39 years) from 1987 to 2016 using the Queensland Oncology Repository (QOR). Methods: Cancers were classified according to Surveillance, Epidemiology and End Results (SEER) AYA site recode. Age-standardized rates (ASRs) were calculated. JoinPoint regression examined trends in ASRs across three age cohorts, for three decades (1987-1996, 1997-2006, and 2007-2016). Results: In total, 3,576 children aged 0-14 years (ASR = 15.2/100,000), 6,441 aged 15-24 years (ASR = 39.3/100,000), and 29,923 (ASR = 122.6/100,000) aged 25-39 years were diagnosed. Incidence increased for female children, and leukemia was the most common diagnosis. For those 15-24 years, incidence increased initially before decreasing and was higher than other nationally reported rates. For those 25-39 years, incidence increased. For the older cohorts, the most common diagnosis was melanoma. All cohorts demonstrated a decline in mortality and improvement in 5-year relative survival, with those 0-14 years demonstrating the greatest gains. The lowest survival for all cohorts was associated with central nervous system tumors. Conclusion: These results highlight areas in need of further investigation to improve survival, reduce the burden of cancer for young people, and aid service delivery. Future studies should focus on cancer biology, early detection, barriers in access to clinical trials, innovative models of care, improved data collection, and patient-reported outcomes.

Normal saline (0.9% sodium chloride) versus heparin intermittent flushing for the prevention of occlusion in long-term central venous catheters in infants and children.

BACKGROUND: Guidelines and clinical practice for the prevention of complications associated with central venous catheters (CVC) around the world vary greatly. Most institutions recommend the use of heparin to prevent occlusion; there is debate, however, regarding the need for heparin and evidence to suggest normal saline (0.9% sodium chloride) may be as effective. The use of heparin is not without risk, may be unnecessary and is also associated with increased cost. This is an update of the review published in 2015. OBJECTIVES: To assess the clinical effects (benefits and harms) of intermittent flushing of normal saline versus heparin to prevent occlusion in long-term central venous catheters in infants and children. SEARCH METHODS: The Cochrane Vascular Information Specialist searched the Cochrane Vascular Specialised Register, CENTRAL, MEDLINE, Embase and CINAHL databases; World Health Organization International Clinical Trials Registry Platform and ClinicalTrials.gov trials register to 9 April 2019. We also undertook reference checking, citation searching and contact with study authors to identify additional studies. SELECTION CRITERIA: We included randomised controlled trials (RCTs) that compared the efficacy of intermittent flushing with normal saline versus heparin to prevent occlusion of long-term CVCs in infants and children aged up to 18 years of age. We excluded temporary CVCs and peripherally inserted central catheters (PICC). DATA COLLECTION AND ANALYSIS: Two review authors independently assessed trial inclusion criteria, trial quality and extracted data. We assessed study quality with the Cochrane 'Risk of bias' tool. For dichotomous outcomes, we calculated the rate ratio (RR) and corresponding 95% confidence interval (CI). We pooled data using a random-effects model; and we used GRADE to assess the overall certainty of the evidence supporting the outcomes assessed in this review. MAIN RESULTS: We identified one new study for this update, bringing the total number of included studies to four (255 participants). The four trials directly compared the use of normal saline and heparin; the studies all used different protocols for the intervention and control arms, however, and all used different concentrations of heparin. Different frequencies of flushes were also reported between studies. In addition, not all studies reported on all outcomes. The certainty of the evidence ranged from moderate to very low because there was no blinding; heterogeneity and inconsistency between studies was high; and the CIs were wide. CVC occlusion was assessed in all four trials. We were able to pool the results of two trials for the outcomes of CVC occlusion and CVC-associated blood stream infection. The estimated RR for CVC occlusion per 1000 catheter days between the normal saline and heparin groups was 0.75 (95% CI 0.10 to 5.51; 2 studies, 229 participants; very low certainty evidence). The estimated RR for CVC-associated blood stream infection was 1.48 (95% CI 0.24 to 9.37; 2 studies, 231 participants; low-certainty evidence). The duration of catheter placement was reported to be similar for the two study arms in one study (203 participants; moderate-certainty evidence), and not reported in the remaining studies. AUTHORS' CONCLUSIONS: The review found that there was not enough evidence to determine the effects of intermittent flushing with normal saline versus heparin to prevent occlusion in long-term central venous catheters in infants and children. It remains unclear whether heparin is necessary to prevent occlusion, CVC-associated blood stream infection or effects duration of catheter placement. Lack of agreement between institutions around the world regarding the appropriate care and maintenance of these devices remains.

Affording opportunities to discuss deterioration in paediatric palliative care consultations: a conversation analytic study.

OBJECTIVE: Discussing the potential deterioration of a child who has a life-limiting condition has recognised benefits for future care, but can be challenging in a clinical context where uncertain illness trajectories are common. Existing research is restricted to indirect forms of evidence such as self-report data from clinicians and families. This study directly explores how discussions about deterioration are managed within actual paediatric palliative care consultations. METHODS: 9 consultations were video recorded in an Australian paediatric palliative care service. Each consultation involved the same paediatric palliative care specialist. Conversation analysis was used to identify and explore recurrent ways in which discussions about deterioration came to be realised. FINDINGS: The study identified two communicative practices used by a paediatric palliative care specialist that afforded opportunities to discuss deterioration: (1) soliciting the family's agenda for the consultation; (2) initiating and maintaining topics where discussing deterioration is a relevant possibility. Across these different practices, a common feature was indirect initiation of discussions about deterioration. This approach made such discussions possible, but without mandating or even suggesting that such discussion must occur. CONCLUSIONS: These communicative practices balance the benefit of discussing deterioration against a recognised importance of allowing discussions to be directed by a child's family. This was achieved by creating opportunities for discussing deterioration, without making such discussions necessary.

Finding a way with words: Delphi study to develop a discussion prompt list for paediatric palliative care.

BACKGROUND: Effective communication is a cornerstone of quality paediatric palliative care. Families report struggling, however, to know what to discuss, with whom, and when. Although question prompt lists exist for adult palliative care, they do not suit the unique circumstances of paediatric palliative care. AIM: To develop a prompt list suitable for paediatric palliative care. DESIGN: Underpinned by Delphi methodology, a six-phase procedure was adopted: (1) drafting items based on the findings of a literature review, (2) condensing the list of items based on group discussion, (3) refining items based on a survey of expert healthcare professionals, (4) additional refining of items based on another survey of professionals, (5) further refining of items based on cognitive interviews with family members, and (6) final review by healthcare professional and family member groups. PARTICIPANTS: Three participant groups were involved during various phases: (1) members of an Australasian paediatric palliative care national reference group, (2) healthcare professionals associated with a local paediatric palliative care service, and (3) family members who were users of the same local service. RESULTS: Through multi-phase consultation across participant groups, the draft question prompt list was refined progressively to 28 items, split across two booklets to allow end-of-life items to be provided separately, and reconceptualised as a discussion prompt list rather than a question prompt list. CONCLUSION: By involving representatives of major stakeholder groups, this study has facilitated the design of a prompt list suited to the circumstances of paediatric palliative care. Future research should trial the effectiveness of this resource.

Discussing death: Making end of life implicit or explicit in paediatric palliative care consultations.

OBJECTIVE: To consider whether and how family members and clinicians discuss end of life during paediatric palliative care consultations. METHODS: Nine naturally occurring paediatric palliative care consultations were video recorded and analysed using conversation analytic methods. ANALYSIS: Focusing on three consultations in which end of life was treated as a certain outcome, analysis explored ways in which end of life was made either implicit or explicit within these consultations. Our analysis suggests that end of life was made explicit when: 1) ancillary to the current focus of discussion, 2) in relation to someone else's child, or 3) specifically relevant to the local context of the discussion. More commonly, in all other instances in the data, end of life was made implicit during discussions relating to this matter. CONCLUSION: This preliminary research indicates that the local context of a conversation can influence how end of life is mentioned and discussed. PRACTICE IMPLICATIONS: Clinicians often are encouraged to promote honest and 'open' discussions about end of life. Our findings show that it is not necessary to explicitly mention end of life in order to discuss it.

Relationships Between Financial Toxicity and Symptom Burden in Cancer Survivors: A Systematic Review.

CONTEXT: Financial toxicity (FT) is used to describe the financial distress/hardship associated with cancer and its treatment. OBJECTIVES: The aim of this review was to explore the relationship between FT and symptom burden. METHOD: A systematic review was performed in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. We searched MEDLINE, EMBASE, and CINAHL (from January 2000 to January 2018) and accepted quantitative, mixed-methods and qualitative studies. Data were extracted and appraised by two reviewers. Owing to significant heterogeneity in the included studies, a narrative synthesis was performed. RESULTS: Nine studies involving 11,544 cancer survivors were included. Of these nine studies, eight were of high quality. The relationships between FT and psychological symptoms and physical symptoms were examined in eight and three studies, respectively. Six studies reported a positive relationship between FT and depression. Three studies found a positive association between FT and anxiety. Limited evidence was found for an association between FT and stress, fear of recurrence, spiritual suffering, pain, and overall symptom burden. CONCLUSIONS: A relatively clear association exists between FT and psychological symptoms. Clinicians should regularly screen for, assess, and manage emotional distress that may be attributed to FT. Although the causal pathway is not known, future intervention studies aimed at minimizing or preventing FT should evaluate psychological symptoms as secondary outcomes. Little is known about the relationships between FT and physical symptoms. Future research should overcome methodological limitations by incorporating longitudinal data collection, use of mixed-methods approaches, and homogeneity of samples.

How telehealth facilitates the provision of culturally appropriate healthcare for Indigenous Australians.

Introduction The aim of this study was to explore how telehealth facilitates or impedes the provision of culturally appropriate healthcare to Indigenous Australians from the perspective of staff at an Aboriginal Community Controlled Health Service (ACCHS). Methods An exploratory qualitative study was performed. Semi-structured interviews were conducted with nine ACCHS staff. Interview transcripts were analysed using thematic analysis. Results One central theme and three sub-themes were identified. The central theme of Care provided in a supportive environment describes how telehealth enabled specialist consultations to be conducted in the safe environment of an ACCHS instead of a mainstream health service. The first sub-theme described how telehealth improved affordability and convenience and brought a reduction in the stress of healthcare. The second sub-theme explained the importance of the presence of an Indigenous health worker to facilitate culturally appropriate healthcare. The third sub-theme described how telehealth supported a holistic view of health. Discussion Our findings show culturally appropriate healthcare may be enhanced by the use of telehealth because it allows care to be provided in the supportive environment of an ACCHS. It allows the community member to have the advocacy and assistance of an Indigenous health worker and reduces the burden of travel and dislocation from community and family.

Through Their Eyes: Parental Perceptions on Hospital Admissions for Febrile Neutropenia in Children With Cancer.

Febrile neutropenia requires prompt assessment and antibiotic administration and is the most common reason for unexpected hospital admission in pediatric oncology. Parents are expected to be vigilant and "drop everything" to take their child to their nearest hospital for assessment if fever occurs. Delays in antibiotic administration are associated with poorer outcomes; however, delays are common. Our aim was to understand and describe the lived experience of parents of children with cancer who received treatment for fever with confirmed/suspected neutropenia. We used descriptive phenomenological concepts to undertake and analyze interviews with parents, who were asked to describe their recent experience of hospitalization in Queensland, Australia. Nine participants were interviewed. Five children were treated in the tertiary treating center and four were treated in smaller regional towns. Three main categories were identified that shaped and characterized parents' experiences: being heard, confidence in capabilities of health care professionals, and living with anticipated distress and uncertainty. Parents' experiences were related to the level they needed to advocate for their child's care across all themes. Familiarity with health care professionals increased confidence and improved parents' experiences. Maintaining vigilance and managing the child and family's response to an unexpected admission had a substantial negative effect on parents. Understanding parents' experiences and perceptions of the management of febrile neutropenia adds to the current body of knowledge and offers potential new insights to improve clinical practice.

Healthcare Users' Experiences of Communicating with Healthcare Professionals About Children Who Have Life-Limiting Conditions: A Qualitative Systematic Review.

BACKGROUND: Globally, an estimated eight million children could benefit from palliative care each year. Effective communication about children with life-limiting conditions is well recognized as a critical component of high-quality pediatric palliative care. OBJECTIVE: To synthesize existing qualitative research exploring healthcare users' experiences of communicating with healthcare professionals about children with life-limiting conditions. DESIGN: The results of a systematic literature search were screened independently by two reviewers. Raw data and analytic claims were extracted from included studies and were synthesized using thematic analysis methods for systematic reviews. DATA SOURCES: MEDLINE, PubMed, CINAHL, Embase, PsycINFO, Scopus, Web of Science, ProQuest, and ScienceDirect were searched for articles published in English between 1990 and May 2017. RESULTS: This review included 29 studies conducted across 11 countries and involving at least 979 healthcare users (adults [n = 914], patients [n = 25], and siblings [n = 40]). The four domains of communication experience identified through thematic synthesis are: Information, Emotion, Collaboration, and Relationship. Although included studies were from a range of settings and diverse populations, further research is needed to explore whether and how domains of communication experience differ across settings and populations. In particular, further research about children's palliative care experiences is needed. CONCLUSIONS: Healthcare users typically value communication with healthcare professionals: that (1) is open and honest, (2) acknowledges emotion, (3) actively involves healthcare users, and (4) occurs within established and trusting relationships.

Queensland Youth Cancer Service: A Partnership Model to Facilitate Access to Quality Care for Young People Diagnosed with Cancer.

Global recognition of the need to improve outcomes for adolescents and young adults (AYA) with cancer has led to the development of specific oncology programs and services. In Australia, Youth Cancer Services (YCS) are now established across the country. While each service has been shaped by nationally agreed principles, program development has been influenced by local policy and geographic differences. Queensland is a vast state with a widely dispersed population; coordination of cancer services for young people across this landscape presents unique challenges. The Queensland YCS (QYCS) work in a consultative partnership model with primary treating teams, across both pediatric and adult tertiary cancer services. Understanding how cancer services approach challenges and service development can provide guidance for other developing services. In this article, we describe the goals and development of QYCS and review the outcomes achieved in the service to date. We reviewed referral data and retrieved statewide clinical activity from the web-based data system. We compared these data with cancer registry data to identify disparities and areas for service development. While the service has achieved notable outcomes, challenges remain. These include recruitment of appropriately skilled and trained health professionals for this newly developing area of oncology. In addition, there is an ongoing need to advocate for this relatively small patient group, and to promote awareness and understanding of the need for AYA-specific services. With the dispersed population and concentration of services in metropolitan Brisbane, identifying and testing new innovative models, including telehealth, to reach all AYA diagnosed with cancer regardless of location of care are priorities.

Educational Needs of Health Professionals Caring for Adolescents and Young Adults with Cancer.

BACKGROUND: Young people with cancer have distinct clinical and psychosocial needs during and after cancer treatment. However, as adolescent and young adult (AYA) cancer is rare, and only recently recognized as specialty, health professionals may not have the skills, competence, and confidence to meet the needs of the young patient with cancer. The aim of this study was to identify the learning needs of health professionals providing cancer care to adolescents and young adults before and following the introduction of a state-wide AYA cancer education program. METHODS: A survey of educational needs of health professionals was undertaken in 2013 at the commencement of the Queensland Youth Cancer Service. The survey was used to develop the education program of the service. The education program was delivered across the state in a variety of formats, covering a range of topics throughout 2013-2016. The second survey was completed in 2017. Results were compared to identify if educational needs or the self-rated confidence of health professionals in regard to AYA cancer care had changed over time. RESULTS: One hundred twenty-two participants completed the first survey and 73 completed the second. The most prominent educational needs in 2013 were palliative care and biomedical topics such as understanding AYA growth and development as well as specific AYA cancers and treatment. The second survey identified that palliative care education remained important; however, there was a shift toward health professionals request for more psychosocial and practical education on topics including fertility, sexuality, and managing late effects. CONCLUSION: To provide high-quality healthcare to AYAs with cancer, health professionals require ongoing opportunities for education and training.