Exploring the family experience of children aged 2-4 years receiving daily vosoritide injections: A qualitative study.

PURPOSE: Vosoritide is administered as a daily subcutaneous injection in children with achondroplasia. In clinical trials, families of children aged 2-4 years reported difficulty with drug administration due to child fear, pain, and distress. Study aims were to gain a better understanding of the current vosoritide administration experience in this cohort and to investigate whether topical anaesthesia and ice application prior to injections improved the child and family experience. DESIGN AND METHODS: A qualitative descriptive study design ensured in-depth understanding of family experience. Parents were interviewed to explore experience of vosoritide administration for their child at two time points, before (Phase 1) and after (Phase 2) the introduction of topical anaesthesia and ice application prior to injections. Interviews were analysed using thematic analysis. RESULTS: Seven families participated. Children's ages ranged from 2 years 2 months to 3 years 11 months. Five themes emerged from data analysis: (1) The reality of the burden of care; (2) Child experience as the greatest obstacle; (3) Parents juggle multiple emotional considerations; (4) Many factors may impact experience; and (5) Short-term and long-term impacts. CONCLUSIONS: Administration of vosoritide in this cohort presents multiple challenges for families. Factors which influenced experience differed between families. Responses to topical anaesthesia and ice application also varied between children, improving administration experience for some children and worsening experience for others. PRACTICE IMPLICATIONS: This study highlights the need for individualised care for young children receiving daily injections. Support should be provided to families to identify factors that improve experience.

Truth-telling to the seriously ill child - Nurses' experiences, attitudes, and beliefs.

BACKGROUND: Nurses play an integral role in the care of children hospitalised with a serious illness. Although information about diagnostics, treatments, and prognosis are generally conveyed to parents and caregivers of seriously ill children by physicians, nurses spend a significant amount of time at the child's bedside and have an acknowledged role in helping patients and families understand the information that they have been given by a doctor. Hence, the ethical role of the nurse in truth disclosure to children is worth exploring. METHODS: A systematic academic database and grey literature search strategy was conducted using CINAHL, Medline Psych Info, and Google Scholar. Keywords used included truth, children, nurse, disclosure, serious illness, and communication. A total of 17 publications of varying types were included in the final data set. ETHICAL CONSIDERATIONS: As this was a review of the literature, there were no direct human participants. Empirical studies included in the review had received ethics approval. RESULTS: Of the 17 articles included in the review, only one directly reported on the experiences of nurses asked to withhold the truth from patients. Empirical studies were limited to HIV-positive children and children diagnosed with cancer and the dying child. CONCLUSION: A paucity of literature exploring the experiences, attitudes, and beliefs of nurses with regard to truth-telling to seriously ill children is evident. Little consideration has been given to the role nurses play in communicating medical information to children in a hospital setting. The 17 articles included in the review focused on cancer, and HIV, diagnosis, and end-of-life care. Further research should be undertaken to explore the experiences and attitudes of nurses to clinical information sharing to children hospitalised with a wide range of serious illnesses and in diverse clinical scenarios.

Shepherding parents to prepare for end-of-life decision-making: a critical phenomenological study of the communication approach of paediatricians caring for children with life-limiting conditions in Australia.

BACKGROUND/OBJECTIVES: Shared decision-making is widely accepted as the best approach for end-of-life decision-making for children with life-limiting conditions. Both paediatricians and parents find benefit in preparing for such decisions. However, little detail is known about this preparatory process. This study aims to explore how paediatricians prepare parents for end-of-life decision-making for a child with a life-limiting condition using clinical simulation. DESIGN: Individual, semistructured, post-simulation qualitative interviews of paediatricians and parent-actors. SETTING: Acute intensive and long-term outpatient paediatric care in Victoria, Australia. PARTICIPANTS: 18 purposively sampled paediatricians who treat children with life-limiting conditions and the two parent-actors involved in all simulations. Paediatricians were excluded if they assisted in the study design, worked within specialist palliative care teams or did not provide clinical care outside the neonatal period. RESULTS: Three key themes in a preparatory process (termed 'shepherding') were identified: (1) paediatricians aim to lead parents along a pathway to future end-of-life decisions, (2) paediatricians prefer to control the pace of these discussions and (3) paediatricians recognise they need to have courage to face risk with this preparation. Paediatricians use a variety of shepherding strategies to influence the pace, content and framing of discussions, which may help prepare parents to make the best end-of-life treatment decisions when the time comes. CONCLUSIONS: Shepherding is a newly identified, subtle process intended to influence parents by guiding their understanding of their child's health and potential suffering in advance of decision-making. Shepherding does not fit within current descriptions of physicians' decision-making influence. Paced reflection, thinking and provision of information are shepherding strategies preferred by paediatricians, and these appear the same regardless of whether paediatricians intend to steer parents towards particular treatment decisions or simply prepare them for the process of decision-making. Further study about the intention of this influence and parental perception of this communication is needed.

Immunization Coverage in Young People Experiencing Homelessness and the Impact of a Nurse-led Program.

OBJECTIVES: To identify the proportion of young people experiencing homelessness who are immunized against vaccine-preventable diseases, and to evaluate the impact of a nurse-led immunization program to improve vaccination coverage in this population. METHODS: A retrospective audit of electronic medical records included 400 participants aged 15 to 24 years who had an encounter with the Young People's Health Service, a nurse-led clinic co-located with a specialist youth homelessness service in Melbourne, Australia, between February 2019 and May 2021. RESULTS: Integrating an immunization nurse within a youth specialist homelessness service increased the percentage of young people who were up-to-date with routine vaccinations from 6.0% (n = 24) to 38.8% (n = 155). Intersecting social determinants of health that increased participants' risk of vaccine preventable diseases, and of missing routine vaccines, were common. CONCLUSIONS: Incomplete coverage of routine vaccines is common in young people accessing homelessness services, and this coverage was improved when young people encountered an immunization nurse while accessing support from a specialist youth homelessness service. As a service model, nurse-led community health clinics co-located within homelessness providers can improve vaccination coverage, and therefore health outcomes, of young people experiencing or at risk of homelessness.

The scope of ethical dilemmas in paediatric nursing: a survey of nurses from a tertiary paediatric centre in Australia.

BACKGROUND: No previous study has provided evidence for the scope and frequency of ethical dilemmas for paediatric nurses. It is essential to understand this to optimise patient care and tailor ethics support for nurses. RESEARCH AIM: The aim of this study was to explore the scope of nurses' ethical dilemmas in a paediatric hospital and their engagement with the hospital clinical ethics service. RESEARCH DESIGN: This study used a cross-sectional survey design. PARTICIPANTS AND RESEARCH CONTEXT: Paediatric nursing staff in a tertiary paediatric centre in Australia completed an online survey asking about their exposure to a range of ethical dilemmas and their knowledge of the clinical ethics service. Analysis used descriptive and inferential statistics. ETHICAL CONSIDERATIONS: Ethical approval was granted from the hospital research committee. The survey was anonymous, and no identifying details of participants were collected. RESULTS: Paediatric nurses experienced a wide range of ethical dilemmas frequently, both in the intensive care and general areas. Knowledge and use of the clinical ethics service was poor and the most frequent challenge for nurses in managing dilemmas was feeling powerless. CONCLUSION: There is a need to recognise the moral burden of ethical dilemmas for paediatric nurses in order to foster ethical sensitivity, and to provide adequate support to improve care and mitigate nursing moral distress.

Ethical challenges faced by healthcare workers in pediatric oncology care during the COVID-19 pandemic in Australia.

OBJECTIVE: This qualitative study examined ethical challenges reported by healthcare professionals (HCPs) working in a large Australian pediatric oncology center during a period of strict COVID-19 restrictions. METHODS: We conducted semi-structured interviews with 21 HCPs who provided pediatric cancer care during the pandemic in 2020, during strict lockdown periods. Interviews examined the difficulties they faced, as well as their own ethical evaluation of the impact of COVID-19 policies on oncology care. Data were analyzed using inductive content analysis and thematic analysis. RESULTS: HCPs faced several challenges, primarily originating from hospital restrictions, which led to changes in usual clinical practices. These challenges included delivering care with personal protective equipment (PPE), the impact of a one-parent visitation policy, changes in psychosocial and allied health services, and COVID-19 swabbing policies. Overall, there was consensus from participants that hospital restrictions were justified and, while difficult, HCPs simply had to provide the best care possible given the circumstances. However, participants described decreased capacity to deliver holistic patient care and, in some instances, a tendency to avoid ethical reflection. Lastly, there was a consistent theme of shame and sense of responsibility underlying some participants' anxiety around inadvertently transmitting COVID-19 to immunocompromised patients. CONCLUSION: Our findings show that many staff felt unease at the disruptions in patient care due to COVID-19 restrictions. Some HCPs indicated a degree of moral distress, with a possibility of moral injury among some HCPs. A focus on ethical recovery could assist in preventing any ongoing difficulties among HCPs because of their experiences.

Exploring the impact of the COVID-19 environment on nursing delivery of family-centred care in a paediatric hospital.

AIMS AND OBJECTIVES: To understand how the pandemic environment impacted the delivery of FCC of children and families from a nursing perspective in a major tertiary paediatric hospital. BACKGROUND: Family-centred care (FCC) is a well-established framework to promote parental involvement in every aspect of a child's hospitalization, however, rules and restrictions in place during the COVID-19 pandemic affected the ways in which Family-centred Care could be delivered in practice. DESIGN: This is a qualitative exploratory descriptive study to elicit the perspective of paediatric nurses delivering care to children in a hospital during the COVID-19 pandemic in Victoria, Australia. METHODS: Nurses from all subspecialties in a tertiary paediatric hospital were invited to participate in virtual focus groups to discuss their experience of delivering FCC during the COVID-19 pandemic. Focus groups were recorded and transcribed, then analysed using Framework Analysis. RESULTS: Nineteen nurses participated across seven focus groups during June and July 2020. The four themes-Advocating with empathy, Enabling communication, Responding with flexibility, and Balancing competing considerations-and the eight subthemes that were generated, outline how nurses deliver FCC, and how these FCC actions were impacted by the COVID-19 environment and the related hospital restrictions. CONCLUSION: This study documents the experiences, resilience and resourcefulness of paediatric nurses in Australia during the COVID-19 pandemic as well as moving Family-centred Care from a theoretical framework into a practical reality. IMPACT: The findings from this study should inform consideration of the impacts of public health policies during infectious disease outbreaks moving forward. In addition by describing the core actions of Family-centred Care, this study has implications for educational interventions on how to translate FCC theory into practice. No public or patient contribution as this study explored nursing perceptions only.

Informing Simulation Design: A Qualitative Phenomenological Study of the Experiences of Bereaved Parents and Actors.

INTRODUCTION: Simulations, which represent reality, are effective in pediatric healthcare communication skills education and training. Parents are increasingly engaged in simulation development, particularly for authentic character development, to help achieve greater psychological fidelity. For simulated encounters related to a child's end-of-life, involvement of bereaved parents would make sense. However, this is challenging because there is limited research to guide their inclusion and significant responsibility for any approach to be thoughtful and psychologically safe for participating parents. This study explores the impact and experiences of bereaved parents and actors who participated in simulation design. METHODS: This qualitative phenomenological study involved five bereaved parents and two actors who participated in a full-day workshop to design and develop characters for use in a simulation. Individual semistructured interviews were conducted up to four weeks after the workshop. Data collected from these telephone interviews were analyzed using inductive content analysis. RESULTS: Bereaved parents found the workshop emotionally challenging but positive, worthwhile, and beneficial. Similarly, actors found the workshop helpful in character development and, although it was an intense experience for them, it validated the importance of their work. Key elements of our research findings could inform future such activities. CONCLUSIONS: Involving bereaved parents in simulation design can be psychologically safe and beneficial for both parents and actors. Ongoing involvement of bereaved parents may lead to higher-quality simulated experiences, allowing clinicians to practice skills to enhance care provided at a child's end-of-life.

Vaccination in people with disability: a review.

People with disabilities are vulnerable to complications from vaccine-preventable diseases, and every effort should be made to ensure equitable access to immunization for this population. This paper aims to summarize the research on immunizations in people with disabilities, in order to ensure a comprehensive understanding of knowledge in this area and direct further research. The literature is weighted towards coverage data that is difficult to synthesize because of the different definitions of disability, and the variety of settings, vaccinations and age groups across the studies. In-depth qualitative data and data from a variety of health-care providers and people with disability is notably lacking. This is vital to redress in order to develop effective immunization interventions in this population.

'Whatever decision you make it will be the right one': A parent's reflection on difficult decision-making in premature birth.

In 2007, our daughter Lily was born prematurely. My husband and I were faced with a very difficult decision about the level of intervention for her, a decision that had to be made in an emergency situation under the pressure of time. As a paediatric nurse I had more knowledge about prematurity than most parents, and it was certainly enough to appreciate the fragility of babies born early, and their uncertain and often complicated path through neonatal intensive care. What I didn't fully appreciate was the key role of health professionals, not only in providing care, but in supporting difficult decision-making. In the years since Lily's birth I've also reflected on the power of health professionals to shape, or reshape, the narrative of premature birth which is pivotal in the long-term psychological trajectory of parents.

The uptake of adolescent vaccinations through the School Immunisation Program in specialist schools in Victoria, Australia.

BACKGROUND: As part of the National Immunisation Program (NIP) students in Australia receive adolescent immunisations through the School Immunisation Program at 12 to 13 years. For children with disabilities attending specialist schools, no vaccine uptake data is collected at this time point. We aimed to determine uptake of diphtheria-tetanus-pertussis (dTpa) and Human Papillomavirus (HPV) immunisations amongst young people with disabilities in specialist schools in Victoria. METHODS: A prospective cohort study was conducted in Victoria, Australia. Data was collected on immunisation days in the 2017 school year from specialist schools in Victoria. The school immunisation coordinator entered data online for eligible students for receipt of dTpa and HPV on each school immunisation day. Demographic data, motor and intellectual function of students and reasons for non-receipt of dTpa and HPV vaccine were recorded. Data were analysed using descriptive statistics. RESULTS: Of 73 eligible specialist schools in Victoria, 28 (38%) participated. dTpa was received by 63% (237/374) of participating students and HPV dose 1 (HPV1) was received by 66% (76/114) females and 67% (174/260) male students respectively. Three doses of HPV were received by only 41% (100/241) of students. The main reasons for missed immunisation were absence from school, lack of consent and inability to immunise due to the student's behaviour and/or anxiety. CONCLUSION: This is the first study in Australia to report that uptake of adolescent immunisations in specialist schools for young people with a disability is significantly lower than in mainstream settings. Comparative data during the same time period for students in mainstream schools demonstrated higher uptake, at 89% for dTpa and 75% for three doses of HPV. These data highlight the inequity of receipt of school-based immunisations for this group of adolescents, the barriers to which could be more thoroughly explored through qualitative inquiry from a socio-ecological perspective.

"B in IT" - a community-based model for the management of hepatitis B patients in primary care clinics using a novel web-based clinical tool.

BACKGROUND: The current model of care for the treatment of chronic hepatitis B (CHB) in Australia is through specialist Hepatology or Infectious Diseases clinics, and limited accredited primary care practices. Capacity is limited, and less than 5% of Australians living with CHB currently access therapy. Increasing treatment uptake is an urgent area of clinical need. Nucleos(t)ide analogue therapy is safe and effective treatment for CHB that is suitable for community prescribing. We have evaluated the success of a community-based model for the management of CHB in primary care clinics using a novel web-based clinical tool. METHODS: Using guidelines set out by the Gastroenterological Society of Australia, we developed an interactive online clinical management tool for the shared care of patients with CHB in primary care clinics, with remote oversight from tertiary hospital-based hepatologists and a project officer. We call this model of care the "B in IT" program. Suitable patients were referred from the specialist liver clinic back to primary care for ongoing management. Compliance with recommended appointments, pathology tests and ultrasounds of patients enrolled in "B in IT" was assessed and compared to that of the same patients prior to community discharge, as well as a matched control group of CHB outpatients continuing to attend a specialist clinic. RESULTS: Thirty patients with CHB were enrolled in the "B in IT" program. Compliance with attending scheduled appointments within 1 month of the suggested date was 87% across all 115 visits scheduled. Compliance with completing recommended pathology within 1 month of the suggested date was 94% and compliance with completing recommended liver ultrasounds for cancer screening within 1 month of the suggested date was 89%. The compliance rates for visit attendance and ultrasound completion were significantly higher than the control patient group (p < 0.0001) and the "B in IT" patients prior to community discharge (p = 0.002 and p = 0.039, respectively). CONCLUSIONS: The "B in IT" program's novel web-based clinical tool supports primary care physicians to treat and monitor patients with CHB. This program promotes community-based care and increases system capacity for the clinical care of people living with CHB.

Parental satisfaction with inpatient care of children with cerebral palsy.

AIM: Children with cerebral palsy (CP) have complex health-care needs. This study examines levels of parental satisfaction with inpatient care for children with CP at a tertiary care hospital to identify areas for improvement. METHODS: Parents/guardians of children with CP and parents/guardians of children without a disability admitted to hospital completed a custom-designed questionnaire assessing six areas of the hospital admission: (i) the admission process; (ii) the child's personal care; (iii) the child's medical care; (iv) overall care of the child; (v) the parent's experience in hospital; and (vi) keeping up to date in hospital. Differences between the two groups were analysed using Student's t-tests. RESULTS: Parents of children with CP were significantly less satisfied with the inpatient care as compared with parents of children without a disability in four of the six categories: 'my child's personal care' (P = 0.0033), 'my child's medical care' (P = 0.0350), 'overall care' (P = 0.0081) and 'my experience in the hospital' (P = 0.0209). When the overall questionnaire was compared between the two groups, parents of children with CP were less satisfied with care than parents of children without a disability (P = 0.0036). CONCLUSION: Parents of children with CP are less satisfied with the inpatient care of their child compared with parents of children without a disability. This information should be instrumental in informing change to ensure that parent satisfaction levels improve to a level consistent with other children admitted to a tertiary care setting.

The Durham experience: promoting dyslexia and dyspraxia friendly schools.

The Durham County Policy Document on Specific Learning Difficulties (dyslexia and dyspraxia) has been developed over a period of years as a countywide response to ensure that children's specific learning difficulties are identified and that schools are equipped to offer a range of appropriate interventions. The content of the policy document is studied in depth along with the training programmes offered by the Learning Support Service and Educational Psychology Service that will support schools in putting the policy into practice. Future developments, including an exciting project on promoting inclusive practice for pupils with Specific Learning Difficulties (dyslexia and dyspraxia), are outlined.