The experiences and perceptions of healthy siblings of children with a long-term condition: Umbrella review.

PROBLEM: The lives of healthy siblings living with a sibling with a long- term condition are often shaped by the family, type of illness, length of illness, age of the child, caregiver demands, and support provided to the family, ill sibling, and healthy sibling. While the experiences of healthy siblings are documented in the literature by parent proxy, literature on healthy siblings self-reported experiences of living with a sibling who has a long-term condition remains scarce. PURPOSE: This umbrella review aims to synthesize reviews on the self-reported experiences of healthy siblings of children living with a sibling who has a long-term condition. ELIGIBILITY CRITERIA: Published peer-reviewed reviews in English language exploring the self-reported experiences of healthy siblings under 24 years old, whose siblings are diagnosed with a long-term condition. SAMPLE: Using a developed search strategy, seven electronic databases (CINAHLPlus, Scopus, PubMed, PsycINFO, Cochrane Database of Systematic Reviews, Clinical Key, and Google Scholar) were searched from 2018 till December 2023. Eleven reviews met the inclusion criteria and were subjected to narrative synthesis. RESULTS: Four themes (adjusting to changes, wanting to help, living the ups and downs, living the changes), and eight subthemes were generated from the syntheses. CONCLUSION: This is the first umbrella review undertaken on healthy siblings self-reported experiences of living with a sibling who has a long-term condition. The impact of a long-term condition on healthy siblings of children with a long-term condition suggests a need for healthcare providers and organisations to provide better emotional, psychological, and informational support to healthy siblings and their families. IMPLICATIONS: Findings from this review will inform healthcare providers, organisations, researchers, and policymakers on the development of future clinical practices and research for healthy siblings.

Parents' experiences of their child's best interests during a hospital stay in Australia.

Determining the child's best interests in a hospital setting will ideally involve the combined views of children, parents, and healthcare professionals. However, few studies have explored parents' experiences of their child's best interests when they engage with the healthcare system. Therefore, this study aimed to explore parents' experiences of their child's best interests during hospitalisation. A descriptive qualitative inductive design using face-to-face parent-child combined interviews, analysed by latent content analysis, was used. Sixteen parents recruited from a tertiary hospital in Western Australia were interviewed. Collaboration, development of trustworthy relationships, and effective communication were essential in shaping parents' experiences of their child's best interests during hospitalisation.

Risk and Protective Factors of Self-harm and Suicidality in Adolescents: An Umbrella Review with Meta-Analysis.

Suicide remains the second most common cause of death in young people aged 10-24 years and is a growing concern globally. The literature reports a vast number of factors that can predispose an adolescent to suicidality at an individual, relational, community, or societal level. There is limited high-level research identifying and understanding these risk and protective factors of adolescent suicidality. The present study used an umbrella review and meta-analysis to synthesize evidence from the review literature in the past 20 years on risk and protective factors of self-harm and suicidality (behavior and ideation) in adolescents. The umbrella review included 33 quantitative reviews with 1149 individual studies on suicidality and self-harm. Based on the data synthesis, it compared the public health impact of exposure on the population of the identified exposure. Bullying victimization was the most attributed environmental exposure for suicidality. The other identified significant school and individual factors were sleeping disturbance, school absenteeism, and exposure to antidepressants. Several significant vulnerable young populations were identified with significantly higher prevalence of suicidality, including lesbian, gay, bisexual, transgender, queer (or questioning) youth and those with mental health disorders, problem behaviors, previous suicidality, self-harm, and gender (female). A person-centered approach emphasizing connectedness and bully-free school environments should be a priority focus for schools, health professionals, and public health policymakers.

Nursing practices to optimise rheumatic fever prevention in a high-risk country: An integrative review.

BACKGROUND: New Zealand is one of the last high-income countries in the world experiencing significant rates of rheumatic fever. Nurses play a crucial role in rheumatic fever prevention; however, little is understood as to how nurses can best achieve this. AIM: To explore nursing practices that optimise rheumatic fever prevention. DESIGN: An integrative review. METHODS: Four electronic databases (CINAHL, SCOPUS, Medline via, and Ovid) were searched for peer-reviewed empirical articles published from 2013 to 2023. Grey literature (guidelines/reports) was also sourced. Critical appraisal was applied using the Mixed-Methods Appraisal Tools and the Joanna Briggs Critical Appraisal checklist. Qualitative Research in Psychology, 3(2), 77-101, thematic analysis method was used to generate themes. RESULTS: Seven research articles and three national reports were included. Four themes-in-depth nursing knowledge and improving prophylaxis adherence, cultural competency, and therapeutic nurse-patient relationships-were found. CONCLUSION: While nursing knowledge and ways to improve injection adherence are essential, being culturally receptive and developing therapeutic relationships are equally important. Without strong and trusting relationships, it is difficult to deliver care required for prevention success. IMPLICATIONS TO CARE: When working with vulnerable populations it is important to be culturally receptive in all interactions with patients and their families. IMPACT: New Zealand has high rates of rheumatic fever, especially among vulnerable populations such as Pacific Islanders and Maori. Nurses are often frontline primary care providers who, when skilled with the right tools, can help reduce the prevalence of this disease. REPORTING METHOD: The Preferred Reporting Items for Systematic Reviews and Meta-Analysis flow chart. PATIENT OR PUBLIC CONTRIBUTION: No Patient or Public Contribution was required for this research.

The long-term impact of COVID-19 on nursing: An e-panel discussion from the International Network for Child and Family Centred Care.

AIM: To explore the International Network for Child and Family Centred Care (INCFCC) members' experiences and views on the long-term impact of COVID-19 on the nursing workforce. BACKGROUND: On the 11 March 2020, the World Health Organization declared COVID-19 a global pandemic. While some countries adopted a herd immunity approach, others imposed stricter measures to reduce the transmission of the virus. Hospitals in some countries faced an avalanche of extremely sick admissions, whereas others experienced an early surge in cases or were able to control the spread. DESIGN: Discursive paper. METHODS: A web-based survey was e-mailed to 63 INCFCC members from 28 March to 30 April 2022, as an invitation to share their experience concerning the long-term impact of COVID-19 on their role as a nurse educator, clinician or researcher. RESULTS: Sixteen members responded, and the responses were grouped under the themes stress and anxiety, safe staffing and pay, doing things differently, impact on research, impact on teaching and learning, impact on clinical practice, nursing made visible and lessons for the future. CONCLUSION: The INCFCC members provided their views and highlighted the impact on their role in nursing education, administration, research and/or practice. This discussion of international perspectives on the similarities and differences imposed by COVID-19 found that the impact was wide-ranging and prolonged. The overarching theme revealed the resilience of the participating members in the face of COVID-19. RELEVANCE TO CLINICAL PRACTICE: This study highlights the importance of all areas of nursing, be it in academia or in clinical practice, to work together to learn from the present and to plan for the future. Future work should focus on supporting organizational and personal resiliency and effective interventions to support the nursing workforce both during a disaster and in the recovery phase. Nursing workforce resilience in the face of COVID-19.

Experiences and Perspectives of Children and Young People Living with Childhood-Onset Systemic Lupus Erythematosus-An Integrative Review.

Childhood-onset systemic lupus erythematosus (cSLE) impacts the daily life of children and young people. This study aimed to describe the experiences and perspectives of children and young people living with cSLE. An integrative review guided by Whittemore and Knafl was conducted. Extant empirical research published in peer-reviewed journals from 2000 to 2021 on children's self-reported experiences living with cSLE was identified from Scopus, CINAHL, Medline via PubMed, and PsycINFO via Ovid databases. Nineteen studies involving over 1400 participants were included. Four themes and fourteen sub-themes were identified: (1) challenging symptoms (disruptions to life and altered self, severity, fatigue, depression, and anxiety), (2) medicines and side effects (dreaded steroids, conflicting feelings, and medication adherence), (3) complicated life (school sports and social, giving things up, lack of understanding, and quality of life) and (4) ways of coping (family and friends, relationships with health providers, and maintaining positivity). While cSLE shares many similarities with adult-onset SLE, awareness of differences in experiences and perceptions of children and young people is crucial. The significant psychological and social impact of the disease and its treatments necessitates a comprehensive, holistic approach to managing cSLE that considers the unique needs of youth.

The Burden of Self-Reported Antibiotic Allergies in Health Care and How to Address It: A Systematic Review of the Evidence.

BACKGROUND: Antibiotics are the first-line treatment for bacterial infections; however, overuse and inappropriate prescribing have made antibiotics less effective with increased antimicrobial resistance. Unconfirmed reported antibiotic allergy labels create a significant barrier to optimal antimicrobial stewardship in health care, with clinical and economic implications. OBJECTIVE: A systematic review was conducted to summarize the impact of patient-reported antibiotic allergy on clinical outcomes and various strategies that have been employed to effectively assess and remove these allergy labels, improving patient care. METHODS: The review was undertaken using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. A critical appraisal was conducted on all studies and a narrative synthesis was performed to identify themes. RESULTS: Four themes emerged: the prevalence of antibiotic allergy, impact of antibiotic allergy on antimicrobial prescribing, impact of antibiotic allergy on clinical outcomes, and delabeling strategies to improve clinical outcomes. Of the 32 studies, including 1,089,675 participants, the prevalence of reported antibiotic allergy was between 5% and 35%. Patients with a reported antibiotic allergy had poorer concordance with prescribing guidelines in 30% to 60% of cases, with a higher use of alternatives such as quinolone, tetracycline, macrolide, lincosamide, and carbapenem and lower use of beta-lactam antibiotics. Antibiotic allergy delabeling was identified as an intervention and recommendation to advance the state of the science. CONCLUSIONS: There is substantial evidence within the literature that antibiotic allergy labels significantly impact patient clinical outcomes and a consensus that systematic assessment of reported antibiotic allergies, commonly referred to as delabeling, improves the clinical management of patients.

Fathers' Experiences of Caring for a Child with a Chronic Illness: A Systematic Review.

The prevalence of children living with chronic health conditions is increasing worldwide and can disrupt family roles, relationships, function, and parental involvement in family caregiving. The purpose of this systematic review was to explore fathers' experiences and involvement in caring for a child with a chronic condition. Systematic searches using seven databases were conducted. Study criteria included (1) peer-reviewed original research in English, Spanish, French, or Portuguese, (2) children less than 19 years of age with a chronic condition, (3) fathers (biological or guardian) as direct informants, and (4) outcomes addressing fathers' experience, perceptions, and/or involvement in the child's care. Data were synthesized from ten articles reflecting eight separate studies that utilized quantitative designs. Three areas of focus were identified: Family Functioning, Father's Psychological Health, and Need for Support. Data suggested increased involvement from the father in caring for their child with a chronic condition was associated with improved family functioning, increased anxiety and distress, decreased self-esteem, and increased need for support. This review revealed a paucity of data regarding fathers' experiences and involvement when caring for a child with a chronic condition, with that available primarily from developed countries. Rigorous empirical studies are needed to deepen understanding of how fathers are involved in the care of their child with a chronic condition.

Children and young people's participation in decision-making within healthcare organisations in New Zealand: An integrative review.

There is a paucity of literature on children and young people's participation in decision-making within healthcare organisations in New Zealand. This integrative review examined child self-reported peer-reviewed manuscripts and published guidelines, policy, reviews, expert opinion and legislation to explore how New Zealand children and young people participate in discussions and decision-making processes within healthcare settings and what are barriers and benefits to such participation. Four child self-reported peer-reviewed manuscripts and twelve expert opinion documents were retrieved from four electronic databases including academic, government and institutional websites. Inductive content thematic analysis generated one theme (a discourse in children and young people's participation within healthcare settings), four sub-themes, 11 categories, 93 codes and 202 findings. It is evident within this review that there is a discourse between what expert opinion are stating is required to promote children and young people's participation in discussions and decision-making processes within healthcare settings and what is occurring in practice. Despite literature reporting on how children and young people's participation and voice were essential for healthcare provision, there was sparse literature published on children and young people's participation in discussions and decision-making processes in healthcare delivery in New Zealand.

Children's voices on their participation and best interests during a hospital stay in Australia.

PURPOSE: To explore school-aged children's experiences about their best interests and participation in care during a hospital admission. DESIGN AND METHODS: A descriptive qualitative design involving in-depth, iterative inductive review of child responses to generate key words that led to identification of categories and themes. The study was guided by the United Nations Convention on the Rights of the Child's definition of the best interests of the child, Bronfenbrenner's bioecological model and a child centred care approach. RESULTS: Nine school-aged children (5-15 years old) from one children's ward in Australia participated. Analysis yielded thirteen categories, six sub-themes, and three themes: 1) Relationships with parents were positive when they met their children's physical and emotional needs and advocated for them; 2) Relationships with staff were positive when staff created opportunities for children to have a say in their healthcare, and checked in on the children and 3) Seeking familiarity away from home was facilitated when the environment children found themselves in provided them their own space and various forms of entertainment. CONCLUSION: School-aged children were able to verbalize what their best interests were and how participation in care could be facilitated in the hospital setting. The inter-relationships of the children with their parents, healthcare professionals, and the immediate environment reflected interactions both within, and between systems. RESEARCH AND PRACTICE IMPLICATIONS: Children in hospital need to be provided with age-appropriate opportunities to participate in shared decision making to support their best interests. Studies that model and evaluate such opportunities are needed.

Parents' experiences of children with a rare disease attending a mainstream school: Australia.

PURPOSE: To explore the perceptions of parents who had a child or adolescent (6-18 years) diagnosed with a rare disease who attended a mainstream school in Western Australia. DESIGN AND METHODS: A cross-sectional online survey was conducted with 41 parents of children with a rare disease. Here we report the findings of 14 open-ended questions on their experience of illness-related factors and impact on school-related social activities, such as sports, school camps and leadership roles whilst their child with a rare disease attended a mainstream school in Australia. Responses were analysed using an inductive thematic content approach. RESULTS: We identified three themes (resources, experiences and needs), seven categories (illness, support, knowledge, acceptance, isolation, activities of daily living and adjunctive therapy) and 24 codes from the parents' responses describing the experiences of their child at school. Parents want the government and educational systems to provide the necessary funding and resources to reflect an inclusive curricula and supportive environment that can meet the learning needs of children with a rare disease at a mainstream school. CONCLUSIONS: Further research, policy development and interventions are needed to explore how schools can meet the diverse psychosocial physical and emotional needs of children diagnosed with a rare disease who attend a mainstream school in Australia. PRACTICE IMPLICATIONS: A child needs to be viewed from a holistic ecological viewpoint; future research with larger representative samples to explore rare disease experiences and a critical review of existing legislation, interventions and initiatives is required.

Position Statement of the International Network for Child and Family Centered Care: Child and Family Centred Care during the COVID19 Pandemic.

It is the position of the International Network for Child and Family Centered Care (INCFCC) that COVID19 restrictions pose tremendous challenges for the health care team in their efforts to provide child and family centered care (CFCC). COVID-19 restrictions impact on the family's right to be presernt with their ill child and to contribute to the caring process. A limited number of articles have discussed challenges about the successful delivery of CFCC during the COVID-19 pandemic. Based on current literature, the INCFCC stresses the need for continuous facilitation implementation of child and family centred care as, it is essential for children's physical and psychological wellbeing. Furthermore we believe that the families' presence and participation holds more benefits than risks to the health of children, their families, and the health care team.

A Scoping Review of Nursing Research Priorities in Pediatric Care.

PROBLEM: Priority setting for pediatric nursing is important to plan, coordinate and direct future research. The aim of this scoping review was to systematically identify and synthesise the nature, range and extent of published pediatric nursing research priorities. ELIGIBILITY CRITERIA: English language full text publications focusing generic nursing research priorities for the child or adolescent, indexed in CINAHL, EMBASE, The Cochrane Database of Systematic Reviews, AMED, MEDLINE and PsycINFO and published from 2008 to 2019. SAMPLE: A total of 789 citations were identified, 44 full text articles were retrieved and assessed for eligibility and eight studies were finally reviewed, quality assessed (CREDES) and synthesised. RESULTS: All eight studies used a consensus building method to identify research priorities reported by nurses. Six used Delphi technique, one Nominal Group Technique (NGT) and one consensus workshop. CREDES score range was 10-14 of a possible 16. Synthesis of the 234 nursing research priorities generated four themes; evidenced-based practice, pediatric context, child and family-centered care; pediatric nursing, with 14 subthemes. CONCLUSION: The nursing research priorities reported appear to be still current and important to nurses. There was a focus on acute care, with fewer priorities reflecting areas of child-, school-, or mental- health. Consumer and community priorities have not been reported. IMPLICATIONS: These nursing research priorities can be used to inform the national or local research agenda, although there is a need to establish priorities from the perspective of all stakeholders and in particular, identify what is important to consumers.

Bridging the Child and Family Centered Care Gap: Therapeutic Conversations with Children and Families.

Professor Linda Shields and Dr Mandie Foster from Charles Sturt University and Edith Cowan University in Australia discuss several models of care for children and families that exist and the prospect of using conversations with children and families as an intervention within healthcare to facilitate a child and family centered care approach.