Craniosynostosis occurs when one or more cranial sutures fuse prematurely and can present complex medical, psychosocial, and caregiving challenges for affected families. Prior research documents parents' experiences of navigating diagnosis and treatment, highlighting value in connecting with other families to share insights and support. However, little is known about specific practical and emotional guidance that parents themselves would offer to others facing similar circumstances. To address this gap, we used reflexive thematic analysis to examine pre-existing qualitative interview data from 22 parents. Six themes were generated: Stay Informed and Make Informed Decisions; Prepare for the Journey: Practically and Emotionally; Build a Support Network; Advocate with Confidence; Care for Yourself Along the Way; and Find Strength in Positivity and Growth. Findings identify condition-specific, actionable advice that complements clinical guidance. They point to persistent gaps in routine care, including both practical information and psychosocial support, and show how peer insight reduces uncertainty. Embedding parent advice in family-centred care from the outset, via structured resources and facilitated peer support, can deliver timely, experience-based guidance for decision-making, preparation, advocacy, and self-care. This, in turn, strengthens parents' confidence and resilience across their craniosynostosis journey.
The Western Australian paediatric ESCALATION system, integrating family involvement, promotes early recognition and response to a hospitalised child's deteriorating health. This study aimed to understand healthcare professionals' experiences of Aboriginal parent/carer involvement in detecting clinical deterioration in the hospital. This interpretive descriptive study is stage one of a multisite three-staged pre-post intervention study guided by the Practical, Robust Implementation, and Sustainability Model (PRISM). Healthcare professionals (nurses and doctors) from three hospitals involved with the care of Aboriginal children were invited to participate in focus groups or interviews. Seventy-two healthcare professionals participated, with recordings transcribed and analysed using reflexive thematic analysis. Four themes mapped to the PRISM framework described their experiences: Interpreting family concern (Organisational Characteristic/Perspective), Building a relationship (Implementation & Sustainability Infrastructure), Recognising communication barriers (Implementation & Sustainability Infrastructure), and Culturally secure care is a shared responsibility (External Environment). Findings highlighted that healthcare professionals valued Aboriginal families' role in recognising deterioration. Effective Aboriginal family involvement in the ESCALATION system relies on strong healthcare professional and family relationships, Aboriginal Liaison Officer support, and cultural awareness with appropriate communication. Findings will inform tailored solutions to strengthen Aboriginal family engagement in escalating care.
Nurses caring for children hospitalised with a serious illness are optimally placed to advocate for truthful health information. This study explored the phenomenon of truth-telling as experienced and perceived by nurses caring for seriously ill children when parents are contemplating a non-disclosure directive. Data were collected through semi-structured interviews and analysed using Interpretative Phenomenological Analysis (IPA). The thematic analysis identified four themes, including, Child’s absence from the health communication conversation, Child and family’s access to health information, Assessment of the child and family’s understanding for the purpose of communicating health information and Nurse communication after physician communication. Despite access to online medical information and the provision of diagnostic results directly to patients, nurses continue to employ self-regulation strategies, upholding traditional practices of disclosure, before employing a supportive role for parents and children. Nurses’ partnership with the child and family can support the implementation of policies and practices allowing participation and shared clinical decision-making through open and honest communication, ultimately contributing to positive care outcomes.
Health Play Specialists (HPSs) play an important role in supporting children and young people's emotional wellbeing in healthcare, yet their contribution remains poorly understood and is inconsistently recognised within paediatric multidisciplinary teams (MDTs). This study examined how HPSs and MDT members understand a HPS's role and work. An online qualitative survey, distributed via professional networks and social media across the UK, was completed by 101 professionals (56 HPSs and 45 MDT members). Data were analysed using inductive qualitative content analysis. Participants shared recognition of the HPS's impact, particularly through play, emotional support, and distraction but differed in their appreciation of the role's scope and complexity. Four key themes were identified: role understanding, impacts, enabling factors and barriers to the HPS role. Participants identified a need for greater MDT integration and standardised education on the HPS's role across health professional training. Whilst the findings demonstrate an understanding of a HPS's role and work, there is a need for increased recognition of wider aspects of their role beyond play and distraction to procedural preparation, therapeutic and normalising play, post-procedural support, advocating for children and families, and delivering education to other members of the MDT.
This qualitative study was conducted to determine feelings of nurses caring for children affected by earthquake, and their efforts to manage the disaster using a phenomenological approach. Data were collected through one-on-one in-depth interviews and audio recordings. The data obtained from audio recordings were evaluated using qualitative content analysis method. As a result of the analysis, two main and seven sub-themes were created as Emotional Responses (Anxiety, Fear, and Helplessness), Inadequacy in Disaster Management (Inability to reach children and families, Inability to meet the needs of children and families, Inability to create safe areas, Inadequacy of knowledge and skills). These research findings have demonstrated the importance and necessity of providing psychosocial support to nurses caring for children affected by disasters, given the psychological problems they experience. At the same time, it is necessary to develop preventive strategies regarding negative situations related to the management of children in disaster.
This study's objective was to develop a taxonomy of family-centered vocabulary for counseling about pediatric invasive home mechanical ventilation. We analyzed interviews with 38 families who faced decisions about home ventilation by creating, indexing, and organizing a limited data set of excerpts with technology vocabulary. We quantified frequencies and proportions of parent vocabulary used to describe technology and analyzed excerpts for focus (child's vs family's experience) and affective valence. We identified 2299 excerpts referencing medical technology; most described tracheostomies and/or ventilators. Parent vocabulary was consistent with medical jargon instead of lay language. Excerpts were nearly twice as often focused on family (vs child) technology experience. Over half (255/427, 60%) of excerpts with emotional valence were negative, especially regarding family experience of time commitment, adapting homes, and finances. Results demonstrate that parent language about medical technology typically mirrors that of clinicians. Language focus is most frequently about technology impact on the family rather than the child which is counter to most clinician counseling which emphasizes child experience. Emotion associated with family experience was often negative, especially regarding logistical and financial impact. Actionable and balanced language is suggested for healthcare teams working in this space.
Children living with chronic complex conditions(CCC)face challenges that affect their daily lives, often negatively impacting their perception of life, health, and overall well-being. A person-centered approach by healthcare professionals can facilitate better support tailored to each child's individual needs. This approach can be applied both digitally and in person within healthcare settings; however, there is limited knowledge regarding the type of support children prefer. This study aims to describe how children with complex chronic conditions (CCC) experience digital and in-person support, their information needs, and their perceived participation in their own healthcare. Twelve children aged 10 to 17 years were individually interviewed, using a qualitative descriptive method. The data were analyzed with manifest content analysis, where two categories were identified: "Support and involvement in one's own healthcare" and "Receiving information in different ways." Findings indicate that children with CCC require personalized information and support addressing their specific needs, incorporating both professional and peer-to-peer support. This study highlights a person-centered care in healthcare, which enhances children's rights and encourages their active participation in their own care.
This study aimed to assess how paediatric cystic fibrosis (CF) patients attending an Australian tertiary paediatric hospital accepted and perceived the 'Captains on Call' (CoC) program, a positive distraction initiative by Starlight Children's Foundation Australia (Starlight). We invited caregivers of CF clinic attendees and CF patients aged eight and over to participate in an online survey, and healthcare professionals and Starlight team members involved in CoC to participate in an interview. Eighteen caregivers and ten children completed the survey, while three health professionals and four Starlight team members were interviewed. Findings indicate that CoC positively disrupts healthcare experiences for families, reduces anxiety and fear before and during hospital visits, averts negative rumination for caregivers and improves healthcare professionals' mood during visits. While participants shared their appreciation of CoC interactions being tailored to each child's interests, suggestions were made for better addressing adolescents' unique needs. Overall, CoC emerged as a highly valued program in the CF clinic at Women's and Children's Hospital, Adelaide, demonstrating potential to foster more positive healthcare experiences through play and positive distraction, mitigating the perceived negative impact of hospital visits for children with CF and their caregivers.
Culturally and Linguistically Diverse (CALD) communities, including children, can face a multitude of barriers when accessing health services. With increased availability of paediatric allied health telehealth services in recent years, uptake of these services by children and their families from CALD communities is not well understood. The aim of this study was to describe the demographic characteristic of families from CALD and non-CALD backgrounds seeking speech pathology or occupational therapy services for their children, determine if telehealth uptake differs between families from CALD and non-CALD backgrounds and between families across different language groups, and identify factors influencing telehealth uptake. Although, rate of telehealth uptake was significantly lower for families of clients from CALD communities, neither CALD status nor language independently influenced uptake of telehealth when a broader range of factors were considered. Contrary to expectations, speech pathology clients were less likely to uptake telehealth services compared to occupational therapy clients. Additionally, where families of clients lived rather than CALD background per se impacted likelihood to uptake telehealth. To ensure equitable access to services for all children and their families, health services need to be mindful of the multiple factors influencing uptake of allied health telehealth services.
Child healthcare (CHC) nurses play a crucial role in supporting children and families from early life. This study describes CHC nurses' experiences of health promotion in Child health service (CHS), focussing on how they develop and apply their competence. Fourteen nurses from five CHC centres were interviewed, and the data were analysed using qualitative content analysis. One overarching theme emerged: tuning in and adapting support for the family in the child's best interests - supported by three categories: finding opportunities to promote health, growing in one's work, and organisational support. The findings emphasise CHC nurses recognising their own competence and using learning processes, such as work-integrated learning, to achieve healthier outcomes for children. Continuous professional learning also enables nurses to cope with the challenges of an evolving healthcare environment.
Parental presence during pediatric resuscitation presents a complex challenge, often provoking mixed reactions from healthcare providers and families. This qualitative study explored how decisions about parental presence emerge from the experiences and perceptions of resuscitation teams and parents. An exploratory descriptive design was used across three pediatric hospitals. Data collection involved semi-structured interviews with 33 resuscitation team members and 20 parents who witnessed their child's resuscitation. Thematic analysis identified patterns for participant accounts. Participants shared their experiences and perceptions regarding decision-making about parental presence during pediatric resuscitation. Two main themes emerged: (1) Double-edged sword of parental presence (reluctance to allow parental presence; permission for parental presence) and (2) emotional weight of parents' decision to be present (decision to be present; indecision regarding presence). Findings highlight that parental presence involves balancing team readiness, environmental factors, and parental emotional state. Institutional policies should support offering presence as an option, reinforced by staff training and structured pre-briefing and debriefing to promote shared decision-making and strengthen family-centered care.
Pediatric transitions significantly impact continuity of care and the well-being of children and their families. Poorly managed transitions may lead to hospital readmissions, medication errors, and caregiver distress, highlighting a critical need for evidence-based improvements. This scoping review identifies key challenges in pediatric hospital-to-home transitions, maps existing literature gaps, and proposes research priorities with actionable strategies for improvement. We analyzed studies on transition difficulties, intervention effectiveness, and the role of emerging technologies such as telemedicine. The review also explored caregiver perspectives and experiences, which are critical for successful transitions. Key challenges include suboptimal treatment adherence, inadequate caregiver understanding of discharge instructions, and unequal access to follow-up care. Despite recent progress, significant gaps remain in effectively implementing solutions across diverse populations and socioeconomic contexts. Research priorities involve integrating telemedicine into transition protocols, improving caregiver education, and ensuring equitable access to post-discharge resources. Addressing these challenges requires adaptable, evidence-based interventions to improve care transitions. Prioritizing these efforts can achieve safer and more effective pediatric hospital-to-home transitions, ultimately improving outcomes for children and their families.
There is limited literature on nurse leaders’ perceptions of organisational policies, guidelines, and practices that enact children and young people’s (CYP) involvement in hospitals. Nurse leaders within what were the four District Health Board providers of children’s tertiary health services in New Zealand (Auckland, Counties Manukau, Wellington, and Canterbury) were invited to respond to an online survey during November 2022 through to January 2023. The survey was developed by the researchers in accordance with the literature and included 11 open-ended questions. The open-ended questions were analysed iteratively through inductive thematic analysis. Eight out of 24 invited nurse leaders responded to the survey. Thematic analysis of the findings resulted in four key themes that highlighted how nurse leaders perceived their organisations provided a platform for children and young people’s involvement in hospital: Policy and Guidelines; Diversity, Equity, and Inclusion; Models of Care; and CYP’s Voices. Nurse leaders described various means and methods utilised to enact CYP’s participation within paediatric settings in New Zealand. A multi-tiered collaborative approach with government, industry, leaders, healthcare professionals, family and CYP is required to enhance CYP’s agency/voice in New Zealand hospitals as in alignment with the United Nation Convention of the Rights of the Child.
This descriptive cross-sectional study investigated the demographic profile of surveyed Australian neonatal nurses, explored their self-reported professional quality of life status, and appraised the strength and direction of relationships between these variables. Australian College of Neonatal Nurses (ACNN) general members ( N = 950) were invited to participate. An online Qualtrics TM survey was distributed via email. Compassion satisfaction (CS) and fatigue (CF) scores were measured using the Modified Professional Quality of Life Scale (ProQOL-21]). Spearman’s correlation calculated the strength and direction of relationships between variables. Fifty-three neonatal nurses responded to the survey ( N = 950, response rate = 5.58%). Respondents reported moderate to high-level compassion satisfaction and high-level compassion fatigue. Nurses in clinical roles revealed higher compassion fatigue scores than those in non-clinical roles. A statistically significant positive correlation was detected between years of experience in neonatal care and compassion satisfaction (r = 0.277, 95% CI [0.002, 0.513]). These findings question the belief that education and experience safeguard against work-related stress and emphasise that strategies to offset the fatigue reported by this female-dominated workforce are needed.
Navigating through a child's cancer treatment journey is challenging for a family. Understanding family members' experiences helps identify their needs and how they can be supported during a child's cancer treatment. This study aimed to explore parents' perceptions of how their child's cancer treatment impacts family members' well-being and family dynamics. Semi-structured interviews with parents of children diagnosed with cancer (N = 18) were conducted to explore parental perceptions of family members' experiences. Data were analysed using reflexive thematic analysis. Four themes were generated: disruption to daily life and relationships, impact on siblings, parents' emotional and psychological impact and role changes, and navigating separation and family dynamics during treatment. This study provides important contributions to a broader understanding of how family members are affected, from a parental perspective, during childhood cancer treatment in the UK. Enforced separation of family units during hospital stay has an impact on family dynamics and family members' well-being. This study highlights parents' need for support and important considerations for healthcare professionals implementing family-based support during paediatric cancer treatment.
Children with cerebral palsy (CP) and their families face a wide range of healthcare services. Evidence suggests that this care should be family-centered (FCC). The purpose of this systematic review and meta-analysis was to gather the existing evidence about the experience of children with CP, families, and professionals with FCC through the Measure of Processes of Care (MPOC) and analyze the different perspectives in the population groups, determining which aspects of this model are more entrenched and which need special attention to improve. A search of the peer-reviewed literature in five databases was conducted. The included studies were assessed using the relevant Joanna Briggs Institute tool and a meta-analysis was performed. Fifteen articles were included, in which any version of the MPOC was used for both families and professionals. However, no article reporting the experience of children was found. The domains related to "Information provided" were the lowest rated by families and professionals, so special attention should be paid to this. The highest average score was for "Respectful care," both families and professionals agree that the treatment provided is characterized by respect and dignity. Recommendations are provided to start collecting this kind of information for children with CP.
Advancements in life-sustaining technologies have extended the lives of children with medical complexities, increasing demand for substantial healthcare services. Caring for these children requires significant caregiver time and energy, affecting their well-being. These experiences highlight a critical need for psychosocial interventions-like legacy-building-to foster adaptive coping, facilitate meaning making, and optimize outcomes for this population. This study explores how parents/caregivers of medically complex children perceive and experience the concept of legacy. Thirty-one parents/caregivers participated in semi-structured interviews, which were analyzed using inductive coding. Three themes emerged: (1) legacy is both what you leave behind and what you live right now, (2) legacy inspires change, and (3) legacy is shaped by healthcare experiences. Findings highlight the need for inclusive, adaptable legacy-building practices that address families' unique needs and enhance psychosocial support for this population.
This study examined the lived experiences of adolescents and young adults (AYA) with chronic illnesses at a safety net hospital, with nearly 90% identifying as ethnically and racially minoritized. Interviews were conducted with patients (N = 19) aged 16–20 years old, who are living with at least one chronic illness. Interviews were coded and analyzed using thematic analysis. Four themes captured the impact of illness and resilience processes: (1) My Condition Affects My Body , (2) My Condition Restricts My Life , (3) My Condition Impacts My Emotional Well-Being , and (4) I Can Still Be Healthy . Themes were verified through a Community Advisory Board of AYA with chronic illness. Participants described how symptoms, side effects, and restrictions negatively impact their physical and emotional well-being. Despite challenges, AYA demonstrated resilience through individualized, trial-and-error coping strategies that buffered illness-related distress. These findings underscore the importance of culturally responsive, developmentally appropriate interventions to support the well-being of minoritized AYA with chronic illness.
The aim of this scoping review was to identify and map available evidence on cultural adaptation elements incorporated into child health knowledge translation (KT) tools for parents. A search of eight databases was conducted (2001-2024). Two reviewers worked independently for screening, study selection, and data extraction. Extracted data included number and type of cultural adaptations, and approach taken to performing cultural adaptation. Studies were then categorized and mapped by these attributes, and sub-categories emerged based on patterns of occurrence between included studies. Of 3946 unique articles, 20 met the inclusion criteria. Three main types of cultural adaptation elements were described: (a) language, (b) visual representations, and (c) cultural values. The most common child health conditions of included studies were autism spectrum disorder (ASD), attention-deficit hyperactivity disorder (ADHD), and asthma. Further exploration of cultural values and their inclusion in KT tools is needed to meet the information needs of culturally and linguistically diverse (CALD) families. The findings from this review underscore the necessity for further research to explore cultural adaptation processes required to develop child health KT tools to assist clinicians and provide more targeted, culturally relevant support for CALD parents.
