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Anteayer Journal of Advanced Nursing

Discovering the Self: A Grounded Theory of Women's Recovery From Gender‐Based Religious Harm

ABSTRACT

Aim(s)

This study defines adverse religious experiences (AREs), describes how these gendered harms affect women and develops a Classical Grounded Theory (CGT) model of women's recovery and inform trauma- and gender-responsive nursing practice.

Design

Using the CGT design, the study explores women's lived experiences with AREs, focusing on their primary concern and the strategies they used to address it.

Methods

Fifteen North American women participated in open-ended, semi-structured interviews conducted between May and June 2023. Data collection and analysis occurred concurrently by using constant comparison. Theoretical saturation was reached by approximately 12 interviews and was confirmed through three additional interviews. Theoretical coding was guided by Glaser's Six Cs.

Results

The central issue was Loss of Self, with limited agency, embodiment and autonomy due to internalised religious control. This study conceptualises AREs as a gendered determinant of health and introduces a nursing-generated explanatory model of women's recovery from religious harm. The Basic Social Process, Discovering Self, includes six cyclical phases: Living with Toxicity, Loss of Self, Recognizing Woundedness, Leaving Negativity, Seeking Restoration and Awakening to Wholeness. Analytic integration with the Six Cs showed that doctrinal rigidity, gendered hierarchies, conditional belonging, turning points and psychological, spiritual and relational consequences shaped individual recovery paths. Recovery proved a nonlinear, whole-person process spanning spiritual, physical, sexual and relational domains.

Conclusion

Discovering Self offers the first explanatory model of women's recovery from religious harm, identifying mechanisms of oppression and pathways for reclaiming agency, embodiment and voice.

Impact

This study provides a roadmap for trauma- and gender-responsive nursing care, education and policy. The findings align with global priorities in health and gender equality.

Reporting Method

This study followed the SRQR guidelines and used CGT methodology.

Patient or Public Contribution

Patients or the public were not involved in the study.

Virtual Nursing in Residential Aged Care: What Is Known? A Rapid Review

ABSTRACT

Aims

To review current evidence on the implementation and impact of virtual nursing care in long-term aged care.

Design

An integrative rapid literature review.

Data Sources

Medline, CINAHL, Web of Science, Embase, Ageline and Scopus.

Review Methods

The review included studies involving virtual care interventions provided by nurses (or by a multidisciplinary team including nurses) to older people in residential aged care that reported health outcomes or stakeholder experiences. Consistent with PRISMA guidelines, databases were systematically searched in July and August 2024, focusing on literature published since 2014. Studies were screened in Covidence by three team members, with conflicts resolved by additional reviewers. Studies not involving nurses or not set in aged care were excluded.

Results

The search identified 13 studies, which included quantitative, qualitative and mixed-method approaches, conducted in both Australian and international settings, as well as in rural and metropolitan locations. Nurses were often involved as part of an existing virtual care programme, typically located in a hospital setting. The training and credentials of nurses delivering VN varied in terms of specialisation and advanced practice. The model of care in general was ad hoc, though in some cases there were regular, scheduled VN consultations. The time requirements for onsite staff and nurses were not well articulated in any of the studies, and information on the funding models used was also lacking.

Conclusion

There is some evidence that VN interventions in aged care may improve communication, enhance person-centred care and reduce emergency department presentations and hospitalisations.

Impact, Patient or Public Contribution

Rigorous, ongoing evaluation of VN interventions is required to ensure their appropriate application in residential aged care.

A Conceptual Analysis of Psychological Burnout Among Nurses Providing Terminal Care

ABSTRACT

Aim

To analyse the concept of psychological burnout among nurses in the context of terminal care.

Design

Concept analysis.

Methods

The study was conducted according to the eightstep conceptual analysis procedure suggested by Walker and Avant.

Data Sources

Articles published in English or Korean between January 2014 and 2024 were reviewed in March 2024. A total of eight search engines were used for the literature review, including PubMed, Cumulative Index of Nursing and Allied Health Literature (CINAHL) and PsycINFO. A total of 19 articles were finally selected for the analysis based on criteria.

Results

The attributes of psychological burnout among nurses providing terminal care are depletion of energy, emotional numbness, disengagement, sense of powerlessness and emotional repression. Seven antecedents and six consequences of the concept were identified in this study.

Conclusion

The result of this study provides a foundation for the development of tailored interventions and further research related to the occurrence of psychological burnout among nurses providing terminal care. Additionally, considering the characteristics of terminal care, we suggest additional studies to confirm the attributes of burnout in this context across various cultural and religious backgrounds.

Implication for the Profession and/or Patient Care

This study helps clarify the concept of psychological burnout among nurses in terminal care and informs the development of various interventions, educational programmes and related policies.

Patient or Public Contribution

No patients or public contribution.

Weight Bias Interventions for Healthcare Professionals: An Integrative Review

ABSTRACT

Aim

To describe interventions to mitigate weight bias among practicing healthcare providers and examine their effectiveness.

Design

An integrative review.

Methods

The framework of Whittemore and Knafl (2005) was utilised to identify and synthesise studies of weight bias interventions. Covidence reference management software facilitated screening using predetermined eligibility criteria that is, published in peer-reviewed journals, reported in English, and described outcomes for weight bias mitigation interventions among healthcare providers with a professional practice licence. We evaluated study quality using Joanna Briggs Institute's Critical Appraisal Tools for qualitative and quantitative studies.

Data Sources

Five databases were searched (CINAHL, Embase, EBSCOhost, APA PsycINFO, and Scopus) in July 2024.

Results

Sixteen articles met the inclusion criteria. Four themes emerged: (1) active learning lessens weight bias more than passive learning, (2) multicomponent approaches yield better outcomes, (3) healthcare providers are willing to change their practices, and (4) explicit attitudes and beliefs are more amenable to change than implicit ones. Four sub-themes within theme one included the use of in-person workgroups; films, computer-based, and podcast delivery; written modules; and physical characteristic modifications, such as the use of an adiposity empathy suit. Intervention designs using a theory-based, active learning approach with repeated sessions were most successful at decreasing negative weight-biased attitudes and beliefs.

Conclusions

Interventions that effectively reduce weight bias among practicing healthcare providers vary, yet evidence suggests that weight bias mitigation is achievable. These interventions offer strategies to improve patient-centred care among patients living with obesity.

Impact

Healthcare providers often display weight bias. This review synthesises information on effective interventions for reducing bias, which may limit the subsequent negative patient outcomes associated with it.

Reporting Method

The Preferred Reporting Items for Systematic Reviews and Meta-Analyses was the structure used for this paper.

Patient or Public Contribution

There were no patient or public contributions.

Becoming, Being and Building: A Qualitative Descriptive Study of the Experiences of Clinical Research Nurses

ABSTRACT

Aim

To explore the experience and practices of clinical research nurses in Victoria, Australia.

Design

Qualitative descriptive design with reflexive thematic analysis.

Methodology

Semi-structured interviews were conducted with ten clinical research nurses between October and December 2023 in Victoria, Australia.

Results

Three phases (overarching themes) were generated: (1) Becoming a clinical research nurse, occurred by chance with a stressful and unsupportive transition period; (2) Being a clinical research nurse, was described as an ongoing development of confidence, specialised skills and knowledge; and (3) Building a clinical research nurse role, was described as challenging due to limited educational and career opportunities.

Conclusion

Clinical research nurses experienced a limited number of clear educational and career pathways that they could use to plan and grow in the nursing profession.

Implications for the Profession and/or Patient Care

Addressing support and career development needs may ease clinical research nurses' transition and improve career planning.

Impact

This study addresses a gap by highlighting the limited structured career pathways, formal mentorship and ongoing educational planning for clinical research nurses. Findings illustrate that clinical research nurses often begin unprepared, gradually develop confidence and skills, but continue to struggle with unclear career development plans. The findings can inform nursing leadership, educators and policymakers to better support clinical research nurses.

Reporting Method

The Consolidated Criteria for Reporting Qualitative Research Checklist (COREQ).

Patient or Public Contribution

No patient or public contribution.

Obstacles and Aspirations for Improving Delivery of Cardiopulmonary Resuscitation to Wheelchair Users: A Qualitative Study

ABSTRACT

Aim

To describe obstacles and ideas for improvement for the delivery of cardiopulmonary resuscitation and basic life support to wheelchair users.

Design

A descriptive qualitative study underpinned by constructivism was conducted.

Methods

Semi structured interviews were completed with 26 participants from three cohorts: formal and informal carers, wheelchair users and healthcare professionals. Data were collected via online and in person interviews between February and June 2024. All participants were located in Australia, with the exception of one who was located in the United Kingdom. Data were analysed using thematic analysis.

Results

Two major themes were identified: (1) obstacles to providing cardiopulmonary resuscitation and basic life support to a wheelchair user and (2) aspirations for improving cardiopulmonary resuscitation and basic life support for wheelchair users.

Conclusion

Participants shared ideas for how to improve emergency care for wheelchair users, highlighting a need for further research, testing and development of an education intervention.

Implications for the Profession and/or Patient Care

Improving knowledge about providing emergency care to a wheelchair user could improve outcomes, save lives and reduce the life expectancy gap experienced by people with disability.

Impact

Approximately 2% of the global population use a wheelchair. Wheelchair use complicates the delivery of cardiopulmonary resuscitation and basic life support. There are currently no guidelines informing emergency care for wheelchair users available globally. Recognition of common symptoms of distress exhibited by wheelchair users, and options for the delivery of practical emergency care are required for wheelchair users.

Reporting Method

The paper adheres to the EQUATOR reporting guidelines utilising the SRQR checklist.

Patient or Public Contribution

Patients and the public were the driving force in recognising the gap in knowledge regarding the delivery of CPR to wheelchair users. Questions from patients and the public shaped the aims and methodological choices for this study.

The Decision to Leave the Midwifery Workforce in the United States: A Qualitative Investigation

ABSTRACT

Aim

To explore the experiences of and reasons for midwives leaving practice.

Design

A qualitative approach applying a social constructivism interpretative framework.

Methods

Twenty participants were selected for interviews based on reasons for leaving midwifery practice between October 2022 and April 2023. Thematic analysis was used to identify themes, and results were checked for trustworthiness through a third coder, community engagement and member checking with two participants.

Findings

One overarching theme with six subthemes characterised the experience of leaving midwifery practice. All participants reported the overarching theme: Caring for myself and my close community became incompatible with the work of midwifery. Five subthemes reflected negative aspects of midwifery work: value incongruence; racism in midwifery; not feeling respected/valued (+compensation); high workload leading to low quality of care; negative practice climate and psychosocial safety climate. The theme of strong professional commitment and identity weighed into their decision to leave. Negative experiences working in birth centres were prominent across themes.

Conclusions

Participants reported leaving the profession of midwifery when they reached an unsustainable balance between the demands of work life and personal life. The decision to leave midwifery was emotional; participants maintained a strong connection to midwifery. The leaving process supports a theoretical premise for midwifery turnover behaviour. The work life of midwives is a complex composite of challenges that are reflective of identified problems with maternity care in the United States.

Implications for the Profession and/or Patient Care

Midwives are not leaving practice because they want to leave midwifery but because they are unable to meet non-work-related caring demands. Family-friendly policies, such as flexible schedules and leave policies, could help retain the midwifery workforce.

Patient or Public Contribution

Based on recommendations from representatives of historically marginalised groups within the midwifery community, we offered participants to be interviewed by a midwife of colour.

A Concept Analysis of Expertise Associated With Practicing Clinical Nurses in Hospital Settings

ABSTRACT

Aim

Analyse the concept of expertise among practicing clinical nurses in hospital settings.

Background

The generational loss of expert clinical nurses was exacerbated globally by the novel coronavirus. This ongoing loss combined with the increased complexity of hospitalised patients has prompted an urgent need to understand expertise among clinical nurses who practice in hospital settings.

Methods

Walker and Avant's concept analysis method was used. PubMed, Medline, CINAHL and Access Medicine were searched (1982–2025) for research studies and literature reviews published in English that addressed clinical nursing expertise in hospitals.

Results

Expertise is the knowledge and skills that are enculturated from immersion in a domain. Common attributes include obtaining salient information from different sources, interpreting patient situations rapidly and holistically, and performing actions that are individualised, immediate and appear instinctive. Common antecedents include deliberate accumulation of relevant experience and contextual connections within the hospital. Facilitating improved outcomes and facilitating improved outcomes are common consequences.

Conclusion

The attributes, antecedents and consequences of clinical nursing expertise are complementary and cross specialties. Experts' apparently instinctive actions are not intuitive but rather related to relevant past experiences, pattern recognition and skilled know-how. The requirements to develop expertise have evolved with the increased volume of available knowledge.

Implications for the Profession

Expertise requires cultivating relevant experiences through active engagement with patients and creating contextual connections with others regarding hospital systems and processes. Experts should be formally included when developing processes and guidelines. Low-fidelity proxy measures like years of experience should be replaced with psychometrically validated instruments to measure expertise.

Impact

This concept analysis addresses the ambiguity of clinical nursing expertise by synthesising over 40 years of literature and provides insights for clinical nurses and researchers regarding the importance of context and the growing complexity of care delivery.

Patient or Public Contribution

No patient or public involvement.

Knowledge, Attitudes and Practice of Informal Caregivers of People Living With Stroke: A Scoping Review of Recent Literature

ABSTRACT

Aims

The study aimed to explore the recent scientific literature regarding the knowledge, attitudes and practices of informal caregivers towards supporting a person with astroke.

Design

This study was a scoping review that followed the Joanna Briggs Institute (JBI) methodology and PRISMA-ScR (Preferred Reporting Items for Systematic Reviews and Meta-Analyses, Scoping Review extension) guidelines.

Data Sources

Searches were conducted across Medline, CINAHL, PsycINFO, EMBASE, Cochrane, SCOPUS and Web of Science from January 2009 to January 2024.

Review Methods

The search results from the various database sources were collated in EndNote 20 and duplicates were removed. Following the removal of duplicates, the studies were imported to Covidence and filtered based on the well-defined eligibility criteria. Three reviewers independently conducted screening and data extraction, and any conflicts were resolved through discussion.

Results

The analysis included a total of 37 studies that focused on the knowledge, attitudes and practices related to stroke caregiving. Of these, 15 studies addressed knowledge, 24 studies examined attitudes and 33 studies looked at caregiver practices.

Conclusion

This scoping review finds that lack of knowledge impacts the attitudes and practices of informal stroke caregivers. With the increasing incidence of stroke and the growing number of caregivers, there is an urgent need for targeted, individualised interventions accompanied by comprehensive evaluation.

Impact

Caregivers of people with stroke are often unprepared to provide care. Further research is needed to support these individuals, ensuring improved quality of life and better health outcomes for both the caregiver and the person with stroke.

Patient or Public Contribution

Not applicable.

How Government Policies and Organisational and Sectoral Circumstances Influence Nurse Practitioner and Physician Assistant Employment and Training: A Realist Analysis Using Surveys

ABSTRACT

Aims

To explain how government policies affected decision-making on Nurse Practitioner and Physician Assistant employment and training within Dutch healthcare organisations, and how organisational and sectoral circumstances were influential.

Design

An online, cross-sectional survey study.

Methods

A literature- and interview-based program theory was tested using surveys. Respondents from hospital care, (nursing) home care, primary care, and intellectual disability services were recruited using convenience sampling. Data analysis used descriptive statistics and inferential tests. Open-ended responses were analysed using thematic synthesis techniques. Survey results were clustered to assess verification, falsification, or refinement of program theory elements.

Results

A total of 568 experts in hiring and training healthcare professionals participated. Respondents indicated that most government policies promoted employment and training. Organisational and sectoral circumstances caused significant variations in Nurse Practitioner and Physician Assistant deployment across healthcare sectors, shaping how decision-makers interpreted and acted on government policies. Specific circumstances within primary care hampered deployment.

Conclusion

Government policies stimulated training and employment by: (1) removing practice restrictions (scope of practice expansion, legal acknowledgment), (2) facilitating cost-effective training and deployment (training grants, billing options), (3) providing sectoral knowledge on deployment, training, and healthcare outcomes (funding research and a sectoral knowledge center), and (4) establishing sectoral agreements (on apprenticeships). Organisational and sectoral circumstances significantly influenced outcomes. Key circumstances included flanking policies, stakeholder support, labor market capacity, healthcare demand, organisational resources and aims, and type of decision-makers (medical doctor or manager/director). Familiarity with the professions stimulated deployment.

Impact and Implications

The refined and verified program theory supports designing effective skill-mix policies and facilitating Nurse Practitioner and Physician Assistant employment and training. Tailoring skill-mix policies can optimise outcomes. This offers opportunities for governments, healthcare funders, organisations, and professionals to contribute to healthcare quality, cost efficiency, and patient satisfaction.

Patient or Public Contribution

Healthcare professionals were part of the study population.

The Associations Between Nurses' Perceived Adequacy of Staffing and Quality of Nursing Care and Job Enjoyment: A Multilevel Modelling Approach

ABSTRACT

Aim

To explore the associations of (1) shift-to-shift Nurse Perceived Adequacy of Staffing Scale (NPASS) scores and (2) the relative contribution of individual NPASS items to nurse-perceived quality of care (NPQoC) and job enjoyment.

Design

Multihospital prospective observational study.

Methods

The study was conducted across 15 medical, surgical or acute admission hospital wards in three teaching hospitals in the Netherlands. Vocationally and bachelor-trained nurses conducted 1550 measurements of perceived adequacy of staffing using the NPASS, NPQoC and job enjoyment in 797 shifts. Multilevel models were used to assess associations between NPASS scores and NPASS items and the outcome variables.

Results

Higher NPASS scores were significantly associated with improved NPQoC and job enjoyment. An increase in 1.0 point NPASS score leads to an increase of 0.97 points in NPQoC and 1.04 points in job enjoyment. Of the NPASS items, energy level, adherence to protocols and the opportunity for adequate breaks had the most positive effect on both outcomes.

Conclusion

Perceived adequacy of staffing as measured by the NPASS is highly relevant for improvements in both NPQoC and job enjoyment.

Implications for the Profession and/or Patient Care

Decision-makers on nurse staffing should incorporate the NPASS in staffing methods to ensure adequate staffing and the associated benefits. Policies that ensure adequate breaks, adherence to protocols and maintenance of nurses' energy levels during the shift should be implemented with special attention.

Impact

This study provides supportive evidence for incorporating nurses' perceived adequacy of staffing, as measured by the NPASS, to ensure adequate staffing. This is crucial for nurse retention, and therefore vital to maintaining accessible healthcare given the global nursing shortages.

Reporting Method

The STROBE checklist was used to conduct and describe the study.

Patient or Public Contribution

This study did not include patient or public involvement in its design, conduct or reporting.

Leveraging Artificial Intelligence to Inform Care Coordination by Identifying and Intervening in Patients' Unmet Social Needs: A Scoping Review

ABSTRACT

Aim

We reviewed how artificial intelligence has been applied to inform care coordination by identifying and/or intervening in patients' unmet social needs.

Design

Scoping review.

Data Sources

PubMed, CINAHL, PsycInfo, and Scopus databases were searched for articles published by November 2023.

Methods

Articles were excluded if they were reviews or protocols, did not explicitly mention artificial intelligence, or did not primarily focus on using it to identify and/or address unmet needs to inform care coordination.

Results

Of 476 articles that underwent title and abstract screening, 102 were assessed for full-text eligibility, and eight were ultimately included. Five articles used both natural language processing and machine learning; two articles used natural language processing; and one article used machine learning. Half (n = 4) of the articles focused on using artificial intelligence to identify/predict social needs, and two each focused on artificial intelligence to examine social resource provision or to indirectly identify social needs or using artificial intelligence to facilitate addressing unmet needs through care coordination.

Conclusions

This review can inform an understanding of facilitators and barriers to the implementation of artificial intelligence in practice, to potentially improve patient care, health outcomes, and population health equity.

Implications for Patients and the Profession

Using artificial intelligence to promote care coordination can expand opportunities to identify and intervene on social needs across more patients, with implications for nurses and other health professionals. It can also potentially exacerbate inequities and harm patient trust.

Impact

The findings suggest a gap between the practice of incorporating artificial intelligence into integrated care platforms and the available scientific literature. This review can provide healthcare providers and organisations with insights into integrating artificial intelligence into clinical workflows, which may inform decisions about whether or how to implement these technologies in clinical settings.

Reporting Method

We followed PRISMA-ScR guidelines.

No Patient or Public Contribution.

Challenges in Planning the Hospital Nursing Workforce Under the Government‐Led Response to COVID‐19 in South Korea: A Descriptive, Qualitative Study

ABSTRACT

Aims

To explore the experiences of nurse leaders and managers in planning the hospital nursing workforce in accordance with the government-led response to the COVID-19 pandemic in South Korea.

Design

Descriptive, qualitative study.

Methods

Semistructured interviews were conducted with 10 participants at three general hospitals in Seoul and Gyeonggi Province from August to October 2022. Eligible participants were nurse leaders and managers who were involved in decision making and management of the nursing workforce for the COVID-19 response or who served on a COVID-19 response team at each study hospital. Data were analysed using inductive content analysis.

Results

Four main themes emerged from the interview data, each with subthemes: exacerbated inherent vulnerabilities, highlighting existing nursing shortages and financial constraints; delay to systematic response, with frequent government ad-hoc orders increasing disruptions to on-site operations and inefficiencies of the external workforce; creation of new conflicts, including those related to nursing staff deployment and compensation gaps and demands on new leadership, with the need for effective crisis management and visionary leadership.

Conclusion

The results indicate that nurse leaders and managers face unexpected challenges in effectively planning their nursing workforce during the pandemic. These challenges are further compounded by centralised ad-hoc government orders that prioritise the urgent demands of COVID-19 patient care, often overlooking the unique needs and circumstances of individual hospitals.

Impact

There is a need for more flexible and localised workforce planning strategies to better support nurse leaders and managers. Furthermore, ongoing collaboration between healthcare leaders and policymakers is crucial to address the disconnect between centralised government-led responses and hospital-specific needs, which could enhance the resilience of the nursing workforce and improve disaster and emergency preparedness in the future.

Reporting Method

COREQ checklist was used.

Patient or Public Contribution

No patient or public contribution. Data were obtained from healthcare professionals.

A Multi‐Method Study to Develop and Pilot Test an Interprofessional Transitional Care Model for Frail Older Adults – AdvantAGE

ABSTRACT

Aim(s)

To develop and pilot test the AdvantAGE transitional care model at a Swiss geriatric hospital.

Design

Multi-method design.

Methods

The study progressed in three stages from January 2021 to December 2023: (1) contextual analysis using the Consolidated Framework for Implementation Research, incorporating qualitative interviews, (2) development and pilot testing of transitional care interventions on three acute geriatric wards using a descriptive explorative study design and (3) development and validation of a logic model using an iterative approach involving project interest groups and researchers.

Results

We identified central challenges and needs related to transitions from hospital to home, including insufficient information flow, patient and caregiver insecurities and lacking adherence to recommended treatment. The newly developed transitional care model comprised five core elements: continuous support for patients and caregivers, care coordination with primary care providers, comprehensive health management at home, medication- and self-management with patients and caregivers and advance care planning. Of 137 eligible patients, 62 participated in the 10-month pilot test of the preliminary transitional care intervention, with an average participation duration of 69 days. Findings from the pilot informed the refinement of the intervention elements and the development of a preliminary logic model.

Conclusion

Employing an implementation science approach facilitated the development and refinement of the AdvantAGE model, ensuring alignment with the needs of project interest groups and the specific implementation context.

Impact

This study demonstrates the development of a transitional care model tailored to the specific needs and circumstances of the local healthcare context. Findings provide valuable insights for healthcare practitioners, researchers and policymakers, offering implications for developing transitional care practices and policies.

Patient or Public Contribution

Limited patient and public involvement was incorporated, focusing on the interpretation of the findings of the first step of this study. Further contributions included providing feedback on the development of the elements of the AdvantAGE transitional care model, ensuring the research addressed priorities relevant to patients and primary health care providers in Basel-Stadt.

A Systematic Review of the Needs of Children and Young People of a Parent Diagnosed With Young‐Onset‐Dementia: Informing a Nursing Intervention

ABSTRACT

Aim

The aim of this study was to understand the needs of children and young people of a parent with young-onset dementia, to inform the development of a nursing model.

Background

Children and young people of a parent diagnosed with young onset dementia have a range of needs that are subject to change and aligned to their stage of development and growth.

Design

Systematic review.

Data Sources

Searches were conducted in PsycInfo (1806–Jan 2025), Medline (1996–Jan 2025) and CINAHL (1961–Jan 2025); search terms were developed in consultation with an academic librarian.

Review Methods

The Preferred Reporting Items for Systematic reviews and Meta-Analyses was used to assess the trustworthiness and applicability of the findings and the Mixed Methods Assessment Tool to assess quality. The review protocol was registered on PROSPERO (CRD42024534104). Needs identified from the literature were matched with the activities and interventions of a specialist nursing model.

Results

Searches yielded 223 records of which 17 met the inclusion/exclusion criteria, the majority of which used qualitative methods (N = 16). A thematic synthesis approach was used to analyse data to reveal four emergent themes: (1) finding a way, (2) social connection and peer support, (3) preserving childhood and adolescence and (4) practical support, including the needs relating to education. Identified needs: knowledge and information, emotional support, consistency in education and development, maintaining social connections, physical and psychological well-being, and grief and loss were mapped against a specialist nurse role.

Conclusion

Children and young people with a parent diagnosed with young-onset dementia face unique challenges compared to older carers. Despite growing awareness of their needs, this population is often overlooked in national dementia strategies. Developing a specialist nurse role is a positive step, but broader systemic support is essential to safeguard their well-being and future opportunities.

Reporting Method

This study adheres to the PRISMA reporting guidelines.

Patient or Public Contribution

A bespoke Research Advisory Group, consisting of people with young onset dementia, young family carers, clinicians and academics, guided the review.

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