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To describe what is known from existing scientific literature on children's and parents’ experiences of hospital-based home care and to identify future research areas.
The scoping review design used adheres to the methodological framework of Arksey and O'Malley, and to the PRISMA-ScR checklist.
A systematic search was conducted, and peer-reviewed scientific papers were screened through the application of Rayyan software. Data were extracted and presented in table and synthesised thematically as narrative text.
Searches were carried out November 2021 and updated November 2022 in the CINAHL, MEDLINE, Embase, Cochrane, Scopus, Web of Science, Academic Search Elite, and Amed databases and Google Scholar.
A total of 1950 studies were screened and assessed for eligibility. Eight studies met the inclusion criteria by reporting on parents' experiences, whereas five out of these eight studies also reported on the experiences of children. Parents of children with cancer and preterm children reported feeling more in control, being empowered, and being more connected to their children's care team when their children were receiving hospital-based home care. The family's own resources were activated, and they felt more involved in their children's care compared to being in an inpatient setting.
Children with cancer, acute infection, chronic disease, and/or a syndrome reported feeling safer and more comfortable in their home environment and experienced better interaction with their care providers. Some aspects of the children's health-related quality of life (HRQOL) were improved.
The identified studies indicate that hospital-based home care is a valued alternative to traditional inpatient care by both parents and children. The mode of care has no crucial negative effects. Future studies should encompass the experiences of children with different diagnoses and syndromes and compare patients treated in a traditional hospital setting with those in a hospital-based home-care programme.
Children's and parents’ experiences of HBHC indicate that it offers a good solution if parents are well prepared and feel in control. In addition, certain structural conditions must be in place before this type of care can be established: there must be a certain number of patients and the hospital must not be too far away. In the field of neonatal home care, professionals should be more responsive to fathers’ needs and tailor support by focusing on their individual experiences and needs. Our findings may guide and inform best practice for present and future providers of HBHC.
Hospital-based home care can offer families a greater degree of autonomy, more flexible care options, improved family functioning, improved communication with care providers, and more control over the child's care. When certain structural conditions are met, such as a certain number of patients, the hospital not being too far away, and parents being well prepared and feeling in control, then hospital-based home care is valued as an alternative to traditional inpatient care. Specific aspects of children's HRQOL may improve, and the psychosocial burden on the family does not increase.
HBHC provides a valued alternative to traditional inpatient care and allows families to receive care in the comfort of their own home. Our findings may guide and inform best practice for present and future providers of hospital-based home care.
In this scoping review, we have adhered to the Preferred Reporting Items for Systematic reviews and Meta Analyses Extension for Scoping Reviews checklist.
There has been no direct patient or public contribution to the review.
Not required.
To determine and describe what interventions exist to improve nurse–family communication during the waiting period of an emergency department visit.
Communication between nurses and families is an area needing improvement. Good communication can improve patient outcomes, satisfaction with care and decrease patient and family anxiety.
Scoping Review.
A scoping review was conducted following the Joanna Briggs Institution methodology: (1) identify the research question, (2) define the inclusion criteria, (3) use a search strategy to identify relevant studies using a three-step approach, (4) select studies using a team approach, (5) data extraction, (6) data analysis, and (7) presentation of results.
Medline, CINAHL, EMBASE, PsychInfo and grey literature were searched on 3 August 2022.
The search yielded 1771 articles from the databases, of which 20 were included. An additional seven articles were included from the grey literature. Paediatric and adult interventions were found targeting staff and family of which the general recommendations were summarised into communication models.
Future research should focus on evaluating the effectiveness of interventions using a standardised scale, understanding the specific needs of families, and exploring the communication models developed in this review.
Communication models for triage nurses and all emergency department nurses were developed. These may guide nurses to improve their communication which will contribute to improving family satisfaction.
PRISMA-ScR.
Protocol has been registered with the Open Science Framework, registration number 10.17605/OSF.IO/ETSYB.
No patient or public contribution.
To establish a supportive care framework for addressing unmet needs among breast cancer survivors, providing practical guidance for healthcare providers to assess and manage these needs, ultimately enhancing the health outcomes and quality of life of breast cancer survivors.
We conducted a two-round Delphi survey to gather expert opinions regarding the unmet needs supportive care framework for breast cancer survivors.
Initial framework identification and inquiry questionnaire creation was achieved via literature search and expert group discussions, which included 15 experts from nursing practice, clinical medicine, nursing management and nursing education was conducted using a Delphi survey. To establish consensus, a two-round Delphi poll was done, using criteria based on the mean (≥4.0), coefficient of variation (CV < 0.25) and percentage for entire score (≥20%).
Experts reached a consensus, leading to six care modules, and 28 care entries: Tumour Detection Support (three care entries), Management of Complications of Antitumor Therapy (seven care entries), Healthy Lifestyle Management (five care entries), Sexual and Fertility Support (four care entries), Psychosocial Support (four care entries) and Resource and Linkage Support (five care entries).
To address breast cancer survivors' unmet needs, a supportive framework was developed to actively enhance their health outcomes. However, further refinement and feasibility testing using mobile devices or artificial intelligence are required.
This pioneering framework prioritises addressing unmet needs and equips healthcare providers to assess and manage these needs effectively, facilitating the implementation of programs aimed at improving the well-being of breast cancer survivors.
This study was guided by a modified guideline for the Conducting and Reporting of Delphi Studies (CREDES) (Palliative Medicine, 31(8), 684, 2017).
No Patient or Public Contribution.
The Delphi study methodology does not require registration.
Healthcare consumers require diverse resources to assist their navigation of complex healthcare interactions, however, these resources need to be fit for purpose.
In this study, we evaluated the utility, usability and feasibility of children, families and adults requiring long-term intravenous therapy using a recently developed mobile health application (App), intravenous (IV) Passport.
Multi-site, parallel, multi-method, prospective cohort study.
A multi-site, multi-method study was carried out in 2020–2021, with 46 participants (20 adults, 26 children/family) reporting on their experiences surrounding the use of the IV Passport for up to 6 months.
Overall, utility rates were acceptable, with 78.3% (N = 36) using the IV Passport over the follow-up period, with high rates of planned future use for those still active in the project (N = 21; 73%), especially in the child/family cohort (N = 13; 100%). Acceptability rates were high (9/10; IQR 6.5–10), with the IV Passport primarily used for documenting new devices and complications. Thematic analysis revealed three main themes (and multiple subthemes) in the qualitative data: Advocacy for healthcare needs, Complexity of healthcare and App design and functionality.
Several recommendations were made to improve the end-user experience including ‘how to’ instructions; and scheduling functionality for routine care.
The IV Passport can be safely and appropriately integrated into healthcare, to support consumers.
Patient-/parent-reported feedback suggests the Intravenous Passport is a useful tool for record-keeping, and positive communication between patients/parents, and clinicians.
Not applicable.
Consumers reported their experiences surrounding the use of the IV Passport for up to 6 months.
To determine the association between nurse and institutional characteristics and perceived professional nurse knowledge and self-efficacy of reporting child abuse and neglect.
A sample of N = 166 nurses were recruited to respond to the Reporting of Suspected Child Abuse and Neglect (RSCAN) survey.
A multiple linear regression examined whether nurse characteristics and institutional characteristics were associated with the two RSCAN survey domain scores.
Perceived knowledge of a workplace child abuse and neglect protocol was associated with the knowledge subscale. Education and child abuse and neglect expertise were significant predictors of the self-efficacy subscale. Nurses with a master's or higher degree and those who identified as being either forensic, paediatric or Emergency Department nurses, had less perceived institutional barriers to self-efficacy of reporting child abuse and neglect.
This study provides a preliminary insight into the institutional barriers and facilitators of nurses as child abuse and neglect mandated reporters.
To encourage innovative education and collaborations to support nurses as fully informed child abuse and neglect mandated reporters.
This research identifies the gaps and facilitators of nurses as child abuse and neglect mandated reporters to inform healthcare professionals and academic institutions on the importance of nurse education and experience in nurse knowledge and self-efficacy in reporting suspected child abuse and neglect.
The authors of this study have adhered to relevant EQUATOR guidelines: STROBE.
There is no patient or public contribution as the study only looked at nurses.
Many adverse events are identified as nursing-sensitive indicators (NSIs) and have evidence-based care bundles known to reduce risk of occurrence. Kamishibai cards are a tool from the manufacturing industry used for practice auditing and improvements. Use of Kamishibai cards is believed to be common in the healthcare setting, but true evidence-based guidelines do not yet exist to guide their implementation.
The aim of this integrative review was to identify best practices around the implementation of Kamishibai cards in the healthcare setting for improvement in NSI-associated outcomes.
Eleven nurses at three facilities worked through the evidence using the Johns Hopkins Evidence-Based Practice Model.
Ten articles were included for this review. Broad themes included direct observation with non-punitive and timely feedback, clearly visualized results, use of evidence-based care bundles, pre-implementation education, and both leadership and frontline-staff involvement. All facilities showed improvement in NSI-associated outcomes after the implementation of K-cards.
In health care, K-cards can be implemented and designed with additional focus on the bundles of care they are intended to audit and staff support, but further evidence would better define guidelines around implementation.
Hospital-acquired pressure injuries (HAPIs) pose significant challenges in healthcare and cause increased patient suffering, longer hospital stays, and higher healthcare costs. Paediatric patients face unique risks, but evidence remains scarce. This study aimed to identify and describe HAPI admission incidence and severity predictors in a large Australian children's hospital.
This retrospective cohort study investigated all paediatric patients between January 2020 and December 2021 using a census approach. Demographic and clinical data including HAPI-related data were accessed from the incident monitoring and hospital administration databases. The incidence rate (per 1000 patient admissions) was calculated based on all admissions. Predictors of HAPI severity were identified using multivariable multinomial logistic regression. The study adhered to the STROBE guidelines for retrospective cohort studies.
The HAPI incidence rate was 6.96 per 1000 patient admissions. Of the age groups, neonates had the highest HAPI incidence (15.5 per 1000 admissions). Critically ill children had the highest rate for admission location (12.8 per 1000 patient admissions). Most reported cases were stage I (64.2%). Age was associated with injury severity, with older paediatric patients more likely to develop higher-stage HAPIs. Additionally, Aboriginal and/or Torres Strait Islander patients had a higher HAPI severity risk.
HAPI injuries in paediatric patients are unacceptably high. Prevention should be prioritized, and the quality of care improved in Australia and beyond. Further research is needed to develop targeted prevention strategies for these vulnerable populations.
This research emphasizes the need for standardized reporting, culturally sensitive care and tailored prevention strategies.
The research has the potential to influence healthcare policies and practices, ultimately enhancing the quality of patient care.
STROBE guidelines.
There was no patient or public contribution to the conduct of this study.
To assess agreement of pressure injury risk level and differences in preventative intervention prescription between nurses using a structured risk assessment tool compared with clinical judgement.
Interrater agreement study.
Data were collected from November 2019 to December 2022. Paired nurse-assessors were allocated randomly to independently assess pressure injury risk using a structured tool (incorporating the Waterlow Score), or clinical judgement; then prescribe preventative interventions. Assessments were conducted on 150 acute patient participants in a general tertiary hospital. Agreement of risk level was analysed using absolute agreement proportions, weighted kappa and prevalence-adjusted and bias-adjusted kappa.
Ninety-four nurse assessors participated. Absolute agreement of not-at-risk versus at-risk-any-level was substantial, but absolute agreement of risk-level was only fair. Clinical judgement assessors tended to underestimate risk. Where risk level was agreed, prescribed intervention frequencies were similar, although structured tool assessors prescribed more interventions mandated by standard care, while clinical judgement assessors prescribed more additional/optional interventions. Structured tool assessors prescribed more interventions targeted at lower-risk patients, whereas assessors using clinical judgement prescribed more interventions targeted at higher-risk patients.
There were clear differences in pressure injury risk-level assessment between nurses using the two methods, with important differences in intervention prescription frequencies found. Further research is required into the use of both structured tools and clinical judgement to assess pressure injury risk, with emphasis on the impact of risk assessments on subsequent preventative intervention implementation.
The results of this study are important for clinical practice as they demonstrate the influence of using a structured pressure injury risk assessment tool compared to clinical judgement. Whilst further research is required into the use of both structured tools and clinical judgement to assess pressure injury risk and prescribe interventions, our findings do not support a change in practice that would exclude the use of a structured pressure injury risk assessment tool.
This study adhered to the GRRAS reporting guideline.
No patient or public involvement in this study.
Educators and researchers can use the findings to guide teaching about pressure injury risk assessment and preventative intervention and to direct future studies. For clinical nurses and patients, a change in clinical practice that would exclude the use of a structured risk assessment tool is not recommended and further work is needed to validate the role of clinical judgement to assess risk and its impact on preventative intervention.
To explore youth, caregiver and staff perspectives on their vision of trauma-informed care, and to identify and understand potential considerations for the implementation of a trauma-informed care programme in an inpatient mental health unit within a paediatric hospital.
We applied the Interpretive Description approach, guided by complexity theory and the Implementation Roadmap, and used Applied Thematic Analysis methods.
Twenty-five individuals participated in individual or group interviews between March and June 2022, including 21 healthcare professionals, 3 youth and 1 caregiver. We identified two overarching themes. The first theme, ‘Understanding and addressing the underlying reasons for distress’, related to participants’ understanding and vision of TIC in the current setting comprising: (a) ‘Participants’ understanding of TIC’; (b) ‘Trauma screening and trauma processing within TIC’; (c) ‘Taking “a more individualized approach”’; (d) ‘Unit programming’; and (e) “Connecting to the community”. The second theme, ‘Factors that support or limit successful TIC implementation’ comprises: (a) ‘The need for a broad “cultural shift”’; (b) ‘The physical environment on the unit’; and (c) ‘Factors that may limit successful implementation’.
We identified five key domains to consider within trauma-informed care implementation: (a) the centrality of engagement with youth, caregivers and staff in trauma-informed care delivery and implementation, (b) trauma-informed care core programme components, (c) factors that may support or limit success in implementing trauma-informed care within the mental health unit and (d) hospital-wide and (e) the importance of intersectoral collaboration (partnering with external organizations and sectors).
When implementing TIC, there is an ongoing need to increase clarity regarding TIC interventions and implementation initiatives. Youth, caregiver and healthcare professional participants shared considerations important for planning the delivery and implementation of trauma-informed care in their setting. We identified five key domains to consider within trauma-informed care implementation: (a) the centrality of relational engagement, (b) trauma-informed care programme components, (c) factors that may support or limit successful implementation of trauma-informed care within the mental health unit and (d) hospital-wide and (e) the importance of intersectoral collaboration. Organizations wishing to implement trauma-informed care should consider ongoing engagement with all relevant knowledge user groups throughout the process.
Standards for Reporting Qualitative Research (SRQR).
The local hospital research institute's Patient and Family Advisory Committee reviewed the draft study methods and provided feedback.
To analyse the influence of the COVID-19 pandemic and the perception of self-efficacy on the health professionals of the Spanish out-of-hospital emergency services.
Observational, cross-sectional and descriptive with a survey methodology of 1710 participants from Spain (1 February–30 April, 2021).
The mental health of healthcare workers was assesed in terms of stress, anxiety and depression, as well as their self-efficacy. Linear and logistic regression models were fitted to predict these variables. A moderation analysis was conducted to determine the effect of self-efficacy on mental health.
The means of the sample for stress, anxiety, depression and self-efficacy were 20.60, 15.74, 13.07 and 70.87, respectively. In the regression models, being a woman was the most significant factor for severe mental health impairment. Female gender was also a relevant factor for self-efficacy. Self-efficacy had a direct effect on the mental health for working in patient care.
Healthcare workers showed moderate stress, severe anxiety, mild depression and good self-efficacy. Direct patient care was associated with more stress and severe anxiety. Age, female gender, job changes and job adjustment were associated with levels of stress, anxiety and depression. Self-efficacy is a determining factor of mental health in the direct care modality.
The mental health of healthcare workers has been of great importance in the aftermath of the pandemic, but out-of-hospital emergency workers have been neglected in research. The levels of stress, anxiety and depression during the pandemic justify the creation of prevention and early diagnosis programmes, as they are essential in a health disaster. Surprisingly, their high level of perceived self-efficacy directly impact on the mental health of patient helthcare workers, so improving it will reduce the psychological risk.
We have followed the STROBE guidelines. It has been partially funded by the Asistencia Sanitanitaria Interprovincial de Seguros - ASISA Foundation (Spain).
‘No patient or public involvement’.
To explore experiences of patients affiliated to a cross-sectorial outgoing lung team.
The outgoing lung team consisted of respiratory nurses from the hospital and community nurses. The lung team offered 24/7 help to patients with advanced chronic obstructive pulmonary disease (COPD) through visits and/or treatment in the patients' home. Affiliation to the lung team reduced both hospitalizations and length of hospital stay due to acute exacerbation of COPD. However, based on questionnaires on health-related quality of life, no significant differences were found between patients affiliated to the lung team and patients receiving usual care.
A qualitative interview study.
In total, 16 patients, aged 61–88 years were interviewed between February 2019 and July 2021. They had been affiliated to the outgoing lung team for 1–3 years. Semi-structured interviews were conducted in the patients' home and audio-recorded after informed consent was obtained. The interviews were transcribed verbatim and analysed, inspired by systematic text condensation by Malterud.
Four themes emerged from the analysis: (1) feeling safe, (2) improvements in living with COPD, (3) avoiding hospitalization and (4) satisfied with staying at home.
Affiliation to the cross-sectorial outgoing lung team gave the patients peace of mind and improved their ability to live with advanced COPD. The patients preferred contacting the lung team because they could stay at home and receive treatment, and thus avoid hospitalization.
The findings from this study support that municipalities should consider implementing an outgoing lung team, as it has the potential to bring several benefits, including improving patient self-management.
The manuscript adhered to Consolidated criteria for reporting qualitative research (COREQ) guideline.
Patients were interviewed. Additionally, no patient or public contributed to the design or conduction of the study, analysis, or interpretation of the data.
This systematic integrative literature review explores how clinicians make decisions for patient management plans in telehealth.
Telehealth is a modality of care that has gained popularity due to the development of digital technology and the COVID-19 pandemic. It is recognized that telehealth, compared to traditional clinical settings, carries a higher risk to patients due to its virtual characteristics. Even though the landscape of healthcare service is increasingly moving towards virtual systems, the decision-making process in telehealth remains not fully understood.
A systematic integrative review.
Databases include CINAHL, APA PsycInfo, Academic Search Complete, PubMed, Web of Science and Google Scholar.
This systematic integrative review method was informed by Whittemore and Knafl (2005). The databases were initially searched with keywords in November 2022 and then repeated in October 2023. Thematic synthesis was conducted to analyse and synthesize the data.
The search identified 382 articles. After screening, only 10 articles met the eligibility criteria and were included. Five studies were qualitative, one quantitative and four were mixed methods. Five main themes relevant to decision-making processes in telehealth were identified: characteristics of decision-making in telehealth, patient factor, clinician factor, CDSS factor and external influencing factor.
The decision-making process in telehealth is a complicated cognitive process influenced by multi-faceted components, including patient factors, clinician factors, external influencing factors and technological factors.
Telehealth carries higher risk and uncertainty than face-to-face encounters. CDSS, rather than bringing unification and clarity, seems to bring more divergence and ambiguity. Some of the clinical reasoning processes in telehealth remain unknown and need to be verbalized and made transparent, to prepare junior clinicians with skills to minimize risks associated with telehealth.
Not applicable.
To explore self-care and needs and preferences towards tailored self-care support of patients with rheumatoid arthritis at the outpatient clinic.
A sequential explanatory mixed method design.
The Self-Care of Chronic Illness Inventory questionnaire, two focus groups and six semi-structured interviews were conducted between November 2021 and April 2023. Questionnaires of 107 patients were descriptively analysed. Subsequently, 11 patients and 2 healthcare professionals participated in the focus groups and 6 patients in the interviews, which were thematically analysed.
Quantitative and qualitative data corresponded and showed that patients perform various self-care activities at an adequate level and have strategies to exert control and reduce symptoms. One key theme emerged: ‘Not only being the person with rheumatoid arthritis’ (RA) as patients primarily aim to get on with their lives. Nine subthemes covered self-care activities for maintaining health including staying physically active, finding the right medication and dose and adapting their diet. Patients differed in how they self-monitored their symptoms. Recognizing symptoms and finding strategies to manage symptoms included the process of body listening in which patient seek and try different strategies to find what works for them and incorporate routines. Patients experienced positive effects of a warm or cold environment. Patients felt the need for practical and emotional support from others and preferred having credible information.
Patients perform adequate self-care including a diversity of self-care activities to get on with their lives and have strategies to reduce and control the symptoms and impact of RA.
Tailoring self-care support to patients' individual needs and preferences is necessary to help patients cope with the erratic nature of the disease and maintain their quality of life. Healthcare providers need to provide practical and emotional support and use credible information to allow patients to make self-care decisions to manage their lives.
Quantitative finding are reported according to the STROBE guidelines and qualitative finding are reported according to the COREQ guidelines.
Patients perform various self-care activities at an adequate level and have strategies to exert control and reduce symptoms. Patients primarily aim to continue their lives and not being seen as the person with rheumatoid arthritis. Healthcare professionals need to provide practical and emotional support and use credible information to inform patients' self-care decision-making.
No patient or public contribution.
To design, develop and validate a new tool, called NEUMOBACT, to evaluate critical care nurses' knowledge and skills in ventilator-associated pneumonia (VAP) and catheter-related bacteraemia (CRB) prevention through simulation scenarios involving central venous catheter (CVC), endotracheal suctioning (ETS) and mechanically ventilated patient care (PC) stations.
Simulation-based training is an excellent way for nurses to learn prevention measures in VAP and CRB.
Descriptive metric study to develop NEUMOBACT and analyse its content and face validity that followed the COSMIN Study Design checklist for patient-reported outcome measurement instruments.
The first version was developed with the content of training modules in use at the time (NEUMOBACT-1). Delphi rounds were used to assess item relevance with experts in VAP and CRB prevention measures, resulting in NEUMOBACT-2. Experts in simulation methods then assessed feasibility, resulting in NEUMOBACT-3. Finally, a pilot test was conducted among 30 intensive care unit (ICU) nurses to assess the applicability of the evaluation tool in clinical practice.
Seven national experts in VAP and CRB prevention and seven national simulation experts participated in the analysis to assess the relevance and feasibility of each item, respectively. After two Delphi rounds with infection experts, four Delphi rounds with simulation experts, and pilot testing with 30 ICU nurses, the NEUMOBACT-FINAL tool consisted of 17, 26 and 21 items, respectively, for CVC, ETS and PC.
NEUMOBACT-FINAL is useful and valid for assessing ICU nurses' knowledge and skills in VAP and CRB prevention, acquired through simulation.
Our validated and clinically tested tool could facilitate the transfer of ICU nurses' knowledge and skills learning in VAP and CRB prevention to critically ill patients, decreasing infection rates and, therefore, improving patient safety.
Experts participated in the Delphi rounds and nurses in the pilot test.
The aims of the study were to describe the processes used to introduce advanced practice nursing roles and factors that facilitated or hindered role implementation, examine the time advanced practice nurses (APNs) spend in role activities and how these activities relate to domains of advanced practice nursing and examine how implementation processes influenced APN integration within healthcare teams.
A multiple case study was conducted.
Five cases were included, representing the four population areas approved for advanced practice nursing in France. Data were collected from January to March 2021 using observation, interview and document analysis methods. Data were examined using thematic analysis.
Participants included APNs (n = 5), nurses/allied health providers (n = 5), physicians (n = 5), managers (n = 4) and decision-makers (n = 4). Stakeholder engagement and leadership provided by decision-makers, managers, physicians and APNs facilitated role implementation. Poor stakeholder role understanding, uncertain role funding, and the COVID-19 pandemic hindered role implementation. APNs spent the most time in clinical activities. Participants perceived the integration of APNs within the healthcare team and their impact on patient care to be positive.
Stakeholder engagement and organizational and APN leadership facilitated the implementation of the roles, especially related to team-based patient care. Further efforts are needed to strengthen APN involvement in non-clinical activities and address role barriers.
Systematic and system-wide approaches are needed to improve role clarity, role autonomy and health systems integration of APNs. Research should examine patient perspectives about APNs in France.
The results highlight how policies can create favourable conditions for advanced practice nursing role implementation in France. Internationally, this study serves as a reminder to APNs and nurse leaders about the strategies for and importance of implementation evaluation to support the optimal development of advanced practice nursing roles.
The study reporting followed the Consolidated Criteria for Reporting Qualitative Research.
No Patient or Public Contribution.
To explore the factors that affect the experiences of autistic patients in the hospital setting.
A scoping review.
A systematic literature search using the databases CINAHL, Medline and Google Scholar was undertaken in September 2021 and updated in January 2023. This review is based on the methodological framework of Arksey and O'Malley (International Journal of Social Research Methodology, 8(1):19–32, 2005), which was further refined by the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews.
Autistic patients, as well as their families and healthcare staff, face several barriers that can impact their healthcare experiences within hospital settings. Of 211 articles screened, 30 were eligible and included. Through our review, we identified two main themes. The first theme, ‘challenges to hospital experiences’, includes four sub-themes: (1) communication, (2) a mismatch between the needs for autistic patients and the hospital environment, (3) challenges related to parents' experiences and (4) challenges related to hospital systems. The second theme, ‘facilitators that improve hospital experiences’, includes three sub-themes: (1) provision of care pathways, (2) partnership between parents and experts and (3) facilitators to improve hospital systems. By understanding these themes, we can work to address the barriers that autistic patients and their families face, while leveraging the facilitators to improve their hospital experiences.
It is critical to understand the experiences of autistic patients in the hospital setting because they present a substantial risk of hospital admission due to their associated acute to chronic health conditions. Additionally, nurses and other medical staff must understand the unique hospital experiences and challenges of autistic patients to improve care and facilitate better hospital experiences. This review further highlights the crucial need to adopt a collaborative and inclusive approach between autistic patients, their families and healthcare staff. To achieve this, co-design initiatives that incorporate the perspectives and lived experiences of the autistic community are necessary. By placing autistic voices at the forefront of these initiatives, it is hoped that changes are meaningful, relevant and can be sustained.
Understanding the unique hospital experiences and challenges of autistic patients can improve their quality of life and well-being by reducing stress and anxiety during hospitalization, leading to better health outcomes and potentially shorter hospital stays. It can also promote a more positive view of healthcare among autistic individuals, encouraging them to seek medical care when needed and have broader societal impacts such as reducing healthcare costs and improving the overall health and well-being of the population. Autistic patients present a substantial risk of hospital admission due to their associated acute to chronic conditions. Nurses and other medical staff must understand the unique hospital experiences and challenges of autistic patients to improve care and facilitate better hospital experiences.
No patient or public contribution.
To evaluate gynaecological patients' preferences and satisfaction regarding information provision, exploring enablers and barriers to information access.
A descriptive cross-sectional survey design was used.
A total of 293 women accessing gynaecological services responded to the survey. Quantitative analysis included descriptive and inferential statistics. Content analysis was conducted on qualitative data.
Health professionals were the most common and preferred sources of gynaecological health information. Enablers to information provision included positive communication strategies by health professionals, participants having prior knowledge and doing their own research. Despite its widespread availability, only 24.2% of women preferred the internet as an information source. Poor communication and inadequate information provision were identified as barriers to information access. Statistically significant associations were identified between location of residence, education level, year of birth, diagnostic group and health information preferences. Recommendations from women included improved communication strategies, system changes and provision of individualized information.
Health professionals are central to women accessing information about gynaecological diagnoses. Areas for improvement include communication strategies, facilitating access to internet-based resources for information and consideration of women's preferences when providing health information.
Consumer co-design of gynaecological health information and communication training for health professionals is recommended. Improved communication and facilitated use of internet-based resources may improve women's understanding of information.
This study explored gynaecological patients' preferences and satisfaction regarding information provision, exploring enablers and barriers to information access. It was found that gynaecological patients preferred individualized information provided to them directly by health professionals and despite its widespread availability, the internet is an underutilized health information resource. These findings are applicable to health professionals and patients utilizing tertiary gynaecological health services in Australia but may be generalized if demographic data aligns with other jurisdictions.
The STROBE reporting method was used in the preparation of the manuscript.
No patient or public contribution.
To explore Danish women's experiences with opting out of cervical cancer screening and the role of the nurse in the women's decision-making process.
A qualitative study using semi-structured, individual interviews with a phenomenological-hermeneutic approach.
Interviews were conducted with 13 women with experience in opting out of cervical cancer screening. Women were recruited through a public flyer and interviewed virtually or by phone. The interviews were analysed using the theory of interpretation from Paul Ricoeur and consisted of three levels: naïve reading, structural analysis, and critical discussion and analysis. The present study adheres to the COREQ guidelines.
The women experience various personal causes for opting out of cervical cancer screening, such as low accessibility of screening appointments, discomfort during the smear test, fear of being sick, and insufficient information about the relevance of screening to the individual woman. The perceived disadvantages of screening outweighed their perceived advantages. The women's experiences did not include the role of the nurse in the procedures and knowledge sharing related to cervical cancer screening. However, nurses were described as having good communicative and relational qualifications relevant to being involved in cervical cancer screening.
It was challenging for the women to weigh the advantages and disadvantages of cervical cancer screening and thus to make an informed decision about participation. They expressed a need for more information on which to base their decision. This places nurses in a much needed, yet unexplored, role of identifying and lowering potential personal barriers that may outweigh the women's perceived benefits of participating in screening.
Nurses should play a more active role in cervical cancer screening such as improving general knowledge and facilitating two-way communication about its relevance.
The present study adheres to the Consolidated Criteria for Reporting Qualitative Research (COREQ) guidelines.
No patient or public contribution.
FreshRSS 