Conectar
Avoidable and unfair variation in access to palliative care exists for different groups of people and communities. Primary and community care teams deliver most palliative care and care to people at the end of life at home but the quality of care provided is variable. This is an under-researched area and receives little attention in service design and policy. This study will investigate the key contexts, resources and components required for an integrated approach to palliative care to deliver improved and more equitable outcomes for patients and carers.
This mixed-methods study adopts a realist methodological approach, and comprises four work packages:
A multi-perspective mixed-methods study to understand patient preferences and priorities in palliative care, prioritising recruitment of patients and family members/carers from areas of socioeconomic deprivation. Data collection will comprise: (1) qualitative interviews, (2) review of patient case notes and (3) a discrete choice experiment. Realist analysis will result in the development of theory based on the identification of the key contexts and underlying mechanisms required to achieve beneficial outcomes through an integrated approach to palliative care.
A realist evaluation of existing integrated models of palliative care will involve theory-refining interviews and theory-consolidating focus groups with professionals working in three different service areas.
Dynamic simulation modelling of the healthcare resources needed to deliver the proposed integrated approach, ensuring quality and equity.
The theoretical and economic modelling will be tested out at two expert stakeholder workshops to determine the key enablers to implementation in practice.
The study design was informed by patient and public involvement (PPI) with 16 patients and members of the public from diverse and socioeconomically deprived communities for 12 months in a National Institute for Health and Care Research-funded palliative care partnership. PPI will be continuous throughout the study, prioritising inclusivity.
Ethical approval was obtained from the East of Scotland Research Ethics Service Research Ethics Committee 2, on 20 August 2025 (IRAS ID: 354755) and Health Research Authority approval on 1 October 2025. The targeted dissemination strategy will include outputs and resources for key audiences including patients and families, professionals in primary care and specialist palliative care and service commissioners. The results will inform service delivery to reduce inequities and optimise the use of finite resources to maximise impact.
The study is registered with the ISRCTN UK Clinical Study Registry: https://www.isrctn.com/ISRCTN61092011.
Delayed post-polypectomy bleeding (DPPB) remains a significant complication of endoscopic resection, contributing to morbidity and increased healthcare costs. Although prophylactic clipping is widely practised to mitigate this risk, evidence from recent randomised controlled trials (RCTs) regarding its efficacy is inconsistent. This protocol outlines a systematic review and meta-analysis to evaluate the effectiveness of prophylactic clips following thermal resection.
We will conduct a comprehensive search of MEDLINE, EMBASE and the Cochrane Library from inception to 10 February 2026, to identify RCTs comparing prophylactic clips vs no clips in patients undergoing thermal endoscopic resection of non-pedunculated polyps. The primary outcome is DPPB within 30 days, defined as overt bleeding requiring medical intervention or a haemoglobin decrease ≥2 g/dL. Secondary outcomes include DPPB in proximal large (≥20 mm) lesions, perforation, post-polypectomy syndrome and procedure time. Data synthesis will use a random-effects model. Methodological quality will be assessed using the Cochrane Risk of Bias 2 tool. Publication bias will be visualised using funnel plots. We will quantify the effect of potential effect modifiers by meta-regression if appropriate. The quality of evidence will be evaluated according to the Grading of Recommendations Assessment, Development and Evaluation framework.
This study will not use primary data, and therefore formal ethical approval is not required. The findings will be disseminated through peer-reviewed journals and committee conferences.
CRD420251246840.
Crohn's disease (CD) is primarily characterised by chronic gastrointestinal inflammation; however, its systemic nature frequently leads to musculoskeletal complications. Among these, clinically significant foot pathologies can impair mobility and negatively impact patients' overall quality of life. Despite their relevance, the specific influence of podiatric manifestations on health-related quality of life in individuals with CD remains insufficiently explored, underscoring a critical gap in current disease management. The aim of this study was to assess the extent to which foot-related health issues affect the quality of life in people living with CD compared with a healthy population. This multicenter observational case–control study was conducted across five provinces in southern Spain—Málaga, Granada, Jaén, Sevilla, and Cádiz—between January 2024 and February 2025. The study included 110 participants, evenly divided between individuals diagnosed with CD (n = 55) and healthy controls (n = 55), matched for age, sex, and body mass index. All participants completed the validated Spanish version of the Foot Health Status Questionnaire (SFHSQ), which assesses four foot-specific domains and four general health domains. Due to the non-normal distribution of the data, non-parametric statistical methods were applied, with the Mann–Whitney U test used to evaluate differences between groups. Participants with CD exhibited significantly lower scores across all domains of the SFHSQ, with the exception of the Footwear domain, which showed no statistically significant difference (p = 0.406). Compared with healthy controls, individuals in the CD group reported greater impairments in foot pain, foot function, general foot health, and in broader health-related domains including general health, physical activity, and social capacity (p < 0.01 for all). CD significantly compromises foot-related QoL. These results highlight the need to include podiatric evaluations as part of comprehensive, multidisciplinary care approaches aimed at enhancing mobility, functional capacity, and general well-being in affected individuals.
Perinatal depression is a common, yet understudied, mental health disorder among women and contributes to poor engagement in prevention of mother-to-child transmission (PMTCT) of HIV in sub-Saharan Africa. Male partners are positioned to provide critical forms of social and economic support during pregnancy and postpartum, and also may contribute to women’s stress, depression and anxiety through intimate partner violence and withholding of social support. Despite the critical role of men in pregnancy outcomes and HIV prevention, few interventions have engaged men around women’s depressive symptoms, nutrition and health, and engagement in PMTCT. We will conduct a pilot trial of Mphatso, a couple-based intervention based on problem-solving therapy with couple relationship skills to reduce depressive symptoms in perinatal women, improve food insecurity and prevent HIV transmission to the infant.
We will employ a two-arm pilot randomised controlled trial in the Zomba district of Malawi to assess the feasibility and acceptability of Mphatso (meaning ‘gift’ or the child) and explore health impacts on depressive symptoms, PMTCT engagement and food insecurity. We will enrol 60 pregnant women in the second or third trimester who are living with HIV and meet criteria for probable depression based on the Edinburgh Postnatal Depression Scale and their male partners. Couples will be randomised to receive either five sessions of Mphatso (problem-management skills plus health education and relationship skills) or enhanced usual care. Feasibility and acceptability outcomes will include session attendance rates, satisfaction levels and retention at 3 months and 6 months postpartum. Exploratory analyses using regression models including time and treatment arm will be conducted to explore effects on the mothers’ and fathers’ depressive symptoms, adherence to PMTCT (antiretroviral therapy, nevirapine use, HIV testing and exclusive breastfeeding) and food insecurity.
The pilot trial has been approved by the University of California, San Francisco (Human Research Protection Program (HRPP); Protocol Number 23-40685), and the study has also been approved by the National Health Sciences Research Committee in Malawi (NHSRC; Protocol Number 24/05/4431). Results will be disseminated to study participants, health officials, policymakers, community leaders and care providers, as well as through presentations at conferences and publications in peer-reviewed journals.
In the UK, a range of services provide same day, urgent and emergency care (UEC). Urgent medical needs can be addressed through pharmacy services, same day general practice (GP) appointments, phone or online triage services, out-of-hours GP appointments and urgent treatment centres (or equivalents). For emergency medical needs, patients can access emergency departments (EDs) and ambulance services. These services are highly vulnerable to excessive strain due to rising, unpredictable demand and limitations in patient flow across the system. The workforce operates in time-critical situations, often with limited resources, which can lead to staff burnout, low job satisfaction and retention and poor health. The organisation of services and their workforce continues to evolve in response to local and national pressures and varies considerably across the UK, where there are four distinct, publicly funded healthcare systems managed separately in each country. This makes it difficult to describe and compare services within and across regions and understand the impact of workforce organisation on service delivery, staff well-being and patient care. This study aims to develop a comprehensive understanding of the range and types of UK UEC services, the relative experiences of the workforce and the available workforce data.
This mixed-methods study includes two components, integrated through an explanatory sequential design. Study 1 will use data on NHS service availability and direct enquiry to map UEC services and populate a structured database, which will facilitate the generation of a UEC typology of the range and types of services and regional variation across the UK. Multiple case studies will be conducted in a subset of services using qualitative interviews (n=136–220) with service leaders (n=3–5), workforce (n=10–12), and patients or carers (n=4–5), as well as document analysis where relevant, in each service of interest (n=8–10). Study 2 will create a metadata catalogue of workforce data and produce descriptive summaries of key metrics (eg, staffing levels and skill mix). The study will be supported by our Community Inclusion and Engagement (CIE) panel and Patient and Public Advisory Group (PPAG) to ensure relevance, inclusivity and impact.
This study received ethical approval from Yorkshire and The Humber - Sheffield Research Ethics Committee (04/08/2025, IRAS ID: 357276, REC Reference: 25/YH/0125) and HRA and Health and Care Research Wales approval (12/08/2025). Data collection poses minimal risk, informed consent will be obtained, and participants may withdraw at any time. Dissemination will follow knowledge mobilisation principles to maximise impact. We will build on our existing networks and work with our CIE panel and PPAG to tailor study outputs to different audiences. The outputs will improve understanding of the variation in how UEC services and workforces are organised across the UK, as well as the type and format of available workforce data, and provide benchmarks for future research.
Research Registry (REF: researchregistry11555; https://www.researchregistry.com/register-now/%23home/registrationdetails/68d402672341e502cd0ce888/)
High-arched feet affect approximately 10%–15% of the general population. Although the relationship between plantar pressure and bilateral symmetry is well studied, there is limited evidence regarding the use of Symmetry Index and pressure platforms. The objective of the study is to compare dynamic foot pressures and Symmetry Index during gait between subjects with Pes Cavus and subjects with normal feet. The analysis of asymmetric pressure patterns could benefit from studies that compare dynamic foot pressures and Symmetry Index values in subjects with high-arched feet and normal feet. This analysis can promote better clinical understanding of gait alterations and help solve biomechanical problems that may lead to pathologies, as well as prevent and treat them. A descriptive case–control study was developed from October to December 2024 with 82 participants, 41 with Pes Cavus and 41 normal feet and 71 females of 25.52 ± 5.99 years through a consecutive nonrandom technique. For this study, a baropodometry platform (Neo-Plate, Herbitas) was used, which acquired dynamic gait with a 2-step protocol. The inclusion criteria regarding the selection of subjects were age 18–65 years; if both cavus feet, Navicular Drop Test (NDT) < 9 mm; neutral feet and no lower limb problem or surgery. Regarding SI use, the PC demonstrated to have large asymmetries compared to the control group. Left anterior pressure was lower (44.93% ± 4.59% vs. 48.60% ± 3.43%, p = 0.014), left posterior pressure was higher (55.07% ± 4.58% vs. 51.40% ± 3.43%, p = 0.013) and the left Initial Contact Phase (ICP) was prolonged (123.34 ± 51.75 ms vs. 91.30 ± 31.86 ms, p = 0.036); right medial pressure was higher (58.18% ± 4.08% vs. 53.77% ± 4.79%, p = 0.034). SI measurements were greater in normal foot group than in the PC group with SI 94.15% ± 5.00% versus 93.75% ± 4.59%, p = 0.001, respectively; ICP and lateral SI were both p = 0.001. Findings confirmed that subjects with cavus feet tend to present greater alterations in bilateral symmetry, specifically posteromedial pressure movements and altered gait phases, which are indicative of more probability of future injuries. For this reason, pressure platforms are excellent tools for understanding, analysing and therefore applying the correct treatment according to the SI.
To explore how children, caregivers and healthcare providers experience shared decision-making in real time within an interdisciplinary paediatric feeding clinic in multicultural Singapore.
A qualitative ethnographic approach was used.
Data collection involved one-time participant observations of interdisciplinary feeding clinic consultations, observations of healthcare providers-only debrief and follow-up interviews with caregivers. Data were collected from July 2024 to November 2024. Participants included caregivers, healthcare providers and otherwise well children presenting with feeding difficulties. Fieldnotes, including observational matrices, reflexive journals and interview transcripts, were analysed thematically using Braun and Clarke's six-step process for thematic analysis.
Twenty observations and 11 interviews were conducted. Four themes were identified: (1) Centring the child: building trust and respect; (2) Tensions and teamwork: negotiating expertise and expectations; (3) Feeding across cultures; and (4) Parenting under pressure: the social context of feeding choices.
In an interdisciplinary feeding clinic, shared decision-making extends beyond the clinical encounter, reflecting relational, cultural and structural realities. The feeding clinic modelled effective shared decision-making through child-centred care practices, balancing biomedical expertise with lived experiences, actively engaging caregivers and codesigning culturally responsive and sustainable feeding strategies with the family. However, divergent perceptions of what problematic feeding entails, caregivers' hesitancy in taking on an active role in consultations, and the external pressures caregivers contended with constrained this process. These findings highlight the need for inclusive, culturally responsive care models and more caregiver support interventions that acknowledge the full complexity of feeding care.
Nurses, with their central role in relational and communicative care, are uniquely positioned to bridge tensions between medical paternalism and collaborative, family-centred approaches. By facilitating trust, clarifying goals and supporting caregiver participation in feeding decisions, they play a critical role in advancing child health outcomes while strengthening caregiver agency within multicultural healthcare systems.
This study revealed how cultural, familial and systemic pressures shape caregiving practices, often constraining caregiver participation and shared decision-making in clinical encounters. Shared decision making in an interdisciplinary feeding clinic comprised of child-centred care practices, balancing biomedical expertise with lived experiences, actively engaging caregivers and codesigning culturally responsive and sustainable feeding strategies with the family. This study expounds on the potentially critical role nurses could play within the multidisciplinary team to negotiate expectations, foster caregiver agency and contribute to culturally responsive, family-centred feeding care.
The reporting of this study is guided by the Standards for Reporting Qualitative Research (SRQR).
This study did not include patient or public involvement in its design, conduct or reporting.
Total alloplastic replacement of the temporomandibular joint (TMJ) is a viable treatment option for severe TMJ disorders (TMDs) unresponsive to conservative approaches, as well as for reconstruction of congenital or acquired TMJ defects. However, clinical data on indications, outcomes, complications and long-term effects remain limited, and no global registry currently exists. This study aims to address this gap by establishing an international registry to collect data from patients undergoing total alloplastic TMJ replacement systematically. The registry will document clinical indications and disease progression, explore relationships between treatments, outcomes and quality of life, identify predictors of favourable outcomes and inform future research.
This international, prospective, multicentre, observational registry will enrol approximately 200 patients with TMD requiring total alloplastic TMJ replacement, with follow-up lasting up to 5 years postoperatively. The data collected will include underlying disease, treatment details, functional outcomes, patient-reported outcomes and procedure-related adverse events. The registry will also monitor patients who decline surgery and record their reasons. All treatments will adhere to the standard of care at each participating centre.
Ethics approval was obtained from the responsible ethics committee (EC) at each participating site prior to TMJ surgery. All patients will be enrolled following an informed consent process approved by the relevant EC. Study results will be disseminated through peer-reviewed publications.
Approving ECs include: Krishnadevaraya College of Dental Sciences and Hospital EC, KCDS/Ethical Comm/54/2022–23; Ethikkommission Nordwest- und Zentralschweiz, 2019–02387; University of Belgrade School of Dental Medicine EC, 36/19; National Videnskabsetisk Komité, 2401881; University of KwaZulu-Natal Biomedical Research EC, BREC/00001592/2020; Etikprövningsmyndigheten, 2019–04477; Ethikkommission Medizinische Hochschule Hannover, 8660_BO_K_2019; Ethik-Kommission an der Medizinischen Fakultät der Universität Leipzig, 080/21-lk; Comité de Ética de la Investigación con Medicamentos Hospital Universitario 12 de Octubre, 19/392; Landesärztekammer Rheinland-Pfalz EC, 2025–18012-andere Forschung/nachberatend; Local Ethical Committee at National Medical and Surgical Centre named after NI Pirogoov, LEC meeting 5; Ethikkommission bei der LMU München, 19–589; Komisja Bioetyczna przy Warmiłsko-Mazurskiej Izbie Lekarskiej w Olsztynie, 12/2021; De Medisch Ethische Toetsings Commissie Erasmus MC, MEC-2019–0696 and Comissão Nacional de Ética em Pesquisa, 3.825.711.
Urgent and emergency care (UEC) systems in England face unprecedented pressures, with record accident and emergency attendances, persistent breaches of ambulance response targets and poorer outcomes for time-sensitive conditions. National UEC recovery plans have introduced multiple innovations—such as same-day emergency care, virtual wards and specialty hubs—to manage these pressures and improve patient flow. Rural coastal areas are particularly vulnerable to excessive demand due to higher levels of deprivation, older populations with complex health needs, seasonal surges that generate unpredictable demand and challenges in attracting and retaining staff. Following the Chief Medical Officer’s 2021 Annual Report, funding research and developing bespoke solutions to manage UEC demand and address geographical disparities has been recognised as a national priority. The Elevate study responds to this priority by identifying and evaluating innovative models of UEC in rural coastal communities in England.
The Elevate study is a 30-month, mixed-methods evaluation that comprises three interlinked work packages: (1) National service mapping—outlining provision of innovative models of UEC in rural coastal areas of England. This will be developed through document review and interviews with regional and national service leaders. (2) Quantitative analysis—quasiexperimental and longitudinal approaches will use National Health Service (NHS) England’s Emergency Care Data Set and linked routine NHS datasets to evaluate the impact of UEC models on health and process outcomes. Standard and bespoke metrics will be developed and used to assess performance. (3) Qualitative case studies—up to 12 case studies of UEC models in rural coastal communities. Interviews with patients and staff and non-participant observation will explore how and why different UEC models influence patient experience, clinical outcomes, resource use and the workforce. Findings will be integrated using the Consolidated Framework for Implementation Research to identify components of UEC models that are effective, scalable and sensitive to local context,
Ethical approval for qualitative components was granted by the North of Scotland Research Ethics Committee (25/NS/0099). Dissemination will include peer-reviewed publications, policy briefs, creative media and community engagement activities to ensure findings are communicated inclusively and effectively to policymakers, health and social care practitioners and the public.
Research Registry (researchregistry11126).
To explore the experiences and perceptions of Singaporean parents in managing feeding difficulties among children with developmental disabilities.
A descriptive qualitative study design was used.
Twenty parents were recruited via convenience sampling from a paediatric feeding clinic in a public hospital in Singapore between July and October 2024. One-to-one interviews were conducted using a semi-structured interview guide. Thematic analysis was used to analyse the data.
Four themes were identified: (1) Feeding as a ‘guessing’ game; (2) mutual understanding within the family and community; (3) beliefs regarding developmental disabilities and feeding difficulties; and (4) challenges in accessing adequate support. There were a total of nine subthemes supporting these themes.
This study revealed that parents of children with developmental disabilities faced challenges in adjusting to their child's feeding preferences, dealing with conflicting views on feeding practices among caregivers, and accessing adequate support. Parents also valued instrumental support from grandparents and domestic helpers, as well as emotional support from online peers. Additional research and targeted interventions are needed to better support parents of children with developmental disabilities in managing feeding difficulties.
Policies should facilitate the provision of feeding-specific resources, treatment, and education for parents. Additionally, healthcare providers should proactively assess feeding-related concerns and address misconceptions to enhance parental awareness of feeding difficulties and how they can improve the feeding practices of their children with developmental disabilities. Future research should obtain a more in-depth understanding of how differing beliefs in feeding difficulties between parents can impact the child's developmental outcomes, as well as the support and resources that may address feeding needs in these children.
This study followed the reporting guidelines outlined by the Consolidated criteria for Reporting Qualitative (COREQ) research checklist.
This study did not include patient or public involvement in its design, conduct, or reporting.
To examine whether self-reported thriving at work is associated with biomarkers of stress, inflammation, neuroplasticity and neurodegeneration in nurses.
A cross-sectional study.
An online questionnaire measuring thriving at work was administered to nurses in a teaching hospital in Michigan, U.S. over 5 weeks in 2024. A subsample of 100 questionnaire respondents provided blood samples for biomarker analysis. Multiple regression was used to identify self-reported and biomarker predictors of nurse thriving. Cluster analysis was used to distinguish between nurses with high and low levels of thriving based on a combination of self-report and biomarker data.
Higher self-reports of individual and work-related resources predicted higher thriving. Cortisol, a stress hormone, was significantly and inversely associated with thriving. No blood-based biomarkers of inflammation or neuroplasticity predicted thriving. Neurofilament light chain, a marker of neurodegeneration, was not a direct predictor but modified the effects of interpersonal and work resources on thriving.
Biological markers do play a role in nurses' thriving at work and may contribute important complementary information to that provided by nurse self-reports.
Nurses thrive in a work situation characterised by positive reports of individual, interpersonal and work resources and lower levels of stress. Efforts to enhance thriving could positively impact nurses' well-being and conditions for providing high-quality patient care.
This study addressed the question of whether self-reported thriving at work among nurses is reflected in biomarkers of stress, inflammation, and neurocognitive health. A profile of high self-reported work-related resources and low cortisol distinguished higher levels of nurses' thriving from lower levels. Organisational efforts to enhance nurses' thriving can positively impact nurses' health, their work environment, and patient care.
We followed the STROBE checklist in reporting this study.
No Patient or public contribution.
To develop and evaluate a questionnaire for measuring factors that contribute to thriving at work among nurses.
A cross-sectional study.
An online questionnaire was administered in March 2024 to nurses in a community teaching hospital in Michigan, US. Questionnaire content was based on a literature search and was pilot tested among nursing professionals within the hospital system. Questionnaire factor structure was examined with exploratory and confirmatory factor analyses with split-half sample validation.
Based on exploratory and confirmatory factor analysis, a three-factor solution presented the best model, with factors comprised of 15 items measuring individual resources (3 items), work resources (6 items) and interpersonal aspects of the nursing work environment (6 items). Reliability estimates for all three factors exceeded 0.80, indicating good internal homogeneity. The questionnaire also demonstrated acceptable split-half validity and reliability.
The questionnaire presented here provides a potentially useful tool for measuring and evaluating thriving at work among nurses.
A better understanding of factors that enhance nurse thriving would lay the foundation for targeted interventions aimed at improving the nursing work environment and nurse well-being. Enhancing nurse thriving could have a potentially positive impact on patient care.
This study addressed the need to understand factors that contribute to thriving in nursing work. The questionnaire that was developed revealed a three-factor solution measuring individual nurse resources, work environment resources and work interpersonal resources. By measuring thriving among nurses, hospitals and other healthcare organisations are taking an important first step in identifying interventions to enhance the nursing work environment, nurse well-being and potentially the quality of patient care.
We followed the STROBE checklist in reporting this study.
No patient or public contribution.
To explore the experiences of Singaporean parents managing care for children with underlying chronic medical conditions and Paediatric Feeding Disorders.
Descriptive qualitative.
Data were collected via semi-structured interviews from 4 July 2024 to 4 October 2024. Fourteen English-speaking Singaporean parents were recruited via purposive sampling at an outpatient paediatric feeding clinic in a public tertiary hospital in Singapore. Data were thematically analysed using Braun and Clarke's six-step inductive approach.
Three themes and nine sub-themes were identified. The three themes were: (1) Caregiver's Compass: From Survival to Stability, (2) Navigating Emotional Terrain in Caregiving, (3) Feeding Suck-cess: Systemic, Medical, and Societal Challenges.
The findings reflected the experiences of parents managing Paediatric Feeding Disorders. Parents transitioned from survival-focused to development-focused care, balancing medical guidance with parental instinct while navigating emotional strain, gendered caregiving roles, fragmented healthcare, and cultural conflicts.
Nurses are vital in supporting parents by recognising their lived experiences and caregiving challenges. By incorporating family-centered interventions, nurses can foster shared-decision making and provide culturally sensitive care. Providing tailored education and collaboration with multidisciplinary teams will enable nurses to empower caregivers with essential knowledge and resources, such as accessible and culturally attuned digital health solutions.
This study contributes to the limited body of qualitative research on parents of chronically ill children with Paediatric Feeding Disorders in Singapore and underscores the need for culturally sensitive, multidisciplinary support models to address the manifold responsibilities parents face in managing feeding issues. These insights may have broader implications for diverse populations managing similar caregiving complexities, informing family-centered interventions and healthcare policies that better support parents managing chronically ill children.
COREQ checklist.
This study did not include patient or public involvement in its design, conduct, or reporting.
To explore the perceptions and experiences of parents caring for children with paediatric feeding disorders requiring feeding tubes (PFD-T).
A descriptive qualitative approach was adopted in this study.
Using purposive sampling, 12 parents were recruited from paediatric inpatient wards and the outpatient paediatric feeding clinic at a tertiary public hospital in Singapore. Data collection was done from July to December 2024. Semi-structured one-on-one interviews were conducted with the parents (fathers or mothers) until data saturation. Thematic analysis was used to identify themes from the interview content.
A total of three themes and six subthemes were identified, encapsulating the challenges experienced by parents with caregiving and feeding tube management, as well as the sources of support they had. The themes are: (1) A sense of community, (2) Grieving over the loss of normalcy and (3) Facing the unknown.
Parents in this study felt supported being in a community of other parents with children who have PFD-T. It enabled them to gain valuable information and offered them a space where they felt understood. At the same time, they expressed feelings of guilt and isolation, as the caregiving demands led to limited capacity to cater to or interact with other loved ones. Additional challenges parents faced included transitioning between types of feeding tubes and insufficient support from healthcare professionals.
Ethical approval was obtained from the National Health Group Domain Specific Review Board (DSRB 2024/00064) on 8 May 2024.
This study followed the reporting guidelines outlined by the COnsolidated criteria for REporting Qualitative (COREQ) research checklist.
This study did not include patient or public involvement in its design, conduct, or reporting.
FreshRSS 