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Exploring Parents' Experiences and Perceptions of Caring for Children With Feeding Difficulties and Developmental Disabilities: A Descriptive Qualitative Study

ABSTRACT

Aim

To explore the experiences and perceptions of Singaporean parents in managing feeding difficulties among children with developmental disabilities.

Study Design

A descriptive qualitative study design was used.

Methods

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.

Results

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.

Conclusion

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.

Implications

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.

Reporting Method

This study followed the reporting guidelines outlined by the Consolidated criteria for Reporting Qualitative (COREQ) research checklist.

Public Contribution

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

Community Dwelling Adults’ Lived Experiences of Participating in Death Cafés: A Phenomenological Study With Photovoice

ABSTRACT

Aim

To explore community dwelling adults' lived experiences of participating in death café in Singapore.

Design

A descriptive phenomenological study with Photovoice.

Methods

A purposive sample of community dwelling adults who participated in a community-based death café was recruited for this study. Data was collected through online individual semi-structured interviews. The Colaizzi's six-step descriptive phenomenological analysis was conducted for data analysis.

Results

Twenty community dwelling adults who participated in a death café were recruited. Participants' experiences of the death café were expounded in four themes: appeals of attending death cafés, enabling features of death café, engaging in die-logues, and perceived impacts of death café on everyday lives. The participants were attracted to death cafés for various reasons including curiosity and grief. A comfortable environment, accompanied by open dialogues and refreshments, was credited as enablers for death conversations. Through these ‘die-logues’, the participants had a deeper understanding of death and began engaging in advance planning.

Conclusions

Death cafés provide a supportive environment for individuals to engage in death-related conversations that may not easily occur in daily life. By engaging in conversations about mortality within death cafés, participants are encouraged to take proactive steps towards advance planning.

Implications for the Profession and/or Patient Care

Findings from this study can guide the development of community-based interventions by highlighting the essential components required for a death café tailored to the Asian context.

Impact

This study describes the community dwelling adults' lived experiences of participating in a death café. The findings from this study underscore the role of informal conversations about death as a tool to promote population health based palliative care initiatives such as overcoming death taboos and stimulating advance care planning among community dwelling adults.

Reporting Method

The Consolidated Criteria for Reporting Qualitative Studies was used.

Patient and Public Contribution

Community-dwelling adults participated in the interviews.

Secrets and Their Consequences in Heathcare: A Scoping Review of Worker Experiences

ABSTRACT

Aims

To explore current knowledge of the nature of secrets healthcare consumers reveal to healthcare workers and the impact on the healthcare worker experience resulting from these private disclosures.

Design

Scoping review.

Data Sources

Eight electronic databases were searched for studies published between 1980 and 2025 that met the inclusion criteria.

Review Methods

Arksey and O'Malley's five-step methodological framework for scoping reviews guided this review. Petronio's Communication Privacy Management theory also informed the inclusion criteria.

Results

A total of 11,812 records were identified, and 76 studies were included. Four types of secrets emerged: (1) Medical concerns, (2) Sexuality, (3) Abuse and (4) Life choices and decisions. Healthcare workers viewed the disclosure experience either as a privilege or a burden. Healthcare workers constructed strategies to avoid or facilitate disclosure and sought out trusted confidants for personal support throughout the experience. The review highlights the vulnerability of both the healthcare consumer and the healthcare worker, and the potential for negative health outcomes following a private disclosure.

Conclusion

Healthcare consumers make private disclosures to healthcare workers. Further research is needed to construct evidence-based clinical practice guidelines to support healthcare workers in facilitating and managing private disclosures.

Impact

Healthcare consumers may disclose secrets of sexuality, medical concerns, abuse, and life decisions and choices to healthcare workers. Limited studies report on the impact of these difficult conversations. The findings of this review can inform healthcare practice and further research.

Patient or Public Contribution

Not applicable.

What Can We Learn From Nurses' Experiences of Digital Technology Implementation During the COVID‐19 Pandemic? A Qualitative Study

ABSTRACT

Aim

To explore nurses' experiences of the adoption, implementation, and use of digital technologies during the Covid-19 pandemic in the UK.

Design

A qualitative descriptive study.

Methods

A qualitative study using two data sources: qualitative responses from 55 respondents to an online survey, and data from in-depth interviews with 21 individuals. The NASSS framework was used to guide data collection and analysis. Data were analysed using framework analysis.

Results

Respondents reported using a variety of technologies including video conferencing applications, telemonitoring, systems to support care management and telecommunication systems. The analysis identified a range of reasons why technology had been introduced into services, and a recognition of its value in a situation where otherwise care may not have been able to continue. During the pandemic nurses were expected to change their work practices very rapidly, and we identified situations where organisational infrastructure either supported this effectively or created additional burdens for the nurses' work.

Conclusion

Nurses had to adapt to new ways of working rapidly, with digital technology being one of the primary means through which communication and care were delivered. The Covid-19 pandemic provided a unique set of circumstances where layers of governance and many of the existing barriers to technology introduction were reduced.

Implications for the Profession

It is important to learn from these experiences, to understand how to sustain innovations that have proved to be successful, as well as the factors that enable nurses to work effectively in this new environment.

Reporting Method

This study adheres to the guidance for publishing qualitative research in informatics.

Patient or Public Contribution

A public contributor was involved from the beginning of the study conceptualization. They had input into the study approach, were part of the team that acquired the funding for the study and gave input at various stages into the processes for data collection, analysis and writing up the findings. The public contributor is a co-author on this paper and has been involved in the writing and editing of this report.

Cohort profile: baseline characteristics and design of the McMaster Monitoring My Mobility (MacM3) study - a prospective digital mobility cohort of community-dwelling older Canadians from Southern Ontario

Por: Beauchamp · M. · Kirkwood · R. · Cooper · C. · McIlroy · W. E. · Van Ooteghem · K. · Beyer · K. B. · Richardson · J. · Kuspinar · A. · McNicholas · P. D. · Newbold · B. · Scott · D. · Raina · P. · Fang · Q. · Gardner · P. · Zargoush · M. · Ma · J. · OHoski · S. · Rafiq · T. · MacM3 Investi
Purpose

The McMaster Monitoring My Mobility (MacM3) study aims to understand trajectories of mobility decline in later life using multisensor wearable technology. To our knowledge, MacM3 is the first major cohort to combine accelerometry and a Global Positioning System (GPS) to track real-world mobility in community-dwelling older adults.

Participants

Between May 2022 and May 2024, MacM3 recruited 1555 community-dwelling older adults (mean age 73.9 years, SD=5.5) from Hamilton and Toronto, Ontario. Of the cohort, 68.4% were female, 62.4% married/partnered, 75.3% had post-secondary education and 62.9% had≥3 comorbidities. Most were Canadian born (69.4%) and white/Caucasian (88.0%), with greater ethnocultural diversity observed at the Toronto site.

Findings to date

At baseline, 56.7% of participants reported no mobility limitations, 15.9% had preclinical limitations and 27.4% had minor mobility limitations. Mean gait speed for the total sample was 1.23 m/s, with a mean Timed Up and Go time of 9.4 s and a 5x sit-to-stand time of 13.0 s. A total of 1301 participants had valid wrist-worn device data, and 1008 participants who agreed to wear the thigh-worn device had valid data (≥7 days with ≥10 hours of wear per day). Step count data (n=1008) revealed a mean of 8437 steps per day (SD=2943), with 5073 steps in the lowest quartile and 12 303 steps in the highest.

Future plans

Ongoing work aims to develop predictive models of mobility decline by integrating wearable, clinical and environmental data. Pipeline enhancements will enable GPS/inertial measurement unit fusion to explore mobility-environment interactions and support ageing-in-place tools.

Beyond the Feed: A Descriptive Qualitative Study of Parental Experiences in Managing Paediatric Feeding Disorders in Children With Chronic Conditions

ABSTRACT

Aim

To explore the experiences of Singaporean parents managing care for children with underlying chronic medical conditions and Paediatric Feeding Disorders.

Design

Descriptive qualitative.

Methods

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.

Results

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.

Conclusion

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.

Implications for Patient Care

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.

Impact

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.

Reporting Method

COREQ checklist.

Patient or Public Contribution

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

Clinical practice guidelines for the care of people experiencing chronic primary pain: protocol for a systematic review with interpretation against an established chronic pain care priority framework

Por: Briggs · A. M. · Siegfried · N. · Waller · R. · OConnell · N. E. · Romero · L. · Klem · N.-R. · Ampiah · P. K. · Belton · J. L. · Blyth · F. M. · De Morgan · S. · Lord · S. M. · Nicholas · M. · OSullivan · P. B. · Shakya · A. · Smith · A. J. · Slater · H.
Introduction

Most clinical practice guidelines (CPGs) for assessing and managing people’s chronic pain focus on specific pain conditions, body sites or life course stages. This creates complexity for clinicians making care choices in the absence of a diagnosis and/or where a person experiences more than one pain condition. Specific to this context is the ICD-11 classification of chronic primary pain where an experience of pain cannot be better accounted for by another condition. CPGs for chronic primary pain, agnostic to condition or body part, may support clinicians towards best pain care since many of the principles of person-centred chronic pain care are transdiagnostic. The two aims of this systematic review are to (1) identify and appraise CPGs for chronic primary pain, relevant across the life course and (2) map the CPG content against a pain care priority framework to evaluate the extent to which the CPG content aligns with the priorities of people with lived chronic pain experience.

Methods and analysis

We will systematically search nine scholarly databases, the Epistemonikos database and international and national guidelines clearinghouses. CPGs published within 2015–2025, in any language, that offer recommendations about assessment and/or management of chronic primary pain for people of any age, excluding hospitalised inpatients or institutionalised populations, will be included. Pairs of reviewers will independently screen citations for eligibility and appraise CPG quality and implementation potential using the Appraisal of Guidelines for Research and Evaluation (AGREE)-II and the AGREE-Recommendations Excellence tools, respectively. Data extraction will include the citation and scope characteristics of each CPG, methods used to develop recommendations, verbatim recommendations, guiding principles or practice information and narrative excerpts related to the GRADE Evidence-to-Decision (EtD) considerations (or equivalent). We will use the PROGRESS-PLUS framework as a checklist to identify whether determinants of health equity were considered by guideline developers. CPG recommendations will be organised according to common topics and categorised in a matrix according to strength and direction. Qualitative content analysis will be used to synthesise excerpts relating to GRADE EtD considerations (or equivalent), and we will map extracted data against an established chronic pain care priority framework to determine the extent to which the CPGs align with values and preferences of people with lived experience. Interpretation will be informed by an interdisciplinary Advisory Group, including lived experience partners.

Ethics and dissemination

Ethical approval is not required for this systematic review. Results will be disseminated through publication in an open-access peer-reviewed journal, through professional societies, and integrated into education curricula and public-facing resources. Reporting will be consistent with the Preferred Reporting Items for Systematic Reviews and Meta-Analysis (PRISMA) statement.

PROSPERO registration number

CRD420251000482.

Grief, Uncertainty and Community: A Qualitative Study on Parental Experiences of Paediatric Feeding Disorders and Feeding Tube Use in Singapore

ABSTRACT

Aim

To explore the perceptions and experiences of parents caring for children with paediatric feeding disorders requiring feeding tubes (PFD-T).

Study Design

A descriptive qualitative approach was adopted in this study.

Methods

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.

Results

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.

Conclusion

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.

Trial and Protocol Registration

Ethical approval was obtained from the National Health Group Domain Specific Review Board (DSRB 2024/00064) on 8 May 2024.

Reporting Method

This study followed the reporting guidelines outlined by the COnsolidated criteria for REporting Qualitative (COREQ) research checklist.

Public Contribution

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

Urine Metabolites as Indicators of Chronic Pain and Related Symptoms in Active-Duty Service Members: A Secondary Data Analysis of a Pragmatic Clinical Trial With SMART Design

imageBackground Chronic pain is a major cause of distress and disability, and biomarkers may aid in the assessment and treatment of it. Urine metabolites may be valuable bioindicators that can provide biological insight regarding chronic pain. Objectives To investigate the relationship between a multimarker composite measure of metabolites and patient-reported outcomes scores in adults with chronic pain, using data from a pragmatic clinical trial with a sequential, multiple-assignment randomized trial design. Methods Self-reported measures and urine samples from 169 active-duty service members with chronic pain were collected. Urine was analyzed using a preestablished panel of metabolites, including four previously identified biomarkers of pain: kynurenic acid, pyroglutamic acid, ethylmalonic acid, and methylmalonate. Multivariable linear regression models—adjusted for participant characteristics such as age and sex—were used to cross-sectionally examine the relationship between 11 patient-reported outcomes (fatigue, sleep-related impairment, anxiety, depression, anger, pain catastrophizing, physical function, pain interference, satisfaction with participation with social roles, pain intensity, and pain impact score) and the four urine metabolites both individually and as a composite (urine metabolite pain indicator, or UMPI). Given the study’s small sample size and exploratory nature, a significance threshold of p ≤ .10 was used for all analyses. Results The UMPI showed statistically significant associations with five self-reported measures (fatigue, anxiety, depression, physical functioning, and pain impact score); adjusted Pearson correlations ranged from .18 to .25. Individual metabolite analyses supported these findings, with all relationships between individual metabolites and self-reported measures showing positive associations. Kynurenic acid and ethylmalonic acid showed the strongest associations, each having statistically significant relationships with four individual self-reported measures, while pyroglutamic acid had statistically significant relationships with three self-reported measures and methylmalonate with none. The UMPI demonstrated feasible reliability. Discussion Our finding of associations between the UMPI and components of the self-reported measures supports the development of the UMPI and these four urine metabolites as biomarkers for chronic pain outcomes. Further research is planned and will be essential for establishing mechanistic insight and guiding biomarker development within the context of pain management.

Longitudinal Fatigue Symptoms and Inflammatory Markers in African American Adults With Hypertension and Obstructive Sleep Apnea

imageBackground There is a dearth of research inclusive of African American adults living with obstructive sleep apnea (OSA) despite differences in symptom presentations compared to non-Hispanic White patient populations. Less is known regarding the potential effect of comorbidities, including hypertension, on commonly reported symptoms, such as fatigue, and their association with inflammatory biomarkers. Objective This longitudinal pilot study aimed to characterize fatigue symptom presentations among African American adults newly diagnosed with OSA and discern peripheral blood analytes linked to symptoms while accounting for co-occurring hypertension. Methods African American adults newly diagnosed with OSA with and without co-occurring hypertension were approached by study staff and recruited following their diagnostic visit with sleep medicine clinicians at two health systems and followed over 6 months after commencing continuous positive airway pressure treatment. Patient-Reported Outcomes Measurement Information System Fatigue surveys and plasma were collected every 3 months from 29 participants. Mixed-effects models examined changes in fatigue symptom presentations over time while accounting for plasma-based analytes and hypertension status. Results Despite higher fatigue symptom severity upon diagnosis, participants with co-occurring hypertension reported greater improvements in fatigue scores after commencing continuous positive airway pressure treatment for up to 6 months than those without hypertension. Inverse correlations were observed between fatigue scores, C-reactive protein, matrix metalloproteinase-8, and osteoprotegerin analyte levels among participants with/without hypertension. Across all participants, changes in interleukin-6 were associated with changes in fatigue scores in the first 3 months after diagnosis. Discussion Findings indicate that hypertension is linked to increased fatigue upon diagnosis of OSA in this sample of African American adults. Fatigue in persons with hypertension improved after treatment in this sample. These hypothesis-generating findings can inform future interventional studies aimed at improving fatigue among persons with OSA while leveraging markers linked to fatigue symptom severity as potential objective markers of improvements. Further research on the role of inflammatory markers, such as IL-6, on fatigue symptom presentations is warranted in persons with OSA.

Reliability and Validity of Measures Commonly Utilized to Assess Nurse Well-Being

imageBackground A healthy nursing workforce is vital to ensuring that patients are provided quality care. Assessing nurses' well-being and related factors requires routine evaluations from health system leaders that leverage brief psychometrically sound measures. To date, measures used to assess nurses' well-being have primarily been psychometrically tested among other clinicians or nurses working in specific clinical practice settings rather than in large, representative, heterogeneous samples of nurses. Objectives This study aimed to psychometrically test measures frequently used to evaluate factors linked to nurse well-being in a heterogeneous sample of nurses within a large academic health system. Methods This cross-sectional, survey-based study used a convenience sample of nurses working across acute care practice settings. A total of 177 nurses completed measures, which included the Professional Quality of Life, the short form of the Professional Quality of Life measure, the two-item Connor–Davidson Resilience Scale, the five-item World Health Organization Well-Being Index, the Secondary Traumatic Stress Scale, and the single-item Mini-Z. Internal reliability and convergent validity were assessed for each measure. Results All the measures were found to be reliable. Brief measures used to assess domains of well-being demonstrated validity with longer measures, as evident by significant correlation coefficients. Discussion This study provides support for the reliability and validity of measures commonly used to assess well-being in a diverse sample of nurses working across acute care settings. Data from routine assessments of the nursing workforce hold the potential to guide the implementation and evaluation of interventions capable of promoting workplace well-being. Assessments should include psychometrically sound, low-burden measures, such as those evaluated in this study.
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