Conectar
To understand the social representations of bedside milk expression (BME) among mothers of preterm newborns in neonatal intensive care units (NICUs).
Qualitative descriptive study.
The study was conducted from July to August 2024 in two NICUs of a referral maternity hospital in Fortaleza, Brazil. Nineteen mothers of hospitalised premature newborns participated. Semi-structured interviews were conducted and subjected to thematic content analysis.
Mothers perceived BME as a meaningful act of protection and bonding, though some were unfamiliar with the practice. Emotional ambivalence was common, shaped by prior breastfeeding experiences and the context of prematurity. Discomfort related to privacy and shared spaces was noted. Support from healthcare professionals was essential to promote understanding and adherence.
Social representations of BME are shaped by emotional, social and institutional experiences. Anchored in prior breastfeeding experiences and cultural meanings of maternal care, the practice is objectified through both gestures of affection and tangible barriers.
Healthcare professionals, particularly nurses, should receive training to support mothers in BME. Structural improvements, privacy and emotional support are essential for fostering maternal autonomy and confidence.
This study highlights the barriers to BME, emphasising the role of healthcare support and the need for better infrastructure, privacy and training to enhance maternal confidence and breastfeeding.
The study followed the Consolidated Criteria for Reporting Qualitative Research checklist.
None.
This paper highlights the pivotal role of healthcare professional support in overcoming barriers to BME and promoting breastfeeding practices.
Fresh breast milk is considered the gold standard for reducing complications and improving survival in preterm infants. BME is recommended as an effective strategy to ensure the availability of fresh breast milk. Mothers' social representations of this practice remain underexplored within the neonatal intensive care context.
Explores mothers' social representations of BME in NICUs, addressing a significant gap in qualitative research. Reveals how emotional, social and institutional factors shape mothers' perceptions, motivations and challenges related to BME. Highlights the need for targeted professional support, improved infrastructure and privacy to enhance maternal autonomy and adherence to milk expression practices.
Healthcare professionals, particularly nurses, should receive specialised training to provide technical guidance and emotional support, enhancing mothers' confidence and autonomy in BME. Improving infrastructure and ensuring privacy in NICUs are crucial to creating supportive environments that facilitate milk expression and strengthen maternal–infant bonding. Institutional policies should integrate maternal-centred strategies to support breastfeeding continuity and promote humanised neonatal care.
To describe the implementation determinants for care coordination interventions in a hospital context.
Systematic review.
This review was guided by the Consolidated Framework of Implementation Research (CFIR), assessed for quality using the Mixed Methods Appraisal Tool and reported with the PRISMA guidelines.
CINHAL Complete, EMBASE, MEDLINE Complete, PsychINFO (between January 1, 2013, and December 31, 2022, and updated May 09, 2024) and a manual reference list search of all included studies.
The search returned 5614 articles after duplicates were removed. After title and abstract screening, 264 articles underwent full-text review. Sixteen studies (15 care coordination models) met the inclusion criteria. The CFIR inner setting domain and the implementation process domain were the most prominent domains and ‘Partnerships & Connections’, ‘Work Infrastructure’, ‘Capability’ and ‘Reflecting and Evaluating’ subdomains emerged as important determinants across the included studies.
Inconsistent findings relating to care coordination outcomes are likely to be substantially influenced by the complexity and heterogeneity of the interventions and variations in implementation and contextual factors. Intra- and inter-organisational relationships were important to connect previously disconnected parts of the health system and were facilitated by experienced care coordinators. Continual improvement was also important to increase fit with contextual factors. More high-quality studies are needed to identify commonalities and provide generalisable principles and characteristics associated with high-performance implementation.
Review findings will provide practitioners, policymakers, and researchers with a comprehensive synthesis of evidence underpinning implementation of effective community care coordination from hospital settings.
These review findings will inform the effective implementation of care coordination interventions in a hospital context for patients with complex multimorbidity.
Preferred Reporting Items for Systematic reviews and Meta-Analysis.
PROSPERO Registration: CRD42022376642.
No patient or public Contribution.
Osteoporosis requires long-term self-care engagement, yet little is known about how individuals experience and manage self-care in everyday life. Understanding these experiences is essential to inform tailored nursing interventions. The objective of the study was to explore and describe the experience of self-care maintenance, monitoring, and management in people with osteoporosis.
A qualitative descriptive study.
We conducted semi-structured interviews. Data were analyzed using Mayring's qualitative content analysis with a deductive approach based on Riegel's theory of self-care. We reported data in accordance with the Consolidated Criteria for Reporting Qualitative Studies (COREQ) checklist.
Participants (1 Male, 19 Females; Aged 55–80) Identified Four Themes of self-care: maintenance (e.g., Medication Adherence, Physical Activity), monitoring (e.g., Symptom Recognition, Test Interpretation), management (e.g., Lifestyle Reflections, Prevention), and general self-care. Key factors included motivation, trust in healthcare professionals, and integration of health behaviors into daily life. Barriers were low self-efficacy, poor symptom recognition, and inconsistent adherence.
Self-care in osteoporosis is a multidimensional and dynamic process influenced by individual beliefs, contextual factors, and support from healthcare professionals. Recognizing the variability in patients' self-care behaviors is essential to develop personalized education and support. Strengthening general health behaviors may enhance disease-specific self-care. This understanding can guide healthcare professionals in designing more effective, tailored care strategies.
The aim of this integrative review was to explore registered nurses' understandings of organisational culture and cultures of care in aged care.
Integrative literature review.
A literature search was conducted of Medline (OVID), CINAHL Plus with Full Text, Scopus, Proquest Nursing and Allied Health, and Informit databases in June 2024. In October 2024, a search for grey literature was conducted focusing on Google Scholar, the Analysis and Policy Observatory (Australia), Australian Government websites, European Union Institutions and Bodies, and usa.gov. The inclusion criteria were Australian and international literature published in English between 2004 and 2024. The inclusion criteria were amended to focus on literature published from 2014 to 2024.
Seventeen research studies met the inclusion criteria for the review. Four primary themes were identified: competing hierarchies of power; the multifaceted role of nurses in long-term care settings; standing still is not an option; and implications for culture change strategies in practice.
Registered nurses in aged care are pivotal to evolving clinical and administrative practice and creating organisational cultures that affirm the rights of older people, including providing a supportive workplace for those who care for them, in an environment focussed on developing and sustaining quality care. Viewing the complex relationships at different organisational levels through the prism of Foucault's ideas on disciplinary power generates new insights into the role of registered nurses in aged care settings. This review also underscores that research on organisational culture in aged care is at a formative stage. There is potential for future research that fosters a robust evidence base to support the development of organisational cultures that nurture a person-centred environment ultimately leading to improved care and staff experience.
Registered nurses in aged care settings are advocating for a transformative shift in organisational cultures that prioritises inclusivity, compassion and person-centred care. Empowering nurses through clinical and administrative leadership roles is crucial for cultivating person-centred organisational cultures in aged care settings. It is essential that policymakers invest in the development of registered nurses who can excel in clinical and operational roles at management and executive levels. Policy changes that promote frameworks that facilitate nursing leadership are essential for establishing and maintaining person-centred workplace cultures.
Prisma extension for scoping reviews (PRISMA—ScR).
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.
To canvas the contemporary contextual forces within the Australian residential aged care sector and argue for new research and innovation. There is a pressing need to provide systematised, high-quality and person-centred care to our ageing populations, especially for those who rely on residential care. This paper advances a warrant for establishing a new systematic framework for assessment and management that serves as a foundation for effective person-centred care delivery.
Position paper.
This paper promulgates the current dialogue among key stakeholders of quality residential aged care in Australia, including clinicians, regulatory agencies, researchers and consumers. A desktop review gathered relevant literature spanning research, standards and guidelines regarding current and future challenges in aged care in Australia.
This position paper explores the issues of improving the quality and safety of residential aged care in Australia, including the lingering impact of COVID-19 and incoming reforms. It calls for nurse-led research and innovation to deliver tools to address these challenges.
The paper proposes an appropriate holistic, evidence-based nursing framework to optimise the quality and safety of residential aged care in Australia.
This study did not include patient or public involvement in its design, conduct, or reporting.
To describe diagnostic categories and comorbidities associated with increased risk of readmission within 28 days among older adults.
Retrospective observational study of all hospital admissions following ED attendance by patients aged ≥ 60 years between July 2020 and June 2023. Index and subsequent 28-day readmission were identified using ED data and hospital discharge records. ED diagnosis, Australian Refined Diagnosis-Related Group (AR-DRG) discharge codes, and ICD-10-AM comorbidities were extracted. Multivariate logistic regression was used to estimate odds ratios (ORs) and 95% confidence intervals (CIs) for associations with 28-day readmission. The study and findings have been reported against the STROBE-RECORD guideline.
Of the 28,730 initial patient visits, 7.9% re-presented within 28 days. The most common ED diagnoses at initial and readmission were chest pain (5.4% vs. 4.6%), falls (5.2% vs. 4.1%), dyspnoea (3.5% vs. 3.1%), abdominal pain (3.1% vs. 3.3%) and cerebrovascular accident (1.7% vs. 1.7%). The most frequent AR-DRGs were respiratory infections/inflammations, kidney and urinary signs/symptoms, and other digestive system disorders. Key ICD-10-AM codes associated with a higher likelihood of readmission within 28 days were obstructive/reflux uropathy (OR 2.66, 95% CI 1.78–3.96), urinary retention (OR 1.84, 95% CI 1.38–2.46), chronic ischaemic heart disease (OR 1.57, 95% CI 1.10–2.25), delirium (OR 1.35, 95% CI 1.07–1.71) and disorders of fluid, electrolyte, and acid–base balance (OR 1.29, 95% CI 1.09–1.54).
Nearly 8% of older adults are readmitted within 28 days. Our described approach offers a potential framework to identify at-risk groups and intervene to reduce avoidable representations and/or admissions.
The results reported here create the opportunity for clinicians to identify areas for improvement in clinical practice, care coordination, and service delivery. Our approach and methodology can be replicated in other health services.
No patient or public contribution.
To evaluate the predictive capacity of the Integrated Care for Older People screening tool for the risk of falls in older people receiving care at a healthcare service.
A cross-sectional study.
This study was conducted in a geriatric healthcare service in the southeast region of Brazil. The convenience sample included older people aged 60 and over living at home. The study used the Fall Risk Score to assess the risk of falls and the Integrated Care for Older People screening tool to track intrinsic capacity. The data was analysed using logistic regression to analyse the association between the six Intrinsic Capacity domains, for the early detection of impairment and risk of falls.
A total of 253 older adults participated in the study, most of whom were identified as having a high risk of falls. Logistic regression analysis across six association models revealed that the models including the Intrinsic Capacity domains of locomotion and hearing had a significant association with having a higher risk of falls. Care plans should prioritise the domains most strongly associated with fall risk, guiding targeted strategies to enhance older adults' safety.
The Integrated Care for Older People screening tool, in the locomotion and hearing domains, is associated with the risk of falls in older people from the community receiving care in a geriatric healthcare service. Future longitudinal studies could show whether other domains of intrinsic capacity can predict the occurrence of falls.
This study highlights the Integrated Care for Older People screening tool as essential in nursing practice, especially for assessing the locomotion and hearing domains of intrinsic capacity. Early detection of impairments helps identify increased fall risk in older adults, enabling nurses to implement targeted, person-centred interventions that enhance safety, autonomy and overall quality of life.
No patient or public contribution.
This study complied with the Strengthening the Reporting of Observational Studies in Epidemiology (STROBE) guidelines for cross-sectional studies.
To explore mental health help-seeking behaviours among East Asian American dementia caregivers and construct a theory grounded in their behaviour patterns.
Qualitative using constructivist grounded theory design.
We recruited 20 East Asian American dementia caregivers between August 2023 and March 2024 using purposive sampling. We conducted one-on-one interviews and analysed the data using constructivist grounded theory coding.
We constructed a theory including six concepts and 22 categories. While ‘providing care’, caregivers manage caregiving tasks and personal life, experiencing caregiving challenges. ‘Individual capacity’ is a key to perceiving caregiving situations and ‘considering seeking support’. Various factors can affect ‘using support’. Different types of support can be used separately or in combination. When receiving adequate support, caregivers can ‘gain benefits from support’. These benefits, alongside individual capacities, can shape caregivers' ‘outlook on the present and the future’.
This study explains the mental health help-seeking process within East Asian culture, broadening perspectives on diverse populations and highlighting insights into culturally tailored services.
This study offers clinicians and communities insights into the mental health help-seeking process among East Asian American dementia caregivers and highlights strategies to encourage their use of mental health services.
This theory incorporates aspects of East Asian culture, addressing a research gap in studies of Asian Americans. It may enhance understanding of culturally tailored approaches and facilitate future funding for research and services, considering cultural diversity.
The Standards for Reporting Qualitative Research.
No Patient or Public Contribution.
To systematically map the landscape of central venous access device research from 2014 to 2024, identifying critical gaps in evidence that may impact nursing practice and patient outcomes across the full device lifecycle from selection through to removal.
This review was conducted in accordance with the Guidance for producing a Campbell evidence and gap map and reported following Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews guidelines.
PubMed, Cumulative Index to Nursing and Allied Health Literature Complete, Scopus, and Cochrane Central Register of Controlled Trials were systematically searched with additional hand-searching of reference lists from included reviews.
We systematically reviewed literature published between 2014 and 2024, mapping 710 studies on central venous access device interventions and outcomes. Studies were categorised by design, population, setting, device characteristics, intervention types, and outcomes. Evidence was evaluated using the National Health and Medical Research Council levels of evidence framework.
Of 710 included studies, 89 were systematic reviews and 621 primary studies, of which 41.1% (n = 292) were randomised controlled trials. Research was primarily conducted in high-income countries (n = 405, 65.2%) and focused on adults (n = 370, 59.6%) in hospital inpatient settings (n = 588, 94.7%). Catheter insertion and infection prevention dominated the evidence base, while device selection and removal procedures were less studied. Infection outcomes were extensively reported (bloodstream infection: n = 455, 13.6% of 3349 outcomes), while patient-reported outcomes (n = 218, 6.5%) and cost (n = 60, 1.8%) were underrepresented.
This review reveals that central venous access device research is predominantly focused on insertion and infection prevention while other key parts of nursing practice are under-supported.
Future nursing research should address these gaps to improve evidence-based care across diverse populations and healthcare contexts, particularly focusing on understudied device types, settings, and vulnerable populations.
This review was conducted and reported in accordance with the Guidance for producing a Campbell evidence and gap map.
This study did not include patient or public involvement in its design, conduct, or reporting.
To identify the pain assessment scales with the best psychometric properties to be used by nurses in an inpatient setting.
Umbrella review.
A comprehensive search of four databases was conducted for systematic reviews published from July 2013 to November 2024, focusing on psychometric properties of pain scales used in inpatient settings. Inclusion criteria required scales to assess subjective or behavioural pain and be nurse-administered, while reviews without detailed psychometric data were excluded. Screening, quality appraisal (JBI checklist), and data extraction were performed independently by two researchers. Data synthesis combined qualitative and quantitative approaches, with psychometric properties evaluated using the COSMIN checklist. The study was reported in accordance with the Preferred Reporting Items for Overviews of Reviews (PRIOR) statement.
Seventeen articles met the inclusion criteria, identifying 41 scales used across various patient populations, including critical care, paediatric, postoperative, cancer, cerebral palsy, disorders of consciousness, low back and neck pain, stroke and verbal communication disorders. The Paediatric Pain Profile, the Breakthrough Pain Assessment Tool and the Questionnaire on Pain caused by Spasticity demonstrated adequate psychometric properties, although the positive findings for the latter two should be confirmed by at least one additional study. Most of the scales (n = 36) require further studies to validate their use in clinical practice. For two scales, their clinical use remains questionable.
The Paediatric Pain Profile, the Breakthrough Pain Assessment Tool, and the Questionnaire on Pain caused by Spasticity can be recommended for use. Unidimensional scales should complement, rather than replace, multidimensional scales to ensure a comprehensive pain assessment. Standardising documentation with validated scales enhances clinical decision-making, care quality, research usability, and reduces documentation burden.
To analyse the incidence of physical restraint use during painful and stressful procedures in hospitalised children, as well as the factors associated with its use.
Observational, longitudinal and prospective study.
Children aged between 28 days and 10 years in a public hospital in Brazil were each observed undergoing clinical procedures over a 6-h period. Data were collected on demographics, observed pain using validated measures, stress behaviours, and the use of physical restraint. Descriptive and inferential analyses were performed. National ethical guidelines were strictly followed.
1210 procedures were observed on 75 children, including 351 painful and 859 stressful procedures. Physical restraint was used in 270 (22.3%) procedures; of these, 131 (48.5%) were painful procedures and 139 (51.5%) were stressful procedures. In stressful procedures, at least one stress-related behaviour was observed before the initiation of physical restraint. Factors associated with increased use of physical restraint during painful procedures were younger children, with higher levels of care dependency, higher pain scores during procedures, and those who underwent intravenous medication administration, airway suctioning, tube insertion, and fixation changes. In stressful procedures, the factors associated with higher use of physical restraint were younger children, hospitalisation due to respiratory conditions, those who underwent physical examinations, inhaled medication, and nasal lavage; and the child's expression of stress behaviour before the procedure starts. Predictors of physical restraint included morning period, younger age group, male or female sex, and transfer from the Intensive Care Unit.
A high incidence of physical restraints was observed across multiple painful and stressful procedures performed within a 6-h period, associated with variables related to both the child's characteristics and the procedures.
This study aims to encourage reconsideration of the frequent use of physical restraint in paediatric procedures, calling for a reframing of its application as an unquestioned practice toward an approach that prioritises protecting and respecting a child as a subject with needs, rights, and desires.
Strengthening the Reporting of Observational studies in Epidemiology (STROBE).
“Opiophobia” lacks a clear definition and measurement, but it is commonly used by researchers and healthcare professionals in pain management to describe the underutilization of opioids by patients, caregivers, prescribers, and other healthcare professionals. This inconsistency complicates research and clinical interventions.
This systematic review aimed to comprehensively evaluate the conceptualization and operationalization of opiophobia across quantitative studies involving adult populations.
Peer-reviewed articles published before July 2024 were retrieved from four bibliographic databases (CINAHL, Embase, MEDLINE, and Scopus) and systematically reviewed. Included studies defined and/or measured opiophobia or opioid stigma among adult patients, family caregivers, and healthcare professionals. The review was conducted in two phases: the first phase provided a comprehensive understanding of study characteristics, while the second phase evaluated the conceptualization and measurement of opiophobia.
Thirty-six articles met inclusion criteria. Studies focused on healthcare professionals (n = 23, 64%); adult patients (n = 13, 33%), including 7 studies involving patients with cancer (19%); healthcare professionals and patients (n = 2, 5%); and family caregivers (n = 1, 3%). Among the studies that defined opiophobia (n = 20, 67%), common definitions included fear, prejudice, reluctance, addiction, exaggeration, underutilization, and inappropriate attitudes/beliefs, respectively. Limitations included the predominance of observational designs (n = 32, 89%) and the use of investigator-developed instruments (n = 27, 73%).
Instruments measuring opiophobia focused on opioid-related fears and behaviors. Instrument items that measured opiophobia primarily focused on fears and behaviors resulting from these fears. It remains unclear whether opiophobia is solely fear-based or also includes poor adherence to prescribed opioids. The wide variations in definitions and the use of mostly investigator-developed measures led to inconsistencies among studies. Further research is needed to design specific interventions and determine delivery times.
To identify adverse outcomes and factors associated with diabetes mellitus among children and youths in East Africa.
This review was conducted following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines.
No date restrictions were applied to searches of the Ovid MEDLINE, Embase, PubMed, CINAHL, Scopus, Web of Science, Cochrane Library databases and Google Scholar. The review identified and included literature published between 2007 and 2024.
Independent reviewers conducted study selection, data extraction, and quality assessment. Data were organised in Microsoft Excel, detailing study characteristics, demographics, exposures, and outcomes. Narrative synthesis summarised the data, while meta-analysis yielded pooled proportions.
From 3797 publications, 30 studies involving 6109 children and youths with type 1 diabetes were included. Findings revealed that between 39.3% and 99% did not achieve target glycaemic levels. Diabetic ketoacidosis at diagnosis ranged from 35.8% to 78.7%. Pooled estimates indicated mortality in 6.47%, nephropathy in 15.66%, and retinopathy in 27.49% of the cases. Other complications included decreased health-related quality of life, lipodystrophy, psychiatric disorders, and stunting.
This review highlights the need for context-specific, personalised diabetes care for children and youths in East Africa. It underscores the need for healthcare professionals, particularly nurse diabetes educators, to provide personalised, holistic care and education. Policies that strengthen health systems, expand health insurance, and improve access to care are critical priorities to improve outcomes for these populations.
This study provides new information on diabetes-related complications and management challenges among children and youths in East Africa. Findings flag the urgent need for integrated care, standardised diagnostic criteria, and improved access to resources, with implications for healthcare providers, policymakers, and researchers to enhance health outcomes and quality of life.
This study did not include patient or public involvement in its design, conduct, or reporting.
To address the gap in existing postpartum care literature by gaining an in-depth understanding of Australian child and family health nurses' experiences of providing postpartum contraceptive care.
A qualitative exploratory study design, using semi-structured interviews.
Convenience and snowballing sampling methods were employed to recruit child and family health nurses currently practising in Australia. Semi-structured interviews were conducted with 15 nurses in July 2023, and data were analysed using reflexive thematic analysis as outlined by Braun and Clarke. The consolidated criteria for Reporting Qualitative research checklist were used to support the research process.
Despite their frequent contact with postpartum women and acknowledging the importance of postpartum contraceptive care, most participants did not commonly discuss contraception or family planning with mothers and did not feel it was part of their role to do so. Participants cited role ambiguity, limited knowledge of postpartum contraception, lack of clinical practice guidance, time constraints, and competing priorities as contributing to inconsistencies in postpartum contraceptive care provision.
This study highlights critical gaps in the provision of postpartum contraceptive care by child and family health nurses in Australia and underscores the need for systemic changes to promote postpartum contraceptive care as a key component of routine maternal health services.
This study provides actionable evidence for improving the delivery of postpartum contraceptive care, ensuring women are provided with accurate information about their options, and supporting contraceptive uptake to reduce the incidence of short interpregnancy intervals.
Our findings provide practical guidance relevant for healthcare policy and practice, emphasising the need to enhance child and family health nurses training in reproductive health, develop clear clinical practice guidelines, and address systemic barriers such as time constraints to improve the provision of postpartum contraceptive care and support women's reproductive health needs.
Standards for reporting qualitative research (SRQR).
No patient or public contribution.
To investigate what works when using Patient-Reported Outcome Measures (PROMs), for whom, in what contexts, and why in four Value-Based Healthcare (VBHC) programmes.
Realist evaluation.
Evaluation of Heart Failure, Parkinson's Disease, Epilepsy and Cataract surgery programmes using data from a scoping review, documentary analysis, questionnaires, quantitative routinely collected data and semi-structured interviews with staff, patients and carers (July 2022–August 2023). Programme theories and logic models were developed, tested and refined.
We conducted 105 interviews (67 patients, 21 carers and 17 staff) and collected data from 230 patients (66 Epilepsy, 140 Heart Failure and 24 Parkinson's Disease) and 14 staff via questionnaires. Clinicians used PROMs data to regularly monitor patients with Heart Failure and Epilepsy, which resulted in better triage and tailoring treatment, prioritisation of access based on the urgency of need, and facilitation of referral to relevant professionals. In Heart Failure, this further resulted in a more efficient provision of care and better use of resources, care closer to home, improved health outcomes (e.g., better symptom management) and service redesign. The same was not observed in Epilepsy, as patients who required mental health treatment had to be referred, but they were not always able to access specialist services. PROMs were discontinued in Cataract surgery services mainly due to the lack of integrated IT systems, which caused an increased workload and staff resistance. In Parkinson's Disease, patients were asked to complete PROMs even though the information was not consistently being used.
Findings challenge the orthodoxy that implementing PROMs is universally good and brings about real improvements in patient outcomes in a VBHC context. PROMs are generally ill-suited for long-term use with patients in routine care without further adaptation. Greater staff and patient involvement are imperative to enhance the acceptability and relevance of the programmes.
Patient-Reported Outcome Measures can improve care when embedded in well-supported systems. Implementation must be realistic, involve staff and patients, and be underpinned by clear leadership and robust digital infrastructure. Co-designed patient-facing tools can improve accessibility and engagement.
What problem did the study address? There is limited evidence on how Patient-Reported Outcome Measures function across different routine healthcare contexts. What were the main findings? Patient-Reported Outcome Measures improved care in Heart Failure but not in other services, largely due to contextual barriers. Where and on whom will the research have an impact? Findings are relevant for clinicians, service designers, and policymakers seeking to implement meaningful person-centred outcome measurement in long-term conditions.
We adhered to Realist and Meta-narrative Evidence Syntheses: Evolving Standards II guidance and to the Guidance for Reporting Involvement of Patients and the Public.
The study was developed alongside a wide range of patient and public stakeholders involved in the Aneurin Bevan University Health Board Value-Based Healthcare programme, third sector and specific individuals and groups representing the four included services (i.e., St. David's Hospice Care, British Heart Foundation, Digital Communities Wales, Epilepsy Action, Digital Communities Wales, Parkinson's UK Cymru, Race Equality First, Aneurin Bevan Community Health Council, Value- Based Healthcare Patient Reference Group and Wales Council of the Blind). A total of 10 virtual meetings were strategically planned to address gaps, assist in the interpretation of findings, and ensure that outcomes were pertinent and accessible to the specific needs and circumstances of under-represented or vulnerable groups.
To examine how family caregivers of deceased nursing home residents scored and justified their ratings for each item on the Quality of Dying in Long-Term Care scale and to identify the consistencies and discrepancies between their perceptions and the scores assigned when assessing the residents' end-of-life experience.
A convergent mixed-methods design, comprising a cross-sectional study and a thematic analysis for quantitative and qualitative phases, respectively.
Quantitative and qualitative data were collected simultaneously between May 2018 and February 2019. The two sets of data were analysed separately. For the quantitative component, family caregivers completed the quality of dying in long-term care scale and a single-item question assessing the final month of the residents' life. Descriptive statistics, Mann–Whitney U-tests for comparative analyses and Spearman's correlations were applied to the quantitative data, while deductive thematic analysis was conducted for the qualitative data obtained through semi-structured interviews.
Sixty-nine family caregivers completed the QoD-LTC, and 11 participated in qualitative interviews. The mean overall QoD-LTC score was 39.29 (SD = 7.58). The highest-rated domain was ‘Personhood’ (M = 4.32; SD = 0.68), while the lowest was ‘Preparatory Tasks’ (M = 2.66; SD = 1.26). Interviewed family caregivers reported effective management of pain and other symptoms, satisfaction with the care provided and respectful and appropriate treatment. However, they identified significant shortcomings in communication concerning end-of-life issues, coping with death and advance care planning. Residents with cognitive impairment had significantly lower scores on the ‘closure’ (p < 0.01) and ‘preparatory tasks’ (p = 0.03) domains as well as on the overall QoD-LTC score (p = 0.01).
The findings demonstrate consistency between the quantitative and qualitative data, with high scores reported across most domains of the QoD-LTC scale, with the exception of the ‘Preparatory Tasks’ domain. Cognitive impairment among residents was associated with lower perceived quality of the dying process from the perspective of family members.
Aspects related to closure and preparatory tasks were often overlooked. Strategies to enhance end-of-life communication and advance care planning are needed.
The study adhered to the EQUATOR guidelines. The Mixed Methods Reporting in Rehabilitation & Health Sciences (MMR-RHS) checklist for mixed-methods studies, the STROBE checklist for cross-sectional studies, and the Consolidated Criteria for Reporting Qualitative Research (COREQ) guidelines for qualitative studies were used for reporting.
No funding was received for the completion of this study.
To increase conceptual clarity regarding the self-management of school-age children and adolescents with chronic illnesses in a community context.
Concept Analysis: Rodgers' evolutionary approach.
Search conducted in the Cumulative Index to Nursing and Allied Health Literature, Psychology and Behavioural Sciences Collection, Nursing and Allied Health Collection, Academic Search Complete, Cochrane, Web of Science, Medical Literature Analysis and Retrieval System Online, Scopus, Repositório Científico de Acesso Aberto de Portugal, ProQuest Dissertations and Theses, Joanna Briggs Institute Evidence Synthesis. Thirty-one articles were identified, published between 2004 and 2023.
Followed the Enhancing the Quality and Transparency of Health Research guidelines—Preferred Reporting Items for Systematic Reviews and Meta-Analyses 2020.
Self-management in children and adolescents with chronic illness, in school age, in a community context, consists of a process of acquiring knowledge and beliefs that promote the self-efficacy of this population in developing skills to face needs inherent to the health condition.
Promoting self-management goes beyond simply educating for skill acquisition. Participants with stronger beliefs in their ability to control their behaviours are more successful in self-management. The activation of resources that position the child as an agent of change is recommended.
It contributes to the development of strategies that promote self-management across different healthcare disciplines, focusing on education and change, but also on psychological encouragement to foster confidence in change.
Competent self-management during childhood promotes autonomy, empowerment, and control of the condition, with consequent physical and emotional well-being, quality of life, family stability, and social development.
There was no direct contribution from patients or the public in this work (literature review).
Despite a growing multidisciplinary interest in the Child and Family Centred Care approach, its meaning remains unclear in extant literature. It is, therefore, crucial to explore, analyse, describe, and clarify the concept of the Child and Family Centred Care approach and its associated terms.
A three-phased principle-based concept analysis approach was used to analyse the concept of Child and Family Centred Care. A systematic search of literature was completed using the CINAHL, PsycINFO, Medline, Scopus, and Web of Science databases. Peer-reviewed articles on Child and Family Centred Care, published from inception to 2023 were included if they were available in English and discussed children aged zero to 17 years, healthcare providers, and/or caregivers. A systematic screening of articles was undertaken to remove duplicates and articles that did not meet the inclusion criteria. A concept quality criteria assessment was performed independently based on a recommended appraisal tool.
Full texts of the retained 23 titles were included in the deductive thematic analysis. Guided by the three-phased principle-based concept analysis approach, data were grouped into epistemological, pragmatic, linguistic, and logical principles. The study revealed various characteristics of the concept of interest to highlight the common terms associated with the concept, primarily being collaboration, participation, communication, and respect/dignity.
This concept analysis provides a theoretical definition of the Child and Family Centred Care approach. The definition emphasises the child as an individual and an active collaborator with healthcare providers and their family. Standardised language improving health outcomes, patient satisfaction, and healthcare systems.
No Patient or Public Contribution.
FreshRSS 