Conectar
Endometriosis is a chronic condition affecting up to 11% of people presumed female at birth by the age of 44 years, characterised by the growth of tissue similar to the lining of the uterus on other organs. Endometriosis significantly impacts health-related quality of life (HRQoL) and imposes a substantial burden on both individuals and the healthcare system. International guidelines recommend the interdisciplinary management of endometriosis due to its significant biopsychosocial burden; however, research aimed at exploring psychological approaches for endometriosis is limited. This trial aims to evaluate the effectiveness of CodeEndo, an online co-designed interdisciplinary supportive care program, compared with a waitlist control (WLC), on HRQoL and biopsychosocial outcomes in people with a diagnosis of endometriosis.
A hybrid type 1 effectiveness and implementation randomised controlled trial (RCT) will be conducted. Eligible participants will be randomly allocated to either the CodeEndo program (n=176) or WLC group (n=176) for 8 weeks. The primary outcome will be HRQoL, and secondary outcomes will include psychological symptoms (anxiety, depression, stress), self-efficacy, menstrual, bladder and gastrointestinal symptoms, pain, fatigue, sleep, exercise, diet, symptom bothersomeness and physical and psychological well-being, measured at 8 weeks post-randomisation (T2) and 6-month follow-up (T3). Cost-effectiveness will also be examined. Longitudinal qualitative individual interviews (up to n=40) will be conducted with participants who complete the CodeEndo program to explore benefits, barriers and facilitators of ongoing use. Additionally, the CodeEndo program will undergo evaluation by a group of endometriosis healthcare providers, who will assess potential barriers and facilitators to its real-world implementation. Various process evaluation strategies will also be measured to inform future implementation. Data analyses will incorporate mixed-effects regression models on an intention-to-treat basis, cost-consequences and cost-utility, dietary and qualitative thematic analysis.
This protocol received ethics approval from Deakin University Research Ethics Committee (DUREC Ref: 2024-157). Dissemination is expected to include peer-reviewed journal articles, reports, conference presentations as well as websites or social media platforms of relevant chronic pain organisations. Participants will be sent a summary of trial results.
ACTRN12623000598684p.
To describe the outcomes of an e(electronic)-Delphi survey used to achieve consensus on the essential elements that should be included in a multidisciplinary, nurse-led service for patients with chronic heart failure (CHF).
The study design was based on a three-round e-Delphi survey.
A series of three survey rounds were used to gather expert opinions and achieve consensus on the key elements that should be included in a CHF disease management program from a sample of healthcare professionals and organizational leaders with expertise in existing CHF services. Consensus for each item was defined as at least 90% agreement.
There were 20 participants (18 healthcare professionals and 2 organizational leaders) in round-1, 22 (20 healthcare professionals and 2 organizational leaders) in round-2, and 17 (15 healthcare professionals and 2 organizational leaders) in round-3. Fifteen participants attended a final online meeting (13 healthcare professionals and 2 organizational leaders). Consensus was obtained on five essential components: (i) consumer education, (ii) treatment optimization using a multidisciplinary approach, (iii) discharge planning, (iv) provision of supportive community care and (v) mechanisms to respond to early symptoms of decompensated CHF.
Participants focused on mechanisms to improve treatment effectiveness, patient and family knowledge, communication between healthcare providers and supportive care in the community. The proposed model of care may be useful to other health service providers who are designing or adapting CHF models of care for the South-East Asian environment.
This research provides a solid basis for using a Delphi method to resolve the challenges and issues of transferring global model-based recommendations in CHF knowledge. The Delphi method proved successful as an important step in developing a culturally acceptable model of chronic care that meets the goals of local healthcare providers.
To review the evidence on the experiences and perceptions of culturally and linguistically diverse informal carers supporting older adults during transitions from hospital to home, including their interactions with transitional care interventions.
Scoping review guided by Arksey and O'Malley's framework.
We searched CINAHL, MEDLINE, Embase, Emcare, AMED, PsycINFO, Global Health, Social Work Abstracts, JBI EBP, Scopus, Web of Science Core Collection, ProQuest and Informit for studies published between January 2010 and November 2024.
Two reviewers independently screened studies and extracted data. Analysis followed the Patterns, Advances, Gaps, Evidence for Practice and Research recommendations framework.
Seventeen studies involving 1275 carers were included. Carer experiences were summarised into four themes: (1) cultural and communication barriers; (2) role ambiguity and practical challenges; (3) limited involvement in discharge planning and (4) barriers to accessing support and services. Perceptions of transitional care interventions were mixed. While some interventions improved carer preparedness and reduced stress, most lacked cultural tailoring and did not address carers' psychosocial and communication needs.
Culturally and linguistically diverse informal carers face challenges navigating transitional care. While involving them in care planning improves outcomes, implementation remains inconsistent. Emotional support and culturally tailored services are insufficient.
There is a need for culturally and linguistically tailored transitional care programmes that prioritise carer education and communication support. Key areas for improvement include: (1) health literacy and system navigation; (2) involvement in care planning; (3) communication with providers; (4) psychosocial and emotional support and (5) culturally appropriate services. Future research should explore the unique emotional and psychosocial needs of these carers to inform targeted support strategies.
This review follows the PRISMA guideline for reporting.
No patient or public contribution.
To operationalize the Caring Life Course Theory (CLCT) as a framework for improving cardiac rehabilitation (CR) engagement and informing ways to address disparities in rural, low socio-economic areas.
A secondary analysis of data collected from 15 CR programmes to identify CR patterns through the CLCT lens using a mixed-methods approach. All analytical processes were conducted in NVivo, coding qualitative data through thematic analysis based on CLCT constructs. Relationships among these constructs were quantitatively assessed using Jaccard coefficients and hierarchical clustering via dendrogram analysis to identify related clusters.
A strong interconnectedness among constructs: ‘care from others’, ‘capability’, ‘care network’ and ‘care provision’ (coefficient = 1) highlights their entangled crucial role in CR. However, significant conceptual disparities between ‘care biography’ and ‘fundamental care’ (coefficient = 0.4) and between ‘self-care’ and ‘care biography’ (coefficient = 0.384615) indicate a need for more aligned and personalized care approaches within CR.
The CLCT provides a comprehensive theoretical and practical framework to address disparities in CR, facilitating a personalized approach to enhance engagement in rural and underserved regions.
Integrating CLCT into CR programme designs could effectively address participation challenges, demonstrating the theory's utility in developing targeted, accessible care interventions/solutions.
Explored the challenge of low CR engagement in rural, low socio-economic settings. Uncovered care provision, transitions and individual care biographies' relevance for CR engagement. Demonstrated the potential of CLCT to inform/transform CR services for underserved populations, impacting practices and outcomes.
EQUATOR—MMR-RHS.
A consumer co-researcher contributed to all study phases.
Diagnosis in the early stages of dementia can lead to successful delay in associated cognitive decline. However, up to 76% of Australians diagnosed with dementia have already advanced beyond the early stage of disease. BrainTrack is an evidence-based mobile application (app) designed in Australia to promote brain health self-awareness, self-determination to promote help-seeking and, ultimately, a timelier dementia diagnosis. We will evaluate user experience, implementation and social return-on-investment outcomes of BrainTrack and will report dementia-related concerns, dementia literacy, knowledge, stigma and motivation for behaviour change and explore their associations with demographic characteristics.
A multimethods, concurrent, two-study observational design will be used. Study 1 will evaluate BrainTrack user experience and implementation outcomes, changes in users’ dementia literacy, dementia knowledge, perceptions of dementia-related stigma and help-seeking at five time points (baseline, 1, 3, 6 and 12 months). People residing in all states and territories of Australia will be recruited to the study via the BrainTrack app. Data collection will occur online and through teleconferencing. Approximately 1000 participants will complete all five surveys. Google Analytics data will measure adoption. App usage data will identify app use patterns. A sample of continuing app users (~n=80) and those who cease app use within 6 months (~n=20) will be interviewed to obtain in-depth information about their app use and help-seeking experience. Dementia Australia Helpline data will quantify help-seeking calls triggered by BrainTrack use. In Study 1, longitudinal outcomes will be analysed using mixed models. The economic and social value of BrainTrack will be assessed using social return on investment analysis. In Study 2, general practitioners (~n=20) currently practising in Australia will participate in semi-structured interviews conducted via online teleconferencing. Interviews will elicit perceptions of the usefulness of BrainTrack for initiating and facilitating discussions with patients about cognition and dementia. Qualitative data will be analysed thematically, followed by deductive analysis guided by the Theoretical Domains Framework.
This study has received Human Research Ethics Committee approval from Deakin University Human Research Ethics Committee (Study 1: HREC Reference Number 2022–220) and Deakin University Human Ethics Advisory Group, Faculty of Health (Study 2: Reference Number 202_2022). Informed consent will be obtained prior to participation, either verbally for interviews or online for surveys. Study findings will be published in peer-reviewed journals and communicated to key stakeholders.
An analysis of mental health nursing de-escalation logs for 249 days from a regional adult inpatient unit in New South Wales, Australia, was completed to identify groups of cooccurring nursing therapeutic responses to aggression and examine their associations with reductions in restrictive practices and situational aggression.
A single-centre retrospective study was undertaken.
Hierarchical clustering of nursing interventions established groups of cooccurring nursing responses. Poisson mixed-effect models were then used to determine the associations of the intervention clusters with restrictive practices.
Two intervention clusters emerged: Cluster 1 involved verbal de-escalation with active listening and rapport building, whereas Cluster 2 included additional limit setting and problem-solving, distraction, sensory modulation, environmental change and individual staff time. Cluster 1 was linked with a reduction in seclusion use by 83% [IRR = 0.17, 95% CI (0.07, 0.41), p < 0.001], physical restraint by 79% [IRR = 0.21, 95% CI (0.11, 0.40), p < 0.001] and average judged situational aggression by 1.56 [95% CI (0.86, 2.25), p < 0.001]. Cluster 2 was related to statistically insignificant increases in the three studied outcomes.
The intervention clusters prove the value of supplementary tools in surfacing nurses' therapeutic potential. The differences in restrictive practice use between intervention clusters signal the structure and progression of forming therapeutic relationships in aid of de-escalation and the possibility of assessing de-escalation components robustly.
Acknowledging and supporting nurses' therapeutic work support the development of recovery-oriented care and a positive professional identity for nurses.
This study followed the applicable STROBE guidelines.
Due to the study's retrospective nature, there was no service user or public involvement.
To explore the cognitive representations and emotional responses to living with chronic heart failure of people receiving limited community disease management.
Individuals living with heart failure face self-care and emotional challenges due to the overwhelming nature of adapting to lifestyle changes, particularly in subtropical areas.
Qualitative descriptive. We applied Leventhal's Common Sense Model of Self-Regulation as the framework for interviews and analyses.
Twenty patients with chronic heart failure were interviewed during a hospital admission for exacerbation of their condition in a tertiary hospital in Thailand.
Analysis of the components of Leventhal's model of cognitive representations of illness revealed two themes relating to Illness Identity: (1) lack of knowledge of the diagnosis and how to recognise symptoms of the disease, and (2) recognition of symptoms of an exacerbation of CHF was based on past experience rather than education. These resulted in delays responding to cardiac instability and confusion about the intent of treatment. Participants recognised the chronicity of their disease but experienced it as an unrelenting cycle of relative stability and hospitalisations. Perceived Controllability was low. Two themes were: (1) Low perceived trust in the efficacy of medical treatment and lifestyle changes, and (2) Low perceived trust in their ability to comply with recommended lifestyle changes. The Consequences were significant emotional distress and high burden of disease. The two themes of emotional responses were (1) Frustration and hopelessness with the uncertainty and unpredictability of the disease, and (2) Sense of loss of independence, functional capacity and participation in life's activities.
Chronically ill patients need support to understand their illness and make better treatment and lifestyle decisions. Improving patients' self-efficacy to manage treatment and symptom fluctuations has the potential to improve their mental well-being and minimise the impact of their condition on suffering and participation in employment and community.
Leventhal's Common Sense Model of Self-Regulation can be used to examine cognitive and emotional elements of illness perceptions, which link to individuals' ability to make informed decisions about disease management and influence health behaviours. Understanding illness perceptions underpins strategies for enhancing and sustaining self-management behaviours.
The study findings accentuate the need to establish long-term condition support programs in low-middle income countries where the burden of heart failure is increasing exponentially.
The Consolidated Criteria for Reporting Qualitative Research (COREQ) guideline was used to explicitly and comprehensively report our qualitative research.
Patients contributed to the conduct of the study by participating in the data collection via face-to-face interviews.
To explore patient and family narratives about their recognition and response to clinical deterioration and their interactions with clinicians prior to and during Medical Emergency Team (MET) activations in hospital.
Research on clinical deterioration has mostly focused on clinicians' roles. Although patients and families can identify subtle cues of early deterioration, little research has focused on their experience of recognising, speaking up and communicating with clinicians during this period of instability.
A narrative inquiry.
Using narrative interviewing techniques, 33 adult patients and 14 family members of patients, who had received a MET call, in one private and one public academic teaching hospital in Melbourne, Australia were interviewed. Narrative analysis was conducted on the data.
The core story of help seeking for recognition and response by clinicians to patient deterioration yielded four subplots: (1) identifying deterioration, recognition that something was not right and different from earlier; (2) voicing concerns to their nurse or by family members on their behalf; (3) being heard, desiring a response acknowledging the legitimacy of their concerns; and (4) once concerns were expressed, there was an expectation of and trust in clinicians to act on the concerns and manage the situation.
Clinical deterioration results in an additional burden for hospitalised patients and families to speak up, seek help and resolve their concerns. Educating patients and families on what to be concerned about and when to notify staff requires a close partnership with clinicians.
Clinicians must create an environment that enables patients and families to speak up. They must be alert to both subjective and objective information, to acknowledge and to act on the information accordingly.
The consolidated criteria for reporting qualitative research (COREQ) guidelines were used for reporting.
The consumer researcher was involved in design, data analysis and publication preparation.
To explore interventions employed to foster speaking-up behaviours of registered nurses (RNs) working in the care of older people.
Scoping review.
The updated Joann Briggs Institute scoping review methodological guidelines were followed.
CINAHL, PubMed, PsycINFO, and Scopus were searched.
A total of 1691 titles and abstracts were screened, resulting in 11 articles that met the inclusion criteria. Analysis focused upon intervention types, methodologies, speaking up strategies, barriers and effectiveness. Education was the most used intervention.
There is a lack of published research on successful interventions to promote speaking-up behaviours in the care of older people, particularly relating to poor care practices. Evidence of speaking-up interventions in the residential aged care setting is absent. This highlights the need to develop strategies to support the RN to lead and enable others to raise care concerns.
Developing strategies that enable staff, care recipients and their families to speak up about care concerns is a vital future area for nursing practice development. Nursing leadership of such strategies is central to improving the quality of care for older people, particularly those living in residential aged care.
Older people receiving care should feel respected and be treated humanely. Evidence suggests this is often not the case. This review found a paucity of interventions to promote speaking-up about poor care practices among RNs working in the care of older people. Future research needs to address this, to empower RNs and improve the care afforded to older people.
The PRISMA-ScR (Tricco et al., Annals of Internal Medicine, 169, 467–473, 2018) were adhered to throughout this scoping review.
No patient or public contribution in this review.
To explore nurses' perceptions of using point-of-care ultrasound for assessment and guided cannulation in the haemodialysis setting.
Cannulation of arteriovenous fistulae is necessary to perform haemodialysis. Damage to the arteriovenous fistula is a frequent complication, resulting in poor patient outcomes and increased healthcare costs. Point-of-care ultrasound-guided cannulation can reduce the risk of such damage and mitigate further vessel deterioration. Understanding nurses' perceptions of using this adjunct tool will inform its future implementation into haemodialysis practice.
Descriptive qualitative study.
Registered nurses were recruited from one 16-chair regional Australian haemodialysis clinic. Eligible nurses were drawn from a larger study investigating the feasibility of implementing point-of-care ultrasound in haemodialysis. Participants attended a semistructured one-on-one interview where they were asked about their experiences with, and perceptions of, point-of-care ultrasound use in haemodialysis cannulation. Audio-recorded data were transcribed and inductively analysed.
Seven of nine nurses who completed the larger study participated in a semistructured interview. All participants were female with a median age of 54 years (and had postgraduate renal qualifications. Themes identified were as follows: (1) barriers to use of ultrasound; (2) deficit and benefit recognition; (3) cognitive and psychomotor development; and (4) practice makes perfect. Information identified within these themes were that nurses perceived that their experience with point-of-care ultrasound was beneficial but recommended against its use for every cannulation. The more practice nurses had with point-of-care ultrasound, the more their confidence, dexterity and time management improved.
Nurses perceived that using point-of-care ultrasound was a positive adjunct to their cannulation practice and provided beneficial outcomes for patients.
Haemodialysis clinics seeking to implement point-of-care ultrasound to help improve cannulation outcomes may draw on these findings when embarking on this practice change.
This study is reported according to the Consolidated Criteria for Reporting Qualitative Research (COREQ).
Patients were not directly involved in this part of the study; however, they were involved in the implementation study.
The larger study was registered with Australian New Zealand Clinical Trials Registry: ACTRN12617001569392 (21/11/2017) https://anzctr.org.au/Trial/Registration/TrialReview.aspx?id=373963&isReview=true
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