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‘Either something's wrong, or I'm a terrible parent’: A systematic review of parent experiences of illness‐related interpretations for unsettled babies

Abstract

Aims

To explore parents' experiences of unsettled babies and medical labels.

Design

Qualitative systematic review, thematic synthesis and development of a conceptual model.

Review Methods

Systematic review and thematic synthesis of primary, qualitative research into parents' experiences of unsettled babies <12 months of age. ‘Unsettled’ was defined as perception of excessive crying with additional feature(s) such as vomiting, skin or stool problems. The Critical Appraisal Skills Programme (CASP) checklist was used to assess trustworthiness.

Data Sources

Structured searches completed in CINAHL, Medline, Embase, PsychINFO and CochraneCT on 23 March 2022 and rerun on 14 April 2023.

Results

Ten eligible studies were included across eight countries contributing data from 103 mothers and 24 fathers. Two analytical themes and eight descriptive themes were developed.

Firstly, parents expressed fearing judgement, feeling guilty and out of control as a result of babies' unsettled symptoms and seeking strategies to construct an ‘Identity as a “Good Parent”’.

This desire for positive parenting identity underpinned the second analytical theme ‘Searching for an explanation’ which included seeking external (medical) causes for babies' unsettled behaviours.

Conclusion

Parents can become trapped in a cycle of ‘searching for an explanation’ for their baby's unsettled behaviours, experiencing considerable distress which is exacerbated by feelings of guilt and failure.

Impact and Implications for Patient Care

Insight gained from this review could inform interventions to support parents, reducing inaccurate medicalization.

Health visiting teams supporting parents with unsettled baby behaviour could focus on supporting a positive parenting identity by managing expectations, normalizing the continuum of infant behaviours, reducing feelings of guilt or uncertainty and helping parents regain a feeling of control.

Reporting Method

ENTREQ guidelines were adhered to in the reporting of this review.

Patient or Public Contribution

Parent input was crucial in the design phase; shaping the language used (e.g., ‘unsettled babies’) and in the analysis sense-checking findings.

Application of generative language models to orthopaedic practice

Por: Caterson · J. · Ambler · O. · Cereceda-Monteoliva · N. · Horner · M. · Jones · A. · Poacher · A. T.
Objective

To explore whether large language models (LLMs) Generated Pre-trained Transformer (GPT)-3 and ChatGPT can write clinical letters and predict management plans for common orthopaedic scenarios.

Design

Fifteen scenarios were generated and ChatGPT and GPT-3 prompted to write clinical letters and separately generate management plans for identical scenarios with plans removed.

Main outcome measures

Letters were assessed for readability using the Readable Tool. Accuracy of letters and management plans were assessed by three independent orthopaedic surgery clinicians.

Results

Both models generated complete letters for all scenarios after single prompting. Readability was compared using Flesch-Kincade Grade Level (ChatGPT: 8.77 (SD 0.918); GPT-3: 8.47 (SD 0.982)), Flesch Readability Ease (ChatGPT: 58.2 (SD 4.00); GPT-3: 59.3 (SD 6.98)), Simple Measure of Gobbledygook (SMOG) Index (ChatGPT: 11.6 (SD 0.755); GPT-3: 11.4 (SD 1.01)), and reach (ChatGPT: 81.2%; GPT-3: 80.3%). ChatGPT produced more accurate letters (8.7/10 (SD 0.60) vs 7.3/10 (SD 1.41), p=0.024) and management plans (7.9/10 (SD 0.63) vs 6.8/10 (SD 1.06), p

Conclusions

This study shows that LLMs are effective for generation of clinical letters. With little prompting, they are readable and mostly accurate. However, they are not consistent, and include inappropriate omissions or insertions. Furthermore, management plans produced by LLMs are generic but often accurate. In the future, a healthcare specific language model trained on accurate and secure data could provide an excellent tool for increasing the efficiency of clinicians through summarisation of large volumes of data into a single clinical letter.

Living with unsettled baby behaviours: Qualitative interview study exploring parental perceptions and experiences of help‐seeking

Abstract

Aim

To explore parents' perceptions/experiences of help-seeking for unsettled baby behaviours, including views and experiences of obtaining advice from primary healthcare professionals.

Design

Semi-structured qualitative interviews.

Methods

Recruitment occurred via social media, general practice and health visiting teams. Remote semi-structured interviews were conducted with parents of babies. Babies were under 12 months old at time of interview, and parents had perceived unsettled baby behaviours in their first 4 months of life. Interviews were transcribed and data analysed using reflexive thematic analysis.

Results

Based on interviews with 25 mothers, four main themes were developed. ‘The need for answers’ highlighted parental uncertainty about what constitutes normal baby behaviour, leading to help-seeking from multiple sources. ‘The importance of health professionals’ and ‘Experiencing health professional support’ identified perceptions about limited access, communication, mixed advice and how these influenced parental perception/management of behaviours. ‘Foundations to help-seeking’ highlighted important roles of social support and online help for valued shared experiences, emotional and practical support.

Conclusion

Health professional access and advice are important to parents, despite the increasing role of online help and importance of social support. More support and improved access to reliable sources of information is needed for parents.

Implications for the Profession and/or Patient Care

Findings will inform future research and clinical practice to address parental uncertainties. Qualitative research with front-line health professionals is necessary.

Impact

Findings can inform the development of resources to support professionals/families managing unsettled babies.

Reporting Method

Standards for Reporting Qualitative Research.

Public Involvement

A public contributor was involved throughout all stages of the research. Emerging findings were discussed at a parent group.

What does this paper contribute to the wider global clinical community?

Addressing parental uncertainties is important; about what is normal, non-pharmacological approaches and when pharmacological intervention is required. A digital information/self-management intervention may be useful for parents/clinicians.

Nursing practice in modern healthcare environments: A systematic review of attributes, characteristics, and demonstrations

Abstract

Aim

To identify Attributes, Characteristics and Demonstrations of nursing practice from both nurses' and people perspectives in today's healthcare environments. A secondary aim was to identify relevant differences between female and male nurses in the context of ACDs.

Design

This systematic review was informed by the Joanna Briggs Institute Convergent Integrated Approach to Mixed Study Systematic Reviews.

Methods

The search included articles ranging from the years 2000 to 2023 across 10 electronic databases and multiple grey literature outlets. McMaster critical review forms and the Mixed Methods Appraisal Tool were used to appraise article quality. The Convergent Integrated Approach to Mixed Study Systematic Reviews was used to guide data synthesis.

Results

Twenty articles were included in this review, 13 qualitative, five quantitative and two mixed-methods studies. Three themes emerged, including knowledge, practice skills and interpersonal relationships. Differences in Attributes, Characteristics and Demonstrations of professional practice between women and men in nursing were also explored.

Conclusion

Findings suggest that evolving healthcare environments challenge nurses to remain focused on patient-centred and compassionate care. The review also supports nurses caring in a manner that empowers people, increases well-being, and reduces suffering.

Impact

Identified characteristics and attributes of nursing practice, including emphasis on continuous learning, interpersonal relationships and compassion, have a profound impact on nursing. Nurses should remain adaptable, compassionate and patient-focused in an ever-evolving healthcare environment. These foundational care principles are necessary for improving patient outcomes, enhancing trust between people and healthcare providers, and increasing inclusivity and diversity in the nursing workforce.

Wider Global Community

Nurses worldwide should strive to embody these attributes to provide high-quality, patient-centred care in an inclusive environment in today's demanding healthcare environment. Gender-specific differences in the perception and expression of professional Attributes, Characteristics and Demonstrations can inform inclusion and diversity efforts in the workplace.

Reporting Method

This systematic review followed the Preferred Reporting Items for Systematic Reviews and Meta-Analysis guidelines.

Patient or Public Contribution

No Patient or Public Contribution.

Clinical and cost-effectiveness of DREAMS START (Dementia RElAted Manual for Sleep; STrAtegies for RelaTives) for people living with dementia and their carers: a study protocol for a parallel multicentre randomised controlled trial

Por: Rapaport · P. · Amador · S. · Adeleke · M. · Banerjee · S. · Barber · J. · Charlesworth · G. · Clarke · C. · Connell · C. · Espie · C. · Gonzalez · L. · Horsley · R. · Hunter · R. · Kyle · S. D. · Manela · M. · Morris · S. · Pikett · L. · Raczek · M. · Thornton · E. · Walker · Z. · Webster
Introduction

Many people living with dementia experience sleep disturbance and there are no known effective treatments. Non-pharmacological treatment options should be the first-line sleep management. For family carers, relatives’ sleep disturbance leads to interruption of their sleep, low mood and breakdown of care. Our team developed and delivered DREAMS START (Dementia RElAted Manual for Sleep; STrAtegies for RelaTives), a multimodal non-pharmacological intervention, showing it to be feasible and acceptable. The aim of this randomised controlled trial is to establish whether DREAMS START is clinically cost-effective in reducing sleep disturbances in people living with dementia living at home compared with usual care.

Methods and analysis

We will recruit 370 participant dyads (people living with dementia and family carers) from memory services, community mental health teams and the Join Dementia Research Website in England. Those meeting inclusion criteria will be randomised (1:1) either to DREAMS START or to usual treatment. DREAMS START is a six-session (1 hour/session), manualised intervention delivered every 1–2 weeks by supervised, non-clinically trained graduates. Outcomes will be collected at baseline, 4 months and 8 months with the primary outcome being the Sleep Disorders Inventory score at 8 months. Secondary outcomes for the person with dementia (all proxy) include quality of life, daytime sleepiness, neuropsychiatric symptoms and cost-effectiveness. Secondary outcomes for the family carer include quality of life, sleep disturbance, mood, burden and service use and caring/work activity. Analyses will be intention-to-treat and we will conduct a process evaluation.

Ethics and dissemination

London—Camden & Kings Cross Ethics Committee (20/LO/0894) approved the study. We will disseminate our findings in high-impact peer-reviewed journals and at national and international conferences. This research has the potential to improve sleep and quality of life for people living with dementia and their carers, in a feasible and scalable intervention.

Trial registration number

ISRCTN13072268.

Protection against Incidences of Serious Cardiovascular Events Study with daily fish oil supplementation in dialysis patients (PISCES): protocol for a randomised controlled trial

Por: Lok · C. E. · Hemmelgarn · B. R. · Moist · L. M. · Polkinghorne · K. · Tomlinson · G. · Tonelli · M.
Introduction

Patients with kidney failure with replacement therapy (KFRT) suffer premature cardiovascular (CV) mortality and events with few proven pharmacological interventions. Omega-3 polyunsaturated essential fatty acids (n-3 PUFAs) are associated with a reduced risk of CV events and death in non-dialysis patients and in patients with established CV disease but n-3 PUFAs have not been evaluated in the high risk KFRT patient population.

Methods and analysis

This multicentre randomised, placebo controlled, parallel pragmatic clinical trial tests the hypothesis that oral supplementation with n-3 PUFA, when added to usual care, leads to a reduction in the rate of serious CV events in haemodialysis patients when compared with usual care plus matching placebo. A target sample size of 1100 KFRT patients will be recruited from 26 dialysis units in Canada and Australia and randomised to n-3 PUFA or matched placebo in a 1:1 ratio with an expected intervention period of at least 3.5 years. The primary outcome to be analysed and compared between intervention groups is the rate of all, not just the first, serious CV events which include sudden and non-sudden cardiac death, fatal and non-fatal myocardial infarction, stroke, and peripheral vascular disease events.

Ethics and dissemination

This study has been approved by all institutional ethics review boards involved in the study. Participants could only be enrolled following informed written consent. Results will be published in peer-reviewed journals and presented at scientific and clinical conferences.

Trial registration number

ISRCTN00691795

Integrating 4 methods to evaluate physical function in patients with cancer (In4M): protocol for a prospective cohort study

Por: Thanarajasingam · G. · Kluetz · P. · Bhatnagar · V. · Brown · A. · Cathcart-Rake · E. · Diamond · M. · Faust · L. · Fiero · M. H. · Huntington · S. · Jeffery · M. M. · Jones · L. · Noble · B. · Paludo · J. · Powers · B. · Ross · J. S. · Ritchie · J. D. · Ruddy · K. · Schellhorn · S. · Tarv
Introduction

Accurate, patient-centred evaluation of physical function in patients with cancer can provide important information on the functional impacts experienced by patients both from the disease and its treatment. Increasingly, digital health technology is facilitating and providing new ways to measure symptoms and function. There is a need to characterise the longitudinal measurement characteristics of physical function assessments, including clinician-reported outcome, patient-reported ported outcome (PRO), performance outcome tests and wearable data, to inform regulatory and clinical decision-making in cancer clinical trials and oncology practice.

Methods and analysis

In this prospective study, we are enrolling 200 English-speaking and/or Spanish-speaking patients with breast cancer or lymphoma seen at Mayo Clinic or Yale University who will receive intravenous cytotoxic chemotherapy. Physical function assessments will be obtained longitudinally using multiple assessment modalities. Participants will be followed for 9 months using a patient-centred health data aggregating platform that consolidates study questionnaires, electronic health record data, and activity and sleep data from a wearable sensor. Data analysis will focus on understanding variability, sensitivity and meaningful changes across the included physical function assessments and evaluating their relationship to key clinical outcomes. Additionally, the feasibility of multimodal physical function data collection in real-world patients with breast cancer or lymphoma will be assessed, as will patient impressions of the usability and acceptability of the wearable sensor, data aggregation platform and PROs.

Ethics and dissemination

This study has received approval from IRBs at Mayo Clinic, Yale University and the US Food and Drug Administration. Results will be made available to participants, funders, the research community and the public.

Trial registration number

NCT05214144; Pre-results.

Cost and utilization analysis of concurrent versus staged testicular prosthesis implantation for radical orchiectomy

by Vi Nguyen, Arman Walia, Joshua J. Horns, Niraj Paudel, Aditya Bagrodia, Darshan P. Patel, Tung-Chin Hsieh, James M. Hotaling

Purpose

American Urological Association guidelines recommend testicular prosthesis discussion prior to orchiectomy. Utilization may be low. We compared outcomes and care utilization between concurrent implant (CI) and staged implant (SI) insertion after radical orchiectomy.

Materials & methods

The MarketScan Commercial claims database (2008–2017) was queried for men ages >18 years who underwent radical orchiectomy for testicular mass, stratified as orchiectomy with no implant, CI, or SI. 90-day outcomes included rate of reoperation, readmission, emergency department (ED) presentation, and outpatient visits. Regression models provided rate ratio comparison.

Results

8803 patients (8564 no implant, 190 CI, 49 SI; 2.7% implant rate) were identified with no difference in age, Charlson Comorbidity Index, insurance plan, additional cancer treatment, or metastasis. Median perioperative cost at orchiectomy (+/- implant) for no implant, CI, and SI were $5682 (3648–8554), $7823 (5403–10973), and $5380 (4130–10521), respectively (p Conclusions

CI placement has less total perioperative cost, lower explant rate, and similar postoperative utilization to SI.

Characterization of a novel bacteriophage endolysin (LysAB1245) with extended lytic activity against distinct capsular types associated with <i>Acinetobacter baumannii</i> resistance

by Rosesathorn Soontarach, Potjanee Srimanote, Buppa Arechanajan, Alisa Nakkaew, Supayang Piyawan Voravuthikunchai, Sarunyou Chusri

Capsular polysaccharides are considered as major virulence factors associated with the ability of multidrug-resistant (MDR) Acinetobacter baumannii to cause severe infections. In this study, LysAB1245, a novel bacteriophage-encoded endolysin consisting of a lysozyme-like domain from phage T1245 was successfully expressed, purified, and evaluated for its antibacterial activity against distinct capsular types associated with A. baumannii resistance. The results revealed a broad spectrum activity of LysAB1245 against all clinical MDR A. baumannii isolates belonging to capsular type (KL) 2, 3, 6, 10, 47, 49, and 52 and A. baumannii ATCC 19606. At 2 h following the treatment with 1.7 unit/reaction of LysAB1245, more than 3 log reduction in the numbers of bacterial survival was observed. In addition, LysAB1245 displayed rapid bactericidal activity within 30 min (nearly 3 log CFU/mL of bacterial reduction). Thermostability assay indicated that LysAB1245 was stable over a broad range of temperature from 4 to 70°C, while pH sensitivity assay demonstrated a wide range of pH from 4.5 to 10.5. Furthermore, both minimal inhibitory concentration (MIC) and minimal bactericidal concentration (MBC) of LysAB1245 against all MDR A. baumannii isolates and A. baumannii ATCC 19606 were 4.21 μg/mL (0.1 unit/reaction). Conclusively, these results suggest that LysAB1245 possesses potential application for the treatment of nosocomial MDR A. baumannii infections.

Understanding the uptake of virtual care for first and return outpatient appointments in child and adolescent mental health services: a mixed-methods study

Por: Campbell · L. A. · Clark · S. E. · Chorney · J. · Emberly · D. · Carrey · N. · Bagnell · A. · Blenus · J. · Daneff · M. · Campbell · J. C.
Objective

To describe patterns of virtual and in-person outpatient mental health service use and factors that may influence the choice of modality in a child and adolescent service.

Design

A pragmatic mixed-methods approach using routinely collected administrative data between 1 April 2020 and 31 March 2022 and semi-structured interviews with clients, caregivers, clinicians and staff. Interview data were coded according to the Consolidated Framework for Implementation Research (CFIR) and examined for patterns of similarity or divergence across data sources, respondents or other relevant characteristics.

Setting

Child and adolescent outpatient mental health service, Nova Scotia, Canada.

Participants

IWK Health clinicians and staff who had participated in virtual mental healthcare following its implementation in March 2020 and clients (aged 12–18 years) and caregivers of clients (aged 3–18 years) who had received treatment from an IWK outpatient clinic between 1 April 2020 and 31 March 2022 (n=1300). Participants (n=48) in semi-structured interviews included nine clients aged 13–18 years (mean 15.7 years), 10 caregivers of clients aged 5–17 years (mean 12.7 years), eight Community Mental Health and Addictions booking and registration or administrative staff and 21 clinicians.

Results

During peak pandemic activity, upwards of 90% of visits (first or return) were conducted virtually. Between waves, return appointments were more likely to be virtual than first appointments. Interview participants (n=48) reported facilitators and barriers to virtual care within the CFIR domains of ‘outer setting’ (eg, external policies, client needs and resources), ‘inner setting’ (eg, communications within the service), ‘individual characteristics’ (eg, personal attributes, knowledge and beliefs about virtual care) and ‘intervention characteristics’ (eg, relative advantage of virtual or in-person care).

Conclusions

Shared decision-making regarding treatment modality (virtual vs in-person) requires consideration of client, caregiver, clinician, appointment, health system and public health factors across episodes of care to ensure accessible, safe and high-quality mental healthcare.

Dynamic phase-locking states and personality in sub-acute mild traumatic brain injury: An exploratory study

by Harm J. van der Horn, Myrthe E. de Koning, Koen Visser, Marius G. J. Kok, Jacoba M. Spikman, Myrthe E. Scheenen, Remco J. Renken, Vince D. Calhoun, Victor M. Vergara, Joana Cabral, Andrew R. Mayer, Joukje van der Naalt

Research has shown that maladaptive personality characteristics, such as Neuroticism, are associated with poor outcome after mild traumatic brain injury (mTBI). The current exploratory study investigated the neural underpinnings of this process using dynamic functional network connectivity (dFNC) analyses of resting-state (rs) fMRI, and diffusion MRI (dMRI). Twenty-seven mTBI patients and 21 healthy controls (HC) were included. After measuring the Big Five personality dimensions, principal component analysis (PCA) was used to obtain a superordinate factor representing emotional instability, consisting of high Neuroticism, moderate Openness, and low Extraversion, Agreeableness, and Conscientiousness. Persistent symptoms were measured using the head injury symptom checklist at six months post-injury; symptom severity (i.e., sum of all items) was used for further analyses. For patients, brain MRI was performed in the sub-acute phase (~1 month) post-injury. Following parcellation of rs-fMRI using independent component analysis, leading eigenvector dynamic analysis (LEiDA) was performed to compute dynamic phase-locking brain states. Main patterns of brain diffusion were computed using tract-based spatial statistics followed by PCA. No differences in phase-locking state measures were found between patients and HC. Regarding dMRI, a trend significant decrease in fractional anisotropy was found in patients relative to HC, particularly in the fornix, genu of the corpus callosum, anterior and posterior corona radiata. Visiting one specific phase-locking state was associated with lower symptom severity after mTBI. This state was characterized by two clearly delineated communities (each community consisting of areas with synchronized phases): one representing an executive/saliency system, with a strong contribution of the insulae and basal ganglia; the other representing the canonical default mode network. In patients who scored high on emotional instability, this relationship was even more pronounced. Dynamic phase-locking states were not related to findings on dMRI. Altogether, our results provide preliminary evidence for the coupling between personality and dFNC in the development of long-term symptoms after mTBI.

Socioeconomic disparities in attention deficit hyperactivity disorder (ADHD) in Sweden: An intersectional ecological niches analysis of individual heterogeneity and discriminatory accuracy (IEN-AIHDA)

by Christoffer Hornborg, Rebecca Axrud, Raquel Pérez Vicente, Juan Merlo

We aimed (i) to gain a better understanding of the demographic and socioeconomical distribution of ADHD risk in Sweden; and (ii) to contribute to the critical discussion on medicalization, i.e., the tendency to define and treat behavioural and social problems as medical entities. For this purpose, we analysed the risk of suffering from ADHD in the whole Swedish population aged between 5 and 60 years, across 96 different strata defined by combining categories of gender, age, income, and country of birth. The stratified analysis evidenced considerable risk heterogeneity, with prevalence values ranging from 0.03% in high income immigrant women aged 50–59, to 6.18% in middle income immigrant boys aged 10–14. Our study questions the established idea that behavioural difficulties conceptualized as ADHD should be primarily perceived as a neurological abnormality. Rather, our findings suggest that there is a strong sociological component behind how some individuals become impaired and subject to medicalization.

Investigating the associations of age of initiation and other psychosocial factors of singular alcohol, tobacco and marijuana usage on polysubstance use: analysis of a population-based survey in Jamaica

Por: Lalwani · K. · Whitehorne-Smith · P. · McLeary · J.-G. · Albarus · N. · Abel · W.
Objectives

This study aimed to examine concurrent polysubstance use of alcohol, tobacco and marijuana and determine correlations with access to marijuana, friend and familial drug use habits, risk perception and the age of initiation associated with the singular use of these substances.

Design

A secondary data analysis.

Setting

Used the Jamaica National Drug Prevalence Survey 2016 dataset.

Participants

Involved the entire dataset comprising 4623 randomly selected respondents between 12 and 65 years old.

Outcome measures

Primary outcome: concurrent polysubstance use recorded as using two or more of alcohol, tobacco and marijuana. Predictor variables include risk perception and age of initiation of singular alcohol, tobacco and marijuana use, ease of marijuana access and family and friend alcohol and illegal drug use.

Results

Approximately 58%–66% of respondents commenced singular alcohol, tobacco or marijuana use under 17. Participants commencing marijuana use at 11 years and under and between 12 and 17 were 3.346 and 4.560 times more likely to report past month concurrent polysubstance use (p=0.030 and p

Conclusions

Decreased perceived risk, childhood and adolescent age of initiation and easy access to marijuana were significantly associated with polysubstance use among Jamaicans. The influence of friends and family members’ drug and alcohol use behaviours on individuals developing polysubstance use habits further endorses the need for interventions.

Barriers and facilitators in antenatal settings to screening and referral of pregnant women who use alcohol or other drugs: A qualitative study of midwives’ experience

Screening pregnant women for substance use is highly recommended in antenatal care settings. Although midwives provide routine screening for substance use and referral for treatment in pregnancy, little is known about the barriers and facilitators they experience.
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