Health Studies: Recent submissions
Now showing items 21-40 of 1474
-
Research designs of publications in radiography professional journals - A modified bibliometric analysisIntroduction: Evidence based practice relies on availability of research evidence mostly through peer-reviewed journal publications. No consensus currently exists on the best hierarchy of research evidence, often categorised by the adopted research designs. Analysing the prevalent research designs in radiography professional journals is one vital step in considering an evidence hierarchy specific to the radiography profession and this forms the aim of this study. Methods: Bibliometric data of publications in three Radiography professional journals within a 10-year period were extracted. The Digital Object Identifier were used to locate papers on publishers' websites and obtain relevant data for analysis. Descriptive analysis using frequencies and percentages were used to represent data while Chi-square was used to analyse relationship between categorical variables. Results: 1830 articles met the pre-set inclusion criteria. Quantitative descriptive studies were the most published design (26.6%) followed by non-RCT experimental studies (18.7%), while Randomised Controlled Trials (RCT) were the least published (1.0%). Systematic reviews (42.9%) showed the highest average percentage increase within the 10-year period, however RCTs showed no net increase. Single-centre studies predominated among experimental studies (RCT = 88.9%; Non-RCT = 95%). Author collaboration across all study designs was notable, with RCTs showing the most (100%). Quantitative and qualitative studies comparatively had similar number of citations when publication numbers were matched. Quantitative descriptive studies had the highest cumulative citations while RCTs had the least. Conclusion: There is a case to advocate for more study designs towards the peak of evidence hierarchies such as systematic reviews and RCT. Radiography research should be primarily designed to answer pertinent questions and improve the validity of the profession's evidence base. Implication for practice The evidence presented can encourage the adoption of the research designs that enhances radiography profession's evidence base.
-
Recognition of advanced level practice against multiprofessional capabilities: Experiences of the first radiography applicantsIntroduction: Advanced practice is well established in the health professions with multiprofessional capabilities in place in England. To recognise achievement of these capabilities an ePortfolio (supported) route was initiated in 2022. This study aimed to review the demographics and experiences of radiographers applying for recognition in the first year of operation. Methods: The multi method evaluation consisted of quantitative data analysis of information regarding the first three cohorts of radiographers (n = 40) participating in the NHS England (NHSE) scheme. Interviews with 12 participants was undertaken with thematic analysis of the transcripts. Results: Self-rated scores of expertise were significantly higher by therapeutic radiographers (n = 8) compared to their 32 diagnostic colleagues (t = 5.556; p < 0.01). Radiographers saw the ePortfolio as an opportunity to validate their experience and to evidence parity with other professions. Participants felt the process also enabled critical reflection and gave unseen insight into themselves and their roles. The support of experienced educational supervisors was felt to be vital in this process and for successful completion of portfolio. Conclusions: Several radiographers have now achieved the necessary standards to achieve NHSE recognition. The evaluation exposed that most radiographers did not have the relevant evidence to hand and the ongoing collection of evidence around capabilities and impact is critical to evidencing advanced practice capabilities. Implications for practice: Radiographers are able to achieve the capabilities expected for multiprofessional practice. Cultural change is required to normalise recording of evidence within practice including case-based discussions, clinical supervision and feedback from colleagues and patients. The support of an experienced educational supervisor aided the critical reflection on practice level.
-
Mapping the migrant diagnostic radiographers in the UK: A national surveyIntroduction: The international recruitment of healthcare workers remains a UK strategy to manage workforce gaps and maintain service delivery. Although not a new phenomenon, this has been exacerbated by chronic shortages. There is a need to profile the current international recruits and identify individual motivators to understand the opportunities for future recruitment and retention initiatives. Method: A UK-wide electronic survey was conducted using the Jisc platform. The survey was promoted using social media and researcher networks. Eligibility criteria were diagnostic radiographers, internationally educated, and currently working in the UK. Results: 226 responses were received. Most were working in England (90.7%) and 58.0% were under 35 years of age. The majority had migrated having moved to the UK since 2020 (63.7%) and the main drivers were career and/or training opportunities. Initial education was in 30 different countries, the highest number originating from Africa and Asia, with a median of 6 years post-qualification experience (IQR 4–11yrs). Despite experience, most were employed in band 5 (n = 72) or band 6 posts (n = 95). 56% had postgraduate qualifications on entry and a third had undertaken postgraduate study in the UK. Conclusion: Based on the survey responses, the profile of internationally recruited diagnostic radiographers is relatively young but with pre-migration experience originating all over the globe. They are motivated to work in the UK particular for career progression opportunities. Implications for practice: This study provides an insight into the motivations, demographics and employment patterns of internationally recruited radiographers working in the UK.
-
Factors that influence the quality of the clinical supervision experience in a first contact physiotherapy (FCP) role - The perspectives of supervisors and supervisees – A qualitative analysisPurpose: First contact practitioner (FCP) roles have been developed to supplement the primary care workforce in managing the burden of musculoskeletal conditions. In order to quality assure and standardise capability of these clinicians an educational framework was developed by NHS England. The Roadmap to Practice (2020) was the curriculum designed to support and develop capability for FCP roles. This secondary analysis of a broader research project aimed to understand the factors affecting the supervisory experience from both a supervisor and supervisee perspective. Methods: A qualitative design using group interviews and an online survey was utilised to examine the experiences of these clinicians on their journey navigating and supporting the Roadmap to Practice portfolio process. Findings: Three principal themes were identified that affected the supervisory process; preparation of both supervisors and supervisee; the person (supervisor) and the practicalities associated with supervision. Conclusion: There were numerous factors influencing the quality of clinical supervision. Adequate preparation of the supervisor and supervisee is critical to success. The attributes of the supervisor were important in the enhancing the quality of supervisory process. Time afforded to undertake supervision and access to appropriate supervisors need to be adequate and accounted for in workforce planning. A paradigm shift in workplace culture is required so clinical supervision is seen as an integral component in maintaining quality and assuring patient safety.
-
Establishing the size and configuration of the imaging support workforce: a census of national workforce data in EnglandObjectives: The imaging support workforce is a key enabler in unlocking imaging capacity and capability, yet no evidence exists of the workforce size and configuration. This research provides the first comprehensive analysis of workforce data to explore the deployment of the support workforce within National Health Service (NHS) imaging services in England. Methods: Using a census methodology, an anonymized electronic staff record (ESR) data set extracted in December 2022 was analysed to identify support workers and their employment bandings at NHS Trust, regional and national (England) level. Support workforce proportions, median values, and Spearman’s rank correlations were calculated. Results: Analysis of 137 NHS Trusts, comprising 100% of acute trusts (n = 124) and specialist trusts with imaging services (n = 13), identified that the support workforce (pay bands 2-4) constitutes 23.6% of the imaging staff base. Ranking trusts into 3 categories based on the proportion of support workers in their imaging establishment, median values ranged from 30.7% (high) to 22.2% (medium) and 10.5% (low). Two opposing deployment models of band 2 and band 3 support workers were identified. Conclusions: Comprising almost one-quarter of the imaging establishment, models of deployment at bands 2 and 3 are highly variable. Assistant practitioners (band 4) are under-utilised, providing an opportunity to introduce innovations to address workforce demands. Advances in knowledge: This census is the first to provide evidence of the size and structure of the support workforce, the first step in enabling effective workforce transformation. Further research is required to explain the two opposing deployment models.
-
A systematic review comparing the effective radiation dose of musculoskeletal cone beam computed tomography to other diagnostic imaging modalitiesPurpose: Cone-Beam CT (CBCT) is well established in orofacial diagnostic imaging and is currently expanding into musculoskeletal applications. This systematic review sought to update the knowledge base on radiation dose comparisons between imaging modalities in MSK imaging and consider how research studies have reported dose measures. Methods: This review utilised a database search and an online literature tool. Studies with potential relevance were screened then before full text review, each performed by two independent reviewers, with a third independent reviewer available for conflicts. Data was extracted using a bespoke tool created within the literature tool. Results: 21 studies were included in the review which compared CBCT with MSCT (13), conventional radiography (1), or both (7). 19 studies concluded that CBCT provided a reduced radiation dose when compared with MSCT: the factor of reduction ranging from 1.71 to 50 with an average of 12. Studies comparing CBCT to DR found DR to have an average dose reduction of 4.55. Conclusions: The claims that CBCT produces a lower radiation dose than MSCT is borne out with most studies confirming doses less than half that of MSCT. Fewer studies include DR as a comparator but confirm that CBCT results in a higher effective dose on average, with scope for CBCT to provide an equivalent radiation dose. This review highlighted a need for consistency in methodology when conducting studies which compare radiation dose across different technologies. Potential solutions lie outside the scope of this review, likely requiring multi-discipline approach to ensure a cohesive outcome.
-
Has the skills mix promise been broken? A scoping review of the deployment of the support and assistant workforce within diagnostic imaging in the UKIntroduction: In the UK the development of skill mix in radiography at the end of the 20th century formalised the assistant practitioner role, separating it from the support worker function. The key aim was to increase imaging capacity whilst enabling opportunities for career progression within both the support and radiography workforce. There has been limited examination of these support and assistive roles and this review aims to explore the current evidence. Methods: This scoping review used a systematic search strategy and interrogated MEDLINE, CINAHL, Scopus and Google Scholar. Primary research articles published in the English-language referring to studies conducted in the UK on assistant or support roles in radiography were sought. The sourced data was uploaded to a web-based review platform for screening. Results: The literature search identified only 11 articles which met the search criteria, of which only one referred to the support worker role. Adopting a primarily qualitative approach the quality of the articles varied. Thematic analysis was undertaken using a priori themes role purpose, outcomes, aspirations and capacity building. Conclusion: There is limited research evidence of capacity generation with most presenting individual perspectives. Job satisfaction and career aspirations within the support and assistive workforce are evident but there is still confusion over scope of practice and supervision. Implications for practice: The support and assistive workforce are a key part of the diagnostic imaging workforce but limited research evidence examining these roles has been published. Further research exploring the impact of skill mix changes across all levels and imaging professions is required.
-
Reminiscence respecified: A conversation analytic examination of practice in a specialist dementia care homeAlthough discussion of reminiscence is prevalent in dementia care research, few studies have examined what actually occurs in these interactions, and how they are structured. This study examined how reminiscence activities are structured and negotiated in a care home environment. Informal one-to-one reminiscence interactions between people living with dementia and professional carers were transcribed from a larger video dataset. We used Conversation Analysis to examine reminiscence sequences in a novel relational approach that explored the interactional practices used by carers and people living with dementia. We identified divergences between manualised practice recommendations and observed interactional practices, such as the rarity of open questions, and frequent use of closed questions. This was contrary to current practice recommendations. These and other divergences demonstrate the value of interactional research in informing reminiscence practice and training manuals. By examining how reminiscence operates in practice, our approaches to conducting such activities can be more empirically informed. Our findings can be used to advise and guide those doing reminiscence work in care home settings, and improve the inclusiveness of reminiscence interactions. Through incorporating empirically informed techniques that both carers and people with dementia use in practice, we can facilitate interactions around memories which are supportive of people with dementia's identity.
-
A comparison of written case notes and the delivery of care in dementia specialist mental health wardsIntroduction: Stigmatising language concerning people living with dementia can cause potentially harmful and dehumanising consequences. Language used about people living with dementia in mental health wards may focus on medical perspectives and suggest custodial relationships with patients rather than person-centred accounts of individuals. This language could have a devastating impact on the provision of person-centred care. This study investigated the relationship between accounts of people living with dementia written in healthcare case notes and clinical practice at three dementia specialist wards in Wales, UK. Language guidance was provided to ward staff to assess whether stigmatising language could be reduced and whether this influenced the provision of person-centred care. Methodology: Dementia Care Mapping was adapted to analyse case note entries for enhancing and detracting accounts of people living with dementia at three data collection points. These were compared to the results of routine DCM observations of care across the three wards. The healthcare case notes of 117 people living with dementia, encompassing 4, 522 entries over ten months were analysed. DCM observations of 38 people living with dementia within the three wards were compared against the case note results. Person-centred language guidance was shared with care staff following each data collection point. Results: Following the provision of person-centered language guidance, the use of personally enhancing language was observed to increase across all three wards. Non-person-centred case note entries predominantly focussed on Labelling language, whilst language concerning Invalidation and Objectification also occurred frequently compared to other DCM domains. Person centred language typically concerned Acknowledgement. A relationship between case note entries and practice was evident in some domains although findings were inconsistent. Discussion and Implications: The findings highlight the importance of addressing stigmatising language in healthcare and suggest that further studies to support the anti-stigma agenda in dementia care are required.
-
Embodied leisure experiences of nature-based activities for people living with dementiaPurpose This article adopts an embodiment lens to explore the individual leisure experiences of people living with dementia when engaging in nature-based pursuits. It focuses on how people living with dementia frame their everyday experiences of nature and how these are shaped by any cognitive challenges and/or other comorbidities affecting physical health. Design/methodology/approach Taking a phenomenological research approach, we interviewed 15 people living with dementia and 15 family carers of people with dementia to explore how people with dementia engage with nature as a subjective leisure experience. We analysed their accounts using reflexive thematic analysis. Findings The findings reveal how people living with dementia frame their experiences of nature-based pursuits through three interlinked themes of ‘bodily feelings and emotions’, ‘sense of self and identity’ and ‘connectivity to others’. Originality/value The paper contributes to knowledge by examining through the lens of embodiment a neglected and overlooked dimension of everyday leisure: how nature is encountered, negotiated and enjoyed. The paper illustrates how nature and the outdoors may help people living with dementia to continue to enjoy prior leisure pursuits and thus achieve a degree of continuity in their everyday lives.
-
Perspectives of minority ethnic caregivers of people with dementia interviewed as part of the IDEAL programmePostwar migrants from the Caribbean and Indian subcontinent (Bangladesh, India, and Pakistan) to the UK are now experiencing the onset of age-related diseases such as dementia. Our evidence base, both quantitative and qualitative, documenting the experiences of family caregivers of people with dementia is largely drawn from studies undertaken with white European, North American, and Australasian populations. Consequently, there is a need for research in the field of dementia caregiving to reflect the increasing diversity in ethnic identities of the older adult population of the UK. Using semistructured interviews, we investigated the experiences of 18 caregivers of people with dementia in Black Caribbean, Black African, and South Asian (Indian, Pakistani, and Bangladeshi) communities in England. Participants were recruited from the Join Dementia Research platform and were predominantly female intergenerational carers. We identified the following three themes: motivation to care (spending time with the care recipient and reciprocity), positive and negative consequences of caregiving (rewards and consequences), and the cultural context of caregiving (cultural norms and values supporting caregiving and negative attitudes towards dementia). Our findings develop existing literature by identifying (a) the importance of spending time with the person they care for, (b) the absence of faith as a caregiving driver, and (c) the challenge of watching the declining health of a parent. We highlight how the different motivations to care are intertwined and dynamic. This is illustrated by the linking of obligation and reciprocity in our dataset and positive and negative experiences of caregiving.
-
Longitudinal Trajectories of Stress and Positive Aspects of Dementia Caregiving: Findings From the IDEAL ProgrammeUnderstanding what influences changes over time in caregiver well-being is important for the development of effective support. This study explores differences in trajectories of caregiver stress and positive aspects of caregiving (PAC). Methods Caregivers of community-dwelling individuals with mild-to-moderate dementia at baseline from the IDEAL cohort were interviewed at baseline (n = 1,203), 12 months (n = 917), and 24 months (n = 699). Growth mixture models identified multiple growth trajectories of caregiver stress and PAC in the caregiver population. Associations between study measures and trajectory classes were examined using multinomial logistic regression and mixed-effects models. Results Mean stress scores increased over time. A 4-class solution was identified: a “high” stable class (8.3%) with high levels of stress, a “middle” class (46.1%) with slightly increasing levels of stress, a “low” class (39.5%) with initial low levels of stress which slightly increased over time, and a small “increasing” class (6.1%) where stress level started low but increased at a steeper rate. Mean PAC scores remained stable over time. A 5-class solution was identified: 3 stable classes (“high,” 15.2%; “middle,” 67.6%; “low” 9.3%), a small “increasing” (3.4%) class, and 1 “decreasing” class (4.5%). For stable classes, positive ratings on study measures tended to be associated with lower stress or higher PAC trajectories and vice versa. Those with “increasing” stress also had worsening trajectories of several study measures including depression, relationship quality, competence, and ability to cope. Discussion The findings highlight the importance of identifying caregivers at risk of increased stress and declining PAC and offering them targeted support.
-
Proportion of Antipsychotics with CYP2D6 Pharmacogenetic (PGx) Associations Prescribed in an Early Intervention in Psychosis (EIP) Cohort: A Cross-Sectional StudyBackground: Prescribing drugs for psychosis (antipsychotics) is challenging due to high rates of poor treatment outcomes, which are in part explained by an individual’s genetics. Pharmacogenomic (PGx) testing can help clinicians tailor the choice or dose of psychosis drugs to an individual’s genetics, particularly psychosis drugs with known variable response due to CYP2D6 gene variants (‘CYP2D6-PGx antipsychotics’). Aims: This study aims to investigate differences between demographic groups prescribed ‘CYP2D6-PGx antipsychotics’ and estimate the proportion of patients eligible for PGx testing based on current pharmacogenomics guidance. Methods: A cross-sectional study took place extracting data from 243 patients’ medical records to explore psychosis drug prescribing, including drug transitions. Demographic data such as age, sex, ethnicity, and clinical sub-team were collected and summarised. Descriptive statistics explored the proportion of ‘CYP2D6-PGx antipsychotic’ prescribing and the nature of transitions. We used logistic regression analysis to investigate associations between demographic variables and prescription of ‘CYP2D6-PGx antipsychotic’ versus ‘non-CYP2D6-PGx antipsychotic’. Results: Two-thirds (164) of patients had been prescribed a ‘CYP2D6-PGx antipsychotic’ (aripiprazole, risperidone, haloperidol or zuclopenthixol). Over a fifth (23%) of patients would have met the suggested criteria for PGx testing, following two psychosis drug trials. There were no statistically significant differences between age, sex, or ethnicity in the likelihood of being prescribed a ‘CYP2D6-PGx antipsychotic’. Conclusions: This study demonstrated high rates of prescribing ‘CYP2D6-PGx-antipsychotics’ in an EIP cohort, providing
-
What factors influence pain scores following Corticosteroid injection in patients with Greater Trochanteric Pain Syndrome? A systematic ReviewCortico-steroid Injections (CSI) are commonly used to treat patients with Greater Trochanteric Pain Syndrome (GTPS) but it is unclear which patients will experience improvements in pain Objectives: To identify factors that influence improvements in pain for patients with GTPS treated with CSI Design: Systematic review Methods: A search was undertaken of AMED, CINAHL, Cochrane Library, EMBASE, Medline and PEDro databases. Studies were eligible for inclusion of they investigated factors that influenced changes in pain experienced by patients who received a CSI. Studies needed to include relevant summary statistics and tests of clinical significance. Risk Of Bias in Non-randomised Trials Of Interventions (ROBINS-I) and Risk of Bias 2 (ROB2) tools were used to assess bias. Results: The search identified 466 studies, 8 were included in the final review with a total of 643 participants. There was no association between demographic variables such as age, sex, symptom duration or obesity and pain outcomes post-CSI. Having a co-existing musculoskeletal (MSK) condition such as knee osteoarthritis or sacroiliac/lumbar spine pain was associated with less pain reduction post-CSI. Injections into the Trochanteric Bursa were associated with longer lasting pain reduction than Gluteus Medius Bursa or extra-bursal injections. Image guidance of CSI maintained lower pain scores at six months but did not increase the duration of the therapeutic effect past six months. The presence of specific ultrasound scan features was not associated with differences in pain scores. Conclusions: Patients with co-existing MSK conditions may not respond to CSI as well as those without. Injections into the Greater Trochanteric Bursa may have longer lasting benefit. Further research is needed on the use of USS imaging findings and image guidance.
-
Ethical and quality of care-related challenges of digital health twins in older care settings: Protocol for a scoping reviewDigital health twins (DHTs) have been evolving with their diverse applications in medicine, specifically in older care settings, with the increasing demands of older adults. DHTs have already contributed to improving the quality of dementia and trauma care, cardiac treatment, and health care services for older individuals. Despite its many benefits, the optimum implementation of DHTs has faced several challenges associated with ethical issues, quality of care, management and leadership, and design considerations in older care settings. Since the need for such care is continuously rising and there is evident potential for DHTs to meet those needs, this review aims to map key concepts to address the gaps in the research knowledge to improve DHT implementation. The review aims to compile and synthesize the best available evidence regarding the problems encountered by older adults and care providers associated with the application of DHTs. The synthesis will collate the evidence of the issues associated with quality of care, the ethical implications of DHTs, and the strategies undertaken to overcome those challenges in older care settings. The review will follow the Joanna Briggs Institute (JBI) methodology. The published studies will be searched through CINAHL, MEDLINE, JBI, and Web of Science, and the unpublished studies through Mednar, Trove, OCLC WorldCat, and Dissertations and Theses. Studies published in English from 2002 will be considered. This review will include studies of older individuals (aged 65 years or older) undergoing care delivery associated with DHTs and their respective care providers. The concept will include the application of the technology, and the context will involve studies based on the older care setting. A broad scope of evidence, including quantitative, qualitative, text and opinion studies, will be considered. A total of 2 independent reviewers will screen the titles and s and then review the full text. Data will be extracted from the included studies using a data extraction tool developed for this study. The results will be presented in a PRISMA-ScR (Preferred Reporting Items for Systematic Review and Meta-Analysis extension for Scoping Reviews) flow diagram. A draft charting table will be developed as a data extraction tool. The results will be presented as a "map" of the data in a logical, diagrammatic, or tabular form in a descriptive format. The evidence synthesis is expected to uncover the shreds of evidence required to address the ethical and care quality-related challenges associated with applying DHTs. A synthesis of various strategies used to overcome identified challenges will provide more prospects for adopting them elsewhere and create a resource allocation model for older individuals. DERR1-10.2196/51153.
-
Characterizing patient details-related challenges from health information technology-related incident reports from Swedish healthcareDespite many benefits offered by Health Information Technology (HIT) systems, new technology brings new and unforeseen risks to healthcare quality and patient safety if they're not properly planned, designed, implemented, and managed. This study examined health information technology-related (HIT) incidents to identify patient details-related issues, their association with contributing factors, and outcomes. Sources of information comprised retrospectively collected incident reports (n = 95) using two sampling methods, i.e., purposive and snowball sampling. The incident reports were analyzed using both the inductive method (thematic analysis) and the deductive approach using an existing framework, i.e., the International Classification for Patient Safety. The studies identified 90 incidents with 120 patient details-related issues-categorized as either information-related (48%) or documentation-related (52%) problems; around two-thirds of the 120 issues were characterized by human factors. Of the total sample, 87 contributing factors were identified, of which "medical device/system" (45%) and "documentation" (20%) were the most common contributing factors. Of 90 incidents, more than half (59%) comprised patient-related outcomes-patient inconvenience (47%) and patient harm (12%) and the remaining 41% (n = 37) included staff or organization-related outcomes. More than half of the incidents resulted in patient-related outcomes, namely patient inconvenience and patient harm, including disease risks, severe health deterioration, injury, and even patient death. Incidents associated with patient details can cause deleterious effects; therefore, characterizing them should be a routine part of clinical practice to improve the constantly changing healthcare system.
-
Hepatitis B virus infection on Kwajalein Atoll, Marshall Islands: a seroprevalence, knowledge and attitudes studyA study was conducted to determine the seroprevalence of chronic hepatitis B virus (HBV) infection among children and their mothers on Kwajalein Atoll in the Marshall Islands two decades after routine vaccination was introduced in the 1990s. Mothers’ knowledge and attitudes towards HBV disease and vaccination were also assessed. Methods: Results of a national seroprevalence survey conducted in 2016–2017 and antenatal records were used to determine the prevalence of HBV seropositivity in children aged 6–8 years and their biological mothers. The associations between demographic, social and vaccination-related factors and seropositivity were explored using Fisher’s exact tests. Results: HBV seroprevalence was 0.3% in children and 6.8% in their mothers (during pregnancy). Coverage of timely HBV vaccination was 90.3% for the birth dose and was significantly associated with factors related to place of residence (P < 0.001), place of birth (P < 0.001) and number of antenatal visits (P < 0.001). Maternal attitudes towards infant vaccination and antenatal screening were largely positive (95.8% and 96.7%, respectively) despite low vaccination rates (20.9%) among mothers. Knowledge levels were low for disease complications, treatment and transmission. Discussion: Prevalence of HBV in children and mothers residing on Kwajalein Atoll in 2016–2017 was lower than the national average for the Marshall Islands. Timely birth dose administration appears to have been effective in preventing mother-to-child transmission of HBV in this setting and should be promoted in remote settings where antiviral therapy is not available. Provision of out-of-cold-chain HBV vaccines should be considered to improve access in remote settings.
-
Health conditions in spousal caregivers of people with dementia and their relationships with stress, caregiving experiences, and social networks: longitudinal findings from the IDEAL programmeObjectives: Longitudinal evidence documenting health conditions in spousal caregivers of people with dementia and whether these influence caregivers’ outcomes is scarce. This study explores type and number of health conditions over two years in caregivers of people with dementia and subgroups based on age, sex, education, hours of care, informant-rated functional ability, neuropsychiatric symptoms, cognition of the person with dementia, and length of diagnosis in the person with dementia. It also explores whether over time the number of health conditions is associated with caregivers’ stress, positive experiences of caregiving, and social networks Methods: Longitudinal data from the IDEAL (Improving the experience of Dementia and Enhancing Active Life) cohort were used. Participants comprised spousal caregivers (n = 977) of people with dementia. Self-reported health conditions using the Charlson Comorbidity Index, stress, positive experiences of caregiving, and social network were assessed over two years. Mixed effect models were used Results: On average participants had 1.5 health conditions at baseline; increasing to 2.1 conditions over two years. More health conditions were reported by caregivers who were older, had no formal education, provided 10 + hours of care per day, and/or cared for a person with more neuropsychiatric symptoms at baseline. More baseline health conditions were associated with greater stress at baseline but not with stress over time. Over two years, when caregivers’ health conditions increased, their stress increased whereas their social network diminished Discussion: Findings highlight that most caregivers have their own health problems which require management to avoid increased stress and shrinking of social networks
-
The diagnostic pathway experiences of people living with rare dementia and their family caregivers: A cross-sectional mixed methods study using qualitative and economic analysesThe pathways for receiving a diagnosis of a rare type of dementia are poorly understood. Diagnostic challenges decrease access to relevant health promotion activities and post-diagnostic support. This study was focused on pathways experienced by people affected by rare dementia in Wales, United Kingdom (UK), considering the practical, emotional, and economic consequences. Semi-structured interviews were completed with 10 people affected by rare dementia across Wales, UK (nine family caregivers and one person living with rare dementia). The interview data were subject to a thematic analysis and a bottom-up costing approach was used to cost the pathway journeys. Five transitional points occurred across the diagnostic pathway (initial contact, initial referral, further referrals—provider, further referrals—private, and diagnosis) alongside two further themes (i.e., involved in the diagnostic process and disputes between stakeholders). The timeliness of the diagnosis was perceived to often be subject to ‘luck’, with access to private healthcare a personal finance option to expedite the process. Higher economic costs were observed when, in retrospect, inappropriate referrals were made, or multiple referrals were required. The confusion and disputes relating to individual diagnostic pathways led to further emotional burdens, suggesting that higher economic costs and emotional consequences are interlinked. Clearer diagnostic pathways for rare dementia may prevent unnecessary service contacts, waiting times, and associated distress. Prioritising appropriate and timely service contacts leads to diagnosis and support to families and enables people to increase control over their health. Appropriate diagnostic pathways may be less costly and reduce costs for families.
-
Social care planning and provision for people with young onset dementia and their families: Protocol for the DYNAMIC studySocial care is vital to quality of life for people with young onset dementia and their families. Yet care is hugely variable, frequently lacking and poorly coordinated. We aim to establish current practice in English social care for people with young onset dementia and co-produce evidence-based recommendations and resources for improvement. In Work-Package 1, we will gather qualitative data from 25 people with young onset dementia and/or main supporters residing in England. We will ask them about their experiences of social care (broadly defined, including independent and voluntary sector provision) and suggestions for improvement. In Work-Package 2, we will conduct a short on-line survey with a wide range of staff with a role in adult social care in England. We will find out about current awareness, knowledge and practice and suggestions for improvements. Quantitative and qualitative analysis will provide a picture of current practice. In Work-Package 3, we will use convergence analysis to synthesise the findings from Work-Packages 1 and 2 and present the findings to a stakeholder workshop, to identify feasible priorities for improvement. We will establish what is already known about good practice relating to these key priorities using a scoping review and interviews with professionals. This knowledge will then feed into the co-production of resources and recommendations with key stakeholders to improve social care for people with young onset dementia and their families. This study seeks to address a gap in our understanding of social care provision for people with young onset dementia and develop recommendations and practical resources for improvements. The findings will help people with young onset dementia and supporters to receive higher quality social care. Study registration number: ISRCTN10653250.