BACKGROUNDPeople living with HIV experience higher rates of cognitive impairment (CI), and at younger ages, than the general population. These individuals report poor health-related quality of life ...(HRQL), however, interventions aimed at assisting people living with HIV to live well with CI do not currently exist and represent an important un-met need in this population.OBJECTIVEThis study aimed to identify the lived experience research priorities for improving HRQL and identify interventions to support priority areas.METHODSA Research Advisory Group was established with 15 lived experience, academic, healthcare, and third sector professionals. Additionally, two semi-structured focus groups were undertaken, with health and third sector professionals and people living with HIV with CI. Participants were asked to rank factors impacting HRQL, identified in prior research, in terms of priority and intervention development. Findings were analysed using a combination of conventional and summative content analysis. Study findings were feedback to our Research Advisory Group.RESULTSFive people living with HIV with CI, recruited through third sector agencies Male 80%; median age 59 (range 56-78); White British 60%; homosexual 60%, and three healthcare and third sector participants (66% third sector professionals from two local HIV charities; 33% HIV-specific clinical psychologist) took part in two focus groups and ranked interventions targeting improvement in physical function, social connectedness, cognition and perceived control over cognitive health as priority areas. Findings were then fed back to the Research Advisory Group who recommended the development of an illness-specific cognitive rehabilitation programme and improved information provision as important avenues for intervention development.CONCLUSIONGiven the absence of meaningful patient and public involvement, intervention, and support guidelines for people living with HIV with CI, this provides a roadmap for future research in this important and growing area of HIV clinical care.
ObjectivesThe COVID-19 pandemic has led to significant disruption to health and social care services. For people with dementia and their family carers this is problematic, as a group who rely on ...timely and responsive services to live well with the condition. This study has sought to understand how COVID-19 has affected the quality of life of people diagnosed with dementia and their family carers.DesignOur mixed-methods study was nested in a larger cohort study of an education programme, Time for Dementia.SettingThe study took place in the South-East of England.ParticipantsExisting study participants, family carers were approached about the COVID-19 nested study. A purposeful sample of participants were invited to take part in in-depth qualitative interview. The sample included family carers in a range of different caring situations.MeasurementInterviews were undertaken remotely by telephone. Interviews sought to understand quality of life before the pandemic, impact of the restrictions on both the person with dementia and family carer, role of services and other agencies as well as supportive factors. Data were analysed using thematic analysis.Results16 family carers were interviewed. Seven themes were identified from our analysis: (1) decreased social interaction; (2) reduced support; (3) deteriorating cognitive and physical health for the person with dementia; (4) decreased carer well-being; (5) difficulties understanding COVID-19 restrictions; (6) limited impact for some and (7) trust and relationship with care home. There was little change between themes during the first and second wave of national lockdowns.ConclusionsOur study provides an understanding the short-term impact of COVID-19 on the quality of life of people with dementia and their family carers. Our findings suggest that recovery between the first and second wave of the restrictions did not automatically take place.
The global prevalence of autism is reported to be at least 1% and is rising. Autistic people have a range of comorbidities resulting in a high use of health services. Doctors of nearly all ...specialties are likely to encounter autistic people in their practice. Autistic people report dissatisfactory care and encounter disproportionately worse health-related outcomes than non-autistic people, which in part has been attributed to a lack of skill and awareness in the medical workforce. At present, autism education is not always included in undergraduate medical curricula. In England, the Department of Health and Social Care has mandated that autism education should be included in all undergraduate medical curricula but current evidence relating to the delivery and receipt of autism education is poor. A greater understanding of medical student perceptions of autism education is required to inform curriculum development. This qualitative study sought to explore the perceptions of autism education in final year medical students at a medical school in South-East England by 1) assessing their perceived preparedness to care for autistic people once they have graduated from medical school and 2) determining their perceived acceptability of a new undergraduate education programme, Time for Autism (TfA).
A purposeful sample of ten final-year medical students were recruited. Students completed in-depth, individual interviews. Data was analysed using thematic analysis.
Four key themes were identified: Learning environment, Exposure, Relevance and Curricular priority. The findings of this study indicate that medical students perceived greatest value in autism education when it was directly relevant to developing preparedness for practice. Value was influenced by the perceived curricular priority attached to autism education. The new autism programme, Time for Autism was perceived to add relevance and priority to autism education in the existing curriculum in this medical school setting.
The study findings shed new light on medical education literature, emphasising the importance of congruence between the provision of autism education and the prioritisation of autism education within the curriculum. Consideration of relevance and curricular priority can be used to support the development of autism education in future medical curricula.
BackgroundAutistic adults and children experience considerable health inequalities and have high rates of premature mortality, hospital admissions and emergency department visits. This is in part due ...to a lack of autism awareness in the healthcare and social care workforce. A new educational programme, Time for Autism (TfA), for medical students is being developed to address this challenge. This qualitative study was undertaken to support the development of the new programme in order to (1) understand the medical care experiences of parents of autistic children and (2) assess their views on the acceptability of the new TfA programme and willingness to be involved.MethodsA convenience sample of 11 parents of autistic children were recruited across the South of England. The ages of the autistic children ranged from 3 to 17 years. Semistructured interviews were completed between October and December 2019. Interview transcripts were analysed using thematic analysis.ResultsThree key themes were identified: diagnosis, experiences of doctors and TfA considerations. There was support for and willingness to take part in a dedicated autism education programme for medical students, and constructive feedback to inform and improve its delivery.ConclusionThe findings from this study provide insights into the medical care experiences of parents/carers of autistic children. Understanding how parents/carers of autistic children would like medical care to be improved can be used to develop TfA and other autism programmes. Parental/carer support for the development of and involvement in an autism medical education programme enhances the feasibility of the new programme.
The increase in the number of people living with dementia has resulted in a greater need for healthcare professionals from all disciplines to meet the needs of those living with the condition. This ...means a workforce which is competent in delivering dementia care which is person-centred, regardless clinical specialism. The aim of scoping review is to provide an overview of the novel education models being used to ensure the future healthcare workforce are able to meet this aspiration.
Online databases PubMed, Web of Science, CINAHL, Medline, PsychInfo, ERIC were used.
Search terms ‘Healthcare Student(s)’, ‘Dementia or Alzheimer's Education’ were used. Inclusion criteria included papers published in English between 2009 and September 2019, with data pertaining to the assessment of dementia knowledge and attitudes among healthcare students. Abstracts were reviewed and identified for inclusion for full-text review. Included studies were assessed using the MMAT (Mixed Methods Appraisal Tool).
27 studies were included within the review. These were groups into five educational categories; long term experiential (n=5), activity-centered programmes with people with dementia (n=11), interprofessional education (IPE) (n=5), immersive conference style programmes (n=3) and dementia simulation (n=3). Long term experiential and activity centered programmes gave students the greatest increase in perceived confidence, and improvement in dementia attitudes. Programmes were most effective when directly involving people living with dementia.
The majority of the education programmes showed a potential benefit in improving either knowledge, confidence, attitude, or all three among healthcare students. This highlights the benefit that novel experiential programmes may have in aiding a culture of positive attitudes among future healthcare professionals who will be treating people with dementia. This review also demonstrates the positive benefit that directly involving people living with dementia within education can have on both student learners.
•Overview of innovation in undergraduate dementia education over the last decade•Demonstrates the increasing involvement of people with dementia and their carers in undergraduate healthcare education•Gives prominence to the emergence of creative activity-based learning with students and people with dementia
Taking advantage of the rapidly increasing access to digital technology in low- and middle-income countries, the World Health Organization has launched an electronic version of the mental health Gap ...Action Programme intervention guide (emhGAP-IG). This is suitable for use on smartphones or tablets by non-specialist primary healthcare providers (PHCWs) to deliver evidence-based intervention for priority mental, neurological and substance use disorders. We assessed the perceptions of PHCWs on the feasibility, acceptability, and benefits of using smartphone-based clinical guidance and the emhGAP-IG in the management of people with mental health conditions in Nigeria. METHODS: Exploration of the views of PHCWs from 12 rural and urban primary health clinics (PHCs) in South-Western Nigeria were carried out using 34 in-depth key informant qualitative interviews with nurses (n = 10), community health officers (n = 13) and community health extension workers (n = 11). An additional two focus group discussions, each comprising eight participants drawn from across the range of characteristics of PHCWs, were also conducted. Thematic analysis was conducted using a three-staged constant comparison technique to refine and categorise the data.
Three overall themes were identified around the use of clinical guidance and mobile applications (apps) in PHCs. Apps were deployed for purposes other than clinical consultation and decision making. Although paper-based guidance was the expected practice, its utilization is not fully embedded in routine care. An app-based decision-making tool was preferred to paper by PHCWs. Future usage of the emhGAP-IG would be facilitated by training and supporting of staff, helpful design features, and obtaining patients' buy-in.
Our findings suggest that the emhGAP-IG could be a viable way to embed clinical guidance and decision-making tools in the management of people with mental health conditions in Nigerian PHCs.
This study aimed to validate and assess a comprehensive set of illness-specific health-related quality of life (HRQL) domains in people living with HIV (PLWH) with cognitive symptoms. One hundred and ...three HIV patients with cognitive symptoms (n = 93 male, 90.3%) were identified from two UK HIV clinics and complete a series of validated scales measuring seven HRQL domains identified as important to HRQL by PLWH with cognitive impairment. These included: physical functioning, cognition, social connectedness, self-concept, HIV stigma, acceptance of and perceived control over cognitive health, and physical and mental health and wellbeing. Exploratory factor analysis confirmed that domain total scores loaded onto one main factor, representing HRQL. Scale cut-off scores revealed a significant proportion of patients scored outside the normal range on single domains (between 26.2% and 79.6%), and many patients on multiple domains (40.8% on 4 or more domains). We found evidence of poor HRQL across domains in the majority of PLWH with cognitive symptoms and identified domains driving these experiences. This provides targets for intervention development and clinical action to maintain or improve HRQL in PLWH with cognitive symptoms or impairment.
The psychometric properties of the social functioning in dementia scale over different dementia severities are unknown.
We interviewed 299 family carers of people with mild, moderate, or severe ...dementia from two UK research sites; examined acceptability (completion rates); conducted exploratory factor analysis; and tested each factor's internal consistency and construct validity.
Of 299, 285 (95.3%) carers completed questionnaires. Factor analysis indicated three distinct factors with acceptable internal consistency: spending time with other people, correlating with overall social function (r = 0.56, P < .001) and activities of daily living (r = −0.48, P < .001); communicating with other people correlating with activities of daily living (r = −0.66, P < .001); and sensitivity to other people correlating with quality of life (r = 0.35, P < .001) and inversely with neuropsychiatric symptoms (r = −0.45, P < .001). The three factors' correlations with other domains were similar across all dementia severities.
The social functioning in dementia scale carer version measures three social functioning domains and has satisfactory psychometric properties in all severities of dementia.
Abstract Introduction Family carers of people with dementia are their most important support in practical, personal, and economic terms. Carers are vital to maintaining the quality of life (QOL) of ...people with dementia. This review aims to identify factors related to the QOL of family carers of people with dementia. Methods Searches on terms including “carers,” “dementia,” “family,” and “quality of life” in research databases. Findings were synthesized inductively, grouping factors associated with carer QOL into themes. Results A total of 909 abstracts were identified. Following screening, lateral searches, and quality appraisal, 41 studies ( n = 5539) were included for synthesis. A total of 10 themes were identified: demographics; carer–patient relationship; dementia characteristics; demands of caring; carer health; carer emotional well-being; support received; carer independence; carer self-efficacy; and future. Discussion The quality and level of evidence supporting each theme varied. We need further research on what factors predict carer QOL in dementia and how to measure it.
PDF
