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1.
Eur J Immunol ; 54(5): e2350715, 2024 May.
Artigo em Inglês | MEDLINE | ID: mdl-38446066

RESUMO

Although a role for TLR2 on T cells has been indicated in prior studies, in vivo stimulation of TLR2 on T cells by Mtb and its impact on Mtb infection has not been tested. Furthermore, it is not known if the enhanced susceptibility to Mtb of Tlr2 gene knockout mice is due to its role in macrophages, T cells, or both. To address TLR2 on T cells, we generated Tlr2fl/flxCd4cre/cre mice, which lack expression of TLR2 on both CD4 and CD8 T cells, to study the in vivo role of TLR2 on T cells after aerosol infection with virulent Mtb. Deletion of TLR2 in CD4+ and CD8+ T cells reduces their ability to be co-stimulated by TLR2 ligands for cytokine production. These include both pro- (IFN-γ, TNF-α) and anti-inflammatory cytokines (IL-10). Deletion of TLR2 in T cells affected control of Mtb in the lungs and spleens of infected mice. This suggests that T-cell co-stimulation by mycobacterial TLR2 ligands in vivo contributes to the control of Mtb infection in the lung and spleen.


Assuntos
Linfócitos T CD4-Positivos , Linfócitos T CD8-Positivos , Camundongos Knockout , Mycobacterium tuberculosis , Receptor 2 Toll-Like , Tuberculose , Animais , Receptor 2 Toll-Like/imunologia , Receptor 2 Toll-Like/genética , Receptor 2 Toll-Like/metabolismo , Camundongos , Linfócitos T CD8-Positivos/imunologia , Linfócitos T CD4-Positivos/imunologia , Mycobacterium tuberculosis/imunologia , Tuberculose/imunologia , Tuberculose/microbiologia , Camundongos Endogâmicos C57BL , Pulmão/imunologia , Pulmão/microbiologia , Baço/imunologia , Interferon gama/imunologia , Interferon gama/metabolismo , Ativação Linfocitária/imunologia , Citocinas/metabolismo , Citocinas/imunologia
2.
J Immunol ; 211(9): 1385-1396, 2023 11 01.
Artigo em Inglês | MEDLINE | ID: mdl-37695687

RESUMO

Mycobacterium tuberculosis cell-wall glycolipids such as mannosylated lipoarabinomannan (ManLAM) can inhibit murine CD4+ T cells by blocking TCR signaling. This results in suppression of IL-2 production, reduced T cell proliferation, and induction of CD4+ T cell anergy. This study extended these findings to the interaction between primary human CD4+ T cells and macrophages infected by mycobacteria. Exposure of human CD4+ T cells to ManLAM before activation resulted in loss of polyfunctionality, as measured by IL-2, IFN-γ, and TNF-α expression, and reduced CD25 expression. This was not associated with upregulation of inhibitory receptors CTLA-4, PD-1, TIM-3, and Lag-3. By confocal microscopy and imaging flow cytometry, ManLAM exposure reduced conjugate formation between macrophages and CD4+ T cells. ManLAM colocalized to the immunological synapse (IS) and reduced translocation of lymphocyte-specific protein tyrosine kinase (LCK) to the IS. When CD4+ T cells and Mycobacterium bovis BCG-infected monocytes were cocultured, ManLAM colocalized to CD4+ T cells, which formed fewer conjugates with infected monocytes. These results demonstrate that mycobacterial cell-wall glycolipids such as ManLAM can traffic from infected macrophages to disrupt productive IS formation and inhibit CD4+ T cell activation, contributing to immune evasion by M. tuberculosis.


Assuntos
Mycobacterium tuberculosis , Humanos , Linfócitos T CD4-Positivos , Glicolipídeos/metabolismo , Sinapses Imunológicas , Interleucina-2/metabolismo , Macrófagos/microbiologia
3.
Health Expect ; 27(3): e14067, 2024 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-38715316

RESUMO

INTRODUCTION: Hearing loss is a chronic health condition that rises sharply with age. The way people respond to and cope with health conditions is influenced by their capacity to perform illness and treatment-related work. The aim was to explore the cumulative burdens of living with hearing loss and the resources mobilised to ease the burdens. METHODS: A qualitative design was used with semi-structured interviews (online or in-person) with participants recruited through audiology services and nonclinical services, such as lip-reading classes. Forty-six participants with hearing loss aged between 16 and 96 years were interviewed. An abductive approach, informed by May et al.'s burden of treatment theory, was used to analyse the data. RESULTS: The illness burden involved participants working to make sense of their hearing loss, engaging in emotional work in response to changes in sound, social interactions and identity and coping with the daily frustrations required to communicate with others. Abandonment and uncertainty characterised the treatment burden; participants engaged in emotional work to adjust to hearing technology and deal with the uncertainty of how their hearing might progress. To ameliorate the burdens, participants drew on internal resources (psychological, health literacy, cognitive) and external resources (social support, financial, information, technology). CONCLUSIONS: The workload of hearing loss appears largely devolved to the patient and is not always visible. Our work indicates the need to widen approaches in audiological care through the implementation of lifeworld-led care, family-centred care and peer support to build support for those with hearing loss. PATIENT OR PUBLIC CONTRIBUTION: We developed the project in consultation with members of the public who have lived experience of hearing loss recruited through Aston University and volunteer links to audiology services. We also consulted people more likely to be affected by hearing loss adults including adults with learning disabilities, older adults in residential care and people from South Asia (Bangladeshi, Indian and Pakistani communities). These individuals commented on the study aims, interview schedule and participant recruitment practices. One of our co-authors (expert by experience) contributed to the development and interpretation of themes and preparation of the final manuscript.


Assuntos
Adaptação Psicológica , Efeitos Psicossociais da Doença , Perda Auditiva , Entrevistas como Assunto , Pesquisa Qualitativa , Humanos , Feminino , Adulto , Pessoa de Meia-Idade , Masculino , Idoso , Perda Auditiva/psicologia , Perda Auditiva/terapia , Idoso de 80 Anos ou mais , Adolescente , Adulto Jovem
4.
Int J Audiol ; : 1-9, 2024 May 20.
Artigo em Inglês | MEDLINE | ID: mdl-38767328

RESUMO

OBJECTIVE: This study aimed to provide a conceptual model to understand what typifies the lived experience of hearing loss. DESIGN: A grounded theory informed study of adults with hearing loss (n = 46) who participated in individual interviews. The data were analysed in line with the constant comparative approach of grounded theory. A substantial patient and public engagement (PPIE) strategy underpinned decisions and processes throughout. STUDY SAMPLE: Adults were recruited from age bands (16-29; 30-49;50-79 and 80 upwards) to provide different lived experience. We recruited individuals from across the UK including urban, sub-urban and rural communities and included a typical constituency of each location including black and minority ethnic participants. Our PPIE groups included adults often marginalised in research including South Asian community groups, adults in residential care and those with additional disabilities. RESULTS: We identified the consistent features of the lived experience with hearing loss, as the individualised responsibility that hearing loss confers. These are an individual auditory lifeworld; social comparison and social support; individual and patient-centred care and individual agency and capability. CONCLUSIONS: This work provides new insights for those practising audiology and highlights the importance of building social support systems through implementation of family and peer support approaches.

5.
Nurs Crit Care ; 2024 Jan 17.
Artigo em Inglês | MEDLINE | ID: mdl-38233201

RESUMO

BACKGROUND: Paediatric critical care (PCC) is a high-pressure working environment. Staff experience high levels of burnout, symptoms of post-traumatic stress, and moral distress. AIM: To understand challenges to workplace well-being in PCC to help inform the development of staff interventions to improve and maintain well-being. STUDY DESIGN: The Enhanced Critical Incident Technique (ECIT) was used. ECIT encompasses semi-structured interviews and thematic analysis. We identified 'critical incidents', challenges to well-being, categorized them in a meaningful way, and identified factors which helped and hindered in those moments. Fifty-three nurses and doctors from a large UK quaternary PCC unit were consented to take part. RESULTS: Themes generated are: Context of working in PCC, which examined staff's experiences of working in PCC generally and during COVID-19; Patient care and moral distress explored significant challenges to well-being faced by staff caring for increasingly complex and chronically ill patients; Teamwork and leadership demonstrated the importance of team-belonging and clear leadership; Changing workforce explored the impact of staffing shortages and the ageing workforce on well-being; and Satisfying basic human needs, which identified absences in basic requirements of food and rest. CONCLUSIONS: Staff's experiential accounts demonstrated a clear need for psychologically informed environments to enable the sharing of vulnerabilities, foster support, and maintain workplace well-being. Themes resonated with the self-determination theory and Maslow's hierarchy of needs, which outline requirements for fulfilment (self-actualization). RELEVANCE TO CLINICAL PRACTICE: Well-being interventions must be informed by psychological theory and evidence. Recommendations are flexible rostering, advanced communication training, psychologically-informed support, supervision/mentoring training, adequate accommodation and hot food. Investment is required to develop successful interventions to improve workplace well-being.

6.
Cleft Palate Craniofac J ; 60(4): 461-473, 2023 04.
Artigo em Inglês | MEDLINE | ID: mdl-34967688

RESUMO

To date, limited research has been carried out into the psychological impact of having a diagnosis of Apert syndrome (AS) and the life experiences of families living with this condition. The aim of the current study was to explore psychological adjustment to AS from the perspectives of young people, and their parents, with the broader goal of informing care, and support for this population.Four young people (2 male) aged 11 to 15 years and their mothers were interviewed in their homes using a semistructured interview guide and photo-elicitation methods. Transcripts were analyzed using Interpretive Phenomenological Analysis.Three superordinate themes were identified from the data: (1) Acceptance and Adjustment: A Cyclical Journey; (2) A Barrier to Adjustment: Navigating Treatment; and (3) Facilitating Adjustment: Social Support. Families described adjustment as a cyclical process, which was sensitive to change, particularly in the context of ongoing medical treatment. Families also utilized many resources, particularly in the form of social support, to adjust to the challenges of AS and build resilience.The findings of this study have important implications for the implementation of patient-centered care within designated craniofacial treatment centers, which should at a minimum include the provision of reliable information throughout the treatment pathway, additional support from health professionals at key times of transition, and the coordination of support across medical teams, and other key organizations in the child's life.


Assuntos
Acrocefalossindactilia , Ajustamento Emocional , Criança , Feminino , Humanos , Masculino , Adolescente , Acrocefalossindactilia/terapia , Pais/psicologia , Apoio Social , Mães
7.
Illn Crises Loss ; 31(1): 151-167, 2023 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-36605777

RESUMO

COVID-19 lockdown and social distancing measures have restricted funerals and memorial events and have limited the face-to-face social networks that grieving people might normally be able to draw upon for emotional support. However, while there is considerable expert informed speculation about the impacts of grief and "COVID bereavement", detailed accounts of experiences of bereavement and bereavement support during the pandemic have the potential to enrich and provide nuance and subtlety to the evidence base. This paper draws on diary accounts of bereavement support volunteers in the UK, who have been providing support for the bereaved through these challenging times. These reveal layers of complexity to the experiences of loss, grief and bereavement during these extraordinary times. However, they also point to a number of additional themes that lend a more positive valence to the suspension of normal social expectations and memorial practices associated with the pandemic, which, we argue should be reflected upon for their potential to address the discontents of contemporary governance of end of life and bereavement.

8.
EMBO J ; 37(13)2018 07 02.
Artigo em Inglês | MEDLINE | ID: mdl-29728368

RESUMO

A central hypothesis for brain evolution is that it might occur via expansion of progenitor cells and subsequent lineage-dependent formation of neural circuits. Here, we report in vivo amplification and functional integration of lineage-specific circuitry in Drosophila Levels of the cell fate determinant Prospero were attenuated in specific brain lineages within a range that expanded not only progenitors but also neuronal progeny, without tumor formation. Resulting supernumerary neural stem cells underwent normal functional transitions, progressed through the temporal patterning cascade, and generated progeny with molecular signatures matching source lineages. Fully differentiated supernumerary gamma-amino butyric acid (GABA)-ergic interneurons formed functional connections in the central complex of the adult brain, as revealed by in vivo calcium imaging and open-field behavioral analysis. Our results show that quantitative control of a single transcription factor is sufficient to tune neuron numbers and clonal circuitry, and provide molecular insight into a likely mechanism of brain evolution.


Assuntos
Encéfalo/fisiologia , Proteínas de Drosophila/fisiologia , Drosophila/fisiologia , Neurônios GABAérgicos/fisiologia , Interneurônios/fisiologia , Proteínas do Tecido Nervoso/fisiologia , Células-Tronco Neurais/fisiologia , Proteínas Nucleares/fisiologia , Fatores de Transcrição/fisiologia , Animais , Evolução Biológica , Feminino , Masculino
9.
Eur Respir J ; 56(5)2020 11.
Artigo em Inglês | MEDLINE | ID: mdl-32675200

RESUMO

BACKGROUND: Over 30% of adult patients with pleural infection either die and/or require surgery. There is no robust means of predicting at baseline presentation which patients will suffer a poor clinical outcome. A validated risk prediction score would allow early identification of high-risk patients, potentially directing more aggressive treatment thereafter. OBJECTIVES: To prospectively assess a previously described risk score (the RAPID (Renal (urea), Age, fluid Purulence, Infection source, Dietary (albumin)) score) in adults with pleural infection. METHODS: Prospective observational cohort study that recruited patients undergoing treatment for pleural infection. RAPID score and risk category were calculated at baseline presentation. The primary outcome was mortality at 3 months; secondary outcomes were mortality at 12 months, length of hospital stay, need for thoracic surgery, failure of medical treatment and lung function at 3 months. RESULTS: Mortality data were available in 542 out of 546 patients recruited (99.3%). Overall mortality was 10% at 3 months (54 out of 542) and 19% at 12 months (102 out of 542). The RAPID risk category predicted mortality at 3 months. Low-risk mortality (RAPID score 0-2): five out of 222 (2.3%, 95% CI 0.9 to 5.7%); medium-risk mortality (RAPID score 3-4): 21 out of 228 (9.2%, 95% CI 6.0 to 13.7%); and high-risk mortality (RAPID score 5-7): 27 out of 92 (29.3%, 95% CI 21.0 to 39.2%). C-statistics for the scores at 3 months and 12 months were 0.78 (95% CI 0.71-0.83) and 0.77 (95% CI 0.72-0.82), respectively. CONCLUSIONS: The RAPID score stratifies adults with pleural infection according to increasing risk of mortality and should inform future research directed at improving outcomes in this patient population.


Assuntos
Doenças Pleurais , Adulto , Humanos , Tempo de Internação , Projetos Piloto , Estudos Prospectivos , Fatores de Risco
10.
BMC Health Serv Res ; 20(1): 157, 2020 Mar 02.
Artigo em Inglês | MEDLINE | ID: mdl-32122341

RESUMO

BACKGROUND: People living with dementia in care homes frequently exhibit "behaviour that challenges". Anti-psychotics are used to treat such behaviour, but are associated with significant morbidity. This study researched the feasibility of conducting a trial of a full clinical medication review for care home residents with behaviour that challenges, combined with staff training. This paper focusses on the feasibility of measuring clinical outcomes and intervention costs. METHODS: People living with moderate to severe dementia, receiving psychotropics for behaviour that challenges, in care homes were recruited for a medication review by a specialist pharmacist. Care home and primary care staff received training on the management of challenging behaviour. Data were collected at 8 weeks, and 3 and 6 months. Measures were Neuropsychiatric Inventory-Nursing Home version (NPI-NH), cognition (sMMSE), quality of life (EQ-5D-5 L/DEMQoL) and costs (Client Services Receipt Inventory). Response rates, for clinical, quality of life and health economic measures, including the levels of resource-use associated with the medication review and other non-intervention costs were calculated. RESULTS: Twenty-nine of 34 participants recruited received a medication review. It was feasible to measure the effects of the complex intervention on the management of behaviour that challenges with the NPI-NH. There was valid NPI-NH data at each time point (response rate = 100%). The sMMSE response rate was 18.2%. Levels of resource-use associated with the medication review were estimated for all 29 participants who received a medication review. Good response levels were achieved for other non-intervention costs (100% completion rate), and the EQ-5D-5 L and DEMQoL (≥88% at each of the time points where data was collected). CONCLUSIONS: It is feasible to measure the clinical and cost effectiveness of a complex intervention for behaviour that challenges using the NPI-NH and quality of life measures. TRIAL REGISTRATION: ISRCTN58330068. Retrospectively registered, 15 October 2017.


Assuntos
Medicina do Comportamento/economia , Demência/tratamento farmacológico , Demência/psicologia , Assistência Farmacêutica/economia , Psicotrópicos/uso terapêutico , Idoso , Idoso de 80 Anos ou mais , Análise Custo-Benefício , Revisão de Uso de Medicamentos , Estudos de Viabilidade , Feminino , Humanos , Masculino , Casas de Saúde , Resultado do Tratamento , Reino Unido
11.
BMC Cancer ; 19(1): 121, 2019 Feb 04.
Artigo em Inglês | MEDLINE | ID: mdl-30717707

RESUMO

BACKGROUND: Induction chemotherapy followed by chemoradiation is a treatment option for patients with locally advanced pancreatic cancer (LAPC). However, overall survival is comparable to chemotherapy alone and local progression occurs in nearly half of all patients, suggesting chemoradiation strategies should be optimised. SCALOP-2 is a randomised phase II trial testing the role of radiotherapy dose escalation and/or the addition of the radiosensitiser nelfinavir, following induction chemotherapy of gemcitabine and nab-paclitaxel (GEMABX). A safety run-in phase (stage 1) established the nelfinavir dose to administer with chemoradiation in the randomised phase (stage 2). METHODS: Patients with locally advanced, inoperable, non-metastatic pancreatic adenocarcinoma receive three cycles of induction GEMABX chemotherapy prior to radiological assessment. Those with stable/responding disease are eligible for further trial treatment. In Stage 1, participants received one further cycle of GEMABX followed by capecitabine-chemoradiation with escalating doses of nelfinavir in a rolling-six design. Stage 2 aims to register 262 and randomise 170 patients with responding/stable disease to one of five arms: capecitabine with high- (arms C + D) or standard-dose (arms A + B) radiotherapy with (arms A + C) or without (arms B + D) nelfinavir, or three more cycles of GEMABX (arm E). Participants allocated to the chemoradiation arms receive another cycle of GEMABX before chemoradiation begins. Co-primary outcomes are 12-month overall survival (radiotherapy dose-escalation question) and progression-free survival (nelfinavir question). Secondary outcomes include toxicity, quality of life, disease response rate, resection rate, treatment compliance, and CA19-9 response. SCALOP-2 incorporates a detailed radiotherapy quality assurance programme. DISCUSSION: SCALOP-2 aims to optimise chemoradiation in LAPC and incorporates a modern induction regimen. TRIAL REGISTRATION: Eudract No: 2013-004968-56; ClinicalTrials.gov : NCT02024009.


Assuntos
Adenocarcinoma/terapia , Protocolos de Quimioterapia Combinada Antineoplásica/administração & dosagem , Quimiorradioterapia , Quimioterapia de Indução , Segunda Neoplasia Primária/terapia , Neoplasias Pancreáticas/terapia , Adenocarcinoma/patologia , Adenocarcinoma/fisiopatologia , Adolescente , Adulto , Idoso , Idoso de 80 Anos ou mais , Antineoplásicos/administração & dosagem , Capecitabina/administração & dosagem , Terapia Combinada , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Nelfinavir/administração & dosagem , Segunda Neoplasia Primária/patologia , Segunda Neoplasia Primária/fisiopatologia , Neoplasias Pancreáticas/patologia , Neoplasias Pancreáticas/fisiopatologia , Doses de Radiação , Análise de Sobrevida , Resultado do Tratamento , Adulto Jovem
12.
Qual Life Res ; 28(11): 3083-3092, 2019 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-31227959

RESUMO

OBJECTIVES: Niemann-Pick disease type C (NPC) is a rare life-limiting disease for which there is no cure. No scales currently exist to measure the impact of medication, physical therapy or clinical trials. The aim of this study was to develop age-appropriate Quality-of-Life (QoL) scales to measure the impact of NPC on children and adults. DESIGN: Scale development study using a phenomenological approach to data generation and analysis. METHODS: Fourteen interviews were conducted with people living with NPC and/or their parents/carers. Themes were generated and examined against an existential-phenomenological theory of wellbeing. A matrix was constructed to represent the phenomenological insight gained on participants' subjective experiences and a bank of items that were related to their QoL was developed. RESULTS: NPC quality-of-life questionnaires for children (NPCQLQ-C) and adults (NPCQLQ-A) proxy prototype scales were produced and completed by 23 parents/carers of children (child age mean = 8.61 years) and 20 parents/carers of adults (adult age = 33.4 years). Reliability analysis resulted in a 15-item NPCQLQ-C and a 30-item NPCQLQ-A, which showed excellent internal consistency, Cronbach's α = 0.925 and 0.947, respectively. CONCLUSION: The NPCQLQ-C and NPCQLQ-A are the first disease-specific QoL scales to be developed for people living with NPC. This novel approach to scale development values the experiential, real life impact of living with NPC and focused on the lived-experiences and impact on QoL. The scales will enable healthcare professionals and researchers to have a better understanding and quantifiable measurement of the impact of living with NPC on a patient's daily life.


Assuntos
Doença de Niemann-Pick Tipo C/psicologia , Qualidade de Vida/psicologia , Inquéritos e Questionários , Adolescente , Adulto , Cuidadores/psicologia , Criança , Feminino , Humanos , Masculino , Pais/psicologia , Doenças Raras , Reprodutibilidade dos Testes
13.
Am J Respir Crit Care Med ; 197(4): 502-508, 2018 02 15.
Artigo em Inglês | MEDLINE | ID: mdl-28926296

RESUMO

RATIONALE: Patients with malignant pleural effusion experience breathlessness, which is treated by drainage and pleurodesis. Incomplete drainage results in residual dyspnea and pleurodesis failure. Intrapleural fibrinolytics lyse septations within pleural fluid, improving drainage. OBJECTIVES: To assess the effects of intrapleural urokinase on dyspnea and pleurodesis success in patients with nondraining malignant effusion. METHODS: We conducted a prospective, double-blind, randomized trial. Patients with nondraining effusion were randomly allocated in a 1:1 ratio to intrapleural urokinase (100,000 IU, three doses, 12-hourly) or matched placebo. MEASUREMENTS AND MAIN RESULTS: Co-primary outcome measures were dyspnea (average daily 100-mm visual analog scale scores over 28 d) and time to pleurodesis failure to 12 months. Secondary outcomes were survival, hospital length of stay, and radiographic change. A total of 71 subjects were randomized (36 received urokinase, 35 placebo) from 12 U.K. centers. The baseline characteristics were similar between the groups. There was no difference in mean dyspnea between groups (mean difference, 3.8 mm; 95% confidence interval [CI], -12 to 4.4 mm; P = 0.36). Pleurodesis failure rates were similar (urokinase, 13 of 35 [37%]; placebo, 11 of 34 [32%]; adjusted hazard ratio, 1.2; P = 0.65). Urokinase was associated with decreased effusion size visualized by chest radiography (adjusted relative improvement, -19%; 95% CI, -28 to -11%; P < 0.001), reduced hospital stay (1.6 d; 95% CI, 1.0 to 2.6; P = 0.049), and improved survival (69 vs. 48 d; P = 0.026). CONCLUSIONS: Use of intrapleural urokinase does not reduce dyspnea or improve pleurodesis success compared with placebo and cannot be recommended as an adjunct to pleurodesis. Other palliative treatments should be used. Improvements in hospital stay, radiographic appearance, and survival associated with urokinase require further evaluation. Clinical trial registered with ISRCTN (12852177) and EudraCT (2008-000586-26).


Assuntos
Derrame Pleural Maligno/terapia , Ativador de Plasminogênio Tipo Uroquinase/uso terapêutico , Idoso , Método Duplo-Cego , Feminino , Humanos , Tempo de Internação/estatística & dados numéricos , Masculino , Cuidados Paliativos/métodos , Derrame Pleural Maligno/enzimologia , Pleurodese/métodos , Estudos Prospectivos
14.
BMC Med Inform Decis Mak ; 19(1): 110, 2019 06 11.
Artigo em Inglês | MEDLINE | ID: mdl-31186018

RESUMO

BACKGROUND: Health and social care interventions show promise as a way of managing the progression of frailty in older adults. Information technology could improve the availability of interventions and services for older adults. The views of stakeholders on the acceptability of technological solutions for frailty screening and management have not been explored. METHODS: Focus groups were used to gather data from healthy and frail/pre-frail older adults, health and social care providers, and caregivers in three European countries - Italy, Poland and UK. Data were analysed using framework analysis in terms of facilitators or determinants of older adults' adoption of technology. RESULTS: Our findings clustered around the perceived value; usability, affordability and accessibility; and emotional benefits of frailty screening and management technology to stakeholders. We also noted issues relating to social support, previous experience of technology and confidence of stakeholders. CONCLUSIONS: Professionals and caregivers understand the benefits of technology to facilitate frailty care pathways but these views are tempered by concerns around social isolation. Frail older adults raised legitimate concerns about the accessibility and usability of technology, specifically around the potential for their personal information to be compromised. Solutions must be developed within a framework that addresses social contexts and avoids stigma around frailty and ageing.


Assuntos
Atitude do Pessoal de Saúde , Cuidadores , Gerenciamento Clínico , Fragilidade/diagnóstico , Fragilidade/terapia , Pessoal de Saúde , Aceitação pelo Paciente de Cuidados de Saúde , Telecomunicações , Adulto , Idoso , Idoso de 80 Anos ou mais , Feminino , Grupos Focais , Humanos , Itália , Masculino , Polônia , Reino Unido
15.
Med Humanit ; 45(4): 428-433, 2019 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-31235652

RESUMO

Lifeworld-led care provides a route through which research and practice can navigate the 'biopsychosocial' allowing us to overcome the shortfalls of the medical model and enabling us to prioritise humanity in the care of people living with tinnitus. In this article, we sought to explore qualitative descriptions of life with tinnitus. We aimed to address the question 'what it is like to live with tinnitus?' In doing so we examined qualitative studies and provide suggestions about key themes that seem consistent. This is a narrative, thematic overview of the way lifeworld has been conceptualised and explored in tinnitus research.


Assuntos
Modelos Teóricos , Zumbido/psicologia , Adaptação Psicológica , Feminino , Humanos , Masculino , Pesquisa Qualitativa
16.
BMC Psychiatry ; 18(1): 340, 2018 10 19.
Artigo em Inglês | MEDLINE | ID: mdl-30340480

RESUMO

BACKGROUND: "Behaviour that Challenges" is common in people living with dementia, resident in care homes and historically has been treated with anti-psychotics. However, such usage is associated with 1800 potentially avoidable deaths annually in the UK. This study investigated the feasibility of a full clinical trial of a specialist dementia care pharmacist medication review combined with a health psychology intervention for care staff to limit the use of psychotropics. This paper focuses on feasibility; including recruitment and retention, implementation of medication change recommendations and the experiences and expectations of care staff. METHODS: West Midlands care homes and individuals meeting the inclusion criteria (dementia diagnosis; medication for behaviour that challenges), or their personal consultee, were approached for consent. A specialist pharmacist reviewed medication. Care home staff received an educational behaviour change intervention in a three-hour session promoting person-centred care. Primary healthcare staff received a modified version of the training. The primary outcome measure was the Neuropsychiatric Inventory-Nursing Home version at 3 months. Other outcomes included quality of life, cognition, health economics and prescribed medication. A qualitative evaluation explored expectations and experiences of care staff. RESULTS: Five care homes and 34 of 108 eligible residents (31.5%) were recruited, against an original target of 45 residents across 6 care homes. Medication reviews were conducted for 29 study participants (85.3%) and the pharmacist recommended stopping or reviewing medication in 21 cases (72.4%). Of the recommendations made, 57.1% (12 of 21) were implemented, and implementation (discontinuation) took a mean of 98.4 days. In total, 164 care staff received training and 21 were interviewed. Care staff reported a positive experience of the intervention and post intervention adopting a more holistic patient-centred approach. CONCLUSIONS: The intervention contained two elements; staff training and medication review. It was feasible to implement the staff training, and the training appeared to increase the ability and confidence of care staff to manage behaviour that challenges without the need for medication. The medication review would require significant modification for full trial partly related to the relatively limited uptake of the recommendations made, and delay in implementation. TRIAL REGISTRATION: ISRCTN58330068 . Registered 15 October 2017. Retrospectively registered.


Assuntos
Demência/psicologia , Demência/terapia , Reconciliação de Medicamentos/métodos , Assistência Centrada no Paciente/métodos , Assistência Farmacêutica , Idoso , Medicina do Comportamento/métodos , Medicina do Comportamento/normas , Cuidadores/psicologia , Cuidadores/normas , Gerenciamento Clínico , Estudos de Viabilidade , Instituição de Longa Permanência para Idosos/normas , Humanos , Reconciliação de Medicamentos/normas , Casas de Saúde/normas , Assistência Centrada no Paciente/normas , Assistência Farmacêutica/normas , Qualidade da Assistência à Saúde/normas , Qualidade de Vida/psicologia , Estudos Retrospectivos , Autocuidado
17.
BMC Geriatr ; 18(1): 273, 2018 11 12.
Artigo em Inglês | MEDLINE | ID: mdl-30419817

RESUMO

BACKGROUND: The objective of this study was to explore the issues surrounding access to health and social care services for frail older adults with Polish stakeholders, including healthy and frail/pre-frail older adults, health care providers, social care providers, and caregivers, in order to determine their views and perspectives on the current system and to present suggestions for the future development of a more accessible and person-centred health and social care system. METHODS: Focus groups were used to gather qualitative data from stakeholders. Data were analysed using framework analysis according to five dimensions of accessibility to care: approachability, acceptability, availability and accommodation, affordability and appropriateness. RESULTS: Generally services were approachable and acceptable, but unavailable. Poor availability related to high staff turnover, staff shortages and a lack of trained personnel. There were problems of long waiting times for specialist care and rehabilitation services, and geographically remote clinics. Critically, there were shortages of long-term inpatient care places, social care workers and caregivers. The cost of treatments created barriers to care and inequities in the system. Participants described a lack of integration between health and social care systems with differing priorities and disconnected budgets. They described an acute medical system that was inappropriate for patients with complex needs, alongside a low functioning social care system, where bureaucratisation caused delays in providing services to the vulnerable. An integrated system with a care coordinator to improve connections between services and patients was suggested. CONCLUSIONS: There is an immediate need to improve access to health and social care systems for pre-frail and frail patients, as well as their caregivers. Health and social care services need to be integrated to reduce bureaucracy and increase the timeliness of treatment and care.


Assuntos
Idoso Fragilizado , Acessibilidade aos Serviços de Saúde/estatística & dados numéricos , Serviços de Saúde para Idosos/estatística & dados numéricos , Assistência Centrada no Paciente/estatística & dados numéricos , Idoso , Cuidadores , Estudos de Avaliação como Assunto , Feminino , Grupos Focais , Pessoal de Saúde , Acessibilidade aos Serviços de Saúde/organização & administração , Serviços de Saúde para Idosos/organização & administração , Humanos , Masculino , Assistência Centrada no Paciente/organização & administração
18.
Int J Audiol ; 57(10): 784-790, 2018 10.
Artigo em Inglês | MEDLINE | ID: mdl-30388941

RESUMO

In order to identify patient preferences in care for tinnitus an in depth grounded theory study was conducted. This consisted of interviews with 41 patients who had sought help for tinnitus across a range of locations and tinnitus services in England. Preferences for outcomes were for both the removal of the tinnitus and for improved coping and management of the tinnitus. Preferences for treatment were for individualized care, tailored information and for treatment to assist with psychological adjustment and auditory distraction. Adoption of treatments to manage tinnitus were based on a trial and error approach. Patients? preferences for individual treatments varied but were informed by the information they received. Information plays an important role in care for people with tinnitus. Patients hold individual preferences and require engagement in shared decision making.


Assuntos
Conhecimentos, Atitudes e Prática em Saúde , Preferência do Paciente , Zumbido/terapia , Adaptação Psicológica , Efeitos Psicossociais da Doença , Inglaterra , Comunicação em Saúde , Humanos , Entrevistas como Assunto , Educação de Pacientes como Assunto/métodos , Participação do Paciente , Relações Profissional-Paciente , Pesquisa Qualitativa , Zumbido/diagnóstico , Zumbido/fisiopatologia , Zumbido/psicologia
19.
Int J Audiol ; 57(9): 714-719, 2018 09.
Artigo em Inglês | MEDLINE | ID: mdl-29741407

RESUMO

OBJECTIVE: To develop a decision aid for tinnitus care that would meet international consensus for decision aid quality. DESIGN: A mixed methods design that included qualitative in-depth interviews, literature review, focus groups, user testing and readability checking. STUDY SAMPLE: Patients and clinicians who have clinical experience of tinnitus. RESULTS: A decision aid for tinnitus care was developed. This incorporates key evidence of efficacy for the most frequently used tinnitus care options, together with information derived from patient priorities when deciding which choice to make. CONCLUSION: The decision aid has potential to enable shared decision making between clinicians and patients in audiology. The decision aid meets consensus standards.


Assuntos
Técnicas de Apoio para a Decisão , Participação do Paciente , Zumbido/terapia , Atitude do Pessoal de Saúde , Percepção Auditiva , Tomada de Decisão Clínica , Consenso , Feminino , Grupos Focais , Comunicação em Saúde , Conhecimentos, Atitudes e Prática em Saúde , Audição , Humanos , Entrevistas como Assunto , Masculino , Pessoa de Meia-Idade , Educação de Pacientes como Assunto , Valor Preditivo dos Testes , Relações Profissional-Paciente , Pesquisa Qualitativa , Zumbido/diagnóstico , Zumbido/fisiopatologia , Zumbido/psicologia
20.
BMC Geriatr ; 17(1): 242, 2017 10 18.
Artigo em Inglês | MEDLINE | ID: mdl-29047339

RESUMO

BACKGROUND: Little is known about the general medicines management issues for people with dementia living in the community. This review has three aims: firstly to explore and evaluate the international literature on how people with dementia manage medication; assess understanding of medicines management from an informal carers perspective; and lastly to understand the role that healthcare professionals play in assisting this population with medicines management. METHODS: A mixed studies review was conducted. Web of Knowledge, PubMed and Cochrane Library were searched post-1999 for studies that explored medicines management in people with dementia dwelling in the community, and the role healthcare professionals play in supporting medicines management in people with dementia. Following screening, nine articles were included. Data from included studies were synthesised using a convergent synthesis approach and analysed thematically to combine findings from studies using a range of methods (qualitative, quantitative and mixed methods). RESULTS: Four themes were generated from the synthesis: The nature of the disease and the effects this had on medicines management; the additional responsibilities informal carers have; informal caregivers' knowledge of the importance of managing medication and healthcare professionals' understanding of medicines management in people with dementia. Consequently, these were found to affect management of medication, in particular adherence to medication. CONCLUSIONS: This review has identified that managing medication for people with dementia dwelling in the community is a complex task with a frequently associated burden on their informal caregivers. Healthcare professionals can be unaware of this burden. The findings warrant the need for healthcare professionals to undergo further training in supporting medicines management for people with dementia in their own homes.


Assuntos
Cuidadores/estatística & dados numéricos , Demência/epidemiologia , Conhecimento do Paciente sobre a Medicação , Pessoal de Saúde/estatística & dados numéricos , Humanos , Conhecimento do Paciente sobre a Medicação/estatística & dados numéricos , Papel Profissional , Características de Residência
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