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1.
Nat Med ; 30(5): 1384-1394, 2024 May.
Artigo em Inglês | MEDLINE | ID: mdl-38740997

RESUMO

How human genetic variation contributes to vaccine effectiveness in infants is unclear, and data are limited on these relationships in populations with African ancestries. We undertook genetic analyses of vaccine antibody responses in infants from Uganda (n = 1391), Burkina Faso (n = 353) and South Africa (n = 755), identifying associations between human leukocyte antigen (HLA) and antibody response for five of eight tested antigens spanning pertussis, diphtheria and hepatitis B vaccines. In addition, through HLA typing 1,702 individuals from 11 populations of African ancestry derived predominantly from the 1000 Genomes Project, we constructed an imputation resource, fine-mapping class II HLA-DR and DQ associations explaining up to 10% of antibody response variance in our infant cohorts. We observed differences in the genetic architecture of pertussis antibody response between the cohorts with African ancestries and an independent cohort with European ancestry, but found no in silico evidence of differences in HLA peptide binding affinity or breadth. Using immune cell expression quantitative trait loci datasets derived from African-ancestry samples from the 1000 Genomes Project, we found evidence of differential HLA-DRB1 expression correlating with inferred protection from pertussis following vaccination. This work suggests that HLA-DRB1 expression may play a role in vaccine response and should be considered alongside peptide selection to improve vaccine design.


Assuntos
Cadeias HLA-DRB1 , Humanos , Cadeias HLA-DRB1/genética , Cadeias HLA-DRB1/imunologia , Lactente , População Negra/genética , Vacinas contra Hepatite B/imunologia , Locos de Características Quantitativas , Masculino , Feminino , Uganda , Formação de Anticorpos/genética , Formação de Anticorpos/imunologia , Vacina contra Coqueluche/imunologia , Vacina contra Coqueluche/genética , Vacinação , Coqueluche/prevenção & controle , Coqueluche/imunologia , Coqueluche/genética
2.
Artigo em Inglês | MEDLINE | ID: mdl-38549844

RESUMO

The interplay between genetic and environmental factors plays a significant role in interindividual variation in immune and inflammatory responses. The availability of high-throughput low-cost genotyping and next-generation sequencing has revolutionized our ability to identify human genetic variation and understand how this varies within and between populations, and the relationship with disease. In this review, we explore the potential of genomics for patient benefit, specifically in the diagnosis, prognosis and treatment of inflammatory and immune-related diseases. We summarize the knowledge arising from genetic and functional genomic approaches, and the opportunity for personalized medicine. The review covers applications in infectious diseases, rare immunodeficiencies and autoimmune diseases, illustrating advances in diagnosis and understanding risk including use of polygenic risk scores. We further explore the application for patient stratification and drug target prioritization. The review highlights a key challenge to the field arising from the lack of sufficient representation of genetically diverse populations in genomic studies. This currently limits the clinical utility of genetic-based diagnostic and risk-based applications in non-Caucasian populations. We highlight current genome projects, initiatives and biobanks from diverse populations and how this is being used to improve healthcare globally by improving our understanding of genetic susceptibility to diseases and regional pathogens such as malaria and tuberculosis. Future directions and opportunities for personalized medicine and wider application of genomics in health care are described, for the benefit of individual patients and populations worldwide.

3.
FASEB J ; 38(6): e23505, 2024 Mar 31.
Artigo em Inglês | MEDLINE | ID: mdl-38507255

RESUMO

Aortic stenosis (AS) and hypertrophic cardiomyopathy (HCM) are distinct disorders leading to left ventricular hypertrophy (LVH), but whether cardiac metabolism substantially differs between these in humans remains to be elucidated. We undertook an invasive (aortic root, coronary sinus) metabolic profiling in patients with severe AS and HCM in comparison with non-LVH controls to investigate cardiac fuel selection and metabolic remodeling. These patients were assessed under different physiological states (at rest, during stress induced by pacing). The identified changes in the metabolome were further validated by metabolomic and orthogonal transcriptomic analysis, in separately recruited patient cohorts. We identified a highly discriminant metabolomic signature in severe AS in all samples, regardless of sampling site, characterized by striking accumulation of long-chain acylcarnitines, intermediates of fatty acid transport across the inner mitochondrial membrane, and validated this in a separate cohort. Mechanistically, we identify a downregulation in the PPAR-α transcriptional network, including expression of genes regulating fatty acid oxidation (FAO). In silico modeling of ß-oxidation demonstrated that flux could be inhibited by both the accumulation of fatty acids as a substrate for mitochondria and the accumulation of medium-chain carnitines which induce competitive inhibition of the acyl-CoA dehydrogenases. We present a comprehensive analysis of changes in the metabolic pathways (transcriptome to metabolome) in severe AS, and its comparison to HCM. Our results demonstrate a progressive impairment of ß-oxidation from HCM to AS, particularly for FAO of long-chain fatty acids, and that the PPAR-α signaling network may be a specific metabolic therapeutic target in AS.


Assuntos
Estenose da Valva Aórtica , Cardiomiopatia Hipertrófica , Humanos , Receptores Ativados por Proliferador de Peroxissomo , Cardiomiopatia Hipertrófica/genética , Hipertrofia Ventricular Esquerda/genética , Estenose da Valva Aórtica/genética , Ácidos Graxos/metabolismo
4.
Gerontologist ; 63(6): 1028-1038, 2023 07 18.
Artigo em Inglês | MEDLINE | ID: mdl-36652299

RESUMO

BACKGROUND AND OBJECTIVES: A multifaceted construct called occupational communion (OC), defined as a sense of belonging based on social interaction at work, has been proposed to understand why care workers were positively engaged in their jobs over time, even though they were very demanding. Rich qualitative data on the multiple aspects of OC in care work exist, but a valid measure does not. RESEARCH DESIGN AND METHODS: We applied a mixed-method systematic scale development process to measure OC. Aged and dementia care workers in Australia (76%) and other countries participated in a focus group and online surveys (N = 2,451). We also used interview data from our prior study. The study involved 3 components: (1) scale development and design; (2) pilot test validation with exploratory factor analysis; and (3) confirmatory validation via confirmatory factor analysis. The third component assessed convergent and discriminant validity using measures of communion, self-efficacy, work engagement, job and life satisfaction, intention to leave, positive and negative affect, and mood. RESULTS: We developed a 28-item Occupational Communion Scale (OCS) with good internal consistency (composite reliability = 0.75-0.91) across 6 factors: (1) "natural" carer, (2) psychological need to care, (3) connection with clients, (4) connection with coworkers, (5) desire for more connection, and (6) blurred boundaries. All validity measures correlated with OC and work engagement, self-efficacy, and positive affect showed the strongest association. DISCUSSION AND IMPLICATIONS: The OCS can be used to design and evaluate interventions addressing aged care workforce engagement, social connections and well-being, and care outcomes.


Assuntos
Autoeficácia , Engajamento no Trabalho , Humanos , Idoso , Reprodutibilidade dos Testes , Cuidadores/psicologia , Inquéritos e Questionários , Recursos Humanos , Psicometria
5.
Australas J Ageing ; 42(1): 204-212, 2023 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-36086881

RESUMO

OBJECTIVE: Australian aged care workforce surveys offer limited information about those who engage in online dementia education regarding their occupational health and well-being. A salutogenic approach was applied to an aged care context to quantitatively assess both positive and negative aspects of health at work to inform the development of workplace interventions tailored to those interested in self-development. METHODS: Physical, psychological and occupational health were measured in an online cross-sectional survey of general health, chronic conditions, psychological distress, positive and negative affect, job satisfaction, access to workplace amenities and turnover intentions of aged care workers undertaking an online dementia course in October 2014. RESULTS: Participants (N = 662) rated their general physical health as good and a minority experienced chronic conditions such as obesity. Overall, workers had average levels of positive and negative affect and low distress. However, 25% were likely to have a mental health condition. While most were employed on a permanent basis (80%) and reported moderate job satisfaction, 18% were likely to leave their job. There were some gaps in workplace amenities to support health and well-being: for example, 13% reported no access to lunch break areas. CONCLUSIONS: Results suggest precarious resilience in aged care workers enrolled in an Australian online dementia course. Workplace interventions that focus on preventative health strategies are required to address the health risks associated with higher than national averages of obesity and mental health, and reduce exposure of workers to physical and psychological harms.


Assuntos
Demência , Saúde Ocupacional , Humanos , Idoso , Estudos Transversais , Austrália , Pessoal de Saúde/psicologia , Local de Trabalho/psicologia , Satisfação no Emprego , Inquéritos e Questionários , Demência/diagnóstico , Estresse Psicológico/diagnóstico
6.
BJPsych Open ; 8(3): e91, 2022 May 10.
Artigo em Inglês | MEDLINE | ID: mdl-35535515

RESUMO

BACKGROUND: Owing to multiple, complex and intersecting health inequities, systemic oppression and violence and discrimination in their home countries, some transgender people are forced to migrate to countries that offer them better legal protection and wider social acceptance. AIMS: This review sought to explore and understand the multiple factors that shape the mental health outcomes of transgender forced migrants (TFMs). METHOD: We systematically searched nine electronic databases for multidisciplinary literature (PROSPERO ID: CRD42020183062). We used a meta-ethnographic approach to synthesise data. We completed a quality appraisal and developed a socio-ecological model to draw together our findings. RESULTS: We retrieved 3399 records and screened titles, abstracts and full text to include 24 qualitative studies in this review. The synthesis identified individual survival strategies and factors in interpersonal, organisational and societal environments that contributed to profound deprivation and mental distress in TFMs. Pervasive and persistent violence and discrimination, economic exclusion, barriers to healthcare and a dependency on legal documentation were identified as key factors leading to poor mental health outcomes. Sources of resilience included community acceptance and support, being granted asylum, societal affirmation of gender, fulfilment of basic rights and healthcare access. Individual strategies for survival, such as hope and having purpose in life, were important in bringing relief from distress. CONCLUSIONS: Improved communication and knowledge about the unique needs and concerns of TFMs through interventions at the individual, interpersonal, organisational and societal levels are necessary to improve mental health outcomes.

7.
BMC Health Serv Res ; 22(1): 14, 2022 Jan 02.
Artigo em Inglês | MEDLINE | ID: mdl-34974838

RESUMO

BACKGROUND: People with young onset dementia (YOD) have unique needs and experiences, requiring care and support that is timely, appropriate and accessible. This relies on health professionals possessing sufficient knowledge about YOD. This study aims to establish a consensus among YOD experts about the information that is essential for health professionals to know about YOD. METHODS: An international Delphi study was conducted using an online survey platform with a panel of experts (n = 19) on YOD. In round 1 the panel individually responded to open-ended questions about key facts that are essential for health professionals to understand about YOD. In rounds 2 and 3, the panel individually rated the collated responses in terms of their importance in addition to selected items from the Dementia Knowledge Assessment Scale. The consensus level reached for each statement was calculated using the median, interquartile range and percentage of panel members who rated the statement at the highest level of importance. RESULTS: The panel of experts were mostly current or retired clinicians (57%, n = 16). Their roles included neurologist, psychiatrist and neuropsychiatrist, psychologist, neuropsychologist and geropsychologist, physician, social worker and nurse practitioner. The remaining respondents had backgrounds in academia, advocacy, or other areas such as law, administration, homecare or were unemployed. The panel reached a high to very high consensus on 42 (72%) statements that they considered to be important for health professionals to know when providing care and services to people with YOD and their support persons. Importantly the panel agreed that health professionals should be aware that people with YOD require age-appropriate care programs and accommodation options that take a whole-family approach. In terms of identifying YOD, the panel agreed that it was important for health professionals to know that YOD is aetiologically diverse, distinct from a mental illness, and has a combination of genetic and non-genetic contributing factors. The panel highlighted the importance of health professionals understanding the need for specialised, multidisciplinary services both in terms of diagnosing YOD and in providing ongoing support. The panel also agreed that health professionals be aware of the importance of psychosocial support and non-pharmacological interventions to manage neuropsychiatric symptoms. CONCLUSIONS: The expert panel identified information that they deem essential for health professionals to know about YOD. There was agreement across all thematic categories, indicating the importance of broad professional knowledge related to YOD identification, diagnosis, treatment, and ongoing care. The findings of this study are not only applicable to the delivery of support and care services for people with YOD and their support persons, but also to inform the design of educational resources for health professionals who are not experts in YOD.


Assuntos
Demência , Consenso , Técnica Delphi , Demência/diagnóstico , Demência/terapia , Pessoal de Saúde , Humanos , Inquéritos e Questionários
8.
J Hum Hypertens ; 36(7): 591-603, 2022 07.
Artigo em Inglês | MEDLINE | ID: mdl-34702957

RESUMO

Hypertension is the leading single preventable risk factor for death worldwide, and most of the disease burden attributed to hypertension weighs on low-and middle-income countries. Effective large-scale public health hypertension control programs are needed to control hypertension globally. National programs can follow six important steps to launch a successful national-scale hypertension control program: establish an administrative structure and survey current resources, select a standard hypertension treatment protocol, ensure supply of medication and blood pressure devices, train health care workers to measure blood pressure and control hypertension, implement an information system for monitoring patients and the program overall, and enroll and monitor patients with phased program expansion. Resolve to Save Lives, an initiative of global public health organization Vital Strategies, and its partners organized these six key steps and materials into a structured, stepwise guide to establish best practices in hypertension program design, launch, maintenance, and scale-up.


Assuntos
Hipertensão , Pressão Sanguínea , Efeitos Psicossociais da Doença , Humanos , Hipertensão/diagnóstico , Hipertensão/tratamento farmacológico , Hipertensão/epidemiologia , Renda , Saúde Pública
9.
BMC Geriatr ; 17(1): 168, 2017 07 31.
Artigo em Inglês | MEDLINE | ID: mdl-28760154

RESUMO

BACKGROUND: Dementia is a life-limiting condition that is increasing in global prevalence in line with population ageing. In this context, it is necessary to accurately measure dementia knowledge across a spectrum of health professional and lay populations with the aim of informing targeted educational interventions and improving literacy, care, and support. Building on prior exploratory analysis, which informed the development of the preliminarily valid and reliable version of the Dementia Knowledge Assessment Scale (DKAS), a Confirmatory Factor Analysis (CFA) was performed to affirm construct validity and proposed subscales to further increase the measure's utility for academics and educators. METHODS: A large, de novo sample of 3649 volunteer respondents to a dementia-related online course was recruited to evaluate the performance of the DKAS and its proposed subscales. Respondents represented diverse cohorts, including health professionals, students, and members of the general public. Analyses included CFA (using structural equation modelling), measures of internal consistency (α), and non-parametric tests of subscale correlation (Spearman Correlation) and score differences between cohorts (Kruskal-Wallis one-way analysis of variance). RESULTS: Findings of the CFA supported a 25-item, four-factor model for the DKAS with two items removed due to poor performance and one item moved between factors. The resultant model exhibited good reliability (α = .85; ω h  = .87; overall scale), with acceptable subscale internal consistency (α ≥ .65; subscales). Subscales showed acceptable correlation without any indication of redundancy. Finally, total and DKAS subscale scores showed good discrimination between cohorts of respondents who would be anticipated to hold different levels of knowledge on the basis of education or experience related to dementia. CONCLUSION: The DKAS has been confirmed as a reliable and valid measure of dementia knowledge for diverse populations that is capable of elucidating knowledge characteristics across four coherent domains: 1) Causes and Characteristics, 2) Communication and Behaviour, 3) Care Considerations, and 4) Risks and Health Promotion. Importantly, the four confirmed subscales clearly distinguish between groups who might be expected to hold differing levels of knowledge about dementia, allowing for a fine-grained level of detail to be established when evaluating baseline understanding or knowledge change associated with educational intervention.


Assuntos
Demência , Educação em Saúde , Adolescente , Adulto , Idoso , Idoso de 80 Anos ou mais , Estudos de Coortes , Compreensão , Análise Fatorial , Feminino , Conhecimentos, Atitudes e Prática em Saúde , Inquéritos Epidemiológicos , Humanos , Internacionalidade , Masculino , Pessoa de Meia-Idade , Psicometria , Reprodutibilidade dos Testes , Adulto Jovem
10.
J Nurs Manag ; 25(7): 558-568, 2017 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-28516488

RESUMO

BACKGROUND: Relationships exist between aged care nurses' perceptions of psychosocial work characteristics, job satisfaction and mental health, suggesting these characteristics may be important for the management of aged care services. AIM: An expanded demand-control-support model that included justice perceptions was examined to determine its impact on multiple types of psychological and organisational well-being outcomes (i.e. job satisfaction, psychological distress and depression). METHOD: Data were collected from a sample of 173 aged care nurses using a self-report survey and analysed using hierarchical multiple regression. RESULTS: A significant proportion (27-28%) of the variance in aged care nurses' satisfaction, depression and psychological distress was explained by the psychosocial factors included in the model. Job control had the most consistent impact with direct effects on job satisfaction, psychological distress and depression. Informational justice was associated with both psychological distress and depression. CONCLUSIONS: Targeting job control may provide the biggest response for nurse managers in aged care, as it is likely to influence nurses' job satisfaction, psychological distress and depression. IMPLICATIONS FOR NURSING MANAGEMENT: Facility managers should implement organisational policies and procedures that promote higher levels of control over how nurses perform their work in order to improve nurse well-being in aged care settings.


Assuntos
Satisfação no Emprego , Saúde Mental/normas , Percepção , Poder Psicológico , Adulto , Estudos Transversais , Feminino , Geriatria/métodos , Humanos , Masculino , Pessoa de Meia-Idade , Autonomia Profissional , Análise de Regressão , Autorrelato , Inquéritos e Questionários , Recursos Humanos , Local de Trabalho/psicologia , Local de Trabalho/normas
11.
Health Expect ; 20(5): 1154-1162, 2017 10.
Artigo em Inglês | MEDLINE | ID: mdl-28397978

RESUMO

BACKGROUND: Older adults living in residential aged care facilities (RACFs) often experience limited opportunities for social connection despite close proximity to peers, which has implications for mental health and quality of life (QoL). The introduction of large-scale undergraduate health student placements in RACFs may enhance opportunities for meaningful engagement through social connection, although this remains unexplored. OBJECTIVE: This research explores whether interpersonal encounters between health students and RACF residents influence residents' opportunities for social connection and QoL. METHODS: A mixed methods design was employed which included questionnaire data from residents, and qualitative interview data from residents, family members and RACF staff. Data were collected during and after student placements to allow for an in-depth exploration of residents, family members and staff perspectives. RESULTS: Forty-three participants (28 residents, 10 staff and five family members) were recruited during 2014. Overall, many residents had clinical levels of depression, mild cognitive impairment and multiple morbidities, however reported moderate-to-good QoL. Thematic analysis was undertaken on interview transcripts, and three themes emerged: (i) social isolation and loneliness fostered by residents' age-related conditions, (ii) students expand socially supportive connections beyond the RACF and (iii) meaning making by sharing health experiences, which was found to help renegotiate older adults' pervasive narrative of vulnerability. CONCLUSION: Supported and structured health student placements in RACFs enable older adults to participate in meaningful encounters with younger people. These encounters focus on sharing health experiences and address long-standing issues of isolation and loneliness by providing opportunities for social connection.


Assuntos
Instituição de Longa Permanência para Idosos/organização & administração , Relações Interpessoais , Casas de Saúde/organização & administração , Qualidade de Vida/psicologia , Estudantes de Ciências da Saúde/psicologia , Adulto , Idoso , Feminino , Humanos , Solidão , Masculino , Pesquisa Qualitativa , Isolamento Social , Adulto Jovem
12.
J Am Geriatr Soc ; 64(6): 1329-34, 2016 06.
Artigo em Inglês | MEDLINE | ID: mdl-27321614

RESUMO

OBJECTIVES: To compare the psychometric performance of the Dementia Knowledge Assessment Scale (DKAS) and the Alzheimer's Disease Knowledge Scale (ADKS) when administered to a large international cohort before and after online dementia education. DESIGN: Comparative psychometric analysis with pre- and posteducation scale responses. SETTING: The setting for this research encompassed 7,909 individuals from 124 countries who completed the 9-week Understanding Dementia Massive Open Online Course (MOOC). PARTICIPANTS: Volunteer respondents who completed the DKAS and ADKS before (n = 3,649) and after (n = 878) completion of the Understanding Dementia MOOC. MEASUREMENTS: Assessment and comparison of the DKAS and ADKS included evaluation of scale development procedures, interscale correlations, response distribution, internal consistency, and construct validity. RESULTS: The DKAS had superior internal consistency, wider response distribution with less ceiling effect, and better discrimination between pre- and posteducation scores and occupational cohorts than the ADKS. CONCLUSION: The 27-item DKAS is a reliable and preliminarily valid measure of dementia knowledge that is psychometrically and conceptually sound, overcomes limitations of existing instruments, and can be administered to diverse cohorts to measure baseline understanding and knowledge change.


Assuntos
Demência/diagnóstico , Geriatria/educação , Conhecimentos, Atitudes e Prática em Saúde , Psicometria , Adolescente , Adulto , Idoso , Idoso de 80 Anos ou mais , Doença de Alzheimer/diagnóstico , Feminino , Avaliação Geriátrica , Humanos , Masculino , Pessoa de Meia-Idade
13.
Health Expect ; 19(6): 1251-1264, 2016 12.
Artigo em Inglês | MEDLINE | ID: mdl-26472594

RESUMO

BACKGROUND: Research on workforce development for high-quality dementia care more often focuses on enhancing employee knowledge and skill and less on managing employee stress and coping at work. OBJECTIVE: To review employee stress and coping in response to high job demands in community-based dementia care organizations in Tasmania, Australia. METHODS: Stress and coping in response to job roles of 25 community-based dementia care workers were reviewed using self-report questionnaire data. Data were analysed for descriptive results and at an individual case level. Individual participant scores were reviewed for clinically significant stress and coping factors to create worker profiles of adjustment. RESULTS: Two adjustment profiles were found. The 'global resilience' profile, where workers showed positive adjustment and resilience indicating they found their jobs highly rewarding, were very confident in their abilities at work and had a strong match between their personal and organizational values. The second 'isolated distress' profile was only found in a minority and included poor opportunities for job advancement, a missmatch in personal and work values or clinically high levels of psychological distress. CONCLUSION: Aged care workplaces that advocate employee well-being and support employees to cope with their work roles may be more likely to retain motivated and committed staff. Future research should consider employee stress and coping at the workforce level, and how this can influence high-quality care delivery by applying the measures identified for this study. Comparative research across different care settings using meta-analytic studies may then be possible.


Assuntos
Adaptação Psicológica , Demência/enfermagem , Pessoal de Saúde/psicologia , Resiliência Psicológica , Estresse Psicológico/psicologia , Estudos Transversais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Inquéritos e Questionários , Tasmânia
14.
Aging Ment Health ; 20(8): 793-803, 2016 08.
Artigo em Inglês | MEDLINE | ID: mdl-25978672

RESUMO

BACKGROUND: Face-to-face delivery of CBT is not always optimal or practical for informal dementia carers (DCs). Technology-based formats of CBT delivery (TB-CBT) have been developed with the aim to improve client engagement and accessibility, and lower delivery costs, and offers potential benefits for DCs. However, research of TB-CBT for DCs has maintained heavy reliance on therapist involvement. The efficacy of pure TB-CBT interventions for DCs is not currently established Methods: A systematic review of trials of pure TB-CBT intervention for DCs from 1995 was conducted. PsycINFO, Cochrane Reviews, Scopus and MedLine databases were searched using key terms related to CBT, carers and dementia. Four hundred and forty two articles were identified, and inclusion/exclusion criteria were applied; studies were only retained if quantitative data was available, and there was no active therapist contact. Four articles were retained; two randomized and two waitlist control trials. Methodological and reporting quality was assessed. Meta-analyses were conducted for the outcome measures of caregiver depression. RESULTS: Meta-analysis revealed small significant post-intervention effects of pure TB-CBT interventions for depression; equivalent to face-to-face interventions. However, there is no evidence regarding long-term efficacy of pure TB-CBT for DCs. The systematic review further identified critical methodological and reporting shortcomings pertaining to these trials Conclusions: Pure TB-CBT interventions may offer a convenient, economical method for delivering psychological interventions to DCs. Future research needs to investigate their long-term efficacy, and consider potential moderating and mediating factors underpinning the mechanisms of effect of these programs. This will help to provide more targeted interventions to this underserviced population.


Assuntos
Cuidadores/psicologia , Terapia Cognitivo-Comportamental/métodos , Demência , Tecnologia , Depressão , Feminino , Humanos , Masculino
15.
J Am Geriatr Soc ; 63(11): 2375-81, 2015 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-26503020

RESUMO

OBJECTIVES: To develop a reliable and valid dementia knowledge scale to address limitations of existing measures, support knowledge evaluation in diverse populations, and inform educational intervention development. DESIGN: A five-stage, systematic scale development process was employed to construct and assess the psychometric properties of the Dementia Knowledge Assessment Scale (DKAS). SETTING: Data for the study were generated in an online environment and during clinical dementia care placements from Australian (n = 1,321) and international respondents (n = 446). PARTICIPANTS: Volunteers from a dementia-related massive open online course (n = 1,651), medical students on clinical placement in a residential aged care facility (n = 40), and members of the Australian health workforce (n = 76). MEASUREMENTS: Psychometric properties of the DKAS were established using a literature review to assess the veracity of scale items, respondent feedback during pilot testing, a Delphi study with dementia experts, construction and review by an expert panel, evaluation of item difficulty, item-total and interitem correlations. Principal components analysis (PCA) was also performed along with measures of test-retest reliability, internal consistency, construct validity, and concurrent validity. RESULTS: The pilot DKAS was reduced from 40 to 27 items during analysis. PCA identified four distinct and interpretable factors. The revised DKAS displays high levels of test-retest reliability; internal consistency; and preliminary construct, concurrent, and factorial validity. CONCLUSION: The 27-item DKAS is reliable and shows preliminary validity for the assessment of knowledge deficiencies and change in those who provide care and treatment for people with dementia.


Assuntos
Demência , Conhecimento , Adulto , Austrália , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Psicometria , Reprodutibilidade dos Testes
16.
Appl Psychol Health Well Being ; 7(2): 230-48, 2015 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-26097155

RESUMO

OBJECTIVES: Dementia prevalence and the demand for dementia care are increasing. Informal caregiving accounts for a large proportion of dementia care, but can come at high cost for caregivers. Informal dementia caregivers are at higher risk for mental health problems than the general population. This study examines whether perceived change in leisure activities is one working mechanism linking stress and burden experience in dementia caregiving to lower mental health (depressive symptoms, anxiety symptoms, and reduced satisfaction with life), and whether there are group-based leisure activities that can buffer this detrimental effect. METHODS: A total of 346 informal Australian dementia caregivers (88.15% female, age 18-82 years) participated in an online study. RESULTS: Mediation and moderation analyses using multiple regression demonstrated that perceived changes in leisure activities linked caregiving stress and burden to lower mental health, and that membership in groups engaging in affiliation or social activities attenuates negative effects of caregiving. CONCLUSION: Informal dementia caregivers benefit from satisfying leisure activities. In particular, engaging in social activities and self-help groups buffered the negative impact of caregiving.


Assuntos
Cuidadores/psicologia , Demência , Atividades de Lazer/psicologia , Saúde Mental , Satisfação Pessoal , Adolescente , Adulto , Idoso , Idoso de 80 Anos ou mais , Ansiedade/etiologia , Depressão/etiologia , Feminino , Humanos , Relações Interpessoais , Masculino , Pessoa de Meia-Idade , Grupos de Autoajuda , Tasmânia , Adulto Jovem
17.
Psychol Health ; 30(11): 1259-73, 2015.
Artigo em Inglês | MEDLINE | ID: mdl-25925879

RESUMO

OBJECTIVE: The purpose of the study is to describe from a relational perspective, partners' psychological adjustment, coping and support needs for advanced prostate cancer. DESIGN: A mixed methods design was adopted, employing triangulation of qualitative and quantitative data, to produce dyadic profiles of adjustment for six couples recruited from the urology clinics of local hospitals in Tasmania, Australia. METHODS: Dyads completed a video-taped communication task, semi-structured interview and standardised self-report questionnaires. RESULTS: Themes identified were associated with the dyadic challenges of the disease experience (e.g. relationship intimacy, disease progression and carer burden). Couples with poor psychological adjustment profiles had both clinical and global locus of distress, treatment side-effects, carer burden and poor general health. Resilient couples demonstrated relationship closeness and adaptive cognitive and behavioural coping strategies. The themes informed the adaption of an effective program for couples coping with women's cancers (CanCOPE, to create a program for couples facing advanced prostate cancer (ProCOPE-Adv). CONCLUSION: Mixed method results inform the development of psychological therapy components for couples coping with advanced prostate cancer. The concomitance of co-morbid health problems may have implications for access and engagement for older adult populations in face-to-face intervention.


Assuntos
Ajustamento Emocional , Relações Interpessoais , Neoplasias da Próstata/psicologia , Cônjuges/psicologia , Idoso , Idoso de 80 Anos ou mais , Austrália , Cuidadores/psicologia , Progressão da Doença , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Neoplasias da Próstata/patologia , Pesquisa Qualitativa , Comportamento Sexual/psicologia , Inquéritos e Questionários
18.
BMC Geriatr ; 15: 5, 2015 Feb 06.
Artigo em Inglês | MEDLINE | ID: mdl-25656075

RESUMO

BACKGROUND: Escalating numbers of people are experiencing dementia in many countries. With increasing consumer needs, there is anticipated growth in the numbers of people providing diagnostic evaluations, treatments, and care. Ensuring a consistent and contemporary understanding of dementia across all of these groups has become a critical issue. This study aimed to reach consensus among dementia experts from English speaking countries regarding essential and contemporary knowledge about dementia. METHODS: An online Delphi study was conducted to examine expert opinion concerning dementia knowledge with three rounds of data collection. A sample of dementia experts was selected by a panel of Australian experts, including a geriatrician and three professors of aged care. Purposive selection was initially undertaken with the sample expanded through snowballing. Dementia experts (N = 19) included geriatricians, psychologists, psychiatrists, neuroscientists, dementia advocates, and nurse academics from the United Kingdom, United States, and Australia. In the first round, these participants provided open-ended responses to questions determining what comprised essential knowledge about dementia. In the second round, responses were summarised into 66 discrete statements that participants rated on the basis of importance. In the third round, a rank-ordered list of the 66 statements and a group median were provided and participants rated the statements again. The degree of consensus regarding importance ratings was determined by assessing median, interquartile range, and proportion of experts scoring above predetermined thresholds. Correlation scores were calculated for each statement after the final round to identify changes in statement scores. RESULTS: The Delphi experts identified 36 statements about dementia that they considered essential to understanding the condition. Statements about care for a person experiencing dementia and their care giver represented the largest response category. Other statements, for which full or very high consensus was reached, related to dementia characteristics, symptoms and progression, diagnosis and assessment, and treatment and prevention. CONCLUSIONS: These results summarise knowledge of dementia that is considered essential across expert representatives of key stakeholder groups from three countries. This information has implications for the delivery of care to people with the condition and the development of dementia education programs.


Assuntos
Demência , Adulto , Idoso , Atitude do Pessoal de Saúde , Austrália , Competência Clínica , Compreensão , Consenso , Técnica Delphi , Demência/diagnóstico , Demência/psicologia , Demência/terapia , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Reino Unido , Estados Unidos
19.
Health Expect ; 18(6): 1927-40, 2015 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-25041246

RESUMO

BACKGROUND: Care provided by student doctors and nurses is well received by patients in hospital and primary care settings. Whether the same is true for aged care residents of nursing homes with mild cognitive decline and their family members is unknown. OBJECTIVE: To investigate the perspectives of aged care residents with mild cognitive decline and their family members on interdisciplinary student placements in two residential aged care facilities (RACF) in Tasmania. DESIGN, SETTING AND PARTICIPANTS: A mixed methods design was employed with both qualitative and quantitative data collected. All participants were interviewed and completed a questionnaire on residents' quality of life, during or after a period of student placements in each facility (October-November, 2012). Qualitative data were coded for themes following a grounded theory approach, and quantitative data were analysed using SPSS. RESULTS: Twenty-one participants (13 residents and 8 family members) were recruited. Four themes were identified from the qualitative data and included (i) increased social interaction and facility vibrancy; (ii) community service and personal development, (iii) vulnerability and sensitivity (learning to care) and (iv) increased capacity and the confidence of enhanced care. Residents' quality of life was reported to be mostly good in the presence of the students, despite their high care needs. CONCLUSION: Residents with mild cognitive decline and their family members perceive a wide array of benefits of student provided care in RACFs including increased social interaction. Future quantitative research should focus on whether changes in care occur for residents as a result of student involvement.


Assuntos
Disfunção Cognitiva/psicologia , Família/psicologia , Instituição de Longa Permanência para Idosos , Estudantes de Medicina , Idoso , Disfunção Cognitiva/terapia , Estudos Transversais , Feminino , Teoria Fundamentada , Humanos , Relações Interpessoais , Masculino , Qualidade de Vida , Inquéritos e Questionários , Tasmânia
20.
J Palliat Care ; 30(3): 158-65, 2014.
Artigo em Inglês | MEDLINE | ID: mdl-25265739

RESUMO

The number of people with dementia is increasing rapidly worldwide. Commensurate with population ageing, the use of nursing homes in Australia (known as residential aged care facilities) for individuals with dementia is growing. As a terminal condition, dementia is best managed by instituting a palliative approach to care. A good knowledge of dementia, including its progression and management, among staff and families of people living with dementia is essential for clear decision making and the provision of appropriate care. Yet there is limited information regarding relative levels of dementia knowledge. This paper reports the results of a study that assessed dementia knowledge among these two cohorts using the Dementia Knowledge Assessment Tool; the study surveyed 279 staff members and 164 family members of residents with dementia. Dementia knowledge deficits were evident in both cohorts across a range of areas. It is critical that dementia knowledge deficits are identified and addressed in order to support evidence-based dementia care.


Assuntos
Cuidadores/psicologia , Demência/enfermagem , Família/psicologia , Conhecimentos, Atitudes e Prática em Saúde , Pessoal de Saúde/psicologia , Cuidados Paliativos , Idoso , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Recursos Humanos de Enfermagem/psicologia , Austrália Ocidental
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