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1.
BMC Geriatr ; 24(1): 338, 2024 Apr 12.
Artigo em Inglês | MEDLINE | ID: mdl-38609868

RESUMO

BACKGROUND: Research has highlighted a need to improve the quality of clinical documentation and data within aged care and disability services in Australia to support improved regulatory reporting and ensure quality and safety of services. However, the specific causes of data quality issues within aged care and disability services and solutions for optimisation are not well understood. OBJECTIVES: This study explored aged care and disability workforce (referred to as 'data-users') experiences and perceived root causes of clinical data quality issues at a large aged care and disability services provider in Western Australia, to inform optimisation solutions. METHODS: A purposive sample of n = 135 aged care and disability staff (including community-based and residential-based) in clinical, care, administrative and/or management roles participated in semi-structured interviews and web-based surveys. Data were analysed using an inductive thematic analysis method, where themes and subthemes were derived. RESULTS: Eight overarching causes of data and documentation quality issues were identified: (1) staff-related challenges, (2) education and training, (3) external barriers, (4) operational guidelines and procedures, (5) organisational practices and culture, (6) technological infrastructure, (7) systems design limitations, and (8) systems configuration-related challenges. CONCLUSION: The quality of clinical data and documentation within aged care and disability services is influenced by a complex interplay of internal and external factors. Coordinated and collaborative effort is required between service providers and the wider sector to identify behavioural and technical optimisation solutions to support safe and high-quality care and improved regulatory reporting.


Assuntos
Confiabilidade dos Dados , Documentação , Humanos , Idoso , Austrália/epidemiologia , Escolaridade , Qualidade da Assistência à Saúde
2.
Health Expect ; 27(2): e14010, 2024 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-38450803

RESUMO

OBJECTIVE: Decisional conflict is used increasingly as an outcome measure in advance care planning (ACP) studies. When the Decisional Conflict Scale (DCS) is used in anticipatory decision-making contexts, the scale is typically tethered to hypothetical scenarios. This study reports preliminary validation data for hypothetical scenarios relating to life-sustaining treatments and care utilisation to inform their broader use in ACP studies. METHODS: Three hypothetical scenarios were developed by a panel of multidisciplinary researchers, clinicians and community representatives. A convenience sample of 262 older adults were surveyed. Analyses investigated comprehensibility, missing data properties, sample norms, structural, convergent and discriminant validity. RESULTS: Response characteristics suggested that two of the scenarios had adequate comprehensibility and response spread. Missing response rates were unrelated to demographic characteristics. Predicted associations between DCS scores and anxiety (r's = .31-.37, p < .001), and ACP engagement (r's = -.41 to -.37, p < .001) indicated convergent validity. CONCLUSION: A substantial proportion of older adults reported clinically significant levels of decisional conflict when responding to a range of hypothetical scenarios about care or treatment. Two scenarios showed acceptable comprehensibility and response characteristics. A third scenario may be suitable following further refinement. PATIENT OR PUBLIC CONTRIBUTION: The scenarios tested here were designed in collaboration with a community representative and were further piloted with two groups of community members with relevant lived experiences; four people with life-limiting conditions and five current or former care partners.


Assuntos
Planejamento Antecipado de Cuidados , Humanos , Idoso , Ansiedade , Projetos de Pesquisa , Pesquisadores
3.
Health Qual Life Outcomes ; 21(1): 13, 2023 Jan 31.
Artigo em Inglês | MEDLINE | ID: mdl-36721146

RESUMO

BACKGROUND: This paper presents a novel methodology for translation and cross-cultural adaptation of health-related quality-of-life patient-reported outcome measures, incorporating the Delphi method. Specifically, we describe the process of translating the Pelvic Floor Distress Inventory-20 and Pelvic Floor Impact Questionnaire-7 from English to Norwegian using this method. METHODS: The multistep translation method combined the European Organization for Research and Treatment of Cancer Quality of Life guidelines, an Expert Panel review, and the Delphi method. It comprised two independent forward- and back-translations. While the bilingual pelvic floor Expert Panel ensured rigorous cross-checking and effective cross-cultural adaptation, the addition of the Delphi method (comprising the attributes of anonymity, controlled feedback, and statistical group response) further established consensus on translated items. OUTCOMES: The application of the Delphi method in the Expert Panel phase proved adequate in producing comprehensible intermediate Norwegian versions ready for pilot testing. The Expert Panel reviewed the comments made by patients completing the instruments and offered advice to allow final translated versions to be produced and tested for measurement properties. This iterative approach, internal logic, and anonymity between rounds improved the evaluations that the panel members provided, which in turn enhanced the final translated Patient Reported Outcome Measures (PROMs). CONCLUSIONS: To our knowledge, this work represents the first demonstration of the application of an Expert Panel review incorporating a Delphi method to assess health-related quality-of-life instruments. The controlled feedback approach, iterative nature, internal logic, and anonymity of the Delphi consensus method appeared to ensure a good cross-cultural adaptation of these PROMs.


Assuntos
Comparação Transcultural , Qualidade de Vida , Humanos , Traduções , Consenso , Medidas de Resultados Relatados pelo Paciente
4.
Neurol Sci ; 44(7): 2401-2411, 2023 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-36780031

RESUMO

OBJECTIVES: This study aimed to evaluate the mediational role of change in psychosocial abilities, adjustment and participation on change in motor and cognitive function from admission to discharge from a staged community-based brain injury rehabilitation (SCBIR) service in Western Australia, 2011-2020. METHODS: A retrospective cohort study of n = 324 adults with ABI enrolled in SCBIR using routinely collected rehabilitation outcome measures data. Motor and cognitive function were assessed with the UK Functional Independence and Assessment Measure and psychosocial function with the Mayo-Portland Adaptability Inventory-4. Six multilevel mediation regression analyses were conducted to determine whether change in psychosocial function (abilities, adjustment and participation) mediated change in motor and cognitive function from admission to discharge. RESULTS: Participants demonstrated clinically significant improvements in both motor (+ 11.8, p < 0.001) and cognitive (+ 9.5, p < 0.001) functioning from admission to discharge. Statistically significant improvements in psychosocial abilities (- 4.8, p < 0.001), adjustment (- 2.9, p = 0.001) and participation (- 2.5, p < 0.001) were also seen but were not clinically significant. Mediation analyses showed that participation accounted for 81% of improvements in motor function at discharge and 71% of cognitive function improvements. Adjustment accounted for 26% and 32% of change in motor and cognitive function, respectively. Abilities accounted for 60% of change in cognitive function but did not significantly influence change in motor function. Changes in psychosocial participation fully mediated change in motor function during neurorehabilitation. CONCLUSIONS: Psychosocial function, particularly participation, is an important driver of motor and cognitive recovery throughout neurorehabilitation. Functional rehabilitation programs should target psychosocial improvement as an important mechanism of change.


Assuntos
Lesões Encefálicas , Reabilitação Neurológica , Adulto , Humanos , Estudos Retrospectivos , Funcionamento Psicossocial , Lesões Encefálicas/reabilitação , Cognição/fisiologia
5.
Am J Geriatr Psychiatry ; 30(12): 1313-1323, 2022 12.
Artigo em Inglês | MEDLINE | ID: mdl-35680539

RESUMO

OBJECTIVES: To determine if behavioral activation (BA) delivered by trained staff decreases prevalence of clinically significant symptoms of depression among older adults living in residential aged care facilities (RACFs). METHODS: Clustered, randomized, single-blinded, controlled trial of BA for adults aged over 60 years living permanently in a RACF with symptoms of depression (Patient Health Questionnaire, PHQ-9 ≥ 5). BA was delivered over 8-12 weeks using a structured workbook. The proportion of residents with PHQ-9 ≥ 10 at weeks 12, 26, and 52, as well as anxiety symptoms (GAD-7), physical (PCS), and mental (MCS) quality of life, loneliness, and loss to follow-up were main outcomes of interest RESULTS: We recruited 54 RACFs (26 intervention) and 188 of their residents (89 intervention). Participants were aged 61-100 years and 132 (70.2%) were women. PHQ-9 ≥ 10 interacted with BA at week 12 (OR = 0.34, 95%CI = 0.11-1.07), but differences between the groups were not statistically significant at any time-point. GAD-7 ≥ 10 interacted with BA at week 26 (OR = 0.12, 95%CI = 0.02-0.58), but not at any other time-point. Overall, the intervention had no effect on the scores of the PHQ-9, GAD-7, PCS, MCS, and loneliness scale. Loss to follow-up was similar between groups. Adherence to all stages of the intervention was poor (36.2%). CONCLUSIONS: Disruption by the COVID-19 pandemic and staffing issues in RACFs undermined recruitment and adherence. In such a context, a BA program delivered by RACF staff was not associated with better mental health outcomes for residents over 52 weeks.


Assuntos
COVID-19 , Qualidade de Vida , Feminino , Humanos , Pessoa de Meia-Idade , Idoso , Masculino , Qualidade de Vida/psicologia , Depressão/psicologia , Pandemias , Casas de Saúde
6.
Int J Geriatr Psychiatry ; 36(10): 1531-1540, 2021 10.
Artigo em Inglês | MEDLINE | ID: mdl-33929059

RESUMO

OBJECTIVES: Up to 90% of people with dementia in long term care (LTC) have hearing and/or vision impairment. Hearing/vision difficulties are frequently under-recognised or incompletely managed. The impacts of hearing/vision impairment include more rapid cognitive decline, behavioural disturbances, reduced quality of life, and greater care burden. This research investigated LTC staff knowledge, attitudes and practice regarding hearing/vision care needs for residents with dementia. METHODS: A survey of staff in LTC facilities in England, South Korea, India, Greece, Indonesia and Australia. Respondents used a five-point scale to indicate agreement or YES/NO response to questions regarding sensory-cognitive care knowledge (what is known); attitudes (what is thought); practice (what is done). RESULTS: Respondents reported high awareness of hearing/vision care needs, although awareness of how to identify hearing/vison difficulties or refer for assessment was low. Most felt that residents were not able to use hearing/vision devices effectively due to poor fit, being poorly tolerated or lost or broken devices. A substantial minority of respondents reported low confidence in supporting use of assistive hearing/vision devices, with lack of training the main reason. Most staff did not undertake routine checking of hearing/vision devices, and it was rare for facilities to have designated staff responsible for sensory needs. Variation among countries was not significant after accounting for staff experience and having received dementia training. CONCLUSIONS: There is a need to improve sensory support for people with dementia in LTC facilities internationally. Practice guidelines and training to enhance sensory-cognitive knowledge, attitudes and practice in professional care teams is called for.


Assuntos
Demência , Assistência de Longa Duração , Demência/terapia , Grécia , Conhecimentos, Atitudes e Prática em Saúde , Audição , Humanos , Indonésia , Qualidade de Vida , República da Coreia
7.
Eur J Cancer Care (Engl) ; 29(5): e13237, 2020 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-32400938

RESUMO

INTRODUCTION: The aim of this study was to evaluate how psychosocial interventions for children aged 0-18 years of a parent with cancer meet their needs, using key needs as consumer-based "standards." METHODS: A systematic literature review was conducted. Fifteen interventions met inclusion criteria and were assessed against six key needs identified by Ellis et al. (Eur. J. Cancer Care, 26, 2017, e12432): (1) provide children with age-appropriate information about their parent's cancer; (2) support family communication; (3) normalise and reduce feelings of isolation through peer support; (4) provide a space to share feelings; (5) individually tailor support; and (6), where appropriate, provide specialised bereavement support. RESULTS: No intervention clearly met all six needs, but each partially addressed at least two needs, and three clearly met at least four needs. The most commonly addressed need was supporting family communication, and the least addressed need was bereavement support. CONCLUSION: Interventions identified in this review addressed some needs of children impacted by a parent's cancer. This research provides a framework to inform the creation, modification and implementation of psychosocial support interventions that best meet the needs of these children, thereby mobilising consumer-focused service provision.


Assuntos
Neoplasias , Intervenção Psicossocial , Criança , Comunicação , Humanos , Neoplasias/terapia , Relações Pais-Filho , Pais
8.
Brain Inj ; 34(6): 713-722, 2020 05 11.
Artigo em Inglês | MEDLINE | ID: mdl-32255368

RESUMO

OBJECTIVE: To determine differences in rehabilitation gains made by people with an acquired brain injury undergoing staged community-based brain injury rehabilitation (SCBIR) at different times between injury and admission. METHOD: Retrospective cohort analysis of routinely collected demographic and rehabilitation data from clients admitted to SCBIR service 2011-2017 (n=92). Outcome measures: Mayo-Portland Adaptability Inventory-4 (MPAI-4) and UK Functional Assessment Measure (UK FIM+FAM) collected on admission and annually thereafter until discharge. Analysis was stratified by time since injury on admission: 'Early' (<1 year (n=36)), 'Middle' (1-2 years (n=34)) and 'Late' (>2 years (n=22)). Between-group differences were tested using bootstrapped one-way ANOVA. Within-group differences were tested using paired T tests. RESULTS: Total cohort made significant gains in MPAI-4 and UK FIM+FAM total and all subscales (p = .001). Early group made greatest change in all subscales of both outcome measures (p < .01). Middle cohort improved significantly in all subscales (p < .02) excluding MPAI-4 Adjustment. Late cohort still made statistically significant gains in all UK FIM+FAM subscales (p < .05) and MPAI-4 Participation (p < .01). Item level changes are presented. CONCLUSION: More than 2 years after injury, people are able to make improvements in participation and functional independence following SCBIR.


Assuntos
Lesões Encefálicas , Cognição , Hospitalização , Humanos , Avaliação de Resultados em Cuidados de Saúde , Estudos Retrospectivos , Resultado do Tratamento
9.
J Psychosoc Oncol ; 38(1): 73-88, 2020.
Artigo em Inglês | MEDLINE | ID: mdl-31314713

RESUMO

Purpose: This study investigated how coping impacts offspring's adaption to parental cancer in terms of post-traumatic growth, resilience, and emotion; and how coping differs between offspring.Methods: Participants (18-34 years; n = 244) completed an online survey. Data were analyzed using generalized linear modeling and multinomial regression.Findings: Higher levels of adaptive coping was associated with higher post-traumatic growth, resiliency, and positive affect; whereas maladaptive coping was associated with lower resiliency and higher negative affect. Females and offspring who did not access support for their parent's cancer reported higher adaptive coping. Offspring bereaved by parental cancer reported higher levels of maladaptive coping. Offspring whose parents' cancer was of shorter duration and those who lived with their ill parent had lower adaptive and maladaptive coping.Conclusions/Implications: Adaptive coping appeared beneficial to offspring. Supportive interventions may benefit from focusing on increasing adaptive coping, particularly among bereaved offspring.


Assuntos
Adaptação Psicológica , Filho de Pais com Deficiência/psicologia , Neoplasias , Adolescente , Adulto , Filho de Pais com Deficiência/estatística & dados numéricos , Emoções , Feminino , Humanos , Masculino , Crescimento Psicológico Pós-Traumático , Resiliência Psicológica , Inquéritos e Questionários , Adulto Jovem
10.
Support Care Cancer ; 27(4): 1229-1236, 2019 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-30259135

RESUMO

PURPOSE: Australian population data regarding the number and sociodemographic characteristics of children affected by a parent's cancer are not currently available. Moreover, predictions that this population is increasing have not been tested. This study provides data on the number and sociodemographic characteristics of parents with cancer and their young children (aged 0-11 years) in the state of Western Australia, and investigates whether long-term trends in this population have increased over time. METHODS: Linked administrative data were used to describe parents with malignant cancer and their children aged 0-11 years at the time of diagnosis between 1982 and 2015 in Western Australia. Parents and children were described overall and by year of diagnosis and sociodemographic characteristics. A Poisson regression was used to investigate trends in the number of children affected, accounting for population growth. Incidence counts of parental cancer characteristics were included. RESULTS: Between 1982 and 2015, 15,938 parents were diagnosed with a malignant cancer, affecting 25,901 children. In 2015, 0.28% of children in Western Australia experienced a parent's diagnosis. The number of children affected increased over time; however, this was accounted for by population growth. The majority of families lived in regional areas and were of high socioeconomic status. Older children and older parents most frequently experienced parental cancer. Skin and breast cancer were the most common diagnoses. CONCLUSIONS: A substantial number of families are affected by parental cancer. Results can guide intervention development and delivery to children of different developmental stages, and inform decisions regarding resource allocation and health service accessibility.


Assuntos
Filho de Pais com Deficiência/estatística & dados numéricos , Neoplasias , Pais , Adulto , Idoso , Idoso de 80 Anos ou mais , Criança , Pré-Escolar , Feminino , Acessibilidade aos Serviços de Saúde/economia , Acessibilidade aos Serviços de Saúde/estatística & dados numéricos , Humanos , Incidência , Lactente , Recém-Nascido , Estudos Longitudinais , Masculino , Pessoa de Meia-Idade , Sistema de Registros , Alocação de Recursos/economia , Alocação de Recursos/estatística & dados numéricos , Estudos Retrospectivos , Classe Social , Austrália Ocidental/epidemiologia , Adulto Jovem
11.
Psychooncology ; 27(1): 114-124, 2018 01.
Artigo em Inglês | MEDLINE | ID: mdl-28623651

RESUMO

OBJECTIVE: Throughout a parent's cancer diagnosis and treatment, families are likely to turn to the Internet to find social, emotional, and informational support services. It is important that professionals understand the content and availability of support discoverable through Web searches. This study identified and described Web-based information regarding support services offered to families when a parent has cancer. METHODS: Predefined key search terms were searched across 2 public Web browsers for a period of 3 months. Web-based information of support services (n = 25) was abstracted, and their key criteria examined. RESULTS: Of services offering face-to-face support (n = 22), more were founded by persons impacted by cancer (n = 10) (patients, parents, and offspring) than professionals (n = 4). Services offered online were created by health organisations and universities (n = 3). It appeared several service programs were delivered by volunteers, support staff, or facilitators, rather than registered health professionals or those with professional qualifications. Few services supported young children (under 5 years) or the parents themselves. CONCLUSION: Support services for families affected by a parent's cancer is relatively difficult to find through Web searches. Ambiguity around staff qualifications or evidence-base of support may hinder layperson engagement. Services offering face-to-face support were often founded by those directly affected by cancer; conversely, services founded by persons with assumable expertise (health organisation and university staff) were limited to online support. Such findings highlight a possible discrepancy in consumer and provider priorities and have implications for current understandings of psychosocial support needs and service development for families affected by a parent's cancer.


Assuntos
Família/psicologia , Internet , Neoplasias/psicologia , Apoio Social , Adulto , Criança , Pré-Escolar , Feminino , Pessoal de Saúde , Humanos , Masculino , Pais/psicologia
12.
J Adolesc ; 65: 61-71, 2018 06.
Artigo em Inglês | MEDLINE | ID: mdl-29549783

RESUMO

This study reviewed the literature regarding the psychological, social, and behavioural impact of parental cancer on offspring aged 10-24 years, at the time of the parent's first diagnosis. A systematic literature review was conducted following 2015 PRISMA guidelines. Seven studies met inclusion criteria. Offspring were impacted by their parent's cancer and experienced psychological and behavioural problems. Daughters and offspring who experienced more problems at their parent's diagnosis appeared to be most impacted. Offspring refrained from communicating their disease-related concerns, but expected their parents to communicate openly. Turning to oneself and peer-support were coping strategies used by offspring. The majority of offspring were significantly impacted by their parent's cancer. The paucity of literature focusing on offspring aged 10-24 years at the time of their parent's incident cancer diagnosis indicates that research has overlooked offspring age at their parent's cancer onset as a factor that may influence their future outcomes.


Assuntos
Acontecimentos que Mudam a Vida , Neoplasias/psicologia , Relações Pais-Filho , Pais , Adolescente , Criança , Humanos , Adulto Jovem
13.
Int Urogynecol J ; 28(7): 1005-1017, 2017 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-28062903

RESUMO

INTRODUCTION AND HYPOTHESIS: The goal was to translate into Norwegian, and validate, short versions of the Pelvic Floor Distress Inventory (PFDI-20) and the Pelvic Floor Impact Questionnaire (PFIQ-7) using a sample of women with symptomatic pelvic organ prolapse and pelvic floor dysfunction. METHODS: Modified European Organization for Research and Treatment of Cancer Guidelines were used for translation and cultural adaptation. Of 212 eligible Norwegian women who consented to participate, 205 completed the questionnaires, of whom 50 were retested after 1 - 3 weeks, and 76 were tested 6 months after surgery. Reliability, validity and responsiveness were evaluated. Additionally, interpretability, the smallest detectable change, the standard error of measurement, floor and ceiling effects, and the percentages of missing items are reported. RESULTS: Reliability ranged from 0.66 to 0.93 and intraclass correlation coefficients from 0.85 to 0.94. Both construct validity and responsiveness were found to be adequate. The responsiveness of the PFDI-20 was further supported by areas under the curve above 0.70. Estimates were lower for the PFIQ-7. The smallest detectable changes at the individual level were 15 - 21 % and 17 - 27 % for the PFDI-20 and PFIQ-7, respectively. The absolute values of the minimal important changes in the total scores were 48 and 47, respectively. No floor or ceiling effects were evident in the distributions of the PFDI-20 and PFIQ-7 total scores. CONCLUSIONS: The translated questionnaires provided adequate reliability, validity and good responsiveness to change. These short versions of the PFDI and PFIQ are robust measuring instruments that will enable symptom severity and health-related quality of life to be evaluated in the Norwegian context.


Assuntos
Distúrbios do Assoalho Pélvico/diagnóstico , Adulto , Idoso , Idoso de 80 Anos ou mais , Feminino , Humanos , Pessoa de Meia-Idade , Noruega , Psicometria , Inquéritos e Questionários
14.
Support Care Cancer ; 24(7): 3235-51, 2016 07.
Artigo em Inglês | MEDLINE | ID: mdl-27079580

RESUMO

PURPOSE: This paper reviewed the peer-reviewed scientific literature on well-being of children impacted by a parent with cancer. METHOD: An integrative review of peer-reviewed literature between 2000 and 2015 regarding parental cancer and its impact on families was conducted by searching relevant databases using predefined key search terms. A thematic analysis was undertaken on literature that met inclusion criteria. RESULTS: Forty-nine studies met the criteria for this review, and five major themes were established: impact of cancer, communication, coping strategies, parenting factors mediating impact, and support services. There was considerable variability in study design, methodological approaches, and findings. In the majority of studies, children were significantly impacted by the parent's cancer diagnosis and exhibited distress. Daughters appeared to experience worsened mental health, and sons experienced a greater totality of internalizing and externalizing problems. Children of all ages were impacted by their parent's cancer diagnosis and initiated a number of coping strategies in response. Despite this, a significant number of studies revealed that parents underestimated the impact that their cancer had on their children. Family functioning, as well as the ill parents' gender, coping strategies, cancer severity, and mental and physical health mediated their children's well-being. Parent-child communication was a key element in supporting children. CONCLUSION: Parental cancer may impact children's long-term well-being. Further investigations are needed in this area. Additionally, review of support programs and interventions are warranted in terms of their uptake and impact on families affected by a parent's cancer.


Assuntos
Neoplasias/psicologia , Relações Pais-Filho , Pais/psicologia , Adaptação Psicológica , Adulto , Criança , Feminino , Humanos , Masculino
15.
Disabil Health J ; 17(3): 101591, 2024 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-38429203

RESUMO

BACKGROUND: Survivors of acquired brain injury (ABI) are left with long-term disability and an increased risk of mortality years post-injury. OBJECTIVE: To examine 10-year mortality in adults with ABI after discharge from post-acute care and identify modifiable risk factors to reduce long-term mortality risk. METHODS: Retrospective cohort study of 586 adults with traumatic (TBI) or non-traumatic brain injury (NTBI), or neurologic condition, consecutively discharged from a post-acute rehabilitation service in Western Australia from 1-Mar-1991 to 31-Dec-2017. Data sources included rehabilitation records, and linked mortality, hospital, and emergency department data. Survival status at 10 years post-discharge was determined. All-cause and cause-specific age- and sex-adjusted standardised mortality ratios (SMR) by ABI diagnosis were calculated using Australian population reference data. Risk factors were examined using multilevel cox proportional hazards regression. RESULTS: Compared with the Australian population, 10-year all-cause mortality was significantly elevated for all diagnosis cohorts, with the first 12 months the highest risk period. Accidents or intentional self-harm deaths were elevated in TBI (13.2, 95%CI 5.4; 12.1). Neurodegenerative disease deaths were elevated in Neurologic (21.9, 95%CI 13.0; 30.9) and Stroke (19.8; 95%CI 2.4; 27.2) cohorts. Stroke (20.8; 95%CI 7.9; 33.8) and circulatory disease deaths (6.2; 95%CI 2.3; 9.9) were also elevated in Stroke. Psychiatric comorbidity was the strongest risk factor followed by older age, geographical remoteness, and cardiac, vascular, genitourinary and renal comorbidity. Clinically significant improvement in functional independence and psychosocial functioning significantly reduced mortality risk. CONCLUSIONS: Individuals with ABI have an elevated risk of mortality years post-injury. Comorbidity management, continuity of care, and rehabilitation are important to reduce long-term mortality risk.


Assuntos
Lesões Encefálicas , Pessoas com Deficiência , Alta do Paciente , Humanos , Masculino , Feminino , Austrália Ocidental/epidemiologia , Estudos Retrospectivos , Pessoa de Meia-Idade , Adulto , Idoso , Fatores de Risco , Alta do Paciente/estatística & dados numéricos , Lesões Encefálicas/mortalidade , Pessoas com Deficiência/estatística & dados numéricos , Adulto Jovem , Cuidados Semi-Intensivos/estatística & dados numéricos , Cuidados Semi-Intensivos/métodos , Idoso de 80 Anos ou mais , Modelos de Riscos Proporcionais , Adolescente , Estudos de Coortes , Lesões Encefálicas Traumáticas/mortalidade , Lesões Encefálicas Traumáticas/complicações , Sobreviventes/estatística & dados numéricos , Causas de Morte
16.
Disabil Rehabil ; 46(6): 1034-1044, 2024 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-36861777

RESUMO

PURPOSE: To identify the experiences and needs of dependent children who have a parent with an acquired brain injury (ABI) using a systematic review and thematic synthesis. MATERIALS AND METHODS: A systematic search of Medline, Embase, PsycINFO, CINAHL Plus, and Web of Science was conducted. The search included variants of: "children," "parents," "acquired brain injury," and "experiences" or "needs." Eligible articles reported on the experiences/needs of dependent children who have a parent with an ABI, from the child's perspective. Thematic analysis was used to identify themes. RESULTS: A total of 4895 unique titles were assessed, and 9 studies met inclusion. Four themes were identified: (1) Sustained Emotional Toll (subthemes: (i) Initial Shock and Distress; (ii) Ongoing Loss and Grief; (iii) Present-Day Stress and Emotions), (2) Responsibilities Change and Children Help Out, (3) Using Coping Strategies (subtheme: Talking Can Help), and (4) Wanting Information about the Injury. CONCLUSION: Themes highlighted significant disruption and challenges to children's wellbeing across development, with ongoing and considerable impacts many years after the parent's injury. The nature of the experiences shifted with time since the parent's injury. These children need ongoing support starting shortly after their parent's injury that is grounded in their particular experiences.IMPLICATIONS FOR REHABILITATIONWhen a parent has an acquired brain injury (ABI), dependent children and adolescents face emotional upheaval, significant stressors, increased responsibilities, and lack of information about their parent's injury that persist even many years after injury.The nature of these experiences and therefore their needs change based on the acute versus later stages of the parent's injury.Children often do not ask questions or tell others how they feel, which means that they need support that asks about, and listens and responds to their needs.Support for children needs to start soon after the parent's injury, be grounded in the lived experiences of this group, consider their parent's recovery stage, and be embedded as part of service provision rather than rely on children or families to make service contact.


Assuntos
Lesões Encefálicas , Pais , Criança , Humanos , Adolescente , Pais/psicologia , Emoções , Pesar , Capacidades de Enfrentamento
17.
BMJ Open ; 14(3): e080030, 2024 Mar 19.
Artigo em Inglês | MEDLINE | ID: mdl-38508623

RESUMO

INTRODUCTION: This protocol describes the myTBI study which aims to: (1) develop an online psychoeducation platform for people with traumatic brain injury (TBI), their family members/caregivers, and healthcare staff to improve psychosocial adjustment to TBI across different phases of injury (acute, postacute, and chronic), and (2) undertake an evaluation of efficacy, acceptability, and feasibility. METHODS AND ANALYSIS: A three-stage mixed-methods research design will be used. The study will be undertaken across four postacute community-based neurorehabilitation and disability support services in Western Australia. Stage 1 (interviews and surveys) will use consumer-driven qualitative methodology to: (1) understand the recovery experiences and psychosocial challenges of people with TBI over key stages (acute, postacute, and chronic), and (2) identify required areas of psychosocial support to inform the psychoeducation platform development. Stage 2 (development) will use a Delphi expert consensus method to: (1) determine the final psychoeducation modules, and (2) perform acceptance testing of the myTBI platform. Finally, stage 3 (evaluation) will be a randomised stepped-wedge trial to evaluate efficacy, acceptability, and feasibility. Outcomes will be measured at baseline, postintervention, follow-up, and at final discharge from services. Change in outcomes will be analysed using multilevel mixed-effects modelling. Follow-up surveys will be conducted to evaluate acceptability and feasibility. ETHICS AND DISSEMINATION: Ethics approval was granted by North Metropolitan Health Service Mental Health Research Ethics and Governance Office (RGS0000005877). Study findings will be relevant to clinicians, researchers, and organisations who are seeking a cost-effective solution to deliver ongoing psychoeducation and support to individuals with TBI across the recovery journey. TRIAL REGISTRATION NUMBER: ACTRN12623000990628.


Assuntos
Lesões Encefálicas Traumáticas , Sistemas de Apoio Psicossocial , Humanos , Lesões Encefálicas Traumáticas/terapia , Saúde Mental , Austrália Ocidental , Estudos de Viabilidade , Qualidade de Vida
18.
Implement Sci ; 19(1): 24, 2024 Mar 04.
Artigo em Inglês | MEDLINE | ID: mdl-38438918

RESUMO

INTRODUCTION: Clinical practice guidelines recommend against the routine use of psychotropic medications in residential aged care facilities (RACFs). Knowledge brokers are individuals or groups who facilitate the transfer of knowledge into practice. The objective of this trial is to evaluate the effectiveness and cost-effectiveness of using knowledge brokers to translate Australia's new Clinical Practice Guidelines for the Appropriate Use of Psychotropic Medications in People Living with Dementia and in Residential Aged Care. METHODS AND ANALYSIS: The Evidence-based Medication knowledge Brokers in Residential Aged CarE (EMBRACE) trial is a helix-counterbalanced randomised controlled trial. The 12-month trial will be conducted in up to 19 RACFs operated by four Australian aged care provider organisations in Victoria, New South Wales, Western Australia and Queensland. RACFs will be randomised to receive three levels of implementation strategies (knowledge broker service, pharmacist-led quality use of medications education activities and distribution of the Guidelines and supporting materials) across three medication contexts (antipsychotics, benzodiazepines and antidepressants). Implementation strategies will be delivered by an embedded on-site aged care pharmacist working at a system level across each participating RACF. All RACFs will receive all implementation strategies simultaneously but for different medication contexts. The primary outcome will be a composite dichotomous measure of 6-month RACF-level concordance with Guideline recommendations and good practice statements among people using antipsychotics, benzodiazepines and antidepressants for changed behaviours. Secondary outcomes will include proportion of residents with Guideline concordant use of antipsychotics, benzodiazepines and antidepressants measured at the RACF-level and proportion of residents with psychotropic medication use, hospitalisation, falls, falls with injury, polypharmacy, quality of life, activities of daily living, medication incidents and behavioural incidents measured at the RACF-level. DISCUSSION: The EMBRACE trial investigates a novel guideline implementation strategy to improve the safe and effective use of psychotropic medications in RACFs. We anticipate that the findings will provide new information on the potential role of knowledge brokers for successful and cost-effective guideline implementation. TRIAL REGISTRATION: Australian New Zealand Clinical Trials Registry (ANZCTR): ACTRN12623001141639. Registered 6 November 2023 - retrospectively registered, https://www.anzctr.org.au/TrialSearch.aspx .


Assuntos
Atividades Cotidianas , Antipsicóticos , Humanos , Idoso , Qualidade de Vida , Benzodiazepinas , Antidepressivos , Vitória , Ensaios Clínicos Controlados Aleatórios como Assunto
19.
Inquiry ; 60: 469580231160898, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-37278270

RESUMO

This review explored the impact of the COVID-19 pandemic on people with cognitive impairment living in aged care facilities. It also considered policy and organizational responses to COVID-19, and makes recommendations to ameliorate the impact of the pandemic on residents with cognitive impairment in aged care facilities. ProQuest, PubMed, CINAHL, Google Scholar, and Cochrane Central were searched April-May 2022 for peer reviewed articles, and an integrative review of reviews was conducted. Nineteen reviews were identified which referred to people with cognitive impairment living in residential aged care facilities (RACFs) during COVID-19. Negative impacts were highlighted, including COVID-19 related morbidity and mortality, social isolation, and cognitive, mental health and physical decline. Few research articles and policy responses consider people with cognitive impairment in residential aged care. Reviews highlighted that social engagement of residents should be better enabled to reduce the impact of COVID-19. However, residents with cognitive impairment may have inequitable access to communications technology for the purposes of assessment, health care and social engagement, and require more support (along with their families) to access this technology. Greater investment in the residential aged care sector (eg, for workforce and training) is required to address the significant impacts of the COVID-19 pandemic on people with cognitive impairment.


Assuntos
COVID-19 , Disfunção Cognitiva , Idoso , Humanos , Pandemias , Disfunção Cognitiva/epidemiologia , Instituição de Longa Permanência para Idosos , Atenção à Saúde
20.
Australas J Ageing ; 42(1): 9-19, 2023 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-36040129

RESUMO

OBJECTIVES: The constructs of health, well-being and quality of life are not routinely understood or measured for people accessing aged care services. This study aimed to identify and validate theoretical domains of health, well-being and quality of life for recipients of care, their informal carers and staff, and inform the development of a person-centred outcomes measurement framework. METHODS: First, a rapid review to identify recurrent domains of health, well-being and quality-of-life in aged care, using systematic searches of electronic databases, and review of grey literature, following the PRISMA guidelines. Second, establish content validity of identified domains using (a) Delphi technique with n = 134 aged care staff, care recipients and caregivers, and (b) comparability with categories within the International Classification of Functioning, Disability and Health (ICF) and ICF Geriatric Core Set. RESULTS: From 972 records detected in the rapid review, 19 peer-reviewed research articles and 27 grey literature sources were included in the content analysis. Twenty-four domains and 109 concepts were identified, and health, quality of life, security and food and nutrition were ranked as the most important. One domain, cognition, linked to both the Geriatric Core Set and ICF, and 37% of domains and 39% of concepts were evident within the ICF. CONCLUSIONS: This study identified and validated 24 important domains of health, well-being and quality of life for the older person receiving care, their informal carers and staff. These domains can be used to guide the selection of outcome measures and facilitate person-centred care and care planning.


Assuntos
Pessoas com Deficiência , Qualidade de Vida , Humanos , Idoso , Avaliação da Deficiência , Classificação Internacional de Funcionalidade, Incapacidade e Saúde , Avaliação de Resultados em Cuidados de Saúde/métodos
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