Your browser doesn't support javascript.
loading
Show: 20 | 50 | 100
Results 1 - 20 de 119
Filter
1.
BMJ Open ; 14(6): e081425, 2024 Jun 25.
Article in English | MEDLINE | ID: mdl-38925706

ABSTRACT

INTRODUCTION: Over 50% of people affected by cancer report unmet support needs. To address unmet information and psychological needs, non-government organisations such as Cancer Councils (Australia) have developed state-based telephone cancer information and support services. Due to competing demands, evidence of the value of these services is needed to ensure that future investment makes the best use of scarce resources. This research aims to determine the costs and broader economic and social value of a telephone support service, to inform future funding and service provision. METHODS AND ANALYSIS: A codesigned, evaluative social return on investment analysis (SROI) will be conducted to estimate and compare the costs and monetised benefits of Cancer Council Victoria's (CCV) telephone support line, 13 11 20, over 1-year and 3-year benefit periods. Nine studies will empirically estimate the parameters to inform the SROI and calculate the ratio (economic and social value to value invested): step 1 mapping outcomes (in-depth analysis of CCV's 13 11 20 recorded call data; focus groups and interviews); step 2 providing evidence of outcomes (comparative survey of people affected by cancer who do and do not call CCV's 13 11 20; general public survey); step 3 valuing the outcomes (financial proxies, value games); step 4 establishing the impact (Delphi); step 5 calculating the net benefit and step 6 service improvement (discrete choice experiment (DCE), 'what if' analysis). Qualitative (focus groups, interviews) and quantitative studies (natural language processing, cross-sectional studies, Delphi) and economic techniques (willingness-to-pay, financial proxies, value games, DCE) will be applied. ETHICS AND DISSEMINATION: Ethics approval for each of the studies will be sought independently as the project progresses. So far, ethics approval has been granted for the first two studies. As each study analysis is completed, results will be disseminated through presentation, conferences, publications and reports to the partner organisations.


Subject(s)
Cost-Benefit Analysis , Neoplasms , Humans , Neoplasms/therapy , Neoplasms/economics , Australia , Telephone , Research Design , Social Support
2.
JNCI Cancer Spectr ; 8(4)2024 Jul 01.
Article in English | MEDLINE | ID: mdl-38897655

ABSTRACT

OBJECTIVE: Although the benefits of consumer involvement in research and health care initiatives are known, there is a need to optimize this for all people with cancer. This systematic review aimed to synthesize and evaluate the application of co-design in the oncology literature and develop recommendations to guide the application of optimal co-design processes and reporting in oncology research, practice, and policy. METHODS: A systematic review of co-design studies in adults with cancer was conducted, searching MEDLINE, CINAHL, Embase, and PsycINFO databases and included studies focused on 2 concepts, co-design and oncology. RESULTS: A total of 5652 titles and abstracts were screened, resulting in 66 eligible publications reporting on 51 unique studies. Four frameworks were applied to describe the co-design initiatives. Most co-design initiatives were designed for use in an outpatient setting (n = 38; 74%) and were predominantly digital resources (n = 14; 27%) or apps (n = 12; 23%). Most studies (n = 25; 49%) used a co-production approach to consumer engagement. Although some studies presented strong co-design methodology, most (n = 36; 70%) did not report the co-design approach, and 14% used no framework. Reporting was poor for the participant level of involvement, the frequency, and time commitment of co-design sessions. Consumer participation level was predominantly collaborate (n = 25; 49%). CONCLUSIONS: There are opportunities to improve the application of co-design in oncology research. This review has generated recommendations to guide 1) methodology and frameworks, 2) recruitment and engagement of co-design participants, and 3) evaluation of the co-design process. These recommendations can help drive appropriate, meaningful, and equitable co-design, leading to better cancer research and care.


Subject(s)
Community Participation , Neoplasms , Humans , Neoplasms/therapy , Research Design , Medical Oncology , Patient Participation , Adult
3.
BMJ Open ; 14(4): e081084, 2024 Apr 22.
Article in English | MEDLINE | ID: mdl-38653511

ABSTRACT

INTRODUCTION: Cancer-related cognitive impairment is common among people diagnosed with and treated for cancer. This can be a distressing and disabling side effect for impacted individuals. Interventions to mitigate cognitive dysfunction are available, but, to date, most have been trialled in samples that are largely or exclusively composed of people with solid tumours. Intervention strategies to support cognitive functioning are needed, but there is a paucity of research in this area. The main aim of this study is to test the feasibility and acceptability of methods and procedures intended for use in a definitive trial of a web-based cognitive rehabilitation programme, Responding to Cognitive Concerns (eReCog), in people who have received chemotherapy for aggressive lymphoma. METHODS AND ANALYSIS: The proposed study is a single-site, parallel-group, pilot randomised controlled trial, with one baseline and one follow-up (or postintervention) assessment. 38 people from the target population with low perceived cognitive function based on the Cognitive Change Screen will be recruited from a specialist cancer centre between July 2023 and June 2024. After baseline assessment, participants will be randomised one-to-one to receive usual care only (a factsheet about changes in memory and thinking for people with cancer) or eReCog plus usual care. The 4-week eReCog intervention consists of four online modules offering psychoeducation on cognitive impairment associated with cancer and its treatment, skills training for improving memory, and attention and relaxation training. Study outcomes will include the feasibility of recruitment and retention at follow-up assessment (primary outcomes), as well as adherence to, usability of and intrinsic motivation to engage with eReCog, and compliance with study measures. The potential efficacy of eReCog will also be evaluated. ETHICS AND DISSEMINATION: Ethical approval was granted by the Peter MacCallum Cancer Centre Human Research Ethics Committee in Victoria, Australia (HREC/97384/PMCC). Study findings will be disseminated via peer-reviewed publications and conference presentations. TRIAL REGISTRATION NUMBER: Australian New Zealand Clinical Trials Registry, ACTRN12623000705684.


Subject(s)
Chemotherapy-Related Cognitive Impairment , Internet-Based Intervention , Lymphoma , Humans , Chemotherapy-Related Cognitive Impairment/rehabilitation , Cognitive Behavioral Therapy/methods , Cognitive Training , Feasibility Studies , Internet , Lymphoma/complications , Lymphoma/rehabilitation , Pilot Projects , Randomized Controlled Trials as Topic
4.
Article in English | MEDLINE | ID: mdl-38326015

ABSTRACT

AIM: The aim of the systematic review was to identify conceptual models and interventions designed to improve health literacy in caregivers of adults with a chronic disease/disability. METHODS: MEDLINE, CINAHL, PsycINFO and Embase were searched for relevant literature. Articles were included if they focused on adults who provided informal care to someone aged 18+ with a chronic disease/disability. Quantitative studies were included if they reported an intervention designed to improve caregiver health literacy (CHL) and assessed outcomes using a validated measure of health literacy. Qualitative and mixed method studies were included if they described a conceptual model or framework of CHL or developed/assessed the feasibility of an intervention. Study quality was appraised using the Mixed Methods Assessment Tool. RESULTS: Eleven studies were included. Five studies used pre-post design to assess outcomes of an intervention; four described intervention development and/or pilot testing; two described conceptual models. Two of five studies reported pre-post intervention improvements in CHL; one reported an improvement in one of nine health literacy domains; two reported no improvements following intervention. Interventions predominantly aimed to improve: caregiver understanding of the disease, treatment and potential outcomes, day-to-day care, self-care and health provider engagement. Few interventions targeted broader interpersonal and health service factors identified as influencing CHL. DISCUSSION: Evidence on the development and assessment of comprehensive CHL interventions is scarce. Recommendations include the development of interventions that are guided by a CHL framework to ensure they address individual, interpersonal and health service/provider factors that influence CHL.

5.
BMC Health Serv Res ; 24(1): 239, 2024 Feb 23.
Article in English | MEDLINE | ID: mdl-38395852

ABSTRACT

BACKGROUND: The incidence of pancreatic cancer is rising. With improvements in knowledge for screening and early detection, earlier detection of pancreatic cancer will continue to be more common. To support workforce planning, our aim is to perform a model-based analysis that simulates the potential impact on the healthcare workforce, assuming an earlier diagnosis of pancreatic cancer. METHODS: We developed a simulation model to estimate the demand (i.e. new cases of pancreatic cancer) and supply (i.e. the healthcare workforce including general surgeons, medical oncologists, radiation oncologists, pain medicine physicians, and palliative care physicians) between 2023 and 2027 in Victoria, Australia. The model compares the current scenario to one in which pancreatic cancer is diagnosed at an earlier stage. The incidence of pancreatic cancer in Victoria, five-year survival rates, and Victoria's population size were obtained from Victorian Cancer Registry, Cancer Council NSW, and Australian Bureau of Statistics respectively. The healthcare workforce data were sourced from the Australian Government Department of Health and Aged Care's Health Workforce Data. The model was constructed at the remoteness level. We analysed the new cases and the number of healthcare workforce by profession together to assess the impact on the healthcare workforce. RESULTS: In the status quo, over the next five years, there will be 198 to 220 stages I-II, 297 to 330 stage III, and 495 to 550 stage IV pancreatic cancer cases diagnosed annually, respectively. Assuming 20-70% of the shift towards pancreatic cancer's earlier diagnosis (shifting from stage IV to stages I-II pancreatic cancer within one year), the stages I-II cases could increase to 351 to 390 or 598 to 665 per year. The shift to early diagnosis led to substantial survival gains, translating into an additional 284 or 795 out of 5246 patients with pancreatic cancer remaining alive up to year 5 post-diagnosis. Workforce supply decreases significantly by the remoteness levels, and remote areas face a shortage of key medical professionals registered in delivering pancreatic cancer care, suggesting travel necessities by patients or clinicians. CONCLUSION: Improving the early detection and diagnosis of pancreatic cancer is expected to bring significant survival benefits, although there are workforce distribution imbalances in Victoria that may affect the ability to achieve the anticipated survival gain.


Subject(s)
Pancreatic Neoplasms , Physicians , Humans , Aged , Victoria/epidemiology , Workforce , Health Workforce , Pancreatic Neoplasms/diagnosis , Pancreatic Neoplasms/epidemiology , Pancreatic Neoplasms/therapy
6.
BMC Cancer ; 24(1): 144, 2024 Jan 29.
Article in English | MEDLINE | ID: mdl-38287317

ABSTRACT

BACKGROUND: Up to 70% of people diagnosed with upper gastrointestinal (GI) tract or hepato-pancreato-biliary (HPB) cancers experience substantial reductions in quality of life (QoL), including high distress levels, pain, fatigue, sleep disturbances, weight loss and difficulty swallowing. With few advocacy groups and support systems for adults with upper GI or HPB cancers (i.e. pancreas, liver, stomach, bile duct and oesophageal) and their carers, online supportive care programs may represent an alternate cost-effective mechanism to support this patient group and carers. iCare is a self-directed, interactive, online program that provides information, resources, and psychological packages to patients and their carers from the treatment phase of their condition. The inception and development of iCare has been driven by consumers, advocacy groups, government and health professionals. The aims of this study are to determine the feasibility and acceptability of iCare, examine preliminary efficacy on health-related QoL and carer burden at 3- and 6-months post enrolment, and the potential cost-effectiveness of iCare, from health and societal perspectives, for both patients and carers. METHODS AND ANALYSIS: A Phase II randomised controlled trial. Overall, 162 people with newly diagnosed upper GI or HPB cancers and 162 carers will be recruited via the Upper GI Cancer Registry, online advertisements, or hospital clinics. Patients and carers will be randomly allocated (1:1) to the iCare program or usual care. Participant assessments will be at enrolment, 3- and 6-months later. The primary outcomes are i) feasibility, measured by eligibility, recruitment, response and attrition rates, and ii) acceptability, measured by engagement with iCare (frequency of logins, time spent using iCare, and use of features over the intervention period). Secondary outcomes are patient changes in QoL and unmet needs, and carer burden, unmet needs and QoL. Linear mixed models will be fitted to obtain preliminary estimates of efficacy and variability for secondary outcomes. The economic analysis will include a cost-consequences analysis where all outcomes will be compared with costs. DISCUSSION: iCare provides a potential model of supportive care to improve QoL, unmet needs and burden of disease among people living with upper GI or HPB cancers and their carers. AUSTRALIAN AND NEW ZEALAND CLINICAL TRIALS REGISTRY: ACTRN12623001185651. This protocol reflects Version #1 26 April 2023.


Subject(s)
Neoplasms , Upper Gastrointestinal Tract , Adult , Humans , Quality of Life/psychology , Caregivers/psychology , Australia , Neoplasms/therapy , Randomized Controlled Trials as Topic , Clinical Trials, Phase II as Topic
7.
Syst Rev ; 12(1): 116, 2023 07 07.
Article in English | MEDLINE | ID: mdl-37420258

ABSTRACT

Consolidation of the literature using systematic reviews is a critical way to advance a discipline and support evidence-based decision-making in healthcare. However, unique challenges exist that impact the conduct of systematic reviews in implementation science. In this commentary, we reflect on our combined experience to describe five key challenges unique to systematic reviews of primary implementation research. These challenges include (1) descriptors used in implementation science publications, (2) distinction between evidence-based interventions and implementation strategies, (3) assessment of external validity, (4) synthesis of implementation studies with substantial clinical and methodological diversity, and (5) variability in defining implementation 'success'. We outline possible solutions and highlight resources that can be used by authors of primary implementation research, as well as systematic review and editorial teams, to overcome the identified challenges and optimise the utility of future systematic reviews in implementation science.


Subject(s)
Implementation Science , Research Design , Humans , Systematic Reviews as Topic
8.
Psychooncology ; 32(8): 1257-1267, 2023 08.
Article in English | MEDLINE | ID: mdl-37430441

ABSTRACT

BACKGROUND: Caregivers play an important role supporting people diagnosed with cancer, yet report significant unmet information and support needs that impact on their psychological wellbeing. Health literacy and social connectedness are key factors that influence wellbeing, yet few studies have examined their relative role in psychological wellbeing of carers. This study investigated relationships between caregiver and care recipient health literacy, social support, and social connectedness on psychological morbidity in a cancer setting. METHODS: This cross-sectional study included 125 caregiver-cancer care recipient dyads. Participants completed the Health Literacy Survey-EU-Q16, Social Connectedness Scale-Revised, the Medical Outcomes Study-Social Support Survey, and the Depression, Anxiety and Stress Scale-21 (DASS21). Relationships between factors were examined using hierarchical multiple regression with care recipient factors entered at Step 1 and caregiver factors at Step 2. RESULTS: Most caregivers provided care for their spouse (69.6%); caregivers mean total DASS21 score was 24.38 (SD = 22.48). Mean DASS21 subscale scores for depression, anxiety, stress in caregivers were 4.02 (SD = 4.07), 2.7 (SD = 3.64), and 5.48 (SD = 4.24) respectively, suggesting normal range of depression and stress, and mild anxiety. Care recipients had a diagnosis of breast (46.4%), gastrointestinal (32.8%), lung (13.6%), or genitourinary (7.2%) cancer, and a mean DASS21 score of 31.95 (SD = 20.99). Mean DASS21 subscale scores for depression, anxiety, stress in care recipients were 5.10 (SD = 4.18), 4.26 (SD = 3.65), and 6.62 (SD = 3.99) respectively, suggesting mild depression and anxiety, and normal stress scores. Regression analyses showed that only caregiver factors (age, illness/disability, health literacy and social connectedness) were independent predictors of caregiver psychological morbidity (F [10,114] = 18.07, p < 0.001). CONCLUSION(S): Only caregiver, and not care recipient, factors were found to influence caregiver psychological morbidity. While both health literacy and social connectedness influenced caregiver psychological morbidity, perceived social connectedness had the strongest influence. Interventions that ensure caregivers have adequate health literacy skills, as well as understand the value of social connection when providing care, and are supported to develop skills to seek support, have the potential to promote optimal psychological wellbeing in cancer caregivers.


Subject(s)
Caregivers , Health Literacy , Humans , Caregivers/psychology , Cross-Sectional Studies , Social Support , Morbidity , Depression/psychology , Stress, Psychological
9.
J Clin Nurs ; 32(19-20): 6773-6795, 2023 Oct.
Article in English | MEDLINE | ID: mdl-37272211

ABSTRACT

AIM: To synthesise evidence about informal carers' (carers) experience of their support needs, facilitators and barriers regarding transitional care of older adults with multimorbidity. BACKGROUND: Carers provide crucial support for older adults during care transitions. Although health practitioners are well positioned to support carers, system factors including limited healthcare resources can compromise the quality of care transitions. DESIGN: Scoping review. METHODS: Searches were undertaken of the published literature. Five databases were searched including MEDLINE, CINAHL, EMBASE, PsycINFO and the Cochrane Library. Two reviewers independently screened articles to identify relevant studies. Studies were retrieved from January 2000 to July 2022. Data were extracted and tabulated for study characteristics, support needs, facilitators and barriers. Key themes and patterns were synthesised across the studies. RESULTS: Eighteen studies including N = 3174 participants were retrieved. Most studies (n = 13) employed qualitative designs. Five studies used surveys. Carers reported their need to: be involved in coordinated discharge planning; advocate and be involved in decision-making; and receive community-based follow-up. Carers described facilitators and barriers in four themes: (1) relationships with the older adult and health practitioners, (2) being involved in coordinated discharge planning; (3) communication and information strategies; and (4) community-based follow-up. Synthesis of themes across all studies resulted in the identification of five areas of research: carers' health literacy; community-based care; carers' involvement in transitional care planning; inpatient and community health practitioners' communication skills; and culturally diverse carers' experiences. CONCLUSION AND RELEVANCE TO CLINICAL PRACTICE: The review highlights the importance of quality communication and relationships between carers, older adults, health practitioners and health organisations. Although information and education are important there is a need for further research to examine systems that support communication between carers, older adults and health practitioners and health literacy for all carers including culturally diverse carers.


Subject(s)
Caregivers , Transitional Care , Aged , Humans , Hospital to Home Transition , Hospitals , Inpatients
10.
Front Public Health ; 11: 1027667, 2023.
Article in English | MEDLINE | ID: mdl-37304084

ABSTRACT

Background: Existing research has demonstrated the potential of mHealth apps in improving the caregiving outcomes of stroke. Since most of the apps were published in commercially available app stores without explaining their design and evaluation processes, it is necessary to identify the user experience issues to promote long-term adherence and usage. Objective: The purpose of this study was to utilize published user reviews of commercially available apps to determine the user experience issues to guide future app development in stroke caregiving. Methods: User reviews were extracted from the previously identified 46 apps that support stroke caregiving needs using a python-scraper. The reviews were pre-processed and filtered using python scripts to consider English reviews that described issues faced by the user. The final corpus was categorized based on TF-IDF vectorization and k-means clustering technique, and the issues extracted from the various topics were classified based on the seven dimensions of user experience to highlight factors that may affect the usage of the app. Results: A total of 117,364 were extracted from the two app stores. After filtration, 13,368 reviews were included and classified based on the user experience dimensions. Findings highlight critical issues that affect the usability, usefulness, desirability, findability, accessibility, credibility, and value of the app that contribute to decreased satisfaction and increased frustration. Conclusion: The study identified several user experience issues due to the inability of the app developers to understand the needs of the user. Further, the study describes the inclusion of a participatory design approach to promote an improved understanding of user needs; therefore, limiting any issues and ensuring continued use.


Subject(s)
Stroke , Telemedicine , Humans , Caregivers , Cluster Analysis , Stroke/therapy
11.
Article in English | MEDLINE | ID: mdl-37263759

ABSTRACT

PURPOSE: The objective of this study was to summarise the literature on current interventions available for carers of men with prostate cancer and analyse the outcomes of these interventions in supporting carers' needs. METHODS: A systematic review was conducted, searching databases MEDLINE, PsycINFO, CINAHL, Scopus and Cochrane, using terms related to prostate cancer, carers and interventions. Randomised controlled trials and non-randomised controlled trials of interventions for informal carers with or without patients were included. Data were analysed using descriptive and frequency statistics; interventions and their impact on carers' outcomes were reported on narratively. The SwiM guidelines were applied to guide data synthesis. RESULTS: Overall, 24 articles were included in the review. On average, participants were spouses (92%) and women (97%). Interventions largely rwere delivered face-to-face (42%) or used a combination of face to face and online modalities (38%). Two-thirds (63%) showed a significant improvement in carer's outcomes including psychological, sexual, physical and relationship/marital. The majority of studies (79%) tailored contents to carers' circumstances, most within a couples counselling format. Over one-third (42%) of studies focused on a range of supportive care needs, most commonly were psychological (58%), sexual (42%) and informational (25%). CONCLUSIONS: Interventions for carers of men with prostate cancer were largely face to face, patient-spouse focused and two-thirds had some measurable impact on carer's outcomes. Research continues to underserve other patient-carer roles, including non-spousal carers. Interventions delivered solely for carers are required to meet gaps in care, and determine the impact on carer outcomes. Further research and more targeted interventions are needed. PROSPERO REGISTRATION NUMBER: CRD42021249870.

12.
Article in English | MEDLINE | ID: mdl-36746609

ABSTRACT

OBJECTIVES: Caregivers play a key role in providing support to people with cancer. However, caregiving can be stressful and demanding, resulting in perceived caregiver burden. Social connectedness is considered partially independent from social support, yet few studies have examined whether social connectedness impacts caregiver burden. The current study sought to examine: (a) associations among social support, social connectedness and burden in a sample of cancer caregivers and (b) the mediating effect of social connectedness on the relationship between social support and caregiver burden. METHODS: A descriptive cross-sectional study was conducted. Data were collected as part of a larger project. The sample included 125 caregiver-cancer care recipient dyads. Caregivers completed the Social Connectedness Scale-Revised, the Medical Outcomes Study-Social Support Survey and the Zarit Burden Interview. Descriptive statistics, hierarchical multiple regression and mediation analyses were used to examine relationships between variables. RESULTS: Correlation analyses showed higher perceived social support and social connectedness were significantly correlated with lower-reported caregiver burden (p<0.05). The hierarchical regression model showed that both social support and social connectedness were independent predictors of caregiver burden (p<0.001). Social connectedness partially mediated the relationship between social support and caregiver burden. CONCLUSIONS: This study provides new evidence that social support buffers the negative effects of burden in caregivers, suggesting these are potentially modifiable factors of caregiver burden. Increased understanding of the factors that contribute to burden among cancer caregivers will inform targeted supportive care strategies to improve psychological health and well-being in this underserved group.

13.
PLoS One ; 18(1): e0281198, 2023.
Article in English | MEDLINE | ID: mdl-36719929

ABSTRACT

BACKGROUND: Globally, stroke is a leading cause of death and disability, with most care undertaken by caregivers who are generally family and friends without prior experience of care. The lack of experience or unpreparedness results in feelings of uncertainty, burnout, anxiety, burden, etc. Hence, it is necessary to identify the needs of caregivers to better support them in their caregiving journey and improve the quality of care delivered. METHODS: The study employed a grounded theory methodology that utilizes information gathered from literature reviews and social media to represent the needs and create a storyline visually. The storyline is further refined and evaluated using an online survey of 72 participants recruited through online stroke caregiving communities. RESULTS: The study identified four core categories of needs: (i) Information: sufficient information delivered in layman's terms based on the individual situation of the caregiver and survivor through oral and hands-on demonstrations, (ii) Involvement: inclusion in the decision-making processes at different stages of recovery through face-to-face communication at the hospital, (iii) Self-care: ability to engage in work and leisure activities, (iv) Support: receive support in the form of resources, services and finances from different other stakeholders. CONCLUSIONS: There is a need to create a caregiver-centered approach in stroke recovery to ensure limited obstruction to care and reduced uncertainty in stroke recovery. Moreover, through the inclusion of caregivers in stroke recovery, it may be possible to reduce the burden of care to the caregiver and ensure the satisfaction of the healthcare system throughout stroke recovery.


Subject(s)
Disabled Persons , Stroke , Humans , Caregivers , Self Care , Grounded Theory , Stroke/therapy
14.
Health Expect ; 25(6): 2876-2892, 2022 12.
Article in English | MEDLINE | ID: mdl-36069335

ABSTRACT

INTRODUCTION: Inclusion of informal carers in transitional care is challenging because of fast throughput and service fragmentation. This study aimed to understand informal carers' needs during the care transitions of older adults from inpatient care to the community. METHODS: A qualitative exploratory design was used with mixed-methods data collection. Seventeen semi-structured telephone interviews were conducted with family carers; one focus group was conducted by videoconference with two family carers and three community-based advocacy and aged care providers; and eight semi-structured telephone interviews were undertaken with healthcare practitioners from rehabilitation services. Data were thematically analysed. FINDINGS: All carers described the main social challenge that they needed to address in transitional care as 'Needing to sustain family'. Carers reported their social needs across five solutions: 'Partnering with carers', 'Advocating for discharge', 'Accessing streamlined multidisciplinary care', 'Knowing how to care' and 'Accessing follow-up care in the community'. Focus group participants endorsed the findings from the carer interviews and added the theme 'Putting responsibility back onto carers'. All healthcare practitioners described the main social challenge that they needed to address as 'Needing to engage carers'. They reported their social solutions in three themes: 'Communicating with carers', 'Planning with carers' and 'Educating carers'. DISCUSSION: Findings highlight the importance of reconstructing the meaning of transitional care and relevant outcomes to be inclusive of carers' experiences and their focus on sustaining family. Transitional care that includes carers should commence at the time of hospital admission of the older adult. CONCLUSIONS: Future sustainable and high-quality health services for older adults will require transitional care that includes carers and older adults and efficient use of inpatient and community care resources. Healthcare professionals will require education and skills in the provision of transitional care that includes carers. To meet carers' support needs, models of transitional care inclusive of carers and older adults should be developed, implemented and evaluated. PUBLIC CONTRIBUTION: This study was conducted with the guidance of a Carer Advisory Group comprising informal carers with experience of care transitions of older adults they support and community-based organizations providing care and advocacy support to informal carers.


Subject(s)
Caregivers , Transitional Care , Humans , Aged , Qualitative Research , Health Personnel , Focus Groups
15.
BMJ Open ; 12(6): e060189, 2022 06 24.
Article in English | MEDLINE | ID: mdl-35750461

ABSTRACT

OBJECTIVES: The aim of this preplanned secondary analysis of a 12-month randomised controlled trial was to investigate the effects of a multicomponent exercise programme combined with daily whey protein, calcium and vitamin D supplementation on cognition in men with prostate cancer treated with androgen deprivation therapy (ADT). DESIGN: 12-month, two-arm, randomised controlled trial. SETTING: University clinical exercise centre. PARTICIPANTS: 70 ADT-treated men were randomised to exercise-training plus supplementation (Ex+ Suppl, n=34) or usual care (control, n=36). INTERVENTION: Men allocated to Ex + Suppl undertook thrice weekly resistance training with weight-bearing exercise training plus daily whey protein (25 g), calcium (1200 mg) and vitamin D (2000 IU) supplementation. PRIMARY AND SECONDARY OUTCOME MEASURES: Cognition was assessed at baseline, 6 and 12 months via a computerised battery (CogState), Trail-making test, Rey auditory-verbal learning test and Digit span. Data were analysed with linear mixed models and an intention-to-treat and prespecified per-protocol approach (exercise-training: ≥66%, nutritional supplement: ≥80%). RESULTS: Sixty (86%) men completed the trial (Ex + Suppl, n=31; control, n=29). Five (7.1%) men were classified as having mild cognitive impairment at baseline. Median (IQR) adherence to the exercise and supplement was 56% (37%-82%) and 91% (66%-97%), respectively. Ex + Suppl had no effect on cognition at any time. CONCLUSIONS: A 12-month multicomponent exercise training and supplementation intervention had no significant effect on cognition in men treated with ADT for prostate cancer compared with usual care. Exercise training adherence below recommended guidelines does not support cognitive health in men treated with ADT for prostate cancer. TRIAL REGISTRATION NUMBER: Australian and New Zealand Clinical Trial Registry (ACTRN12614000317695, registered 25/03/2014) and acknowledged under the Therapeutic Goods Administration Clinical Trial Notification Scheme (CT-2015-CTN-03372-1 v1).


Subject(s)
Androgen Antagonists , Prostatic Neoplasms , Androgen Antagonists/therapeutic use , Australia , Calcium , Cognition , Dietary Supplements , Exercise , Exercise Therapy/methods , Humans , Male , Prostatic Neoplasms/drug therapy , Proteins/therapeutic use , Quality of Life , Vitamin D/pharmacology , Vitamin D/therapeutic use , Vitamins/therapeutic use , Whey Proteins/pharmacology , Whey Proteins/therapeutic use
16.
Health Soc Care Community ; 30(6): e4223-e4238, 2022 11.
Article in English | MEDLINE | ID: mdl-35507732

ABSTRACT

This study aimed to develop and evaluate a communication tool to guide transitional care for older patients. Using experience-based co-design, a communication tool resulted from the triangulation of data collected from three study phases. From 2015 to 2016, semi-structured interviews and co-design focus groups were undertaken with older patients, carers and healthcare practitioners across acute, rehabilitation and community settings. The evaluation phase, conducted in 2017-2018, involved use of the communication tool by healthcare practitioners in a multidisciplinary care team with older patients in acute care and semi-structured interviews with healthcare practitioners about the acceptability and feasibility of the tool. A total of 103 patients, carers and healthcare practitioners took part. In semi-structured interviews, patients and carers reported needing to become independent in care transitions, which was supported by discussing the transitional care plan with healthcare practitioners. Interviews with healthcare practitioners identified that their need for fast and safe care transitions was supported by team discussion and by engaging patients and carers in their transitional care plan. Co-design focus group participants identified principles guiding transitional care including patient-centred communication. Data collected from semi-structured interviews and co-design focus groups were used to develop a prototype communication tool to guide conversations about discharge care between healthcare practitioners and older patients. Following use, healthcare practitioners reported that the communication tool was feasible and acceptable although some nurses perceived that transitional care was not their role. The communication tool provides an evidence-based resource for ward nurses to support transitional care continuity in multidisciplinary models.


Subject(s)
Hospital to Home Transition , Transitional Care , Humans , Australia , Communication , Caregivers
17.
J Med Imaging Radiat Oncol ; 66(6): 874-880, 2022 Sep.
Article in English | MEDLINE | ID: mdl-35590470

ABSTRACT

INTRODUCTION: COVID-19 has impacted lives worldwide. Public health guidance has advocated for minimisation of infection risk by encouraging social isolation and physical distancing. In response, many health services have changed delivery practices to increased use of telehealth. We undertook an audit of hospital attendance data collected from a radiation oncology service in a large public hospital in Victoria, Australia between January and September in 2019, and the same period in 2020. The aim was to discern the impact of COVID-19 on attendance at appointments and whether attendance rates differed by appointment type. METHODS: Attendance data and appointment type for the two targeted periods (a total of 62,528 appointments for 3383 patients) were extracted from the database maintained by the radiation oncology service. Logistic generalised estimating equation (GEE) models were run with the final model including the COVID-19 period (pre, during) and all patient and appointment characteristics. RESULTS: Results indicated a small decrease in attendance in 2020 (OR = 1.13, 95% CI 1.01-1.25, P = 0.026) with this predominantly reported for the non-treatment appointments, which consisted of follow-up appointments, nurse appointments, and treatment review appointments. CONCLUSION: Attendance for radiation oncology treatment was largely unaffected by COVID-19 although other services experienced slight reductions. Changes to work practices, specifically the increased use of telehealth, may have moderated the impact. Given the focus on one service in one location, it is not possible to generalise these results and future research should closely monitor both patient and staff satisfaction with services delivered via modified processes.


Subject(s)
COVID-19 , Radiation Oncology , Appointments and Schedules , Hospitals, Public , Humans , Victoria/epidemiology
18.
Digit Health ; 8: 20552076221089070, 2022.
Article in English | MEDLINE | ID: mdl-35371533

ABSTRACT

Background: Caregiving in stroke is complex, with most carers having little to no preparation to care for individuals with a history of stroke, leading to emotional impact. Technologies such as Mobile Health can provide the carer with real-time support and prepare the carer to assume their new roles and responsibilities. Objectives: To perform a heuristic evaluation of mHealth interventions designed to support carers of individuals with a history of stroke and determine the user preferences in stroke caregiving technology to inform future researchers and developers regarding the best practices to support these individuals. Methods: Twenty adults (i.e. 10 usability experts and 10 carers) participated in an iterative user-centred design study that focused on developing and modifying the mHealth intervention (StrokeCaregiver (SeCr)) created to support stroke caregiving. The intervention was repeated in four cycles, including two cycles with five usability experts each and five carers each. Results: SeCr was iteratively improved to develop a highly usable product in multiple cycles. Participants demonstrated critical needs in personalized information support, communication with their healthcare needs, and the trust of the user, content, and developer. These critical needs are required to be met to promote long-term acceptance and adherence. Conclusions: While SeCr was developed to address the needs of carers of individuals with a history of stroke, several considerations must be made to ensure it can be used in a real-world setting. Researchers and developers can use co-design or living lab approaches to further meet the needs and expectations of the carer and enable these individuals to be better prepared for stroke caregiving.

19.
BMJ Open ; 12(1): e057212, 2022 Jan 12.
Article in English | MEDLINE | ID: mdl-35022179

ABSTRACT

INTRODUCTION: Fear of cancer recurrence (FCR) is a common condition among cancer survivors that can lead to significant levels of distress, anxiety and depression. Online mindfulness programmes may provide the mechanism to support cancer survivors manage FCR and distress, and improve people's well-being over the short, medium and long term. The primary aim of this study is to determine the potential efficacy of MindOnLine, a 9 session mindfulness-based programme for survivors of breast, prostate and colorectal cancer. A formal economic programme will also be conducted. METHODS AND ANALYSIS: A single-blind randomised controlled trial to determine the efficacy and cost-efficacy of a MindOnLine programme for cancer survivors. A total of 400 people living with cancer will be recruited via online advertisements on social media platforms, peak consumer advocacy groups or through outpatient services at healthcare providers across Victoria, Australia. People will be randomly allocated to either the MindOnLine programme (n=200) or waitlist control (n=200). Participant assessments will occur at baseline, at 9 weeks and 9-month follow-up. The primary outcome is change in Fear of Recurrence Index Score total score between baseline and 9 weeks; secondary outcomes are changes in depression and anxiety, quality of life and mindfulness. The economic analysis comprises a cost-consequences analysis where all outcomes will be compared with costs. ETHICS AND DISSEMINATION: Ethics approval was obtained from the Peter MacCallum Cancer Centre (20-53) and Deakin University (2020-284). All participants will be required to provide written informed consent. Findings will be disseminated in peer reviewed journals and among key stakeholder organisations including hospitals, cancer and community organisations and Government. If successful the project will be rolled out nationally with a formal implementation plan. TRIAL REGISTRATION NUMBER: Australian New Zealand Clinical Trials Registry (12620000645954); Pre-results. Registered 6 June 2020, https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=379520&isReview=true.


Subject(s)
Mindfulness , Neoplasms , Cost-Benefit Analysis , Fear , Humans , Male , Neoplasms/therapy , Quality of Life , Randomized Controlled Trials as Topic , Single-Blind Method , Victoria
20.
PLoS One ; 17(1): e0262919, 2022.
Article in English | MEDLINE | ID: mdl-35081150

ABSTRACT

BACKGROUND: Caregivers often use the internet to access information related to stroke care to improve preparedness, thereby reducing uncertainty and enhancing the quality of care. METHOD: Social media communities used by caregivers of people affected by stroke were identified using popular keywords searched for using Google. Communities were filtered based on their ability to provide support to caregivers. Data from the included communities were extracted and analysed to determine the content and level of interaction. RESULTS: There was a significant rise in the use of social media by caregivers of people affected by stroke. The most popular social media communities were charitable and governmental organizations with the highest user interaction-this was for topics related to stroke prevention, signs and symptoms, and caregiver self-care delivered through video-based resources. CONCLUSION: Findings show the ability of social media to support stroke caregiver needs and practices that should be considered to increase their interaction and support.


Subject(s)
Caregivers , Quality of Life , Social Media , Social Support , Stroke Rehabilitation , Stroke , Humans
SELECTION OF CITATIONS
SEARCH DETAIL
...