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1.
CA Cancer J Clin ; 72(3): 266-286, 2022 05.
Artigo em Inglês | MEDLINE | ID: mdl-34797562

RESUMO

Smoking cessation reduces the risk of death, improves recovery, and reduces the risk of hospital readmission. Evidence and policy support hospital admission as an ideal time to deliver smoking-cessation interventions. However, this is not well implemented in practice. In this systematic review, the authors summarize the literature on smoking-cessation implementation strategies and evaluate their success to guide the implementation of best-practice smoking interventions into hospital settings. The CINAHL Complete, Embase, MEDLINE Complete, and PsycInfo databases were searched using terms associated with the following topics: smoking cessation, hospitals, and implementation. In total, 14,287 original records were identified and screened, resulting in 63 eligible articles from 56 studies. Data were extracted on the study characteristics, implementation strategies, and implementation outcomes. Implementation outcomes were guided by Proctor and colleagues' framework and included acceptability, adoption, appropriateness, cost, feasibility, fidelity, penetration, and sustainability. The findings demonstrate that studies predominantly focused on the training of staff to achieve implementation. Brief implementation approaches using a small number of implementation strategies were less successful and poorly sustained compared with well resourced and multicomponent approaches. Although brief implementation approaches may be viewed as advantageous because they are less resource-intensive, their capacity to change practice in a sustained way lacks evidence. Attempts to change clinician behavior or introduce new models of care are challenging in a short time frame, and implementation efforts should be designed for long-term success. There is a need to embrace strategic, well planned implementation approaches to embed smoking-cessation interventions into hospitals and to reap and sustain the benefits for people who smoke.


Assuntos
Abandono do Hábito de Fumar , Hospitais , Humanos , Abandono do Hábito de Fumar/métodos
2.
BMC Cancer ; 24(1): 144, 2024 Jan 29.
Artigo em Inglês | MEDLINE | ID: mdl-38287317

RESUMO

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.


Assuntos
Neoplasias , Trato Gastrointestinal Superior , Adulto , Humanos , Qualidade de Vida/psicologia , Cuidadores/psicologia , Austrália , Neoplasias/terapia , Ensaios Clínicos Controlados Aleatórios como Assunto , Ensaios Clínicos Fase II como Assunto
3.
BMC Public Health ; 24(1): 1649, 2024 Jun 20.
Artigo em Inglês | MEDLINE | ID: mdl-38902694

RESUMO

BACKGROUND: People living with cancer, or carers who are from lesbian, gay, bisexual, transgender, queer, intersex or asexual (LGBTQIA+) communities experience unique information and support needs. Accessible technology-based resources providing tailored support are required to promote wellbeing, however this is a growing area of research requiring further investigation. The purpose of this study was to explore the experiences of healthcare services among people living with cancer, and their carers, who belong to sexual or gender diverse communities (LGBTQIA+), and identify how smartphone applications (apps) could support people from LGBTQIA + communities. METHODS: This was a qualitative descriptive study where people living with cancer or carers from LGBTQIA + communities participated in phone interviews. Participants were recruited across Australia via social media advertisements, LGBTQIA + medical practices, and cancer advocacy groups. Participants were asked questions about their experiences, and were provided with screenshots of an existing app and asked to provide feedback on content and inclusiveness. Transcripts were coded and codes grouped together to form similar and concepts. Inductive and deductive analyses were used to create themes. RESULTS: 13 patients (mean age 56 (SD:13)), and three carers (mean age 64 (SD:19)) completed phone interviews. The majority of participants identified their gender as female (patients n = 9, carers 3), and their sexuality as gay or lesbian (patients n = 10, carers n = 3). Four themes were created: (1) navigating disclosure in healthcare, described emotional challenges surrounding disclosure; (2) the power of positive experiences with clinicians, described positive interactions and gaps in care from clinicians; (3) impact of gender and sexuality on informal support, outlined support received from informal network and gaps in support, and; (4) opportunities to increase inclusivity in smartphone apps, generated ideas on how apps can be tailored to meet needs identified. CONCLUSION: Disclosure of gender or sexuality, and interactions with clinicians had the potential to impact participants' experience of cancer care. Gaps in informal networks pointed at how to better support LGBTQIA + communities, and identified opportunities for inclusion in an app that will be tailored and trialled for this community. Future work should focus on addressing systems-level processes in acknowledging and supporting priority groups affected by cancer.


Assuntos
Cuidadores , Aplicativos Móveis , Neoplasias , Pesquisa Qualitativa , Minorias Sexuais e de Gênero , Smartphone , Humanos , Feminino , Masculino , Pessoa de Meia-Idade , Neoplasias/psicologia , Minorias Sexuais e de Gênero/psicologia , Cuidadores/psicologia , Adulto , Idoso , Austrália , Entrevistas como Assunto
4.
BMC Health Serv Res ; 24(1): 239, 2024 Feb 23.
Artigo em Inglês | MEDLINE | ID: mdl-38395852

RESUMO

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.


Assuntos
Neoplasias Pancreáticas , Médicos , Humanos , Idoso , Vitória/epidemiologia , Recursos Humanos , Mão de Obra em Saúde , Neoplasias Pancreáticas/diagnóstico , Neoplasias Pancreáticas/epidemiologia , Neoplasias Pancreáticas/terapia
5.
Health Res Policy Syst ; 22(1): 105, 2024 Aug 13.
Artigo em Inglês | MEDLINE | ID: mdl-39135114

RESUMO

BACKGROUND: It is vital that health service delivery and health interventions address patients' needs or preferences, are relevant for practice and can be implemented. Involving those who will use or deliver healthcare in priority-setting can lead to health service delivery and research that is more meaningful and impactful. This is particularly crucial in rural communities, where limited resources and disparities in healthcare and health outcomes are often more pronounced. The aim of this study was to determine the health and healthcare priorities in rural communities using a region-wide community engagement approach. METHODS: This multi-methods study was conducted in five rural communities in the Grampians region, Western Victoria, Australia. It involved six concept mapping steps: (1) preparation, (2) generation (brainstorming statements and identifying rating criteria), (3) structuring statements (sorting and rating statements), (4) representation of statements, (5) interpretation of the concept map and (6) utilization. Community forums, surveys and stakeholder consultations with community members and health professionals were used in Step 2. An innovative online group concept mapping platform, involving consumers, health professionals and researchers was used in Step 3. RESULTS: Overall, 117 community members and 70 health professionals identified 400 health and healthcare issues. Six stakeholder consultation sessions (with 16 community members and 16 health professionals) identified three key values for prioritizing health issues: equal access for equal need, effectiveness and impact (number of people affected). Actionable priorities for healthcare delivery were largely related to access issues, such as the challenges navigating the healthcare system, particularly for people with mental health issues; the lack of sufficient general practitioners and other health providers; the high travel costs; and poor internet coverage often impacting technology-based interventions for people in rural areas. CONCLUSIONS: This study identified actionable health and healthcare priorities from the perspective of healthcare service users and providers in rural communities in Western Victoria. Issues related to access, such as the inequities in healthcare costs, the perceived lack of quality and availability of services, particularly in mental health and disability, were identified as priorities. These insights can guide future research, policy-making and resource allocation efforts to improve healthcare access, quality and equity in rural communities.


Assuntos
Pessoal de Saúde , Prioridades em Saúde , População Rural , Humanos , Vitória , Feminino , Masculino , Serviços de Saúde Rural/organização & administração , Atenção à Saúde , Participação da Comunidade , Adulto , Pesquisadores , Pessoa de Meia-Idade , Participação dos Interessados , Acessibilidade aos Serviços de Saúde , Idoso , Pesquisa sobre Serviços de Saúde
6.
Qual Life Res ; 32(11): 3109-3121, 2023 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-37356076

RESUMO

PURPOSE: Identify aspects of quality of life (QoL) important to Australian informal carers and explore how well the Adult Social Care Outcomes Toolkit for Carers, Care-related Quality of Life instrument and Carer Experience Scale capture these aspects in the Australian context. METHODS: Online questionnaires were completed by Australian informal carers. Socio-demographics, open-ended questions: positive/negative aspects of caring and QoL aspects missing from the instruments, and ranking of the instrument domains was used to explore the content of the instruments. Instruments were scored using preference-weighted value sets (reported in another paper). Content analysis was used to analyse the open-ended responses. Chi-squared test looked at differences in domain importance. Descriptive analyses summarised all other information. RESULTS: Eight themes were identified: Behaviour-mood of the care recipient, Caring responsibilities, Finances, Health, Own life, Perception of carers, Relationship with care recipient and Support. Many aspects of carer QoL mentioned as missing in the instruments appeared covered by the domains, of which all were reported as important. The highest ranked domain was relationship with the care recipient. The influence of the care recipient specific support, behaviour/mood and health on carer QoL appear absent in all instruments. CONCLUSION: The content of the three instruments appears relevant in an Australian setting. The influence of care recipient's health and well-being on carer QoL should be considered, along with spillover effects. A content and/or face validity analysis is required to confirm differences in item interpretation in Australian informal carers.


Assuntos
Cuidadores , Qualidade de Vida , Humanos , Adulto , Qualidade de Vida/psicologia , Austrália , Apoio Social , Inquéritos e Questionários
7.
J Paediatr Child Health ; 59(10): 1135-1139, 2023 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-37522319

RESUMO

AIM: The aim of this study is to understand the exposure to second-hand tobacco smoke in the homes of hospitalised children through: (i) understanding the prevalence of smoking in adults or carers and (ii) examining the health services' approach to identifying parental smoking status. METHODS: This prospective observational study consisted of two surveys: one administered to parents/carers of hospitalised children and one to health services. The first cross-sectional survey aimed to elicit the proportion of children requiring admission to a regional Victorian general paediatric unit who live with adults who smoke cigarettes. The survey was delivered to participating parents/carers during the standard nursing admission process. The second survey was administered across 15 public health services to determine if identification of parent/carer's smoking status is a routine part of their standard paediatric admission practice. RESULTS: For the parental survey, 453 responses were obtained from 782 consecutive new admissions. Nearly a third (n = 136, 30%) requiring hospital admission were found to be living with at least one parent/carer who identified as a current cigarette smoker. Of the 15 health services surveyed, only four (27%) nursing units reported routinely asking parents/carers about their smoking status as part of their standard admission process. CONCLUSION: Admission to hospital provides an opportunity to enhance care for children by addressing nicotine dependence within their families. Findings suggest routine recording of smoking status can be improved, to drive smoking cessation and brief intervention conversations with parents and carers of children admitted to hospital.

8.
BMC Health Serv Res ; 23(1): 440, 2023 May 04.
Artigo em Inglês | MEDLINE | ID: mdl-37143117

RESUMO

BACKGROUND: The growing demands for multidisciplinary cancer survivorship care require new approaches to address the needs of people living after a cancer diagnosis. Good Life-Cancer Survivorship is a self-management support survivorship program delivered by community allied health (AH) services for people diagnosed with cancer. A pilot study established the benefits of Good Life-Cancer Survivorship to help survivors manage their health and wellbeing in the community health setting. This study expanded the program to four community health services and evaluated the implementation outcomes of the referral pathway to the survivorship program. METHODS: Eligible cancer survivors attending hospital oncology services were referred to the survivorship program. Data was collected between 19/02/2021-22/02/2022 and included allied health service utilisation, consumer surveys, and interviews to understand consumer experience with the referral pathway. Interviews and focus groups with hospital and community health professionals explored factors influencing the referral uptake. Implementation outcomes included Adoption, Acceptability, Appropriateness, Feasibility, and Sustainability. RESULTS: Of 35 eligible survivors (mean age 65.5 years, SD = 11.0; 56% women), 31 (89%) accepted the referral. Most survivors had two (n = 14/31; 45%) or more (n = 11/31; 35%) allied health needs. Of 162 AH appointments (median appointment per survivor = 4; range = 1-15; IQR:5), 142/162 (88%) were scheduled within the study period and 126/142 (89%) were attended. Consumers' interviews (n = 5) discussed the referral pathway; continuation of survivorship care in community health settings; opportunities for improvement of the survivorship program. Interviews with community health professionals (n = 5) highlighted the impact of the survivorship program; cancer survivorship care in community health; sustainability of the survivorship program. Interviews (n = 3) and focus groups (n = 7) with hospital health professionals emphasised the importance of a trusted referral process; a holistic and complementary model of care; a person-driven process; the need for promoting the survivorship program. All evaluations favourably upheld the five implementation outcomes. CONCLUSIONS: The referral pathway provided access to a survivorship program that supported survivors in self-management strategies through tailored community allied health services. The referral pathway was well adopted and demonstrated acceptability, appropriateness, and feasibility. This innovative care model supports cancer survivorship care delivery in community health settings, with clinicians recommending sustaining the referral pathway.


Assuntos
Sobreviventes de Câncer , Neoplasias , Humanos , Feminino , Idoso , Masculino , Projetos Piloto , Sobreviventes , Neoplasias/terapia , Encaminhamento e Consulta , Serviços de Saúde
9.
J Med Internet Res ; 24(1): e30026, 2022 01 12.
Artigo em Inglês | MEDLINE | ID: mdl-35019851

RESUMO

BACKGROUND: Web-based mindfulness programs may be beneficial in improving the well-being outcomes of those living with chronic illnesses. Adherence to programs is a key indicator in improving outcomes; however, with the digitization of programs, it is necessary to enhance engagement and encourage people to return to digital health platforms. More information is needed on how engagement strategies have been used in web-based mindfulness programs to encourage adherence. OBJECTIVE: The aim of this study is to develop a list of engagement strategies for web-based mindfulness programs and evaluate the impact of engagement strategies on adherence. METHODS: A narrative systematic review was conducted across the MEDLINE Complete, CINAHL Complete, APA PsycINFO, and Embase databases and followed the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analysis) guidelines. Articles were screened using the population, intervention, comparator, and outcome framework. Adults aged >18 years with chronic health conditions were included in the study. Mindfulness interventions, including those in combination with mindfulness-based cognitive therapy, delivered on the web through the internet or smartphone technology were included. Interventions lasted at least 2 weeks. Studies with a randomized controlled trial design or a pilot randomized controlled trial design were included. Engagement strategies, including web-based program features and facilitator-led strategies, adherence, and retention, were included. RESULTS: A total of 1265 articles were screened, of which 19 were relevant and were included in the review. On average, 70.98% (2258/3181) of the study participants were women with a mean age of 46 (SD 13) years. Most commonly, mindfulness programs were delivered to people living with mental health conditions (8/19, 42%). Of the 19 studies, 8 (42%) used only program features to encourage adherence, 5 (26%) used facilitator-led strategies, and 6 (32%) used a combination of the two. Encouraging program adherence was the most common engagement strategy used, which was used in 77% (10/13) of the facilitator-led studies and 57% (8/14) of the program feature studies. Nearly two-thirds (63%) of the studies provided a definition of adherence, which varied between 50% and 100% completion across studies. The overall mean participant compliance to the mindfulness programs was 56% (SD 15%). Most studies (10/19, 53%) had a long-term follow-up, with the most common follow-up period being 12 weeks after intervention (3/10, 30%). After the intervention, the mean retention was 78% (SD 15%). CONCLUSIONS: Engagement strategies in web-based mindfulness programs comprise reminders to use the program. Other features may be suitable for encouraging adherence to interventions, and a facilitator-led component may result in higher retention. There is variance in the way adherence is measured, and intervention lengths and follow-up periods are inconsistent. More thorough reporting and a standardized framework for measuring adherence are needed to more accurately assess adherence and engagement strategies.


Assuntos
Terapia Cognitivo-Comportamental , Atenção Plena , Adulto , Doença Crônica , Feminino , Humanos , Internet , Pessoa de Meia-Idade , Ensaios Clínicos Controlados Aleatórios como Assunto , Smartphone
10.
Psychooncology ; 30(10): 1603-1625, 2021 10.
Artigo em Inglês | MEDLINE | ID: mdl-34133053

RESUMO

OBJECTIVE: Previous research has described the low uptake of psychosocial support services in people living with cancer. While characteristics of individuals using services have been examined, mechanisms applied to link individuals to support services are less frequently considered. This review aims to identify the mechanisms used to link people with cancer to support services and assess their impact. METHODS: Systematic searches of Pubmed, CINAHL, EMBASE and PsycINFO were conducted up to May 2020. Studies reporting service use associated with mechanisms to link adults with cancer to support services targeting emotional, informational, practical or social support needs were eligible. Eligible study designs included controlled trials, pre-post designs and observational studies. Study quality was assessed and a narrative synthesis of findings undertaken. RESULTS: A total of 10 papers (from 8,037 unique titles) were eligible. Testing the feasibility of the linkage mechanism was the primary aim in five (50%) studies. Three linkage mechanisms were identified: (a) outreach from the support service; (b) clinician recommendation/referral; (c) mailed invitation. Outreach was the most successful in connecting people with cancer to services (52%-90% use); clinician recommendation/referral was least successful (3%-28%). The impact of different linkage mechanisms for different demographic groups was not assessed. CONCLUSIONS: Outreach from services shows the most potential for increasing access to support services. However, the limited number of studies and limitations in the types of support services people with cancer were linked to, demonstrated the need for further work in this area. Identifying mechanisms that are effective for underserved, high-needs patient groups is also needed.


Assuntos
Neoplasias , Adulto , Humanos , Neoplasias/terapia , Encaminhamento e Consulta , Apoio Social , Serviço Social em Psiquiatria
11.
Age Ageing ; 50(5): 1792-1801, 2021 09 11.
Artigo em Inglês | MEDLINE | ID: mdl-33837769

RESUMO

BACKGROUND: The global population is ageing, and rates of multimorbidity and chronic illness are rapidly rising. Given specialist palliative care has been shown to improve overall care and reduce health care costs, how best to provide this care to older people is internationally significant. AIM: To examine the knowledge, attitudes and practices of geriatricians in providing palliative care and working with specialist palliative care services. We also aimed to capture self-reported barriers, confidence and satisfaction in providing palliative care. DESIGN: A prospective cross-sectional study surveying Australasian geriatricians was conducted. SETTING/PARTICIPANTS: This was a voluntary anonymous online survey, distributed to all full members of the Australian and New Zealand Society of Geriatric Medicine. RESULTS: A total of 168 completed responses were received; 58.3% were female and 36.6% had over 20 years of clinical experience. Most geriatricians (85%) reported caring for patients in their last 12 months of life represented a substantial aspect or most of their practice. Geriatricians overwhelmingly believed they should coordinate care (84%) and derived satisfaction from providing palliative care (95%). The majority (69%) believed all patients with advanced illness should receive concurrent specialist palliative care. Regarding knowledge, participants scored an average of 13.5 correct answers out of 18 in a Modified Palliative Care Knowledge Test. CONCLUSIONS: Geriatricians find reward in providing generalist palliative care to their patients; however, potential exists for improved collaborations with specialist palliative care services. An evidence base for geriatric patients who benefit most from specialist palliative care services is needed to improve resourcing, collaborative practice and ultimately palliative care delivery.


Assuntos
Geriatras , Cuidados Paliativos , Idoso , Atitude do Pessoal de Saúde , Austrália , Estudos Transversais , Feminino , Humanos , Estudos Prospectivos
12.
Fam Pract ; 38(6): 786-792, 2021 11 24.
Artigo em Inglês | MEDLINE | ID: mdl-34293103

RESUMO

BACKGROUND: Shared breast cancer follow-up care involving a breast cancer specialist and a general practitioner (GP) has been demonstrated to be effective, yet barriers to participation in this model by women remain. This study explores the responses of women who recently finished active treatment for early breast cancer (EBC) to a proposed model of shared follow-up care to understand the type of information needed to support participation. METHODS: Qualitative study based on focus groups with women with EBC in the early stage of follow-up care from across metropolitan, regional and rural settings in Australia. Discussions were transcribed and thematic analysis is undertaken. RESULTS: Four focus groups were conducted, involving 31 women aged between 32 and 78 years. The discussion focused on two topics. In the first topic 'Current experiences of follow-up care', two themes emerged: (i) follow-up as a continuation of active treatment; (ii) GPs involvement in care during active treatment influence attitudes to shared follow-up care. In the second topic area 'Perceptions of shared follow-up care' four themes emerged: (i) a need for evidence regarding model effectiveness; (ii) choice; (iii) concerns regarding capacity and capability of GPs to deliver care and (iv) the need for clear communication between GPs, specialists and women. CONCLUSIONS: Women need information regarding the evidence for the effectiveness of shared follow-up care to assure them it does not pose a risk to their health outcomes. Clear descriptions of GP and specialist roles and the opportunity to jointly decide participation is essential for the model to be adopted.


Assuntos
Neoplasias da Mama , Clínicos Gerais , Adulto , Assistência ao Convalescente , Idoso , Neoplasias da Mama/terapia , Feminino , Grupos Focais , Humanos , Pessoa de Meia-Idade , Pesquisa Qualitativa
13.
Value Health ; 23(11): 1477-1488, 2020 11.
Artigo em Inglês | MEDLINE | ID: mdl-33127019

RESUMO

OBJECTIVES: To compare the psychometric properties of the Adult Social Care Outcomes Toolkit for carers (ASCOT-Carer), the Carer Experience Scale (CES), and the Care-related Quality of Life (CarerQol) to inform the choice of instrument in future studies. METHODS: Data were derived from a 2018 online survey of informal carers in Australia. Reliability was assessed via internal consistency (Cronbach alpha, α) and test-retest reliability (intraclass correlation coefficient, ICC) for respondents who self-reported no change in their quality of life as a carer over 2 weeks. Convergent validity was evaluated via predetermined hypotheses about associations (Spearman's rank correlation) with existing, validated measures. Discriminative validity was assessed based on the ability of the carer-related scores to distinguish between different informal care situations (Mann-Whitney U, Kruskal-Wallis one-way analysis of variance). RESULTS: Data from 500 carers were analyzed. The ASCOT-Carer demonstrated a higher degree of internal consistency, possibly due to a unidimensional structure, and test-retest reliability than the CarerQol and CES (α = 0.87, 0.65, 0.59; ICC, 0.87, 0.67, 0.81, respectively). All 3 instruments exhibited convergent validity and detected statistically significant associations between carer-related scores and different informal care situations, except for the CarerQol-7D and sole carer status. CONCLUSIONS: The ASCOT-Carer, CarerQol, and CES performed reasonably well psychometrically; the ASCOT-Carer exhibited the best psychometric properties overall in this sample of Australian informal carers. Findings should be used in conjunction with consideration of research goals, carer population, targeted carer-related constructs, and prevailing perspectives on the economic evaluation to inform choice of instrument in future studies.


Assuntos
Cuidadores/estatística & dados numéricos , Psicometria/estatística & dados numéricos , Qualidade de Vida/psicologia , Apoio Social , Inquéritos e Questionários , Austrália , Feminino , Humanos , Internet , Masculino , Pessoa de Meia-Idade , Reprodutibilidade dos Testes , Autorrelato
14.
Psychooncology ; 28(4): 687-701, 2019 04.
Artigo em Inglês | MEDLINE | ID: mdl-30716183

RESUMO

OBJECTIVE: nformal caregivers provide substantial support for people living with cancer. Previous systematic reviews report on the efficacy of cancer caregiver interventions but not their potential to be implemented. The aim of this systematic review was to explore the potential for cancer caregiver interventions to be implemented into practice. METHODS: We searched three electronic databases to identify cancer caregiver interventions on 5 January 2018. We operationalised six implementation outcomes (acceptability, adoption, appropriateness, feasibility, fidelity, and costs) into a tool to guide data extraction. RESULTS: The search yielded 33 papers (27 papers from electronic databases and six papers from other sources) reporting on 26 studies that met review criteria. Fewer than half the studies (46%) contained evidence about the acceptability of interventions from caregivers' perspectives; only two studies (8%) included interventions developed with input from caregivers. Two studies (8%) addressed potential adoption of interventions, and no studies discussed intentions, agreement, or action to implement interventions into practice. All studies reported on intervention appropriateness by providing a rationale for the interventions. For feasibility, on average less than one-third of caregivers who were eligible to be involved consented to participate. On fidelity, whether interventions were conducted as intended was reported in 62% of studies. Cost data were reported in terms of intervention delivery, requiring a median time commitment of staff of 180 minutes to be delivered. CONCLUSIONS: Caregiver intervention studies lack components of study design and reporting that could bridge the gap between research and practice. There is enormous potential for improvements in cancer caregiver intervention study design to plan for future implementation.


Assuntos
Cuidadores/psicologia , Promoção da Saúde/métodos , Neoplasias/psicologia , Aconselhamento/métodos , Comportamentos Relacionados com a Saúde , Humanos , Neoplasias/enfermagem , Apoio Social
15.
Support Care Cancer ; 27(7): 2735-2746, 2019 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-30506103

RESUMO

PURPOSE: This study assessed the feasibility and acceptability of an online mindfulness-based intervention (MBI) for people diagnosed with melanoma. The potential benefit of the MBI on fear of cancer recurrence (FCR), worry, rumination, perceived stress and trait mindfulness was also explored. METHODS: Participants who have completed treatment for stage 2c or 3 melanoma were recruited from an outpatient clinic and randomly allocated to either the online MBI (intervention) or usual care (control). The 6-week online MBI comprised short videos, daily guided meditations and automated email reminders. Participants were asked to complete questionnaires at baseline and at 6-week post-randomisation. Study feasibility and acceptability were assessed through recruitment rates, retention and participant feedback. Clinical and psychosocial outcomes were compared between groups using linear mixed models. RESULTS: Sixty-nine (58%) eligible participants were randomised (46 in the intervention; 23 in the control group); mean age was 53.4 (SD 13.1); 54% were female. Study completion rate across both arms was 80%. The intervention was found helpful by 72% of the 32 respondents. The intervention significantly reduced the severity of FCR compared to the control group (mean difference = - 2.55; 95% CI - 4.43, - 0.67; p = 0.008). There was no difference between the intervention and control groups on any of the outcome measures. CONCLUSIONS: This online MBI was feasible and acceptable by people at high risk of melanoma recurrence. It significantly reduced FCR severity in this sample. Patients valued accessing the program at their own pace and convenience. This self-guided intervention has the potential to help survivors cope with emotional difficulties. An adequately powered randomised controlled trial to test study findings is warranted.


Assuntos
Melanoma/terapia , Atenção Plena/métodos , Neoplasias Cutâneas/terapia , Adaptação Psicológica , Ansiedade/etiologia , Ansiedade/psicologia , Ansiedade/terapia , Sobreviventes de Câncer/psicologia , Estudos de Viabilidade , Feminino , Humanos , Internet , Masculino , Melanoma/psicologia , Pessoa de Meia-Idade , Recidiva Local de Neoplasia/psicologia , Recidiva Local de Neoplasia/terapia , Avaliação de Resultados em Cuidados de Saúde , Projetos Piloto , Neoplasias Cutâneas/psicologia , Inquéritos e Questionários , Telemedicina/métodos
16.
Palliat Med ; 33(6): 562-569, 2019 06.
Artigo em Inglês | MEDLINE | ID: mdl-30688145

RESUMO

BACKGROUND: Debate about appropriate and ethically acceptable end-of-life choices is ongoing, which includes discussion about the legalization of voluntary assisted dying. Given health professionals' role in caring for patients at the end life, their stance towards assisting a person with dying can have implications for policy development and implementation in jurisdictions where law changes are being considered. AIM: To explore end-of-life care professionals' attitudes towards voluntary assisted dying 6 months prior to vote on legalization. DESIGN: Qualitative study using textual data collected through semi-structured interviews. Purposive sampling strategy used to collect a broad representation of perspectives. Audio-recorded interviews were transcribed verbatim and subjected to qualitative descriptive analysis techniques. PARTICIPANTS: A total of 16 health professionals with experience in caring for people with life-limiting illness. RESULTS: Participants reported two overarching positions grounded in differing moral philosophies with compelling arguments both for and against legalization of voluntary assisted dying. A third and common line of argument emerged from areas of shared concern and uncertainty about the practical consequences of introducing voluntary assisted dying. While a diversity of opinion was evident, all participants advocated for more public education and funding into end-of-life care services to make high-quality care equitable and widely available. CONCLUSION: Common dedication to reducing suffering and facilitating good dying experiences exists among experts despite their divergent views on voluntary assisted dying. Ongoing engagement with stakeholders is needed for practical resolution in the interest of developing health policy for best patient care.


Assuntos
Atitude do Pessoal de Saúde , Pessoal de Saúde/ética , Pessoal de Saúde/psicologia , Suicídio Assistido/ética , Suicídio Assistido/psicologia , Assistência Terminal/ética , Assistência Terminal/psicologia , Adulto , Atitude Frente a Morte , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Pesquisa Qualitativa
17.
Eur J Cancer Care (Engl) ; 28(4): e13096, 2019 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-31094044

RESUMO

OBJECTIVE: Wellness centres offer people affected by cancer to access to information and services in a supportive environment. This study aimed to understand stakeholder opinions and perspectives about the potential of wellness centres to contribute to cancer care. METHODS: This study adopted a qualitative approach with health professionals, leaders of key cancer organisations and cancer policy stakeholders interviewed. Results were analysed with thematic analysis. RESULTS: Twenty-three stakeholders representing 13 organisations participated. The following three key themes were identified: (a) The promise and ambition of wellness centres; (b) The hesitations and questions; and (c) Optimising wellness. While many recognised the ambition of wellness centres to offer non-clinical spaces and support for patients and family, there were several concerns raised about the drivers, evidence, throughput, access and equity of services, in the context of other cancer care priorities. Participants made recommendations that focused on use of data; models of community or clinical integration; accessibility and scope; approaches to engaging minority or disadvantaged groups and contribution to cancer care and psycho-oncology. CONCLUSION: Professional stakeholders hold varied views about the potential of wellness centres in contributing to cancer care. Research opportunities include understanding models of community clinical engagement and how to engage minority or disadvantaged populations to ensure equity of access.


Assuntos
Institutos de Câncer , Academias de Ginástica , Neoplasias/terapia , Participação dos Interessados/psicologia , Atitude do Pessoal de Saúde , Atitude Frente a Saúde , Atenção à Saúde/normas , Feminino , Humanos , Masculino , Neoplasias/psicologia , Apoio Social
18.
Psychooncology ; 27(3): 946-954, 2018 03.
Artigo em Inglês | MEDLINE | ID: mdl-29268006

RESUMO

OBJECTIVE: Female partners of men with prostate cancer (PCa) experience heightened psychological distress; however, long-term distress for this group is not well described. We examined partner's psychological and cancer-specific distress over 2 years and predictors of change. METHODS: A cohort of 427 female partners (63% response; mean age 62.6 y) of PCa survivors completed baseline (2-4 y post-PCa treatment) assessments of anxiety, depression, and cancer-specific distress and were followed up at 6, 12, 18, and 24 months. Caregiver burden, threat and challenge appraisal, self-efficacy, and dyadic adjustment were assessed as potential predictors of distress. RESULTS: Over time, 23% to 25% of women reported anxiety; 8% to 11% depression; 5% to 6% high cancer-specific distress. Higher caregiver burden and more threat appraisals were associated with increased distress, anxiety, depression, and cancer-specific distress over time. Higher dyadic adjustment over time and more challenge appraisals at 24 months were associated with less distress, anxiety, and depression. Increased partner self-efficacy was associated with lower distress and depression at baseline. CONCLUSIONS: A substantial subgroup of partners experience ongoing anxiety, with depression less prevalent but also persistent. Caregiver burden, partner self-efficacy, threat, and challenge appraisals present as potential supportive care targets.


Assuntos
Ansiedade/psicologia , Cuidadores/psicologia , Depressão/psicologia , Neoplasias da Próstata/psicologia , Cônjuges/psicologia , Estresse Psicológico/psicologia , Adulto , Idoso , Idoso de 80 Anos ou mais , Feminino , Humanos , Estudos Longitudinais , Masculino , Pessoa de Meia-Idade , Qualidade de Vida/psicologia
20.
Support Care Cancer ; 26(11): 3765-3771, 2018 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-29749585

RESUMO

PURPOSE: While advance care planning holds promise, uptake is variable and it is unclear how well people engage with or comprehend advance care planning. The objective of this study was to explore how people with cancer comprehended advance care plans and examine how accurately advance care planning documentation represented patient wishes. METHODS: This study used a qualitative descriptive design. Data collection comprised interviews and an examination of participants' existing advance care planning documentation. Participants included those who had any diagnosis of cancer with an advance care plan recorded: Refusal of Treatment Certificate, Statement of Choices, and/or Enduring Power of Attorney (Medical Treatment) at one cancer treatment centre. RESULTS: Fourteen participants were involved in the study. Twelve participants were female (86%). The mean age was 77 (range: 61-91), and participants had completed their advance care planning documentation between 8 and 72 weeks prior to the interview (mean 33 weeks). Three themes were evident from the data: incomplete advance care planning understanding and confidence, limited congruence for attitude and documentation, advance care planning can enable peace of mind. Complete advance care planning understanding was unusual; most participants demonstrated partial comprehension of their own advance care plan, and some indicated very limited understanding. Participants' attitudes and their written document congruence were limited, but advance care planning was seen as helpful. CONCLUSIONS: This study highlighted advance care planning was not a completely accurate representation of patient wishes. There is opportunity to improve how patients comprehend their own advance care planning documentation.


Assuntos
Planejamento Antecipado de Cuidados , Adesão a Diretivas Antecipadas , Documentação , Conhecimentos, Atitudes e Prática em Saúde , Neoplasias/terapia , Percepção , Assistência Terminal , Planejamento Antecipado de Cuidados/organização & administração , Planejamento Antecipado de Cuidados/normas , Planejamento Antecipado de Cuidados/estatística & dados numéricos , Adesão a Diretivas Antecipadas/organização & administração , Adesão a Diretivas Antecipadas/normas , Adesão a Diretivas Antecipadas/estatística & dados numéricos , Idoso , Idoso de 80 Anos ou mais , Comportamento de Escolha , Compreensão , Documentação/normas , Estudos de Avaliação como Assunto , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Neoplasias/psicologia , Inquéritos e Questionários , Assistência Terminal/organização & administração , Assistência Terminal/psicologia , Assistência Terminal/normas
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