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1.
Aust Occup Ther J ; 71(1): 52-63, 2024 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-37806961

RESUMO

INTRODUCTION: People living with advanced cancer want to continue participating in their valued occupations amid cancer progression. However, increasing dependence and bodily deterioration challenge a person's ability to do so, thus requiring adaptation to how they engage in their occupations. Theoretical frameworks on the process of occupational adaptation often do not address the implications of progressive functional decline. METHODS: A longitudinal phenomenological design was used to understand the lived experience of occupational engagement for working-aged adults living with advanced cancer. A semi-structured interview series explored participants' experience of occupational engagement and how this changed over time. Data were analysed thematically and mapped against the Model of Human Occupation (MOHO). FINDINGS: Eight adults (40-64 years old) participated in 33 interviews over 19 months. Three themes were constructed from the data: ongoing adaptation through doing, the significance of volition in adaptation, and everyday life is contingent on my environment. Study findings demonstrate that the process of adaptation occurs through occupational engagement, is motivated by volition, and is affected by the environment. Volition and the environment play a more central role in occupational adaptation than occupational competency for the advanced cancer cohort. CONCLUSION: Study findings further MOHO's theoretical conceptualisation of occupational adaptation by identifying the centrality of volition and the environment in the process of adaptation. For people living with advanced cancer, disease progression results in unremitting functional decline, thus rendering competency an unstable and untenable construct. Rather, this paper argues that occupational adaptation is facilitated by volition (i.e., the motivation behind the doing) and the environment, thus fostering a sense of identity and meaning at the end of life. Occupational therapists' awareness of the significance of volition and the environment can thus foster continued occupational engagement and meaning at the end of life for people living with advanced cancer.


Assuntos
Neoplasias , Terapia Ocupacional , Adulto , Humanos , Pessoa de Meia-Idade , Estudos Longitudinais , Terapeutas Ocupacionais , Morte
2.
Palliat Med ; 37(8): 1210-1221, 2023 09.
Artigo em Inglês | MEDLINE | ID: mdl-37310026

RESUMO

BACKGROUND: People living with advanced cancer experience functional decline and increasing difficulty participating in activities of daily living over their final year of life, consequently reducing quality of life. Palliative rehabilitation may serve to mitigate some of these challenges by optimising function. However, limited research and theory explore the rehabilitative process of adaptation amid increasing dependency, often experienced by people living with advanced cancer. AIM: To explore the lived experience of everyday life for working-aged adults living with advanced cancer, and how this changes over time. DESIGN: A longitudinal hermeneutic phenomenological approach was employed, using in-depth semi-structured interviews. Data was analysed using inductive thematic analysis, and findings mapped against the Model of Human Occupation and illness experience literature. SETTING/PARTICIPANTS: Purposively sampled working-aged adults (40-64 years) with advanced cancer were recruited by a rural home care team in Western Canada. RESULTS: Thirty-three in-depth interviews were conducted over 19 months with eight adults living with advanced cancer. Advanced cancer and other losses have a disruptive impact on daily life. Despite experiencing progressive functional decline, these adults intentionally sought to participate in valued everyday activities. Adaptation to ongoing deterioration occurred through engagement in daily life. CONCLUSIONS: Despite experiencing disruption to routines and daily life, people living with advanced cancer seek to continue doing what is important to them, albeit in a modified form. Adaptation to functional decline is an active, ongoing process and occurs through continued engagement in activities. Palliative rehabilitation can facilitate participation in everyday life.


Assuntos
Serviços de Assistência Domiciliar , Neoplasias , Humanos , Adulto , Pessoa de Meia-Idade , Atividades Cotidianas , Qualidade de Vida , Estudos Longitudinais , Pesquisa Qualitativa
3.
Palliat Med ; 37(1): 131-139, 2023 01.
Artigo em Inglês | MEDLINE | ID: mdl-36267025

RESUMO

BACKGROUND: Little is known about the specific needs and experiences of individuals with long-standing physical disability at end of life. AIM: To explore health and disability care providers perspectives and experiences in relation to end-of-life care needs of individuals with long-standing physical disability. DESIGN: Qualitative study using reflexive thematic analysis. SETTING/PARTICIPANTS: Semi-structured interviews were conducted with nine health and disability care providers from two Australian states. RESULTS: Five themes were constructed from the data: (1) The significance of place. All participants described how the end-of-life care experience was significantly impacted by the place in which dying occurred. (2) Knowing the person and their needs. Knowledge and familiarity with the individual with long-standing disability were seen as invaluable in terms of providing continued high-quality care. (3) Navigating a new care landscape. For disability support workers, struggling to adapt from providing disability support to end-of-life care was difficult. (4) Complexities of family involvement. Past experiences of families within the healthcare system had resultant impacts on care received by the individual with long-standing disability. (5) Being prepared. Participants felt more was needed in terms of end-of-life planning and discussions around end of life for this cohort. CONCLUSIONS: This research highlights a significant lack of continuity of care and problems at the intersection of the disability and health systems when providing end-of-life care for this cohort. Suggested areas for improvement include team approaches to enable continuity of care and dying in place, and a need for knowledge and skills in this area for all stakeholders.


Assuntos
Cuidados Paliativos na Terminalidade da Vida , Assistência Terminal , Humanos , Austrália , Morte , Pesquisa Qualitativa
4.
Palliat Med ; 37(4): 602-626, 2023 04.
Artigo em Inglês | MEDLINE | ID: mdl-36428280

RESUMO

BACKGROUND: In 2020, the International Association for Hospice and Palliative Care redefined palliative care to incorporate the concept of serious health-related suffering. An estimated 21 million children globally live with conditions which would benefit from a palliative approach to relieve suffering. Bangladesh is a lower-middle income country with isolated provision of palliative care. AIM: To synthesise existing evidence describing serious health-related suffering of children with disability and their families living in Bangladesh and the intersection between this suffering, palliative care and rehabilitation. DESIGN: Scoping review methodology. DATA SOURCES: A search strategy related to serious health-related suffering and childhood disability was applied to online databases and grey literature. English language studies (1990-2021) were included. Papers pertaining to serious health-related suffering of typically developing children and those over eighteen years were excluded. Data which addressed the three domains of serious health-related suffering (physical, social and emotional/spiritual) were extracted. Palliative care interventions were assessed with a pre-existing checklist. RESULTS: Forty-six studies were included, representing ten different methodologies. Sample sizes ranged from 11 to 2582 participants, with 87% of studies including children with cerebral palsy. Serious health-related suffering was described in 100% of the studies, only 14 of the studies described specific interventions to mitigate suffering. Convergence between palliative care and rehabilitation approaches was evident. CONCLUSION: Findings document the extensive nature and burden of serious childhood health-related suffering that may be remediated by a palliative approach. They highlight the urgent need to prioritise service development and research in this area.


Assuntos
Crianças com Deficiência , Cuidados Paliativos na Terminalidade da Vida , Hospitais para Doentes Terminais , Criança , Humanos , Bangladesh , Cuidados Paliativos/métodos
5.
Palliat Med ; 37(9): 1389-1401, 2023 10.
Artigo em Inglês | MEDLINE | ID: mdl-37534430

RESUMO

BACKGROUND: While evidence shows that occupational therapists can play a key role in the care of people with palliative care needs, more knowledge about effective occupational therapy interventions for this group is needed. AIM: To identify, organise and prioritise intervention components considered to be effective within occupational therapy for people with palliative care needs from the perspective of occupational therapy clinicians, managers and researchers. DESIGN: Group Concept Mapping utilising a mixed methods participatory approach. Using a focus prompt, participants brainstormed, sorted, labelled and rated generated statements about effective occupational therapy intervention components. Multidimensional scaling analysis and cluster analysis were conducted. SETTING/PARTICIPANTS: Snowball recruitment was used to recruit participants. Participants included occupational therapists worldwide who were able to read and write in English and were working as clinicians, managers and/or researchers with occupational therapy interventions for people with palliative care needs. RESULTS: Seventy-two occupational therapists from 15 countries participated in the study representing Asia (n = 3, 20%), Europe (n = 8, 53%), Oceania (n = 2, 13%) and North America (n = 2, 13%). A total of 117 statements were identified and organised into five clusters: (1) being client-centred, (2) promoting occupational engagement to optimise quality of life, (3) involving the social and relational environment, (4) enabling occupations and (5) facilitating occupational adaptation. CONCLUSIONS: Five clusters of core occupational therapy intervention components were considered to be effective when supporting people with palliative care needs. Research should use this knowledge to inform future occupational therapy interventions for this group of people.


Assuntos
Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Terapia Ocupacional , Humanos , Cuidados Paliativos/métodos , Consenso , Qualidade de Vida
6.
Fam Pract ; 40(2): 360-368, 2023 03 28.
Artigo em Inglês | MEDLINE | ID: mdl-36063437

RESUMO

BACKGROUND: Multimorbidity is prevalent in general practice and general practitioners internationally report challenges in its management. Understanding the perspectives of general practitioners at the frontline of care is important for system sustainability and accessibility as populations age. OBJECTIVE: To explore Australian general practitioner perspectives on managing multimorbidity, the factors supporting their work, and those impeding their ability to meet their own standards of care provision. METHOD: A qualitative study conducted with Australian general practitioners using semistructured, in-depth interviews and inductive thematic data analysis. RESULTS: Twelve interviews with general practitioners were conducted. Three main themes were constructed from the data: Multimorbidity as an encounter with complexity and contingency; Evidence constraints in multimorbidity care; and Concerns for patient safety. System structure and the Australian general practice model restrict general practitioners' ability to provide care to their level of satisfaction by linking short consultation times to practice remuneration. Attitudes toward the applicability of guideline evidence were mixed despite most general practitioners questioning its generalizability. Patient safety concerns pervaded most interviews and largely centered on system fragmentation and insufficient intersectoral communication. General practitioners rely on multiple sources of information to provide patient-centered care but chiefly the accumulated knowledge of their patients. CONCLUSIONS: Australian general practitioners share many multimorbidity concerns with international colleagues. While multimorbidity-specific evidence may be unrealistic to expect in the immediate term, system investment and adaptation is needed to support general practice sustainability and clinician ability to provide adequate multimorbidity care, suitably remunerated, into the future.


Assuntos
Medicina Geral , Clínicos Gerais , Humanos , Multimorbidade , Austrália , Pesquisa Qualitativa
7.
Aust Occup Ther J ; 70(5): 570-580, 2023 10.
Artigo em Inglês | MEDLINE | ID: mdl-37271728

RESUMO

OBJECTIVES: Providing optimal support for carers of people with advanced cancer is critical to facilitating discharge home from hospital. Carer Support Needs Assessment Tool-Intervention (CSNAT-I) has shown promise in supporting carers' needs in this context. This study aimed to explore patient and carers experiences with and views on the acceptability of the CSNAT-I delivered by occupational therapists in an acute oncology setting. METHODS: People with advanced cancer and their carers who had previously received the CSNAT-I as part of usual care while admitted to an Australian specialist cancer centre or acute hospital were invited to participate in interviews exploring their perceptions of the intervention. Data were analysed thematically. RESULTS: Two patients and 10 carers participated in semi-structured interviews. Three themes were constructed from the data: Carers viewed the CSNAT-I as comprehensive process that (1) 'covered everything' related to discharge planning; (2) generated an 'increased awareness of needs' for themselves, patients, and clinicians; and (3) triggered an emotional response of feeling 'wrapped up in care' that was maintained as they moved from hospital to home. CONCLUSION: This study has demonstrated that the CSNAT-I was highly acceptable to carers as part of existing discharge processes supporting them through the transition from hospital to home and can be delivered by occupational therapists and other clinicians with a natural synergy to discharge planning. These findings will inform further development and testing of the delivery model of the CSNAT-I in future trials.


Assuntos
Neoplasias , Terapia Ocupacional , Humanos , Cuidadores/psicologia , Austrália , Pesquisa Qualitativa , Cuidados Paliativos/psicologia
8.
Aust Occup Ther J ; 69(3): 341-373, 2022 06.
Artigo em Inglês | MEDLINE | ID: mdl-35199343

RESUMO

INTRODUCTION: People with end-of-life care needs are seen in an increasingly diverse range of health and community settings. Opportunity for continued occupational participation is highly valued by people at the end of life. This scoping review sought to identify the priorities and preferences for participation at the end of life and to map findings using the model of human occupation. METHODS: A search strategy informed by the research question was developed in collaboration with a research librarian. Data sources used were Ovid Medline(R), CINAHL, Ovid Emcare, Scopus, Web of Science and PsychInfo. Studies that focused on clinician perspectives, clinical care, grief and loss, did not clearly identify end-stage diseases, <18 years and written in languages other than English were excluded. FINDINGS: Forty-four studies were included with a total of 1,070 study participants. Inductively developed themes were mapped against the model of human occupation constructs of volition (personal causation, values, interests), habituation (habits of occupational performance and routine), performance capacity and the lived body within the physical, social and occupational environment. The majority of findings sat within the construct of volition, particularly around sense of personal capacity, self-efficacy and values. At the end of life, people prioritise ongoing engagement in valued occupations even if participation is effortful. As disease progresses, opportunity to exert influence and control over this participation and engagement increases in importance. Personal causation plays an important role in the experience of occupational participation at this time. CONCLUSION: This review provides important insights into the occupational priorities of people at the end of life and the importance of supporting agency and volition at this time. The model of human occupation and its client-centred focus offer a framework for a more robust examination of ways to enhance volitional capacity and enable occupational participation for people at the end of life.


Assuntos
Terapia Ocupacional , Morte , Humanos , Ocupações , Cuidados Paliativos
9.
Palliat Med ; 35(7): 1366-1377, 2021 07.
Artigo em Inglês | MEDLINE | ID: mdl-34044651

RESUMO

BACKGROUND: People at the end of life experience increased dependence with self-care as disease progresses, including care with intimate hygiene. Dependence with intimate hygiene has been identified as a factor that may compromise dignity at the end of life. However, adaption to increased dependency and subsequent impact on dignity with intimate hygiene is an under-researched area. AIM: This study sought to understand how people at the end of life experience dignity with intimate hygiene when function declines and how people adapt to increased dependence with intimate hygiene needs. DESIGN: A qualitative design was employed using a hermeneutic phenomenological perspective which privileges participant perspectives. Findings were mapped against occupational therapy and dignity literature. SETTING/PARTICIPANTS: Participants were people with advanced disease receiving inpatient or community palliative care. RESULTS: Eighteen interviews were conducted with people about their experiences and perspectives of dignity with intimate hygiene. The following themes were constructed from the data: (1) There's a way of doing and a way of asking, (2) Putting each other at ease, (3) It's just how it is, (4) Regaining and retaining control. How people adjust to dependence with intimate hygiene is individually mediated. Patterns of occupational adaptation to increased dependence with intimate hygiene and practical implications for care are discussed. CONCLUSION: Adaptation to increased dependence with intimate hygiene is facilitated by enabling moments of micro-competence and agency over how care is received. Carers play a pivotal role in compromising or conserving the dignity with intimate hygiene at the end of life.


Assuntos
Respeito , Assistência Terminal , Humanos , Higiene , Pacientes Internados , Cuidados Paliativos , Pesquisa Qualitativa
10.
BMC Palliat Care ; 20(1): 57, 2021 Apr 13.
Artigo em Inglês | MEDLINE | ID: mdl-33849499

RESUMO

BACKGROUND: Hospital admissions for end-of-life care are increasing exponentially across the world. Significant numbers of health professionals are now required to provide end-of-life care with minimal training. Many health professionals report they lack confidence to provide this care, particularly those in acute hospital settings. This study explored the perceived benefits of online education on health professionals' capacity to provide end-of-life care. METHODS: This qualitative study adopted a pragmatic approach. Thirty semi-structured interviews were conducted with allied health professionals, nurses and doctors who had completed a minimum of three End-of-Life Essentials online education modules. Interviews were held on line and face-to-face, audio-recorded and transcribed verbatim. Demographic data were also collected. Three major themes and one minor theme were constructed from the data using inductive thematic analysis. RESULTS: Themes were (1). Perceptions of preparedness to provide end-of-life care, (2). Shifts in approaching end-of-life discussions and (3). Motivation for engagement with online modules. Participants reported validation of knowledge and improved confidence to have end-of-life discussions with patients, carers and team members. They also noted improved ability to recognise the dying process and improved conversations with team members about patient and carer needs. Videos portraying a novice and then more able end-of-life discussions were particularly valued by participants. Modules provided practical guidance on how to engage in discussions about the end of life and care needs. Participants were self-motivated to improve their knowledge and skills to enhance end-of-life care provision. Continuing professional development requirements were also a motivator for module completion. CONCLUSIONS: This study explored health professionals' perspectives about the perceived benefits of online education modules on their clinical practice. Module completion enhanced participant confidence and self-reported improved competence in end-of-life care provision. Findings build on existing research that supports the valuable role online education plays in supporting confidence and ability to actively engage with patients, carers and colleagues about provision of end-of-life care; however, self-report cannot be used as a proxy for improved clinical competence.


Assuntos
Educação a Distância , Assistência Terminal , Morte , Pessoal de Saúde/educação , Humanos , Pesquisa Qualitativa
11.
BMC Fam Pract ; 21(1): 131, 2020 07 01.
Artigo em Inglês | MEDLINE | ID: mdl-32611391

RESUMO

BACKGROUND: General practitioners (GPs) increasingly manage patients with multimorbidity but report challenges in doing so. Patients describe poor experiences with health care systems that treat each of their health conditions separately, resulting in fragmented, uncoordinated care. For GPs to provide the patient-centred, coordinated care patients need and want, research agendas and health system structures and policies will need to adapt to address this epidemiologic transition. This systematic review seeks to understand if and how multimorbidity impacts on the work of GPs, the strategies they employ to manage challenges, and what they believe still needs addressing to ensure quality patient care. METHODS: Systematic review and thematic synthesis of qualitative studies reporting GP experiences of managing patients with multimorbidity. The search included nine major databases, grey literature sources, Google and Google Scholar, a hand search of Journal of Comorbidity, and the reference lists of included studies. RESULTS: Thirty-three studies from fourteen countries were included. Three major challenges were identified: practising without supportive evidence; working within a fragmented health care system whose policies and structures remain organised around single condition care and specialisation; and the clinical uncertainty associated with multimorbidity complexity and general practitioner perceptions of decisional risk. GPs revealed three approaches to mitigating these challenges: prioritising patient-centredness and relational continuity; relying on knowledge of patient preferences and unique circumstances to individualise care; and structuring the consultation to create a sense of time and minimise patient risk. CONCLUSIONS: GPs described an ongoing tension between applying single condition guidelines to patients with multimorbidity as security against uncertainty or penalty, and potentially causing patients harm. Above all, they chose to prioritise their long-term relationships for the numerous gains this brought such as mutual trust, deeper insight into a patient's unique circumstances, and useable knowledge of each individual's capacity for the work of illness and goals for life. GPs described a need for better multimorbidity management guidance. Perhaps more than this, they require policies and models of practice that provide remunerated time and space for nurturing trustful therapeutic partnerships.


Assuntos
Medicina Geral , Multimorbidade/tendências , Administração dos Cuidados ao Paciente/métodos , Assistência Centrada no Paciente , Prática Clínica Baseada em Evidências , Medicina Geral/métodos , Medicina Geral/organização & administração , Medicina Geral/tendências , Transição Epidemiológica , Humanos , Avaliação das Necessidades , Assistência Centrada no Paciente/organização & administração , Assistência Centrada no Paciente/normas
12.
Palliat Med ; 33(6): 693-703, 2019 06.
Artigo em Inglês | MEDLINE | ID: mdl-30916620

RESUMO

BACKGROUND: Understanding current patterns of functional decline will inform patient care and has health service and resource implications. AIM: This prospective consecutive cohort study aims to map the shape of functional decline trajectories at the end of life by diagnosis. DESIGN: Changes in functional status were measured using the Australia-modified Karnofsky Performance Status Scale. Segmented regression was used to identify time points prior to death associated with significant changes in the slope of functional decline for each diagnostic cohort. Sensitivity analyses explored the impact of severe symptoms and late referrals, age and sex. SETTING/PARTICIPANTS: In all, 115 specialist palliative care services submit prospectively collected patient data to the national Palliative Care Outcomes Collaboration across Australia. Data on 55,954 patients who died in the care of these services between 1 January 2013 and 31 December 2015 were included. RESULTS: Two simplified functional decline trajectories were identified in the last 4 months of life. Trajectory 1 has an almost uniform slow decline until the last 14 days of life when function declines more rapidly. Trajectory 2 has a flatter more stable trajectory with greater functional impairment at 120 days before death, followed by a more rapid decline in the last 2 weeks of life. The most rapid rate of decline occurs in the last 2 weeks of life for all cohorts. CONCLUSIONS: Two simplified trajectories of functional decline in the last 4 months of life were identified for five patient cohorts. Both trajectories present opportunities to plan for responsive healthcare that will support patients and families.


Assuntos
Atividades Cotidianas , Disfunção Cognitiva , Idoso Fragilizado/estatística & dados numéricos , Cuidados Paliativos/estatística & dados numéricos , Assistência Terminal/estatística & dados numéricos , Adolescente , Adulto , Idoso , Idoso de 80 Anos ou mais , Austrália , Criança , Pré-Escolar , Estudos de Coortes , Feminino , Humanos , Lactente , Recém-Nascido , Masculino , Pessoa de Meia-Idade , Estudos Prospectivos , Adulto Jovem
13.
Aust J Prim Health ; 23(5): 458-463, 2017 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-28946942

RESUMO

Benefits of case conferencing for people with palliative care needs between a general practitioner, the person and other key participants include improving communication, advance care planning, coordination of care, clarifying goals of care and support for patient, families and carers. Despite a growing evidence base for the benefits, the uptake of case conferencing has been limited in South Australia. The aim of this study is to explore the beliefs and practice of South Australian general practitioners towards case conferencing for people with palliative care needs. Using an online survey, participants were asked about demographics, attitudes towards case conferencing and details about their most recent case conference for a person with palliative care needs. Responses were received from 134 general practitioners (response rate 11%). In total, 80% valued case conferencing for people with palliative care needs; however, <25% had been involved in case conferencing in the previous 2years. The major barrier was time to organise and coordinate case conferences. Enablers included general practitioner willingness or interest, strong relationship with patient, specialist palliative care involvement and assistance with organisation. Despite GPs' beliefs of the benefits of case conferencing, the barriers remain significant. Enabling case conferencing will require support for organisation of case conferences and review of Medicare Benefits Schedule criteria for reimbursement.


Assuntos
Atitude do Pessoal de Saúde , Administração de Caso , Clínicos Gerais/psicologia , Relações Interprofissionais , Cuidados Paliativos/métodos , Cuidados Paliativos/psicologia , Relações Profissional-Família , Adulto , Idoso , Idoso de 80 Anos ou mais , Doença Crônica , Comunicação , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Relações Médico-Paciente , Austrália do Sul , Inquéritos e Questionários
14.
Palliat Med ; 30(4): 409-17, 2016 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-26290500

RESUMO

BACKGROUND: Telehealth technologies are an emerging resource opening up the possibility of greater support if they have utility for patients, carers and clinicians. They may also help to meet health systems' imperatives for improved service delivery within current budgets. Clinicians' experiences and attitudes play a key role in the implementation of any innovation in service delivery. AIM: To explore clinicians' perspectives on and experiences of the utilisation of a pilot telehealth model and its integration into a specialist community palliative care programme. DESIGN: Focus groups and interviews generated data that were analysed through the lens of a realistic evaluation theoretical framework. SETTING/PARTICIPANTS: The study was conducted in a metropolitan specialist palliative care service in South Australia. Participants (n = 10) were clinicians involved in the delivery of community specialist palliative care and the piloting of a telehealth programme. RESULTS: Service providers consider telehealth resources as a means to augment current service provision in a complementary way rather than as a replacement for face-to-face assessments. Introducing this technology, however, challenged the team to critically explore aspects of current service provision. The introduction of technologies also has the potential to alter the dynamic of relationships between patients and families and community palliative care clinicians. CONCLUSION: Implementation of a pilot telehealth programme in a specialist palliative community team needs to involve clinical staff in service redesign from the outset. Reliable IT infrastructure and technical support is critical for telehealth models to be effective and will aid uptake.


Assuntos
Atitude do Pessoal de Saúde , Serviços de Assistência Domiciliar/organização & administração , Cuidados Paliativos/organização & administração , Padrão de Cuidado , Telemedicina/normas , Feminino , Serviços de Assistência Domiciliar/normas , Humanos , Entrevistas como Assunto , Masculino , Modelos Organizacionais , Cuidados Paliativos/métodos , Cuidados Paliativos/normas , Projetos Piloto , Avaliação de Programas e Projetos de Saúde , Pesquisa Qualitativa , Austrália do Sul , Telemedicina/métodos , Comunicação por Videoconferência
15.
BMC Palliat Care ; 15(1): 94, 2016 Nov 17.
Artigo em Inglês | MEDLINE | ID: mdl-27855681

RESUMO

BACKGROUND: Telehealth is being used increasingly in providing care to patients in the community setting. Telehealth enhanced service delivery could offer new ways of managing load and care prioritisation for palliative care patients living in the community. The study assesses the feasibility of a telehealth-based model of service provision for community based palliative care patients, carers and clinicians. METHODS: This study was a prospective cohort study of a telehealth-based intervention for community based patients of a specialist palliative care service living in Southern Adelaide, South Australia. Participants were 43 community living patients enrolled in the Southern Adelaide Palliative Service. To be eligible patients needed to be over 18 years and have an Australian modified Karnofksy Performance Score > 40. Exclusion criteria included a demonstrated inability to manage the hardware or technology (unless living with a carer who could manage the technology) or non-English speaking without a suitable carer/proxy. Participants received video-based conferences between service staff and the patient/carer; virtual case conferences with the patient/carer, service staff and patient's general practitioner (GP); self-report assessment tools for patient and carer; and remote activity monitoring (ACTRN12613000733774). RESULTS: The average age of patients was 71.6 years (range: 49 to 91 years). All 43 patients managed to enter data using the telehealth system. Self-reported data entered by patients and carers did identify changes in performance status leading to changes in care. Over 4000 alerts were generated. Staff reported that videocalls were similar (22.3%) or better/much better (65.2%) than phone calls and similar (63.1%) or better/much better (27.1%) than face-to-face. Issues with the volume of alerts generated, technical support required and the impact of service change were identified. CONCLUSIONS: The trial showed that patients and carers could manage the technology and provide data that would otherwise not have been available to the palliative care service. TRIAL REGISTRATION: Australian New Zealand Clinical Trials Registry ACTRN12613000733774 registered on 02/07/2013.


Assuntos
Serviços de Saúde Comunitária/métodos , Telemedicina , Assistência Terminal/métodos , Estudos de Viabilidade , Feminino , Serviços de Assistência Domiciliar/normas , Humanos , Masculino , Modelos Organizacionais , Cuidados Paliativos/métodos , Cuidados Paliativos/normas , Avaliação de Programas e Projetos de Saúde , Estudos Prospectivos , Austrália do Sul/epidemiologia , Padrão de Cuidado , Assistência Terminal/normas
16.
J Palliat Med ; 26(2): 270-298, 2023 02.
Artigo em Inglês | MEDLINE | ID: mdl-36251853

RESUMO

Background: Hospital-to-home transitions become more frequent and complex as people approach end of life. Although carers are critical to enabling these transitions, they report high levels of unmet need. A review of the interventions to assist these care transitions, along with understanding those intervention components and mechanisms that support carers of people with advanced illness, is required to inform an optimal care model for palliative care practice. Aim: To describe the characteristics and reporting quality of intervention studies aimed at improving hospital-to-home transitions for carers of people with advanced illness. Design: This is a systematic review with a narrative synthesis. (international prospective register of systematic reviews [PROSPERO] ID: CRD42020192088). Data Sources: MEDLINE, EMCare, and PsychINFO databases were searched (2000-2021) for prospective studies reporting on interventions that (1) aimed to improve hospital-to-home transitions and (2) targeted carers of people with advanced illness. The Template for Intervention Description and Replication (TIDieR) checklist and constructs of the Care Transition Framework were used to assess the reporting quality of intervention design, delivery, and outcomes. Results: In total, 37 articles were analyzed that included a range of study designs, interventions, and outcomes. Health care utilization (n = 29) and clinical patient-related (n = 21) measures were the most reported outcome. Theoretical discussion was minimal (n = 5) with most studies using efficacy data from past research to justify intervention choice. Conclusion: Carers are critical partners in hospital-to-home transitions at end of life; yet they are largely under-represented in intervention design, delivery, and outcomes. Improving the reporting quality of carer-focused care transition interventions will inform future study design and support translation into practice and policy.


Assuntos
Cuidadores , Hospitais , Humanos , Transferência de Pacientes , Estudos Prospectivos
17.
Healthcare (Basel) ; 10(6)2022 May 29.
Artigo em Inglês | MEDLINE | ID: mdl-35742056

RESUMO

Ongoing participation in valued and essential everyday activities remains a priority for people with advanced disease. This study sought to understand factors influencing patients with advanced disease and caregivers' utilisation of assistive equipment that enable this participation. Employing a pragmatic approach, purposive sampling identified participants who were interviewed in their homes. A semi-structured interview guide was employed to elicit community dwelling patients' and caregivers' perspectives about assistive equipment utilisation. Recorded interviews were analysed inductively and themes were constructed from the data. Fourteen interviews were conducted with patients and caregivers. Patients had a range of cancers and COPD. Three empirically developed themes demonstrate the complexities associated with the use of assistive equipment at the end of life: 1. Enabling engagement in everyday activities; 2. Dependency-a two-way street; 3. The pragmatics of choosing, using or declining assistive equipment. Participants were motivated to use assistive equipment when it optimised their function, enabled participation and supported their values, roles and interests. Conversely, use of assistive equipment could be met with ambivalence as it represented deterioration or could cause conflict within relationships. Caregivers found assistive equipment made it easier for them to provide physical care. Skilled proactive assistive equipment prescription and training by allied health professionals enhanced patient and caregiver confidence and capacity to engage in everyday activities.

18.
Aust J Prim Health ; 27(4): 338, 2021 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-34353434

RESUMO

This study assessed Australian clinical practice guidelines for life-limiting index conditions for the extent to which they acknowledged comorbidities and framed management recommendations within the context of older age and reduced life expectancy. A comprehensive search identified current, evidence-based Australian guidelines for chronic life-limiting conditions directed at general practitioners. Guideline content was analysed qualitatively before comorbidity acknowledgements were quantified using a 17-item checklist. Full guidelines were quality appraised using AGREE-II. Ten documents covering chronic obstructive pulmonary disease, heart failure, cancer pain, dementia and palliative care in aged care were identified. Most guidelines addressed one 'comorbid' condition and prompted clinicians to consider patient quality of life and personal preferences. Fewer addressed burden of treatment and half suggested modifying treatments to account for limited life expectancy, age or time horizon to benefit. Half warned of potential adverse drug interactions. Guidelines were of moderate to very high quality. Guidelines naturally prioritised their index condition, directing attention to only the most common comorbidities. However, there may be scope to include more condition-agnostic guidance on multimorbidity management. This might be modelled on the 'guiding principles' approach now emerging internationally from organisations such as the American Geriatrics Society in response to increasing multimorbidity prevalence and evidence limitations.


Assuntos
Multimorbidade , Qualidade de Vida , Idoso , Austrália/epidemiologia , Comorbidade , Humanos , Guias de Prática Clínica como Assunto , Atenção Primária à Saúde
19.
Aust J Prim Health ; 2021 Jan 19.
Artigo em Inglês | MEDLINE | ID: mdl-33461658

RESUMO

This study assessed Australian clinical practice guidelines for life-limiting index conditions for the extent to which they acknowledged comorbidities and framed management recommendations within the context of older age and reduced life expectancy. A comprehensive search identified current, evidence-based Australian guidelines for chronic life-limiting conditions directed at general practitioners. Guideline content was analysed qualitatively before comorbidity acknowledgements were quantified using a 17-item checklist. Full guidelines were quality appraised using AGREE-II. Ten documents covering chronic obstructive pulmonary disease, heart failure, cancer pain, dementia and palliative care in aged care were identified. Most guidelines addressed one 'comorbid' condition and prompted clinicians to consider patient quality of life and personal preferences. Fewer addressed burden of treatment and half suggested modifying treatments to account for limited life expectancy, age or time horizon to benefit. Half warned of potential adverse drug interactions. Guidelines were of moderate to very high quality. Guidelines naturally prioritised their index condition, directing attention to only the most common comorbidities. However, there may be scope to include more condition-agnostic guidance on multimorbidity management. This might be modelled on the 'guiding principles' approach now emerging internationally from organisations such as the American Geriatrics Society in response to increasing multimorbidity prevalence and evidence limitations.

20.
J Palliat Med ; 24(3): 331-337, 2021 03.
Artigo em Inglês | MEDLINE | ID: mdl-33085551

RESUMO

Qualitative methodologies have multiple contributions to health research, including improving baseline understanding in new areas of enquiry; questioning existing assumptions; understanding viewpoints of specific subgroups; and offering complex, contextual information. While the role of qualitative research within mixed methods approaches is well documented, the contribution to clinical trial design and conduct is less well recognized. The Australian Palliative Care Clinical Studies Collaborative and Cancer Symptom Trials have developed a framework to detail how qualitative research might contribute to each key aspect of clinical trials. This practical framework provides real-world examples, including sample qualitative questions, to consider at each phase of controlled clinical trial development. As the number of randomized clinical trials in palliative care increases, a readily accessible approach to integrating qualitative research into clinical trial design and conduct is needed so that its full potential for improving study recruitment, conduct, outcomes, interpretation, and implementation may be realized.


Assuntos
Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Neoplasias , Austrália , Humanos , Cuidados Paliativos , Pesquisa Qualitativa
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