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1.
Health Expect ; 27(2): e14026, 2024 Apr.
Artículo en Inglés | MEDLINE | ID: mdl-38618991

RESUMEN

BACKGROUND: Awareness and understanding of dementia remain limited in ethnically diverse populations in multicultural societies due to culturally inappropriate and inaccessible information. OBJECTIVE: To establish the impact, helpers and hinderers of an online multilingual dementia awareness initiative co-created with and for English, Arabic and Vietnamese speaking people. DESIGN: A case study using mixed methods to assess the impact and implementation of an information session on dementia knowledge. SETTING AND PARTICIPANTS: The study was conducted with English, Arabic and Vietnamese speaking individuals in Canterbury-Bankstown, Australia. INTERVENTION STUDIED: A dementia alliance co-created an online multilingual dementia information session, which was delivered synchronously in English, Arabic and Vietnamese by trained facilitators. MAIN OUTCOME MEASURES: In-session group discussions, quizzes and a postsession survey assessed the impact on dementia knowledge. A postimplementation focus group explored the factors that helped and hindered the initiative. RESULTS: The online dementia information session successfully supported participants understanding of dementia causes, impacts and care strategies. The initiative was hindered by competing priorities and limited accessibility to target audiences, while it was helped by the support of an established organisation and feedback mechanisms. DISCUSSION: Ongoing dementia education and awareness-raising campaigns that are culturally sensitive are needed in communities to promote dementia literacy and help-seeking. CONCLUSIONS: An online multilingual dementia information session can be an effective way to improve dementia literacy and advocate for change in multicultural communities. PATIENT OR PUBLIC CONTRIBUTION: English, Arabic and Vietnamese speaking members of the Canterbury Bankstown Dementia Alliance participated in the co-creation and evaluation of this initiative.


Asunto(s)
Diversidad Cultural , Demencia , Humanos , Vietnam , Australia , Educación Continua
2.
Palliat Support Care ; : 1-6, 2024 Apr 08.
Artículo en Inglés | MEDLINE | ID: mdl-38587044

RESUMEN

OBJECTIVES: Family involvement in the lives of people who have dementia and live in long-term care is important, but family members may face challenges communicating and connecting with their loved one as dementia progresses. A type of therapeutic humor (Laughter Care) delivered by trained specialists aims to engage people with dementia who reside in long-term care through creative play and laughter. This study aimed to explore the perceptions of Laughter Care Specialists (LCSs) regarding families' engagement with the program. METHODS: Semi-structured interviews were conducted with LCSs (n = 8) and analyzed inductively using thematic analysis. RESULTS: Family members were reported to initially have varied degrees of openness toward Laughter Care, but often become more accepting after observing positive engagement with the person with dementia. Family members were perceived to benefit from the program through witnessing the person with dementia enjoy joyous and light interactions, learn new ways of communicating and connecting with the person with dementia, and engage in positive interactions at end of life. SIGNIFICANCE OF RESULTS: Laughter Care may provide family members with novel ways of communicating and connecting with people who have dementia at end of life as well as comfort into bereavement.

4.
J Pain Symptom Manage ; 67(2): 147-156, 2024 Feb.
Artículo en Inglés | MEDLINE | ID: mdl-37972719

RESUMEN

BACKGROUND: Australian COVID-19 public health measures reduced opportunities for people to communicate with healthcare professionals and be present at the death of family members/friends. AIM: To understand if pandemic-specific challenges and public health measures during the COVID-19 pandemic impacted end-of-life and bereavement experiences differently if the death, supported by palliative care, occurred in a hospital or at home. DESIGN: A cross-sectional online survey was completed by bereaved adults during 2020-2022. Analyses compared home and in-patient palliative care deaths and bereavement outcomes. Additional analyses compared health communication outcomes for those identified as persons responsible or next of kin. SETTING/PARTICIPANTS: Of 744 bereaved people; 69% (n = 514) had a death in hospital and 31% (n = 220) at home. RESULTS: The COVID-19 public health measures influenced people's decision to die at home. Compared to hospital deaths, the home death group had higher levels of grief severity and grief-related functional impairment. Only 37% of bereaved people received information about bereavement and support services. 38% of participants who were at least 12 months postdeath scored at a level suggestive of possible prolonged grief disorder. Levels of depression and anxiety between the two groups were not significantly different. CONCLUSIONS: These findings highlight the need for health services to recognize bereavement as fundamental to palliative and health care and provide pre- and post death grief and bereavement care to ensure supports are available particularly for those managing end-of-life at home, and that such supports are in place prior to as well as at the time of the death.


Asunto(s)
Aflicción , COVID-19 , Adulto , Humanos , Cuidados Paliativos , Pandemias , Estudios Transversales , Australia/epidemiología , Pesar , Familia , Hospitales , Muerte
5.
Int J Nurs Stud ; 150: 104644, 2024 Feb.
Artículo en Inglés | MEDLINE | ID: mdl-38016267

RESUMEN

BACKGROUND: Unclear illness perceptions are common in heart failure. The self-regulation model of illness behaviour highlights factors that may impact how people with chronic illness choose to cope with or manage their condition and has been used to study pre-hospital delay for stroke and acute myocardial infarction. The principles of self-regulation can be applied in heart failure to help illuminate the link between unclear illness perceptions and sub-optimal symptom self-management. OBJECTIVE: Informed by the self-regulation model of illness behaviour, this study examines the role of illness perceptions in coping responses that lead to delayed care-seeking for heart failure symptoms. DESIGN: Mixed-methods phenomenological study. SETTING(S): Quaternary referral hospital - centre of excellence for cardiovascular care and heart transplantation. PARTICIPANTS: Seventy-two symptomatic patients with heart failure participated in a survey assessing illness perceptions. A subset of fifteen individuals was invited to participate in semi-structured interviews. METHODS: Illness perceptions were assessed using the Brief Illness Perception Questionnaire. In-depth semi-structured interviews were conducted to elicit previous care-seeking experiences and decision-making that led to a passive, or active coping response to worsening symptoms. Descriptive statistics were used to report questionnaire findings, and open-ended responses were grouped into descriptive categories. Interpretative phenomenological analysis was undertaken on interview transcripts. RESULTS: Participants perceived little personal control over their condition and mostly attributed heart failure to lifestyle factors such as diet and lack of activity. Cognitive dissonance between perceived self-identity and heart failure-identity led to a highly emotional response which drove coping towards avoidance strategies and denial. CONCLUSIONS: This study demonstrates the use of the principles of self-regulation in heart failure and offers a framework to understand how patient representations and emotional responses can inform behaviour in illness. Findings highlight the value of empowering patients to take control of their health and the need to help align values (e.g. independence) with behaviours (e.g. actively addressing problems) to facilitate optimal symptom self-management.


Asunto(s)
Adaptación Psicológica , Insuficiencia Cardíaca , Humanos , Insuficiencia Cardíaca/terapia , Insuficiencia Cardíaca/psicología , Aceptación de la Atención de Salud/psicología , Emociones , Encuestas y Cuestionarios , Investigación Cualitativa
6.
Heart Lung Circ ; 32(12): 1426-1433, 2023 Dec.
Artículo en Inglés | MEDLINE | ID: mdl-38030470

RESUMEN

OBJECTIVE: There is considerable burden of anxiety, depression, and post-traumatic stress disorder in patients with spontaneous coronary artery dissection (SCAD), yet research is limited on the experience and impact of SCAD from the patient perspective. This literature review sought to describe the current state of the literature on the patient experience of SCAD and consequences for patients following a SCAD event from the patient perspective. To better understand how people's experiences of SCAD affect their wellbeing, quality of life, lifestyles, and identity, and what would be useful from the patient perspective, an integrative review was performed. METHODS: An integrative literature review was conducted to understand the experience of SCAD and the post-event implications. Five databases were searched. Search terms included 'spontaneous coronary artery dissection', 'SCAD', 'patient', 'experience', 'perspective', and 'opinion'. English-language, peer-reviewed primary research in people with a diagnosis of SCAD that reflected the patient experience was included. Data indicating the SCAD experience including distress prevalence were extracted into an Excel spreadsheet, and narrative synthesis of included studies followed. FINDINGS: From 325 identified studies, five were included for review, yielding a combined sample of 447 participants. Patients with SCAD reported a lack of information about SCAD and the recovery process, and use of the internet for obtaining information. Patients with SCAD reported challenges in recovery including anxiety associated with fear of recurrence and uncertainty, and a need for greater support. A wide range of negative emotions was reported during and after the SCAD event. Participants reported participating in support groups, with mixed reviews of their appropriateness and effectiveness.


Asunto(s)
Anomalías de los Vasos Coronarios , Enfermedades Vasculares , Humanos , Vasos Coronarios , Calidad de Vida , Enfermedades Vasculares/diagnóstico , Enfermedades Vasculares/epidemiología , Anomalías de los Vasos Coronarios/diagnóstico , Anomalías de los Vasos Coronarios/epidemiología , Anomalías de los Vasos Coronarios/complicaciones , Evaluación del Resultado de la Atención al Paciente , Angiografía Coronaria
8.
BMC Palliat Care ; 22(1): 69, 2023 Jun 08.
Artículo en Inglés | MEDLINE | ID: mdl-37291537

RESUMEN

Palliative care is increasingly important in the prison setting, but information about the quality and accessibility of this care is extremely limited. Developing and implementing standardised quality indicators will provide transparency, accountability, and a platform for quality improvement at both local and national levels.


Asunto(s)
Enfermería de Cuidados Paliativos al Final de la Vida , Cuidados Paliativos , Humanos , Prisiones , Indicadores de Calidad de la Atención de Salud
9.
J Cardiovasc Nurs ; 38(5): 492-510, 2023.
Artículo en Inglés | MEDLINE | ID: mdl-37249544

RESUMEN

BACKGROUND: Comorbid depression and/or anxiety symptoms occur in 25% of patients attending cardiac rehabilitation (CR) programs and are associated with poorer prognosis. There is a need to evaluate psychological interventions, including meditation, that have potential to improve psychological health in CR programs. AIMS: The aim of this study was to determine the feasibility and acceptability of integrating a meditation intervention into an existing Australian CR program for the reduction of depression and anxiety symptoms. METHODS: This was a mixed-methods feasibility randomized controlled trial. Thirty-one patients with CVD and, at a minimum, mild depression and/or anxiety symptoms were randomized to meditation and standard CR or to standard CR alone. A 16-minute guided group meditation was delivered face-to-face once a week for 6 weeks, with daily self-guided meditation practice between sessions. Feasibility outcomes included screening, recruitment, and retention. Semistructured interviews of patients' (n = 10) and health professionals' (n = 18) perspectives of intervention participation and delivery were undertaken to assess acceptability. Between-group differences in depression, anxiety, stress, self-efficacy for mindfulness, and health status at 6 and 12 weeks were also assessed. RESULTS AND CONCLUSION: Meditation was considered feasible, with 83% (12/15) of the intervention group completing an average of 3.13 (SD, 2.56) out of 6 group meditation sessions and 5.28 (SD, 8.50) self-guided sessions. Meditation was considered acceptable by patients, clinicians, and health managers. Between-group differences in the number of CR sessions completed favored the intervention group in per-protocol analyses (intervention group vs control group, 12 vs 9 sessions; P = .014), which suggests that meditation may be useful to improve patients' adherence to exercise-based CR program.


Asunto(s)
Cardiopatías , Meditación , Humanos , Meditación/métodos , Estudios de Factibilidad , Mentores , Australia
10.
Chronic Illn ; 19(1): 208-220, 2023 03.
Artículo en Inglés | MEDLINE | ID: mdl-34758671

RESUMEN

OBJECTIVE: To examine sociodemographic characteristics and caring experiences associated with being an older rather than younger carer of an adult with a chronic health condition. METHODS: The population-based cross-sectional South Australian Health Omnibus survey was administered in 2016. Multiple logistic regression was used to identify sociodemographic characteristics and caring experiences associated with being an older (≥65 years) versus younger (<65 years) carer of one or more adult(s) with a chronic health condition. RESULTS: Of 988 survey respondents who self-identified as carers, 198(20%) were 65 years or over. Characteristics associated with being an older carer included having a partner, having poor physical health, being born outside Australia, have no formal qualification, living in a household of 1-2 people, have an annual household income ≤$60,000, and owning one's home. Carer experiences associated with older carer status included providing ≥40 h of care per week, perceived control over caring, and caring for someone with a neurological condition, whereas caring for someone with a mental illness, reporting poor mental health of their own, and providing personal care were inversely associated. DISCUSSION: Interventions directed at older carers should consider the increased likelihood that they may be investing large amounts of time in caring for someone with a neurological condition, and be culturally and linguistically diverse.


Asunto(s)
Cuidadores , Trastornos Mentales , Adulto , Humanos , Australia del Sur , Cuidadores/psicología , Australia , Estudios Transversales , Trastornos Mentales/psicología
11.
Palliat Med ; 37(4): 543-557, 2023 04.
Artículo en Inglés | MEDLINE | ID: mdl-36114642

RESUMEN

BACKGROUND: For informal carers of people with life-limiting illness, social welfare policy related to income support and housing has been associated with varied psychosocial issues, yet remains relatively under-explored. An intersectional approach offers potential to illuminate diverse experiences and implications. AIM: To explore the way in which caring in the context of life-limiting illness is framed within welfare policy, to articulate inequities encountered by carers, and to identify policy and practice recommendations. DESIGN: The Intersectionality-Based Policy Analysis (IBPA) Framework was used to situate findings of a broader qualitative study. SETTING/PARTICIPANTS: Data were collected via semi-structured interviews with participants who were bereaved carers (n = 12), welfare workers (n = 14) and palliative care workers (n = 7), between November 2018 and April 2020, in an Australian region associated with socioeconomic disadvantage. Five elements of IBPA were applied to the products of analysis of this data. RESULTS: Use of the IBPA Framework revealed that representations of carers and causes of their welfare needs in policy were underpinned by several assumptions; including that caring and grieving periods are temporary or brief, and that carers have adequate capacity to navigate complex systems. Policy and processes had differentiated consequences for carers, with those occupying certain social locations prone to accumulating disadvantage. CONCLUSIONS: This intersectional analysis establishes critical exploration of the framing and consequences of welfare policy for carers of people with life-limiting illness, presented in a novel conceptual model. Implications relate to intersectoral development of structural competency, responsiveness to structurally vulnerable carers in clinical practice, and needed policy changes.


Asunto(s)
Aflicción , Cuidadores , Humanos , Cuidadores/psicología , Marco Interseccional , Australia , Política Pública , Investigación Cualitativa , Formulación de Políticas , Apoyo Social
12.
J Palliat Care ; 37(4): 535-544, 2022 Oct.
Artículo en Inglés | MEDLINE | ID: mdl-36083631

RESUMEN

Objective: To ascertain palliative physicians' and consultation-liaison psychiatrists' perceptions of depression care processes in patients with very poor prognoses, exploring key challenges and postulating solutions. Methods: A qualitative focus group study involving three 1-h online focus groups (2 palliative medicine and 1 psychiatry) were conducted between November-December 2020. Fellows and trainees were recruited from Australian and New Zealand Society of Palliative Medicine (n = 11) and Royal Australian and New Zealand College of Psychiatrists (n = 4). Data underwent conventional qualitative content analysis. Results: Participants perceived depression care to be complex and challenging. Perceived barriers included: inadequate palliative care psychiatry skills with variation in clinical approaches; lack of supportive health infrastructure (poor access to required interventions and suboptimal linkage between palliative care and psychiatry); lack of research support; and societal stigma. Suggested solutions included integrating care processes between palliative care and psychiatry to improve clinician training, establish supportive health systems and promote innovative research designs. Conclusions: Developing clinician training, supportive health systems and innovative research strategies centering on integrating palliative care and psychiatry care processes may be integral to optimising depression care when providing care to people with very poor prognoses.


Asunto(s)
Médicos , Psiquiatría , Australia , Depresión/terapia , Grupos Focales , Humanos , Cuidados Paliativos , Derivación y Consulta
13.
Health Soc Care Community ; 30(6): e4450-e4460, 2022 11.
Artículo en Inglés | MEDLINE | ID: mdl-35611693

RESUMEN

Preliminary research suggests that meditation may provide benefits in psychological health and well-being in people with cardiovascular disease (CVD). However, little is known about health professionals' perceptions of the barriers and facilitators to integrating meditation into CVD. A descriptive qualitative study design with semi-structured interviews was used to explore the acceptability of integrating meditation into outpatient CVD programs and the organisational factors that may affect its integration. Clinicians were recruited through purposive and snowball sampling. E-mail addresses were obtained from publicly listed profiles of cardiovascular and relevant health organisations. Interview questions included perspectives of organising or delivering meditation within a health setting, format of meditation delivery, organisational or other factors that facilitate or present barriers to integrating meditation into clinical practice, and perceived risks associated with integrating meditation in clinical settings. Verbatim transcripts were thematically analysed using an inductive approach and the Braun and Clarke (2006) method to identify themes within barriers and facilitators to implementation. Eighteen predominately female (61%) senior nursing and medical professionals (61%), as well as health managers (17%), psychologists (11%) and allied health professionals (11%), aged 40-60 years were interviewed between 18 May 2017 and 29 March 2018 in Australia via telephone, or face-to-face at a university or the participants' workplace. Three key themes were identified including: enhancing awareness of meditation within a biomedical model of care, building the evidence for meditation in CVD and finding an organisational fit for meditation in cardiovascular care. Meditation was perceived to sit outside the existing health service structure, which prioritised the delivery of medical care. Health professionals perceived that some physicians did not recognise the potential for meditation to improve cardiovascular outcomes while others acknowledged meditation's positive benefits as a safe, low-cost strategy. The benefits of meditation were perceived as subjective, based on preliminary evidence. Health professionals perceived that aligning meditation with health organisational objectives and integrating meditation into outpatient cardiac rehabilitation and community-based secondary prevention pathways is needed. A fully powered clinical trial is required to strengthen the evidence regarding the role of meditation for psychological health in CVD. Generating clinician engagement and support is necessary to enhance awareness of meditation's use in cardiovascular secondary prevention.


Asunto(s)
Enfermedades Cardiovasculares , Meditación , Humanos , Femenino , Personal de Salud/psicología , Investigación Cualitativa , Técnicos Medios en Salud , Enfermedades Cardiovasculares/prevención & control
14.
Asia Pac J Clin Oncol ; 18(6): 723-734, 2022 Dec.
Artículo en Inglés | MEDLINE | ID: mdl-35362249

RESUMEN

OBJECTIVES: Given the importance of supporting cancer patients to quit smoking, we sought to ascertain cancer care clinicians' beliefs and practices regarding providing smoking cessation brief interventions. METHODS: We used a cross-sectional sequential explanatory mixed method design, including a survey of multidisciplinary cancer care clinicians and semistructured interviews. RESULTS: One hundred and sixty-five cancer care clinicians completed the survey and 21 participated in interviews. Over half of survey respondents (53%) said they do not regularly undertake smoking cessation brief interventions and 40% rarely or never advise quitting. Nonmetropolitan clinicians were more likely to discuss medication options and refer to the Quitline. Physicians were more likely to do brief interventions with patients and radiation therapists were least likely. Barriers were lack of training and experience, lack of knowledge of the Quitline referral process, lack of role clarity, lack of resources and systems, and perceived psychological ramifications of cancer for patients. CONCLUSION: There is a need to upskill cancer clinicians and improve systems to provide smoking cessation brief interventions as part of routine clinical practice. All cancer care clinicians should complete brief intervention smoking cessation training relevant to the cancer context, including making referrals to Quitline, and be supported by systems to record and follow-up care.


Asunto(s)
Neoplasias , Cese del Hábito de Fumar , Humanos , Cese del Hábito de Fumar/métodos , Cese del Hábito de Fumar/psicología , Nueva Gales del Sur/epidemiología , Estudios Transversales , Fumar , Australia/epidemiología , Neoplasias/terapia
15.
BMC Palliat Care ; 21(1): 11, 2022 Jan 16.
Artículo en Inglés | MEDLINE | ID: mdl-35034640

RESUMEN

BACKGROUND: Depression is prevalent in people with very poor prognoses (days to weeks). Clinical practices and perceptions of palliative physicians towards depression care have not been characterised in this setting. The objective of this study was to characterise current palliative clinicians' reported practices and perceptions in depression screening, assessment and management in the very poor prognosis setting. METHODS: In this cross-sectional cohort study, 72 palliative physicians and 32 psychiatrists were recruited from Australian and New Zealand Society of Palliative Medicine and Royal Australian and New Zealand College of Psychiatrists between February and July 2020 using a 23-item anonymous online survey. RESULTS: Only palliative physicians results were reported due to poor psychiatry representation. Palliative physicians perceived depression care in this setting to be complex and challenging. 40.0% reported screening for depression. All experienced uncertainty when assessing depression aetiology. Approaches to somatic symptom assessment varied. Physicians were generally less likely to intervene for depression than in the better prognosis setting. Most reported barriers to care included the perceived lack of rapidly effective therapeutic options (77.3%), concerns of patient burden and intolerance (71.2%), and the complexity in diagnostic differentiation (53.0%). 66.7% desired better collaboration between palliative care and psychiatry. CONCLUSIONS: Palliative physicians perceived depression care in patients with very poor prognoses to be complex and challenging. The lack of screening, variations in assessment approaches, and the reduced likelihood of intervening in comparison to the better prognosis setting necessitate better collaboration between palliative care and psychiatry in service delivery, training and research.


Asunto(s)
Cuidados Paliativos , Médicos , Australia , Estudios Transversales , Depresión/terapia , Humanos , Encuestas y Cuestionarios
16.
Health Soc Care Community ; 30(4): 1213-1232, 2022 07.
Artículo en Inglés | MEDLINE | ID: mdl-34761456

RESUMEN

The purpose of this systematic review and synthesis of studies reporting qualitative data was to understand the gendered experiences of female partners of prostate cancer survivors to inform psychosocial support for women. We searched Medline, PsycINFO, EMBASE, AMED, CINAHL, Cochrane Database of Systematic Reviews, and Sociological Abstracts for articles on 15 and 16 April 2019, and again on 30 November 2020. English language articles published in peer-reviewed journals were included if they reported solely on findings describing the perspectives of the female partners. Extracted data were analysed using line-by-line coding, organisation of codes into descriptive themes, and development of analytical themes. A theoretical framework was then selected to organise the relationships between issues that were found to be central to the experiences of female partners. Of 4839 articles screened, 14 met inclusion criteria, reporting 13 studies with a total sample of 359 female partners. Ussher and Sandoval's theory to describe the gendered positionings of cancer caregivers accommodated the thematic findings. The overarching theme reflected the substantive psychosocial impact of prostate cancer on female partners. Women's experiences were influenced by self-positioning (as part of a couple; provider of support to their male partner; resilient; and guided by faith and spirituality), being positioned by their partners' response (manager of male partner's psychological distress or strengthened by male partner's positive response) and by their broader contexts (family members and social networks; clinicians and the health system; and cultural values and customs). Findings highlight the need to avoid reductionist approaches to gender. Greater consideration of 'contextualised femininities', or conceptualising the influence of gender roles, relations, and identities within the wider life course contexts of female partners is required in the design and delivery of psychosocial support services.


Asunto(s)
Supervivientes de Cáncer , Neoplasias de la Próstata , Familia , Humanos , Masculino , Próstata , Neoplasias de la Próstata/terapia , Investigación Cualitativa
17.
Chronic Illn ; 18(3): 562-573, 2022 09.
Artículo en Inglés | MEDLINE | ID: mdl-33673738

RESUMEN

OBJECTIVES: To ascertain a comprehensive perspective of the impact of peripheral arterial disease (PAD) on people including needs for access to disease specific information, education, services, and support. METHODS: Participants were recruited from outpatient clinics at a tertiary hospital in metropolitan Australia. Telephone and face-to-face semi-structured interviews were conducted with nine individuals living with PAD and analysed using qualitative content thematic analysis. RESULTS: The nine participants were on average 74.2 (SD 10.9) years and predominantly women (67%). Lack of understanding of PAD and inconsistent information resulted in confusion regarding self-management strategies. Effects of pain and mobility problems were amplified for participants who lived alone and did not have an informal carer. DISCUSSION: Poor quality of life in PAD reflects pain, social isolation and fear of falls. Multidisciplinary teams with case managers should consider older people's living situations and needs for additional support services and education to facilitate integrated care.


Asunto(s)
Enfermedad Arterial Periférica , Calidad de Vida , Anciano , Cuidadores , Femenino , Humanos , Masculino , Dolor , Investigación Cualitativa
18.
Palliat Med ; 36(3): 443-461, 2022 03.
Artículo en Inglés | MEDLINE | ID: mdl-34965778

RESUMEN

BACKGROUND: Globally, the prison population is growing and ageing, as is the need for palliative care. Yet, little is known about how people in prison perceive palliative care provision in this setting. AIMS: To identify the: (i) perceptions of palliative care provision and dying in custody by people in prison; and (ii) perceived barriers and facilitators of person-centred palliative care provision in prison. DESIGN: A systematic review and meta-synthesis was registered and undertaken in accordance with the reporting guidelines. DATA SOURCES: Keywords and MeSH headings encompassing (i) palliative care, end-of-life care, death; and (ii) prison; were used to search Pubmed, Medline, CINAHL, PsycINFO, Web of Science, CINCH and ProQuest Central. Articles published in English, from high income countries, and containing qualitative data exploring perceptions of people in prison of palliative care in custody were included. Findings were reporting using the ENTREQ guidelines. FINDINGS: Of the 2193 articles identified, 12 were included. Experiences of people in prison regarding palliative care related to two themes: (1) expectations versus experiences of palliative care; and (2) prison context complicates access to and provision of palliative care. People in prison with palliative care needs want to feel safe, cared for, and acknowledged as they face an expected death. The prison environment can severely restrict access to palliative care, leaving people in prison feeling isolated and powerless. CONCLUSIONS: People in prison expect to receive high-quality palliative care, but their experiences often do not match their expectations. Numerous structural and organisational challenges complicate the provision of palliative care in prisons, limiting accessibility of care.


Asunto(s)
Cuidados Paliativos al Final de la Vida , Enfermería de Cuidados Paliativos al Final de la Vida , Cuidado Terminal , Humanos , Cuidados Paliativos , Prisiones
19.
Qual Health Res ; 32(1): 64-79, 2022 01.
Artículo en Inglés | MEDLINE | ID: mdl-34836471

RESUMEN

Caring for and bereavement following the death of someone with a life-limiting illness may precipitate social welfare needs related to income support and housing. Nevertheless, carer experiences of welfare policy and institutions have not received significant attention. This qualitative study explored experiences of carers who navigated social welfare policy while caring for someone with a life-limiting illness, and in bereavement. In-depth interviews were conducted with 12 bereaved carers in an area associated with socioeconomic disadvantage. Carers differentially encountered precariousness, with some experiencing structural vulnerability. These positionalities appeared to be shaped by policy and process-related burdens, perceptions of the welfare state, and degrees of legitimisation or disenfranchisement of forms of capital and coping orientations. Recommendations that may improve carer experience were identified. Implications relate to the need for an expanded conceptualisation of vulnerability in health and welfare practice, policy that authentically validates caring and grieving, and upstream strategies that address inequity.


Asunto(s)
Aflicción , Cuidadores , Australia , Humanos , Cuidados Paliativos , Investigación Cualitativa , Apoyo Social , Bienestar Social
20.
Heart Lung Circ ; 30(12): 1891-1900, 2021 Dec.
Artículo en Inglés | MEDLINE | ID: mdl-34219025

RESUMEN

BACKGROUND: Cardiac rehabilitation (CR) programs reduce the risk of further cardiac events and improve the ability of people living with cardiovascular disease to manage their symptoms. However, many people who experience a cardiac event do not attend or fail to complete their CR program. Little is known about the characteristics of people who drop out compared to those who complete CR. AIMS: To identify subgroups of patients attending a cardiac rehabilitation program who are more likely to dropout prior to final assessment by (1) calculating the dropout rate from the program, (2) quantifying the association between dropout and socio-demographic, lifestyle, and cardiovascular risk factors, and (3) identifying independent predictors of dropout. METHODS: The study population is from a large metropolitan teaching hospital in Sydney, Australia, and consists of all participants consecutively enrolled in an outpatient CR program between 2006 and 2017. Items assessed included diagnoses and co-morbidities, quality of life (SF-36), psychological health (DASS-21), lifestyle factors and physical assessment. Dropout was defined as failure to complete the outpatient CR program and post CR assessment. RESULTS: Of the 3,350 patients enrolled in the CR program, 784 (23.4%; 95%CI: 22.0-24.9%) dropped out prior to completion. The independent predictors of dropout were smoking (OR 2.4; 95%CI: 1.9-3.0), being separated or divorced (OR 2.0; 95%CI: 1.5-2.6), younger age (<55 years) (OR 1.9; 95%CI: 1.6-2.4), obesity (OR 1.6; 95%CI: 1.3-2.0), diabetes (OR 1.6; 95%CI: 1.3-2.0), sedentary lifestyle (OR 1.3; 95%CI: 1.1-1.6) and depressive symptoms (OR 1.3; 95%CI: 1.1-1.6). CONCLUSION: To improve the CR program completion rate, clinicians need to consider the impact of socio-demographic, lifestyle, and cardiovascular risk factors on their patients' ability to complete CR. Tailored strategies which target the independent predictors of dropout are required to promote adherence to CR programs and thereby potentially reduce long-term cardiovascular risk.


Asunto(s)
Rehabilitación Cardiaca , Enfermedades Cardiovasculares , Australia/epidemiología , Enfermedades Cardiovasculares/epidemiología , Enfermedades Cardiovasculares/prevención & control , Factores de Riesgo de Enfermedad Cardiaca , Humanos , Estilo de Vida , Estudios Longitudinales , Persona de Mediana Edad , Calidad de Vida , Factores de Riesgo
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