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1.
Aust Occup Ther J ; 71(4): 565-577, 2024 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-38499502

RESUMO

INTRODUCTION: While Singapore is rapidly ageing and the need for palliative care services is projected to rise, there has been limited exploration of the occupations of Chinese older adults with life-limiting conditions. This study is the third in a series of three studies aimed to address this issue. This study also sought to discuss future directions for occupational therapy practice with Chinese older adults living with life-limiting illnesses in Singapore. METHOD: The study adopted a qualitative exploratory design using focus groups. Participants were recruited using convenience and snowball sampling. Inclusion criteria were occupational therapists who had attained full registration status with the Allied Health Professionals Council in Singapore, had two or more years of practice as an occupational therapist, and had a current or recent palliative care caseload. FINDINGS: Three focus groups with 16 participants were conducted, and three themes were constructed from the data through reflexive thematic analysis. Reflections on culture and occupations is about the impact of a collectivist culture on occupations, such as tensions new caregivers experience between keeping clients safe and respecting clients' choices. It also highlights that there will always be individual differences within any cultural group. Challenges of occupational therapy practice in palliative care describe the need for therapists to be comfortable with rest and ethical tensions participants faced with billing for sessions that mainly involved time spent conversing with clients and when clients and caregivers' goals differed. Finally, Moving forward is about the importance of having mentors and the learning needs of occupational therapists in palliative care. CONCLUSION: Occupational therapists experienced in providing services to palliative care clients in Singapore emphasised the collectivist nature of Singaporean Chinese families and contributed more information to its possible impact on occupations and occupational therapy practice and made suggestions for future practice.


Assuntos
Terapia Ocupacional , Idoso , Idoso de 80 Anos ou mais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , População do Leste Asiático , Grupos Focais , Terapia Ocupacional/organização & administração , Cuidados Paliativos , Pesquisa Qualitativa , Singapura
2.
J Pain Symptom Manage ; 67(2): 147-156, 2024 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-37972719

RESUMO

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.


Assuntos
Luto , COVID-19 , Adulto , Humanos , Cuidados Paliativos , Pandemias , Estudos Transversais , Austrália/epidemiologia , Pesar , Família , Hospitais , Morte
3.
Neurooncol Pract ; 10(5): 408-417, 2023 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-37720389

RESUMO

Background: The objective of this scoping review was to describe the intervention characteristics and effectiveness of psychosocial interventions aimed at managing personality and behavior changes in people with brain tumors. A secondary objective was to explore if these interventions had an impact on outcomes for carers. Personality and behavior changes considered included aggression, apathy, paranoia, disinhibition, and emotional lability. Methods: This review was conducted following the Joanna Briggs Institute methodology for scoping reviews and the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) extension for scoping reviews. Searches were conducted in PsycINFO, CINAHL, Medline (Ovid), and Scopus. We synthesized studies published from 1996 to 2022 that evaluated interventions to manage brain tumor related personality and behavioral changes in adults. A data extraction tool were used based on the Joanna Briggs Institute template. Results are presented in a summary table and a narrative synthesis was conducted. Results: Three thousand and five hundred and ninety-four records were screened. Title and abstract screening resulted in 29 potentially eligible studies. Full screening excluded 24 articles and 5 interventions met the inclusion criteria. The interventions were diverse in duration, delivery modality, setting, and participation (eg, the patient individually or patient and carer). The interventions reported improvements in the targeted personality and behavior change symptoms for patients with primary brain tumors. Four studies included a measure of personality and behavior change symptoms and two studies included a measure of outcomes for carers and reported improvements in carer knowledge and a reduction in carer distress. All studies sampled fewer than 100 participants. Studies had limited follow-up data and different tools were used to assess the presence and nature of personality and behavior changes. Conclusions: There is a dearth of psychosocial interventions to support patients and their carers to manage brain tumor related personality and behavior changes.

4.
Death Stud ; 47(4): 421-429, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-35666691

RESUMO

Implementing evidence-based and cost-effective bereavement care is a challenge. A self-report measure could assist to identify caregivers at-risk of prolonged grief. We developed a new measure via five steps: identification of risk and protective factors for prolonged grief, item generation, consultation with an expert panel (n = 8), review by the academic team and expert panel, and a pilot test with family caregivers (n = 19) from three palliative care services. The Grief and Bereavement Assessment is a brief self-report measure that is theoretically and empirically grounded, acceptable to caregivers, feasible for use in palliative care, and requires psychometric validation.


Assuntos
Luto , Cuidados Paliativos na Terminalidade da Vida , Humanos , Autorrelato , Pesar , Cuidados Paliativos , Cuidadores
5.
Curr Oncol ; 29(12): 9928-9955, 2022 12 17.
Artigo em Inglês | MEDLINE | ID: mdl-36547195

RESUMO

The aim of this project was to determine research priorities, barriers, and enablers for adult primary brain tumour research in Australia and New Zealand. Consumers, health professionals, and researchers were invited to participate in a two-phase modified Delphi study. Phase 1 comprised an initial online survey (n = 91) and then focus groups (n = 29) which identified 60 key research topics, 26 barriers, and 32 enablers. Phase 2 comprised two online surveys to (1) reduce the list to 37 research priorities which achieved consensus (>75% 2-point agreement) and had high mean importance ratings (n = 116 participants) and (2) determine the most important priorities, barriers, and enablers (n = 90 participants). The top ten ranked research priorities for the overall sample and sub-groups (consumers, health professionals, and researchers) were identified. Priorities focused on: tumour biology, pre-clinical research, clinical and translational research, and supportive care. Variations were seen between sub-groups. The top ten barriers to conducting brain tumour research related to funding and resources, accessibility and awareness of research, collaboration, and process. The top ten research enablers were funding and resources, collaboration, and workforce. The broad list of research priorities identified by this Delphi study, together with how consumers, health professionals, and researchers prioritised items differently, and provides an evidence-based research agenda for brain tumour research that is needed across a wide range of areas.


Assuntos
Pessoal de Saúde , Pesquisa , Humanos , Adulto , Nova Zelândia , Técnica Delphi , Austrália
6.
Patient Educ Couns ; 105(7): 1904-1916, 2022 07.
Artigo em Inglês | MEDLINE | ID: mdl-35260259

RESUMO

OBJECTIVE: Practice guidelines emphasize the importance of investigating psychosocial distress in mesothelioma patients and family caregivers. We aimed to synthesize research on the psychosocial support needs of mesothelioma patients and their family caregivers. METHODS: We conducted a systematic review with a narrative synthesis and quality assessment. The review process adhered to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. RESULTS: MEDLINE, EMBASE, Scopus, PsychArticles, and PsycINFO were searched until December 2020 and 37 studies in English met inclusion criteria. Most (n = 24) included mesothelioma patients as a very small proportion of their cancer samples. A narrative synthesis was conducted on the 13 studies including only mesothelioma patients (n = 297) and/or caregivers (n = 82). Patients and caregivers want improvements in the diagnosis delivery and access to palliative care. Patients want emotional support, patient-centered treatment, improved information about illness progression and death, and to meet others with mesothelioma. Caregivers want one-on-one practical and emotional support. Study quality varied. CONCLUSIONS: Few studies focus on the psychosocial support needs relevant to mesothelioma. Mesothelioma patients and family caregivers highlight targeted psychosocial care as an unmet need. PRACTICE IMPLICATIONS: Efforts are required to design and test psychosocial interventions for this vulnerable and overlooked group. PROTOCOL REGISTRATION: PROSPERO (registration number CRD42020167852).


Assuntos
Cuidadores , Mesotelioma , Cuidadores/psicologia , Humanos , Mesotelioma/terapia , Cuidados Paliativos/métodos , Sistemas de Apoio Psicossocial , Qualidade de Vida/psicologia
8.
Mindfulness (N Y) ; 12(5): 1224-1233, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-33425059

RESUMO

OBJECTIVES: Oncology health professionals experience high levels of burnout and compassion fatigue, affecting their health and the care they provide. This study aimed to establish whether present-centered awareness and attention (a component of mindfulness) is uniquely associated with burnout and compassion fatigue in oncology professionals. METHODS: An international sample of oncology professionals (n = 118) completed an online questionnaire with validated measures of present-centered awareness and attention, empathy, compassion fatigue, and burnout. Hierarchical multiple regressions were used to model relations among the independent variable (present-centered awareness and attention) and the criterion variables of burnout (disengagement, exhaustion) and compassion fatigue (compassion satisfaction, compassion burnout, secondary traumatic stress) after statistically controlling for empathy, age, gender, years of experience, and patient contact hours. RESULTS: Mean hours of patient contact per week was 23.52 (SD = 13.62), with 26 (22.03%) reporting 40 h or more. Higher hours of patient contact per week were positively associated with secondary traumatic stress. Present-centered awareness and attention was associated with lower disengagement, lower emotional exhaustion, higher compassion satisfaction, lower secondary traumatic stress, and lower compassion burnout. In each model, present-centered awareness accounted for unique variance after controlling for age, gender, years of experience, patient contact hours per week, and empathy scores. The amount of unique variance accounted for by present-centered awareness ranged from 4 to 10%. CONCLUSIONS: Oncology professionals reporting higher levels of present-centered awareness and attention reported higher compassion satisfaction and lower secondary traumatic stress, compassion burnout, exhaustion, and disengagement. Promoting present-centered awareness may be a mechanism that contributes to less burnout in oncology professionals.

9.
J Palliat Med ; 24(1): 112-115, 2021 01.
Artigo em Inglês | MEDLINE | ID: mdl-32255736

RESUMO

Background: Interviews are a common method of data collection in palliative care research because they facilitate the gathering of rich, experiential data that are important for theory and practice. What is less clear is the extent to which those interviewed are representative of the larger group. Objective: The aim of this study was to determine if family caregivers who volunteer to be interviewed were similar or different to those who do not. Design: This study used data from the Caregiving and Bereavement study, a prospective, longitudinal mixed-methods study of family caregivers' general health, quality of life, and grief. Setting/Subjects: The 16 caregivers who volunteered to be interviewed were compared to the 20 who did not. Measurements: Comparisons were made in terms of the caregivers' demographic characteristics as well as measures of their quality of life, general health, general grief, and caregiver prolonged grief (i.e., before death). Results: Compared to caregivers who did not volunteer for an interview, those who volunteered were significantly older and reported less caregiver prolonged grief. Logistic regression showed that for each 1-unit increase in the caregiver prolonged grief score, individuals were 13% less likely to agree to an interview. Conclusions: Research findings based upon family caregivers who volunteer for research interviews might not provide a full picture of their experiences and needs. Researchers are encouraged to consider strategies that sample broadly and promote the participation of the full range of family caregivers in research to address the neglected areas of pre- and postdeath bereavement care.


Assuntos
Luto , Cuidadores , Família , Pesar , Humanos , Cuidados Paliativos , Estudos Prospectivos , Qualidade de Vida , Voluntários
10.
Psychol Health ; 36(4): 478-495, 2021 04.
Artigo em Inglês | MEDLINE | ID: mdl-32404016

RESUMO

OBJECTIVE: Screening mammography has potential benefits as well as harms, but these are not always communicated to women. We therefore explored how women discuss screening mammography, the subject positions made available in their discourse, and the implications of these for informed choice. Design: We conducted 16 individual interviews with women aged 44-72 years who were attenders (n = 11) and non-attenders (n = 5) of screening, and analysed transcripts through Foucauldian Discourse Analysis. Main Outcome Measures: A semi-structured interview guide, informed by literature and researcher expertise, was used to collect data. Results: The women constructed screening mammography as either helpful or potentially harmful. We identified three subject positions-The Responsible Woman (who attends screening), The Irresponsible Woman (who does not attend screening), and the Judicious Woman (who engages in alternate breast health practices). Conclusion: These subject positions have the potential to limit women's choices, constrain shared decision-making with health professionals, and restrict women's engagement in risk-reducing behaviours. An expanded range of options ultimately offers an alternate future in which women's autonomy to control their own bodies is better supported.


Assuntos
Neoplasias da Mama , Comportamento de Escolha , Detecção Precoce de Câncer , Consentimento Livre e Esclarecido , Mamografia , Adulto , Idoso , Neoplasias da Mama/diagnóstico por imagem , Detecção Precoce de Câncer/psicologia , Feminino , Humanos , Consentimento Livre e Esclarecido/psicologia , Mamografia/psicologia , Pessoa de Meia-Idade
11.
Palliat Med ; 34(1): 145-154, 2020 01.
Artigo em Inglês | MEDLINE | ID: mdl-31659934

RESUMO

BACKGROUND: Determining the effect of caregiving and bereavement remains a challenge. To date, no study has employed a comparison group to investigate caregivers' grief, quality of life and general health in relation to non-caregivers. AIM: We aimed to determine how caregivers' grief, quality of life and general health changed following death compared to non-caregivers and whether pre-death grief predicted these outcomes. DESIGN: A prospective, longitudinal study of family caregivers and a comparison group matched for age, gender and postcode was conducted. All participants completed questionnaires at four points - once pre-death and three times post-death (3-4 months, 6-7 months and 9-10 months). SETTING/PARTICIPANTS: Participants (N = 70) were family caregivers of persons receiving palliative care, mostly for cancer, recruited from three palliative care providers in Western Australia and matched comparisons recruited from advertisements. RESULTS: There were significant differences between the caregivers' and comparisons' grief, general health and quality of life at pre-death, 3-4 months and 6-7 months post-death, but not at 9-10 months post-death. The rate of progression in these constructs following death was independent from the intensity of pre-death grief. However, caregiver prolonged grief score significantly predicted prolonged grief score at 6-7 and 9-10 months post-death. CONCLUSION: It took 9-10 months for the caregivers' grief, general health and quality of life to correspond to the comparison group. These findings present an opportunity for palliative care research and practice to consider how best to support the majority of caregivers without grief complications so that their pre- and post-death support needs are realised.


Assuntos
Luto , Cuidadores/psicologia , Nível de Saúde , Cuidados Paliativos , Adulto , Idoso , Morte , Feminino , Humanos , Estudos Longitudinais , Masculino , Pessoa de Meia-Idade , Estudos Prospectivos , Qualidade de Vida , Inquéritos e Questionários , Austrália Ocidental
12.
Am J Hosp Palliat Care ; 36(10): 877-884, 2019 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-31220919

RESUMO

BACKGROUND: Despite a growth in palliative care services, access and referral patterns are inconsistent and only a minority of people who would benefit from such care receive it. Use of palliative care is also affected by community attitudes toward palliative care. As such, determining community attitudes toward palliative care is crucial. We also need to determine what predicts attitudes in order to provide appropriate information and education. OBJECTIVES: The 2 research questions were: (1) What are community attitudes toward palliative care? and (2) what are the determinants of community attitudes toward palliative care? DESIGN: A tripartite model of attitudes was used, which articulates attitudes as comprising knowledge and experience, emotions, and beliefs. A cross-sectional descriptive survey was used. PARTICIPANTS: A community sample of 180 participants completed the survey. RESULTS: The average attitude and belief responses were very positive, the average emotions responses were somewhat positive. The sample had good knowledge of palliative care. Lowest knowledge scores were reported for the items: "Euthanasia is not part of palliative care," "Palliative care does not prolong or shorten life," and "Specialist palliative care is only available in hospitals." After controlling place of birth and age, it was found that beliefs, emotions, and knowledge each accounted for a significant proportion of unique variance in attitude toward palliative care. Each variable had a positive relationship with attitude. CONCLUSION: Beliefs, emotions, and knowledge all need to be incorporated into palliative care community education programs.


Assuntos
Conhecimentos, Atitudes e Prática em Saúde , Cuidados Paliativos/organização & administração , Opinião Pública , Adulto , Idoso , Idoso de 80 Anos ou mais , Austrália , Estudos Transversais , Emoções , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Adulto Jovem
13.
J Palliat Med ; 22(5): 480-488, 2019 May.
Artigo em Inglês | MEDLINE | ID: mdl-30461347

RESUMO

Background: Little is known about research priorities in adult palliative care. Identifying research priorities for adult palliative care will help in increasing research quality and translation. Objective: The aim was to identify the views of health professionals' research priorities in adult palliative care that lead to development of a palliative care research agenda in Australia. Design: A modified three-round Delphi survey. Setting/Subjects: Palliative care researchers and clinicians in Australia were invited to participate. Results: A total of 25 panelists completed round 1, 14 completed round 2, and 13 completed round 3. Round 1 resulted in 90 research priorities in 13 categories. Round 2 showed consensus agreement on 19/90 research priorities. Round 3 resulted in the top 10 research priorities of the 19 achieving consensus in round 2. Panelists agreed that research is needed on the transition to palliative care; improving communication about prognosis; increasing access to palliative care for indigenous communities, people who wish to remain at home, and people in aged care; addressing family caregivers' needs; promoting patients' and families' decision making; improving cross-cultural aspects of palliative care; determining the effects of assisted dying legislation; and improving bereavement care in rural, remote, and Aboriginal populations. Conclusions: The expert panelists identified the top 10 research priorities for adult palliative care. These identified research priorities are the most urgent topics requiring attention to increase the quality of life of patients requiring palliative care and their family members.


Assuntos
Pesquisa Biomédica/estatística & dados numéricos , Pessoal de Saúde/psicologia , Enfermagem de Cuidados Paliativos na Terminalidade da Vida/métodos , Cuidados Paliativos/métodos , Pesquisa/estatística & dados numéricos , Adulto , Atitude do Pessoal de Saúde , Austrália , Técnica Delphi , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Projetos de Pesquisa , Inquéritos e Questionários
14.
Breast ; 42: 81-93, 2018 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-30199761

RESUMO

In light of the contention surrounding the benefit-to-harm ratio of screening mammography, this systematic review aimed to understand women's knowledge of screening mammography. The search yielded 35 studies of varying methodologies, published/completed between 1992 and 2017. Data was collected between November 2017 and February 2018 and utilised publications from member countries of the International Cancer Screening Network- Breast Cancer Division. Data was analysed using a narrative synthesis. The results of the review suggest that most women are aware of mammograms, however there was large variability regarding the awareness of false positives/negatives and about the purpose of screening. Some topics (e.g. radiation, commencement age) are well understood by women; however, others are not (e.g., cessation age, overdiagnosis, and mortality reduction). The findings need to be considered in light of the variability of methods used to assess women's knowledge and there is a need to develop psychometrically validated and culturally appropriate measures of knowledge regarding screening mammography. Further, the lack of consensus regarding what women 'should' know in order to provide informed consent has implications for understanding what informed consent in breast screening means in practice.


Assuntos
Neoplasias da Mama/psicologia , Detecção Precoce de Câncer/psicologia , Conhecimentos, Atitudes e Prática em Saúde , Mamografia/psicologia , Programas de Rastreamento/psicologia , Adulto , Neoplasias da Mama/prevenção & controle , Feminino , Humanos , Pessoa de Meia-Idade , Participação do Paciente/psicologia , Prognóstico , Saúde da Mulher
15.
Eur J Cancer Care (Engl) ; 27(2): e12804, 2018 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-29341295

RESUMO

This study aimed to determine and compare Radiation Therapists' (RTs') and Radiation Oncology Medical Physicists' (ROMPs') perspectives about their profession and workplace, satisfaction with career progression opportunities, and leaving the current workplace. RTs and ROMPs who were currently or had previously worked in Australia were invited to complete an online survey. Univariate and multivariate methods were used for analysis. Participants were 342 RTs and 112 ROMPs with estimated response rates of 14% and 26% respectively. Both professions rated workload poorly and identified the need for improvement in: communication between professions' members, support for junior staff/new graduates, staff morale, on-site training and multidisciplinary communication. RTs, more than ROMPs, perceived their profession was recognised and respected, but RTs were less likely to be satisfied with career progression/advancement, job promotion prospects and opportunities to specialise. At least 20% of RTs and ROMPs were thinking about leaving their workplace and 13% of RTs and 8% of ROMPs were thinking about leaving their profession. Different factors contributed to workforce satisfaction and retention within each profession. Staff satisfaction and career progression are critical to retain RTs and ROMPs. Further research is required to explore strategies to address workplace dissatisfaction, recruitment and retention.


Assuntos
Atitude do Pessoal de Saúde , Radioterapia (Especialidade) , Adulto , Austrália , Mobilidade Ocupacional , Comunicação , Feminino , Física Médica , Mão de Obra em Saúde/organização & administração , Humanos , Relações Interprofissionais , Satisfação no Emprego , Masculino , Pessoa de Meia-Idade , Moral , Estresse Ocupacional/etiologia , Carga de Trabalho/normas , Local de Trabalho/normas
16.
Int J Lang Commun Disord ; 53(3): 542-549, 2018 05.
Artigo em Inglês | MEDLINE | ID: mdl-29327799

RESUMO

BACKGROUND: Speech pathologists have a pivotal role in palliative care, assisting patients with swallowing and communication disorders, yet very little is known about the preparedness of speech pathologists to work in this field. AIMS: To investigate the preparedness of speech pathologists for working in palliative care. The term 'palliative care' was viewed as an encompassing umbrella term incorporating the management/reduction of symptoms and improvement in a person's quality of life at any point of the disease progression. METHODS & PROCEDURES: Participants were Australian-trained speech pathologists who provided adult palliative care services. An online questionnaire was used to gather both quantitative and qualitative data from practising speech pathologists. Qualitative data were analysed and interpreted using conventional content analysis. Descriptive statistics were analysed via the Statistical Package for the Social Sciences (SPSS) for Windows Version 22. Non-parametric tests (chi-square and Mann-Whitney U-test) were used for further analysis. OUTCOMES & RESULTS: The majority (70%) of participants indicated that their university training did not prepare them to practice in palliative care. Participants who received palliative care education at the tertiary level were significantly more prepared to work with palliative patients than those who had not; however, only a minority (27%) had received such training. Just over half (57%) reported having completed post-university professional development in palliative care. The speech pathologist's role in palliative care was also highlighted, with speech pathologists outlining their contribution to the assessment of patients' communication and swallowing abilities. In addition, recommendations for palliative care content to be incorporated into university curriculum were suggested. CONCLUSIONS & IMPLICATIONS: Speech pathologists can make important contributions to end-of-life care, but there is much scope for improving the availability and quality of university and post-university palliative care training opportunities so that people receiving palliative care are best supported.


Assuntos
Pessoal Técnico de Saúde/psicologia , Atitude do Pessoal de Saúde , Competência Clínica , Cuidados Paliativos/psicologia , Patologia da Fala e Linguagem/educação , Adulto , Austrália , Estudos Transversais , Feminino , Humanos , Masculino , Cuidados Paliativos/métodos , Patologia da Fala e Linguagem/métodos
17.
PLoS One ; 12(10): e0184750, 2017.
Artigo em Inglês | MEDLINE | ID: mdl-28977013

RESUMO

BACKGROUND: Standards for bereavement care propose that support should be matched to risk and need. However, studies in many countries demonstrate that palliative care services continue to adopt a generic approach in offering support to bereaved families. OBJECTIVE: To identify patterns of bereavement support in palliative care services based upon the experience of bereaved people from a population based survey and in relation to clinical practice guidelines. DESIGN: An anonymous postal survey collected information from clients of six funeral providers in four Australian states (2014-15), 6 to 24 months after the death of their family member or friend, with 1,139 responding. Responses from 506 bereaved relatives of people who had terminal illnesses were analysed. Of these, 298 had used palliative care services and 208 had not. RESULTS: More people with cancer (64%) had received palliative care in comparison to other illnesses such as heart disease, dementia and organ failure (4-10%). The support for family caregivers before and after their relative's death was not considered optimal. Only 39.4% of the bereaved reported being specifically asked about their emotional/ psychological distress pre-bereavement, and just half of the bereaved perceived they had enough support from palliative care services. Half of the bereaved had a follow up contact from the service at 3-6 weeks, and a quarter had a follow-up at 6 months. Their qualitative feedback underlined the limited helpfulness of the blanket approach to bereavement support, which was often described as "not personal" or "generic", or "just standard practice". CONCLUSIONS: Timeliness and consistency of relationship is crucial to building rapport and trust in the service's ability to help at post-bereavement as well as a focus on the specific rather than the generic needs of the bereaved. In light of these limitations, palliative care services might do better investing their efforts principally in assessing and supporting family caregivers during the pre-bereavement period and developing community capacity and referral pathways for bereavement care. Our findings suggest that bereavement support in Australian palliative care services has only a tenuous relationship with guidelines and assessment tools, a conclusion also drawn in studies from other countries, emphasizing the international implications of our study.


Assuntos
Luto , Cuidadores/psicologia , Família/psicologia , Guias como Assunto , Cuidados Paliativos , Apoio Social , Austrália , Humanos
18.
Support Care Cancer ; 25(8): 2413-2420, 2017 08.
Artigo em Inglês | MEDLINE | ID: mdl-28258504

RESUMO

PURPOSE: The aim was to identify the views of Australian and New Zealand health professionals regarding the support needs of people with head and neck cancer (HNC) and their families and current gaps in service delivery. METHODS: A modified Delphi process assessed support needs of people with HNC following acute medical management. A systematic review of the literature was used to develop items relevant to seven key concepts underpinning the psychological experience of living with HNC. A panel of 105 health professionals was invited to participate in two questionnaire rounds. RESULTS: Of the potential panellists, 50 (48%) completed round 1, and of these, 39 (78%) completed round 2. Following two rounds, there was consensus agreement on the concepts uncertainty and waiting, disruption to daily life and fear of recurrence. The concepts the diminished self, making sense of and managing the experience, sharing the burden and finding a path did not achieve consensus. There were no differences in responses according to gender, organization type or location. Medical professionals had significantly higher agreement for the concept uncertainty and waiting compared to allied health professionals, and professionals with five years' or more experience had significantly higher agreement than those with less experience. CONCLUSIONS: Health professionals agreed that many psychosocial support needs of HNC survivors and families are not being met and that they experience difficulties in meeting these needs. Findings may inform evidence-based treatment programs for HNC survivors and their families to promote psychological resilience and quality of life in this vulnerable population.


Assuntos
Neoplasias de Cabeça e Pescoço/psicologia , Pessoal de Saúde/psicologia , Qualidade de Vida/psicologia , Sobreviventes/psicologia , Adulto , Técnica Delphi , Feminino , Neoplasias de Cabeça e Pescoço/mortalidade , Humanos , Masculino , Inquéritos e Questionários
19.
Artigo em Inglês | MEDLINE | ID: mdl-27147506

RESUMO

Workforce recruitment and retention are issues in radiation oncology. The working environment is likely to have an impact on retention; however, there is a lack of research in this area. The objectives of this study were to: investigate radiation therapists' (RTs) and radiation oncology medical physicists' (ROMPs) perceptions of work and the working environment; and determine the factors that influence the ability of RTs and ROMPs to undertake their work and how these factors affect recruitment and retention. Semi-structured interviews were conducted and thematic analysis was used. Twenty-eight RTs and 21 ROMPs participated. The overarching themes were delivering care, support in work, working conditions and lifestyle. The overarching themes were mostly consistent across both groups; however, the exemplars reflected the different roles and perspectives of RTs and ROMPs. Participants described the importance they placed on treating patients and improving their lives. Working conditions were sometimes difficult with participants reporting pressure at work, large workloads and longer hours and overtime. Insufficient staff numbers impacted on the effectiveness of staff, the working environment and intentions to stay. Staff satisfaction is likely to be improved if changes are made to the working environment. We make recommendations that may assist departments to support RTs and ROMPs.


Assuntos
Atitude do Pessoal de Saúde , Estresse Ocupacional , Radioterapia (Especialidade) , Carga de Trabalho , Local de Trabalho , Adulto , Austrália , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Pesquisa Qualitativa , Fatores de Tempo
20.
Am J Hosp Palliat Care ; 34(3): 275-281, 2017 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-26566928

RESUMO

BACKGROUND: Most bereaved people do not require specialist intervention, yet building community capacity in providing bereavement support is underdeveloped. While family caregivers indicate a need for more information about bereavement, there is little evidence to guide what this information might contain. OBJECTIVE: The study's purpose was to inform bereavement support by determining the advice people bereaved through expected deaths in palliative care have for others in that situation. DESIGN: Four funeral providers posted a questionnaire to previous clients who had used their services 6 to 24 months prior and 678 bereaved people responded. SETTING/PARTICIPANTS: The sample size for this study comprised 265 bereaved people whose relative used palliative care services. MEASUREMENTS: The questionnaire comprised 82 questions about caregiving, bereavement support, current bereavement-related distress, and 2 open-ended questions concerning their bereavement, one of them on advice they have to other people in the same situation. RESULTS: Family caregivers (n = 140) of people who received palliative care responded to the open-ended question about advice for others. An open content analysis yielded 3 themes-preparations for bereavement, utilizing social networks, and strategies for dealing with grief. CONCLUSIONS: Bereaved family caregivers' experiential knowledge can be harnessed to progress the development of bereavement care strategies for the good of the community. These responses could be incorporated into information brochures, posters, and other community education avenues in order to upskill palliative care bereavement volunteers and the wider community so that bereaved family caregivers are best supported.


Assuntos
Luto , Cuidadores/psicologia , Família/psicologia , Cuidados Paliativos/organização & administração , Apoio Social , Idoso , Informação de Saúde ao Consumidor/organização & administração , Conhecimentos, Atitudes e Prática em Saúde , Humanos , Masculino , Pessoa de Meia-Idade , Estresse Psicológico/psicologia
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