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1.
Death Stud ; 47(4): 421-429, 2023.
Artículo en Inglés | MEDLINE | ID: mdl-35666691

RESUMEN

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.


Asunto(s)
Aflicción , Cuidados Paliativos al Final de la Vida , Humanos , Autoinforme , Pesar , Cuidados Paliativos , Cuidadores
2.
Palliat Med ; 35(1): 76-96, 2021 01.
Artículo en Inglés | MEDLINE | ID: mdl-33103579

RESUMEN

BACKGROUND: Provision of paediatric palliative care is complex and optimally covers meeting the individual needs of a heterogenous population of children and their parent caregivers throughout a life-limiting illness. It is unclear whether existing approaches comprehensively address parent caregivers' needs. AIM: To examine support needs of parents caring for children with life limiting illnesses and identify specific approaches used to identify and address needs. DESIGN: A scoping review. DATA SOURCES: MEDLINE, EMBASE, PsycINFO, CINAHL and ProQuest Central, were searched for peer reviewed English language full text research published from 2008 to 2019. Study quality appraisal was undertaken. Fourteen quantitative, 18 qualitative and 12 mixed methods studies were synthesised and themed using summative content analysis and mapped to the Parent Supportive Care Needs Framework (PSCNF). RESULTS: Themes were communication, choice, information, practical, social, psychological, emotional and physical. Communication and choice were central and additional to domains of the PSCNF. Unmet were needs for supporting siblings, for respite care, out of hours, psychological, home and educational support. Six articles reported using instruments to identify parent carer support needs. CONCLUSION: Support needs of parent caregivers of children with life limiting illnesses are substantial and heterogenous. While studies report evidence of burden and distress in parent caregivers, this rarely translates into improvements in practice through the development of interventions. A systematic and regular assessment of individual parent caregiver support needs is required by using instruments appropriate to use in clinical practice to move the focus to palliative care interventions and improved services for parents.


Asunto(s)
Cuidadores , Padres , Niño , Comunicación , Humanos , Cuidados Paliativos , Relaciones Padres-Hijo , Apoyo Social
3.
Omega (Westport) ; 84(2): 596-616, 2021 Dec.
Artículo en Inglés | MEDLINE | ID: mdl-32070208

RESUMEN

The aim of this study was to provide a better understanding of current memorialization practices and their influence on grief due to bereavement and to explore ways of improving bereavement outcomes. The qualitative research design incorporated two phases, a scoping literature review, followed by in-depth interviews with eight service providers from the funeral, cemetery, and crematorium industries across Australia. The trend toward informal memorialization practices blurs the roles of community members and formal industry service providers. A public health approach to bereavement support that encompasses both groups is recommended as the most appropriate response to the evolving landscape. This approach focuses on building partnerships between industry service providers and other community organizations involved in end-of-life issues. We propose that reframing the role of formal industry service providers as educators and facilitators partnered within compassionate communities will support improved outcomes for the bereaved.


Asunto(s)
Aflicción , Cuidado Terminal , Cementerios , Empatía , Pesar , Humanos , Apoyo Social
4.
Omega (Westport) ; 84(1): 69-90, 2021 Nov.
Artículo en Inglés | MEDLINE | ID: mdl-31522603

RESUMEN

Although considerable research efforts have focused on bereavement outcomes following loss, there are few studies which address the role of memorialization, particularly as it relates to formal service provision. Currently the funeral, cemetery, and crematorium industries are observing a steady decline in traditional and formal memorialization practices. This study aims to identify current memorialization practices and emerging trends, highlight key priorities for improving service outcomes for the bereaved, and understand the implications of changing consumer preferences for service provision. The study's qualitative research design incorporates two phases, a scoping literature review followed by in-depth interviews with eight service providers from the funeral, cemetery, and crematorium industries. A key finding is that the trend toward contemporary and informal memorialization practices blurs the lines between the role of consumers and service providers. There is a clear opportunity for service providers to engage in community education as a means of building supportive relationships with and improving service outcomes for the bereaved.


Asunto(s)
Aflicción , Pesar , Humanos , Investigación Cualitativa
5.
Palliat Med ; 34(1): 145-154, 2020 01.
Artículo en Inglés | MEDLINE | ID: mdl-31659934

RESUMEN

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.


Asunto(s)
Aflicción , Cuidadores/psicología , Estado de Salud , Cuidados Paliativos , Adulto , Anciano , Muerte , Femenino , Humanos , Estudios Longitudinales , Masculino , Persona de Mediana Edad , Estudios Prospectivos , Calidad de Vida , Encuestas y Cuestionarios , Australia Occidental
6.
BMC Health Serv Res ; 19(1): 220, 2019 Apr 11.
Artículo en Inglés | MEDLINE | ID: mdl-30971236

RESUMEN

BACKGROUND: The ageing global population has seen increasing numbers of older people living with chronic health problems, declining function, and frailty. As older people seek to live out their years at home, family members, friends and neighbours (informal caregivers) are increasingly relied upon for support. Moreover, pressured health systems and shorter hospital length of stay mean that informal caregivers can find themselves supporting the older person who is still unwell after discharge. The Further Enabling Care at Home (FECH) program was developed as a nursing outreach intervention designed to systematically address support needs of family caregivers of older people after hospital discharge to sustain their home-based caregiving. The objective of this study was to explore the experiences of informal caregivers who participated in the FECH program after an older family member's discharge from hospital. METHODS: The study employed a qualitative descriptive design. Caregivers of older people discharged home from a Medical Assessment Unit in an Australian hospital who were included in the program were interviewed to explore their experiences and perceptions of the FECH program. Data were audio-recorded, transcribed, and subjected to thematic analysis. RESULTS: Twenty-one family caregivers (81% female, aged 25-89 years) participated in the interviews. Themes emerging were 'The experience of caregiving'; 'The experience of receiving FECH program support'; and 'Caregivers' suggestions for improvement'. Caregivers indicated that reflective discussions with the FECH nurse enabled them to recognise the complexity of the caregiving role and determine aspects where they needed support. Caregivers valued guidance from the FECH nurse in accessing information and resources, which helped them to feel more connected to support, more prepared to care for the older person and themselves, and more secure in the caregiving role. CONCLUSIONS: Caregivers' experiences indicated that the structured reflective FECH discussions prompted thought and provided guidance in navigating health and care systems. The FECH program appears to offer a means to address the practical, physical and psychosocial needs of informal caregivers as partners in person-centred health and social care. TRIAL REGISTRATION: ANZCTR Trial ID: ACTRN126140011746773 .


Asunto(s)
Actitud Frente a la Salud , Cuidadores/psicología , Servicios de Atención de Salud a Domicilio/normas , Adulto , Anciano , Anciano de 80 o más Años , Australia , Emociones , Familia/psicología , Femenino , Atención Domiciliaria de Salud , Humanos , Masculino , Persona de Mediana Edad , Evaluación de Necesidades , Alta del Paciente , Método Simple Ciego , Apoyo Social
7.
Death Stud ; 43(5): 316-323, 2019.
Artículo en Inglés | MEDLINE | ID: mdl-29757102

RESUMEN

This study investigated the importance of religious and spiritual beliefs in daily life in explaining prolonged grief disorder (PGD) symptomatology. Participants were 588 bereaved adults who completed a questionnaire. The importance of spiritual beliefs in daily life explained a small to medium, significant 3% of variance in PGD symptoms, but religious beliefs in daily life did not. Individuals who placed moderate importance on spiritual beliefs in their daily life may experience more intense grief.


Asunto(s)
Aflicción , Pesar , Espiritualidad , Adulto , Anciano , Anciano de 80 o más Años , Estudios Transversales , Femenino , Humanos , Masculino , Persona de Mediana Edad , Encuestas y Cuestionarios , Adulto Joven
8.
Death Stud ; 43(10): 619-628, 2019.
Artículo en Inglés | MEDLINE | ID: mdl-30265833

RESUMEN

This is the first study to explore bereaved individuals' experiences of funeral service providers using these services' databases. A total of 839 Australians participated in a postal survey, 6-24 months into their bereavement. Funeral providers were reported to be the third most prevalent form of bereavement support after friends and family. Analysis found six themes related to perceived helpful or unhelpful support: instrumental support, professionalism, informational support, financial tension, communication, and emotional support. Funeral providers could improve their support by adopting a proactive approach to bereavement needs and offering personalized and ongoing support. We develop these suggestions by exploring their potential contributions to building community capacity around death, dying and bereavement.


Asunto(s)
Aflicción , Prácticas Mortuorias , Apoyo Social , Adulto , Anciano , Anciano de 80 o más Años , Empatía , Femenino , Humanos , Masculino , Persona de Mediana Edad , Adulto Joven
9.
Palliat Med ; 32(8): 1378-1388, 2018 09.
Artículo en Inglés | MEDLINE | ID: mdl-29754514

RESUMEN

AIMS: To determine who provides bereavement support in the community, what sources are perceived to be the most or least helpful and for what reason, and to identify the empirical elements for optimal support in developing any future compassionate communities approach in palliative care. DESIGN: A population-based cross-sectional investigation of bereavement experiences. Sources of support (informal, community and professional) were categorised according to the Public Health Model of Bereavement Support; most helpful reasons were categorised using the Social Provisions Scale, and least helpful were analysed using inductive content analysis. SETTING AND PARTICIPANTS: Bereaved people were recruited from databases of funeral providers in Australia via an anonymous postal survey (2013-2014). RESULTS: In total, 678 bereaved people responded to the survey. The most frequently used sources of support were in the informal category such as family, friends and funeral providers. While the professional category sources were the least used, they had the highest proportions of perceived unhelpfulness whereas the lowest proportions of unhelpfulness were in the informal category. The functional types of helpful support were Attachment, Reliable Alliance, Social Integration and Guidance. The five themes for least helpful support were: Insensitivity, Absence of Anticipated Support, Poor Advice, Lack of Empathy and Systemic Hindrance. CONCLUSION: A public health approach, as exemplified by compassionate communities policies and practices, should be adopted to support the majority of bereaved people as much of this support is already provided in informal and other community settings by a range of people already involved in the everyday lives of those recently bereaved. This study has provided further support for the need to strengthen the compassionate communities approach, not only for end of life care for dying patients but also along the continuum of bereavement support.


Asunto(s)
Aflicción , Empatía , Familia/psicología , Pesar , Apoyo Social , Cuidado Terminal/organización & administración , Cuidado Terminal/psicología , Adulto , Anciano , Anciano de 80 o más Años , Australia , Estudios Transversales , Femenino , Humanos , Masculino , Persona de Mediana Edad , Encuestas y Cuestionarios
10.
BMC Palliat Care ; 17(1): 72, 2018 May 08.
Artículo en Inglés | MEDLINE | ID: mdl-29739457

RESUMEN

BACKGROUND: Indigenous peoples in developed countries have reduced life expectancies, particularly from chronic diseases. The lack of access to and take up of palliative care services of Indigenous peoples is an ongoing concern. OBJECTIVES: To examine and learn from published studies on provision of culturally safe palliative care service delivery to Indigenous people in Australia, New Zealand (NZ), Canada and the United States of America (USA); and to compare Indigenous peoples' preferences, needs, opportunities and barriers to palliative care. METHODS: A comprehensive search of multiple databases was undertaken. Articles were included if they were published in English from 2000 onwards and related to palliative care service delivery for Indigenous populations; papers could use quantitative or qualitative approaches. Common themes were identified using thematic synthesis. Studies were evaluated using Daly's hierarchy of evidence-for-practice in qualitative research. RESULTS: Of 522 articles screened, 39 were eligible for inclusion. Despite diversity in Indigenous peoples' experiences across countries, some commonalities were noted in the preferences for palliative care of Indigenous people: to die close to or at home; involvement of family; and the integration of cultural practices. Barriers identified included inaccessibility, affordability, lack of awareness of services, perceptions of palliative care, and inappropriate services. Identified models attempted to address these gaps by adopting the following strategies: community engagement and ownership; flexibility in approach; continuing education and training; a whole-of-service approach; and local partnerships among multiple agencies. Better engagement with Indigenous clients, an increase in number of palliative care patients, improved outcomes, and understanding about palliative care by patients and their families were identified as positive achievements. CONCLUSIONS: The results provide a comprehensive overview of identified effective practices with regards to palliative care delivered to Indigenous populations to guide future program developments in this field. Further research is required to explore the palliative care needs and experiences of Indigenous people living in urban areas.


Asunto(s)
Atención a la Salud/métodos , Servicios de Salud del Indígena/normas , Cuidados Paliativos/métodos , Australia , Canadá , Atención a la Salud/normas , Humanos , Nueva Zelanda , Cuidados Paliativos/estadística & datos numéricos , Estados Unidos
11.
Death Stud ; 42(2): 69-78, 2018 Feb.
Artículo en Inglés | MEDLINE | ID: mdl-28489494

RESUMEN

This study investigated differences in specific meanings made following bereavement, according to participants' prolonged grief symptomatology. A survey of 580 bereaved adults (Mage = 61.6 years, 70.7% female) showed 13 meanings predicted symptomatology, with the largest differences between the two lower symptomatology groups and the high symptomatology group; the latter was more likely to report no meaning. The results provide further support for empirically distinct groups within the bereaved population, not only in terms of symptoms, etiology, outcomes, courses, and treatment responses, but also in their meanings made, and may assist in advancing meaning reconstruction interventions.


Asunto(s)
Adaptación Psicológica , Actitud Frente a la Muerte , Aflicción , Pesar , Adulto , Anciano , Anciano de 80 o más Años , Femenino , Humanos , Masculino , Persona de Mediana Edad , Encuestas y Cuestionarios , Adulto Joven
12.
Palliat Support Care ; 15(1): 32-43, 2017 02.
Artículo en Inglés | MEDLINE | ID: mdl-27173737

RESUMEN

OBJECTIVE: Family caregivers of people with motor neurone disease (MND) experience adverse health outcomes as a result of their caregiving experience. This may be alleviated if their support needs are identified and addressed in a systematic and timely manner. The objective of the present study was to assess the feasibility and relevance of the Carer Support Needs Assessment Tool (CSNAT) in home-based care during the period of caregiving from the perspectives of the family caregivers of people with MND and their service providers. METHOD: The study was conducted during 2014 in Western Australia. Some 30 family caregivers and 4 care advisors participated in trialing the CSNAT intervention, which involved two visits from care advisors (6-8 weeks apart) to identify and address support needs. The feedback from family caregivers was obtained via telephone interviews and that of care advisors via a self-administered questionnaire. RESULTS: A total of 24 caregivers completed the study (80% completion rate) and identified the highest support priorities as "knowing what to expect in the future," "knowing who to contact if concerned," and "equipment to help care." The majority found that this assessment process adequately addressed their needs and gave them a sense of validation, reassurance, and empowerment. Care advisors advocated the CSNAT approach as an improvement over standard practice, allowing them to more clearly assess needs, to offer a more structured follow-up, and to focus on the caregiver and family. SIGNIFICANCE OF RESULTS: The CSNAT approach for identifying and addressing family caregivers' support needs was found to be relevant and feasible by MND family caregivers and care advisors. The tool provided a formal structure to facilitate discussions with family caregivers and thus enable needs to be addressed. Such discussions can also inform an evidence base for the ongoing development of services, ensuring that new and improved services are designed to meet the explicit needs of the family caregivers of people with a motor neurone disease.


Asunto(s)
Cuidadores/psicología , Necesidades y Demandas de Servicios de Salud , Enfermedad de la Neurona Motora/complicaciones , Psicometría/métodos , Australia , Cuidadores/estadística & datos numéricos , Femenino , Servicios de Atención de Salud a Domicilio/estadística & datos numéricos , Humanos , Estudios Longitudinales , Masculino , Enfermedad de la Neurona Motora/psicología , Cuidados Paliativos/métodos , Cuidados Paliativos/normas , Cuidados Paliativos/estadística & datos numéricos , Psicometría/instrumentación , Apoyo Social , Encuestas y Cuestionarios , Recursos Humanos
13.
Aust Crit Care ; 29(1): 27-34, 2016 Feb.
Artículo en Inglés | MEDLINE | ID: mdl-25939546

RESUMEN

INTRODUCTION: Reflecting on researchers' experiences during follow-up of patients enrolled in research may lead to improved understanding of the challenges faced in maintaining contact when patients leave hospital. AIMS: (1) Describe the challenges researchers face when following-up patients who survive ICU. (2) Identify issues that influenced our ability to follow-up patients. METHODS: This sub-study was part of a larger "case-control" study investigating the quality of life of ICU survivors with and without pre-existing chronic disease. Patients completed self-assessment QLQ and symptom assessment before hospital discharge and at six months, plus they were asked to keep a paper diary of healthcare services used. Patient contact was maintained by monthly telephone calls. Each telephone call was logged and summaries of conversations documented. Our experience of conducting the study was reviewed by the identification of common issues which arose from the follow-up of patients. RESULTS: Thirty patients with a history of chronic disease and 30 patients without underlying chronic disease were followed-up. A total of 582 telephone calls were made for 60 patients discharged from hospital of which 261 (45%) calls led to a telephone interview. Only 19 (30%) of diaries were completed and returned. We identified six challenges associated with issues that arose from the follow-up of patients. CONCLUSION: We underestimated the number of telephone calls required for follow-up after discharge. Diaries were unreliable sources of data suggesting strategies are needed to improve compliance. How patients respond to follow-up is not always predictable. Processes are needed to deal with unexpected information provided during telephone follow-up.


Asunto(s)
Enfermedad Crónica/terapia , Continuidad de la Atención al Paciente , Calidad de Vida , APACHE , Estudios de Casos y Controles , Femenino , Humanos , Unidades de Cuidados Intensivos , Tiempo de Internación/estadística & datos numéricos , Masculino , Persona de Mediana Edad , Alta del Paciente , Sobrevivientes
14.
Collegian ; 23(1): 13-8, 2016.
Artículo en Inglés | MEDLINE | ID: mdl-27188035

RESUMEN

BACKGROUND: Terminally ilL people who live alone at home are disadvantaged in terms of their places of care and death and health outcomes. There is a need to trial models of care that can extend the period of care at home for as long as possible for this group. The objective was to explore the experiences of nurses providing care to terminally ill clients who live at home alone and who were receiving either additional care aide support or a personal alarm through an RCT. METHODS: Nine nurses in a home-based palliative care service in Western Australia completed a questionnaire (82% response rate). FINDINGS: Client willingness to accept additional support from care aides, development of rapport between the client and care staff, and willingness to use the alarm appropriately all influenced the effectiveness of the models of care. These models of care may negate the need for frequent nurses' visits when nurses feeL confident that the care aide can pass on relevant information or that the client will use the alarm when required. CONCLUSIONS: Both models of care assisted in meeting the challenges to care provision; however, further larger trials are needed to test whether these might translate into granting clients their wishes regarding places of terminal care and death. This study is the first account of nurses' perspectives on service provision to support palliative care clients who live alone. It has prompted changes in practice and will inform service planning for this growing and challenging population group.


Asunto(s)
Servicios de Atención de Salud a Domicilio/organización & administración , Auxiliares de Salud a Domicilio/organización & administración , Rol de la Enfermera , Cuidados Paliativos/organización & administración , Mejoramiento de la Calidad/organización & administración , Persona Soltera , Cuidado Terminal/organización & administración , Femenino , Necesidades y Demandas de Servicios de Salud , Humanos , Masculino , Relaciones Enfermero-Paciente , Investigación Cualitativa , Encuestas y Cuestionarios , Enfermo Terminal , Australia Occidental
15.
Palliat Med ; 29(7): 577-89, 2015 Jul.
Artículo en Inglés | MEDLINE | ID: mdl-25805738

RESUMEN

BACKGROUND: Palliative care standards and policies recommend that bereavement support be provided to family caregivers, yet uncertainty surrounds whether support currently offered by palliative care services throughout developed countries meets caregiver needs. The public health model of bereavement support, which aligns bereavement support needs with intervention, may address this gap between policy and practice. AIM: The aim was to review the literature to identify bereavement risk assessment measures appropriate for different points in the caring and bereavement trajectories, evaluate their psychometric properties and assess feasibility for use in palliative care. DESIGN: A scoping review was systematically undertaken following Arksey and O'Malley's methodological framework. DATA SOURCES: PsycINFO, CINAHL, PubMed and Cochrane Reviews databases, as well as grey literature including Internet searches of Google, World Health Organization, CareSearch, the Grey Literature Report and OAIster were searched. Bereavement organisations and palliative care websites, reference lists in obtained articles and grief and bereavement handbooks were also scrutinised. RESULTS: Of 3142 records screened, 356 records yielded 70 grief measures. In all, 19 measures published between 1982 and 2014 were identified for inclusion in this review, and categorised for use with family caregivers at three points in time - before the patient's death (n = 5), in the period following the death (n = 10) and for screening of prolonged or complex grief (n = 4). The majority had acceptable psychometric properties; feasibility for use in palliative care varied substantially. CONCLUSION: This review is an important preliminary step in improving the assessment of bereavement risk and, consequently, better bereavement outcomes for palliative care family caregivers.


Asunto(s)
Aflicción , Cuidadores/psicología , Cuidados Paliativos/métodos , Medición de Riesgo/métodos , Adaptación Psicológica , Familia , Humanos , Psicometría , Encuestas y Cuestionarios
16.
BMC Geriatr ; 15: 70, 2015 Jun 25.
Artículo en Inglés | MEDLINE | ID: mdl-26108207

RESUMEN

BACKGROUND: Presentations to hospital of older people receiving family care at home incur substantial costs for patients, families, and the health care system, yet there can be positive carer outcomes when systematically assessing/addressing their support needs, and reductions in older people's returns to hospital attributed to appropriate discharge planning. This study will trial the Further Enabling Care at Home program, a 2-week telephone outreach initiative for family carers of older people returning home from hospital. Hypotheses are that the program will (a) better prepare families to sustain their caregiving role and (b) reduce patients' re-presentations/readmissions to hospital, and/or their length of stay; also that reduced health system costs attributable to the program will outweigh costs of its implementation. METHODS/DESIGN: In this randomised controlled trial, family carers of older patients aged 70+ discharged from a Medical Assessment Unit in a Western Australian tertiary hospital, plus the patients themselves, will be recruited at discharge (N = 180 dyads). Carers will be randomly assigned (block allocation, assessors blinded) to receive usual care (control) or the new program (intervention). The primary outcome is the carer's self-reported preparedness for caregiving (Preparedness for Caregiving Scale administered within 4 days of discharge, 2-3 weeks post-discharge, 6 weeks post-discharge). To detect a clinically meaningful change of two points with 80 % power, 126 carers need to complete the study. Patients' returns to hospital and subsequent length of stay will be ascertained for a minimum of 3 months after the index admission. Regression analyses will be used to determine differences in carer and patient outcomes over time associated with the group (intervention or control). Data will be analysed using an Intention to Treat approach. A qualitative exploration will examine patients' and their family carers' experiences of the new program (interviews) and explore the hospital staff's perceptions (focus groups). Process evaluation will identify barriers to, and facilitators of, program implementation. A comprehensive economic evaluation will determine cost consequences. DISCUSSION: This study investigates a novel approach to identifying and addressing family carers' needs following discharge from hospital of the older person receiving care. If successful, the program has potential to be incorporated into routine post-discharge support. TRIAL REGISTRATION: Australian and New Zealand Clinical Trial Registry: ACTRN12614001174673 .


Asunto(s)
Cuidadores , Relaciones Comunidad-Institución , Alta del Paciente , Centros de Atención Terciaria , Anciano , Anciano de 80 o más Años , Australia/epidemiología , Cuidadores/economía , Relaciones Comunidad-Institución/economía , Ahorro de Costo/métodos , Femenino , Hospitalización/economía , Humanos , Masculino , Nueva Zelanda/epidemiología , Alta del Paciente/economía , Centros de Atención Terciaria/economía
17.
BMC Palliat Care ; 14: 6, 2015.
Artículo en Inglés | MEDLINE | ID: mdl-25798071

RESUMEN

BACKGROUND: The aim of the current study is to determine the effects of caregiving on bereavement outcome. The study will address two important gaps in the research literature: (1) the relationship between pre-death distress and post-death outcomes and (2) family caregivers' anticipation and preparation of the death of the person for whom they care. METHODS/DESIGN: We will conduct a longitudinal, prospective study of adult family caregivers of adult patients receiving palliative care. All participants will complete a questionnaire administered at four points - approximately 4-8 weeks prior to bereavement, and 3-4, 6-7, and 9-10 months post-bereavement. The questionnaire includes measures of multidimensional caregiving experiences (strain, distress, positive appraisals, and family wellbeing), caregiver prolonged grief, multidimensional grief responses (despair, panic behaviour, blame and anger, detachment, disorganisation, and personal growth), prolonged grief, quality of life, general health (psychological and physical) and demographics. These caregivers' data will be compared to a comparison group matched for age, sex, and postcode, allowing the caregivers' general health and quality of life to be compared to a normative group. The caregivers will also be invited to participate in a semi-structured interview about preparing for impending bereavement. DISCUSSION: This is the first study to address the methodological limitations in the current literature and will likely make a significant contribution to both our understanding of caregiving on bereavement outcome and to bereavement care offered in palliative and hospice settings.

18.
BMC Palliat Care ; 14: 49, 2015 Oct 14.
Artículo en Inglés | MEDLINE | ID: mdl-26466576

RESUMEN

BACKGROUND: Palliative care standards advocate support for grieving caregivers, given that some bereaved people fail to integrate their loss, experience ongoing emotional suffering and adverse health outcomes. Research shows that bereavement support tends to be delivered on an ad hoc basis without formal assessment of risk or need. To align support with need, assessment of bereavement risk is necessary. The overall aim is to develop a bereavement risk assessment model, based on a three-tiered public health model, congruent with palliative care bereavement standards for use in palliative care in Western Australia. The specific aim of this phase of the study was to explore the perspectives of key stakeholders and to highlight issues in relation to the practice of bereavement risk assessment in palliative care. METHODS: Action research, a cyclical process that involves working collaboratively with stakeholders, was considered as the best method to effect feasible change in practice. The nine participants were multidisciplinary health professionals from five palliative care services, and a bereaved former caregiver. Data were obtained from participants via three 90 min group meetings conducted over five weeks. An inductive thematic analysis approach was used to analyse data following each meeting until saturation was reached, and the research team was satisfied that the themes were congruent with research aims. RESULTS: Existing measures were found unsuitable to assess bereavement risk in palliative care. Assessment following the patient's death presented substantial barriers, directing assessment to the pre-death period. Four themes were identified relating to issues in need of consideration to develop a risk assessment model. These were systems of care, encompassing logistics of contact with caregivers; gatekeeping; conflation between caregiver stress, burden and grief; and a way forward. CONCLUSIONS: These group discussions provide a data-driven explanation of the issues affecting bereavement risk assessment in palliative care settings. A number of barriers will need to be overcome before assessment can become routine practice. We recommend the development of a brief, pre-death caregiver self-report measure of bereavement risk that may empower caregivers, lead to early intervention, and allow staff to remain focused on patient care, reducing burden on staff and palliative care services.


Asunto(s)
Cuidados Paliativos al Final de la Vida , Cuidados Paliativos/métodos , Medición de Riesgo/métodos , Estrés Psicológico/terapia , Adulto , Anciano , Humanos , Persona de Mediana Edad , Investigación Cualitativa , Encuestas y Cuestionarios , Australia Occidental
19.
Palliat Care Soc Pract ; 18: 26323524241228306, 2024.
Artículo en Inglés | MEDLINE | ID: mdl-38347888

RESUMEN

Background: Family caregivers of people with motor neurone disease (MND) experience adverse health outcomes as a result of their caregiving experience. This may be alleviated if their support needs are identified and addressed in a systematic and timely manner. The objective of this pilot study was to assess the feasibility and relevance of the Carers' Alert Thermometer (CAT) in home-based care, from the perspective of MND family caregivers. The tool provides a formal structure to facilitate discussions with caregivers to enable needs to be addressed. Methods: This mixed-method study was conducted in Western Australia (2020-2021). Forty-one caregivers and five MND Advisors participated in trialling the CAT intervention which consisted of two encounters with Advisors (6-8 weeks apart) to identify and address support needs through action plans. Caregivers' feedback was obtained via telephone interviews and a thematic analysis was undertaken. Results: Thirty caregivers completed two CAT assessments. Caregivers identified support priorities of managing their feelings and worries, providing emotional or spiritual care, information about the person's condition and how their care needs might change. Seventeen caregivers were interviewed and found that this assessment process adequately addressed their needs and it should be continued, it brought the focus onto them to clarify problems and work through solutions. The improvements that were suggested by them, including better information/education in palliative care, led to the development of an online support/information toolkit, which served to empower caregivers and staff by accessing relevant information and resources. Conclusions: The CAT demonstrated utility for triaging caregivers most in need of additional support and those whom signposting to additional information and self-directed access to support was most appropriate. For any tool to become an integrated part of care, service provider support is key for implementation, allowing for the time resource required and an appropriate education and support structure. MND Associations have an important role in building stronger partnerships with supportive community networks, through compassionate communities models of care, to address the identified needs of MND families in a more sustainable and wholistic manner. Needs assessment is a means towards building this capacity between formal and informal networks.

20.
Lancet Public Health ; 9(4): e270-e274, 2024 Apr.
Artículo en Inglés | MEDLINE | ID: mdl-38492580

RESUMEN

Morbidity and mortality associated with bereavement is an important public health issue, yet economic and resource investments to effectively implement and sustain integrated bereavement services are sorely lacking at national and global levels. Although bereavement support is a component of palliative care provision, continuity of care for bereaved individuals is often not standard practice in palliative and end-of-life contexts. In addition to potentially provoking feelings of abandonment, failure to extend family-centred care after a patient's death can leave bereaved families without access to crucial psychosocial support and at risk for illnesses that exacerbate the already substantial public health toll of interpersonal loss. The effect of inadequate bereavement care disproportionately disadvantages vulnerable groups, including those living in resource-constrained settings. We build on available evidence and previous recommendations to propose a model for transitional care, firmly establishing bereavement care services within health-care institutions, while respecting their finite resources and the need to ultimately transition grieving families to supports within their communities. Key to the transitional bereavement care model is the bolstering of community-based supports through development of compassionate communities and upskilling of professional services for those with more substantial bereavement support needs. To achieve this goal, interprofessional health workers, institutions, and systems must shift bereavement care from an afterthought to a public health priority.


Asunto(s)
Aflicción , Cuidados Paliativos al Final de la Vida , Humanos , Prioridades en Salud , Salud Pública , Apoyo Social
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