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  1. Article ; Online: Death doula working practices and models of care: the views of death doula training organisations.

    Rawlings, Deb / Miller-Lewis, Lauren / Tieman, Jennifer / Swetenham, Kate

    BMC palliative care

    2023  Volume 22, Issue 1, Page(s) 78

    Abstract: Background: The role of death doula has emerged in recent years, arguably as a result of overwhelming demands on carers, healthcare professionals and service providers in end-of-life care. Death doulas work independently without governing oversight and ... ...

    Abstract Background: The role of death doula has emerged in recent years, arguably as a result of overwhelming demands on carers, healthcare professionals and service providers in end-of-life care. Death doulas work independently without governing oversight and enact the role in various ways. The main driver of this evolving role is the organisations that train them. The aim of this study was to examine death doula training organisations' views with regard to DD business models, incorporating the death doula role into other existing models of care, and role enactment.
    Methods: An electronic survey was administered to 15 death doula training organisations in 5 countries asking additionally that they disseminate the survey. Responses were received from 13 organisations, based in Australia (n = 4), the US (n = 4), Canada (n = 2), the UK (n = 1), Sweden (n = 1) and New Zealand (n = 1). This paper provides the qualitative findings from four open-text questions posed within the survey related to models of care.
    Results: Qualitative data analysis was inductive, themes were determined in relation to: (1) standardised business model for death doulas, (2) death doulas incorporated into existing models of care or existing funding options, (3) death doulas who volunteer their services rather than charge money, and (4) role specialisation such as has occurred with birth doulas.
    Conclusions: The death doula role has the potential to be formally recognised in the future under national registration schemes, accompanied by death doula training required via certification. Until such time the death doula role will continue to evolve much as the birth doula role has, organically and unstructured. How and if death doulas are incorporated into existing models of health or social care remains to be seen as the organisations that train them push for independence, flexibility and fiscal independence.
    MeSH term(s) Humans ; Doulas ; Hospice Care ; Terminal Care ; Social Support ; Australia
    Language English
    Publishing date 2023-06-23
    Publishing country England
    Document type Journal Article
    ZDB-ID 2091556-1
    ISSN 1472-684X ; 1472-684X
    ISSN (online) 1472-684X
    ISSN 1472-684X
    DOI 10.1186/s12904-023-01200-w
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  2. Article: Findings from a nursing scholarship study tour to inform a proposal for a day hospice model in South Australia.

    Swetenham, Kate

    International journal of palliative nursing

    2014  Volume 20, Issue 2, Page(s) 89–94

    Abstract: South Australia releases national and international travel scholarships every year to the nursing and midwifery workforce to enable them to undertake observational site visits to inform the development of service models that can be introduced into care ... ...

    Abstract South Australia releases national and international travel scholarships every year to the nursing and midwifery workforce to enable them to undertake observational site visits to inform the development of service models that can be introduced into care practices back in South Australia. Ten sites across New Zealand, Canada, and the UK agreed to host a site visit as part of a scholarship to look at day hospice (DH) programmes. The author undertook an observational study that included participation in DH programmes and discussions with staff and patients. There were many similarities across the three countries, in particular in the structure of the programmes, the staff makeup, and the support of the volunteer workforce. Two distinct models were observed: social and medical. Each has its value and both need to be incorporated to ensure services and participants have their needs met. Based on the site visits and other research, the author devised a proposal for South Australia to commence with a time-limited sessional group DH programme with a focus on maintenance of function for participants coupled with caregiver education and information provision.
    MeSH term(s) Canada ; Hospice Care/manpower ; Hospice Care/organization & administration ; Hospice and Palliative Care Nursing ; Humans ; Models, Organizational ; New Zealand ; South Australia
    Language English
    Publishing date 2014-02
    Publishing country England
    Document type Journal Article ; Research Support, Non-U.S. Gov't
    ZDB-ID 2115109-X
    ISSN 1357-6321
    ISSN 1357-6321
    DOI 10.12968/ijpn.2014.20.2.89
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  3. Article ; Online: Experiences of engaging a death doula: qualitative interviews with bereaved family members.

    Rawlings, Deb / Van Dinther, Kristine / Miller-Lewis, Lauren / Tieman, Jenifer / Swetenham, Kate

    Palliative care and social practice

    2023  Volume 17, Page(s) 26323524231207112

    Abstract: Background: There has been an emerging trend of adopting a death doula, a non-medical advocate and guide for people at the end of life and their families. While there has been growing empirical research regarding the work of death doulas, no studies ... ...

    Abstract Background: There has been an emerging trend of adopting a death doula, a non-medical advocate and guide for people at the end of life and their families. While there has been growing empirical research regarding the work of death doulas, no studies have been undertaken with the families who have engaged them.
    Objectives: To understand the experiences of families who used a death doula in terms of what they did for the patient and family; to understand the benefits and drawbacks of using a death doula; and to use family insight to determine cultural shifts towards death and dying, and what the death doula phenomenon tells us around our attitudes towards death and dying.
    Methods: We recruited and interviewed 10 bereaved family members to learn about their experiences using a death doula. This qualitative research took an interpretive phenomenological approach, and thematic analysis was used to analyse the data.
    Results: The most valuable attribute the families gained from death doulas was an increase in death literacy resulting in personal empowerment. Empowerment enabled positive end-of-life experiences for the family and personalised deaths for the patient. A novel finding was that the connections and knowledge shared between the death doula and family had a resonant effect, resulting in families being more comfortable with death and keen to share their knowledge with others. Therefore, family engagement of a death doula led to an increase in community awareness around death and dying.
    Conclusion: Family members' experience with a death doula was overwhelmingly positive, empowering them practically and emotionally to deliver the best end-of-life care. Empathy and sharing of knowledge by death doulas were valued by families and resulted in an increase in death literacy which provided families with opportunities to 'pay it forward'. Furthermore, the relationships formed between doulas and families have the potential for a lasting, resonant effect.
    Language English
    Publishing date 2023-11-08
    Publishing country United States
    Document type Journal Article
    ISSN 2632-3524
    ISSN (online) 2632-3524
    DOI 10.1177/26323524231207112
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  4. Article ; Online: An international survey of Death Doula training organizations: the views of those driving Death Doula training and role enactment.

    Rawlings, Deb / Miller-Lewis, Lauren / Tieman, Jennifer / Swetenham, Kate

    Palliative care and social practice

    2022  Volume 16, Page(s) 26323524221123344

    Abstract: Context: Death Doulas are working globally to provide non-medical end-of-life care. They have different training experiences and views on the role and whether it should be standardised.: Objective: To seek the views of organisations responsible for ... ...

    Abstract Context: Death Doulas are working globally to provide non-medical end-of-life care. They have different training experiences and views on the role and whether it should be standardised.
    Objective: To seek the views of organisations responsible for training Death Doulas in order to determine what the drivers are behind this emerging role.
    Methods: We conducted an online survey with Death Doula training organisations in five countries utilising both a targeted and snowball approach. Qualitative analysis was undertaken with themes pre-determined (apriori) due to the nature of the survey categories.
    Results: In total, representatives from 13 organisations in Australia, New Zealand, Sweden, Canada, United Kingdom, and United States responded. The organisations had provided training for 0 to 20 years, with one just starting and another training birth doulas and now expanding. Owners and trainers hold an array of qualifications such as academic, medical, non-medical, and life experience. Curricula have usually been developed locally, and not always included pedagogical consideration, a strategic business model, nor mapping processes such as gap analysis. The organisations are run similarly, and curricula have several consistent topics but with distinctly different approaches. Trainers' views are also mixed about the way to proceed with registration of the Death Doula role.
    Conclusion: The contrasting views of training organisations explain much of the ambiguity of Death Doulas themselves regarding standardisation of registration, education and role enactment. If heading towards the ultimate goal of professionalisation of the role then a challenging path lies ahead with little in the way of agreement in what this would require.
    Language English
    Publishing date 2022-09-12
    Publishing country United States
    Document type Journal Article
    ISSN 2632-3524
    ISSN (online) 2632-3524
    DOI 10.1177/26323524221123344
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  5. Article ; Online: End-of-life doulas: A qualitative analysis of interviews with Australian and International death doulas on their role.

    Rawlings, Deb / Litster, Caroline / Miller-Lewis, Lauren / Tieman, Jennifer / Swetenham, Kate

    Health & social care in the community

    2020  Volume 29, Issue 2, Page(s) 574–587

    Abstract: Death doulas (DD) are working with people at the end of life in varied roles with more clarity needed around their role and place within the health and social care systems. The aim of this work is to explore the DD role in end-of-life care from the ... ...

    Abstract Death doulas (DD) are working with people at the end of life in varied roles with more clarity needed around their role and place within the health and social care systems. The aim of this work is to explore the DD role in end-of-life care from the perspective of DDs. A sub-group of 20 DDs from a larger quantitative survey participated in semi-structured telephone Skype or Zoom interviews. Interview data were analysed using thematic analysis. Seven themes emerged from the qualitative analysis: what a DD offers, what a DD does, challenges and barriers, occupational preferences, family support, contract of service/fee and regulation. There is a general perception that healthcare professionals (HCP) do not understand what it is that DDs do; thus, the current study has helped to demystify the DD role and potentially reduce suspicion. The lack of a DD business model sees inconsistencies in what services each DD offers and what patients and families can expect. End of life is complex and confusing for patients and families and there is a need to further explore the DD role and how it can work when there are many inconsistencies in working practice. More research is required to look at the interplay among DDs, HCPs and palliative care volunteers in addressing the gaps in care provision and how these relationships might be more seamlessly managed.
    MeSH term(s) Australia ; Death ; Doulas ; Hospice Care ; Humans ; Qualitative Research ; Terminal Care
    Language English
    Publishing date 2020-08-03
    Publishing country England
    Document type Journal Article
    ZDB-ID 1155902-0
    ISSN 1365-2524 ; 0966-0410
    ISSN (online) 1365-2524
    ISSN 0966-0410
    DOI 10.1111/hsc.13120
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    Zs.A 3728: Show issues Location:
    Je nach Verfügbarkeit (siehe Angabe bei Bestand)
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    Jg. 1995 - 2021: Lesesall (2.OG)
    ab Jg. 2022: Lesesaal (EG)

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  6. Article ; Online: What role do Death Doulas play in end-of-life care? A systematic review.

    Rawlings, Deb / Tieman, Jennifer / Miller-Lewis, Lauren / Swetenham, Kate

    Health & social care in the community

    2018  Volume 27, Issue 3, Page(s) e82–e94

    Abstract: Current health and social care systems do not always meet the needs of the dying in our communities. As a result, patients and families are choosing to place their trust in those who can advocate for them or fill the gaps in care. Birth Doulas have been ... ...

    Abstract Current health and social care systems do not always meet the needs of the dying in our communities. As a result, patients and families are choosing to place their trust in those who can advocate for them or fill the gaps in care. Birth Doulas have been working with women during pregnancy and after birth for many years, and we are now seeing a new role, that of a Death Doula emerging in the end-of-life care space. How Death Doulas work within health and social care systems is not understood and we conducted a systematic review to explore the published literature to explore the role and potential implications for models of care delivery. Following the PRISMA recommendations, we searched the literature in January 2018 via bibliographic databases and the grey literature without search date parameters to capture all published literature. We looked for articles that describe the role/work of a death doula or a death midwife in the context of end-of-life care, or death and dying. Our search retrieved 162 unique records of which five papers were included. We analysed the papers in relation to relationship to health service, funding source, number and demand for services, training, licensing and ongoing support, and tasks undertaken. Death Doulas are working with people at the end of life in varied roles that are still little understood, and can be described as similar to that of "an eldest daughter" or to a role that has similarities to specialist palliative care nurses. Death doulas may represent a new direction for personalised care directly controlled by the dying person, an adjunct to existing services, or an unregulated form of care provision without governing oversight.
    MeSH term(s) Doulas/organization & administration ; Female ; Hospice Care/methods ; Humans ; Pregnancy ; Terminal Care/methods ; Trust
    Language English
    Publishing date 2018-09-26
    Publishing country England
    Document type Journal Article ; Systematic Review
    ZDB-ID 1155902-0
    ISSN 1365-2524 ; 0966-0410
    ISSN (online) 1365-2524
    ISSN 0966-0410
    DOI 10.1111/hsc.12660
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  7. Article ; Online: The voices of death doulas about their role in end-of-life care.

    Rawlings, Deb / Litster, Caroline / Miller-Lewis, Lauren / Tieman, Jennifer / Swetenham, Kate

    Health & social care in the community

    2019  Volume 28, Issue 1, Page(s) 12–21

    Abstract: Death Doulas' have emerged as a relatively new role supporting dying people and their family members; however there is a lack of clarity around how the role is enacted, and around the death doula role within health and social care systems. This study ... ...

    Abstract 'Death Doulas' have emerged as a relatively new role supporting dying people and their family members; however there is a lack of clarity around how the role is enacted, and around the death doula role within health and social care systems. This study aimed to explore the ambiguity of the role of death doulas in end-of-life care including the skills, training and experience of death doulas; how the role is communicated to the community; and the relationships to palliative care providers and other health professionals. People identifying as death doulas were invited to participate in an online survey between April and June 2018. Ethical approval was obtained. A descriptive cross-sectional study was conducted, and purposive sampling was used to survey death doulas registered with death doula training organisations, newsletters and email distribution lists. Questions were based on the researchers' previous findings about the role. One hundred and ninety completed or partially completed surveys were received. Results showed diversity within, and some commonalities across the sample in terms of: training, experience and skills; Death doulas have emerged not only as a response to the overwhelming demands on families and carers, but also demands placed on health care professionals (including palliative care) at the end-of-life. They have identified gaps in health and social care provision, perhaps taking on tasks that health professionals don't have responsibility for. However, the roles and scope of practice of death doulas is not clear-cut even within their cohort, which can then make it hard for patients and families when choosing a death doula, especially as a lack of regulation and standardised training means that doulas are working without oversight, and often in isolation.
    MeSH term(s) Attitude to Death ; Cross-Sectional Studies ; Doulas ; Hospice Care/methods ; Hospice and Palliative Care Nursing/methods ; Humans ; Professional Role ; Spirituality ; Surveys and Questionnaires ; Terminal Care/methods
    Language English
    Publishing date 2019-08-25
    Publishing country England
    Document type Journal Article
    ZDB-ID 1155902-0
    ISSN 1365-2524 ; 0966-0410
    ISSN (online) 1365-2524
    ISSN 0966-0410
    DOI 10.1111/hsc.12833
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  8. Article ; Online: How Can Activity Monitors Be Used in Palliative Care Patients?

    To, Timothy H M / Currow, David C / Swetenham, Kate / Morgan, Deidre D / Tieman, Jennifer

    Journal of palliative medicine

    2019  Volume 22, Issue 7, Page(s) 830–832

    Abstract: Background: ...

    Abstract Background:
    MeSH term(s) Fitness Trackers ; Humans ; Palliative Care ; Quality of Life ; Telemedicine/instrumentation
    Language English
    Publishing date 2019-03-19
    Publishing country United States
    Document type Journal Article
    ZDB-ID 1427361-5
    ISSN 1557-7740 ; 1096-6218
    ISSN (online) 1557-7740
    ISSN 1096-6218
    DOI 10.1089/jpm.2018.0414
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  9. Article: Communication differences when patients and caregivers are seen separately or together.

    Swetenham, Kate / Tieman, Jennifer / Butow, Phyllis / Currow, David

    International journal of palliative nursing

    2015  Volume 21, Issue 11, Page(s) 557–563

    Abstract: Background: Southern Adelaide Palliative Care Services introduced a nurse-led early introduction to a palliative care clinic in 2011. The clinic offers a thorough psychosocial assessment and the provision of information and an introduction to future ... ...

    Abstract Background: Southern Adelaide Palliative Care Services introduced a nurse-led early introduction to a palliative care clinic in 2011. The clinic offers a thorough psychosocial assessment and the provision of information and an introduction to future care planning. The patients and their caregivers are seen together by the nurse practitioner initially for a physical assessment. They are then seen by a social worker to focus on advanced care planning and assessment of social and emotional factors. After the social work visit, the patient and caregiver are separated, and the patient sees the psychosocial nurse for coping and adjustment to illness and the carer sees the caregiver network facilitator to assess their informal supports to assist in the role of community-based caregiving. The pilot study looks at the nature of communication in the clinic where patient and carer are together and compares that to when they are separated.
    Methods: A total of 33 patients and their caregivers agreed for their coversations to be tape recorded between May and November of 2013. All tape recordings were transcribed verbatim. Ten patient transcripts (n=40) have been coded for quantitative analysis. The codes identify content and function of speech, cues for information and emotion and whether they are responded to by clinicians.
    Results: Pilot results reveal that caregivers contribute little in the combined clinics and dominate the conversation in the private clinic. Patients, when seen alone, predominantly express emotion related cues, opposed to cues for information. The clinicians focus on their area of specialty, which results in little duplication in this clinic setting.
    Conclusion: An earlier evaluation of this clinic found that patients and their caregivers appreciate being separated in the clinic setting to have time and privacy to reveal fears and feelings related to end-of-life care. This current study quantifies the patient and caregiver experience and confirms those earlier findings.
    MeSH term(s) Aged ; Caregivers/psychology ; Communication ; Female ; Humans ; Male ; Patients/psychology ; South Australia
    Language English
    Publishing date 2015-11
    Publishing country England
    Document type Journal Article
    ZDB-ID 2115109-X
    ISSN 1357-6321
    ISSN 1357-6321
    DOI 10.12968/ijpn.2015.21.11.557
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  10. Article: Do patients and carers find separate palliative care clinic consultations acceptable? A pilot study.

    Swetenham, Kate / Tieman, Jennifer / Currow, David

    International journal of palliative nursing

    2014  Volume 20, Issue 6, Page(s) 301–305

    Abstract: Background: As differing patient and carer information needs have been reported, and in light of changing health-system priorities and issues identified in a self-assessment study, a specialist palliative care service established an interdisciplinary ... ...

    Abstract Background: As differing patient and carer information needs have been reported, and in light of changing health-system priorities and issues identified in a self-assessment study, a specialist palliative care service established an interdisciplinary psychosocial assessment clinic to separately assess patient and carer needs.
    Aim: To determine the acceptability of the separate assessment to patients and carers.
    Method: Patients with a high functional score and who were deemed well enough to manage an appointment were invited to attend the clinic. Consent to follow-up was obtained. Patient and carer satisfaction surveys were developed based on existing tools. Questionnaires were posted out with a pre-paid reply envelope to patients and carers. Data from completed surveys was entered into a data management system and frequency analysis completed. A secondary analysis of the comments was undertaken.
    Findings: The clinic was attended by 41 patients and 37 carers between September 2011 and the end of February 2012. There was a 46% response rate, with 24 questionnaires returned from both the patient and their carer, 6 from patients only, and 6 from carers only (2 of whom were bereaved). The opportunity for privacy to discuss their own fears and concerns related to the illness was appreciated by 94% of the patients and 83% of the carers.
    Conclusion: This initial pilot data shows patient and carer satisfaction with this clinic model. Further qualitative data would provide more information on the patient and carer experiences of the clinic.
    MeSH term(s) Caregivers ; Feedback ; Humans ; Palliative Care ; Patients ; Pilot Projects ; South Australia
    Language English
    Publishing date 2014-06
    Publishing country England
    Document type Journal Article
    ZDB-ID 2115109-X
    ISSN 1357-6321
    ISSN 1357-6321
    DOI 10.12968/ijpn.2014.20.6.301
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