Susan Fiona Lee

Training and supportive programs for palliative care volunteers in community settings

BACKGROUNDnPalliative care is specialised health care to support people living with a terminal illness and their families. The involvement of volunteers can extend the range of activities offered by palliative care services, particularly for those living in the community. Activities undertaken by palliative care volunteers vary considerably but can be practical, social or emotional in nature. The types of training and support provided to these volunteers are likely to affect the volunteers effectiveness in their role and influence the quality of care provided to palliative care clients and their families. Training and support can also have considerable resource implications for palliative care organisations, which makes it important to know how to provide this training and support as effectively as possible.nnnOBJECTIVESnTo assess the effects of training and support strategies for palliative care volunteers on palliative care clients and their families, volunteers and service quality.nnnSEARCH METHODSnWe searched the Cochrane Central Register of Controlled Trials (CENTRAL,xa0The Cochrane Library,xa028 April 2014); MEDLINE (1946 to 28 April 2014); EMBASE (1988 to 28 April 2014); PsycINFO (1806 to 28 April 2014); CINAHL (EbscoHOST) (1981 to 28 April 2014); ProQuest Dissertations and Theses (1861 to 28 April 2014). We also searched the Database of Abstracts of Reviews of Effects (DARE, The Cochrane Library); reference lists of relevant studies; and conducted an extensive search for evaluations published in government reports and other grey literature including the CareSearch database (www.caresearch.com.au (September 2004 to February 2012) and websites of relevant organisations, for unpublished and ongoing studies.nnnSELECTION CRITERIAnRandomised controlled trials (RCTs), quasi-randomised controlled trials, controlled before-and-after (CBA) studies and interrupted time series (ITS) studies of all formal training and support programs for palliative care volunteers. Programs or strategies in included studies were classified according to any stated or implied purpose: that is, whether they intended to build skills for the volunteers role, to enhance their coping, or to maintain service standards.nnnDATA COLLECTION AND ANALYSISnTwo review authors screened 2614 citations identified through the electronic searches after duplicates were removed. The search of grey literature through websites yielded no additional titles. We identified 28 potentially relevant titles but found no studies eligible for inclusion.nnnMAIN RESULTSnWe did not find any studies that assessed the effects of training and support strategies for palliative care volunteers that meet our inclusion criteria. The excluded studies suggest that trials in this area are possible.nnnAUTHORS CONCLUSIONSnThe use of palliative care volunteers is likely to continue, but there is an absence of evidence to show how best to train or support them whilst maintaining standards of care for palliative care patients and their families.

Taking a stand against predatory publishers.

There is a blight threatening nursing and midwifery research, academic credibility and the value of our scholarship, the blight of ‘predatory publishing’ (Beall 2012, Pickler et al. 2015, Simpson 2016). This is a more modern and more malign equivalent of the embarrassing phenomena of ‘vanity publishing’. Once, if you were convinced of your literary talents but could find no reputable publisher who shared your rosy self-assessment, you could find a vanity publisher who would print a few hundred copies of your treasured poems or great first novel, in hidebound leather, with gold lettering. At last, you were now a published author, at least in your own mind. That may have been appropriate for some, or sad and harmless for others but there is nothing either appropriate or harmless about today’s predatory publishers. Latest estimates show that there are over 10,000 predatory journals churning out over 400,000 articles per year and netting the predators over US

Nurses' resilience and nurturance of the self

74 million (Shen & Bj€ ork 2015). Finances aside, the potential effect on scholarship and on the trustworthiness of what we consult and respect as ‘the literature’ or ‘evidence’ could be catastrophic. We risk the pollution, debasement and devaluing of what should be a credible, reliable and valuable repository of the best of nursing and midwifery research and scholarship. We also risk the very notion of academic standards and scholarly quality as these relate to the dissemination and sharing of our research and thinking.

A case study approach to investigating end-of-life decision making in an acute health service

BACKGROUNDnDespite the losses experienced by nurses in their role in palliative care, they wish to continue working in this environment. This is described as resilience, which enhances coping in dealing with death and grief.nnnAIMnTo explore the nature of nurses resilience and the way it is developed.nnnDESIGNnA qualitative research design using grounded theory methods was employed. With theoretical sampling, 18 interviews were conducted and theoretical saturation was achieved.nnnRESULTSnSelf-nurturing was evident as the way nurses developed resilience, which included knowledge of self, coping adaptively, valuing care and accepting limitations.nnnDISCUSSIONnAll participants spoke of the characteristics of resilience from the blend of individual responsibility for self and the support provided by others. However, none had educational pathways to build greater resilience.nnnCONCLUSIONnIntegrating support and education to foster nurses resilience is important to enable self-protection, as well as the provision of high quality care.

Experiences and perspectives of older people regarding advance care planning: A meta-synthesis of qualitative studies

AIMnTo identify end-of-life (EOL) decision making processes for patients with non-cancer illnesses in a major metropolitan hospital.nnnMETHODSnA retrospective review using a case study framework of 47 randomly selected patient records over a 6-month period explored issues in EOL care planning.nnnRESULTSnReviewed charts represented 53% of total deaths in the study period. All patients (aged 66-99) had co-morbid conditions. In 64%, the first record of EOL discussions occurred in the last 24h of life. Four case groups were identified, ranging from a clear plan developed with patient/family involvement and fully implemented, to no plan with minimal patient/family involvement in decision making. Factors related to clearer EOL care planning according to expressed patient wishes included multiple previous admissions, shorter hospitalisations at EOL, living with a relative and involvement of family in decisions about care.nnnCONCLUSIONnThis study has shown that the development and effective implementation of EOL plans is associated with the active involvement of both family members and health professionals. It also draws attention to the risks of delaying EOL discussions until late in the illness trajectory or later in life as well as pointing to challenges in acting on EOL developed outside the hospital environment.

Developing relationships: a strategy for compassionate nursing care of the dying in Japan

Background: Studies have indicated that family members or health professionals may not know or predict their older relatives’ or patients’ health preferences. Although advance care planning is encouraged for older people to prepare end-of-life care, it is still challenging. Aim: To understand the experiences and perspectives of older people regarding advance care planning. Design: A systematic review of qualitative studies and meta-synthesis was conducted. Data sources: CINAHL, MEDLINE, EMBASE, and PsycINFO databases were searched. Results: A total of 50 articles were critically appraised and a thematic synthesis was undertaken. Four themes were identified: life versus death, internal versus external, benefits versus burdens, and controlling versus being controlled. The view of life and death influenced older people’s willingness to discuss their future. The characteristics, experiences, health status, family relationship, and available resources also affected their plans of advance care planning. Older people needed to balance the benefits and burdens of advance care planning, and then judge their own ability to make decisions about end-of-life care. Conclusion: Older people’s perspectives and experiences of advance care planning were varied and often conflicted; cultural differences amplified variances among older people. Truthful information, available resources, and family support are needed to enable older people to maintain dignity at the end of life. The views of life and death for older people from different cultures should be compared to assist health professionals to understand older people’s attitudes toward advance care planning, and thus to develop appropriate strategies to promote advance care planning in different cultures.

Caring for families of the terminally ill in Malaysia from palliative care nurses' perspectives

OBJECTIVESnThe aim of this study was to explore the type of relationship and the process of developing these relationships between nurses and patients in palliative care units in Japan. The special contribution that culture makes was examined to better understand the intensity of nurses grief after the death of their patient.nnnMETHODSnThirteen Japanese registered nurses currently practicing in palliative care units were interviewed between July 2006 to June 2009. Theoretical sampling was utilised and the data were analysed using grounded theory methodology. Constant comparison was undertaken during coding processes until data saturation was achieved.nnnRESULTSnSignificant cultural influences emerged both in the type of relationship nurses formed with patients and in the way they developed relationships. The type of relationship was termed human-to-human, meaning truly interpersonal. The cultural values of Uchi (inside) and Soto (outside) have particular implications for the relationship. Four actions Being open, Trying to understand, Devoting time and energy, and Applying a primary nurse role, were identified as strategies for nurses to develop such relationships. The quality of this deeply committed encounter with patients caused nurses to grieve following patients death.nnnSIGNIFICANCE OF RESULTSnCulture is a major influence upon the reasons, complexities, and impact that lie behind nurses behaviours. Attention is needed to support nurses to sustain a fundamental caring quality in their relationships with patients.

The difficulties of recruiting participants from a non-dominant culture into palliative care research

AIMS AND OBJECTIVESnTo describe the process that nurses experienced in engaging with families in Malaysian palliative care settings and the challenges they faced.nnnBACKGROUNDnIn palliative care settings, nurses and the terminally ill persons family members interact very closely with each other. It is important for nurses to work with families to ensure that the care of the terminally ill person is optimised.nnnRESEARCH DESIGNnA qualitative design using grounded theory methods was used to describe how nurses engaged with families and the challenges they faced.nnnMETHODSnTwenty-two nurses from home care and inpatient palliative care settings across Malaysia participated in this study. Data were collected through seven interviews and eight focus group discussions conducted between 2007-2009.nnnRESULTSnThe main problem identified by nurses was the different expectations to patient care with families. The participants used the core process of Engaging with families to resolve these differences and implemented strategies described as Preparing families for palliative care, Modifying care and Staying engaged to promote greater consistency and quality of care. When participants were able to resolve their different expectations with families, these resulted in positive outcomes, described as Harmony. However, negative outcomes of participants not being able to resolve their different expectations with families were Disharmony.nnnCONCLUSIONSnThis study highlights the importance of engaging and supporting families of the terminally ill as well as providing a guide that may be used by nurses and carers to better respond to families needs and concerns.nnnRELEVANCE TO CLINICAL PRACTICEnThe study draws attention to the need for formal palliative care education, inclusive of family care, to enable nurses to provide the terminally ill person and their family effective and appropriate care.

How nurses cope with patient death: A systematic review and qualitative meta‐synthesis

Abstract Recruitment of participants from minority cultures is problematic for any type of research; but more particularly for palliative care research however, because of the perceived additional vulnerability of participants who are facing the end of their life. Even though the goal of palliative care is to improve the quality of the remaining life, the processes involving such vulnerable people require careful consideration. This consideration is doubly important when participants come from minority cultures. This study discusses the recruitment difficulties in a study focusing on the palliative care needs of Chinese people in Australia. Despite being part of Australian society for most of its’ colonized history, Chinese people remain a minority culture and place great importance on their particular culture and traditions. Significant recruitment issues were experienced due to language and cultural constraints, including that death and dying are taboo subjects. The access and recruitment processes utilized in this research are discussed as well as diverse strategies used to achieve involvement.

Human research ethics committees: issues in palliative care research

AIMS AND OBJECTIVESnTo review literature on nurses coping strategies with patient death.nnnBACKGROUNDnDealing with the loss of a patient was viewed as one of the most demanding and challenging encounters in clinical practice. Those nurses who are not competent in coping with patient death may be inadequate in supporting dying patients and their family members, and minimise the quality of end-of-life care. To get a broader understanding of how nurses cope with patient death and to develop meaningful and effective interventions, a systematic review which would help underpin the multidimensional approaches is needed.nnnDESIGNnA systematic review.nnnMETHODSnExhaustive searching in ten databases: CINAHL Plus, EMBASE, MEDLINE, AMED, PsycINFO, ProQuest Health & Medical Complete, ProQuest Dissertations & Theses Global, Google Scholar, EThOS and CareSearch. Meta-aggregation was used to synthesise the findings of the included studies.nnnRESULTSnThis systematic review aggregated ten categories from the sixteen qualitative studies included, and then two synthesised findings were derived: intrinsic resources and extrinsic resources. The intrinsic resources consisted of setting boundaries, reflection, crying, death beliefs, life and work experience, and daily routines and activity. The extrinsic resources were comprised of talking and being heard, spiritual practices, education and programmes, and debriefing.nnnCONCLUSIONnThis systematic review synthesised the findings about what resources nurses use when coping with patient death and made recommendations on future directions. Areas which could be developed to improve deficiencies that nurses had when faced with the losses of their patients were identified. Nurses need more support resources, which better assist them in coping with patient death.nnnRELEVANCE TO CLINICAL PRACTICEnThe results of this systematic review could provide evidence for nurses coping strategies when dealing with patient death, and the recommendations could be employed by nurses to cope with the losses of patients.