Supportive and palliative care in people with cirrhosis: International systematic review of the perspective of patients, family members and health professionals

Abstract Objective Dignity therapy (DT) is a kind of psychotherapy that identifies the main concerns of end-of-life patients that affect their perception of dignity and helps them to find a new meaning in life. Most prior studies on DT analyze outcomes for palliative care patients. The aim of this systematic review is to explore the outcomes of DT in palliative care patients’ family members. Method In June 2020, a bibliographic search was performed using the terms “Dignity Therapy” and “Palliative Care” in the following databases: Cochrane library, TRIP database, PUBMED, Scopus, and Web of Knowledge. Of the 294 articles found, 8 met the selection criteria and were considered in the present study. No articles were excluded based on their publication date. Results Family members generally believe that DT helps them to better prepare the patient's end-of-life and overcome the bereavement phase. The legacy document was considered a source of comfort, and most would recommend DT to other people in their situation. DT is generally considered as important as any other aspect of the patient's treatment. Significance of results There is evidence of the benefits of DT for palliative patients’ family members. However, there are still few studies that evaluate these outcomes. The existing evidence is poorly generalized, and thus, further studies are needed to deeply explore the benefits of this therapy both for patients and their families.

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Palliative care for older South Asian migrants: A systematic review

Palliative & Supportive Care ◽

10.1017/s1478951519000397 ◽

2019 ◽

Vol 18 (3) ◽

pp. 346-358 ◽

Cited By ~ 1

Author(s):

Jahan Shabnam ◽

Helle Timm ◽

Dorthe S. Nielsen ◽

Mette Raunkiaer

Keyword(s):

Systematic Review ◽

Decision Making ◽

Palliative Care ◽

South Asian ◽

Family Members ◽

Care Practice ◽

Care Needs ◽

International Evidence ◽

Migrant Families ◽

Care Decision

AbstractObjectiveSouth Asian migrants have a higher burden of life-threatening diseases and chronic diseases compared to other ethnic groups. Yet, knowledge gaps remain around their palliative care needs in the host countries. The aim of the review was to present results from a systematic literature review of available international evidence on experiences with and perspectives on palliative care among older South Asian migrants, relatives, and healthcare providers.MethodsA systematic review in accordance with PRISMA guidelines was conducted in February 2018, searching PubMed, CINAHL, PsychINFO, and EMBASE databases. PROSPERO #CRD42018093464. Studies included empirical research, providing international evidence on experiences and perspectives on palliative care of South Asian migrants and were published between 2000 and 2018. Thematic synthesis was used to analyze data.ResultsA total of 30 articles were included: qualitative (24), quantitative (5), and mixed methods (1). Three main themes were discovered: 1) palliative care practice within the family, 2) trust as a precondition of palliative care, and 3) the importance of knowledge and cultural competency. All the themes, to a greater or lesser extent, are related to access to and use of palliative care services by South Asian migrant families.Significance of resultsInvolvement of family members in palliative care decision making could improve the satisfaction of South Asian migrant families toward the service. For example, Advanced Care Planning involving family members could be a possible way to engage family members in palliative care decision making. Supportive interventions, e.g. providing knowledge, aimed at patients and their family members might improve knowledge and increase awareness among South Asian migrant families of palliative care. Knowledge gained from this review could be implemented with other ethnic minority groups.

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Palliative care for community patients diagnosed with dementia: a systematic review

British Journal of Community Nursing ◽

10.12968/bjcn.2019.24.12.570 ◽

2019 ◽

Vol 24 (12) ◽

pp. 570-575

Author(s):

Cathryn Smith ◽

Gina Newbury

Keyword(s):

Systematic Review ◽

Palliative Care ◽

End Of Life ◽

Health Professionals ◽

End Of Life Care ◽

Good Practice ◽

Community Setting ◽

Life Care ◽

Staff Support ◽

The Uk

Despite many efforts made by health organisations to deliver effective end-of-life care to patients with dementia, research indicates that palliative care is predominantly aimed at patients with terminal cancer, and that patients with dementia face challenges in accessing end-of-life care. This article explores the views of health professionals on providing palliative care to those patients diagnosed with dementia within the community setting. A systematic review of seven qualitative studies was performed to identify the best available evidence. The findings show that effective palliative care for patients with dementia continues being affected by many barriers and challenges. Good practice seems to be inconsistent and fragmented throughout the UK and European countries, and many health professionals are faced with difficulties associated with services and financial implications, training and education, staff support, communication, family support and dementia care.

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Recognition by family members that relatives with neurodegenerative disease are likely to die within a year: A meta-ethnography

Palliative Medicine ◽

10.1177/0269216311402712 ◽

2011 ◽

Vol 26 (2) ◽

pp. 108-122 ◽

Cited By ~ 5

Author(s):

G Hubbard ◽

K McLachlan ◽

L Forbat ◽

D Munday

Keyword(s):

Multiple Sclerosis ◽

Palliative Care ◽

Family Member ◽

Health Professionals ◽

Family Members ◽

Well Being ◽

Functional Abilities ◽

Thematic Synthesis ◽

To Receive ◽

Health And Well Being

Objective: To synthesize evidence of family members recognizing that their relative is likely to die within the year, and identifying the need for palliative care. Design: A meta-ethnography of studies of family members in multiple sclerosis (MS), Parkinson’s disease (PD) and motor neuron disease (MND). Review methods: Systematic search in electronic databases; thematic synthesis guided by the principles of meta-ethnography, which is a method for thematic synthesis of qualitative studies. Results: Nine articles were included. The results of the synthesis identified two key themes. First, family members are intimately aware of changes in their relative’s health and well-being. Sub-themes include family member awareness of different and progressive stages of the disease, noticing deterioration, noticing decline in functional abilities and recognizing that their relative will die. The second key theme is dilemmas of being involved in prognostication. Sub-themes include family member ambivalence toward hearing about prognostication, health professionals not being knowledgeable of the disease and family reluctance to receive palliative care. Conclusions: Family members monitor and recognize changes in their relative with PD, MND and MS and in themselves. Thus, drawing on the expertise of family members may be a useful tool for prognostication.

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Negotiating Boundaries: The Nurse Family Member Caring for Her Own Relative in Palliative Care

10.26686/wgtn.16972519 ◽

2021 ◽

Author(s):

◽

Patricia McClunie-Trust

Keyword(s):

Palliative Care ◽

Family Member ◽

Health Professionals ◽

Clinical Care ◽

Family Members ◽

The Self ◽

Self In Relation ◽

Living Well ◽

Critical History ◽

Professional Authority

<p>This research illuminates the challenges of living well within one's own family as a nurse caring for her own relative who is dying of a cancer-related illness. Developing a deeper awareness of the consequences of this caring work has been the central focus for inquiry in this research. Nursing requires epistemologies that encompass new ways of understanding how we live within our own families and communities and practice as nurses. The theoretical framework that guides this research interprets the French Philosopher Michel Foucault's (1926-1984) critical history of thought as an ethical project for nursing. It uses conceptual tools developed in his later writing and interviews to draw attention to how discursive knowledge and practices constitute subjectivity in relations of truth, power and the self's relation to the self. The first aspect of the analysis, landscapes of care examines the techniques of discourse as relations of power and knowledge that constitute nurse family members as subjects who have relationships with their own families and other health professionals. The second aspect analyses care of the self and others as self work undertaken to form the self as a particular kind of subject and achieve mastery over one's thoughts and actions. Nurses are called to care because they are present within their families with knowledge and expertise that makes a difference to how a dying relative experiences palliative care. Caring discourse positions nurses with responsibilities to their own; responsibilities that require sensitivity in knowing how to negotiate the relational spaces that constitute relationships with other family members and health professionals. Family discourse calls nurse family members to care as daughters, daughters-in-law, wives or mothers within normative understandings about the obligations that families have to care for their ill or dependent members. The discourse of expertise in knowing as a nurse positions nurse family members as interpreters of information for their families and observers who use their inside knowledge of how the health system works to watch over the ill person's clinical care. This expertise, which becomes visible as the exercise of professional authority in practising nursing, challenges the normative frameworks that classify and demarcate professional and lay roles in caring for the dying person. As an exploration of the complex and contradictory subjectivities of the nurse family member, this research illuminates the forms and limits of nursing practice knowledge. It shows how nursing is practised, and the identity of the nurse is created, through intellectual, political and relational work, undertaken on the self in relation to others, as modes of ethical engagement. Within this ethical engagement, nurse family members work to transform the self into discursive subjects, with the knowledge, skills and other capacities that are necessary to honour their commitments and responsibilities for care of another person. The experience of caring for their own relative transforms nurse family members' previously held values about how nurses ought to be with others in their professional work, creating a deeper sense of interest in and concern for the vulnerability of other people in palliative care.</p>

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Effectiveness of online communication skills training for cancer and palliative care health professionals: A systematic review

Psycho-Oncology ◽

10.1002/pon.5702 ◽

2021 ◽

Author(s):

Melissa Berg ◽

Irene Ngune ◽

Penelope Schofield ◽

Lisa Grech ◽

Ilona Juraskova ◽

...

Keyword(s):

Systematic Review ◽

Palliative Care ◽

Communication Skills ◽

Health Professionals ◽

Online Communication ◽

Skills Training ◽

Communication Skills Training ◽

Care Health

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Prevalence of and reasons for women’s, family members’, and health professionals’ preferences for cesarean section in Iran: a mixed-methods systematic review

Reproductive Health ◽

10.1186/s12978-020-01047-x ◽

2021 ◽

Vol 18 (1) ◽

Author(s):

Mahboubeh Shirzad ◽

Elham Shakibazadeh ◽

Khadijeh Hajimiri ◽

Ana Pilar Betran ◽

Shayesteh Jahanfar ◽

...

Keyword(s):

Systematic Review ◽

Mixed Methods ◽

Cesarean Section ◽

Health Professionals ◽

Meta Analysis ◽

Mode Of Delivery ◽

Family Members ◽

Risk Level ◽

Nulliparous Women ◽

System Factors

Abstract Background Cesarean section (CS) rates have been increasing globally. Iran has one of the highest CS rates in the world (47.9%). This review was conducted to assess the prevalence of and reasons for women’s, family members’, and health professionals’ preferences for CS in Iran. Methods and findings In this mixed-methods systematic review, we searched MEDLINE/PubMed, Embase, CINAHL, POPLINE, PsycINFO, Global Health Library, Google scholar; as well as Iranian scientific databases including SID, and Magiran from 1 January 1990 to 8th October 2019. Primary quantitative, qualitative, and mixed-methods studies that had been conducted in Iran with Persian or English languages were included. Meta-analysis of quantitative studies was conducted by extracting data from 65 cross-sectional, longitudinal, and baseline measurements of interventional studies. For meta-synthesis, we used 26 qualitative studies with designs such as ethnography, phenomenology, case studies, and grounded theory. The Review Manager Version 5.3 and the Comprehensive Meta-Analysis (CMA) software were used for meta-analysis and meta-regression analysis. Results showed that 5.46% of nulliparous women (95% CI 5.38–5.50%; χ2 = 1117.39; df = 28 [p < 0.00001]; I2 = 97%) preferred a CS mode of delivery. Results of subgroup analysis based on the time of pregnancy showed that proportions of preference for CS reported by women were 5.94% (95% CI 5.86–5.99%) in early and middle pregnancy, and 3.81% (95% CI 3.74–3.83%), in late pregnancy. The heterogeneity was high in this review. Most women were pregnant, regardless of their parity; the risk level of participants were unknown, and some Persian publications were appraised as low in quality. A combined inductive and deductive approach was used to synthesis the qualitative data, and CERQual was used to assess confidence in the findings. Meta-synthesis generated 10 emerging themes and three final themes: ‘Women’s factors’, ‘Health professional factors’, andex ‘Health organization, facility, or system factors’. Conclusion Despite low preference for CS among women, CS rates are still so high. This implies the role of factors beyond the individual will. We identified a multiple individual, health facility, and health system factors which affected the preference for CS in Iran. Numerous attempts were made in recent years to design, test and implement interventions to decrease unnecessary CS in Iran, such as mother-friendly hospitals, standard protocols for labor and birth, preparation classes for women, midwives, and gynaecologists, and workshops for specialists and midwives through the “health sector evolution policy”. Although these programs were effective, high rates of CS persist and more efforts are needed to optimize the use of CS.

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Scialorrea e tappi di muco: consigli pratici di gestione nei pazienti eleggibili alle cure palliative pediatriche

QUADERNI ACP ◽

10.53141/qacp.2021.76-79 ◽

2021 ◽

Vol 28 (2) ◽

pp. 76-79

Author(s):

Irene Avagnina ◽

Chiara Paolin ◽

Micaela Santini ◽

Franca Benini

Keyword(s):

Quality Of Life ◽

Palliative Care ◽

Health Professionals ◽

Management Strategies ◽

Family Members ◽

Pediatric Palliative Care ◽

Oncological Disease ◽

Clinical Level ◽

High Care

Pediatric palliative care is a multidisciplinary area of pediatrics that aims to ensure a quality of life for children suffering from incurable diseases with high care complexity and also respond to their needs and those of their families. At the clinical level, there are many disturbing symptoms with a wide impact on the quality of life, which must be managed and treated. In particular some of them represent a major challenge for caregivers and health professionals looking after children eligible for PPC. This work aims to present, with a practical and immediately useful cut for the pediatrician, the management strategies of frequent symptoms, starting with drooling and mucus plugs; the latter are very frequent in children with non-oncological disease, followed by PPC. If not treated, they limit the child’s quality of life and have a significant impact on the concerns and management of family members / caregivers.

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‘It’s not what they were expecting’: A systematic review and narrative synthesis of the role and experience of the hospital palliative care volunteer

Palliative Medicine ◽

10.1177/0269216319899025 ◽

2020 ◽

Vol 34 (5) ◽

pp. 589-604 ◽

Cited By ~ 1

Author(s):

Melissa J Bloomer ◽

Catherine Walshe

Keyword(s):

Systematic Review ◽

Palliative Care ◽

Health Professionals ◽

Psychosocial Support ◽

Narrative Synthesis ◽

Dying Patients ◽

Hands On ◽

High Acuity ◽

Positive Work Relationships ◽

And Training

Background: Volunteers make a major contribution to palliative care but little is known specifically about hospital palliative care volunteers. Aim: The aim of this study was to understand the role and experience of hospital palliative care volunteers. Design: Systematic review and narrative synthesis. Data sources: CINAHL, Embase, Medline, PsycINFO, PubMed and three dissertation databases were searched from inception to June 2019. A forward and backward search of included papers in key journals was also undertaken. Records were independently assessed against inclusion criteria by authors. Included papers were assessed for quality, but none were excluded. Results: In total, 14 papers were included. Hospital palliative care volunteers were mostly female, aged above 40 years, and training varied considerably. Volunteers faced unique challenges in supporting dying patients due to the nature of hospital care, rapid patient turnover and the once-off nature of support. Volunteer roles were diverse, with some providing hands-on care, but most focused on ‘being with’ the dying patient. Volunteers were appreciated for providing psychosocial support, seen as complementary to, rather than replacing the work of health professionals. Given volunteers were often required to work across multiple wards, establishing positive work relationships with health professionals was challenging. Divergent views about whether the volunteer was part of or external to the team impacted volunteers’ experience and perceptions of the value of their contribution. Conclusion: Hospital palliative care volunteers face unique challenges in supporting terminally ill patients. Volunteer support in hospital settings is possible and appropriate, if sufficient support is available to mitigate the challenges associated with complex, high-acuity care.

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