Community-led and/or focused initiatives to support family carers within a palliative care context: An integrative review

2018 ◽  
Vol 33 (2) ◽  
pp. 250-256 ◽  
Author(s):  
Anita Chung ◽  
Aileen Collier ◽  
Merryn Gott
Keyword(s):  
Palliative Care ◽  
Grey Literature ◽  
Well Being ◽  
Research Literature ◽  
Integrative Review ◽  
Empirical Literature ◽  
Family Carers ◽  
Care Needs ◽  
Palliative Care Needs ◽  
Support Family

Background: Public health approaches to palliative care prioritise community-focused initiatives to support people with palliative care needs and their families. The nature and extent of these initiatives have not previously been reported. Aim: To identify community-led and/or focused initiatives that have been developed to support family carers of people with palliative care needs and for which evaluation information is reported in the empirical literature. Design: An integrative study design was undertaken using systematic methods. Data sources: CINAHL, Medline, PsycINFO, Embase, Cochrane, Sociological Abstracts, Proquest Social Science Database, and grey literature were searched using standardised search terms. Results: Two quantitative, two qualitative and two mixed method studies were identified ( n = 6). All community initiatives identified were professionally led, although three had consumer input. Most aimed to improve carer psychosocial well-being and all were reported to have been beneficial. Conclusions: This integrative review identified only six community-focused and evaluated initiatives supporting family carers in the international palliative care research literature. Further evaluation is needed. However, appropriate evaluation methods and reporting require further discussion and debate between all stakeholders. Service users and communities themselves must be central to this process.

scholarly journals The Role of Palliative Care in Oncology

2017 ◽  
Vol 34 (04) ◽  
pp. 307-312 ◽  
Author(s):  
Rajiv Agarwal ◽  
Andrew Epstein
Keyword(s):  
Palliative Care ◽  
Symptom Burden ◽  
Well Being ◽  
Care Needs ◽  
Patients With Cancer ◽  
Living With Cancer ◽  
Palliative Care Needs ◽  
Shed Light

AbstractPalliative care is a powerful adjunct to oncology that adds distinct value to the physical, mental, and psychosocial well-being of patients living with cancer. Its expanding role and integration with standard oncologic care has proven clinical benefit, as the practice of palliative care can help alleviate symptom burden, enhance illness and prognostic understanding, and improve both the quality of life and overall survival for patients. The primary aim of this review article is to highlight the significant interplay between palliative care and oncology and, in doing so, shed light on the areas for improvement and modern challenges that exist to meet the complex palliative care needs of patients with cancer.

scholarly journals Understanding family carer experiences of advanced dementia caregiving in India: towards a vision for integrated practice

2020 ◽  
Vol 28 (4) ◽  
pp. 337-348
Author(s):  
Louise Ritchie ◽  
Anna Jack-Waugh ◽  
Elsa Sanatombi Devi ◽  
Binil V ◽  
Anice George ◽  
...  
Keyword(s):  
Palliative Care ◽  
Focus Groups ◽  
Local Community ◽  
Well Being ◽  
Family Carer ◽  
Advanced Dementia ◽  
Family Carers ◽  
Care Needs ◽  
Content Type ◽  
Practitioner Education

PurposeMany individual and family hardships are associated with poorly understood palliative care needs arising from advanced dementia within India. The purpose of this paper is to explore the experiences of people in India affected by advanced dementia and to shape educational approaches for practitioners and the local community.Design/methodology/approachThree focus groups with family carers of people (n = 27) with advanced dementia were undertaken with local communities in South India. One focus group was carried out in English and two in the local language (Kannada) and translated to English.FindingsThe findings of the focus groups are presented in four themes, conditions of caring, intersecting vulnerabilities, desperate acts of care and awareness of education and training needs. These themes highlight the challenges faced by family carers of people with advanced dementia and describe the potential harm, abuse and poor mental well-being facing both the person with dementia and the family carer as a result of their situation.Research limitations/implicationsThere is a need to explore ways to ensure inclusivity and sensitivity in the research process and enable equal participation from all participants.Practical implicationsThe findings highlight a lack of support for family carers of people with advanced dementia and demonstrate the need for dementia-specific integrated and palliative care approaches in India.Originality/valueThis paper provides insight into the experiences and challenges facing family caregivers of people living with advanced dementia in India to shape practitioner education in a way that will underpin effective dementia-specific palliation and integrated services.

scholarly journals Dignity-conserving care for persons with palliative care needs — identifying outcomes studied in research: An integrative review

2020 ◽  
Vol 18 (6) ◽  
pp. 722-740 ◽  
Author(s):  
Annika Söderman ◽  
Ulrika Östlund ◽  
Carina Werkander Harstäde ◽  
Karin Blomberg
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Integrative Review ◽  
Future Research ◽  
Healthcare Organizations ◽  
Care Needs ◽  
Study Protocols ◽  
The Social ◽  
Palliative Care Needs

AbstractObjectivesWith people living longer, palliative care may be required for lengthier periods of time. This puts demands on healthcare organizations to provide optimal palliative care. Maintaining dignity is central for any person's health and quality of life, but especially for a person with palliative care needs. Dignity-conserving care needs to be evaluated to increase knowledge about outcomes and how to assess these. The purpose of this integrative review was to identify outcomes studied within dignity-conserving care and how these have been operationalized.MethodsAn integrative review was conducted in 26 quantitative or mixed-method studies and study protocols. Thematic synthesis with an abductive approach was used for analysis.ResultsSeven themes of studied outcomes were identified, as well as four cluster themes: themes related to Illness-Related Concerns, themes related to the Dignity-Conserving Repertoire, themes related to the Social Dignity Inventory, and themes regarding Overarching Dignity Issues. Most outcomes studied dealt with Illness-Related Concerns within the themes of “Performance, symptoms and emotional concerns” and “End-of-life and existential aspects”. Themes linked to the Social Dignity Inventory had the lowest number of outcomes studied. Outcomes regarding overarching dignity issues such as “Dignity-related distress” and “Quality of life” were common. However, the results lacked concrete communication outcomes.Significance of resultsThe results will underpin future research in which dignity-conserving care is implemented and evaluated, and contribute to the provision of evidence-based palliative care. A greater focus on outcomes within cluster themes related to the Dignity-Conserving Repertoire and the Social Dignity Inventory is needed, as is more focus on communication outcomes.

Psychiatric symptoms in palliative care

2019 ◽  
pp. 637-656
Keyword(s):  
Palliative Care ◽  
Psychiatric Symptoms ◽  
Emotional Health ◽  
Well Being ◽  
Emotional Reactions ◽  
Care Needs ◽  
The Common ◽  
Palliative Care Needs ◽  
Health And Well Being

This chapter covers the common psychiatric symptoms experienced in people with palliative care needs. It covers the challenges of diagnosis in this particular population and the need to take account of both the patients’ own coping mechanisms and the health challenges that they are facing as they approach the end of life. Palliative care is the provision of holisitic management to individuals and their carers/families who are facing issues associated with life-limiting illness. It embraces a biopsychosociocultural and spiritual approach with emphasis on quality of life. Consequently, the maintenance of psychological and emotional health and well-being is an essential component in the provision of comprehensive care. Initial diagnosis—and the circumstances surrounding this—is a time of great challenge for most patients, and the potential for strong emotional reactions and intense feelings of distress is heightened.

scholarly journals Palliative care needs of patients with multiple sclerosis in southeast Iran

2021 ◽  
Vol 20 (1) ◽  
Author(s):  
Fatemeh Dadsetan ◽  
Parvin Mangolian Shahrbabaki ◽  
Moghadameh Mirzai ◽  
Esmat Nouhi
Keyword(s):  
Multiple Sclerosis ◽  
Palliative Care ◽  
Pearson Correlation ◽  
Well Being ◽  
Teaching Hospitals ◽  
Care Needs ◽  
Cross Sectional ◽  
Significant Difference ◽  
Points Of View ◽  
Palliative Care Needs

Abstract Background Due to the chronic nature of multiple sclerosis, palliative care can play a significant role in improving the quality of life and well-being of the affected patients. An essential step for developing appropriate palliative care for these patients is to determine the types of palliative care necessary, from different points of view. Therefore, this study was conducted to compare the palliative care needs from the nurses’ and patients’ points of view in southeast Iran in 2017. Method This descriptive-analytical cross-sectional study was conducted on 154 nurses working in neurology wards of teaching hospitals associated with Kerman University of Medical Sciences and 132 patients with multiple sclerosis who were referred to these hospitals in southeast Iran. The data were collected using a questionnaire for assessing the palliative care needs of patients with multiple sclerosis. Pearson correlation coefficient, independent t-test, ANOVA, chi-square, and the Mann-Whitney and Kruskal-Wallis tests were used to examine the data. Results Both nurses and patients mentioned the palliative needs of patients with multiple sclerosis in terms of physical, social, spiritual, psychological, and economic dimensions, respectively, but the results showed that there was a significant difference between the two groups in all dimensions of palliative needs (P < 0.0001). Conclusion Given the differences in how patients and nurses prioritize palliative care needs, it is essential to consider the different dimensions of palliative needs of patients with multiple sclerosis.

An Integrative Review of the Role of Palliative Care in Lung Transplantation

2020 ◽  
Vol 30 (2) ◽  
pp. 147-154
Author(s):  
Patricia C. Pawlow ◽  
Caroline L. Doherty ◽  
Nancy P. Blumenthal ◽  
Lea Ann Matura ◽  
Jason D. Christie ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Lung Transplantation ◽  
Symptom Management ◽  
Lung Transplant ◽  
Integrative Review ◽  
Care Needs ◽  
Transplant Patients ◽  
Palliative Care Needs

Background: Lung transplant patients experience significant physical symptoms and psychological stress that affect their quality of life. Palliative care is an interdisciplinary specialty associated with improved symptom management and enhanced quality of life. Little, however, is known about the palliative care needs of lung transplant patients and the role it plays in their care. Aim: The aim of this integrative review was to synthesize the literature describing the palliative care needs, the current role, and factors influencing the integration of palliative care in the care of lung transplant patients. Design/Data Sources: We searched PubMed, Scopus, CINAHL, and Embase to identify English-language, primary studies focused on palliative care in adult lung transplantation. Study quality was evaluated using Strengthening the Report of Observational studies in Epidemiology and Consolidated Criteria for Reporting Qualitative Research criteria. Results: Seven articles were included in the review. Most were single-center, descriptive studies. Two studies used qualitative and 5 used quantitative methodologies. Collectively, these studies suggest that palliative care is typically consulted for physical and psychological symptom management, although consultation is uncommon and often occurs late in the lung transplant process. We found no studies that systematically assessed palliative needs. Misperceptions about palliative care, communication challenges, and unrealistic patient/family expectations are identified barriers to the integration. While limited, evidence suggests that palliative care can be successfully integrated into lung transplant patient management. Conclusions: Empirical literature about palliative care in lung transplantation is sparse. Further research is needed to define the needs and opportunities for integration into the care of these patients.

scholarly journals Understanding the palliative care needs and experiences of people with mesothelioma and their family carers: An integrative systematic review

2021 ◽  
pp. 026921632110073
Author(s):  
Madeleine Harrison ◽  
Clare Gardiner ◽  
Bethany Taylor ◽  
Stephanie Ejegi-Memeh ◽  
Liz Darlison
Keyword(s):  
Systematic Review ◽  
Palliative Care ◽  
Information Needs ◽  
Empirical Studies ◽  
Cochrane Library ◽  
Specialist Palliative Care ◽  
Family Carers ◽  
Care Needs ◽  
The Impact ◽  
Palliative Care Needs

Background: People with mesothelioma and their families have palliative care needs throughout the relatively short trajectory of their illness. Aim: To describe the palliative care needs and experiences of people with mesothelioma and their family carers. Design: Integrative systematic review with narrative synthesis (PROSPERO: CRD42020190115). Data sources: MEDLINE, CINAHL, PsycINFO and the Cochrane Library were searched for articles published between 01 January 2000 and 10 May 2020. Articles were included if they presented empirical studies or comprehensive reviews including information about the palliative care needs and experiences of people with mesothelioma and their family carers. Results: The search yielded 508 articles, 14 were included in the analysis. A cross cutting theme of ‘uncertainty’ was identified encompassing five themes: (1) organisation and co-ordination of services, (2) communication and information needs, (3) management of care needs and high symptom burden, (4) consideration of the impact of seeking compensation and (5) family carer needs. Our findings demonstrate that people with mesothelioma want a co-ordinated, team-based approach to palliative care with a named point of contact. Whilst carers value and benefit from early referral to specialist palliative care, this does not necessarily reflect the outcomes and views of patients. Conclusion: The evidence base around the palliative care needs and experiences of people with mesothelioma and their carers needs to be strengthened. The results of this review support the need to develop a greater understanding about the role non-specialist palliative care clinicians’ play in providing generalist palliative care for people with mesothelioma and their carers.

scholarly journals Examining the Range and Scope of Artists’ Professional Practices With Individuals With Palliative Care Needs: An International, Cross-Sectional Online Survey

2021 ◽  
Vol 12 ◽  
Author(s):  
Jenny Baxley Lee ◽  
Sonja McIlfatrick ◽  
Lisa Fitzpatrick
Keyword(s):  
Palliative Care ◽  
Online Survey ◽  
Research Policy ◽  
Well Being ◽  
Professional Practices ◽  
Future Research ◽  
Care Needs ◽  
Cross Sectional ◽  
Wide Range ◽  
Palliative Care Needs

Background: Internationally, it is recognized that artists facilitate arts engagement with individuals with palliative care needs. There is a gap in the literature describing the range and scope of artists’ professional practices in palliative care. The aim of this study was to examine an international range of professional practices among artists who work in palliative care including key professionals’ perceptions of these practices.Methods: An international, cross-sectional, online survey was conducted with health professionals, artists, and program coordinators with experience with artists working in palliative care. This survey was part of a larger mixed methods study. An instrument was systematically developed to examine artists’ professional practices. Descriptive statistics were reported for the total sample including frequencies, means and standard deviations and open-ended items were analyzed thematically.Results: 101 valid surveys were analyzed. Findings outlined: (1) who delivers the arts; (2) where and with whom; (3) practice descriptors; and (4) perceptions of practice. Themes identified from open-ended items on benefits and risks of practice revealed impacts on patients and artists alike, including: (1) enhanced well-being; (2) vulnerabilities; and (3) facilitators and barriers.Conclusion: Findings demonstrated a wide range of artists’ practices in palliative and end-of-life care, featuring notable consistencies in international practice worth further exploration. Ongoing and international efforts examining artists’ practices in palliative care contribute to the development of future research, policy and practice.

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