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Mogan C, Davies N, Harrison Dening K, Woodward A, Watkins C, Hartley N, Lloyd-Williams M. Establishing a research partnership for delivering palliative and end-of-life care for older people in rural and remote areas: a formative mixed-methods study. PUBLIC HEALTH RESEARCH 2025:1-20. [PMID: 40022536 DOI: 10.3310/rwsg7439] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 03/03/2025] Open
Abstract
Background Many older people live in rural and remote areas. As the ageing population grows, conditions such as cancer, dementia and stroke will become more prevalent, causing a huge demand for palliative and end-of-life care. However, evidence regarding models of care and interventions in rural and remote areas is limited. Aim A new United Kingdom rural palliative care partnership was funded for 12 months. It aimed to understand the models of palliative and end-of-life care for older people with cancer, dementia and stroke in rural/remote areas across all four nations of the United Kingdom. It also aimed to identify the core priorities for research into rurality and palliative care for older people. Methods The project consisted of three integrated components, including: (1) a scoping review of relevant literature on rural palliative care for older people with cancer, dementia and stroke; (2) stakeholder engagement workshops using a modified Nominal Groups Technique and (3) qualitative interviews with family carers who supported rural-/remote-dwelling older adults towards the end of life. Results Our scoping review was undertaken in 2022. The search identified 1128 unique citations, of which five papers were included. There were no United Kingdom studies on models of palliative and end-of-life care delivered to older people with cancer, dementia or stroke within rural/remote locations. However, international models of care were identified. Models included technological interventions to reach those in remote locations, the role of palliative care nurses and the use of volunteers. Articles highlighted the importance of not replacing face-to-face care with technology for ease of reaching more people and emphasised the importance of effective interdisciplinary working in rural and remote palliative care. Additionally, three online workshops to develop research capacity, identify models of care, understand issues of rurality and determine research priorities were attended by 15-20 stakeholders. Qualitative interviews were also undertaken with 20 family carers who had supported rural-/remote-dwelling older adults at their end of life. Data identified that rural/remote communities face challenges in accessing palliative and end-of-life care due to issues such as transport to and distance from services, poor broadband coverage and problems with workforce recruitment and retention. Synthesising the data from these methods helped to identify some interventions and models of care for palliative and end-of-life care for older people in rural and remote areas. It also helped us to jointly shape and develop research priorities, which included workforce planning and service composition, facilitating preferred place of death and the role of technology. However, there are gaps in our understanding about how to improve the family carer support as well as digital literacy among older people to help them benefit from technological interventions. Conclusions Overall, there is a lack of research on palliative and end-of-life care models and interventions provided to older adults with cancer, dementia and stroke in rural and remote settings, especially in the United Kingdom. There is an urgent need to co-design community-based models of palliative and end-of-life care in rural and remote locations, considering the unique challenges of living in these areas. Funding This article presents independent research funded by the National Institute for Health and Care Research (NIHR) Public Health Research programme as award number NIHR135350.
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Affiliation(s)
- Caroline Mogan
- Faculty of Health, Liverpool John Moores University, Liverpool, England, UK
| | - Nathan Davies
- Centre for Psychiatry and Mental Health, Wolfson Institute of Population Health, Faculty of Medicine and Dentistry, Queen Mary University of London, London, England, UK
| | | | - Abigail Woodward
- Centre for Psychiatry and Mental Health, Wolfson Institute of Population Health, Faculty of Medicine and Dentistry, Queen Mary University of London, London, England, UK
| | - Caroline Watkins
- Faculty of Health and Wellbeing, University of Central Lancashire, Preston, England, UK
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Ng HL, Wu XV, Yap SY, Yeo SNB, Dino MJ, Jiang Y. Exploring the Experiences of Older Adults and Their Caregivers in Home-Based Palliative Care Setting: A Systematic Review and Meta-Synthesis. Semin Oncol Nurs 2024; 40:151753. [PMID: 39550249 DOI: 10.1016/j.soncn.2024.151753] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 04/10/2024] [Revised: 10/10/2024] [Accepted: 10/12/2024] [Indexed: 11/18/2024]
Abstract
OBJECTIVES While Home-based palliative care might be the preferred choice of many, there has been little research exploring the experiences of older adults and caregivers in this setting. This systematic review aims to explore and synthesize the experiences of home-dwelling older adults (aged 60 and above) and their caregivers with Home-based palliative care. METHODS A Systematic Review and Meta-Synthesis of qualitative and mixed-methods studies was conducted and reported in accordance with PRISMA guidelines. A systematic search across nine electronic databases, as well as grey literature, reference lists and citation lists were conducted. Studies were included with the following criteria: older adult palliative patients and/or their informal caregivers with the primary setting of palliative care delivery at home. Quality appraisal was conducted by two researchers independently using the Critical Appraisal Skills Programme Qualitative Research Checklist and Mixed Methods Appraisal Tool. Data analysis was facilitated by Braun and Clark's thematic analysis, and meta-synthesis was underpinned by Sandelowski and Barroso's guidelines. RESULTS A total of 4,931 records were yielded through the electronic database search. After duplicate removal and screening of titles/abstracts and full-texts, a total of 25 studies were included. Five main themes and 11 sub-themes emerged: 1) Living in a diminishing world due to immobility, 2) Bittersweet caregiving process, 3) Navigating a fragmented healthcare system, 4) Maintaining normalcy amongst disruption, 5) Indispensable aspects of Home-based palliative care needed by families. CONCLUSIONS AND IMPLICATIONS FOR NURSING PRACTICE This meta-synthesis highlights the fundamental significance of embracing a dyadic approach to fully comprehend the intricate dynamics of Home-based palliative care. By recognising the older adult-caregiver dyad as an interconnected unit, future research, therapeutic interventions, and policy initiatives can integrate this dyadic perspective, resulting in more holistic and inclusive Home-based palliative care programs. REGISTRATION The protocol was registered on PROSPERO (Registration No. CRD42022376864).
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Affiliation(s)
- Hua Lin Ng
- Alice Lee Centre for Nursing Studies, Yong Loo Lin School of Medicine, National University of Singapore, Singapore
| | - Xi Vivien Wu
- Alice Lee Centre for Nursing Studies, Yong Loo Lin School of Medicine, National University of Singapore, Singapore; NUSMED Healthy Longevity Translational Research Programme, National University of Singapore, Singapore.
| | - Siat Yee Yap
- Alice Lee Centre for Nursing Studies, Yong Loo Lin School of Medicine, National University of Singapore, Singapore
| | - Seo Ngee Brian Yeo
- Alice Lee Centre for Nursing Studies, Yong Loo Lin School of Medicine, National University of Singapore, Singapore
| | - Michael Joseph Dino
- Research Development and Innovation Center, Our Lady of Fatima University, Philippines; School of Nursing, Johns Hopkins University, Baltimore, Maryland; College of Nursing, University of Central Florida, FL, USA
| | - Ying Jiang
- Alice Lee Centre for Nursing Studies, Yong Loo Lin School of Medicine, National University of Singapore, Singapore
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Mollaei F, Sharif Nia H, Pouralizadeh M, Karkhah S, Javadi-Pashaki N, Ghorbani Vajargah P. Resilience and related factors in caregivers of adult cancer patients: a systematic review. Ann Med Surg (Lond) 2024; 86:3451-3459. [PMID: 38846864 PMCID: PMC11152843 DOI: 10.1097/ms9.0000000000001469] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 07/31/2023] [Accepted: 10/24/2023] [Indexed: 06/09/2024] Open
Abstract
Background This systematic review aimed to investigate resilience and its related factors in caregivers of adult patients with cancer. Materials and methods A systematic search of online electronic databases including Scopus, PubMed, Web of Science, Iranmedex, and Scientific Information Database (SID) was performed using keywords extracted from Medical Subject Headings such as "Psychological Resilience", "Caregiver", and "Cancer" from the earliest to 6 June 2023. The quality of the studies included in this review was evaluated using the appraisal tool for cross-sectional studies (AXIS tool). Results A total of 2735 caregivers of cancer patients participated in 15 studies. The majority of the studies found that caregivers of cancer patients had high levels of resilience. Factors related to the resilience of cancer patients' caregivers included caregivers' social support, caregivers' quality of life, patients' resilience, caregivers' family function, patients' performance, caregivers' age, caregivers' health status, caregivers' self-esteem, caregivers post-traumatic growth, caregivers religious, caregivers hope, caregivers positive affect, patients age, patients social support, patients resilience support, patients quality of life, caregivers' anxiety, caregivers' depression, caregivers' burden, caregivers level of education, caregivers financial problem, caregivers memory, caregivers negative affect, caregivers post-traumatic stress disorder, maternal distress, and patients post-traumatic stress disorder. Conclusion Therefore, healthcare administrators and policymakers can enhance the resilience of caregivers and the quality of care they provide by instituting ongoing training initiatives focused on evaluating mental well-being and implementing coping strategies for managing stress and depression.
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Affiliation(s)
- Fereshteh Mollaei
- Department of Nursing, Shahid Beheshti School of Nursing and Midwifery, Guilan University of Medical Sciences, Rasht, Iran
| | - Hamid Sharif Nia
- Psychosomatic Research Center, Mazandaran University of Medical Sciences, Sari, Iran
- Department of Nursing, Amol School of Nursing and Midwifery, Mazandaran University of Medical Sciences, Sari, Iran
| | - Moluk Pouralizadeh
- Department of Nursing, School of Nursing and Midwifery, Guilan University of Medical Sciences, Rasht, Iran
| | - Samad Karkhah
- Department of Medical-Surgical Nursing, School of Nursing and Midwifery, Guilan University of Medical Sciences, Rasht, Iran
- Burn and Regenerative Medicine Research Center, Guilan University of Medical Sciences, Rasht, Iran
| | - Nazila Javadi-Pashaki
- Department of Medical-Surgical Nursing, School of Nursing and Midwifery, Guilan University of Medical Sciences, Rasht, Iran
- Social Determinants of Health Research Center (SDHRC), Guilan University of Medical Sciences, Rasht, Iran
| | - Pooyan Ghorbani Vajargah
- Department of Medical-Surgical Nursing, School of Nursing and Midwifery, Guilan University of Medical Sciences, Rasht, Iran
- Burn and Regenerative Medicine Research Center, Guilan University of Medical Sciences, Rasht, Iran
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Ben-Arye E, Samuels N, Keshet Y, Golan M, Baruch E, Dagash J. Exploring unmet concerns in home hospice cancer care: Perspectives of patients, informal caregivers, palliative care providers, and family physicians. Palliat Support Care 2024:1-9. [PMID: 38587040 DOI: 10.1017/s1478951524000567] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 04/09/2024]
Abstract
OBJECTIVES The study examines perspectives of patients in home hospice care; their informal caregivers; palliative health-care providers (HCPs); and family physicians, all regarding patients' unmet needs and quality of life (QoL)-related concerns. METHODS Participants from all 4 groups were approached within 2 months after the patient's admission to the home hospice care unit. Participants completed Edmonton Symptom Assessment Scale (ESAS) and Measure Yourself Concerns and Wellbeing (MYCAW) questionnaires, for patient's QoL-related concerns. Qualitative analysis of short narratives was conducted using ATLAS.ti software for systematic coding. RESULTS In total, 78 participants completed the study questionnaires: 24 patients, 22 informal caregivers, 22 palliative HCPs, and 11 family physicians. Informal caregivers gave higher scores (i.e., greater severity) than patients for fatigue on ESAS (p = 0.009); and family physicians lower scores than patients for ESAS drowsiness (p = 0.046). Compared with patients, palliative HCPs gave higher scores for patient emotional-spiritual concerns (77.2% vs. 41.7%, p = 0.02); lower scores for gastrointestinal concerns (p = 0.048); and higher scores for overall function (p = 0.049). Qualitative assessment identified a gap between how patients/informal caregivers vs. palliative HCPs/family physicians regard emotional-spiritual themes, including discussing issues related to death and dying. SIGNIFICANCE OF RESULTS The findings of the present study suggest that exploring a multifaceted cohort of home hospice patients, informal caregivers, palliative HCPs, and family physicians may provide insight on how to reduce communication gaps and address unmet needs of patients, particularly regarding emotional and spiritual concerns. CONCLUSIONS While the 4 groups were similar in their scoring of patient QoL-related concerns, there were discrepancies for some concerns (e.g., patient fatigue) and expectations regarding the need to discuss emotional and spiritual concerns, including on death and dying. Educational initiatives with programs providing training to all 4 groups may help bridge this gap, creating a more open and collaborative hospice care environment.
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Affiliation(s)
- Eran Ben-Arye
- Integrative Oncology Program, The Oncology Service and Lin Medical Center, Clalit Health Services, Haifa, Israel
- Faculty of Medicine, Technion-Israel Institute of Technology, Haifa, Israel
| | - Noah Samuels
- Center for Integrative Complementary Medicine, Shaare Zedek Medical Center, Faculty of Medicine, Hebrew University of Jerusalem, Jerusalem, Israel
| | - Yael Keshet
- Department of Sociology, Western Galilee College, Akko, Israel
| | - Miri Golan
- Integrative Oncology Program, The Oncology Service and Lin Medical Center, Clalit Health Services, Haifa, Israel
| | - Erez Baruch
- Integrative Oncology Program, The Oncology Service and Lin Medical Center, Clalit Health Services, Haifa, Israel
| | - Jamal Dagash
- Integrative Oncology Program, The Oncology Service and Lin Medical Center, Clalit Health Services, Haifa, Israel
- Palliative Care - Home Care Hospice, Clalit Health Services, Haifa, Israel
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Cotton A, Sayers J, Green H, Magann L, Paulik O, Sikhosana N, Fernandez R, Foster J. Older persons' perceptions and experiences of community palliative care: a systematic review of qualitative evidence. JBI Evid Synth 2024; 22:234-272. [PMID: 37930393 PMCID: PMC10871598 DOI: 10.11124/jbies-22-00353] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/07/2023]
Abstract
OBJECTIVE The objective of this review was to critically appraise and synthesize qualitative evidence of older persons' perceptions and experiences of community palliative care. INTRODUCTION Palliative care focuses on the relief of symptoms and suffering at the end of life and is needed by approximately 56.8 million people globally each year. An increase in aging populations coupled with the desire to die at home highlights the growing demand for community palliative care. This review provides an understanding of the unique experiences and perceptions of older adults receiving community palliative care. INCLUSION CRITERIA This review appraised qualitative studies examining the perceptions and experiences of older adults (65 years or older) receiving community palliative care. Eligible research designs included, but were not limited to, ethnography, grounded theory, and phenomenology. METHODS A search of the literature across CINAHL (EBSCOhost), MEDLINE (Ovid), Embase (Ovid SP), Web of Science Core Collection, and Scopus databases was undertaken in July 2021 and updated November 1, 2022. Included studies were published in English between 2000 and 2022. The search for unpublished studies included ProQuest Dissertations and Theses. Study selection, quality appraisal, and data extraction were performed by 2 independent reviewers. Findings from the included studies were pooled using the JBI meta-aggregation method. RESULTS Nine qualitative studies involving 98 participants were included in this review. A total of 100 findings were extracted and grouped into 14 categories. Four synthesized findings evolved from these categories: i) Older persons receiving palliative care in the community recognize that their life is changed and come to terms with their situation, redefining what is normal, appreciating life lived, and celebrating the life they still have by living one day at a time; ii) Older persons receiving palliative care in the community experience isolation and loneliness exacerbated by their detachment and withdrawal from and by others; iii) Older persons receiving palliative care in the community face major challenges managing prevailing symptoms, medication management difficulties, and costs of medical care and equipment; and iv) Older persons want to receive palliative care and to die at home; however, this requires both informal and formal supports, including continuity of care, good communication, and positive relationships with health care providers. CONCLUSIONS Experiences and perceptions of community palliative care vary among older adults. These are influenced by the individual's expectations and needs, available services, and cost. Older adults' input into decision-making about their care is fundamental to their needs being met and is contingent on effective communication between the patient, family, and staff across services. Policy that advocates for trained palliative care staff to provide care is necessary to optimize care outcomes, while collaboration between staff and services is critical to enabling holistic care, managing symptoms, and providing compassionate care and support.
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Affiliation(s)
- Antoinette Cotton
- School of Nursing and Midwifery, Western Sydney University, Sydney, NSW, Australia
- The New South Wales Centre for Evidence Based Health Care: A JBI Affiliated Group, Western Sydney University, Penrith, NSW, Australia
| | - Jan Sayers
- School of Nursing and Midwifery, Western Sydney University, Sydney, NSW, Australia
| | - Heidi Green
- School of Health and Society, University of Wollongong, Wollongong, NSW, Australia
- Centre for Transformative Nursing, Midwifery and Health Research: A JBI Affiliated Group, The University of Newcastle, Gosford, NSW, Australia
| | | | | | - Nqobile Sikhosana
- The New South Wales Centre for Evidence Based Health Care: A JBI Affiliated Group, Western Sydney University, Penrith, NSW, Australia
| | - Ritin Fernandez
- Centre for Transformative Nursing, Midwifery and Health Research: A JBI Affiliated Group, The University of Newcastle, Gosford, NSW, Australia
- University of Newcastle, Newcastle, NSW, Australia
| | - Jann Foster
- School of Nursing and Midwifery, Western Sydney University, Sydney, NSW, Australia
- The New South Wales Centre for Evidence Based Health Care: A JBI Affiliated Group, Western Sydney University, Penrith, NSW, Australia
- University of Canberra, Canberra, ACT, Australia
- Ingham Research Institute, Liverpool, NSW, Australia
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Castelo-Loureiro A, Perez-de-Acha A, Torres-Perez AC, Cunha V, García-Valdés P, Cárdenas-Reyes P, Soto-Perez-de-Celis E. Delivering Palliative and Supportive Care for Older Adults with Cancer: Interactions between Palliative Medicine and Geriatrics. Cancers (Basel) 2023; 15:3858. [PMID: 37568674 PMCID: PMC10417379 DOI: 10.3390/cancers15153858] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 07/03/2023] [Revised: 07/27/2023] [Accepted: 07/27/2023] [Indexed: 08/13/2023] Open
Abstract
The world's population is aging rapidly, with projections indicating that by 2050 one in six people will be aged ≥65 years. As a result, the number of cancer cases in older people is expected to increase significantly. Palliative care is an essential component of cancer care with a direct impact on quality of life. However, older adults with cancer often suffer from multiple comorbidities, cognitive impairment, and frailty, posing unique challenges in the delivery of palliative care. The complex healthcare needs of older patients with cancer therefore require a comprehensive assessment, including a geriatric evaluation. Collaboration between geriatrics and palliative care can offer a solution to the challenges faced by older people with cancer, since this is a population with overlapping concerns for both disciplines. This review highlights the importance of palliative care for older adults with cancer and the benefits of a multidisciplinary approach. It also addresses the coordination of palliative care and geriatrics for specific symptom management and decision making.
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Affiliation(s)
| | - Andrea Perez-de-Acha
- Department of Geriatrics, Instituto Nacional de Ciencias Médicas y Nutrición Salvador Zubirán, Mexico City 14080, Mexico
| | - Ana Cristina Torres-Perez
- Department of Geriatrics, Instituto Nacional de Ciencias Médicas y Nutrición Salvador Zubirán, Mexico City 14080, Mexico
| | - Vanessa Cunha
- School of Medicine, University of Toronto, Toronto, ON M5S 3G5, Canada
| | - Paola García-Valdés
- Department of Geriatrics, Instituto Nacional de Ciencias Médicas y Nutrición Salvador Zubirán, Mexico City 14080, Mexico
- Department of Palliative Care, Hospital Gea González, Mexico City 14080, Mexico
| | - Paula Cárdenas-Reyes
- Department of Geriatrics, Instituto Nacional de Ciencias Médicas y Nutrición Salvador Zubirán, Mexico City 14080, Mexico
| | - Enrique Soto-Perez-de-Celis
- Department of Geriatrics, Instituto Nacional de Ciencias Médicas y Nutrición Salvador Zubirán, Mexico City 14080, Mexico
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Wang XY, Wang J, Zhang S. Analysis of load status and management strategies of main caregivers of patients with malignant tumors of digestive tract. World J Gastrointest Oncol 2023; 15:973-978. [PMID: 37389114 PMCID: PMC10302986 DOI: 10.4251/wjgo.v15.i6.973] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.5] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 03/17/2023] [Revised: 04/12/2023] [Accepted: 04/23/2023] [Indexed: 06/14/2023] Open
Abstract
Caregiver load refers to the subjective and objective negative impact of caregivers in the care of patients, and excessive load will have a serious impact on patients and caregivers themselves and can reduce their quality of life. For the main caregivers, it not only needs to care for the patients in life and daily life, but also needs to pay the cost of treatment for the patients, coupled with the need to carry out their own original work, life, etc. excessive life pressure, economic pressure, work pressure, emotional pressure, etc. lead to heavy load of the main caregivers, which can easily cause caregivers to have different degrees of psychological problems, which will cause serious adverse effects on the caregivers themselves and cancer patients, not conducive to the construction of a harmonious family and society. This article analyzes the current situation of primary caregiver burden in patients with gastrointestinal malignant tumors, analyzes its influencing factors, and specifies specific treatment strategies. It is hoped to provide scientific guidance for later related research and application.
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Affiliation(s)
- Xiao-Yan Wang
- Emergency Department, West China Hospital of Sichuan University, Chengdu 610000, Sichuan Province, China
| | - Jing Wang
- ENT (Ear-Nose-Throat) Department, Chengdu Hospital of Combination of Chinese Traditional and Western Medicine, Chengdu 610000, Sichuan Province, China
| | - Shu Zhang
- Emergency Department, West China Hospital of Sichuan University, Chengdu 610000, Sichuan Province, China
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Challenges and Facilitators for Psychosocial Support when Aging and Dying in Place: A Rapid Review of the Literature. Can J Aging 2023; 42:135-153. [PMID: 35762308 DOI: 10.1017/s071498082200023x] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/08/2022] Open
Abstract
Most seniors in Canada live at home and consistently indicate that they prefer to stay there for as long as possible. Consequently, this desire places increasing pressure on supports such as informal caregivers and community services. The current rapid review set out to examine the psychosocial aspects of aging and dying in place that point to gaps in programs and services to support this preference. We searched PubMed, PsycInfo, and Google Scholar for peer-reviewed entries, and identified 42 articles for analysis, which we charted on a form we created and tested. Lack of attention to the whole person, lack of preparation for the journey ahead, and difficulties establishing collaborative and trusting relationships were, broadly, the challenges identified. A blend of initiatives in the community combined with an integrated palliative approach to care may mitigate some of the challenges that limit options for aging and dying in place.
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Rees-Roberts M, Williams P, Hashem F, Brigden C, Greene K, Gage H, Goodwin M, Silsbury G, Wee B, Barclay S, Wilson PM, Butler C. Hospice at Home services in England: a national survey. BMJ Support Palliat Care 2021; 11:454-460. [PMID: 31722982 PMCID: PMC8606452 DOI: 10.1136/bmjspcare-2019-001818] [Citation(s) in RCA: 13] [Impact Index Per Article: 3.3] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 03/07/2019] [Revised: 10/14/2019] [Accepted: 10/28/2019] [Indexed: 11/22/2022]
Abstract
OBJECTIVE Hospice at Home (HAH) services aim to enable patients to be cared for and die at home, if that is their choice and achieve a 'good death'. A national survey, in 2017, aimed to describe and compare the features of HAH services and understand key enablers to service provision. METHODS Service managers of adult HAH services in the 'Hospice UK' and National Association for Hospice at Home directories within England were invited to participate. Information on service configuration, referral, staffing, finance, care provision and enablers to service provision were collected by telephone interview. RESULTS Of 128 services invited, 70 (54.7%) provided data. Great diversity was found. Most services operated in mixed urban/rural (74.3%) and mixed deprivation (77.1%) areas and provided hands-on care (97.1%), symptom assessment and management (91.4%), psychosocial support (94.3%) and respite care (74.3%). Rapid response (within 4 hours) was available in 65.7%; hands-on care 24 hours a day in 52.2%. Charity donations were the main source of funding for 71.2%. Key enablers for service provision included working with local services (eg, district nursing, general practitioner services), integrated health records, funding and anticipatory care planning. Access to timely medication and equipment was critical. CONCLUSION There is considerable variation in HAH services in England. Due to this variation it was not possible to categorise services into delivery types. Services work to supplement local care using a flexible approach benefitting from integration and funding. Further work defining service features related to patient and/or carer outcomes would support future service development.
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Affiliation(s)
| | - Peter Williams
- Department of Mathematics, University of Surrey, Guildford, UK
| | - Ferhana Hashem
- Centre for Health Services Studies, University of Kent, Canterbury, UK
| | - Charlotte Brigden
- Centre for Health Services Studies, University of Kent, Canterbury, UK
- Hospice at Home, Pilgrims Hospices in East Kent, Canterbury, UK
| | - Kay Greene
- Research Lead, National Association for Hospice at Home, Fareham, UK
- Hospice at Home, Mary Ann Evans Hospice, Nuneaton, Warwickshire, UK
| | - Heather Gage
- Surrey Health Economics Centre, University of Surrey, Guildford, UK
| | - Mary Goodwin
- Centre for Health Services Studies, University of Kent, Canterbury, UK
| | - Graham Silsbury
- Centre for Health Services Studies, University of Kent, Canterbury, UK
| | - Bee Wee
- Palliative Medicine, Oxford University Hospitals NHS Trust, Oxford, UK
| | - Stephen Barclay
- Department of Public Health and Primary Care, University of Cambridge, Cambridge, UK
| | - Patricia M Wilson
- Centre for Health Services Studies, University of Kent, Canterbury, UK
| | - Claire Butler
- Centre for Health Services Studies, University of Kent, Canterbury, UK
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Konradsen H, Brødsgaard A, Østergaard B, Svavarsdóttir E, Dieperink KB, Imhof L, Luttik ML, Mahrer-Imhof R, García-Vivar C. Health practices in Europe towards families of older patients with cancer: a scoping review. Scand J Caring Sci 2021; 35:375-389. [PMID: 32291782 DOI: 10.1111/scs.12855] [Citation(s) in RCA: 13] [Impact Index Per Article: 3.3] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 10/24/2019] [Revised: 03/10/2020] [Accepted: 03/17/2020] [Indexed: 12/30/2022]
Abstract
INTRODUCTION In Europe, cancer is one of the predominant causes of mortality and morbidity among older people aged over 65. A diagnosis of cancer can imply a negative impact on the quality of life of the older patients and their families. Despite research examining the impact of cancer on the family, it is unclear what kind of information is available about the types of clinical practice towards older patients with cancer and their families. The aim is to determine the extent, range and variety of research in Europe describing health practices towards families of older patients with cancer and to identify any existing gaps in knowledge. METHODS Scoping review. RESULTS A total of 12 articles were included, showing that family interventions are generally based on end-of-life care. Most studies used a qualitative approach and involved different types of family member as participants. Most studies were conducted in the UK. CONCLUSIONS Review findings revealed limited knowledge about health practices in Europe towards families with an older patient with cancer. This review indicates a need to increase family-focused research that examines health practices that meet the needs of families of older patients with cancer. Seeing cancer as a chronic disease, there is an urgent need for the implementation of family-focused interventions.
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Affiliation(s)
- Hanne Konradsen
- Department of Gastroenterology, Herlev and Gentofte Hospital, Hellerup, Denmark
- Department of Clinical Medicine, Faculty of Health and Medical Sciences, University of Copenhagen, Copenhagen, Denmark
- Department of Neurobiology, Care Sciences and Society, NVS, Karolinska Institutet, Solna, Sweden
| | - Anne Brødsgaard
- Department of Paediatrics and Adolescent Medicine, Copenhagen University Hospital Amager Hvidovre, Copenhagen, Denmark
- Section for Nursing, Faculty of Health, Aarhus University, Aarhus, Denmark
| | - Birte Østergaard
- Department of Clinical Research, University of Southern Denmark, Odense, Denmark
| | - Erla Svavarsdóttir
- Faculty of Nursing, School of Health Sciences, University of Iceland, Reykjavík, Iceland
| | - Karin B Dieperink
- Department of Clinical Research, University of Southern Denmark, Odense, Denmark
- Department of Oncology and Academy of Geriatric Cancer Research (AgeCare), Odense University Hospital, Odense, Denmark
| | - Lorenz Imhof
- Community-Based Care, Nursing Science & Care Ltd, Winterthur, Switzerland
| | - Marie Louise Luttik
- Family Care, Hanze University of Applied Sciences, Groningen, the Netherlands
| | - Romy Mahrer-Imhof
- Community-Based Care, Nursing Science & Care Ltd, Winterthur, Switzerland
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11
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Wu MP, Tsao LI, Huang SJ, Liu CY. Development of the Readiness for Home-Based Palliative Care Scale (RHBPCS) for Primary Family Caregivers. Healthcare (Basel) 2021; 9:healthcare9050608. [PMID: 34069437 PMCID: PMC8159133 DOI: 10.3390/healthcare9050608] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 04/21/2021] [Revised: 05/14/2021] [Accepted: 05/17/2021] [Indexed: 11/16/2022] Open
Abstract
In Chinese or Eastern society, most end-of-life (EOL) patients still choose to die at home. However, primary family caregivers usually do not prepare themselves to face the death of patients. Therefore, a measurement of the readiness for home-based palliative care for primary family caregivers is needed. In this study, the readiness for home-based palliative care scale (RHBPCS) for primary family caregivers was developed to assess the readiness of primary family caregivers. This study recruited 103 participants from five branches of one municipal hospital system. The reliability and validity of the RHBPCS was evaluated using expert validity examination, confirmatory factor analysis (CFA), and item analysis. The results showed that the RHBPCS had strong goodness-of-fit and good reliability and validity. In summary, the RHBPCS is suggested for assessing the readiness for home-based palliative care of primary family caregivers.
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Affiliation(s)
- Meng-Ping Wu
- Department of Nursing, Taipei City Hospital, Taipei 103, Taiwan;
- School of Nursing, National Taipei University of Nursing and Health Sciences, Taipei 112, Taiwan
| | - Lee-Ing Tsao
- School of Nursing, National Taipei University of Nursing and Health Sciences, Taipei 112, Taiwan (retired at 2019);
| | - Sheng-Jean Huang
- Superintendent Office, Taipei City Hospital, Taipei 103, Taiwan;
- Department of Surgery, College of Medicine, National Taiwan University, Taipei 100, Taiwan
| | - Chieh-Yu Liu
- School of Nursing, National Taipei University of Nursing and Health Sciences, Taipei 112, Taiwan
- Biostatistical Consultant Laboratory, Department of Speech Language Pathology and Audiology, National Taipei University of Nursing and Health Sciences, Taipei 112, Taiwan
- Department of Teaching and Research, Taipei City Hospital, Taipei 103, Taiwan
- Correspondence: ; Tel.: +886-2-2822-7101 (ext. 3312)
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12
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Cai Y, Simons A, Toland S, Zhang J, Zheng K. Informal caregivers' quality of life and management strategies following the transformation of their cancer caregiving role: A qualitative systematic review. Int J Nurs Sci 2021; 8:227-236. [PMID: 33997139 PMCID: PMC8105556 DOI: 10.1016/j.ijnss.2021.03.006] [Citation(s) in RCA: 14] [Impact Index Per Article: 3.5] [Reference Citation Analysis] [Abstract] [Key Words] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 10/09/2020] [Revised: 01/28/2021] [Accepted: 03/11/2021] [Indexed: 12/14/2022] Open
Abstract
Objectives Globally, informal caregivers caring for cancer patients meet challenges within their caregiving role, which significantly influence their quality of life. This qualitative systematic review aimed to analyze how cancer caregiving influence the quality of life of informal caregivers and the management strategies of informal caregivers for their role as cancer caregivers. Methods Following the enhancing transparency in reporting the synthesis of qualitative research (ENTREQ) statement, Wanfang database, the China National Knowledge Infrastructure (CNKI), CINAHL, MEDLINE, PubMed, Cochrane Library, PsycARTICLES and PsycINFO, and grey literature in English and Chinese from 1 May 2009 to 31 December 2019 were searched. Quality of included studies was assessed by the Critical Appraisal Skills Programme (2018) Qualitative Checklist and thematic synthesis was conducted. Results Of the 8,945 studies identified, 6 studies met the inclusion criteria. One analytical theme relating to the QoL of informal caregivers following cancer caregiving was identified: "challenges of caregiving". In terms of the management strategies to the role of cancer caregivers, two analytical themes were identified: "self-adjustment" and "seeking for formal and informal support". Conclusions Cancer caregiving influences informal caregivers' QoL significantly and informal caregivers develop diverse coping strategies to deal with the difficulties occurred while balancing the relationship between their own lives and caregiving. However, professional and policy support remain inadequate for informal caregivers that require the need for improvement in terms of health care professionals and policymakers.
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Affiliation(s)
- Yingying Cai
- Department of Chemotherapy, Jieyang People's Hospital, Jieyang, Guangdong, China
| | - Alison Simons
- School of Nursing and Midwifery, Faculty of Health, Education and Life Sciences, Birmingham City University, Birmingham, United Kingdom
| | - Samantha Toland
- School of Nursing and Midwifery, Faculty of Health, Education and Life Sciences, Birmingham City University, Birmingham, United Kingdom
| | - Junfeng Zhang
- Department of Nursing Administration, Dongguan Songshanhu Central Hospital, Dongguan, Guangdong, China
| | - Kexin Zheng
- Department of Mental Health, Zhuhai City Center of Chronic Disease Control, Zhuhai, Guangdong, China
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13
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Ward A, Sixsmith J, Spiro S, Graham A, Ballard H, Varvel S, Youell J. Carer and staff perceptions of end-of-life care provision: case of a hospice-at-home service. Br J Community Nurs 2021; 26:30-36. [PMID: 33356935 DOI: 10.12968/bjcn.2021.26.1.30] [Citation(s) in RCA: 2] [Impact Index Per Article: 0.5] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/11/2022]
Abstract
People requiring palliative care should have their needs met by services acting in accordance with their wishes. A hospice in the south of England provides such care via a 24/7 hospice at home service. This study aimed to establish how a nurse-led night service supported patients and family carers to remain at home and avoid hospital admissions. Semi-structured interviews were carried out with family carers (n=38) and hospice-at-home staff (n=9). Through night-time phone calls and visits, family carers felt supported by specialist hospice staff whereby only appropriate hospital admission was facilitated. Staff provided mediation between family carer and other services enabling more integrated care and support to remain at home. A hospice-at-home night service can prevent unnecessary hospital admissions and meet patient wishes through specialist care at home.
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Affiliation(s)
- Alison Ward
- Senior Researcher, University of Northampton, Northampton
| | - Judith Sixsmith
- Professor, School of Health Sciences, University of Dundee, Dundee, Scotland
| | - Stephen Spiro
- Professor of Respiratory Medicine and Chair Board of Trustees
| | - Anne Graham
- Clinical Nurse Specialist, Night Team; Rennie Grove Hospice Care, Tring
| | | | - Sue Varvel
- Director of Nursing & Clinical Services; Rennie Grove Hospice Care, Tring
| | - Jane Youell
- Research Fellow, University of Leeds, School of Healthcare, Leeds
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14
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The "PalliActive Caregivers" Intervention for Caregivers of Patients With Cancer in Palliative Care: A Feasibility Pilot Study. J Hosp Palliat Nurs 2020; 22:495-503. [PMID: 33044421 DOI: 10.1097/njh.0000000000000696] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.2] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 10/23/2022]
Abstract
This pilot study aimed to assess the feasibility and possible effects of the "PalliActive Caregivers," nursing intervention, on the uncertainty in illness and quality of life of family caregivers of patients with cancer receiving palliative care. This pilot study used a randomized controlled design. The participants were 80 family caregivers. The experimental group received the novel "PalliActive Caregivers" intervention. Data were collected using a sociodemographic form, the Uncertainty in Illness Scale, the Quality of Life scale, and an Intervention satisfaction questionnaire. The caregivers who received the intervention "PalliActive Caregivers" reported a high degree of satisfaction (9.74 on a 10-point scale). The intervention showed a significant decrease in uncertainty regarding illness in the experimental group (P = .009), as well as a significant decrease in the psychological well-being of quality of life within the experimental and control groups, before and after the intervention (P = .013, P = .010). It is recommended that future studies using the "PalliActive Caregivers" intervention examine the effects on other variables such as the burden of patient's symptoms, caregiver burden and rewards, self-efficacy in symptom management, competence, unmet needs, and satisfaction with care.
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15
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Fee A, Muldrew D, Slater P, Payne S, McIlfatrick S, McConnell T, Finlay DA, Hasson F. The roles, responsibilities and practices of healthcare assistants in out-of-hours community palliative care: A systematic scoping review. Palliat Med 2020; 34:976-988. [PMID: 32538311 PMCID: PMC7448826 DOI: 10.1177/0269216320929559] [Citation(s) in RCA: 10] [Impact Index Per Article: 2.0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 11/15/2022]
Abstract
BACKGROUND Access to community palliative care 'out-of-hours' - defined as care provided after the normal hours of work - is advocated globally. Healthcare assistants, who provide care under the direction of a qualified professional, are increasingly employed to help deliver such care, yet there is a little understanding regarding their role, responsibilities or contribution. AIM The aim of this study was to identify the roles, responsibilities and contributions of healthcare assistants in out-of-hours community palliative care. DESIGN Scoping review. DATA SOURCES Five bibliographic databases (CINAHL, MEDLINE, EMBASE, PsycINFO and Scopus) and grey literature were searched using a predefined search strategy. The review was conducted in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews statement. RESULTS The search yielded six papers using quantitative, qualitative and mixed methods. Results highlighted a lack of recognition of the role and contribution of healthcare assistants. A concurrent theme was that healthcare assistants continually monitored and responded to patient's and family's physical and emotional needs; there was also self-reported evidence indicating patient and family benefit, such as maintaining a sense of normality and support to remain at home. DISCUSSION This review highlighted a dearth of evidence relating to the healthcare assistant role in out-of-hours palliative care. Limited evidence suggests they play a role, but that it is hidden and undervalued. Such invisibility will have a significant impact on the planning and delivery of out-of-hours palliative care. Future research is needed on role development for the benefit of patients and caregivers.
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Affiliation(s)
- Anne Fee
- Institute of Nursing and Health Research, Ulster University, Newtownabbey, UK
| | - Deborah Muldrew
- Institute of Nursing and Health Research, Ulster University, Newtownabbey, UK
| | - Paul Slater
- Institute of Nursing and Health Research, Ulster University, Newtownabbey, UK
| | - Sheila Payne
- International Observatory on End of Life Care, Lancaster University, Lancaster, UK
| | - Sonja McIlfatrick
- Institute of Nursing and Health Research, Ulster University, Newtownabbey, UK
- Marie Curie Hospice, Belfast, Belfast, UK
| | - Tracey McConnell
- Marie Curie Hospice, Belfast, Belfast, UK
- School of Nursing and Midwifery, Queen’s University Belfast, Belfast, UK
| | - Dori-Anne Finlay
- Institute of Nursing and Health Research, Ulster University, Newtownabbey, UK
| | - Felicity Hasson
- Institute of Nursing and Health Research, Ulster University, Newtownabbey, UK
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16
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Hall A, Ewing G, Rowland C, Grande G. A drive for structure: A longitudinal qualitative study of the implementation of the Carer Support Needs Assessment Tool (CSNAT) intervention during hospital discharge at end of life. Palliat Med 2020; 34:1088-1096. [PMID: 32491967 PMCID: PMC7388143 DOI: 10.1177/0269216320930935] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.2] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 11/16/2022]
Abstract
BACKGROUND Informal carers are essential in enabling discharge home from hospital at end of life and supporting palliative patients at home, but are often ill-prepared for the role. Carers' support needs are rarely considered at discharge. If carers are less able to cope with home care, patient care may suffer and readmission may become more likely. AIM To investigate the implementation of an evidence-based Carer Support Needs Assessment Tool (CSNAT) intervention to support carers during hospital discharge at end of life. DESIGN Longitudinal qualitative study with thematic analysis. SETTING/PARTICIPANTS One National Health Service Trust in England: 12 hospital practitioners, one hospital administrator and four community practitioners. We provided training in CSNAT intervention use and implementation. Practitioners delivered the intervention for 6 months. Data collection was conducted in three phases: (1) pre-implementation interviews exploring understandings, anticipated benefits and challenges of the intervention; (2) observations of team meetings and review of intervention procedures and (3) follow-up interviews exploring experiences of working with the intervention. RESULTS Despite efforts from practitioners, implementation was challenging. Three main themes captured facilitators and barriers to implementation: (1) structure and focus within carer support; (2) the 'right' people to implement the intervention and (3) practical implementation challenges. CONCLUSIONS Structure and focus may facilitate implementation, but the dominance of outcomes measurement and performance metrics in health systems may powerfully frame perceptions of the intervention and implementation decisions. There is uncertainty over who is best-placed or responsible for supporting carers around hospital discharge, and challenges in connecting with carers prior to discharge.
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Affiliation(s)
- Alex Hall
- School of Health Sciences, University of Manchester, Manchester, UK.,National Institute for Health Research (NIHR) Collaboration for Leadership in Applied Health Research and Care Greater Manchester (CLAHRC GM), Salford Royal Foundation NHS Trust, Salford, UK
| | - Gail Ewing
- Centre for Family Research, University of Cambridge, Cambridge, UK
| | - Christine Rowland
- School of Health Sciences, University of Manchester, Manchester, UK.,National Institute for Health Research (NIHR) Collaboration for Leadership in Applied Health Research and Care Greater Manchester (CLAHRC GM), Salford Royal Foundation NHS Trust, Salford, UK
| | - Gunn Grande
- School of Health Sciences, University of Manchester, Manchester, UK.,National Institute for Health Research (NIHR) Collaboration for Leadership in Applied Health Research and Care Greater Manchester (CLAHRC GM), Salford Royal Foundation NHS Trust, Salford, UK
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17
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Gül Ş, Demir Karabulut S, Eren H, Durmuş İskender M, Göçmen Baykara Z, Keles Ş, Yıldız A, Yalim NY. Nursing Students' Experiences With Death and Terminal Patients During Clinical Education. OMEGA-JOURNAL OF DEATH AND DYING 2020; 85:628-649. [PMID: 32838653 DOI: 10.1177/0030222820950510] [Citation(s) in RCA: 8] [Impact Index Per Article: 1.6] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 01/06/2023]
Abstract
The aim of this study is to explore nursing students' experiences with death and terminal patients during clinical education. A secondary analysis of qualitative data that were collected through 11 focus group interviews with nursing students was performed. Data obtained from the interviews were analyzed using thematic analysis. There were a total of 9 themes across 3 contexts. Data were grouped under the following themes: feelings experienced when encountering death for the first time, reactions to the first encounter with death, factors affecting the reactions to death, involvement in terminal patient care, being informed about the physical process that terminal patients are going through, students' approach toward terminal patients and their relatives, health professionals' approach toward terminal/dying patients/their relatives, changes in the ideas about death, and changes in the ideas about terminal/dying patients. The study shows a lack of guidance on the part of teachers who also avoid patients and families who are considered terminally ill.
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Affiliation(s)
- Şenay Gül
- Fundamentals of Nursing Department, Faculty of Nursing, Hacettepe University, Ankara, Turkey
| | - Seyhan Demir Karabulut
- Department of Medical Ethics and History, Faculty of Medicine, Baskent University, Ankara, Turkey
| | - Handan Eren
- Department of Nursing, Health Sciences Faculty, Yalova University, Yalova, Turkey
| | | | | | - Şükrü Keles
- Department of Medical Ethics and History, Faculty of Medicine, Karadeniz Technical University, Trabzon, Turkey
| | - Abdullah Yıldız
- Department of Medical Ethics and History, Faculty of Medicine, Ankara University, Ankara, Turkey
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18
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Heidari H, Mardani-Hamooleh M, Amiri M. Perceived factors to providing palliative care for patients with cancer - a qualitative systematic review. Oncol Rev 2020; 14:463. [PMID: 32477469 PMCID: PMC7246343 DOI: 10.4081/oncol.2020.463] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 11/03/2019] [Accepted: 03/20/2020] [Indexed: 12/03/2022] Open
Abstract
Palliative care (PC) is one of the necessary cares given throughout a patient’s experience with cancer. The aim of this study was to identify the perceived factors to providing PC for patients with cancer. Our study was a systematic review of qualitative literature. To this end, electronic databases, including CINAHL, PubMed, PsycINFO, Ovid, and Web of Science as well as Persian databases were searched and qualitative studies on the role of PC in patients with cancer published between Jan 2008 and Dec 2017 were selected. Generally, 12 studies were reviewed. A thematic synthesis approach was used to analyze the data. Exploring the selected articles, the findings on the perceived factors to providing PC for patients with cancer were categorized into three themes, including organizational factors, ethical factors, and psychological factors. This qualitative systematic review expands our knowledge about factors influencing the provision of PC for patients with cancer. It is necessary for health system managers and caregivers to pay attention to all aforesaid factors in order to improve PC for cancer patients.
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Affiliation(s)
- Haydeh Heidari
- Social Determinants of Health Research Center, Faculty of Nursing and Midwifery, Shahrekord University of Medical Sciences, Shahrekord, Iran
| | - Marjan Mardani-Hamooleh
- Nursing Care Research Center, Faculty of Nursing and Midwifery, Iran University of Medical Sciences, Tehran, Iran
| | - Masoud Amiri
- Erasmus Medical Center, Department of Epidemiology, Rotterdam, The Netherlands
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19
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Hov R, Bjørsland B, Kjøs BØ, Wilde-Larsson B. A sense of security in palliative homecare in a Norwegian municipality; dyadic comparisons of the perceptions of patients and relatives - a quantitative study. BMC Palliat Care 2020; 19:7. [PMID: 31926557 PMCID: PMC6954541 DOI: 10.1186/s12904-020-0513-7] [Citation(s) in RCA: 6] [Impact Index Per Article: 1.2] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Journal Information] [Subscribe] [Scholar Register] [Received: 12/14/2018] [Accepted: 01/07/2020] [Indexed: 01/10/2023] Open
Abstract
BACKGROUND As palliative care increasingly takes place in patients' homes, perceptions of security among patients in the late palliative phase and their relatives are important. AIM To describe and compare patient-relative dyads regarding their perceptions of security in palliative homecare, including the perceived security of the actual care given to the patients, as well as the subjective importance of that care. METHODS A cross sectional questionnaire study including 32 patient-relative dyads was conducted in an urban municipality in Norway. Patients were in a late palliative phase and received palliative homecare. Each patient proposed one relative. Data were collected using a modified version of the Quality from the Patients' Perspective instrument (QPP), which focuses on security and comprises three dimensions: medical-technical competence, identity-orientation approach and physical-technical conditions. Context-specific scales containing four aspects (competence, continuity, coordination/cooperation, availability) were added. The instrument contains two response scales; perceived reality (PR) and subjective importance (SI). Data were analysed by descriptive statistics, Chi-squared test, T-test and Wilcoxon's signed rank test. RESULTS Patients had high mean scores on the PR-scale for the sense of security in palliative homecare in the dimensions of medical-technical competence and physical-technical conditions. There were three low mean scores on the PR-scale: the aspect of continuity from patients and the aspects of continuity and coordination/cooperation from relatives. The patients scored the SI scale statistically significantly higher than the PR scale in the identity-orientation approach dimension and in the aspect of continuity, while relatives did so in all dimensions and aspects. The intra-dyadic patient-relative comparisons show statistically significant lower scores from relatives on the PR-scale in the dimensions of medical-technical competence, physical-technical conditions, identity-orientation approach and the aspect coordination/cooperation. CONCLUSIONS There are several statistically significant differences between patients and relatives' perceptions of security in the palliative homecare received (PR) compared with the subjective importance of the care (SI) and statistically significant differences in the patient-relative dyads in PR. A relatively mutual sense of security in palliative homecare is important for patient-relative dyads, as relatives often provide care and act as patients' spokespersons. What they assess as important can guide the development of palliative homecare.
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Affiliation(s)
- Reidun Hov
- Department of Nursing, Inland Norway University of Applied Sciences, Elverum, Norway. .,Centre for Development of Institutional and Home Care Services, Hamar Municipality, Hedmark, Norway.
| | - Bente Bjørsland
- Department of Nursing, Inland Norway University of Applied Sciences, Elverum, Norway
| | - Bente Ødegård Kjøs
- Centre for Development of Institutional and Home Care Services, Hamar Municipality, Hedmark, Norway
| | - Bodil Wilde-Larsson
- Department of Nursing, Inland Norway University of Applied Sciences, Elverum, Norway.,Department of Health Science, Discipline of Nursing Science, Karlstad University, Karlstad, Sweden
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20
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Hashem F, Brigden C, Wilson P, Butler C. Understanding what works, why and in what circumstances in hospice at home services for end-of-life care: Applying a realist logic of analysis to a systematically searched literature review. Palliat Med 2020; 34:16-31. [PMID: 31849270 DOI: 10.1177/0269216319867424] [Citation(s) in RCA: 10] [Impact Index Per Article: 2.0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 02/01/2023]
Abstract
BACKGROUND We have undertaken a systematically searched literature review using a realist logic of analysis to help synthesise the diverse range of literature available on hospice at home services. AIM To find out in the existing literature what features of hospice at home models work best, for whom and under what circumstances. DESIGN A realist logic of analysis was applied to synthesise the evidence focusing on mechanisms by which an intervention worked (or did not work). An initial programme theory was developed using the National Association for Hospice at Home standards, Normalisation Process Theory and through refinement using stakeholder engagement. DATA SOURCES PubMed, Science Direct, AMED, BNI, CINAHL, EMBASE, Health Business Elite, HMIC, Medline, PsychINFO, SCOPUS, Web of Science, DARE, Google Scholar, NHS Evidence, NIHR CRN portfolio database, NIHR journal library of funded studies, including searches on websites of relevant professional bodies (August 2014, June 2017, June 2019). RESULTS Forty-nine papers were reviewed, of which 34 contributed evidence to at least one of the eight theory areas: marketing and referral, sustainable funding model, service responsiveness and availability, criteria for service admission, knowledge and skills of care providers, integration and coordination, anticipatory care, support directed at carers. CONCLUSIONS Our literature review showed how it was possible to develop a coherent framework and test it against 34 published papers and abstracts. Central to this review was theory building, and as further evidence emerges, our programme theories can be refined and tested against any new empirical evidence.
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Affiliation(s)
- Ferhana Hashem
- Centre for Health Services Studies, University of Kent, Canterbury, UK
| | - Charlotte Brigden
- Centre for Health Services Studies, University of Kent, Canterbury, UK.,Pilgrim's Hospice, Canterbury, UK
| | - Patricia Wilson
- Centre for Health Services Studies, University of Kent, Canterbury, UK
| | - Claire Butler
- Centre for Health Services Studies, University of Kent, Canterbury, UK
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21
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Karikawa M, Nakatani H. Development of a home-visit nursing scale for helping spousal caregivers of terminal cancer patients develop positive perspectives of their caregiving experiences: a cross-sectional study. BMJ Open 2019; 9:e031057. [PMID: 31843825 PMCID: PMC6924790 DOI: 10.1136/bmjopen-2019-031057] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 11/03/2022] Open
Abstract
OBJECTIVE Home-visit nurses play a key role in supporting the spouses of terminal cancer patients and encouraging positive perspectives of the caregiving experience. This study aimed to develop a scale to support nurses in self-assessing their practice around this important role. DESIGN Cross-sectional questionnaire study. SETTING The Home Nursing Scale to Help Spousal Caregivers (HNS-HSC) questionnaire for self-assessment of home-visit nursing to spouses was developed based on interviews with spouses and literature reviews. PARTICIPANTS Overall, 1500 home-visit nurses nationwide who had experience in supporting spousal caregivers and their patients in the predeath and postdeath periods were approached for participation. MAIN OUTCOME MEASURE Planned exploratory and confirmatory factor analyses were used to assess the underlying dimensions of the HNS-HSC; Cronbach's α was used to determine the reliability. The Japanese version of Frommelt Attitude Toward Care of the Dying Scale Form B (FAT-COD-B-J) and Grief Care scale were administered to assess convergent and discriminant validity. RESULTS Exploratory and confirmatory factor analyses identified 26 items on five factors: 'helping spouses plan their futures' 'helping caregivers alleviate any regrets regarding their care', 'understanding the bond between a couple', 'providing support for anticipatory grief', and 'addressing spousal caregivers' emotions after their spouses' deaths'. The final model showed acceptable goodness-of-fit indices. The Cronbach's α for the entire scale was 0.949 and exceeded 0.822 for each factor. The correlation coefficient with the FAT-COD-B-J, which served as an external validation, was 0.35. The correlation coefficients for the three grief care scales were 0.64, 0.45 and 0.72, respectively. CONCLUSIONS This scale is a reliable and valid tool for visiting nurses to self-assess their knowledge, skills and practice around helping spousal caregivers. By using this scale, it is expected to change nursing practice in pursuit of improving quality of life of spouses.
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Affiliation(s)
- Mari Karikawa
- Graduate School of Biomedical & Health Sciences, Hiroshima University, Hiroshima, Japan
| | - Hisae Nakatani
- Graduate School of Biomedical & Health Sciences,Division of Nursing Science, Hiroshima University, Hiroshima, Japan
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22
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Tarberg AS, Kvangarsnes M, Hole T, Thronæs M, Madssen TS, Landstad BJ. Silent voices: Family caregivers' narratives of involvement in palliative care. Nurs Open 2019; 6:1446-1454. [PMID: 31660172 PMCID: PMC6805263 DOI: 10.1002/nop2.344] [Citation(s) in RCA: 43] [Impact Index Per Article: 7.2] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Journal Information] [Subscribe] [Scholar Register] [Received: 03/31/2019] [Revised: 06/06/2019] [Accepted: 07/01/2019] [Indexed: 11/17/2022] Open
Abstract
AIM To explore how family caregivers experience involvement in palliative care. DESIGN A qualitative design with a narrative approach was used. METHODS Purposive sampling and narrative interviews were conducted. Eleven bereaved family caregivers for patients with cancer receiving palliative care were interviewed in Mid-Norway between November 2016-May 2017. RESULTS We identified four themes related to family caregivers' experiences of involvement in the early, middle, terminal and bereavement phases of palliative care: (a) limited involvement in the early phase; (b) emphasis on patient-centred care in the middle phase; (c) lack of preparation for the dying phase; and (d) lack of systematic follow-up after death. Family caregivers experienced low level of involvement throughout the palliative pathway. CONCLUSION The involvement of family caregivers in palliative care may not be proportional to their responsibilities. The needs of family caregivers should be addressed in nursing education to give nurses competence to support family caregivers in providing home-based care.
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Affiliation(s)
- Anett Skorpen Tarberg
- Helse Møre og Romsdal Hospital TrustÅlesundNorway
- European Palliative Care Research Centre (PRC), Department of Clinical and Molecular Medicine, Faculty of Medicine and Health SciencesNorwegian University of Science and Technology (NTNU)TrondheimNorway
| | - Marit Kvangarsnes
- Helse Møre og Romsdal Hospital TrustÅlesundNorway
- Faculty of Medicine and Health Sciences, Institute of Health Sciences ÅlesundNorwegian University of Science and Technology (NTNU)ÅlesundNorway
| | - Torstein Hole
- Helse Møre og Romsdal Hospital TrustÅlesundNorway
- Department of Circulation and Medical Imaging, Faculty of Medicine and Health SciencesNorwegian University of Science and Technology (NTNU)TrondheimNorway
| | - Morten Thronæs
- European Palliative Care Research Centre (PRC), Department of Clinical and Molecular Medicine, Faculty of Medicine and Health SciencesNorwegian University of Science and Technology (NTNU)TrondheimNorway
- Cancer Clinic, St. Olav HospitalTrondheim University HospitalTrondheimNorway
| | - Torfinn Støve Madssen
- Department of Circulation and Medical Imaging, Faculty of Medicine and Health SciencesNorwegian University of Science and Technology (NTNU)TrondheimNorway
| | - Bodil J. Landstad
- Department of Health SciencesMid Sweden UniversityÖstersundSweden
- Levanger HospitalNord‐Trøndelag Hospital TrustLevangerNorway
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23
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Abstract
PURPOSE OF REVIEW This review aims to discuss situations where patients would prefer to consider dying rather than survive, particularly in the context of choosing whether to be subjected to active medical management aimed at increasing their life span. RECENT FINDINGS Obviously, there are no randomized trials on evaluating whether patients would choose death rather than life. Moreover, the topic of the review is rarely addressed in a conventional scientific way. Instead, we review the suffering that people may go through when receiving futile care in both the short and long-term in acute hospitals and how this may influence people's decisions about their own Goals of Care. SUMMARY The review describes the failure of acute hospitals to recognize people at the end of life until very late and, when they are recognized, the failure to manage the dying process well. The inference is that if patients were genuinely aware of the potential short and long-term suffering involved in futile care, they would consider those states worse, may be worse than death, especially when death is almost certainly inevitable with or without conventional treatment.
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Park SA, Lim JY, Yoon YM. Perceptions of a Dignified Death Among Elderly Veterans Using Homecare in South Korea. HOME HEALTH CARE MANAGEMENT AND PRACTICE 2019. [DOI: 10.1177/1084822318818821] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.2] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/16/2022]
Abstract
This study was conducted to investigate perceptions of a dignified death among elderly veterans using homecare in South Korea. This study was a descriptive survey. The subjects were 161 elderly veterans using the homecare service of a national veterans’ hospital for 1 year or more. Participants’ demographic, illness, and care characteristics and perceptions of a dignified death were analyzed using descriptive statistics, t test, and analysis of variance (ANOVA). Participants’ mean dignified death perception level was 3.18 on a 4-point Likert-type scale. Participants who received medical services free of charge had higher perceptions of a dignified death than those who had to pay. Having at least a college education, having above-average economic status, and being cared for by spouses or professionals were associated with higher perceptions of a dignified death. Participants’ perception of a dignified death differed by socioeconomic factors rather than disease characteristics. Therefore, to improve perceptions of a dignified death among elderly veterans using homecare services, it might be necessary for the state to assume greater responsibility for their medical expenses, to build better community-based end-of-life care systems, and to promote health and welfare policies for dignified death–oriented social infrastructure.
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Affiliation(s)
- Sun A. Park
- University of Suwon, Gyeonggi-do, Republic of Korea
| | | | - Young Mi Yoon
- Veterans Health Service Medical Center, Seoul, Republic of Korea
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Hudson BF, Best S, Stone P, Noble T(B. Impact of informational and relational continuity for people with palliative care needs: a mixed methods rapid review. BMJ Open 2019; 9:e027323. [PMID: 31147362 PMCID: PMC6549611 DOI: 10.1136/bmjopen-2018-027323] [Citation(s) in RCA: 16] [Impact Index Per Article: 2.7] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 11/30/2022] Open
Abstract
OBJECTIVE To identify and synthesise existing literature exploring the impact of relational and informational continuity of care on preferred place of death, hospital admissions and satisfaction for palliative care patients in qualitative, quantitative and mixed methods literature. DESIGN A mixed methods rapid review. METHODS PUBMED, PsychINFO, CINAHL were searched from June 2008 to June 2018 in order to identify original peer reviewed, primary qualitative, quantitative or mixed methods research exploring the impact of continuity of care for people receiving palliative care. Synthesis methods as outlined by the Cochrane Qualitative and Implementation Methods Group were applied to qualitative studies while meta-analyses for quantitative data were planned. OUTCOMES The impact of interventions designed to promote continuity of care for people receiving palliative care on the following outcomes was explored: achieving preferred place of death, satisfaction with care and avoidable hospital admissions. RESULTS 18 eligible papers were identified (11 qualitative, 6 quantitative and 1 mixed methods papers). In all, 1951 patients and 190 family caregivers were recruited across included studies. Meta-analyses were not possible due to heterogeneity in outcome measures and tools used. Two studies described positive impact on facilitating preferred place of death. Four described a reduction in avoidable hospital admissions. No negative impacts of interventions designed to promote continuity were reported. Patient satisfaction was not assessed in quantitative studies. Participants described a significant impact on their experiences as a result of the lack of informational and relational continuity. CONCLUSIONS This rapid review highlights the impact that continuity of care can have on the experiences of patients receiving palliative care. The evidence for the impact of continuity on place of death and hospital admissions is limited. Methods for enhancing, and recording continuity should be considered in the design and development of future healthcare interventions to support people receiving palliative care.
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Affiliation(s)
- Briony F Hudson
- Marie Curie, London, UK
- Marie Curie Palliative Care Research Department, Division of Psychiatry, University College London, London, UK
| | | | - Patrick Stone
- Marie Curie Palliative Care Research Department, Division of Psychiatry, University College London, London, UK
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Engbers RA. Informal Caregivers' Perceptions of Needs From Hospice Providers: An Integrative Review. Am J Hosp Palliat Care 2019; 36:1114-1123. [PMID: 30991813 DOI: 10.1177/1049909119842365] [Citation(s) in RCA: 2] [Impact Index Per Article: 0.3] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/16/2022] Open
Abstract
INTRODUCTION In the United States, informal caregivers (ICs) provide care to over 70% of patients at the end of life. Approximately 500 000 ICs contribute to the end-of-life care for patients in the United Kingdom. Hospice care is expanding worldwide to meet the needs of these ICs. Because ICs play an instrumental role in the provision of hospice services, and their perspective of their needs of formal services requires further clarity, the purpose of this review is to synthesize research that elucidates perceptions of ICs regarding their experiences with hospice providers. METHODS Twelve research studies regarding perceptions of informal hospice caregivers were obtained by searching CINAHL, PsycINFO, and MEDLINE databases. RESULTS Four primary themes emerged that describe what ICs perceive as beneficial contributions of hospice providers in aiding their caregiving: providing easy access to desired care, building up the caregiver, forming a relationship, and utilizing culturally relevant interpersonal skills. CONCLUSION Particular attention must be paid to ensuring that the IC is acknowledged as an expert part of the team. Clearly explaining available services, creating better ways to ease the IC's transition from caregiving to bereavement, and recruiting minority hospice providers are other important efforts that could improve the caregiving experience. The needs of ICs are complex, but by listening to their perspective, we can begin to clarify the best ways to aid them in their difficult job.
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Chase JAD, Russell D, Rice M, Abbott C, Bowles KH, Mehr DR. Caregivers' Perceptions Managing Functional Needs Among Older Adults Receiving Post-Acute Home Health Care. Res Gerontol Nurs 2019; 12:174-183. [PMID: 30901481 DOI: 10.3928/19404921-20190319-01] [Citation(s) in RCA: 14] [Impact Index Per Article: 2.3] [Reference Citation Analysis] [Abstract] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 11/06/2018] [Accepted: 02/15/2019] [Indexed: 11/20/2022]
Abstract
Caregivers play important roles in managing the physical functioning (PF) needs of older adults transitioning home after a hospitalization. Training and support of caregivers in the post-acute home health care (HHC) setting should incorporate caregivers' perspectives. To explore caregivers' experiences managing PF needs in the post-acute HHC setting, semi-structured telephone interviews of 20 caregivers were conducted. Conventional content analysis revealed patient-, caregiving task-, caregiver-, and home environment-related themes consistent with the Theory of Dependent Care. Caregivers highlighted the dynamics and contributors of PF needs for older patients in the post-acute HHC setting and depicted the enormity of caregiving tasks needed to manage older patients' PF needs. Caregivers also described their perceived roles and challenges in managing PF deficits, including a sense of isolation when they were the sole caregiver. Findings from this research can guide nursing efforts to target caregiver training and support during this critical care transition. [Res Gerontol Nurs. 2019; 12(4):174-183.].
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Hughes NM, Noyes J, Eckley L, Pritchard T. What do patients and family-caregivers value from hospice care? A systematic mixed studies review. BMC Palliat Care 2019; 18:18. [PMID: 30736788 PMCID: PMC6368799 DOI: 10.1186/s12904-019-0401-1] [Citation(s) in RCA: 23] [Impact Index Per Article: 3.8] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 10/02/2018] [Accepted: 01/29/2019] [Indexed: 11/10/2022] Open
Abstract
BACKGROUND It is not known which attributes of care are valued the most by those who experience hospice services. Such knowledge is integral to service development as it facilitates opportunities for continuous improvement of hospice care provision. The objectives of this mixed-studies systematic review were to explore patients' and their family carer views and experiences, to determine what they valued about adult hospice care in the UK. METHODS ASSIA, PubMed, CINAHL and PsycINFO were searched from inception, up until March 2017 to identify qualitative, quantitative, and mixed-methods studies. Four additional searching techniques supplemented the main search and grey literature was included. A three-stage mixed-method systematic review was conducted with a sequential exploratory design. Thematic synthesis was used with qualitative data, followed by a narrative summary of the quantitative data. The qualitative and quantitative syntheses were then juxtaposed within a matrix to produce an overarching synthesis. RESULTS Thirty-four studies highlighted that what patients and carers valued was generally context specific and stemmed from an amalgamation of hospice service components, which both individually and collectively contributed to improvements in quality of life. When the syntheses of qualitative and quantitative studies were viewed in isolation, the value placed on services remained relatively consistent, with some discrepancies evident in service availability. These were commonly associated with geographical variations, as well as differences in service models and timeframes. Through an overarching synthesis of the qualitative and quantitative evidence, however, notable variations and a more nuanced account of what people valued and why were more prominent, specifically in relation to a lack of social support for carers, disparate access to essential services, the underrepresentation of patients with a non-cancer diagnosis, and the dissatisfaction with the range of services provided. CONCLUSION Review findings strengthen the existing evidence base and illuminates the underpinning elements of hospice care most valued by patients and their families. With large disparities in the availability of services, however, the underrepresentation of patients with non-malignant diseases and the limited evidence base demonstrating the adequate addressment of the social needs of carers, there continues to be considerable gaps that warrants further research.
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Affiliation(s)
- Nicole Marie Hughes
- School of Healthcare Sciences, Bangor University, Bangor, North Wales LL57 2DG UK
| | - Jane Noyes
- School of Healthcare Sciences, Bangor University, Bangor, North Wales LL57 2DG UK
| | - Lindsay Eckley
- Present address: North of England Zoological Society (Chester Zoo), Caughall Road, Chester, UK
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Bernardes JF, Nolasco FF, Jardim ASL, Cunha GR, Takeshita IM, Barroso RADA. O acompanhante do paciente oncológico em fase terminal: percepção do técnico de enfermagem. AVANCES EN ENFERMERÍA 2019. [DOI: 10.15446/av.enferm.v37n1.71351] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/09/2022] Open
Abstract
Objetivo: compreender a percepção dos técnicos de enfermagem em relação aos acompanhantes dos pacientes oncológicos em fase terminal.Metodologia: trata-se de uma pesquisa descritivo-exploratória de natureza qualitativa, desenvolvida em um hospital referência para o tratamento do câncer em Belo Horizonte, Minas Gerais. A coleta de dados ocorreu entre os meses de setembro e outubro de 2016. Utilizou-se a Análise de Conteúdo fundamentada em Bardin para a avaliação das entrevistas.Resultados: a partir da análise das entrevistas, emergiram duas categorias empíricas: O conviver cotidiano do técnico de enfermagem e o acompanhante do paciente oncológico em fase terminal e Fatores dificultadores da interação da enfermagem com os acompanhantes, focando-se na interação dos profissionais com o acompanhante e os fatores de conflito entre as partes.Conclusão: foi evidenciada a importância do acompanhante pelo técnico de enfermagem nesse processo de terminalidade, na medida em que podem proporcionar segurança e acolhimento ao paciente. No entanto, a ausência de uma comunicação adequada entre os acompanhantes e o profissional foi o fator preponderante na geração de conflitos. A enfermagem requer, por parte da instituição assim como do acompanhante, de espaços nos quais possam expressar suas angústias e anseios, fazendo que esse percurso seja um momento de acolhimento e de criação de vínculos entre os envolvidos.
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Fjose M, Eilertsen G, Kirkevold M, Grov EK. "Non-palliative care" - a qualitative study of older cancer patients' and their family members' experiences with the health care system. BMC Health Serv Res 2018; 18:745. [PMID: 30268149 PMCID: PMC6162914 DOI: 10.1186/s12913-018-3548-1] [Citation(s) in RCA: 20] [Impact Index Per Article: 2.9] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Journal Information] [Subscribe] [Scholar Register] [Received: 06/11/2018] [Accepted: 09/18/2018] [Indexed: 12/26/2022] Open
Abstract
Background Among all cancer patients in the palliative phase, ¾ have reached the age of 65. An aging population will increase the number of people afflicted with cancer, and create challenges for patients, family members and health services. Nevertheless, limited research has focused explicitly on the experiences and needs of older cancer patients in the palliative phase and their families. Therefore, the aim of this study is to explore what older home dwelling cancer patients in the palliative phase and their close family members, as individuals and as a family, experience as important and difficult when facing the health services. Methods We used a qualitative descriptive design. Data was collected through family group interviews with 26 families. Each interview consisted of an older home dwelling cancer patient and one to four family members with different relationships to the patient (e.g. spouse, adult children and/or children-in-law). Data was analysed by qualitative content analysis. Results The main theme is “Non-palliative care” – health care services in the palliative phase not tailored to family needs. Three themes are revealed: 1) exhausting cancer follow-up, 2) a cry for family involvement, and 3) fragmented care. Conclusion The health services seem poorly organised for meeting the demands of palliative care for older home dwelling cancer patients in the palliative phase and their family members. Close family members would like to contribute but health services lack systems for involving them in the follow-up of the patient.
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Affiliation(s)
- Marianne Fjose
- Faculty of Health and Social Sciences, Department of Health and Caring Sciences, Western Norway University of Applied Sciences, Postboks 7030, 5020, Bergen, Norway.
| | - Grethe Eilertsen
- Faculty of Health and Social Sciences, Department of Nursing and Health Sciences, University College of Southeast Norway, Drammen, Norway
| | - Marit Kirkevold
- Faculty of Medicine, Department of Nursing Science, University of Oslo, Oslo, Norway
| | - Ellen Karine Grov
- Faculty of Health Sciences, Institute of Nursing and Health Promotion, Oslo Metropolitan University, Oslo, Norway
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Butler C, Brigden C, Gage H, Williams P, Holdsworth L, Greene K, Wee B, Barclay S, Wilson P. Optimum hospice at home services for end-of-life care: protocol of a mixed-methods study employing realist evaluation. BMJ Open 2018; 8:e021192. [PMID: 29769257 PMCID: PMC5961564 DOI: 10.1136/bmjopen-2017-021192] [Citation(s) in RCA: 6] [Impact Index Per Article: 0.9] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Download PDF] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 11/04/2022] Open
Abstract
INTRODUCTION Hospice at home (HAH) services aim to enable patients to be cared for and die in their place of choice, if that is at home, and to achieve a 'good death'. There is a considerable range of HAH services operating in England. The published evidence focuses on evaluations of individual services which vary considerably, and there is a lack of consistency in terms of the outcome measures reported. The evidence, therefore, does not provide generalisable information, so the question 'What are the features of hospice at home service models that work, for whom, and under what circumstances?' remains unanswered. The study aims to answer this question. METHODS AND ANALYSIS This is a mixed-methods study in three phases informed by realist evaluation methodology. All HAH services in England will be invited to participate in a telephone survey to enable the development of a typology of services. In the second phase, case study sites representing the different service types will collect patient data and recruit carers, service managers and commissioners to gather quantitative and qualitative data about service provision and outcomes. A third phase will synthesise and refine the results through consensus workshops. ETHICS AND DISSEMINATION The first survey phase has university ethics approval and the second phase, Integrated Research Application System (IRAS) and Health Research Authority (HRA) approval (IRAS ID:205986, REC:17/LO/0880); the third phase does not require ethics approval. Dissemination will be facilitated by project coapplicants with established connections to national policy-making forums, in addition to publications, conference presentations and reports targeted to service providers and commissioners.
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Affiliation(s)
- Claire Butler
- Centre for Health Services Studies, University of Kent, Canterbury, UK
| | | | - Heather Gage
- Department of Clinical and Experimental Medicine, University of Surrey, Guildford, UK
| | - Peter Williams
- Department of Mathematics, University of Surrey, Guildford, UK
| | - Laura Holdsworth
- Primary Care and Population Health, Stanford School of Medicine, Stanford, California, USA
| | - Kay Greene
- National Association for Hospice at Home, Fareham, UK
| | | | - Stephen Barclay
- Primary Care Unit, Department of Public Health and Primary Care, University of Cambridge, Cambridge, UK
| | - Patricia Wilson
- Centre for Health Services Studies, University of Kent, Canterbury, UK
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Aparicio M, Centeno C, Carrasco JM, Barbosa A, Arantzamendi M. What are families most grateful for after receiving palliative care? Content analysis of written documents received: a chance to improve the quality of care. BMC Palliat Care 2017; 16:47. [PMID: 28874150 PMCID: PMC5586049 DOI: 10.1186/s12904-017-0229-5] [Citation(s) in RCA: 24] [Impact Index Per Article: 3.0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Download PDF] [Journal Information] [Subscribe] [Scholar Register] [Received: 03/21/2016] [Accepted: 08/15/2017] [Indexed: 11/10/2022] Open
Abstract
BACKGROUND Family members are involved in the care of palliative patients at home and therefore, should be viewed as important sources of information to help clinicians better understand the quality palliative care service patients receive. The objective of the study was to analyse what is valued most by family carers undergoing bereavement of a palliative care home service in order to identify factors of quality of care. METHODS Qualitative exploratory study based on documentary analysis. Content analysis of 77 gratitude documents received over 8 years by a palliative home service in Odivelas, near Lisbon (Portugal) was undertaken, through an inductive approach and using investigator triangulation. Frequency of distinct categories was quantitatively defined. RESULTS Three different content categories emerged from the analysis: a) Recognition of the care received and the value of particular aspects of care within recognised difficult situations included aspects such as kindness, listening, attention to the family, empathy, closeness, affection and the therapeutic relationships established (63/77 documents); b) Family recognition of the achievements of the palliative care team (29/77) indicated as relief from suffering for the patient and family, opportunity of dying at home, help in facing difficult situations, improvement in quality of life and wellbeing, and feeling of serenity during bereavement; c) Messages of support (45/77) related to the need of resources provided. The relational component emerges as an underlying key aspect of family carers' experience with palliative care home service. CONCLUSION Family carers show spontaneous gratitude for the professionalism and humanity found in palliative care. The relational component of care emerges as key to achieve a high quality care experience of palliative care homes service, and could be one indicator of quality of palliative care.
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Affiliation(s)
- María Aparicio
- St John’s Hospice, London, UK
- Universidad de Navarra, ICS, ATLANTES, Campus Universitario, 31080 Pamplona, España
| | - Carlos Centeno
- Universidad de Navarra, ICS, ATLANTES, Campus Universitario, 31080 Pamplona, España
- Clínica Universidad de Navarra, Departamento de Medicina Paliativa, Avenidad Pío XII, 31080 Pamplona, España
- IdiSNA, Instituto de Investigación Sanitaria de Navarra, Grupo: Medicina paliativa, Pamplona, España
| | - José Miguel Carrasco
- Universidad de Navarra, ICS, ATLANTES, Campus Universitario, 31080 Pamplona, España
- IdiSNA, Instituto de Investigación Sanitaria de Navarra, Grupo: Medicina paliativa, Pamplona, España
| | - Antonio Barbosa
- Centre for Bioethics, Faculty of Medicine, University of Lisboa, Lisbon, Portugal
| | - María Arantzamendi
- Universidad de Navarra, ICS, ATLANTES, Campus Universitario, 31080 Pamplona, España
- IdiSNA, Instituto de Investigación Sanitaria de Navarra, Grupo: Medicina paliativa, Pamplona, España
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A Valuable but Demanding Time Family Life During Advanced Cancer in an Elderly Family Member. ANS Adv Nurs Sci 2016; 39:358-373. [PMID: 27618695 DOI: 10.1097/ans.0000000000000145] [Citation(s) in RCA: 7] [Impact Index Per Article: 0.8] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/25/2022]
Abstract
This study explores experiences of elderly patients with cancer and their family members with regard to what is important and difficult in the family relationships during the palliative phase. Family group interviews were conducted with 26 families. The data were analyzed using qualitative content analysis. Three themes emerged: "Ensuring a positive final time together," "Avoiding tension and conflict," and "Concealing thoughts, feelings, and needs." The main theme, "A valuable but demanding time," indicates that although families find this phase of life challenging, they emphasize the importance of ensuring that this time is spent together in a positive way as a family.
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Costello J. Research roundup. Int J Palliat Nurs 2016; 22:464-465. [PMID: 27666308 DOI: 10.12968/ijpn.2016.22.9.464] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/11/2022]
Abstract
Synopses of a selection of recently published research articles of relevance to palliative care.
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Affiliation(s)
- John Costello
- Senior Lecturer, University of Manchester School of Nursing, Midwifery and Social Work
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