scholarly journals How to support working family carers? British initiatives as a practical means to reduce loneliness in everyday life of family caregivers in Poland

Family Forum ◽  
2022 ◽  
Vol 11 ◽  
pp. 129-149
Author(s):  
Anna Maria Janowicz ◽  
Martyna Klimek ◽  
Piotr Krakowiak
Keyword(s):  
Home Care ◽  
End Of Life ◽  
Family Caregivers ◽  
End Of Life Care ◽  
Full Time ◽  
Life Care ◽  
Family Carers ◽  
Difficult Situation ◽  
Educational Challenge ◽  
At Home

Among various publications regarding end-of-life care in Poland there is one piece of important research that shows a difficult situation for family caregivers in end-of-life care in Poland, who often lack recognition and support and face a lonely struggle, especially in home care settings (Janowicz, 2019a). The Polish Government published documents in support of family caregivers for the first time in 2019, recognizing respite care and allocating money to some of them. Poland has successfully implemented British standards of hospice and palliative care, making it the best in Central-Eastern Europe; the same could be done in supporting carers in family settings (Krakowiak, 2020a). We have already learnt and benefited from the experience of the British organisation Carers UK, who have been operating successfully for more than 50 years and working towards inclusion of formal and informal care (Klimek, 2020). But how can we move forward in helping those who face loneliness and feelings of helplessness as family carers? We can learn from those who have already developed tools and created strategies supporting family caregivers. Exploring the educational strategies of supporting organizations from the UK, will help to point towards possible solutions to this social and educational challenge in Poland, helping to reduce the loneliness of carers in the home care settings. Most families still feel isolated, while most of our local communities do not support those who care, often for many months and years. Social educators and social workers need to tackle the questions of loneliness and isolation that many family caregivers face. First steps have been made and first publications issued, but more robust strategies and practical solutions are needed. Newest facts and figures from Carers UK documents and Best Practice In Supporting Carers by Carer Positive Employer in Scotland (2020) will help to show existing strategies used for and by employers. Among many existing initiatives this one regarding combining care and work could be very important to recognise the needs of working carers, sharing their job with the duty of constant care at home. Action is urgently needed in Poland, where many people do a full-time job alongside caring at home. Recognition of family carers’ needs by their workplace, support from employers and flexibility in working hours is still a rare exception, and it should be changed. The Covid-19 pandemic has fully exposed the problems of carers of dependent people around the world and also in Poland, especially difficult for those who combine care with work.

scholarly journals Impact on place of death in cancer patients: a causal exploration in southern Switzerland

2020 ◽  
Author(s):  
Heidi Kern ◽  
Giorgio Corani ◽  
David Huber ◽  
Nicola Vermes ◽  
Marco Zaffalon ◽  
...  
Keyword(s):  
Home Care ◽  
End Of Life ◽  
Cancer Patients ◽  
Family Caregivers ◽  
Patient Preference ◽  
End Of Life Care ◽  
Place Of Death ◽  
Life Care ◽  
Palliative Home Care ◽  
At Home

Abstract Background Most terminally ill cancer patients prefer to die at home, but a majority die in institutional settings. Research questions about this discrepancy have not been fully answered. This study applies artificial intelligence and machine learning techniques to explore the complex network of factors and the cause-effect relationships affecting the place of death, with the ultimate aim of developing policies favouring home-based end-of-life care. Methods A data mining algorithm (a classifier) and a causal probabilistic model (a credal network) for data analysis were developed with information derived from expert knowledge that was merged with data from 116 deceased cancer patients in southern Switzerland. This data set was obtained via a retrospective clinical chart review. Results Dependencies of disease and treatment-related decisions demonstrate an influence on the place of death of 13%. Anticancer treatment in advanced disease prevents or delays communication about the end of life between oncologists, patients and families. Unknown preferences for the place of death represent a great barrier to a home death. A further barrier is the limited availability of family caregivers for terminal home care. The family’s preference for the last place of care has a high impact on the place of death of 51%, while the influence of the patient’s preference is low, at 14%. Approximately one-third of family systems can be empowered by health care professionals to provide home care through open end-of-life communication and good symptom management. Such intervention has an influence on the place of death of 17%. If families express a convincing preference for home care, the involvement of a specialist palliative home care service can increase the probability of home deaths by 24%. Conclusion Concerning death at home, open communication about dying is essential. Furthermore, for the patient preference for home care to be respected, the family’s decision for the last place of care seems key. Early initiation of family-centred palliative care and provision of specialist palliative home care for patients who wish to die at home are suggested. Keywords Cancer; End-of-life care; Palliative Home care; Place of death; Communication; Family caregivers; Patient preference; Bayesian networks; Credal networks; Bayesian classifiers

Family Caregivers’ Confidence Caring for Relatives in Hospice Care at Home: An Exploratory Qualitative Study

2018 ◽  
Vol 35 (12) ◽  
pp. 1540-1546 ◽  
Author(s):  
Jacek T. Soroka ◽  
Katherine Froggatt ◽  
Sara Morris
Keyword(s):  
End Of Life ◽  
Family Caregivers ◽  
End Of Life Care ◽  
Terminal Illness ◽  
Care Staff ◽  
Life Care ◽  
Cross Sectional ◽  
Home Setting ◽  
Care At Home ◽  
At Home

Objectives: Although the experiences of family caregivers have received attention, little research has specifically explored caregivers’ confidence. Evidence shows that caregivers of hospice patients do not feel confident or prepared to care for relatives or friends who die at home. Aim: We aimed to elicit the views, feelings, and experiences of primary caregivers who provide unpaid care to dying family members in the home setting to better understand what contributes to their confidence during end-of-life care. Design: The exploratory, cross-sectional design involved semistructured, in-depth interviews. A narrative analysis that focused on form and content was chosen to analyze the data. Participants: Sixteen bereaved caregivers (14 individuals and 1 brother/sister dyad) from the midwestern United States who received support from 1 hospice participated in the study. Results: Four storylines running longitudinally through the interviews were identified as shaping, giving meaning to, and contextualizing caregivers’ confidence: values/relationships, stories of terminal illness, needs, and support. Caregivers’ confidence is shaped by the terminal illness of the person for whom they care and caregivers’ values and relationships. It is also influenced by their needs and the sources and strength of support they receive. Conclusions: This research developed understanding about family provision of end-of-life care at home. Better comprehension of caregivers’ experiences can help professional hospice and palliative care staff to understand what aids caregivers to be more confident.

scholarly journals Home care and end-of-life hospital admissions: a retrospective interview study in English primary and secondary care

2019 ◽  
Vol 69 (685) ◽  
pp. e561-e569 ◽  
Author(s):  
Sarah Hoare ◽  
Michael P Kelly ◽  
Stephen Barclay
Keyword(s):  
Home Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Hospital Admissions ◽  
Care Delivery ◽  
Care Provision ◽  
Life Care ◽  
Healthcare Staff ◽  
Next Of Kin ◽  
At Home

BackgroundEnabling death at home remains an important priority in end-of-life care policy. However, hospital continues to be a more prevalent place of death than home in the UK, with admissions at the end-of-life often negatively labelled. Admissions are frequently attributed to an unsuitable home environment, associated with inadequate family care provision and insufficient professional care delivery.AimTo understand problems in professional and lay care provision that discourage death at home and lead to hospital admissions at the end of life.Design and settingA qualitative study of admission to a large English hospital of patients close to the end of their life.MethodRetrospective in-depth semi-structured interviews with healthcare professionals (n = 30) and next-of-kin (n = 3) involved in an admission. Interviews addressed why older patients (>65 years) close to the end of life are admitted to hospital. Interviews were transcribed and analysed thematically.ResultsHome-based end-of-life care appeared precarious. Hospital admission was considered by healthcare staff when there was insufficient nursing provision, or where family support, which was often extensive but under supported, was challenged. In these circumstances, home was not recognised to be a suitable place of care or death, justifying seeking care provision elsewhere.ConclusionChallenges in home care provision led to hospital admissions. Home end-of-life care depended on substantial input from family and professional carers, both of which were under-resourced. Where either care was insufficient to meet the needs of patients, home was no longer deemed to be desirable by healthcare staff and hospital care was sought.

scholarly journals ‘It’s like trying to ice a cake that’s not been baked’: a qualitative exploration of the contextual factors associated with implementing an evidence-based information intervention for family carers at the end of life

2020 ◽  
Vol 21 ◽  
Author(s):  
Amy Mathieson ◽  
Karen Luker ◽  
Gunn Grande
Keyword(s):  
Home Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Evidence Based ◽  
Management Support ◽  
Life Care ◽  
Care Providers ◽  
Family Carers ◽  
Structured Interviews ◽  
Practice Development

Abstract Aim: To explore the introduction of an evidence-based information intervention – the ‘Caring for Someone with Cancer’ booklet – within home care and end-of-life care, to inform future implementation and practice development within this setting. Background: Family carers’ contribution is crucial to enable care and death of people at home. The ‘Caring for Someone with Cancer’ booklet received positive responses from family carers and District Nurses and is an evidence-based intervention designed to support carers to deliver basic nursing tasks. Further feasibility work was required to establish how it should be implemented. Little is known about how to successfully translate interventions into practice, particularly within home care settings and end-of-life care. Methods: Implementation of the ‘Caring for Someone with Cancer’ booklet, utilising a qualitative case study approach, in four home care sites. Semi-structured interviews, informed by Normalization Process Theory (NPT), were undertaken at implementation sites in May 2016–June 2017. Participants were generalist and specialist nurses, managers, and Healthcare Assistants (HCAs). A framework approach to analysis was adopted. Findings: Forty-five members of staff participated. Failed implementation was associated with organisational-level characteristics and conditions, including workforce composition and predictability of processes. Unstable work environments meant home care providers focused on short-term rather than long-term goals, precluding practice development. Staff’s perceptions of the time available to engage with and implement the intervention inhibited adoption, as many participants were “just getting through the day”. Implementation was successful in sites with explicit management support, including proactive implementation attempts by managers, which legitimatised the change process, and if all staff groups were engaged. To encourage uptake of evidence-based interventions in home care settings, practitioners should be given opportunities to critically reflect upon taken-for-granted practices. Future implementation should focus on work pertaining to the NPT construct ‘Collective Action’, including how staff interact and build confidence in new practices.

scholarly journals Family and health-care professionals managing medicines for patients with serious and terminal illness at home: a qualitative study

2021 ◽  
Vol 9 (14) ◽  
pp. 1-162
Author(s):  
Kristian Pollock ◽  
Eleanor Wilson ◽  
Glenys Caswell ◽  
Asam Latif ◽  
Alan Caswell ◽  
...  
Keyword(s):  
Health Care ◽  
End Of Life ◽  
Family Caregivers ◽  
Health Care Professionals ◽  
End Of Life Care ◽  
Terminal Illness ◽  
Life Care ◽  
Medicines Management ◽  
At Home

Background More effective ways of managing symptoms of chronic and terminal illness enable patients to be cared for, and to die, at home. This requires patients and family caregivers to manage complex medicines regimens, including powerful painkillers that can have serious side effects. Little is known about how patients and family caregivers manage the physical and emotional work of managing medicines in the home or the support that they receive from health-care professionals and services. Objective To investigate how patients with serious and terminal illness, their family caregivers and the health-care professionals manage complex medication regimens and routines of care in the domestic setting. Design A qualitative study involving (1) semistructured interviews and group discussions with 40 health-care professionals and 21 bereaved family caregivers, (2) 20 patient case studies with up to 4 months’ follow-up and (3) two end-of-project stakeholder workshops. Setting This took place in Nottinghamshire and Leicestershire, UK. Results As patients’ health deteriorated, family caregivers assumed the role of a care co-ordinator, undertaking the everyday work of organising and collecting prescriptions and storing and administering medicines around other care tasks and daily routines. Participants described the difficulties of navigating a complex and fragmented system and the need to remain vigilant about medicines prescribed, especially when changes were made by different professionals. Access to support, resilience and coping capacity are mediated through the resources available to patients, through the relationships that they have with people in their personal and professional networks, and, beyond that, through the wider connections – or disconnections – that these links have with others. Health-care professionals often lacked understanding of the practical and emotional challenges involved. All participants experienced difficulties in communication and organisation within a health-care system that they felt was complicated and poorly co-ordinated. Having a key health professional to support and guide patients and family caregivers through the system was important to a good experience of care. Limitations The study achieved diversity in the recruitment of patients, with different characteristics relating to the type of illness and socioeconomic circumstances. However, recruitment of participants from ethnically diverse and disadvantaged or hard-to-reach populations was particularly challenging, and we were unable to include as many participants from these groups as had been originally planned. Conclusions The study identified two key and inter-related areas in which patient and family caregiver experience of managing medicines at home in end-of-life care could be improved: (1) reducing work and responsibility for medicines management and (2) improving co-ordination and communication in health care. It is important to be mindful of the need for transparency and open discussion about the extent to which patients and family caregivers can and should be co-opted as proto-professionals in the technically and emotionally demanding tasks of managing medicines at the end of life. Future work Priorities for future research include investigating how allocated key professionals could integrate and co-ordinate care and optimise medicines management; the role of domiciliary home care workers in supporting medicines management in end-of-life care; patient and family perspectives and understanding of anticipatory prescribing and their preferences for involvement in decision-making; the experience of medicines management in terminal illness among minority, disadvantaged and hard-to-reach patient groups; and barriers to and facilitators of increased involvement of community pharmacists in palliative and end-of-life care. Funding This project was funded by the National Institute for Health Research (NIHR) Health Services and Delivery Research programme and will be published in full in Health Services and Delivery Research; Vol. 9, No. 14. See the NIHR Journals Library website for further project information.

Nursing interventions to support family caregivers in end-of-life care at home: A systematic narrative review

2019 ◽  
Vol 97 ◽  
pp. 28-39 ◽  
Author(s):  
Yvonne N. Becqué ◽  
Judith A.C. Rietjens ◽  
Anne Geert van Driel ◽  
Agnes van der Heide ◽  
Erica Witkamp
Keyword(s):  
End Of Life ◽  
Family Caregivers ◽  
End Of Life Care ◽  
Narrative Review ◽  
Nursing Interventions ◽  
Life Care ◽  
Care At Home ◽  
Support Family ◽  
At Home

Preplanned participation of paramedics in end-of-life care at home: A retrospective cohort study

2020 ◽  
pp. 026921632098171
Author(s):  
Leena K Surakka ◽  
Minna M Peake ◽  
Minna M Kiljunen ◽  
Pekka Mäntyselkä ◽  
Juho T Lehto
Keyword(s):  
Palliative Care ◽  
Home Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Home Care Services ◽  
Life Care ◽  
Care Services ◽  
Care At Home ◽  
Care Ward ◽  
At Home

Background: Paramedics commonly face acute crises of patients in palliative care, but their involvement in end-of-life care is not planned systematically. Aim: To evaluate a protocol for end-of-life care at home including pre-planned integration of paramedics and end-of-life care wards. Design: Paramedic visits to patients in end-of-life care protocol were retrospectively studied. Setting/Participants: All of the patients who had registered for the protocol between 1 March 2015 and 28 February 2017 in North Karelia, Finland, were included in this study. Results: A total of 256 patients were registered for the protocol and 306 visits by paramedic were needed. A need for symptom control (38%) and transportation (29%) were the most common reasons for a visit. Paramedics visited 43% and 70% of the patients in areas with and without 24/7 palliative home care services, respectively ( p < 0.001); while 58% of all the visits were done outside of office hours. Problems were resolved at home in 31% of the visits. The patient was transferred to a pre-planned end-of-life care ward and to an emergency department in 48% and 16% of the cases, respectively. More patients died in end-of-life care wards in areas without (54%) than with (33%) 24/7 home care services ( p = 0.001). Conclusions: Integration of paramedics into end-of-life care at home is reasonable especially in rural areas without 24/7 palliative care services and outside of office hours. The majority of patients can be managed at home or with the help of an end-of-life care ward without an emergency visit.

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