scholarly journals How nurses support family caregivers in the complex context of end-of-life home care: a qualitative study

2021 ◽  
Vol 20 (1) ◽  
Author(s):  
Yvonne N. Becqué ◽  
Judith A. C. Rietjens ◽  
Agnes van der Heide ◽  
Erica Witkamp
Keyword(s):  
Home Care ◽  
End Of Life ◽  
Family Caregivers ◽  
Assessment Tools ◽  
Structured Interviews ◽  
Care Family ◽  
The Individual ◽  
Education Support ◽  
Support Family ◽  
At Home

Abstract Background Family caregivers are crucial in providing end-of-life care at home. Without their care, it would be difficult for many patients to die at home. In addition to providing care, family caregivers also need support for themselves. Nurses could play an important role in supporting family caregivers, but little is known about if and how they do so. The aim of this study is to explore how nurses currently approach and support family caregivers in end-of-life home care and which factors influence their support of family caregivers. Methods Data were collected using semi-structured interviews with 14 nurses from nine home care organisations in the Netherlands, in 2018. Interviews were audio-taped, transcribed verbatim and analysed using a thematic analysis approach. Results We identified two underlying nursing perspectives on supporting family caregivers: an instrumental perspective (seeing family caregivers mostly as collaborative partners in care) and a relational perspective (seeing family caregivers as both providing and needing support). All the interviewed nurses stated that they pay attention to family caregivers’ needs. The activities mentioned most often were: identification of support needs, practical education, support in decision-making about the patient’s treatment, emotional support, and organising respite care, such as night care, to relieve the family caregiver. The provision of support is usually based on intuition and experience, rather than on a systematic approach. Besides, nurses reported different factors at the individual, organisational and societal levels that influenced their support of family caregivers, such as their knowledge and experience, the way in which care is organised, and laws and regulations. Conclusions Nurses tend to address family caregivers’ needs, but such care was affected by various factors at different levels. There is a risk that nursing support does not meet family caregivers’ needs. A more reflective approach is needed and evidence-based needs assessment tools may help nurses to systematically assess family caregivers’ needs and to provide appropriate support.

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.

The Life Experiences Among Primary Family Caregivers of Home-Based Palliative Care

2020 ◽  
Vol 37 (10) ◽  
pp. 816-822 ◽  
Author(s):  
Meng-Ping Wu ◽  
Sheng-Jean Huang ◽  
Lee-Ing Tsao
Keyword(s):  
Palliative Care ◽  
Home Care ◽  
End Of Life ◽  
Family Caregivers ◽  
Family Members ◽  
Assessment Tools ◽  
Theory Approach ◽  
Home Based ◽  
Number Of Patients ◽  
Primary Family

Background: An increasing number of patients with terminal illnesses prefer to die in their own homes due to aging, high medical payments, a limited number of hospitalization days, and the ability to receive care from family members. However, few studies have been conducted on the subjective perception and value of caregivers for home-based palliative care (HBPC). Objective: To identify common themes and topics of primary family caregivers’ lived experiences with HBPC when taking care of terminally ill family members. Methods: We conducted audio-recorded transcripts of one-on-one in-depth interviews of primary family caregivers of HBPC. Through a purposive sampling method, the participants were all interviewed; these interviews were transcribed verbatim and analyzed using a grounded theory approach. Results: A total of 22 primary family caregivers participated in the study. “Wholeheartedly accompanying one’s family to the end of life at home” was the core category. Six main themes describing caregivers’ experiences emerged from the interviews: (1) learning the basic skills of end-of-life home care, (2) arranging the sharing and rotation of care, (3) preparing for upcoming deaths and funerals, (4) negotiating the cultural and ethical issues of end-of-life home care, (5) ensuring a comfortable life with basic life support, and (6) maintaining care characterized by concern, perseverance, and patience. Conclusions: Primary family caregivers of HBPC need support and must learn home care skills by means of the holistic approach. It is crucial to establish assessment tools for caregivers’ preparedness for HBPC, including biopsychosocial and cultural considerations.

A new measure of home care patients' dignity at the end of life: The Palliative Patients' Dignity Scale (PPDS)

2015 ◽  
Vol 14 (2) ◽  
pp. 99-108 ◽  
Author(s):  
David Rudilla ◽  
Amparo Oliver ◽  
Laura Galiana ◽  
Pilar Barreto
Keyword(s):  
Palliative Care ◽  
Home Care ◽  
End Of Life ◽  
Family Caregivers ◽  
Survey Design ◽  
Second Step ◽  
Care Family ◽  
Anxiety Depression ◽  
Palliative Patients

ABSTRACTObjective:This study aimed to develop a new and brief instrument to be employed in dignity measurement, one based on the perceptions of patients, relatives, and professionals about dignity.Method:Surveys of patients receiving palliative care, family caregivers, and palliative care professionals were first carried out (sample 1). In the second step, palliative care patients were surveyed with a pilot questionnaire (sample 2). Finally, a survey design was used to assess patients admitted into a home care unit (sample 3). Sample 1 included 78 subjects, including patients, family caregivers, and professionals. Some 20 additional palliative patients participated in sample 2. Finally, 70 more patients admitted to a home care unit participated were surveyed (sample 3). Together with the Palliative Patients' Dignity Scale (PPDS), our survey included other measures of dignity, anxiety, depression, resilient coping, quality of life, spirituality, and social support.Results:After analyzing data from steps 1 and 2, an eight-item questionnaire was presented for validation. The new scale showed appropriate factorial validity (χ2(19) = 21.43, p = 0.31, CFI = 0.99, GFI = 0.92, SRMR = 0.07, and RMSEA = 0.04), reliability (internal consistency estimations of 0.75 and higher), criterial validity (significant correlations with the hypothesized related variables), and a cutoff criteria of 50 on the overall scale.Significance of Results:The new PPDS has appropriate psychometric properties that, together with its briefness, encourages its applicability for dignity assessment at the end of life.

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

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

scholarly journals Combining paid work and family care for a patient at the end of life at home: insights from a qualitative study among caregivers in the Netherlands

2021 ◽  
Vol 20 (1) ◽  
Author(s):  
Femmy M. Bijnsdorp ◽  
Bregje D. Onwuteaka-Philipsen ◽  
Cécile R.L. Boot ◽  
Allard J. van der Beek ◽  
Hanna T. Klop ◽  
...  
Keyword(s):  
End Of Life ◽  
Family Caregivers ◽  
Healthcare Professionals ◽  
Family Care ◽  
Work And Family ◽  
Similar Process ◽  
Paid Work ◽  
Health And Wellbeing ◽  
Care Situation ◽  
At Home

Abstract Background Population ageing, an emphasis on home-based care of palliative patients and policies aimed at prolonging participation in the labour market are placing a growing demand on working family caregivers. This study aimed to provide insight into experiences with combining paid work and family care for patients at the end of life, factors facilitating and hindering this combination, and support needs. Method Semi-structured interviews were held between July 2018 and July 2019 with 18 working family caregivers of patients with a life-threatening illness who were living at home. Transcripts were analysed following the principles of thematic analysis. Results Some family caregivers could combine paid work and family care successfully, while this combination was burdensome for others. Family caregivers generally experienced a similar process in which four domains — caregiver characteristics, the care situation, the work situation and the context — influenced their experiences, feelings and needs regarding either the combination of paid work and care or the care situation in itself. In turn, experiences, feelings and needs sometimes affected health and wellbeing, or prompted caregivers to take actions or strategies to improve the situation. Changes in health and wellbeing could affect the situation in the four domains. Good health, flexibility and support at work, support from healthcare professionals and sharing care tasks were important in helping balance work and care responsibilities. Some caregivers felt ‘sandwiched’ between work and care and reported physical or mental health complaints. Conclusions Experiences with combining paid work and family care at the end of life are diverse and depend on several factors. If too many factors are out of balance, family caregivers experience stress and this impacts their health and wellbeing. Family caregivers could be better supported in this by healthcare professionals, employers and local authorities.

scholarly journals At-home care : interactions between nurses and the elderly/family

2012 ◽  
Vol 25 (spe1) ◽  
pp. 74-80
Author(s):  
Esperança Alves Gago ◽  
Manuel José Lopes
Keyword(s):  
Home Care ◽  
Nursing Practice ◽  
The Elderly ◽  
Diagnostic Assessment ◽  
Care Process ◽  
Structured Interviews ◽  
The Family ◽  
Home Context ◽  
The Relationship ◽  
At Home

OBJECTIVE: To understand the interaction process between the elderly and the family and the nurses during home care. METHODS: Grounded theory qualitative study in a community where 40% of the population is aged 65 or above. The collection of data was made via the non-participating observation of nursing practice during 41 home visits and semi-structured interviews to nurses, the elderly and the family. RESULTS: the following categories emerged - structural organization of at-home care, diagnostic assessment in context and therapeutic intervention in context. CONCLUSION: the central category was "Building the relationship in an at-home context", due to the fact that the relationship between the nurse, the elderly and the family is central across the entire care process. The relation is, simultaneously, the context for all the care and a therapeutic instrument.

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