scholarly journals The Room as Metaphor: Next-of-Kin’s Experiences in End-of-Life Care

2015 ◽  
Vol 2015 ◽  
pp. 1-7
Author(s):  
Carina Werkander Harstäde ◽  
Åsa Roxberg
Keyword(s):  
End Of Life ◽  
Empirical Data ◽  
End Of Life Care ◽  
Theoretical Foundation ◽  
Life Care ◽  
Next Of Kin ◽  
Cancer Disease ◽  
Metaphorical Language ◽  
Inductive Approach

The “room” in end-of-life is a phenomenon that needs deeper understanding as it is a dimension that shows how health and suffering are shaped. Research on the concept of room was chosen as theoretical foundation in this study in order to reach a profound understanding of the next-of-kin’s “room” in end-of-life care. Lassenius’s hermeneutic interpretation in metaphorical language was used as an deductive-inductive approach to the empirical data. The data material comprised 33 interviews with next-of-kin about their experiences of end-of-life care when being close to a relative dying from a cancer disease. The analysis of the data formed four cases: the Standby, the Asylum, the Wall, and the Place. These cases lend their voices to the experiences of the next-of-kin in the study. The findings of this study explain and may well assist nurses to understand the experiences of being next-of-kin in end-of-life care as forming a room of rest from the suffering, a room of controlling the suffering, a room of hiding from the suffering, and a room of belonging.

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.

Feelings of Guilt—Experiences of Next of Kin in End-of-Life Care

2013 ◽  
Vol 15 (1) ◽  
pp. 33-40 ◽  
Author(s):  
Carina Werkander Harstäde ◽  
Birgitta Andershed ◽  
Åsa Roxberg ◽  
David Brunt
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Life Care ◽  
Next Of Kin

Between the patient and the next of kin in end-of-life care: A critical study based on feminist theory

2017 ◽  
Vol 26 (1) ◽  
pp. 201-211 ◽  
Author(s):  
Ellen Ramvi ◽  
Venke Irene Ueland
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Moral Distress ◽  
Moral Identity ◽  
Critical Study ◽  
Life Care ◽  
Ethical Challenges ◽  
Next Of Kin ◽  
Science Data ◽  
Kin Relationship

Background: For the experience of end-of-life care to be ‘good’ many ethical challenges in various relationships have to be resolved. In this article, we focus on challenges in the nurse–next of kin relationship. Little is known about difficulties in this relationship, when the next of kin are seen as separate from the patient. Research problem: From the perspective of nurses: What are the ethical challenges in relation to next of kin in end-of-life care? Research design: A critical qualitative approach was used, based on four focus group interviews. Participants: A total of 22 registered nurses enrolled on an Oncology nursing specialisation programme with experience from end-of-life care from various practice areas participated. Ethical considerations: The study was approved by the Norwegian Social Science Data Service, Bergen, Norway, project number 41109, and signed informed consent obtained from the participants before the focus groups began. Findings and discussion: Two descriptive themes emerged from the inductive analysis: ‘A feeling of mistrust, control and rejection’ and ‘Being between hope and denial of next of kin and the desire of the patient to die when the time is up’. Deductive reinterpretation of data (in the light of moral distress from a Feminist ethics perspective) has made visible the constraints that certain relations with next of kin in end-of-life care lay upon the nurses’ moral identity, the relationship and their responsibility. We discuss how these constraints have political and societal dimensions, as well as personal and relational ones. Conclusion: There is complex moral distress related to the nurse–next of kin relationship which calls for ethical reflections regarding these relationships within end-of-life care.

Next of Kin Perceptions of End of Life Care: An Investigation of Open-Ended Survey Responses to the VA’s Bereaved Family Survey (GP738)

2020 ◽  
Vol 60 (1) ◽  
pp. 268
Author(s):  
Caroline Gray ◽  
Maria Yefimova ◽  
Matthew McCaa ◽  
Joy Goebel ◽  
Scott Shreve ◽  
...  
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Life Care ◽  
Next Of Kin ◽  
Survey Responses ◽  
Bereaved Family

Next of Kin Perspectives on the Experience of End-of-Life Care in a Community Setting

2007 ◽  
Vol 10 (5) ◽  
pp. 1101-1115 ◽  
Author(s):  
Kaye Norris ◽  
Melanie P. Merriman ◽  
J. Randall Curtis ◽  
Charles Asp ◽  
Lilly Tuholske ◽  
...  
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Community Setting ◽  
Life Care ◽  
Next Of Kin

scholarly journals Assessment of the quality of end-of-life care: translation and validation of the German version of the “Care of the Dying Evaluation” (CODE-GER) - a questionnaire for bereaved relatives

2020 ◽  
Vol 18 (1) ◽  
Author(s):  
Annika Vogt ◽  
Stephanie Stiel ◽  
Maria Heckel ◽  
Swantje Goebel ◽  
Sandra Stephanie Mai ◽  
...  
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Convergent Validity ◽  
International Studies ◽  
Life Care ◽  
Next Of Kin ◽  
Evaluation Code ◽  
Perceived Strain ◽  
Care Of The Dying

Abstract Background International studies indicate deficits in end-of-life care that can lead to distress for patients and their next-of-kin. The aim of the study was to translate and validate the “Care of the Dying Evaluation” (CODE) into German (CODE-GER). Methods Translation according to EORTC (European Organisation for Research and Treatment of Cancer) guidelines was followed by data collection to evaluate psychometric properties of CODE-GER. Participants were next-of-kin of patients who had died an expected death in two hospitals. They were invited to participate at least eight, but not later than 16 weeks after the patient’s death. To calculate construct validity, the Palliative care Outcome Scale (POS) was assessed. Difficulty and perceived strain of answering the questionnaire were assessed by a numeric scale (0–10). Results Out of 1137 next-of-kin eligible, 317 completed the questionnaire (response rate: 27.9%). Data from 237 main sample participants, 38 interraters and 55 next-of-kin who participated for repeated measurement were analysed. Overall internal consistency, α = 0.86, interrater reliability, ICC (1) = 0.79, and retest-reliability, ICC (1, 2) = 0.85, were good. Convergent validity between POS and CODE-GER, r = −.46, was satisfactory. A principal component analysis with varimax rotation showed a 7-factor solution. Difficulty, M = 2.2; SD ± 2.4, and perceived strain, M = 4.1; SD ± 3.0, of completing the questionnaire were rather low. Conclusion The results from the present study confirm CODE-GER as a reliable and valid instrument to assess the quality of care of the dying person. More over our study adds value to the original questionnaire by proposing a deepened analysis of obtained data. The development of seven subscales increases its potential for further surveys and research. Trial registration This study was registered retrospectively on the 25th of January 2018 at the German Clinical Trials Register (DRKS00013916).

A Tale of Two Surveys: Life-Affirming Strategy of Mortuary Improves the Quality of Bereavement Care After Hospital Death

2021 ◽  
pp. 003022282199218
Author(s):  
Tiffany W. S. Lau ◽  
Gavin S. W. Chan ◽  
H. Y. Yip ◽  
Jackie C. K. Poon ◽  
Gary K. F. Tsang ◽  
...  
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Psychosocial Support ◽  
Positive Impact ◽  
University Hospital ◽  
Hospital Death ◽  
Life Care ◽  
Next Of Kin ◽  
Similar Survey ◽  
Bereavement Care

Background The mortuary plays an important, under-recognized role in end-of-life care. A ‘ Life-affirming strategy’ was introduced in the mortuary of a university hospital to enhance respect for the deceased and next-of-kin (NOK). Design: NOK who collected bodies in the mortuary of a university hospital participated in a survey. The satisfaction scores, needs and expectations were compared with a similar survey from 2015. Results: The overall experience for NOK improved significantly compared with 2015. The greatest improvement was achieved in ‘mortuary environment’, ‘attitude of mortuary staff’ and ‘body viewing arrangement in the mortuary’. The perceived need for additional psychosocial support was significantly reduced. Conclusions: Results demonstrate success of the life-affirming strategy in enhancing end-of-life care for bereaved families. The person-centered approach modernizes and professionalizes mortuary services, with a positive impact on the deceased, NOK, mortuary staff, hospital administration and wider community.

Racial Differences in Next-of-Kin Participation in an Ongoing Survey of Satisfaction with End-of-Life Care: A Study of a Study

2006 ◽  
Vol 9 (5) ◽  
pp. 1076-1085 ◽  
Author(s):  
Kimberly S. Johnson ◽  
Katja Elbert-Avila ◽  
Maragatha Kuchibhatla ◽  
James A. Tulsky
Keyword(s):  
End Of Life ◽  
Racial Differences ◽  
End Of Life Care ◽  
Life Care ◽  
Next Of Kin

Facilitating family needs and support at the end of life in hospital: A descriptive study

2021 ◽  
pp. 026921632110664
Author(s):  
Melissa J Bloomer ◽  
Peter Poon ◽  
Fiona Runacres ◽  
Alison M Hutchinson
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Family Members ◽  
General Medicine ◽  
Descriptive Study ◽  
Life Care ◽  
Family Needs ◽  
Next Of Kin ◽  
Dying Patients

Background: Caring for family members of dying patients is a vital component of end-of-life care, yet family members’ needs at the end of life may be unmet. Aim: To explore hospital clinician assessment and facilitation of family needs and practices to support families at the end of life. Design: Descriptive study utilising a retrospective medical record audit. Setting and Sample: Undertaken in a large public hospital, the sample included 200 deceased patients from four specialities; general medicine ( n = 50), intensive care ( n = 50), inpatient palliative care ( n = 50) and aged rehabilitation ( n = 50). Data were analysed according to age; under 65-years and 65-years or over. Results: Deceased patients’ mean age was 75-years, 60% were Christian and Next-of-Kin were documented in 96% of cases. 79% spoke English, yet interpreters were used in only 6% of cases. Formal family meetings were held in 64% of cases. An assessment of family needs was undertaken in 52% of cases, and more likely for those under 65-years ( p = 0.027). Cultural/religious practices were supported/facilitated in only 6% of all cases. Specialist palliative care involvement was more likely for those aged 65-years or over ( p = 0.040) and social work involvement more likely for those under 65-years ( p = 0.002). Pastoral care and bereavement support was low across the whole sample. Conclusions: Prioritising family needs should be core to end-of-life care. Anticipation of death should trigger routine referral to support personnel/services to ensure practice is guided by family needs. More research is needed to evaluate how family needs assessment can inform end-of-life care, supported by policy.

Dysphagia in Hospice Care: The Roles of Social Work and Speech-Language Pathologists

2014 ◽  
Vol 23 (4) ◽  
pp. 173-186 ◽  
Author(s):  
Deborah Hinson ◽  
Aaron J. Goldsmith ◽  
Joseph Murray
Keyword(s):  
Social Work ◽  
End Of Life ◽  
Case Studies ◽  
End Of Life Care ◽  
Hospice Care ◽  
Patient Communication ◽  
Life Care ◽  
Speech Language Pathologists ◽  
Four Levels

This article addresses the unique roles of social work and speech-language pathologists (SLPs) in end-of-life and hospice care settings. The four levels of hospice care are explained. Suggested social work and SLP interventions for end-of-life nutrition and approaches to patient communication are offered. Case studies are used to illustrate the specialized roles that social work and SLP have in end-of-life care settings.

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