scholarly journals ‘You see the empty bed which means it’s either a transplant or a death’: a qualitative study exploring the impact of death in the haemodialysis community

BMJ Open ◽  
2021 ◽  
Vol 11 (6) ◽  
pp. e046537
Author(s):  
Sheera Sutherland ◽  
Kirsty E Durley ◽  
Kirsty Gillies ◽  
Margaret Glogowska ◽  
Daniel S Lasserson ◽  
...  

ObjectiveTo explore the impact of the death of a patient in the haemodialysis unit on fellow patients.MethodsWe interviewed patients on dialysis in a tertiary dialysis centre using semistructured interviews. We purposively sampled patients who had experienced the death of a fellow patient. After interviews were transcribed, they were thematically analysed by independent members of the research team using inductive analysis. Input from the team during analysis ensured the rigour and quality of the findings.Results10 participants completed the interviews (6 females and 4 males with an age range of 42–88 years). The four core themes that emerged from the interviews included: (1) patients’ relationship to haemodialysis, (2) how patients define the haemodialysis community, (3) patients’ views on death and bereavement and (4) patients’ expectations around death in the dialysis community. Patients noticed avoidance behaviour by staff in relation to discussing death in the unit and would prefer a culture of open acknowledgement.ConclusionStaff acknowledgement of death is of central importance to patients on haemodialysis who feel that the staff are part of their community. This should guide the development of appropriate bereavement support services and a framework that promotes the provision of guidance for staff and patients in this unique clinical setting. However, the authors acknowledge the homogenous sample recruited in a single setting may limit the transferability of the study. Further work is needed to understand diverse patient and nurse experiences and perceptions when sharing the knowledge of a patient’s death and how they react to loss.

2018 ◽  
Vol 30 (2) ◽  
pp. 146-153
Author(s):  
Figen Şengün İnan ◽  
Besti Üstün

Purpose: Fear of recurrence (FOR) of cancer is a distressing symptom and can negatively affect breast cancer survivors’ quality of life and psychological well-being. The purpose of this qualitative study was to explore Turkish breast cancer survivors’ experiences related to FOR. Design: The data were collected through semistructured interviews, which were conducted with 12 breast cancer survivors. Results: The data were categorized into four themes: the quality of fear, triggers, effects on life, and coping. FOR survivors’ lives in multiple aspects, and the women found it difficult to manage their fear. Implications: Nurses should be aware of FOR in survivors during follow-up care. In addition, it is essential to consider the impact of FOR on life, and survivors should be referred to appropriate resources and support services.


2021 ◽  
Vol 8 ◽  
pp. 2333794X2110123
Author(s):  
Inese Stars ◽  
Liene Smane ◽  
Zanda Pucuka ◽  
Ieva Roge ◽  
Jana Pavare

Information on family health-related quality of life (FHRQoL) among families of children with the coronavirus disease 2019 (COVID-19) is limited. This qualitative study explores the impact of pediatric COVID-19 on FHRQoL from the parents’ perspective. Semi-structured interviews were conducted with parents (n = 20) whose children had tested positive for the severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2). Inductive thematic analysis revealed the following 10 themes that represented parents’ perception of FHRQoL while taking care of a child with COVID-19: pediatric COVID-19 as a disease with many unknowns; emotional saturation; internal family relationships in the context of “a new experience”; routine household activities and daily regimen while family is in lockdown; plenty of free time; a wide social support network; social stigma associated with COVID-19; different options for work; savings and debts; challenges with family housing and transport availability. Our results show that parents experience multiple effects of pediatric COVID-19 with regard to FHRQoL.


2021 ◽  
Vol 6 (1) ◽  
pp. 151-162
Author(s):  
Steffany M. Chleboun ◽  
Kathryn Brady ◽  
Jennie Zelenak

Much of what we know about stroke is limited to the first 5 years postinjury; however, the effects of having a stroke remain several years, even decades, postinjury, and the impact this has on an individual's quality of life over a long period of time is not completely understood. Purpose The purpose of this study was to understand one woman's experience living with the effects of stroke over multiple decades postinjury and to explore factors that affected her quality of life during this time. Method Using Grounded Theory methodology, data were drawn from 28 years of journals kept by the participant and from semistructured family interviews. Results Four major interacting themes emerged from the data: family support, faith, personality, and journaling. Findings are discussed in the context of resilience theory.


2016 ◽  
Vol 17 (3) ◽  
pp. 303-310 ◽  
Author(s):  
Mark JM Van Duin ◽  
Rafael Conde ◽  
Ben Wijnen ◽  
Silvia MAA Evers ◽  
Javier L Gonzalez-Rodriguez ◽  
...  

Author(s):  
Feliciano Villar ◽  
Rodrigo Serrat ◽  
Annette Bilfeldt ◽  
Joe Larragy

AbstractLiving in a long-term care (LTC) institution provides older people experiencing health and social problems with a comprehensive range of support services that address their quality of life. Despite access to such services, challenges arise in relation to their participation in key activities both within and outside the institution. This chapter examines such challenges, reviewing and describing ways to prevent exclusion along various domains, specifically social relationships, civic participation and socio-cultural life. Firstly, we discuss ways in which bio-medical models of care and the quality control systems, which are dominant in LTC services, standardise care, tending to put decisions exclusively in hands of staff, taking away residents’ autonomy, and ultimately curtailing rights and citizenship status. Secondly, we examine how LTC services might prevent such exclusion and promote older people’s participation in at least four respects: (1) prompting and supporting residents’ ability to take decisions on their own care, (2) favouring the maintenance and creation of social relationships, (3) enabling residents’ participation in the activities and management of the institution, and (4) guaranteeing residents’ rights and full access to citizenship. We discuss the impact and limitations of recent initiatives put into practice in these areas of practice.


2018 ◽  
Vol 9 (2) ◽  
pp. 31
Author(s):  
Sahar A. Abd-El Mohsen ◽  
Nagwa M. Ahmed

Background and objective: Inadequate epileptic patient’s knowledge regarding their disorder may affect the quality of their life. The aim of the study was to determine the impact of epileptic patient’s knowledge on the quality of their life.Methods: Research design: a descriptive study was conducted in the period from February to April 2017 to determine the impact of epileptic patient's knowledge on the quality of their life. Setting; this study was carried out in the neurology department and neurology outpatient clinic of Assiut Neurology University Hospital. Patients; a sample of sixty epileptic male and female patients, with an age range between 18 to 65 years was included. Two tools were used: Tool I: Structured patient interview questionnaire sheet and it included two parts: Part one: Sociodemographic data about of the studied patients, Part two: knowledge assessment regarding their disorder using Epilepsy Patient Knowledge Questionnaire (EPKQ). Tool II: Quality of Life in Epilepsy (QOLIE 31).Results: The highest percentage of the studied sample was male, married, their mean age was 38.97 ± 11.21, and their duration of epilepsy was 16.82 ± 9.7. 58.3% were having satisfactory level of knowledge regarding their condition.Conclusions and recommendation: The present study concluded that: epileptic patients are lacking knowledge regarding their condition (58.3% vs. 41.7%). There was No significant correlation between total QOL and score of knowledge. Recommendation: A self-management program is needed for patients with epilepsy in order to improve their knowledge regarding their disease. 


1992 ◽  
Vol 37 (8) ◽  
pp. 553-563 ◽  
Author(s):  
Céline Mercier ◽  
Raymond Tempier ◽  
Et Claude Renaud

This longitudinal study with a matched comparison group was conducted in Abitibi, an area in North-West Quebec. Its goal was to observe the impact of community support services on the quality of life of long term psychiatric patients living in a remote area. A cohort of 47 subjects, living in a small town with a comprehensive network of community support services, was compared with a similar group living in a neighbouring city with only outpatient services. The satisfaction with life domains scale developed by Andrews and Withey and adapted by Baker and Intagliata was used at four times during the study. According to the results, the subjective perception of the quality of life in the two groups is comparable, even though the objective conditions are less favorable for the group participating in the community support program. The highest ratings were given to the place of residence, the neighborhood and its commodities; the lowest ratings were given to their love life and financial situation. One can observe a stability of the measures of quality of life over time and for the two groups. The perceptions of the sample living in a remote area are much more favorable than the ones of a comparable group living in the Montreal area. These results are discussed in a double perspective: the role of community support services in the daily life of people who are having severe and persistant problems of mental health, and the interest of measures of quality of life.


BMJ Open ◽  
2016 ◽  
Vol 6 (11) ◽  
pp. e011616 ◽  
Author(s):  
Samuel Robert Bennett ◽  
Garth Cruickshank ◽  
Antje Lindenmeyer ◽  
Simon Rhys Morris

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