scholarly journals Unspoiled Identities of People Living Alone With Dementia: Resisting Stigma by Helping Others

2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 359-360
Author(s):  
Laura Girling ◽  
Kate de Medeiros
Keyword(s):  
Qualitative Study ◽  
Family Members ◽  
Living Alone ◽  
Care Recipient ◽  
Active Engagement ◽  
Dependent Care ◽  
Loss Of Self ◽  
Helping Others ◽  
Depth Interviews ◽  
Valuable Role

Abstract Goffman (1963) described stigma as the shift from being viewed as a whole and usual person to one with a spoiled identity. People living with dementia (PLWD) often report feeling stigmatized. Many dementia stereotypes highlight losses (e.g., loss of self) and negatively position the person as a passive, dependent care recipient. Here, we present findings from a qualitative study of people living alone with dementia (N=10) in the community that challenge these stereotypes. Analysis of in-depth interviews revealed that many participants resisted the spoiled identity label through active engagement in the community such as participating in paid employment, providing care for neighbors and family members, and volunteering. Overall, findings underscore the need to rethink and challenge common perceptions of PLWD that are focused solely on care, to recognize their active and valuable role in the lives of others. How PLWD negotiate these identities should inform policies of dementia in community.

How involved are involved fathers in Hungary? Exploring caring masculinities in a post-socialist context

2020 ◽  
Vol 9 (3) ◽  
pp. 487-502 ◽  
Author(s):  
Judit Takács
Keyword(s):  
Quality Of Life ◽  
Qualitative Study ◽  
Cost Benefit ◽  
Work Life ◽  
Active Engagement ◽  
Related Factors ◽  
Life Balance ◽  
Empirical Base ◽  
Depth Interviews

This study examines what can enable or constrain Hungarian fathers to be actively involved in care through analysing interviews by applying Hanlon’s approach to caring masculinities as valued identities for men and Dermott’s concept of intimate fathering. The empirical base of this qualitative study ‐ the first of its kind in Hungary ‐ is a collection of 55 semi-structured in-depth interviews. Several interrelated factors were shown as potentially enabling or constraining men’s active engagement in their paternal role, including work- and work‐life balance-related factors, practical cost-benefit calculations, quality of life concerns, childhood socialisation patterns and attitudes towards the gendered parenting models of one’s own parents.

scholarly journals Athletes with Neurodegenerative Disease: A Phenomenological Exploration of Family Members’ Experiences

2021 ◽  
Author(s):  
Matthew Smith ◽  
Georgia Young ◽  
John Batten ◽  
Keith Parry ◽  
Rosie Collins ◽  
...  
Keyword(s):  
Qualitative Study ◽  
Neurodegenerative Disease ◽  
Coping Strategies ◽  
Lived Experiences ◽  
Family Members ◽  
Emotional Responses ◽  
Raising Awareness ◽  
And Coping ◽  
Depth Interviews ◽  
Phenomenological Exploration

This qualitative study involved in-depth interviews with 15 family members (mainly partners and children) of deceased athletes who experienced deterioration in their neurological health towards the end of their life. The purpose of this study was to examine the stressors these family members experienced with the ailed players, their emotional responses to their family member’s condition, as well as the coping strategies they used. Vertical and horizontal thematic analyses were conducted on the data, which revealed five distinct temporal stages, a range of emotional responses, as well as accompanying stressors and coping strategies at each temporal stage. The findings are presented as an ethnodrama, capturing the lived experiences of participants. This ethnodrama aims to resonate with those caring for family members who are experiencing deteriorating neurological health, while also raising awareness of the various emotional responses of the individuals in these situations, as well as inviting dialogue and reflection about these issues.

scholarly journals Meaning Through Caregiving: A Qualitative Study of the Experiences of Informal Carers

2019 ◽  
Vol 50 (3) ◽  
pp. 682-700
Author(s):  
Chak K Chan ◽  
Tom Vickers ◽  
Adam Barnard
Keyword(s):  
Qualitative Study ◽  
Family Members ◽  
Qualitative Investigation ◽  
Meaningful Life ◽  
The United Kingdom ◽  
Informal Carers ◽  
Gender Based ◽  
Additional Support ◽  
Role Confusion ◽  
Depth Interviews

Abstract This article reports the findings of a qualitative investigation of the way people find meaning through caregiving. It draws on the results of in-depth interviews with 37 informal carers and 11 stakeholders in Nottinghamshire, the United Kingdom. For most respondents caregiving involved looking after family members—for example, husband or wife, father or mother, young or adult children and mother-in-law. The meaning that respondents found through caregiving motivated them to cope with the difficulties associated with looking after a person in need. This research found that most informal carers operate with long-standing, gender-based understandings of their role, creating a potential risk that using gender-neutral terminology when referring to family members may obscure the subjective values that carers attach to informal caregiving and lead to role confusion. Moreover, although informal carers typically feel obliged to take care of family members in need and may value this role, they often require additional support from the state to reduce the pressures associated with caregiving and to enable them to continue to lead a meaningful life both within and beyond their caring role.

scholarly journals The perceptions of nurses, patients and family members regarding nurses' empathetic behaviours towards patients suffering from cancer: a descriptive qualitative study

2018 ◽  
Vol 23 (5) ◽  
pp. 428-443 ◽  
Author(s):  
Elaheh Ashouri ◽  
Fariba Taleghani ◽  
Mehrdad Memarzadeh ◽  
Morteza Saburi ◽  
Fatemeh Babashahi
Keyword(s):  
Content Analysis ◽  
Psychological Distress ◽  
Qualitative Study ◽  
Cancer Patients ◽  
Nursing Care ◽  
Qualitative Content Analysis ◽  
Family Members ◽  
Oncology Nurses ◽  
Inductive Approach ◽  
Depth Interviews

Background Although evidence suggests that empathic behaviour is an essential component in nursing care that affects the psychological distress experienced by cancer patients, it remains a neglected issue in nursing in Iran. Methods: This study was conducted on 33 participants selected through purposive sampling. Data were collected using in-depth interviews and were then analysed using qualitative content analysis with an inductive approach. Findings: Three categories of data thus emerged, comprising: (a) empathetic attention; (b) empathetic presence; and (c) the facilitators of empathetic behaviour. Conclusions: The findings can help oncology nurses provide more empathetic care to patients and their family members.

scholarly journals “Very busy”: daily reorganization of mothers to care of children with Congenital Zika Syndrome

2020 ◽  
Vol 41 ◽  
Author(s):  
Paulo Roberto Lima Falcão do Vale ◽  
Deisyane Vitória Alves ◽  
Evanilda Souza de Santana Carvalho
Keyword(s):  
Content Analysis ◽  
Qualitative Study ◽  
Health Professionals ◽  
Family Members ◽  
Social Representation ◽  
Thematic Content Analysis ◽  
The Social ◽  
Congenital Zika Syndrome ◽  
Care Practices ◽  
Depth Interviews

ABSTRACT Objective: To understand the experiences and care practices of mothers of children with congenital Zika syndrome. Methods: A qualitative study with collection held in Feira de Santana - Bahia, between September and November 2017, from in-depth interviews and Story-Drawing with 11 family members of children, using thematic content analysis. Results: Mothers take care from experiences with health professionals and groups of mothers. They reorganize themselves in order to optimize time, streamline domestic activities, teach family members, and navigate care spaces. They experience the routine organizing the home, taking care of the children and, specifically, the child with syndrome, referring to: bedtime; giving a shower; changing diapers; feeding; playing; and, stimulating, actions mediated by intense crying and environmental preparation. Conclusion: The experiences are unique and exceptional, conforming the social representation of the mothers as a group, the “mothers of micro”, an aspect that differs from other experiences.

scholarly journals Needs Detection for Carers of Family Members with Dementia

Healthcare ◽  
2021 ◽  
Vol 10 (1) ◽  
pp. 45
Author(s):  
Oriol Turró-Garriga ◽  
Maria del Mar Fernández-Adarve ◽  
Pilar Monreal-Bosch
Keyword(s):  
Qualitative Study ◽  
Social Care ◽  
Family Members ◽  
Community Dwelling ◽  
Social Recognition ◽  
Perceived Needs ◽  
Care Services ◽  
Management Of Resources ◽  
Different Characteristics ◽  
Depth Interviews

Aim: To determine the perceived needs of carers of non-institutionalized family members that suffer from dementia. Methods: Two-steps qualitative study by focus groups of relatives in three centres of different characteristics from the Girona Health Region (step 1) and two in-depth interviews with significant professionals in dementia care (step 2). The analysis was performed based on the interpretation of the transcribed data and the bottom-up coding of categories and themes. The information was triangulated and coding was agreed upon. Results: There were three groups, 26 main carers of community-dwelling relatives with dementia in step 1 and two in-depth interviews with dementia-specialised healthcare and social care professionals in step 2. The demands were categorised according to three main themes: whether they were addressed to the members of care services for more direct and close care, to the agencies for a better joint working and less fragmented system, or to society for better comprehension and social recognition. We emphasize the need for a consultation-liaison reference figure throughout the process both for aspects of greater efficiency in the management of resources and for greater empowerment of carers.

Communicative practices in talking about death and dying in the context of Thai cancer care

2014 ◽  
Vol 10 (3) ◽  
pp. 263-271
Author(s):  
Pairote Wilainuch
Keyword(s):  
Conversation Analysis ◽  
District Hospital ◽  
Death And Dying ◽  
Family Members ◽  
Religious Support ◽  
Communicative Practices ◽  
Health Centres ◽  
Third Person ◽  
Thai People ◽  
Depth Interviews

This article explores communicative practices surrounding how nurses, patients and family members engage when talking about death and dying, based on study conducted in a province in northern Thailand. Data were collected from three environments: a district hospital (nine cases), district public health centres (four cases), and in patients’ homes (27 cases). Fourteen nurses, 40 patients and 24 family members gave written consent for participation. Direct observation and in-depth interviews were used for supplementary data collection, and 40 counselling sessions were recorded on video. The raw data were analysed using Conversation Analysis. The study found that Thai counselling is asymmetrical. Nurses initiated the topic of death by referring to the death of a third person – a dead patient – with the use of clues and via list-construction. As most Thai people are oriented to Buddhism, religious support is selected for discussing this sensitive topic, and nurses also use Buddhism and list-construction to help their clients confront uncertain futures. However, Buddhism is not brought into discussion on its own, but combined with other techniques such as the use of euphemisms or concern and care for others.

An Exploration of Aftercare Services for Female Drug Users

2018 ◽  
Vol 30 (2) ◽  
Author(s):  
Talent Mhangwa ◽  
Madhu Kasiram ◽  
Sibonsile Zibane
Keyword(s):  
South Africa ◽  
Qualitative Study ◽  
Drug Users ◽  
Service Providers ◽  
Service Users ◽  
Rehabilitation Centre ◽  
Aftercare Services ◽  
Data Source ◽  
Female Drug Users ◽  
Depth Interviews

The number of female drug users has been on the rise in South Africa, with statistics reflecting a rise in the number of women who attend treatment centres annually. This article presents empirical data from a broader qualitative study which aimed to explore perceptions concerning the effectiveness of aftercare programmes for female recovering drug users. The main data source was transcripts of in-depth interviews and focus groups with both service users and service providers from a designated rehabilitation centre in Gauteng, South Africa. Framed within a biopsychosocial-spiritual model, this article explores the perceptions and meanings which the female recovering drug users and the service providers attach to aftercare programmes. The findings of the research outlined the range of factors promoting recovery, alongside noteworthy suggestions for improvement in aftercare services. While acknowledging multiple influences on behaviour, this article highlights the significance of these findings in planning and implementing holistic aftercare programmes.

scholarly journals Communication surrounding initiation and withdrawal of non-invasive ventilation in adults with Motor Neuron(e) Disease: clinicians’ and family members’ perspectives

2021 ◽  
pp. 205343452110101
Author(s):  
Charlotte Chapman ◽  
Sara Bayes ◽  
Moira Sim
Keyword(s):  
Family Members ◽  
Interpretive Description ◽  
Invasive Ventilation ◽  
Percutaneous Gastrostomy ◽  
International Guidelines ◽  
Non Invasive ◽  
Non Invasive Ventilation ◽  
Percutaneous Gastrostomy Tube ◽  
Depth Interviews ◽  
Deceased People

Introduction International guidelines recommend that health care clinicians communicate with people with MND and their family members about non-invasive ventilation (NIV) and percutaneous gastrostomy tube (PEG) prior to or at the onset of respiratory symptoms. This study sought to discover the degree to which these recommendations are followed in practice. Methods Interpretive Description methodology was employed. Nineteen clinicians experienced in caring for people with MND, six relatives of recently deceased people with MND and one person with MND participated in semi-structured in-depth interviews. Clinicians’ accounts of NIV and PEG related communications were compared to family member participants’ recollections of their own discussions with clinicians. Data were analysed thematically. Results Six major themes emerged that together capture the factors that impact practitioner-patient-family communications about NIV and PEG. Some clinicians were unaware of MND guidelines particularly communicating the burdens or possible withdrawal of NIV or found them challenging to implement. Consequently, family participants reported that they and their relatives with MND found clinicians’ communication on these topics inadequate. This led to them ‘topping up’ their knowledge from less authoritative sources, predominantly the internet. Discussion Clinicians’ lack of awareness of the international guidelines and discomfort about discussing the benefits and burdens of NIV and PEGs means some people with MND and their families may be unprepared for the consequences of using and ceasing NIV.

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