Ethical aspects of researching subjective experiences in early-stage dementia

2011 ◽  
Vol 18 (5) ◽  
pp. 651-661 ◽  
Author(s):  
Hanna-Mari Pesonen ◽  
Anne M Remes ◽  
Arja Isola
Keyword(s):  
Early Stage ◽  
Family Members ◽  
Subjective Experiences ◽  
Ethical Aspects ◽  
People With Dementia ◽  
The Family ◽  
Research Interviews ◽  
Conducting Research ◽  
Person With Dementia

This article is based on a qualitative longitudinal study that followed the subjective experiences of both people living with dementia and their family members during the early stages of the illness. The purpose of this article is to describe and reflect on the ethical and methodological issues that occurred during data collection. The article focuses on the situation of the person with dementia and the family member and the role of the researcher when conducting the research interviews. Based on the results of this study, conducting research interviews with people with dementia and their family members poses several ethical and methodological challenges that must be addressed. In doing so, ethically sound dementia-specific research methods will be actively developed enhancing our understanding of living with dementia and providing new insights into the care of people with dementia and their family members.

scholarly journals The family accompaniment of persons with dementia seen through the lens of the capability approach

Dementia ◽  
2016 ◽  
Vol 18 (1) ◽  
pp. 55-79 ◽  
Author(s):  
Catherine Le Galès ◽  
Martine Bungener
Keyword(s):  
Capability Approach ◽  
Family Members ◽  
The Past ◽  
People With Dementia ◽  
The Social ◽  
The Family ◽  
And Gender ◽  
Person With Dementia ◽  
The Capability Approach

Using the capability approach initially developed by A Sen as a theoretical framework, this paper analyses both what people with dementia and their families do in response to difficulties in their daily life brought about by the disease, and the reasons they give for acting as they do. Individual and collective interviews and ethnographic observations with 15 persons with dementia and one or more of their family members were conducted. Follow-up interviews were possible for nine families. Results highlight a great diversity in ways of doing things and in accompaniment by family members. Daily adjustments are often hidden or minimized, at least at the onset of the dementia. Later, they become more frequent, repetitive and indispensable but remain influenced by the social and gender roles that existed prior to the illness. The inventiveness of families, in a context marked by various kinds of constraints, is primarily motivated by their desire to maintain the apparently intact abilities of the person with dementia but especially to preserve forms of liberty and what counted for the person, what that person valued before the disease. There are some ways of living with dementia, even when accompanied, which may long remain preferable to others, which better answer to the past and present aspirations of persons with dementia and the purposes of the accompanying persons. It is thus essential that health professionals, as well as society in general, recognize and address this issue.

scholarly journals ‘And so I took up residence’: The experiences of family members of people with dementia during admission to an acute hospital unit

Dementia ◽  
2016 ◽  
Vol 18 (1) ◽  
pp. 36-54 ◽  
Author(s):  
Kay de Vries ◽  
Jenny Drury-Ruddlesden ◽  
Chris Gaul
Keyword(s):  
New Zealand ◽  
Family Members ◽  
Acute Hospital ◽  
Hospital Unit ◽  
People With Dementia ◽  
The Family ◽  
Hospital Beds ◽  
Acute Hospital Admission ◽  
Primary Focus ◽  
Person With Dementia

It is estimated that a quarter of acute hospital beds are in use by older people with dementia at any one time. Little empirical research has been carried out that has specifically examined the day-to-day input of family members into the care of people with dementia during an acute hospital admission. In this article, we present the results of analysis of interviews with 26 family members of people with dementia about their experiences of supporting an admission of a person with dementia to an acute hospital unit in New Zealand. For all family members, the desire to support the person with dementia during their admission was at the forefront and was their primary focus. The theme, ‘And so I took up residence’, exemplifies fully the experiences of all of the family member participants. This study provides evidence that family members are a resource that may be unrecognised, untapped and unsupported in the event of hospitalisation of people with dementia.

Do people with early stage dementia experience Prescribed Disengagement®? A systematic review of qualitative studies

2017 ◽  
Vol 30 (6) ◽  
pp. 807-831 ◽  
Author(s):  
Lee-Fay Low ◽  
Kate Swaffer ◽  
Margaret McGrath ◽  
Henry Brodaty
Keyword(s):  
Early Stage ◽  
Qualitative Studies ◽  
Subjective Experiences ◽  
Self Identity ◽  
Slowing Down ◽  
People With Dementia ◽  
Early Dementia ◽  
Diagnosis Of Dementia ◽  
Person With Dementia ◽  
Diagnostic Support

ABSTRACTBackground:Prescribed Disengagement® is the description of the post-diagnostic advice given to people after a diagnosis of dementia, which explicitly or implicitly suggests that the person should be slowing down or pulling back from activities. This results in isolation, loss of hope, self-esteem and self-identity, and threatens social health. This study aims to review whether Prescribed Disengagement® can be identified in the literature on subjective experiences of people living with early dementia.Methods:A systematic search was performed. Inclusion criteria were original empirical qualitative studies published in English that addressed the subjective experiences of living with a diagnosis of objectively defined early dementia. Thematic synthesis was undertaken.Results:Thirty-five papers involving 373 participants were included. Following a diagnosis, people with dementia struggled with self-identity, independence, control and status, activities, stigma, and how to view the future. Reactions in these areas ranged from active and positive to negative and passive. Many studies reported participants’ dissatisfaction with the way the diagnosis was communicated. There was insufficient information provided about dementia and limited treatments and support offered. The diagnosis process and post-diagnostic support may have contributed to disempowerment of the person with dementia, made it more difficult to accept the diagnosis, and exacerbated negative views and self-stigma around dementia.Conclusions:These results do not support the idea of Prescribed Disengagement®. However disengagement may have been implied during the diagnosis process and post-diagnostic support. Research is needed on how to improve the communication of dementia diagnosis and support people to live well post-diagnosis.

scholarly journals 473 - Post-diagnostic Dyadic Intervention for People with Dementia and their Family Carers

2020 ◽  
Vol 32 (S1) ◽  
pp. 195-195
Author(s):  
Marleen Prins ◽  
Elsemieke van Belzen ◽  
Henriëtte van der Roest
Keyword(s):  
Psychosocial Support ◽  
Early Stage ◽  
Psychosocial Interventions ◽  
Emotional Impact ◽  
Family Carer ◽  
Family Carers ◽  
People With Dementia ◽  
The Family ◽  
The Future ◽  
Person With Dementia

Background and objectives Support directly after the diagnosis is often experiences as inadequate by people with dementia and their family carers. In this phase, appropriate psychosocial support is important to adapt to and cope with the dementia diagnosis. Often, available support is focused on practical matters and not on the emotional impact of the diagnosis. Also, very often problems have already started to accumulate before support is provided. In the US, the intervention SHARE [Support, Health, Activities, Resources, Education] was therefore developed and studied. This intervention is innovative, because it is designed for dyads (e.g., the person with dementia and their family carer) dealing with early-stage dementia. Its’ primary goal is to enhance communication between people with dementia and their family carers and to prepare them for the future. Several years ago, the intervention was adjusted and pilot -tested in the Netherlands, with positive results. This RCT study evaluates the (cost-)effectiveness of the Dutch SHARE intervention.Methods During four or five session and a pre-session, a healthcare psychologist carries out the intervention with dyads dealing with early-stage dementia. This to enhance skills of the dyad to cope with changes and stressors that might be expected in the future due to the dementia. The intervention takes place in an early stage when the person with dementia is still able to participate actively and before the family carer is overwhelmed by care-related stress. The primary outcome measurements are the quality of life of the person with dementia and self-efficacy of the family carer. Secondary outcomes are stress, communication in the relationship and perspective taking measured only for family carers. The design and procedures of the RCT will be presented in this session as well as the content of the intervention and demographic characteristics of participating dyads.Conclusion This intervention increases the ability of the dyad to cope with the disease and capacity to deal with the situation, with positive experiences of participating dyads and professionals. The study enhances knowledge about psychosocial interventions for people with dementia and family carer

scholarly journals Parental perspective: The role of prostheses and prosthetics services in adjusting to a child’s upper limb difference

2020 ◽  
pp. 1-7
Author(s):  
Tara Sims
Keyword(s):  
Coping Strategies ◽  
Peer Support ◽  
Upper Limb ◽  
Family Members ◽  
Parental Adjustment ◽  
Prosthetic Devices ◽  
The Family ◽  
The Impact

BACKGROUND: The impact of paediatric upper limb difference may extend beyond the child themselves to their parents and other family members. Previous research has found that feelings of shock, numbness and loss are common amongst parents and that peer support can be a buffer against stress. OBJECTIVE: The current study aimed to explore the experiences of parents of children with limb difference, and the role of services and prosthetic devices in these experiences. METHODS: Nine parents of children with limb difference participated in either a group (n= 2) or individual (n= 7) interview. RESULTS: Analysis of the interview transcripts revealed four themes – ‘grief and guilt’, ‘prosthesis as a tool for parental adjustment’, ‘support’ and ‘fun and humour’. CONCLUSIONS: Parents may employ coping strategies to help them adjust to their child’s limb difference, including use of a prosthesis, accessing support from statutory services and peers, and use of fun and humour within the family.

INFLUENCE OF BACTRIO-CARRY IN THE FAMILY ON THE COURSE OF ATOPIC DERMATITIS IN A CHILD

2021 ◽  
pp. 114-119
Author(s):  
Vasileva E.A. ◽  
Kuyarov A.A. ◽  
Kuyarov A.V.
Keyword(s):  
Atopic Dermatitis ◽  
Secondary Infection ◽  
Family Members ◽  
Upper Respiratory Tract ◽  
Epidermal Barrier ◽  
The Family ◽  
Mucous Membranes ◽  
High Degree ◽  
Nose And Throat

The pathogenesis of atopic dermatitis (AD) is complex, and at present a unified concept of the development of the disease has not been formed. At the heart of pathogenesis, there is a complex interaction of numerous factors, such as genetic predisposition, dysfunction of the autonomic nervous system and the epidermal barrier. Previously, it has been proven that a high microbial contamination of the affected areas helps to maintain inflammation and aggravates skin dysfunction as a result of chronic inflammation, and favorable factors appear for the attachment of a secondary infection. However, little attention has been paid to dysfunctions of the epidermal barrier, the role of violations of the quantitative and qualitative composition of the microbiota in the development of AD, and this issue remains relevant at the present time. The aim of this study was to assess the effect of the carrier of bacteria on the mucous membranes of the upper respiratory tract in family members on the course of atopic dermatitis in a child. A bacteriological examination of the mucous membranes of the nose and throat was carried out in 34 children with AD and members of their families (74 people). When examining the mucous membranes of the nose and throat in family members of children with AD, it was found that the microflora isolated from family members in more than half of the cases has an increased potential for pathogenicity with a high degree of contamination (CFU lg 3), which forms an increased bacteriological load on the child. The tendency of bacterial carriage was revealed, contributing to the formation in the family of a permanent persistence of microflora with a high potential for pathogenicity. Asymptomatic carriage of bacteria forms an additional epidemiological load on the child, affects the severity of AD and is a risk factor in the development of secondary infection of the skin.

scholarly journals The Role of Family as A Caregiver in Caring for Family Members that are Suffering from Pulmonary Tuberculosis

Jurnal NERS ◽  
2020 ◽  
Vol 14 (3) ◽  
pp. 362
Author(s):  
Beti Kristinawati ◽  
Annisa Muryadewi ◽  
Ana Dwi Irianti
Keyword(s):  
Pulmonary Tuberculosis ◽  
Successful Treatment ◽  
Family Members ◽  
Nutrition Support ◽  
Depth Information ◽  
Psychological Care ◽  
Tuberculosis Patients ◽  
The Family ◽  
Transmission Of Disease

Introduction: Families have an important role in the successful treatment of people with pulmonary tuberculosis. The purpose of this study was to obtain an overview of the role of the family as a caregiver in caring for family members suffering from pulmonary tuberculosis.Methods: The phenomenological qualitative design was chosen to obtain in-depth information by interviewing thirteen family members who cared for pulmonary tuberculosis patients determined through a purposive technique. Results: The content of Collaizi's analysis produced five themes, namely: 1) Nonpharmacological therapy is given by the family to treat symptomatic pulmonary tuberculosis 2) Efforts to cut transmission was carried out by the family to prevent transmission of disease, 3) Nutrition support provided by families in treating patients, 4) Instrumental support given by families in caring for pulmonary tuberculosis patients, 5) Emotional support given by families in treating pulmonary tuberculosis sufferers.Conclusion: The family provides physical and psychological care to support the successful treatment of pulmonary tuberculosis. A program is recommended to increase family knowledge in caring for family members suffering from pulmonary tuberculosis. Words are sorted alphabetically.

scholarly journals The function of the social networks of families of hospitalized children

2019 ◽  
Vol 23 (4) ◽  
Author(s):  
Rita de Cássia Melão de Morais ◽  
Tania Vignuda de Souza ◽  
Isabel Cristina dos Santos Oliveira ◽  
Juliana Rezende Montenegro Medeiros de Moraes ◽  
Elena Araújo Martinez ◽  
...  
Keyword(s):  
Social Networks ◽  
Social Network ◽  
Family Members ◽  
Main Role ◽  
Hospitalized Children ◽  
Pediatric Hospitalization ◽  
The Social ◽  
The Family ◽  
Main Components

ABSTRACT Objective: To analyze the role of the social network configured by the family/companion and their implications for their stay during the hospitalization of the child in the pediatric hospitalization unit. Method: Qualitative study with ten family members/companions of hospitalized children. Data collection was done through the technique of individual interview, which occurred in the period from February to December 2015. The analysis was thematic, in light of the theoretical reference of "Social Networks" described by Lia Sanicola. Results and discussion: The main role of the social network was emotional and material support, and the main components of this network were: companion, mother, aunt and daughter, as well as nursing team, physician and other family members/companions. Final considerations and implications for the practice: It was verified that the totality of the interviewees was female, however, the husband was the most important member of the social network for the family members involved, since they perform the material/financial and emotional function. In addition, the participants consider that they are responsible for all care to the family and, in the condition in that they are, they understand it as a favor provided by the other members of the network. Identifying the composition of the social networks of family members/companions provides a better targeting of care in order to strengthen the social support received.

Nets of support for social integration: the family / Redes de apoyo para la integración social: la familia

2007 ◽  
Vol 7 (1) ◽  
Author(s):  
Helena Calvo Botella
Keyword(s):  
Social Integration ◽  
Family Life ◽  
Family Dynamics ◽  
Family Members ◽  
Drug Misuse ◽  
The Family

Es un hecho ampliamente aceptado el hecho de que el abuso de drogas y las conductas adictivas tienen consecuencias negativas en diferentes áreas de la vida familiar. Muchos miembros de la familia pueden mostrar perturbaciones psicológicas, psicosomáticas, afectivas, económicas,… pero paralelamente, es igualmente cierto que las dinámicas familiares pueden infl uir sobre las conductas adictivas y su tratamiento. En este artículo se comentan dicha infl uencia recíproca y el papel de la familia en la integración social del paciente adicto. AbstractIt is widely accepted that drug misuse and addictive behaviours havenegative consequences in different areas of family life. Many family members can show psychological, psychosomatic, affective, economic disturbances…, but it is true as well that family dynamics can infl uence addictive behaviours and their treatment. In this paper this reciprocal infl uence and the role of family in social integration of addicted patients are discussed.

Cognitive Decline and the Changing Self in Relationship

2015 ◽  
pp. 61-75
Author(s):  
Darby Morhardt ◽  
Marcia Spira
Keyword(s):  
Alzheimer’S Disease ◽  
Alzheimer's Disease ◽  
Cognitive Decline ◽  
Family Member ◽  
Family Members ◽  
Well Being ◽  
Family Roles ◽  
The Family ◽  
Person With Dementia ◽  
The Impact

When a member of a family is diagnosed with Alzheimer's disease, the impact of the disease reverberates throughout the relationships within the family. This paper explores the challenges and strengths within one family as members manage and cope with Alzheimer's disease. The person with dementia and his family members are individually interviewed and each person explores the consequences of the disease on personal well-being as well as the relationships within the family. The family demonstrates how dementia in one family member demands flexibility in family roles as they navigate life through the challenges of living with dementia.

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