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Grounded theory managing shame
1. Title
Managing Shame: A Grounded Theory of How
Stigma Manifests
In Families Living With Dementia
2019
Ruth Palan Lopez, Karen M Rose, Lauren Kenney
Journal of the American Psychiatric
2. Introduction
Alzheimer’s disease and dementias are irreversible, progressive brain disorders that slowly destroy
memory, language, problem solving, and cognition.
In US, dementia is the 5th leading cause of death for people age 65 years and older.
Early diagnosis could have important benefits to dementia.
With all growing research documents about the existence and negative outcomes of stigma, its still
unknown that how dementia-related stigma produces ill effects.
3. Gap
How family caregivers experience and respond to a
stigma, is important to develop strategies to
overcome stigma and empower family caregivers.
4. Objective of study
This may help explain why many people are reluctant to seek diagnosis and
treatment when they suspect memory difficulties.
Efforts to overcome these negative stereotype save up to $7.9 trillion in
medical & care costs.
In addition, a systematic review found that stigma was a barrier to both
diagnosis and treatment, studies consistently show that active treatments can
improve quality of life for individuals and family members.
6. Methodology
Research philosophy Interpretive
Research approach Inductive
Research strategies Grounded Theory
Time horizon Cross sectional
Sampling technique Random sampling technique
Sample Caregivers of dementia patient
Sample size 13
Measured instrument Interview
Analysis technique NVIVO 11
7. Analysis technique
2 authors R.P.L & K.M.R coded the transcript using Grounded Theory and 3 level
of coding are as follow.
1. Reading transcript and assigning code containing single unit of meaning.
2. Collapse codes with similarities into theme.
3. Examined relationship between and among theme.
8. Results
Shame
Shame associated with dementia was the central theme and major stigma-related difficulty faced
by family caregivers. According to many of the participants, the signs and symptoms of the
dementia were demeaning, disgraceful, and degrading. They referred to a person with dementia as;
Losing control
Becoming like a child
Losing their mind set.
9. Results
Silence
Patient with dementia suffering form silence because they are unable to communicate the pain that
they are suffering.
To protect against the shame associated with dementia, some participants thought that it was better to
ignore symptoms, not to talk about it, and not call attention to it. They described a code of silence that
enveloped their families, friends, and health care providers.
To avoid bringing shame to the person with dementia, some participants silenced themselves among
their friends.
Some participants felt that physicians were not comfortable talking about dementia.
10. Results
Shunning
A form of social rejection, refers to others avoiding contact or association with the family living with
dementia.
The participants in this study reported being shunned because dementia made others uncomfortable
and was painful to witness.
One participant said that she doesn’t feel comfortable with person living with dementia that make
other sad.
Another participant reported that Shunning distanced not only the person with dementia but also the
caregivers.
11. Results
Concealing
Concealing means prevent something from being known or to keep secret.
Participants reported that their family members with dementia hide or concealed themselves from
the others to avoid others knowing about their disease(Dementia).
Another reported, that she was such a social person, and she was very well known when she suffered
form dementia it was very embarrassing for her. So, she stopped talking and isolate herself.
Sometimes family members concealed the person with dementia which had a negative consequence
of further isolating the person with dementia.
12. Conclusion
Shame emerged as the central theme experienced by family caregivers of people with dementia.
Attempting to manage shame, produced 3 categories of responses:
1) silencing and not calling attention to the symptoms
2) concealing the diagnosis
3) shunning and avoiding contact.
Efforts to dispel the misconception that dementia is a shameful disease may be one way to diminish
stigma.
13. Future scope of research
Despite the limitations of the study, it provides novel insights by which stigma may exert its negative
effects.
1. Distinguishing and label human differences.
2. Dominant culture links labeled persons to undesirable characteristics.
3. Labeled persons are placed into distinct categories: separate US from THEM.
4. The labeled persons experience status loss and discrimination that leads to unequal outcomes.
14. Limitation
Small sample size.
Participants were recruited from a memory clinic and, therefore, may not
reflect the views of those who owing to stigma.
Research suggests that stigma may be a shared experience between both
people with dementia and their caregivers, it required additional
investigation for absent stigma owing persons.
According to length of caregiving, cannot draw conclusions about how these
factors may influence the experience of stigma.