Proceedings of The National Conference
On Undergraduate Research (NCUR) 2012
Weber State University, Ogden Utah
March 29 – 31, 2012
Effects of Perceived Stigma Amongst Parents of Children with
Mitochondrial Disease
Olivia Bolner
Department of Psychology
Massachusetts College of Liberal Arts
375 Church Street
North Adams, Massachusetts 01247 USA
Faculty Advisor: Dr. Sharon Claffey
Abstract
Mitochondrial disease (mito) is a rare and often debilitating illness that affects children and adults. This disease is
caused by a failure in the mitochondria, in which they no longer are able to produce the energy needed for cells to
survive38. Mito is a progressive and life limiting disease that severely affects children. There have been numerous
studies that have examined the effect of perceived stigma on parents who have a child with a mental illness11, 23.
According to Goffman18 stigma is the way society views those who have a mental illness, usually in a negative way.
Since mito is not classified as a mental illness, we were interested in seeing if perceived stigma exists with a disease
whose physical manifestations could possibly produce these feelings of perceived stigma. The current study will
examine parents of children with mito. It is hypothesized that parents will perceive stigma is attached to them, even
with a disease that not many people know about, which will lead to an increase in stress and an increase in
depression. Also, it is hypothesized that the more stigma a parent perceives they have, the more likely they will use
social comparison when to comes comparing their child to someone else’s child. A survey was administered on an
online support group for parents of children with mito, Parent2Parent. Fifty-eight parents, mean age 34, all of whom
have at least one child with mito (or a similar metabolic disease) participated in the survey. A significant positive
correlation was found between perceived stigma and depression and between perceived stigma and stress. There was
also a significant positive correlation between perceived stigma and social comparison. These results show that
parents perceive they are negatively stigmatized and this stigmatization leads to an increase in stress and depression.
Parents who perceive stigma also will use social comparison more. It is hoped that this study will help spread
awareness of mito and also help those whose lives are affected by mito face the everyday issues they encounter.
Keywords: Mitochondrial Disease, Perceived Stigma, Social Comparison
1. Introduction
Mitochondrial disease (mito) is a rare disease that mostly affects children at a young age but can also affect adults30.
Since it is a rare and essentially unknown disease in the public eye, little is known about what causes it. What is
known, so far, is that mito is caused by a failure in the mitochondria. Mitochondria are special compartments located
throughout the cells in the body whose main job is to produce energy needed for sufficient cell growth and life.
When, however, the mitochondria stop producing the energy needed to support cell growth cells start to die which
eventually can lead to whole body system failures and even death. This failure in the mitochondria is either due to
genetics or just a spontaneous mutation within the cell’s DNA. According to Naviaux30 mito affects every part of the
body but causes the most damage to the brain, heart, liver, skeletal muscles, kidneys, the endocrine, and respiratory
systems. Symptoms vary according to the severity of the disease but the most common are loss of motor control,
muscle weakness, swallowing difficulties, poor growth, cardiac disease, developmental delays, and susceptibility to
infection.
Since mitochondrial disease is so similar to other diseases, and not many doctors know about it, finding and
getting a correct diagnosis can be time consuming and stressful. To determine if mito is present, doctors will often
times perform blood tests, do muscle biopsies, do a spinal tap, or do some extensive brain scans and medical
imaging36. As Cohen7 described in his article, there is no cure for mito but there are ways to deal with it. The main
goals of treatment are to alleviate the symptoms and attempt to slow down the progress of the disease, as best as
possible. To help accomplish and achieve these goals, the best thing to do is to take lots of vitamins, avoid stressful
situations and go on a strict diet. Stigma is an ongoing and imposing issue for parents who have a special needs
child. Especially with mito, there is a variation in the presentation of the disease (e.g. some kids in wheelchairs,
some look normal) but not much is known about the progression of the disease which can be hard for the parent. The
current study looks at the effect of perceived stigma of parents who have a child with mitochondrial disease.
1.1. Online Support Groups And Social Support
With a disease such as mito, that is not very well known, there is an increased need for parents to resort to online
support groups in order to gather information about their child’s illness. Online support groups take many forms
ranging from bulletin boards, newsgroups, and chat rooms but they all allow for the individual to post or read
messages – in real or delayed time1. The Internet is now the primary source of information for anything health
related. In 2002, approximately 93 million American adults went online to search for information about their
health17. Awaiting a diagnosis of mito can be a very stressful time for parents, who often resort to online support
groups to help them find their own diagnosis and provide more social support.
Even after a diagnosis, parents of children with serious mental illnesses have voiced the need for increased
support34 and with the increase of internet usage, parents are resorting to the web to find the support they need.
Parents always want more information and assistance and for those families who live far away from cities, or from
the closest specialist, the only way to get support and understanding from others in the same situation is to turn to
the internet33.
Scharer33 says that social support comes in many forms ranging from expression of positive affect between people,
social reinforcement, giving of actual or symbolic aid of some kind, or providing guidance or information. Birch2
claims that there are four types of social support that are fundamental to gaining the support that one is ultimately
looking for. There is emotional support, informational support, material support and appraisal support. Emotional
support is the offering of care or sympathy - just listening to someone or just being available to them. Informational
support is the sharing of knowledge and telling people where to go to look up critical information. Material support
is providing money or other assistance and appraisal support is providing feedback, praise or suggestions. Social
support is a huge component when it comes to coping and dealing with a child with special needs. The online
community makes the parent feel like they are not alone and that other people are in the same predicament as they
are and therefore they understand everything they are going through. Online support groups are excellent providers
of informational and emotional support32 because parents can gain the information they need and also get the
emotional support from someone who is in the same situation as themselves.
1.2. Stigma
According to Goffman18, stigma has many facets to it ranging from someone having a personal characteristic that
deviates from societal norms, social stereotyping, or categorization because someone has a mental illness. Perceived
stigma, the way a person reads another person’s actions and words as stigma28 can have some devastating effects on
their well being and personal self. Holmes and River24 found that most people, who have a severe mental illness and
perceive stigma, have low self-esteem and self-efficacy. Perceived stigma, also, has an overall negative impact on
quality of life19. Self stigma involves having the individual with the mental illness attribute negative reactions,
including shame, secrecy, fear and anticipation of being rejected and discriminated against, towards themselves
because they believe that is how society is going to act around them and is going to treat them poorly10. With self
stigma arises the concern of parental stigma and how parents of mentally ill children are viewed and treated.
Mickelson28 looked at the effect of a problem’s visibility on seeking and receiving social support, while also
looking at the role of stigma. She claims there are four sources of perceived stigma for parents with mentally ill
children: (1) the realization that their child is not “normal” by societal standards, (2) recollection of stigmatized
views that they held regarding “these types of kids” prior to their own child’s birth or diagnoses, (3) feeling
embarrassed, ashamed, or responsible for their child’s condition, and (4) actions of family, friends, and
acquaintances towards the parent or child. She found that mothers in electronic groups perceived more stigma
829
attached to their child’s special needs and were more likely to admit they avoid being in public with their child.
When it came to how often the mothers posted online, Mickelson found that the more the mothers posted publicly,
the more stress they perceived they were experiencing with respect to their child’s special needs. This increase in
perceived stigma amongst mothers in online support groups can be attributed to the fact that there is an increased
awareness and acceptance of social stigma, through the telling of personal stories. Also, since most mothers who use
the Internet have a higher educational background and a greater income39 they might be more aware of society’s
feelings toward delayed children and they might have a higher expectation for their child.
1.3. Depression
There have been numerous studies that have linked stigma and depression together among those individuals with the
mental illness22, 26. Even those who are not affected with a mental illness, but have some other kind of illness that is
usually stigmatized, can also feel the effects of stigma and depression. Li25 looked at HIV/AIDS patients in Thailand
and found that levels of depression were significantly correlated with internalized shame, perceived stigma and
emotional and social support.
As previously mentioned, a lot of studies exist on the relationship between depression and stigma among the
individuals who have the illness, but not a whole lot of studies look at the relationship between parental perceived
stigma and depression. Mickelson27 found a strong positive relationship between depression and perceived stigma.
She also discovered that perceived stigma could also predict an increase in depression later on. On average, most
parents perceived a moderate amount of stigma attached to their child’s special needs. She found that the more
perceived stigma, the more likely it was to affect the individual’s view of themselves and others; therefore leading to
an increase of depression.
1.4. Stress
Having a child with special needs is often one of the most stressful things a person has to deal with. Parents who
have a child with a disability face the same stresses and strains as other families in addition to the stress caused by
their child’s illness8. The major components of this added stress have to do with the adaptation to new roles, the
reorganization of their lives, the coping of care that comes with their child’s illness, accepting their child’s health
condition, managing the condition on a day to day basis, meeting the child’s normal developmental needs, meeting
the developmental needs of other family members, coping with the ongoing stress and periodic crisis, assisting
family members on how to handle their feelings, and the educating of others about their child’s condition6.
Dellve, Samuelsson, Tallborn, Fasth, and Hallberg13 wanted to assess stress, well-being and supportive resources
among mothers and fathers of children with a rare disability. Results showed that mothers of children with a rare
disability showed more parental stress than fathers. It is believed that this higher increase in stress amongst the
mothers is due to the fact that the child’s disability severely affects the mother’s emotional well-being and forces her
to resume a more traditional gender role (i.e. stay at home mother, do all medical appointments, deal with the child’s
education, etc)20. Gray found that the highest prevalence of stress occurred with incompetence, role restriction,
social isolation, spouse relationship problems, and health problems and was highest amongst single mothers or
mothers with more than one disabled child.
1.5. Social Comparison
According to Festinger15, the social comparison theory is the idea that there is a drive within individuals to look to
outside images in order to evaluate their own opinions and abilities. He said that it was best to evaluate attributes
against an objective standard, but when one is unavailable, we tend to compare ourselves with other people, known
as lateral comparison. Festinger also said that people were more likely to compare themselves to others who are
most similar to them so as to allow for accurate self-evaluation. When seeking inspiration, hope or self-improvement
people select upward comparisons where the other person is presented as being in a more favorable position 5, 27. It is
possible that downward comparisons, when the self is presented as being in a more favorable position, might serve
emotional needs by reducing depression and enhancing the ego40.
There is numerous research that exists that examines social comparison among people with a mental illness 3, 4.
Finlay, Dinos and Lyons16 looked at social comparison among people with schizophrenia. The researchers looked at
individuals who were aged 21 to 60 and who had a diagnosis of schizophrenia. After interviewing them about
830
different aspects of their illness and life in the program, the researchers found that the participants were more likely
to have lateral or downwards comparison when comparing themselves to others.
1.6. Our Study
The current study differs from previous studies in that ours looks just at parents who have children with
mitochondrial disease, or a similar metabolic disease. Although similar to Mickelson’s28, the current study varies
due to a different sample and our stress scale was a lot more in depth. She just asked one question; “How serious is
the stress you are experiencing with respect to your child’s special needs?” Most of the previous studies just look at
mental illness, which mito is not. Our study also involves younger children, since mito affects mostly children and
the disease is life-limiting. Also, previous studies have looked at mental illnesses that many people know about (i.e.
autism, schizophrenia, etc) which already have stigma attached to them, due to media and what other people have
said about that illness. Our study looks at two hypotheses: 1) That even with a disease that is not that well known,
and is not classified as a mental illness, parents will still perceive stigma, which will lead them to be more depressed
and stressed and 2) an increase in perceived stigma is related to an increase in the use of social comparison.
2. Methods
2.1. Participants
The participants in this study consisted of 58 parents (55 female and 3 male). The mean age of the participants was
34.02 (sd=5.89, range=22-48).Descriptive statistics of demographic variables are shown in table 1.
Table 1.Descriptive stats for demographic variables
Demographic Variable
Gender
Female
Male
Race
White
Other
Education
High School
Some College
Finished College
Post grad
How Often Do You Visit Parent2Parent?
Never
Twice a Month
Weekly
2 or 3 Times a Week
Daily
Several Times A Day
How Often Do You Post On Parent2Parent?
Never
Monthly
Twice a Month
Weekly
2 or 3 Times a Week
Daily
Several Times A Day
831
%
94.8
5.2
94.8
5.2
3.4
27.6
46.6
22.4
0
1.7
6.9
15.5
39.7
34.5
5.2
8.6
15.5
19
31
13.8
5.2
Fifty-one point seven percent of the participants said that their main occupation was a stay at home mother or
father. The majority (86.2%) said they were married but 70.7% said they themselves were the primary caregiver of
their child/children. Approximately 24 percent believed that the primary caregiver was both themselves and their
spouse.
All participants were recruited through an online support group, known as Parent2Parent. This support group is a
place for parents with children who have mito, or other similar metabolic diseases, to gather and talk about their
child and what is going on with them. A link to the survey was posted on the discussion board, along with an
electronic consent form and an explanation of the purpose of the research. The only requirements were the parents
had to have at least one child who had mito, suspected mito or a similar metabolic illness and be English speaking.
After the survey results were gathered, four winners were chosen at random to win $50.
2.2.Materials
Perceived stigma was measured by using a revised version of Mickelson’s28 stigma scale. Since this current study
was only interested in parental stigma, only questions that referred to this measure where used. Parents were asked
to rate four questions (e.g. “People look down on me because I have a child with special needs”), on a 5 point scale,
about how true or false they believed the statement was, based on how they believe people treat them when they find
out they have a special needs child (1=Definitely false; 3=Neither True or False; 5=Definitely True). The four items
were summed and the mean was calculated for each parent, with higher mean scores indicating greater perceived
parental stigma. Cronbach’s alpha was 0.62.
Depression was measured by using The Center for Epidemiologic Studies Depression Scale (CES-D) 31. Parents
were asked to rate twenty questions, on a 4 point scale, about how often they might have felt or behaved, a certain
way (e.g. “I was bothered by things that usually don’t bother me.”), during the past seven days (1=Rarely or none of
the time (less than once a day); 3=Occasionally or a moderate amount of the time (3-4 days); 4=Most or all of the
time (5-7 days)). Items were reverse coded when appropriate. All items were summed to obtain a score for each
parent, with higher scores indicating more depressive symptoms. Cronbach’s alpha was 0.93.
Perceived Stress was measured by using the Perceived Stress Scale by Cohen, Kamarck and Mermelstein9. Parents
were asked to rate ten questions about their feelings and thoughts during the past month (e.g. “In the last month, how
often have you felt nervous and “stressed”?) using a 5 point Likert scale (1=Never; 3=Sometimes; 5=Very Often).
Items were reverse coded when needed. The items were then summed to obtain a perceived stress measure for every
parent. A higher stress-summed score indicates more perceived stress. Cronbach’s alpha was 0.90.
Social Comparison was measured by using an adapted version of the scale Helgeson and Mickelson21 used.
Twelve questions were posted asking the parents to rate, on a 5 point scale (1=Extremely Unlikely; 3=Neither
Likely Nor Unlikely; 5=Extremely Likely) how likely they were to use this reason to compare themselves to another
parent who has a child with mitochondrial disease (e.g. “So I can get better”). They were also asked “If you had the
choice, who would you look to compare yourself to when thinking of your child’s mitochondrial disease?” The
mean score was obtained for each participant, with a higher score indicating a higher use of social comparison.
Cronbach’s alpha was 0.71.
2.3. Procedure
A link to the online survey was posted on the Parent2Parent forum in November 2010 and again in February 2011.
Eligible participants were shown a consent form, which they signed electronically and then were taken to the survey.
It was estimated that the survey would take approximately 30 minutes to complete. After completion of the survey,
participants were allowed to give their email address if they wanted to participate in the random $50 drawing. A
debriefing statement, explaining the purpose of the experiment, was posted for all participants to see.
3. Results
Bivariate correlations were run between these three major study variables because it was hypothesized that those
parents who perceived they were being stigmatized would have an increase in depression and stress levels. Parents
of children with mito or similar metabolic diseases, did in fact perceive some stigma attached to them because of
their child’s illness (M=10.33, SD=3.44, range = 4-20; possible range = 4-20). Depression was also high amongst
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these parents (M=38.83, SD=11.87, range = 21-64, possible range = 20-80) and so was stress (M=29.67, SD=6.95,
range = 15-43, possible range = 10-50). There was a significant and positive relationship between perceived stigma
and depression (r=0.32, p<0.01) and perceived stigma and stress (r=0.24, p<0.05).
Our second hypothesis was that an increase in perceived stigma is related to an increase in social comparison.
Results showed that most of the parents use some sort of social comparison (M=3.11, SD=0.51, range = 2.25-4.33;
possible range = 1-5) when it comes to their child. When asked “if you had the choice, who would look to compare
yourself to when thinking of your child’s mitochondrial disease (or similar metabolic disease)” 92% of the
participants said they compare themselves to another parent whose child is doing the same as their child and the rest
(8%) said they compare themselves to another parent whose child is doing worse than their own. When asked “when
you look at other parents of children with mitochondrial disease (or similar metabolic disease) what are the three
primary reasons you compare yourself to them” the majority (67.1%) said they compare themselves to others
because they understand the situation better usually due to the fact they are going through the same problems as
themselves. When it came to social comparison and stigma there was a strong, positive relationship between the two
(r=0.32, p<0.05).
4. Discussion
It was hypothesized that even with a disease such as mito that not many people know about parents will perceive
some stigma against them which will lead to an increase in depression and stress. Our second hypothesis was that
stigmatized parents, of children with mito or a similar metabolic disorder, would also resort to using social
comparison. The data supported both hypotheses. Therefore, we can say that an increase in perceived stigma is
related to an increase in depression and stress. Also, an increase in perceived stigma is related to an increase in the
use of social comparison.
Numerous studies27, 29 have confirmed the belief that parents of children with a mental illness are stigmatized.
Farina14 hypothesized that the reason why family members are stigmatized along with the individual who has the
mental illness is due to 1) people believe that those who appear together in public are alike and 2) if someone opts to
associate with a marginal person, he or she cannot be worth much. This theory has not been completely researched
but it is more likely that the public views family members, especially parents, as responsible for their relative’s
mental illness. Most people report being stigmatized when in fact they may not be35 because they believe that others
blame them for their relative’s illness. This could be one reason why parents of mitochondrial disease perceive some
stigma against them due to their child’s disease.
Our study also showed that parents who use social comparisons compare themselves to another parent whose child
is doing the same as their own. The reason why they use social comparison is because the other parent is going
through the same exact situation as themselves and it helps gain a sense of support and understanding. Parents were
more likely to use in-group social comparison, comparing themselves to people who have the same problem as
themselves, more often than other types of social comparison. Crocker and Major12 suggest there might be three
reasons why members of a stigmatized group have a tendency to use in-group social comparisons: because people
often inhabit segregated environments all or a part of the time; because such comparisons will lead to more accurate
information; and because in-group comparisons will protect against the potential threats to self-esteem associated
with the stigma. Being a part of an online support group allows parents the ability to compare their child to someone
else’s child in order to evaluate how they are doing.
In this study, one of the biggest limitations was the sample size. There is a possibility that not many parents of
children with mito are online or they do not know of the Parent2Parent support group. Also, mito is a rare disease
that only affects a small population. It would have been nice to have more men participate with the survey so we
could get a better understanding of how they perceive stigma. Since this was a survey, the issue of social desirability
increases especially when it comes to stigma. Most people probably do not want to admit that they feel stigmatized
against and therefore may lie about it. However, since this survey was posted online and parents could take it in the
privacy of their own home, social desirability is decreased as opposed to if it were a face-to-face survey. Our
perceived stigma scale is also not entirely reliable because Cronbach’s alpha for that scale was less than the desired
0.70. It should be taken into consideration, however, that the original scale was focused on all types of perceived
stigma; just the questions that looked at perceived parental stigma was used in this study. Future studies should
focus on these limitations and try and improve them. Future studies could also explore more aspects of stigma, such
as who they feel stigmatizes them more and how they perceive their other family members to treat them.
833
It is hoped that from this survey parents who have children with mito can get the support they need and realize that
what they are feeling is perfectly normal. For those who are still awaiting a diagnosis, it is hoped that they get the
answers they want and for them to know that there is a place, Parent2Parent, where they can go and talk about what
they are going through. Realizing that one is not alone in the situation helps immensely when it comes to support.
Also, it is hoped that more people become aware of what mito is and push for finding a cure. Raising awareness
about this disease can promote more funding organizations and produce more doctors who are specialized in dealing
with mito. To help those parents who already feel stress and depression, there should be research on developing
programs to help improve support group experience and use.
5. Acknowledgements
The author wishes to express her appreciation to her research faculty advisor, Dr. Sharon Claffey, for her guidance
and helpfulness throughout the entire research process.
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