see attached
Running head: LIVING WITH CHRONIC ILLNESS 1
Living with chronic illnesses: How does the family treat patients after a diagnosis?
Learner’s Name
Capella University
Name of Course
Name of the Assignment
Month, Year
Living with Chronic Illnesses 2
Abstract
This study aims to figure out the relationship and meaning of the ways that a family treats
a family member with a chronic mental or physical illness. The exploration of the way family
treats those with chronic illness after a diagnosis is essential to understand the perceptions,
behaviors, and communication that surrounds illness. Chronic mental illness will be analyzed
against chronic physical illness to assess similarities and differences in family behaviors.
Participants included individuals selected from local support groups based on the illness as well
as family structure. An ethnographic study would be used to compare both the verbal and
nonverbal relationship between the ill family member and the rest of the family.
Living with Chronic Illnesses 3
Introduction
This study aimed to focus on both chronic physical illnesses and chronic mental illnesses
and the effects on family communication, particularly surrounding the diagnosis of the illnesses.
The family has an enormous impact on the perceptions of illness. In recent times, the
publicity around individuals with chronic illnesses, both mental and physical, has increased
dramatically in the media. From the production of films about those with chronic physical
illnesses to celebrity diagnosis of mental illness, illness is something our society is beginning to
talk about more frequently. However, there are certain stigmas attached to these illnesses that
make it harder for patients and the families to cope with the situation. Most often, because of the
portrayals of chronic illness that romanticize illnesses and do not necessarily show all of the
effects of these illnesses on the patient or the family.
Both mental and physical chronic illnesses are much more complicated than how the
media portrays the disease. These illnesses often produce copious amounts of side effects that
bring a whole new level of challenges to the patient's struggle through the daily life and
readjustment after diagnosis. A side effect that is often not publicized is the relationship that
exists between the patient and the family. Family connections may change drastically with the
diagnosis of and grappling with a chronic illness, changing how family members perceive one
another, how they act, and even how they communicate. All of these things depend upon the
nature of the family, and the illness and produce different changes. However, through all
different types of families and illnesses, communication in situations like these is essential to
understanding one another. According to Rosland (2009), several interviews and focus groups
Living with Chronic Illnesses 4
showed that family members lowered stress, and are central to patient success. In most instances,
the family is the primary caregiver to someone with a mental or physical chronic illness, and the
family relationship is essential in the healing process due to proximity and the support received
from family members. The diagnosis of chronic illness has the potential to change the fabric of
the family dynamic to help accommodate the family member who is ill.
While it is clear that families often change to accommodate, it is unclear how family how
any communication changes since the diagnosis of a chronic illness, if a change is present at all.
Which begs the question: How are those with a chronic illness treated by the families since the
diagnosis? Little research exists regarding the potential changes associated with the newfound
illness. Answering this question will help to make those in a family with one or more person who
is chronically ill more aware of subconscious behavior and will also shed light on the patient’s
perception of the illness, based on the family’s communication about the illness.
This study is essential to the communication field, particularly health communication
because it adds to the ongoing conversation about how to understand people who are chronically
ill and treat them in a world wherein 2012, 117 million people had one or more chronic health
issues (Ward et al., 2014). This study will explore both chronic physical and mental illness in the
context of the family, focusing on marriage, parent-child relationships, and the use of narratives.
It assesses the problems that come with illness, and find out what happens to family
communication when a family member gets diagnosed with a chronic illness.
Living with Chronic Illnesses 5
Literature Review
Chronic physical illness and chronic mental illnesses are reviewed separately here due to
the tremendous differences in the two. In this study, they will be compared against one another to
consider the differences and similarities in how the family member is treated depending upon the
type of illness.
Chronic Physical Illness
Chronic physical illnesses vary in types and intensity, but have one characteristic in
common: they recur throughout time, usually at random intervals. The uncertainty that comes
along with a diagnosis along these lines can much affect family communication and
relationships.
Marriage. Marriage is the basis of most families in many cultures. Keeping the marital
bond strong could be very difficult in the face of a chronic physical illness. A chronic physical
illness could potentially change the daily lives and interactions of the entire marital relationship.
It is essential to discuss the communication that occurs around these illnesses in order to
understand how the family treats the patient after the diagnosis based on research already
conducted around similar communication processes. Badr and Acitelli (2005) found that in
couples that used relationship talk, or talking about the nature and direction of the relationship,
chronically ill couples had more benefit than a couple that did not include someone who had a
chronic physical illness did. This literature proves that in a situation where a spouse is
chronically ill, it is essential to use communication to make one another aware of certain things
such as how one felt about a situation, or what one needs or expects from the partners. Talking
about the state of the relationship can be helpful for chronically ill people to express fears about
the illness and marriage. Berg and Upchurch (2007) suggested that collaborative talk is the type
Living with Chronic Illnesses 6
of communication that correlates with positive results. Findings show that it is vital for married
couples to talk about the situation together to keep an emotionally healthy relationship since
these tactics have been proven to be helpful for the couple. Shuff and Sims (2013) add on to this
by stating that couples that are aware of the partner’s expectations of communication in the
marriage are more successful in supporting one another. Being aware of the partner’s desires and
being able to fill them is central to satisfaction in the relationship’s functioning. Marital coping
and sharing are not limited to relationship talk, however. Another powerful way of sharing
within the family is through narrative.
Narratives. Something that is strongly recognized and praised throughout the literature
on chronic physical illnesses is narratives. Several studies (Freeman & Couchonnal, 2006; Ott
Anderson & Geist Martin, 2003; Walker & Dickson, 2004) stress the importance of narratives
for the family healing process. Narratives are beneficial because they allow researchers to
capture personal accounts of illness, and let the ill person be a gatekeeper to the information
about the illness. Ott Anderson and Geist Martin (2003) state that those with the chronic physical
illness are more likely to actively share if the feelings and perceptions are confirmed by other
people, especially friends and family. Some chronic illnesses have a negative social stigma to
them, and confirmation that people will be respectful is essential to get the patient to open up
about the experiences. Narratives and storytelling help families to communicate about changes
that have taken place. Ott Anderson and Geist Martin (2003) conclude that the ever-changing
identity in the face of illness never stops; it is continuous development. Sharing through the
narrative in cases of chronic physical illness has the potential to better family communication
because the patient can clearly and concisely explain what is happening to them from the
individual’s point of view. A personal account can help the family identify what the patient has
Living with Chronic Illnesses 7
gone through, as well as understand new emerging identities. However, Lorde (1980) points out
a critical paradox where sometimes patients may be empowered by giving a narrative account of
the story, while others may feel anxiety from reliving those moments of the life. According to
Grotcher and Edwards (1990), when participants used communication to reduce the fear of the
illness, the participants discussed the illness more often. Walker and Dickson (2004) believe that
narratives are important in understanding and meeting the expectations of the family member
who is chronically ill. Often people will have expectations for the family members without
verbally expressing them, leaving family members more often than not confused about what
direction to take. However, a narrative or forms of storytelling in the case of chronic physical
illness may reflect some of the patient's unfulfilled needs, and help family members to identify
them.
Chronic Mental Illness
A chronic mental illness can be severe for families to cope with given the negative social
stigmas that exist about the illness in most societies around the world today. Chronic mental
illness in a family member could lead to almost constant care and monitoring, depending upon
the illness and the intensity. Families may find it challenging to cope with or come to terms with
a family member’s diagnosis of chronic mental illness due to the many challenges it presents.
Much of the literature surrounding mental illness in the family is psychology-based, and there is
a strong need for communication-based studies to better understand these unique families.
Marriage. Communication is an essential aspect of the family dynamic for a healthy
marriage. It is the foundation of most families and gives people feelings of stability.
Communication is essential to marriage, but little literature exists exploring the communication
around a diagnosis of mental illness. However, much literature exists on its effects on marriage.
Living with Chronic Illnesses 8
Perry (2014) focused on social networks and stigma concerning those with a severe mental
illness. A spouse is a very prominent and robust part of a married person’s social network. If an
individual is entering or leaving a marriage, social dynamics change in many different ways.
Perry (2014) found that the stigma of mental illness had contact with the social network and the
relationship between the two works ambiguously together, which means that the social network
responded to the mental illness through the thinking, and proving that spouses typically control
family conversations. Spouses decide the climate of the family views and values towards child-
rearing if any exist. Segrin (2006) shows that there is an active call for communication scholars
to explore the way that families interact, especially about mental illness, and that a positive or a
negative attitude can set a precedent for what future family communication will be like based off
of how spouses interact. There are different communication strategies that couples use with
children interaction based on adding mental illness to the family dynamics according to
Schmaling and Jacobson (1990) show that wives that are depressed are more likely to make an
aggressive comment to the husbands than wives that are not depressed would, and depressed
wives have less positive discussions than the counterparts. These aggressive statements could
likely become a stressor for the marriage or produce a negative schema of marriage for children
or adolescents in the family. Segrin (2006) argues that depression has an enormous impact on the
family, and usually creates more problems that result in fueling depression. However, this
assertion could also be true of the communication patterns surrounding may other types of
mental illnesses in the family.
Parent-Child. Consider the parent-child relationship with regards to mental illnesses.
Experts typically agree that parents are the primary caregivers to children and adolescents with
chronic mental illnesses. Literature mainly focuses on the illness from the parents’ perspective,
Living with Chronic Illnesses 9
rather than the child’s viewpoint suggesting that there is little proof about children’s perceptions
of parents’ mental illnesses. Richardson, Cobham, McDermott, and Murray (2013) explained
that parent’s feelings of loss about an adult child with mental illness focus on grieving about
ambiguous losses, like the child’s loss of self or identity. This loss and grieving process have the
potential to shape the families behaviors and patterns of communications. Since there are usually
no tangible effects of mental illness, parents may often find it hard to cope with a diagnosis and
come to terms with it. Even harder for families to process is the fact that in most cultures and
societies in the world, there is a negative social stigma to having a mental illness. Richardson et
al. (2013) also noted that parental grief over the child’s mental illness was not socially
acceptable. Several studies (Richardson et al., 2013; Chadda, 2014) discussed this notion that
parents felt as though the illness or the perception to hide the grief because it is not socially
acceptable. Most of the struggles that parents in this situation face are with the topics of self-
concepts and identities, with a variance to whether it is a personal point of view or the child’s
view. Richardson et al. (2013) found that the child’s illness changed the parents own identity.
Since the identity and self are such fluid concepts, it is essential to understand the self and
different identities as well as the changes that occur with the two in accordance to both the
parents and the children. There is little literature in regards to mental health’s effects on self-
concepts and identities.
Aside from the self, another critical factor to contend when discussing mental illness
between the parents and children is parenting styles effects on these children with mental
illnesses. Hamond and Schrodt (2012) explored the effects of the different parenting styles on
children’s mental health and concluded that there was no statistically significant evidence that
the different styles affected mental health. However, Hamond and Schrodt (2012) continued by
Living with Chronic Illnesses 10
noting that findings indicated that acts of affection and authority make limited, but significant,
improvements to the child’s mental health. When it is the parent in the relationship who is
mentally ill, the communication process is entirely different. As found in Van Loon, Van de Ven,
Van Doesum, Witteman, and Hosman (2014), where adolescents internalizing and externalizing
behaviors were correlated to parents mental illness. Parents with mental illnesses were found to
negatively affect the adolescent or child, the whole family, and even the parent and child’s
interactions (Van Loon et al., 2014). This literature exemplifies that parental mental illness
controls more channels of communication than a child or adolescent’s mental illness does. While
much literature exists about families and mental illness, unfortunately, few scholars focus on the
talk that occurs about the family member with the illness, and the communication around this
topic.
Reviewing the literature leads back to the question: how are those with a chronic illness
treated by the families since the diagnosis? Analyzing both mental and physical illnesses and the
family communication processes around them are essential to furthering the conversation that
communication scholars are creating to understand these unique families.
Methodology
In order to answer the research question, qualitative methods would be most appropriate
to find an answer. Literature on related topics suggests that qualitative methods are most
appropriate (Badr & Acitelli, 2005; Berg & Upchurch, 2007; Chadda, 2014; Freeman &
Couchonnal, 2006; Hamond & Schrodt, 2012; Ott Anderson & Geist Martin, 2003; Richardson
et al., 2013). An ethnographic study, as Keyton (2011) states, it “…allows the researcher to
observe and understand how communication is generated and responded to in a particular
context” (p. 300). The ethnographic would aim to aid researchers’ in the quest to understand the
Living with Chronic Illnesses 11
relationship between participants who are ill and family members. It involves a nonrandom
sampling strategy to get the combination of characteristics needed for the study. Specifically,
purposive sampling, to be able to get close and personal enough with the participants to have
them share details about the personal lives.
This purposive sample depends upon researchers knowing what is typical and atypical of
the populations they are studying. Create a sampling frame of an exhaustive list of chronic
physical and mental illnesses, and select participants based on whether or not someone in the
immediate family suffered from a listed illness. The sample then attends local support groups for
individuals with both mental and physical illnesses. A wide array of illnesses will be selected,
and age will be as varied as possible. Participants who are selected will be contacted via e-mail
or phone call to ask them to participate in the study.
Once participants respond and confirm the consent to take part in the study, the
researcher will begin to go into the family home and talk to family members. Since ethnography
is similar to a participant observation study, the researcher needs to build a relationship with the
families being studied, especially with those who have the mental or physical illness, if possible,
to assess the changes that have occurred in behavior since the diagnosis. Once trust is
established, the researcher can come in and begin recording the conversations about the
diagnosis time and how participants felt. Compare data stories from before the diagnosis period,
for both mental and physical illness affected families. A list of operationalized concepts such as
love, affirmation, avoidance, and fear, will be created to classify the nonverbal actions towards
the ill family member. Collecting both verbal and nonverbal accounts can give a better
representation of the actual behaviors of family members’ actions, both verbally and nonverbally
towards the chronically ill family member. An analysis of the responses to the stories around the
Living with Chronic Illnesses 12
diagnosis and before the diagnosis compared the observed actions of the families with the ill
family member. Record findings for both chronic mental and chronic physical illness, the results
will be cross analyzed to compare and contrast the different verbal and nonverbal
communication styles. Using ethnography will allow for an in-depth and lengthy analysis of
these different families, and the effects of mental illnesses and physical illnesses on family
communication.
Living with Chronic Illnesses 13
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