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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