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Running head: WHY CAN’T WE TALK ABOUT THIS?

Why can’t we talk about this?

The effects of communication between the terminally ill and family caregivers

Theresa Whitlock-Wild

Lewis-Clark State College

Running head: WHY CAN’T WE TALK ABOUT THIS? i

TABLE OF CONTENTS

I. Title Page

a) Chart 1: Percentage of patients living vs deceased 19

b) Chart 2: Terminally Ill patient (TI) who are still living

Terminally Ill patient (TI) who have passed 19

c) Chart 3: Occupation of caregiver 20

d) Chart 4: Communication Satisfaction 20

II. Abstract ii

III. Introduction 2

IV. Review of Literature 4

V. Methodology 13

VI. Results 18

WHY CAN’T WE TALK ABOUT THIS? ii

VII. Works Cited 28

Abstract

This qualitative research study explores communication satisfaction between terminally ill

patients and their family caregivers. Interviews were conducted with fifteen family caregivers to

help provide a more in-depth look at what happens to communication satisfaction between a

patient and their caregiver after a terminal illness has be given.

WHY CAN’T WE TALK ABOUT THIS? 2

Introduction

The focus of this research is to learn whether communication between the terminally ill

and their family members change after a terminal illness diagnosis. While death is an event that

each person will inevitably face, many still find it uncomfortable to talk about with their family

members. Families may shy away from this difficult topic due to the discomfort of facing the

unknown, as well as the emotional trauma death has on loved ones. Many terminally ill patients

may not find comfort in talking to family members, as they are afraid of hurting them or placing

more of a burden on them. Doctors often leave palliative care and information to hospice

workers or caregivers, often leaving family members feeling bereft and alone in their multitude

of emotions. There are studies on the benefits of grief counseling and therapy to help the person

who has come to the end of their life (McClement, S., Chochinov, H. M., Hack, T., Hassard, T.,

Kristjanson, L. J., & Harlos, M. 2007). Therapy is also offered for the family members who must

continue living after their loved one’s death (Bentley, O’Connor, Breen, & Kane, 2014).

Surprisingly, there has been little research done into communication satisfaction of

family members and their loved ones while navigating the often scary or unknown last few

months, weeks or days (Hudson, P., Trauer, T., Kelly, B., O’Connor, M., Thomas, K., Zordan,

R., & Summers, M. 2014, Keeley & Generous, 2015)

Families experience grief and depression during and after the care of their loved ones (D.

Kissane, Lichtenthal, & Zaider, 2008). Anxiety and depression are considered normal for those

diagnosed with a terminal illness, yet studies show those who are terminal and their family


members who take the role of caregiver, experience higher degrees of anxiety and depression (D.

Kissane, Lichtenthal, & Zaider, 2008).

Family caregivers are an important aspect of palliative care. Not only are there few

supportive care strategies in place for caregivers, but studies show the caregiver is at risk for

negative psychological effects, as well as negative experiences and depression about their

financial, social and physical well-being (Hudson et al., 2014, Waldrop, 2007, Waldrop, Milch,

Skretny, 2007). While it is clear that families, especially caregivers, carry the burden and

responsibility of caring for the terminally ill, further studies need to be done to show how

families cope during and after the diagnosis and passing of their loved one.

There has been little research on the communication satisfaction, or lack thereof, between

a terminal patient and their family members. The family must change to accommodate the

diagnosis, but it unclear as to how the communication changes between the family members and

the terminally ill patient. This opens the door to many questions that need to be answered: How

does communication change once the diagnosis has been made? Do patients feel they can

communicate openly with family members and caregivers about their fears? Do caregivers,

especially spouses, stop communicating on an intimate level once diagnosis changes the dynamic

of the relationship? How do loved ones feel about their communication efforts after the patient

has passed?

This study is essential to the field of communications because it opens the dialogue of

how to help people cope during times of high stress. Understanding and helping the patient retain

dignity and a sense of psychological well-being during a time when there is nothing more that

can be done is still a vital element of care. It may also help continue the conversation so that the

caregiver feels as if their needs of communication are being met as well. This study will explore


how communication between those in the healthcare industry (doctors, nurses, hospice staff), as

well as family members, is a vital element to those living with a terminal illness.

Summary of Literature Review

Communication between doctors and nurses, family members and the terminally ill

depends on each individual’s perspective. Communication between all the parties involved at the

end-of-life needs to be addressed separately in order to give an adequate view of the perspectives

of the dying and those around them.

Communication with Medical personnel (physicians, nurses, hospice)

When a patient is diagnosed with a terminal illness, a vital aspect of moving forth is

having medical personnel feel comfortable in discussing death and what to expect in the days

leading up to it (Kelly, B.,Varghese, F.T., Burnett, P.,Turner, J.,Robertson, M., Kelly, P.,

Treston, P. 2008). Families need to know that the doctor is comfortable talking about death and

dying and that the doctor understands the complexity of communicating with multiple family

members with multiple perspectives (Rabow, Hauser, & Adams, 2004). In western cultures, as

recently as the last twenty years, findings show that doctors are still reluctant to provide an

honest discussion about diagnosis, and finding a balance between hope and diagnosis is difficult.

Physicians need to feel comfortable discussing end-of-life decisions with, not only the patient,

but the family members who are taking an active role in decision-making (Cartwright, C.,

Onwuteaka-Philipsen, B. D., Williams, G., Faisst, K., Mortier, F., Nilstun, T., Miccinesi, G.

(2007).

While communication can take place with the physician informally at the bedside or

hallways of a hospital, or in a more formal situation with written documentation, the ultimate


objective is to help the family understand what their loved one’s care should look like, whether

that is giving up, letting go or continuing to try to do everything possible to extend life (Rabow,

Hauser, & Adams, 2004). Research has also shown the importance of having end-of-life

conversations and plans made earlier. Physicians and nurses, as well as the terminal patients,

have reported that one of the top five barriers in providing quality care, was the patient’s lack of

communication (Brighton & Bristowe, 2016).

Studies show that nurses sustain the most contact with those who are dying. An “open

awareness” is a more recent component of human care. The aim of a study conducted in 2010-

2011, was to use a qualitative semi-structured interview study to learn about the transition into

palliative care, where the focus was on maximizing quality of life. The results of this study show

that patients were categorized into three “types.” Patients were either not fully aware of their

prognosis and only acknowledged that they may be entering into the final stages, or they had

discussed their prognosis with their health professionals, but had not internalized the information

that was communicated to them. The other “type” was the patient who did not seem to be aware

of their prognosis and had no interest in obtaining more information (Richards, Ingleton,

Gardiner, & Gott, 2013). A key component is for the physician or other medical personnel to be

comfortable in discussing dying and expectations (Kelly et al., 2008). While it is difficult for one

to accept mortality, it can be especially difficult for physicians who attempt to fight or postpone

death (Krigger, McNeely, & Lippman, 1997).

One study showed that 85% of terminal or seriously ill patients wanted to know if their

doctor felt comfortable communicating death and the dying process to them. The qualitative data

is important information for training of medical personnel providing palliative care (Kelly et al.,


2008). Despite this knowledge, 60-90% of the terminally ill report having never discussed end-

of-life care with their physician (Brighton & Bristowe, 2016).

Many physicians still feel unprepared to discuss end-of-life care with their patients and

their families. Barriers such as patient readiness, waiting for the patient to begin the discussion

are a few that are mentioned. Physicians avoid these discussions out of fear of giving

unwarranted or false hope or causing harm to the patient (Brighton & Bristowe, 2016).

Communication is essential in helping families or caregivers provide care for a loved one

as they approach death. The experience can be considered deeply fulfilling or increased trauma

or burdensome for caregivers. It is important that physicians understand the role they play in this

family unit and support and recognize the burdens of caregiving (Rabow, Hauser, & Adams,

2004).

Although physicians and nursing staff play an important role in communication needs of

the terminally ill, social workers and hospice staff find it difficult to balance the needs of the

terminally ill with their loved ones. End-of-life (EOL) care is stressful for those who are

balancing patients’ needs and the needs of the family members. Social workers are often trained

to focus on the needs of the terminally ill, but they are also dealing with the negative emotional

stresses of fear and regret of family members, as well as those wishing to communicate at EOL

(Generous & Keeley, 2014).

The journey at the EOL is shared by many, and the challenges of communicating at that

time are inherent to a multitude of emotions. Findings show the importance of time and having

final conversations, and social workers would do well to have additional training on how to

guide family members and support them at this time (Keeley & Generous, 2015). Final


conversations are life events that should be cultivated, and hospice/social workers can help

influence the quality of communication for both the patient and the family members, to create

significant and cherished memories (Generous & Keeley, 2014)

Therapy to help with communication between patient and family/caregiver

Studies show the importance of personal dignity for the terminally ill. Physicians direct

care to the patient in the form of information. Family members can then influence the care and

well-being of the loved one diagnosed in either a supportive or erosive way (McClement, S.,

Chochinov, H. M., Hack, T., Hassard, T., Kristjanson, L. J., & Harlos, M. 2007). Studies show

that decisions are often made by the family members for the loved one who has been diagnosed

with a terminal illness. However, this may not always be the best solution. Family members may

wish for aggressive treatment, conflicting with what the patient would prefer. Without

discussion in advance, what is considered quality of life could drastically differ from family

member to patient. This can cause more burden and stress on families, causing distress on the

family unit (Haley, W.E., Allen, R.S., Reynolds, S., Chen, H., Burton, A., &Gallagher-

Thompson, D. 2002)

One tool that can be utilized to help with communication of family members is Dignity

Therapy. Dignity Therapy was designed to provide a legacy-making opportunity by increasing

the patient’s sense of purpose and dignity and quality of life. Over a two-year period, the family

members who participated in Dignity Therapy felt that there was an over-all high satisfaction

with the patient, as they prepared for death, as well as giving the patient a sense of purpose.


However, this study had ethical issues in that the researchers had not anticipated giving the

audio-taped interviews to family members after the patient had died (McClement et al., 2007).

In another such study, Dignity Therapy was shown to enhance end-of-life experience for

the patient, however it involved family caregivers to help support the patient to leave a

documented legacy. The conclusion of this study was that it did not alleviate the caregiver’s

burden, but it did lessen the anxiety and depression in the caregivers (Bentley, O’Connor, Breen,

& Kane, 2014).

Family-centered care is a challenge for palliative care. Work has been done to screen a

family’s functionality and to deem those families who may be at high risk. Assessments during

Family Focused Grief Therapy (FFGT) help clinics to target and provide support to the families.

The argument is that families that have a well-functioning support system do not need further

assessment. However, the FFGT is meant to target those families who are at risk for unhealthy or

extended bereavement, either as a family unit or on an individual basis. The baseline findings

show that the FFGT is a developed model of brief family therapy (four to eight sessions) that

was designed to support families during palliative care and continue onto bereavement.

Communication with Family/Caregiver

Communication about a loved one’s terminal illness illicit different responses from

different family members. Studies show it is important to provide care for the family unit, both

patient and family members. One such study worked to develop a more accurate way of

categorizing or describing the unique characteristic of each family’s unique context. This study

developed the “Six Family Modes” (Waldrop, Milch, Skretny, 2007). Another study used the

FFGT (Family Focused Grief Therapy) in a randomized controlled trial. The trial began after


diagnosis of a terminal illness and continued on for 13 months, post-death. There was no

significant difference in those who completed treatment and those who did not. (Again. this

study was designed to provide therapy for families who need a different pathway for bolstering

those whose family are at risk during the palliative care phase) (D. Kissane, Lichtenthal, &

Zaider, 2008). The results of family members who carry a significant burden as a result of

caregiving are addressed in multiple studies. At the end of life, it is the families and caregivers

who are at the core of decision-making (Rabow, Hauser, & Adams, 2004).

The health and well-being of the caregiver is effected by how well a family functions

during the course of the terminal illness (Waldrop, 2007). Using assessments and management

techniques to help families during distress at the end of life, including cultural factors or other

factors, could help optimize the quality of life for the terminally ill (Zaider &Kissane, 2009).

The term “caregiver grief” is used often for those who care for a loved one. However, it is

considered normal to experience “anticipatory grief,” a new term used to describe caregivers

who are caring for those with a terminal illness. A qualitative and quantitative study was

conducted in New York state in 2001-2002 using a mixed method approach. Sampling was done

to identify caregivers for the terminally ill. Descriptions of the types of fatigue and stress and

anxiety that caregivers experience were part of the physical health findings. The psychological

and emotional well-being were described in the second part of the interview process as paralleled

to the ill person’s decline. Even after death, the bereavement is followed by intense feelings of

guilt, and social awkwardness and inability to resume normal activities without strong emotional

feelings tied to being a caregiver (Waldrop, 2007)

The coined term “anticipatory grief” has caused controversy and resulted in numerous

studies since 1944, when Lindemann (1944) coined the term. Yet studies show that anticipatory


grief can be just as emotional, if not more so, than the emotions following the death of a loved

one (Overton & Cottone, 2016). While each person’s perspective of grief is different, it is

important to understand the difference between grief and depression. It is also important to

understand the difference between what is considered normal grief and abnormal grief. Keeping

an open communication that is supportive is a vital tool for management of emotions and grief

(Krigger, McNeely, & Lippman, 1997). Some studies show depression rates as high as 59% for

caregivers of terminally ill (Hudson, P., Trauer, T., Kelly, B., O’Connor, M., Thomas, K.,

Zordan, R., & Summers, M. 2014)

When family members become aware that their loved one is going to die, they are often

overcome with a multitude of emotions. This makes communication with their loved one much

more difficult. Despite the possible benefits of communicating, the pain and anguish, as well as

the reality that losing their loved one will also change their future social relationships, makes the

end-of life (EOL) conversations a difficult task (Generous & Keeley, 2014).

Final conversations (FC’s) are considered all interactions, verbal and nonverbal, that an

individual has with the terminally ill, from the point of diagnosis till death. Most often they are a

series of conversations over time, not simply one conversation. These conversations allow those

interacting to communicate their thoughts, to put anger and past hurts behind them and to express

their feelings to the patient (Keeley & Generous, 2015).

Communication from the terminally ill

Communication with the terminally ill takes on a new context after diagnosis. Suddenly

conversations that may have been postponed are now considered a priority. When a diagnosis of


a terminal illness is given, individuals give themselves the permission to say “no” to activities

that no longer suit their purpose (Keeley & Generous, 2015).

There is no absolute or expected way of coping with a terminal illness, and there is no

way of understanding how a person will cope with dying without intimately understanding his or

her life, relationships, age, type of illness and religious and general beliefs (Wright, 2003).

Sensitivity and individualized care can help open communication between the patient and

their support team of caregivers, physicians and family members. Evidence of communication

before it is needed supports the benefits of having these discussions, yet many patients do not

participate (Brighton & Bristowe, 2016). Often, the non-ill spouses and loved ones become

uncomfortable when talking about death or dying. This can lead to family members having a

“false” hope that if the subject of death is not brought up, then it may not happen (Wright, 2003).

Time is a factor when considering how to communicate with the non-ill loved ones. The

terminal timeline can make communication a priority, but it can also add to the burden of the

patient. Communication can be hindered by the discomfort and lack of experience in dealing

with difficult topics of discussion. The ending and finality of a relationship, the unknown of

exact time of death, yet knowing it is coming, alters the interactions. Without the diagnosis, most

communication in this context would not take place (Keeley & Generous, 2015).

The burdens associated with communication and EOL care are perceived barriers that

cannot be fixed with a one-type-fits-all approach. Communication at EOL needs guidelines and

strategies, training and advice for everyone, to facilitate a quality of care and end of life that is

deemed acceptable (Brighton & Bristowe, 2016)


Summary of Literature Review:

Studies show that physicians, as well as nursing and hospice staff would benefit in

communicating with the terminally by learning strategies to help the patient cope, as well as help

the family members communicate their needs and the needs of their loved one who has been

diagnosed. There are multiple therapies in place, designed to help the family unit or individual

cope with the diagnosis and to grieve. Family caregivers are under tremendous stress, as

palliative care is extending the terminal illness by months or years, causing burdens, both

physically and emotionally. Studies show that it is important to support the caregiver as much if

not more than the terminally ill patient.

Research has shown the importance of having final conversations near the end of life. It

is beneficial for both the patient and the family members, and physicians and hospice staff can

help facilitate these conversations.

However, there is little research on the communication between terminally ill individuals

and their family members before death. Does the communication change? Data shows the

importance of open awareness and open communication in regards to death, however, there has

been little research in the effects a terminal illness has on the relationship between the patient

and family members. Therefore, the following hypotheses are posed:

H1: Older patients (greater than 50 years old) diagnosed with a terminal illness will report better

communication satisfaction with their family caregiver than those who are younger.

H2: Patients (younger than 50 years old) diagnosed with a terminal illness will report worse

communication satisfaction with their family caregiver.


H3: Caregivers will report lower communication satisfaction with their terminally ill family

member.

Methodology

Understanding the perspectives from the terminally ill patient, as well as the main family

caregivers together and their communication satisfaction is important to understanding the

family dynamic. Terminally ill is defined as hospice eligible. Definition of a “family” caregiver

are relatives and/or people who are in a close or intimate relationship. Information given during

open-ended interviews was gathered to show various viewpoints in hopes to form a larger picture

of the data that was made available.

Participants were invited to participate in an open-ended interview through Facebook

support groups, as well as on the researcher’s personal social media page for caregivers and the

terminally ill patients. Questions including age, sex and relationship to patient were included in

the survey (spouse, parent, child, cousin/niece or nephew)

Telephone and Skype in-depth interviews were conducted with family caregivers and

terminally ill patients, after consent was given orally. Written interviews were not factored as no

participants volunteered to write their answers. Recorded interviews were analyzed from

transcripts of each in-depth interview, and then the experiences regarding quality care and

communication satisfaction were then categorized into the data for the interpretive process.

No terminally ill participants volunteered to participate in this research study.


Participants

Family Caregivers

I interviewed fifteen family caregivers. These caregivers lived throughout the United

States, with one participant living in Canada. I conducted the interviews in three different ways. I

interviewed one participant face-to-face. Eight interviews were conducted through telephone

calls and six interviews were conducted through Facetime Video Chat. All interviews were

recorded and the consent form was read orally to each participant.

Consenting family caregivers were given an open-ended questionnaire to be analyzed

afterwards in regards to their relationship, what they feel is important to them as the primary

caregiver. The intention was to analyze the answers based on their level of communication

satisfaction.

This study was completed in hopes to explore the experiences of ALS family caregivers,

both during their time as a primary caregiver, and if relatable, following bereavement. Particular

attention was paid to the caregiver’s prolonged grief status and to the implications for service

delivery, including palliative care if the terminally ill participant had passed in recent months or

years before the interview takes place.

The instrument to gage the level of communication satisfaction between the terminally ill

and their family caregiver was measured by looking for themes. Each interview was recorded

and transcribed word for word. The approach was an unstructured, open-ended interview where

the caregiver could give as little or as much information as they were comfortable with. Then

compiling all the data into five themes was the key to better understanding of the thoughts and

feelings and perceptions that families face when caring for the dying. After emailing Kristin


Wright with the St. Louis University, she was able to provide the open-ended interview questions

as well as how to categorize the themes. Kristin Wright followed previous unstructured

interviewing styles of characteristic that model the ethnographic investigation in previous studies

(Fetterman,1989, Spradley,1979) There is no one-way, fits all instrument that can describe all the

variances that go into dying and caring for the ill, however, by opening the door to discussion, I

was able to categorize themes that each participant spoke unstructured about. (Wright, K. 2003)

Participant Data for Caregiver:

1. Age of participant (caregiver):

2. Age of person with terminal diagnosis (or at time of death):

3. Are you considered the primary caregiver?

4. Period of time as a caregiver?

5. Relationship to person with terminal diagnosis:

6. What was your most involved level of care during this person’s illness?

o Day-to-day hands-on care

o Intermittent hands-on care

o Rare hands-on care

o Didn’t provide any care but they were still close to me

Open Interview Schedule for Caregiver

1. Please tell me about your experience as a caregiver, beginning with when you first heard the diagnosis?

2. How was the diagnosis relayed?

3. What was your reaction?

4. How did you cope with the shock of this news?

5. From your experience is there a better way this information could have been relayed?

6. When did your partner receive palliative care? What support as the family caregiver did you receive from a palliative care team?


7. And at what stage in the illness was palliative care introduced to you and to your loved one? What lead to you receiving palliative care at those stages of your loved one’s disease trajectory?

8. (If no palliative care was accessed/provided) - What were your reasons for not receiving/accessing palliative care?

9. (If palliative care was accessed/provided)- How did having access to palliative care services affect your feelings/thoughts during that time?

10. In retrospect how do you think it would have helped or hindered you if you had accessed palliative care services?

11. On a day to day basis tell me about how you managed as the primary caregiver?

Prompt: What particular coping strategies do you use?

Data Collection

The purpose of this qualitative research was to analyze the communication satisfaction

between a terminally ill patient and their family caregiver. Before conducting the interviews, I

looked for the available research on communication satisfaction, not only with family caregivers,

but with family physicians and nursing staff, as well as with hospice workers. I also found the

limitations on research, and reviewed the literature. I will explain the data that I was able to

gather, and discuss the identifying themes of the interviews conducted. I will also discuss my

role as researcher, and why I chose this type of qualitative study.

As a wife to a man who has been diagnosed with a terminal illness, I have an “insider’s”

viewpoint. I have been on a journey with a man who is deteriorating daily, and I have met many

other families that are experiencing or have experienced many of the same things I am. I was

intrigued with how the family copes on a daily basis with a terminal illness and how or if the

communication between the caregiver and terminally ill patient changes after diagnosis.


This journey has been a constant roller coaster ride of ups and downs, and fears and sadness

and grief at the loss of future dreams and aspirations. I have joined multiple support groups, and

I speak weekly with other family caregivers of the struggles that pertain to caring for someone

with a terminal illness. My hope, was that by doing this research, I would not only learn coping

strategies from other family caregivers, but that I would help further research about how to help

support families as they navigate end-of-life decisions and discussions about the needs and wants

of a person with a terminal illness and the importance of communication through the journey.

With this study, I hope to bring awareness to the need for better communication for the

terminally ill and their family members, and care teams.

When I began this research, I was hoping to conduct interviews with both terminally ill

patients and family caregivers. I posted the request to participate in my qualitative study on my

personal Facebook page, as well as on the Facebook support groups that I am a member of. I

requested that those who would like to participate contact me privately through instant message

on Facebook to arrange a time to conduct the interview that was convenient for them.

Unfortunately, I was unable to interview any terminally ill patients. The only group that

responded to my request, were the family caregivers of the terminally ill.

I collected the qualitative data by using semi-structured, open-ended questions regarding

their experience. This allowed me to gain a better perspective of their experiences throughout

their journey. Of the fifteen participants, nine of the interviewees had lost their loved one to a

terminal illness at the time of the interview.

Before conducting the interview, I would read the consent form. They were notified that

they could stop the interview at any time and I also informed them that at the end of the

interview, they would be given a telephone number for a licensed clinical social worker. The


social worker would offer their services, if needed, due to the emotional distress the questions

may pose. To date, no participants have called the social worker. I conducted the interviews

from March 24th, 2017 through April 4th, 2017.

Results

The participants ranged in age from 26 years old to 72 years old with a median age of 49.

Twelve participants were female and three participants were male. There was one participant

who became a caregiver when he was 17 years old, however, is currently in his thirties. Five

participants were in their twenties when they became the caregiver. Two participants were in

their thirties, and one man had been in his thirties, however, is currently in his forties. Two

participants were in their forties, four participants were in their fifties, one participant in their

sixties and two participants who are currently in their seventies.

The vast majority of the participants (87%) were or had been caring for someone with ALS

(Amyotrophic Lateral Sclerosis.) One patient has been a caregiver for both parents, beginning

when he was seventeen years old. His father was diagnosed with advanced lung cancer, and later

his mother was diagnosed with congestive heart failure. One caregiver is currently caring for her

husband who is in stage 4 colon cancer.

There was one participant who had been a caregiver for a friend. Three participants were or

had been a caregiver to their mother; one participant had been a caregiver to both parents, and

nine participants are currently or had been caregivers to their spouse. The length of time spent as

the family caregiver ranged from 18 months to 15 years.


Chart 1- Percentage of patients living vs deceased

Caregivers of patient still living Caregivers of patients who have passed

40% 60%

Chart 2- Terminally Ill patient (TI) who are still living (Blue)

Terminally Ill patient (TI) who have passed (Orange)

Caregiver male Caregiver female

012345678

1

5

2

7

Male versus Female

TI (alive) TI (passed) Series 3


Chart 3-

Chart 4 – Communication Satisfaction

Caregivers who noticed improved comm. 60%Caregivers who noticed declined comm. 20%Caregivers who reported no change in comm. 20%

Occupation of caregiver

medicalteacherunknowncaregiverstudentretiredself employed

Caregiver

spouse child friend


Thematic Analysis

The interviews were conducted by using an open interview process. As a person considered

to be an “insider,” I spoke to the participants, not only as a researcher, but as someone who was

also going through the same struggles. I asked questions, and let the participant tell me as much

or as little of their story as they wanted. After the interviews were conducted, I transcribed the

interviews and then looked for general themes in their discussions. I had hoped to look for

themes in each discussion that pertained to communication satisfaction, however, I have learned

that research may begin in one direction, but then take vastly different turns along the way.

Theme 1 – Feelings of guilt or regret

While talking about their loved one, six of the participants talked about regret or guilt in

caring for their loved one. They expressed how they were exhausted and felt alone. Two women

expressed regret at having lost their tempers. They wish they had known how long their loved

one would be alive, and they would have not lost their tempers as easily.

Participant 2 talks about her frustration with her husband,

“I think that I was grieving as I did what I was doing, or along the way. I would become

angry or frustrated and impatient with him and when I stopped to think about why I was doing

that, it was because he would have just lost a function and it was like I was fighting the

progression, and so I would do that by getting frustrated with him, saying, ‘I know you can move

your arm, you just need to keep going.’ “


She would later add, “the last six months when he was so totally dependent on everything, I

was beginning to wonder how long I could do it…..it was hard and frustrating and I think I was

beginning to give up at that point. I was wondering how much longer we could go on like this.”

Participant 12 cared for her husband for three years. She was a full time nurse, as well as the

primary caregiver for her husband. She expressed guilt and frustration looking back at the

experience.

“Honestly, at the time, I was so tired and so stressed. In my mind, this is terrible to say, but

I wanted to know when this was going to be over. I didn’t know how much longer I could do it. I

wish I had known that it wouldn’t be that long. I would have had a lot more patience.”

Theme 2 -Communication between parent and child-

Three participants were caregivers for their mothers. Two of the three had a close

relationship with their mother before the diagnosis. The general thought for them was that,

although it was difficult for them to care for their mother, they would not trade that time with

them. Participant 1 is in her twenties and moved back in with her mother to care for her on a

daily basis. She is a full time student and works full time as well as caring for her mother. She

struggles with her lack of freedom that other women her age have by caring for her mother. She

said she and her mother were not close before the diagnosis but have since learned to

communicate better. She expressed that it changed her relationship with her mother and

communication has become much more fluent between them as a result.

Participant 9 is now in his thirties; at the time he became a caregiver, he was 17 years old.

His father was diagnosed with lung cancer. He dropped out of high school to become the

primary caregiver, as his mother could not drive, and his little brother suffered from mental


issues. His oldest brother was not much help during his parent’s illnesses. He talks about how

his communication changed with both of his parents, because there were things that had to be

done, and learning that the quality of time spent with his parents was more important, since his

father was given six weeks to live.

Theme 3 - Communication between family and doctor at time of diagnosis.

Thirteen participants had been with their family member at the time of diagnosis. The

majority of them said they understood that the doctor had to communicate the diagnosis in blunt

terms. The doctor was responsible for relaying a difficult diagnosis, but several participants

talked about the aloofness of the doctor or the length of time it took to get a final diagnosis. It

took anywhere from 3 months to 6 years to get a final diagnosis. Of the thirteen participants who

were present during the doctors’ diagnosis, seven of them expressed anger at how the doctor

relayed the information.

Participant 11 remembers how angry he was at how the doctor relayed the news to his wife.

They had gone to multiple doctors and had received several wrong diagnoses, and after 6 years,

she went in for an appointment. The doctor came in with several medical students, observed her

chart. After looking quickly at her chart, he said to the medical students,

“I think she is displaying signs of ALS onset.” And then the doctor and medical students left.

His wife was left in a room by herself and given a diagnosis of a terminal illness with no chance

for discussion or communication.

Participant 6 reflects back to when her husband was finally diagnosed. The doctor took her

outside of the room and said, “Now that we know the diagnosis is ALS, you might as well put

him in a nursing home and let him die.”


She refused and would go on to care for her husband for three more years till his death, as his

only caregiver, while raising their two small children.

Out of the fifteen participants, two were nurses and had a medical background. Their

response was understanding at how the doctor relayed the diagnosis. One participant wished that

the doctor would have communicated more effectively. She suggested having diagrams or some

sort of visual aid. Many patients were left feeling hopeless because the doctor communicated the

diagnosis and said the life expectancy was 2 – 5 years, gave them a brochure and then left.

Theme 4 - Communication when palliative care was introduced

Eleven participants have received palliative care for their loved one or are currently receiving

palliative care. Two participants have been offered support from the palliative care team but had

refused it. One participant says she blames herself for not taking the support. Participant 10 is a

full time nurse and feels that palliative care didn’t offer her support due to the fact that she was

already in the medical field.

After participant 9 dropped out of high school to become the primary caregiver for his father,

he felt that the nurses who were caring for his father weekly did not offer him support because he

was a teenager. However, this influenced many of his decisions into adulthood. He would later

finish high school and go on to become a volunteer firefighter and EMT. It also shaped how he

would treat patients and their family caregivers, by taking extra time to explain how to use

equipment or to spend additional time checking on patients after the emergency was over.

Only three of the eleven participants expressed the usefulness and support given to them

personally throughout their caregiving experiences. They reflect back on that time as having had

fewer worries and a nurse who they could call 24/7. They expressed that having palliative care


lessened the stress of having to make additional doctors’ visits and run to the pharmacy to get

additional medications. With palliative care, they were able to have bedside visits, and

medications brought to them in their homes.

Theme 5 - Communication between family caregiver and the terminally ill patient.

Seven participants noted an improvement in their communication satisfaction with their

loved one. Participant 8 talked about the horrors of the disease, but how it allowed her time to

talk with her mother.

“We were always very close, but afterwards, it was more open. I wanted to talk to her more.

I wanted to know more and, you know, I was able to apologize for being a shitty little kid. I was

able to apologize for that Christmas I acted like a brat. I got to apologize, and it was for stuff

she didn’t even remember. This is a crappy disease, and I wouldn’t wish it on anyone, but the

good part is that we were able to talk about things we had never talked about before. I got to

spend time with my mom. I don’t regret any of it. I was a single mom and I never would have

made that time with her otherwise.”

Three participants did not feel their communication changed at all during the time as a

caregiver. Participant 7 feels that she did not change her communication, however, she felt less

satisfied in her communication with her mother as time went on. She felt that her mother was

often not listening to her due to the stress of the disease.

Three participants discussed having to censor their words around their loved one. Their

communication went down because they could no longer speak freely about things without the

constant thought of death always on their minds. Participant 5 said her husband was not the type


to talk about things, and this forced them to deal with many issues he normally would not have

talked about.

Participant 10 expressed frustration at how she now has to communicate with her husband.

“You have to be so careful with your wording and what you say. Talking about the future, or

time, just feels so much more on egg shells and other times you are kind of angry at the words

you had used, wishing you hadn’t.”

She goes on to talk about how her husband has visitors coming to him in the hospital and

how he doesn’t want them there. She mentions that he needs to make up his mind, because he

doesn’t know how long he will have left, then feeling bad at having mentioned it.

Overall, the majority of the caregivers felt an improvement in communication satisfaction

with their loved ones. The caregiver is almost forced to ask very specific questions. Patience

from both parties is required as communication becomes more difficult.

Discussion

I interviewed 15 caregivers who had been or are currently the primary day-to-day caregiver

for a loved one with a terminal illness. I looked for themes in their answers to see if there was a

correlation to communication satisfaction with the terminally ill patient. As each person has a

unique story, it was difficult to find the exact answer I was looking for. I have learned that it is

easy to get lost in the story, and forget about the specific question I was looking for.

In doing this research, I found that there was a distinct difference between communication

satisfaction and relationship satisfaction. They are not the same thing and my research often went

off course. If I am able to continue my research in the future, I will try to ask more specific


questions pertaining to satisfaction between the caregiver and terminally ill patient’s

communication.

While each participant had different feelings about their relationship satisfaction, the

majority showed improved communication satisfaction while caring for their loved one. As an

“insider,” or someone who is also experiencing many of the same feelings and thoughts and

situations, I feel that the participants were more open to discussing these very personal

experiences with me. I cannot say thank you enough to these people who took time out of their

day to share their stories with me. It is a privilege to have heard and shared in their stories, as

well as their sorrows and joys as they have gone through this journey with their loved ones.


Work Cited

Aoun, S. M., Bentley, B., Funk, L., Toye, C., Grande, G., & Stajduhar, K. J. (2012). A 10-year

literature review of family caregiving for motor neurone disease: Moving from caregiver burden

studies to palliative care interventions. Palliative Medicine, 27(5), 437–446.

Bentley, B., O’Connor, M., Breen, L. J., & Kane, R. (2014). Feasibility, acceptability and

potential effectiveness of dignity therapy for family carers of people with motor neurone

disease. BMC Palliative Care, 13(1), 12.

Brighton, L. J., & Bristowe, K. (2016). Communication in palliative care: Talking about the end

of life, before the end of life. Postgraduate Medical Journal,92(1090), 466–470.

Cartwright, C., Onwuteaka-Philipsen, B. D., Williams, G., Faisst, K., Mortier, F., Nilstun, T., …

Miccinesi, G. (2007). Physician discussions with terminally ill patients: A cross-national

comparison. Palliative Medicine,21(4), 295–303.

Davis, B. D., Cowley, S. A., & Ryland, R. K. (1996). The effects of terminal illness on patients

and their carers.Journal of Advanced Nursing, 23(3), 512–520.

de Vogel-Voogt, E., van der Heide, A., van Leeuwen, A. F., Visser, A., van der Rijt, C. C., &

van der Maas, P. J. (2007). Patient evaluation of end-of-life care. Palliative Medicine, 21(3),

243–248.

Generous, M. A., & Keeley, M. P. (2014). Creating the final conversations scale: A measure of

end-of-life relational communication with terminally ill individuals. Journal of Social Work in

End-Of-Life & Palliative Care, 10(3), 257–281.


Haley, W. E., Allen, R. S., Reynolds, S., Chen, H., Burton, A., & Gallagher-Thompson, D.

(2002). Family issues in end-of-life decision making and end-of-life care. American Behavioral

Scientist, 46(2), 284–298.

Hudson, P., Trauer, T., Kelly, B., O’Connor, M., Thomas, K., Zordan, R., & Summers, M.

(2014). Reducing the psychological distress of family caregivers of home based palliative care

patients: Longer term effects from a randomised controlled trial. Psycho-Oncology, 24(1), 19–

24.

Keeley, M. P., & Generous, M. A. (2015). The challenges of final conversations: Dialectical

tensions during end-of-life family communication. Southern Communication Journal, 80(5),

377–387.

Kelly, B., Varghese, F. T., Burnett, P., Turner, J., Robertson, M., Kelly, P., … Treston, P.

(2008). General practitioners’ experiences of the psychological aspects in the care of a dying

patient. Palliative & Supportive Care, 6(02),

Kissane, D. W., McKenzie, M., McKenzie, D. P., Forbes, A., O’Neill, I., & Bloch, S. (2003).

Psychosocial morbidity associated with patterns of family functioning in palliative care: Baseline

data from the family focused grief therapy controlled trial. Palliative Medicine, 17(6), 527–537.

Kissane, D., Lichtenthal, W. G., & Zaider, T. (2008). Family care before and after

bereavement. OMEGA - Journal of Death and Dying, 56(1), 21–32.

Krigger, K., McNeely, J., & Lippman, S. (1997). Dying, death, and grief helping patients and

their families through the process. Postgraduate Medicine, 101(3).


McClement, S., Chochinov, H. M., Hack, T., Hassard, T., Kristjanson, L. J., & Harlos, M.

(2007). Dignity therapy: Family member perspectives. Journal of Palliative Medicine, 10(5),

1076–1082.

Overton, B. L., & Cottone, R. R. (2016). Anticipatory grief: A family systems approach. The

Family Journal.

Rabow, M. W., Hauser, J. M., & Adams, J. (2004). Supporting family caregivers at the end of

life. JAMA,291(4), 483.

Richards, N., Ingleton, C., Gardiner, C., & Gott, M. (2013a). Awareness contexts revisited:

Indeterminacy in initiating discussions at the end-of-life. Journal of Advanced Nursing, 69(12),

2654–2664.

Steinhauser, K. E., Voils, C. I., Bosworth, H., & Tulsky, J. A. (2014). What constitutes quality of

family experience at the end of life? Perspectives from family members of patients who died in

the hospital. Palliative and Supportive Care, 13(04), 945–952.

Waldrop, D. P. (2007). Caregiver grief in terminal illness and bereavement: A mixed-methods

study. Health & Social Work, 32(3), 197–206.

Waldrop, D. P.,Milch, Robert A., Skretny, Judith A. (2005) Understanding Family Responses to

life-limiting Illness: In-depth Interviews with Hospice Patients and Their Family Members.

Journal of Pallative Care, 21(02), pg 88.

Wittenberg-Lyles, E., Washington, K., Demiris, G., Oliver, D. P., & Shaunfield, S. (2013).

Understanding social support burden among family caregivers. Health Communication, 29(9),

901–910.


Wright, K. (2003). Relationships with death: The terminally ill talk about dying. Journal of

Marital and Family Therapy, 29(4), 439–454.

Zaider, T., & Kissane, D. (2009). The assessment and management of family distress during

palliative care Current Opinion in Supportive and Palliative Care, 3(1), 67–71.

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