perceived experience of caring for a wife with stroke

6
Rehabilitation Nursing • Vol. 32, No. 1 • January/February 2007 35 Rehabilitation NURSING Perceived Experience of Caring for a Wife with Stroke Linda L. Pierce, PhD RN CNS CRRN FAHA • Victoria Steiner, PhD • Barbara Hicks, MSN RN CNS • Judy Dawson-Weiss, MSN RN This article presents a 55-year-old husband’s perceived experience of caring for his wife with stroke, as learned from his 1 year of participation in a Web-based support intervention study. In a secondary analysis of data, his narrative entries (n = 213) were coded and drawn to Friedemann’s framework of systemic organization. The themes that emerged from these data were that of the caregiver providing support, offering solutions, and taking control. Friedemann’s system maintenance process dimension was the area that captured most of his experience, which indicated that this caregiver spent a significant amount of his energy in creating control and stability within his environment to maintain congruence or balance in his life. These findings can be used to identify and design interventions, which for male spousal caregivers, affect the quality of their lives. Approximately every 45 seconds, someone in the United States has a stroke. Of the 700,000 people that experience a stroke each year, nearly 76% survive (American Heart Association, 2005). Eighty percent of stroke survivors return home after hospitalization and rehabilitation (Thibodaux Regional Medical Cen- ter, 2005). More than 1 million American adults live with long-term impairments attributed to stroke, and family members provide most of the care for those persons in home settings (American Heart Asso- ciation; Anderson, Linto, & Stewart-Wynne, 1995; Scholte op Reimer, de Hann, Rijnder, Limburg, & van den Bos, 1998). Men make up 44% of this caregiving population. Most male spousal caregivers do not receive any assistance from family members (National Family Caregivers Association, 2000–2004) as they take on responsibility for not only managing household fi- nances and housework, including meal preparation, but also for providing hands-on personal care for their wives, including management of incontinence (Cahill, 2000; Department of Social and Health Ser- vices, 2005). Pierce and Steiner (2004) found that men involved in caring for women were dealing with role changes, in addition to the women’s depression and irritability. Male caregivers experience more emo- tional distress, but they benefit from information, social interaction, and support groups with regard to managing stress. (Anderson, et al., 1995; Lauderdale & Gallagher-Thompson, 2002). According to Mant, Carter, Wade, and Winner (2000), an increase in social activities can improve the quality of life for caregiv- ers. Caring~Web, a Web-based support and education site for caregivers of persons with stroke, is an exam- ple of available assistance, information, and activities (Steiner & Pierce, 2002). This case report describes a male caregiver’s perceived experience in the first year of caring for a wife with stroke, as learned from the discussion group on Caring~Web. Through his archived e-mail messages to group members, other caregivers, and a nurse specialist, his experience of caring became known. Case Report With university institutional review board ap- proval, Thomas (all names were changed to protect anonymity) was one of 103 adult caregivers that were recruits for a research project funded by the National Institute of Nursing Research (NINR). One-half of the participants were given access to the Web-based support intervention called Caring~Web. One of the components of this Web site was a nurse facilitated discussion group for the caregivers called Caretalk. Thomas was an active participant in Caretalk from October 2002 through September 2003. His year- long involvement in the discussion group helped to establish credibility of the data in that prolonged engagement with the other caregivers and the nurse- built trust. In addition, if e-mail messages were not understood, the other caregivers or the nurse could ask for clarification. Thomas was Caucasian, 55 years of age, and a retired operations officer at a local bank. Thomas rated his health as good. On a typical day, he spent 2 or more hours performing tasks related to caring for his wife, Ethel. They lived in an urban setting in the Midwestern United States and did not have out- side physical assistance from children and friends, although he did receive emotional support from fam- ily members and friends. Ethel was Caucasian and 57 years of age with left- side brain damage and right-side impairment from stroke. Her score of 79 on the Functional Indepen- dence Measure (Center for Outcome Measurement KEY WORDS male spousal caregiver stroke Web-based support

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Rehabilitation Nursing • Vol. 32, No. 1 • January/February 2007 35

Rehabilitation NURSING

Perceived Experience of Caring for a Wife with Stroke Linda L. Pierce, PhD RN CNS CRRN FAHA • Victoria Steiner, PhD • Barbara Hicks, MSN RN CNS • Judy Dawson-Weiss, MSN RN

This article presents a 55-year-old husband’s perceived experience of caring for his wife with stroke, as learned from his

1 year of participation in a Web-based support intervention study. In a secondary analysis of data, his narrative entries

(n = 213) were coded and drawn to Friedemann’s framework of systemic organization. The themes that emerged from

these data were that of the caregiver providing support, offering solutions, and taking control. Friedemann’s system

maintenance process dimension was the area that captured most of his experience, which indicated that this caregiver

spent a significant amount of his energy in creating control and stability within his environment to maintain congruence

or balance in his life. These findings can be used to identify and design interventions, which for male spousal caregivers,

affect the quality of their lives.

Approximately every 45 seconds, someone in the

United States has a stroke. Of the 700,000 people that

experience a stroke each year, nearly 76% survive

(American Heart Association, 2005). Eighty percent

of stroke survivors return home after hospitalization

and rehabilitation (Thibodaux Regional Medical Cen-

ter, 2005). More than 1 million American adults live

with long-term impairments attributed to stroke, and

family members provide most of the care for those

persons in home settings (American Heart Asso-

ciation; Anderson, Linto, & Stewart-Wynne, 1995;

Scholte op Reimer, de Hann, Rijnder, Limburg, & van

den Bos, 1998).

Men make up 44% of this caregiving population.

Most male spousal caregivers do not receive any

assistance from family members (National Family

Caregivers Association, 2000–2004) as they take on

responsibility for not only managing household fi-

nances and housework, including meal preparation,

but also for providing hands-on personal care for

their wives, including management of incontinence

(Cahill, 2000; Department of Social and Health Ser-

vices, 2005). Pierce and Steiner (2004) found that men

involved in caring for women were dealing with role

changes, in addition to the women’s depression and

irritability. Male caregivers experience more emo-

tional distress, but they benefit from information,

social interaction, and support groups with regard to

managing stress. (Anderson, et al., 1995; Lauderdale

& Gallagher-Thompson, 2002). According to Mant,

Carter, Wade, and Winner (2000), an increase in social

activities can improve the quality of life for caregiv-

ers. Caring~Web, a Web-based support and education

site for caregivers of persons with stroke, is an exam-

ple of available assistance, information, and activities

(Steiner & Pierce, 2002). This case report describes

a male caregiver’s perceived experience in the first

year of caring for a wife with stroke, as learned from

the discussion group on Caring~Web. Through his

archived e-mail messages to group members, other

caregivers, and a nurse specialist, his experience of

caring became known.

Case Report

With university institutional review board ap-

proval, Thomas (all names were changed to protect

anonymity) was one of 103 adult caregivers that were

recruits for a research project funded by the National

Institute of Nursing Research (NINR). One-half of

the participants were given access to the Web-based

support intervention called Caring~Web. One of the

components of this Web site was a nurse facilitated

discussion group for the caregivers called Caretalk.

Thomas was an active participant in Caretalk from

October 2002 through September 2003. His year-

long involvement in the discussion group helped

to establish credibility of the data in that prolonged

engagement with the other caregivers and the nurse-

built trust. In addition, if e-mail messages were not

understood, the other caregivers or the nurse could

ask for clarification.

Thomas was Caucasian, 55 years of age, and a

retired operations officer at a local bank. Thomas

rated his health as good. On a typical day, he spent

2 or more hours performing tasks related to caring

for his wife, Ethel. They lived in an urban setting in

the Midwestern United States and did not have out-

side physical assistance from children and friends,

although he did receive emotional support from fam-

ily members and friends.

Ethel was Caucasian and 57 years of age with left-

side brain damage and right-side impairment from

stroke. Her score of 79 on the Functional Indepen-

dence Measure (Center for Outcome Measurement

KEY WORDS

male spousal caregiverstrokeWeb-based support

36 Rehabilitation Nursing • Vol. 32, No. 1 • January/February 2007

in Brain Injury, 2002; Granger & Hamilton, 1993)

indicated that she was functioning at a moderate

level. However, her communication and physical

functions were affected by her stroke, as were her

social activities.

Data Analysis

This case report is a secondary analysis of data

previously collected for a larger NINR study. This

method allowed the researchers to analyze the data

in a differing way and to examine questions not

posed in the original study (Norwood, 2000). In order

to prevent bias associated with preconceived notions

about a caregiver’s experience with caring, bracketing

was implemented in this study. Bracketing involved

the investigators identifying and controlling their

self-assumptions or ideas about the experience be-

fore beginning the study (Polit & Beck, 2003).

The narrative electronic data (213 archived e-mail

entries) were analyzed using Norwood’s (2000) rigor-

ous process of content analysis that consists of three

phases: deductive, inductive, and integrative. The

deductive phase entailed converting the data from

narrative form to more manageable units (Norwood).

The four investigators first read the e-mail messages

(uncoded) from the male participant that were posted

to the Caretalk discussion. This enabled them to ac-

quire a sense for the participant’s description of car-

ing. Next, a category scheme was used and data were

coded and sorted. The category scheme was framed

within Friedemann’s (1995) framework of systemic

organization and developed by the researchers from

the larger NINR study (Pierce et al., 2004).

Then, the inductive and integration phases of

analysis began (Norwood, 2000). In the inductive

phase, the four investigators individually labeled

themes that emerged from these coded data. These

themes were then discussed, by the investigators as a

group, until consensus was reached, which helped to

establish credibility of the findings. In the integration

phase, relationships between themes and variations

within themes were identified and woven together

into an integrated whole such as a theory. For the

current study, themes were drawn, as appropriate,

to Friedemann’s (1995, 2005) process dimensions

of system maintenance, system change, coherence,

and individuation, as well as congruence described

in Figure 1.

Findings

The three themes, presented in Table 1, that

emerged from these data were providing support,

offering solutions, and taking control. The themes

were drawn to Friedemann’s (1995, 2005) process

dimensions of system maintenance and coherence,

as Thomas strove for achieving congruence or a bal-

ance in his life during the first year of providing care

to his wife.

Providing support. Thomas received some mes-

sages of support from other members of the Caretalk

discussion group; however, more often, he wrote nu-

merous entries providing emotional support to the

other caregivers. He reached out to these caregivers

and tried to encourage and comfort them. For in-

stance, Thomas said, “I give big hugs or hand shakes

to all caregivers . . . ” and “Welcome to our Caretalk

world. Even though the stroke is serious and care-

giving is a lot of work. Sometimes we try to lighten

up.”

Thomas expressed support for others through

prayer. He shared, “Welcome to our tale of whoops

and then praise to the Lord that progress has been

made.” Thomas offered prayer to other caregivers

during their times of increased stress. For example,

he said, “My prayers are with you all in the hope

that recovery is just around the corner.” Thomas also

shared how important prayers were to him when

he said, “Thoughts and prayers from all [group

members] helped support Ethel and myself in this

part of our life.” In addition, Thomas wrote about

being thankful for successes and offered words of

encouragement to others that encompassed not only

spirituality, but also growth. He said, “Ethel and I

were told that some recovery can take place several

years down the road. I just keep praying and am very

thankful that she has come back to the point she is at

now. Chin up and charge forward.”

Offering solutions. Although sometimes Thomas

asked for information from others, he mostly tried to

be helpful and gave advice or offered solutions based

on his experience of caring for his wife. He said, “Ja-

son, I know when my wife had long therapy sessions

she was ready for a nap…. She still gets tired, if [she]

takes on too many activities. I do not know any spe-

cial secrets. When she had therapy, that was the only

activity for her on those days. Is your wife trying to

do something before going to therapy? Maybe on

those days she should be more restful.”

Thomas also gave advice to others by sharing

his experience of what worked for him and what to

watch out for. He said, “Ethel would let them skip

things (in physical therapy), so I had to watch and see

that they followed through.” Based on Thomas’ past

concerns, he guided other caregivers when they were

not sure of what to do. For example: another caregiv-

er asked about his wife stopping her medication for

depression. Thomas responded, “Michael, anti-

depressants will affect people differently. My wife

Perceived Experience of Caring for a Wife with Stroke

Rehabilitation Nursing • Vol. 32, No. 1 • January/February 2007 37

was on Celexa (citalopram hydrobromide) for a

while. She had her stroke in late summer and stopped

using it by the end of the year. My best advice is con-

tact the doctor and tell him what is going on. Time

and patience is also helpful.”

Thomas also suggested other options that caregiv-

ers may not have thought about. He shared, “Maybe

the holiday could be delayed until YOU can take time

to get things in order, but do not rush it. It is no good

if you are too exhausted to enjoy the holiday.”

Giving advice was Thomas’ way of offering solu-

tions for assistance with caring. He also advised care-

givers to keep a diary of how the exercises learned

in therapy could be applied to daily activities. In

dealing with emotional difficulties, Thomas offered,

“Make a flash card that says ‘You can only yell at the

hired help, I care about you’, and then when he starts

to yell, hold it up.” He also encouraged caregivers

to release their frustrations: “Is there a neighbor that

might stop by to keep him company while you go

screaming through the neighborhood. I can only

imagine how tough it must be.”

Thomas displayed a positive, ‘been there, done

that’ attitude to other caregivers in giving advice and

offering solutions. He noted, “Oh, Julie surely some-

thing good happens every day, no matter how small

it is. But it is the small accomplishments that should

be praised every day. If something did not work out

today, so what. The failures do not have to come up

in conversations, just push the day’s accomplish-

ments. I kept telling Ethel that we are accomplishing

this [stroke recovery] one day at a time. We make it

through today and this is wonderful. Then we wait

for tomorrow’s accomplishments. Head up and push

forward and look for that one good thing that is what

it’s all about. Taking control.”

Thomas spoke frequently about taking control of

what is going on with Ethel, since her stroke. He took

Ethel to her doctor’s appointments and felt respon-

sible for keeping track of all that was going on with

her care. He said, “I feel that part of my caregiving

[role] is making it to all those doctor visits so that

once she leaves the doctor’s office I know what was

said. I sometimes have to refresh the doctor on her

condition or what test she had done someplace else.”

In an early response on Caretalk, Thomas said, “The

show I put on that every thing is under control is

just that [a show].” He verbalized that he felt it was

necessary to protect Ethel. He said, “She knows that

the rest of the jobs at church don’t belong to her and

the word is out if anybody asks her to take something

on, they could be smashed like a bug by her mean

caregiver.” Thomas communicated that it was his

job to watch over Ethel and decide when she could

take on more activities and/or responsibilities. He

acknowledged, “I know Ethel would like to do more,

but she knows that I am watching and ready to flip

the limit switch, if I believe she would be taking on

too much. I think it is wonderful that she wants to do

more, but I am not looking to start over [with having

another stroke].”

He reflected why he needed control over what

happens in Ethel’s life. He said, “Your life changes.

My life value changes started at the time my father

had a massive stroke and died 7 years ago. I started

thinking about what was more important and when

my mom showed signs of needing more assistance

3 years ago, I decided it was time to quit the rat race

and take on the career of caring for her. When Ethel

had her stroke, the burden just doubled.”

During the first year of providing care, Thom-

as spoke of the responsibility of providing care to

Ethel. He wrote, “How does one keep from thinking

of their patient responsibilities even when you are

not right there? I realize you can get someone in to

sit, but I keep going over schedules and thinking if

there is anything else I should be doing.” He wrote

about being there to support her: “I can do my best

for Ethel, letting her reach out to do things that she

is comfortable with and being there to catch her if

Figure 1. Definitions for Process Dimensions

and Congruence

Process Dimensions

• System Maintenance: consists of behaviors that are grounded in tradi-

tion, refer to the structure and process of the family, and pertain to

organizing and operating the family business. System maintenance

comprises roles, rules, organizational patterns, rituals, decision mak-

ing, power structure, and division of labor and targets control and

stability.

– Control Target: focuses on the organizational and regulatory func-

tions of the family with the aim of minimizing or regulating the

effect of change.

– Stability Target: refers to the maintenance of identity in tradition,

values, and cultural beliefs in the family.

• System Change: refers to major alterations of system operations that

result in shifts within the traditional family value system, requiring the

cooperation and agreement of all family members. System change tar-

gets growth and control.

– Growth Target: refers to the ability to change through new under-

standing and examination of beliefs.

• Coherence: refers to emotional bonding and caring relationships

among family members and targets the spirituality and stability of the

family.

– Spirituality Target: refers to being connected and belonging and

results in acceptance of change through adjustment of the system’s

own patterns and rhythms to those of other systems.

• Individuation: refers to the family’s promotion of individual learning

and changing attitudes, taking in and incorporating information, and

sharing opinions and beliefs and targets spirituality and growth.

– Congruence: occurs through balancing and reconciling the four tar-

gets in many areas of daily living. Although congruence is continu-

ally attempted, it is never fully realized because changes and conflict

continuously threaten the system’s operation.

38 Rehabilitation Nursing • Vol. 32, No. 1 • January/February 2007

something goes wrong.” Thomas feared if he did not

limit Ethel’s activities certain disaster would occur.

All her activities might “raise her blood pressure and

then BANG strokesville.”

The following is an example that is representa-

tive of his frustrations. He wrote, “First of all Ethel

didn’t hurt herself, other than her pride. But for some

unknown reason, she just had to get this piece of mu-

sic. So she got in her car and was unable to reach

the pedals very well, because she couldn’t figure out

how to move the seat forward. Then, she backed out

of the garage, missed the house, missed the power

pole right next to the driveway, and shot like a rocket

across the street over the curb on the other side [of the

street], backing in an arc 180 degrees. In this process,

she blew a tire. The force of the back bumper com-

ing up wrinkled the truck lid. Lucky no one was on

the sidewalk or coming down the street. I now have

her set of keys. This is the first bad problem here at

home we have had. Because she was all right and

people were coming to change the tire, I went to play

bridge…it was that or try to construct bars over the

hall doorway, so she could never do this again.”

Discussion

The themes of providing support, offering solu-

tions, and taking control were mostly centered within

Friedemann’s (1995, 2005) process dimension of sys-

tem maintenance. System maintenance (see Table 1)

is aimed at stability and control, and includes actions

that work to maintain the system and protect it from

threatening changes (Friedemann, 1995, 2005). The

actions taken by this caregiver were meant to help

him meet physical, emotional, and social needs,

while maintaining his life and reducing the threats

of change. In other words, system maintenance

represents a guide in life that allowed him to have

a sense of security and autonomy and/or control.

Through supporting others and offering solutions,

this caregiver was helping to maintain other caregiv-

ers’ systems. These caregivers may have been better

able to deal with or adapt to their current situation,

thus keeping their underlying systems stable.

For the theme of providing support, the process

dimension of coherence was also identified. Coher-

ence (see Table 1) represents family identity and

emotional bonding, behaviors that are necessary to

maintain unity. Coherent persons feel secure and

are at peace. Coherence targets stability and spiri-

tuality (Friedemann, 1995, 2005). This male spousal

caregiver was demonstrating coherence in that he

interacted with others and used his faith in God to

provide support.

No themes were identified with respect to Frie-

demann’s (1995, 2005) process dimensions of indi-

viduation or system change. This may be due to the

fact that the discussion that occurred on Caretalk

represented only a segment of his life. Individuation

and/or system change may have occurred, but it was

not shared through his discussion with other care-

givers or the nurse specialist. Furthermore, for true

system change to happen, it may take years before

the change is integrated into life patterns. One year

of caring may not have allowed for this caregiver’s

system change(s) to be known.

Congruence (see Table 1) represents a balance of

forces related to the process dimensions and their

targets of stability, growth, control, and spirituality

and leads to optimal health for both the caregiver and

his/her family (Friedemann, 1995, 2005). Although

this caregiver was doing everything in his power to

preserve his life and find a balance within it, he had

not reached that point during this study or obtained

congruence.

Implications

One implication from these findings is to have

rehabilitation nurses include the caregivers of per-

sons with stroke as someone who also needs nurs-

ing care. Too often caregivers are ignored, and they

are crucial to successful home caring. For example,

when rehabilitation nurses expand their nursing

care to routinely include caregivers, it could raise

the cost of health care, in that there would be time

and resources needed to assess, diagnose, plan,

and evaluate caregiver interventions, in addition

Perceived Experience of Caring for a Wife with Stroke

Table 1. Themes Drawn to Friedemann’s Framework of Systemic

Organization

Theme Process Dimension Systemic Target Congruence

Providing support System maintenance Control stability Balance of process dimen-

sions and systemic targets

Coherence Spirituality stability

Offering solutions System maintenance Control stability

Taking control System maintenance Control stability

Rehabilitation Nursing • Vol. 32, No. 1 • January/February 2007 39

to intervening or treating the person with stroke.

However, increasing the success of home caregiving

by male spousal caregivers, and also their families,

would decrease the amount of healthcare dollars

needed for persons with stroke to live at assisted

living or extended care facilities.

The theme of providing support found this male

caregiver spending much of his time giving help to

other caregivers in the Web-based intervention. This

theme indicated that men have a need or desire to

help others. This finding encourages rehabilitation

nurses to offer male spousal caregivers information

regarding either Web-based or in-person support

groups. Male caregivers can be given a role within

the support group to go to the hospital to meet new

caregivers to talk about what it is like to provide care,

as well as given an outside activity and additional

socialization opportunities. In fact, the second theme

of offering solutions indicated that this male care-

giver wanted to help others by sharing his expertise

in caring for his wife. Another opportunity to use

this information in practice settings is for nurses to

collect specific advice from male spousal caregivers

and put it together in an informational pamphlet for

caregivers about common problems encountered

and successful solutions. The final theme indicated

that this male caregiver spent much of his time in

trying to control factors that he truly had no control

over. His goal was to manage his wife’s life and de-

crease her stress. This is a concern for rehabilitation

nurses, as male spousal caregivers face a potential for

burn out when trying to control situations. Caregiv-

ers may benefit from information about stroke and

what causes stroke to allay their fears, in addition to

talking about real or imagined fears. Individual or

family intensive therapy may help these caregivers,

as over time and in a safe setting, they can have an

open dialog about their fears and work through the

life changes that they endure after the stroke changed

their lives. Men may also profit from outside diver-

sions such as exercise or hobbies to decrease the

amount of time and energy that they might spend

in trying to hold their wives back from returning to

functions that they previously maintained.

Summary

These findings underscore the benefits of a Web-

based support group in providing education, assis-

tance, and socialization to male caregivers that can

be accessed 24/7 at their convenience. Web-based

activities may give caregivers an outlet to vent con-

cerns, offer support, and give advice. By providing

strategies to meet their needs, men may gain knowl-

edge, be more effective in the caring role, receive

helpful support, and use the intervention to ease

the difficult task of providing care to their wives

with stroke.

Limitations of this study reflect that these findings

represent this one male caregiver’s perceived experi-

ence of caring for his wife. The reader must decide

whether these findings have applicability to their

caregiver population. Thus, recommendations for fu-

ture research include examining other male spousal

caregivers to note differences that may be related to

ethnic and cultural aspects of caring or geographical

settings outside of the Midwestern United States.

Conclusions

This case report illustrated a male caregiver’s ef-

forts toward maintaining stability and controlling

his life and environment in caring for his wife with

a stroke. The report also painted a picture of this

man’s use of spirituality. This caregiver put the most

amount of energy into maintaining his system and

protecting his and his wife’s life from the threaten-

ing changes caused by her stroke, while he sought

to find congruence or balance in life. These findings

have the potential to be used by rehabilitation nurses

in a variety of settings to identify and design inter-

ventions for male spousal caregivers that affect the

quality of their lives.

Acknowledgments

The larger research project was supported by

grant RO1NR007650, National Institute of Nursing

Research, National Institute of Health. This secondary

analysis study was supported by a grant from Sigma

Theta Tau International, Zeta Theta at-Large Chapter.

All caregivers, and especially this male spousal care-

giver, are thanked for their participation.

About the Authors

Linda L. Pierce, PhD RN CNS CRRN FAHA, is a professor at the University of Toledo College of Nursing. Direct correspon-dence to her at the University of Toledo, College of Nursing, Mailstop 1026, 3000 Arlington Avenue, Toledo, OH 43614.

Victoria Steiner, PhD, is an assistant professor at the Univer-sity of Toledo College of Medicine.

Barbara Hicks, MSN RN CNS, is an associate professor emer-ita at the University of Toledo College of Nursing.

Judy Dawson-Weiss, MSN RN, is a nurse practitioner at a private practice.

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Physical Activity Barriers and Program PreferencesAmong Indigent Internal Medicine Patients with Arthritis

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