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The Role of Social Support in the Family andCommunity Integration of Right-Hemisphere StrokeSurvivorsNichole Egbert , Lynn Koch , Harriet Coeling & Denise AyersPublished online: 10 Dec 2009.

To cite this article: Nichole Egbert , Lynn Koch , Harriet Coeling & Denise Ayers (2006) The Role of Social Support in theFamily and Community Integration of Right-Hemisphere Stroke Survivors, Health Communication, 20:1, 45-55, DOI: 10.1207/s15327027hc2001_5

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The Role of Social Support in the Familyand Community Integration of Right-Hemisphere

Stroke SurvivorsEGBERT, KOCH, COELING, AYERSSOCIAL SUPPORT

Nichole EgbertSchool of Communication StudiesKent State University, Kent, Ohio

Lynn KochDepartment of Rehabilitation, Human Resources,

and Communication StudiesUniversity of Arkansas–Fayetteville

Harriet CoelingCollege of Nursing

Kent State University, Kent, Ohio

Denise AyersCollege of Nursing

Kent State University, Tuscarawas, Ohio

The goal of this project was to understand better the communicative processes by which socialsupport can assist right-hemisphere stroke survivors in the process of community integration.Open-ended interviews were conducted with 12 right-hemisphere stroke survivors and theirfamily caregivers. The transcribed interviews revealed 7 challenges (physical, cognitive–per-ceptual, emotional, relationship, employment, financial, and challenges to activities of dailyliving) and three types of resources (formal external, informal external, and internal). Strokesurvivors’ internal resources were shown to be essential for facilitating community integration.Implications for researchers and health care providers are discussed within the framework ofHobfoll’s (1988) conservation of resources theory.

Stroke is a major public health problem with long-termphysical, emotional, and relational consequences. It is esti-mated that up to 700,000 persons have strokes each year,making stroke a leading cause of adult disability in theUnited States (American Heart Association, 2002). Al-though often considered an issue relevant only to olderadults, approximately 28% of stroke survivors (SSs) are un-der the age of 65 (American Heart Association, 2002). SSsfrequently experience impairments of their physical abili-ties and/or their abilities to reason and communicate. When

the stroke occurs in the right hemisphere, uniquecognitive–communicative impairments can occur, includingdifficulty attending to objects in the left visual field, under-standing a speaker’s intent or subtleties, maintaining a fo-cus on the central theme or topic of communicative interac-tions, expressing emotional intents as conveyed byintonation, and appreciating the impact of these impair-ments on one’s daily functioning (Myers, 1999).

As these impairments are often subtle, it is not readily evi-dent to those who do not understand this condition why theseindividuals face marked challenges to successful integrationinto “normal” life. Klonoff, Sheperd, O’Brien, Chiapello,and Dennis (1990) found that standard measures of cognitiveand language functioning underestimate the impact of cogni-

HEALTH COMMUNICATION, 20(1), 45–55Copyright © 2006, Lawrence Erlbaum Associates, Inc.

Correspondence should be addressed to Nichole Egbert, School of Com-munication Studies, Kent State University, Kent, OH 44242. E-mail:negbert@kent.edu

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tive–communicative disorders on SSs’ judgment and socialskills, relationship to the family, ability to perform functionalliving activities, and ability to return to productive work.Scant research exists that addresses the impact of these im-pairments on the ability to integrate back into routine life ac-tivities following right-hemisphere stroke. The goal of thisstudy is to identify the communicative processes by whichsocial support can assist right-hemisphere SSs to integrateback into their families and communities.

Specifically, the term community integration refers to re-establishing, to the degree possible, previously existing rolesand relationships, creating substitute new ones, and assistingpeople in making these changes (Dijkers, 1999). Along withimproved health outcomes, community integration is a de-sired outcome of social support. The outcome of communityintegration, in turn, has important implications for social sup-port and health care, as a large and continually growing bodyof research focuses on the reciprocal relationship betweenhealth outcomes and social support (Gottlieb, 1985; Rose,Bowman, & Kresevic, 2000; Schwarzer & Leppin, 1991;Williams, Giles, Coupland, Dalby, & Manasse, 1990).

SOCIAL SUPPORT AND INTEGRATION

The study of social support can be approached from manyangles. Some scholars adopt an exchange perspective, whereresources are exchanged from support provider to recipientto improve the recipient’s well-being (e.g., Shumaker &Brownell, 1984); a sociological perspective, where the quali-ties of social network members and frequency of communi-cation with these members is assessed (e.g., House, 1981); ora communication-based perspective whereby providers “giveinformation that helps an individual reduce uncertainty abouthimself or herself in relation to others” (Albrecht &Adelman, 1984, p. 20).

In many ways, social support is largely a communicationissue, for communication is the implicit mechanism throughwhich support is conveyed, communication processes con-tribute to the development of individual differences in per-ceived social support, and communication scholars areuniquely skilled at developing suggestions for how socialsupport can be improved in future interactions (Burleson,Albrecht, Goldsmith, & Sarason, 1994). Other reasons whycommunication researchers should be concerned with inves-tigating social support processes include the centrality ofmutual help in the development of interpersonal relation-ships and an overall imperative to understand better how al-truistic communication builds community and fosters moralaction (Albrecht, Burleson, & Goldsmith, 1994; Burleson &MacGeorge, 2002).

Communication researchers have studied social supportprocesses through the lenses of the communication partici-pants, contexts, and messages. To illustrate, Query and James(1989) found evidence that communication competence in-creased support recipients’ satisfaction with social support.

Egbert’s (2003) study showed that familiar situations engen-dered significantly higher levels of social support as opposedto unfamiliar ones. Burleson and colleagues asserted thatperson-centered messages (those that acknowledge the recip-ients’ feelings and seek to put them into context) are regardedas more effective (Burleson, 1985; Burleson & Samter,1985). These are just a few examples of studies that highlightthe role of communication in the provision and receipt of so-cial support.

Many conceptualizations of social support break support-ive behaviors into specific categories. For example, Cobb(1979) referred to emotional, esteem, and network support asthe three major types of social support. Gottlieb and Todd(1979) reported aspects of social support as emotionally sus-taining behaviors (trust), problem-solving (suggestions), in-direct persuasive influence (intervening), and environmentalaction (removing the stressor). Similarly, the framework usedin many studies, including this one, includes House’s (1981)emotional support (i.e., listening), appraisal support (i.e.,feedback), informational support (i.e., advice and informa-tion), and instrumental support (i.e., money or physical assis-tance).

Issues of social support are particularly crucial to chroni-cally ill patients such as SSs, as social support may contributeto outcomes that relate to an individual’s ability to live inde-pendently and regain previously held life roles (Penninx etal., 1999). Although some studies have reported that emo-tional, informational, and instrumental social support func-tion to speed recovery from stroke (e.g., Glass & Maddox,1992; MacKenzie & Chang, 2002; Wilcox, Kasl, &Berkman, 1994), others have identified the potential for neg-ative effects on recovery due to a SS’s social network. Spe-cifically, social support issues such as overprotection, un-wanted advice, and problems communicating with familymembers have been demonstrated to be significant hin-drances to the recovery of SSs (Norris, Stephens, & Kinney,1990; Stephens, Kinney, Norris, & Ritchie, 1987; Thomp-son, Sobolew-Shubin, Graham, & Janigian, 1989).

This concern over deficiencies in the social support net-works of SSs has inspired research projects that consider theimpact of caregiving on the family caregiver, the patient, andthe relationship between them (e.g., Grant, Elliott, Giger, &Bartolucci, 2001; Kinney, Stephens, Franks, & Norris,1995). Some programs of research targeting SS and theirfamilies are working toward identifying those family care-givers at risk for burnout and depression, concluding that thepatient’s cognitive impairment (Schwarz & Blixen, 1997)and socioeconomic variables of the providers such as incomeand age (Tompkins, Schulz, & Rau, 1988) could be used toidentify potential problems. Others report that interventionsutilizing techniques such as problem-solving (Grant et al.,2001) and stroke education (Glass et al., 2000) are effectivein improving a caregiver’s ability to facilitate the SS’s recov-ery. Further research into the processes by which networkmembers may facilitate, as well as impede, community inte-gration of SSs is vital to promoting SS recovery, as well as to

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improving our understanding of the communicative mecha-nisms of effective social support.

Previous research in this area has concentrated predomi-nantly on challenges to coping with illness. This project, inaddition to addressing challenges, will also identify re-sources named by SSs and their caregivers for dealing withthese challenges. The purpose of this investigation is to pro-mote a better understanding of the challenges to communityintegration of right-hemisphere SSs and to identify commu-nication strategies to help SSs negotiate these constraints. Soas to allow participants the widest latitude of responses, weused a very open-ended interview format. The questions thatguided our inquiry were (a) What challenges are confrontedby SSs in reintegrating into their communities and families?and (b) What resources are identified by SSs as aids to com-munity and family integration?

METHOD

A grounded theory qualitative research design (Strauss &Corbin, 1990) was chosen for this study. Grounded theory isan effective method when the purpose of the research is to de-velop, rather than verify theory. In addition, a qualitative de-sign enables researchers to gain an understanding of themeaning that research participants assign to the phenomenaof interest (Hagner & Helm, 1994). Thus, the researchersused an open-ended, semistructured interviewing style togather the research data.

Participants

Participants in the study included 12 survivors of right-hemi-sphere stroke (M age = 60.67; SD = 10.13) and 13 of theircaregivers (M age = 59.67; SD = 11.19). Participants in-cluded 2 female and 10 male SSs, as well as 2 male and 11 fe-male caregivers. (In one interview, 2 family caregivers, a wifeand a daughter, were interviewed simultaneously; in all othercases, only 1 caregiver was interviewed.) Participants residedin rural, urban, and suburban communities in a Midwesternstate. Eight of the participants were employed prior to theirstroke, 3 were retired, and 1 was not working. After survivinga stroke, 4 participants were employed, 4 were retired, and 4were unemployed or not working. Two participants lost theirjobs due to the complications related to the stroke, and 3 oth-ers changed careers poststroke.

Procedures

A purposeful sampling procedure was used whereby partici-pants were recruited through stroke support groups (n = 9)and a regional stroke caregiving conference (n = 3). Require-ments for participation in the study were as follows: diagno-sis of right-hemisphere stroke, release from hospital for atleast 6 months, fluency in English, family member (care-

giver) in the home, and willingness and ability to participatein a 1- to 2-hour interview.

All of the interviews except for two were completed in theparticipants’ homes. Two interviews occurred in campusconference rooms. In every case, the SS and caregiver wereinterviewed concurrently and independently. The same inter-view protocol was used for SSs and caregivers (availablefrom first author). Very general, open-ended questionsguided the inquiry, and probes were used to clarify partici-pants’ responses. The interviews lasted approximately 60 to90 min each. Each interview was audiotaped and transcribedverbatim. The final data set included more than 300 pages oftranscripts and field notes.

Coding and Data Analysis

Data analysis consisted of open axial and selective coding(Strauss & Corbin, 1990). The four primary researchers, eachof whom had formal course work and prior experience inqualitative methods, coded the transcripts. In the open-cod-ing phase of analysis, the researchers each read the first fourcompleted transcripts. Each paragraph and sentence was ex-amined closely to identify and label emerging categoricalthemes. Each researcher then generated a list of codes. Basedon this preliminary reading and analysis of these codes, amaster coding scheme was created to analyze subsequenttranscripts. The master coding scheme was revised continu-ously through a process of constant comparison (Strauss &Corbin, 1990) of new data to emerging categories, and tran-scripts were reanalyzed to reflect coding revisions.

Using the coding scheme developed in the initial phase ofdata analysis, the next phase, axial coding, involved the inde-pendent analysis of each transcript by two of the researchers.The other two researchers served as auditors who checkedand challenged the identified codes. Coding discrepancieswere discussed among all the researchers until consensuswas reached. Each interviewer was responsible for keepingfield notes, which were also coded by the researchers. The re-searchers continued to meet on a weekly basis to comparecodes, collapse and refine coding categories, and identifyemerging themes, until data saturation was reached (no newcategories emerged from existing transcripts).

Finally, selective coding was used to locate major themesand interrelationships across coding categories. Frequenciesof responses for each code were calculated to identify promi-nent themes and to locate particular cases that provided com-parisons and contrasts in the data. During this phase, the re-searchers wrote descriptive summaries of the themes andconstructed a conditional matrix to illustrate the major link-ages among the thematic categories.

Trustworthiness of Findings

To enhance the credibility of the research findings, the re-searchers employed several techniques. First, careful atten-tion was devoted to transcript coding analysis. Each tran-

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script was coded by two of the three researchers, with thethird researcher helping to resolve any discrepancies. As theresearchers represented the interdisciplinary fields of healthcommunication, rehabilitation counseling, and nursing, mul-tiple perspectives were included in the data coding. Thesemultiple perspectives should ideally limit the potential biasthat could result from a more one- dimensional interpretationof these data.

Second, corroboration of data was accomplished by ob-taining and comparing information from the SS and the care-giver(s). Third, a member check was conducted by present-ing the emerging categories to a group of SSs and familycaregivers that included some of the research participants. Atthe conclusion of the session, participants confirmed that thethemes were consistent with their experiences.

RESULTS

Coding and data analysis resulted in the identification ofseven types of challenges, five categories of external re-sources, and four types of internal resources. Each of thesecategories will be discussed, followed by a section illustrat-ing the relationships among the categories. Names and otheridentifiable details have been changed to protect the identityof the participants.

Challenges

Survivors of right-hemisphere stroke must work through ahost of unique challenges throughout their recovery. The datafrom these 25 participants revealed challenges encompassingthe following seven themes: physical impairments, cogni-tive–perceptual changes, emotional difficulties, challengesto activities of daily living, relationships, vocation, and fi-nancial challenges.

Physical impairments. Understandably, every SS andcaregiver mentioned stroke-related physical impairments.The most common physical obstacles described by partici-pants in this study included weakness, fatigue, pain, and lossof mobility. For example, one SS related lack of mobility inhis hand, “I can move my fingers…Yeah, but I can’t grip any-thing yet. I can hold a pencil probably, or somethinground…I can probably hold that.”

Cognitive–perceptual challenges. The experiencesof right-hemisphere SSs are often affected by the subtle, yetdifficult challenges of relating elements in context, followinga sequence of logical steps, or solving conceptual problemsthat one encounters on a daily basis. In their interviews, morethan half of the caregivers and SSs described some sort ofcognitive–perceptual difficulty. For some SSs, reading wasdifficult, while others struggled with short-term memory def-icits, confusion, or loss of math skills, resulting in a reduced

ability to handle personal finances. Unfortunately, the testingfor cognitive–perceptual difficulties can also cause emo-tional distress.

What upset him the most was they gave him a round,square, and sphere, and he had to put them together. Icould see him through the window but he couldn’t seeme. I asked him, “Well, how’d you do?” He said, “I’mnot a kid.” There were a lot of four letter words comingout. “They think I’m no good, I’m doing baby stuff,kindergarten stuff. I know that a square don’t go in around thing.” He was crying.

Emotional challenges. Testing procedures were notthe only reported source of emotional distress. Along with 11of the caregivers, 9 right-hemisphere SSs brought up changesin their emotions related to stroke recovery. Many SSswanted to remain isolated in their homes and would declineopportunities for social activities. Some caregivers reportedthat SSs became more sensitive to their emotions, cryingmore often than they had before their stroke. Other caregiversand SSs talked about SSs becoming more anxious, de-pressed, worrisome, frustrated, and even angry “at the dropof a hat” due to the uncertainty of facing the future with aphysical impairment. One SS explained his sense of anxiety:

One of the hardest things is when you’ve built your lifein one direction and then it’s being pulled in anotherbecause of physical limitations. And not only are youdealing with the effects of the stroke, but you’re deal-ing with not knowing what’s ahead in that part of yourlife, either.

Thus, although some of these emotional challenges were at-tributed to organic causes, SSs and their caregivers also at-tributed anxiety, frustration, and depressive symptoms to theloss of functioning and the new challenges of carrying outsuch activities of daily living as preparing meals, toileting,and dressing.

Challenges to activities of daily living. AlthoughSSs often mentioned these types of physical, cognitive–per-ceptual, and emotional challenges, they spent more time de-scribing how these challenges affected their ability to partici-pate in such normal, everyday activities as bathing, dressing,preparing meals, and driving and to perform such householdtasks as cleaning and yard work. Nearly all participants in-cluded this type of challenge in their discussion. For exam-ple, one SS described how fatigue interfered with his abilityto care for his lawn, “I was much more energetic. I would do alot more like cutting the grass and weeding around the houseand now I can’t do that.” These types of difficulties were es-pecially troubling when they limited the SS’s daily independ-ence and necessitated dependence upon others, sometimescausing stress in relationships with family and friends.

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Relationship challenges. Relational challenges werealso common, with seven SSs and eight caregivers mention-ing this type of difficulty. The most frequent relationshipchallenge mentioned by SSs had to do with being an imposi-tion on family and friends. One SS and father remarked,“Maybe I want to go here and in the back of my mind, I think,‘I’m infringing on my daughter’s rights.’” Another agreed,“It’s hard to depend on other people to take you places. Be-cause, you know, they have things they have to do, and theyneed to get done, and you don’t want to interfere with theirschedule.”

Relationship challenges also include changes to previ-ously held roles. Being able to drive was particularly impor-tant to male SSs. “A man should be driving or picking up hiswife, taking her here, taking her there, and it’s hard when it’sthe wife that has to do that.” Parenting was a challenge forSSs with young children. One wife was concerned that herhusband was withdrawing from his children after his stroke,despite the fact that “he was probably the best father.” In ad-dition to the roles of husband and parent, SSs had to copewith new (and often diminished) vocational roles.

Employment challenges. The majority of these SSswere still employed at the time of the stroke onset. As men-tioned earlier, approximately 28% of SSs are under age 65,and increasing numbers of workers in American societywho are 65 and older are delaying retirement or reenteringthe workforce (Novelli, 2001). Employment challengeswere found in the transcripts of nine SSs and seven care-givers. As mentioned earlier, at the time of their strokes,eight of the SSs were employed, but after their strokes, sev-eral participants were fired, laid off, or had to change jobsdue to reduced physical capacity. Those who were fired orlet go were especially angry and struggled to restore theirsense of self.

Once you have a stroke, they won’t take you anymore.So he wants to do something … and when he can getout and do something, he feels, he does feel better. Ican see the difference in when he’s home, like, sevendays a week.

One SS coped with his anger at perceived employment dis-crimination through litigation (an avenue opened by passageof the Americans With Disabilities Act of 1990). In contrast,others turned toward the challenges of learning new skill setsand finding alternative employment.

Financial challenges. For many of our participants, fi-nances were a major source of concern. From basic needs tomedical expenses, eight caregivers and five SSs reported thatthey wished there were more available financial resources.Some depended on Medicare; others shared the challenges ofgetting their insurance companies to help meet their new fi-nancial needs. “We had no income for things like medical

bills—none. We had to eat. It was horrible. I mean we hadMedicare, but that was it.” Understandably, this challengewas especially problematic for those whose strokes compro-mised their employment.

Resources

SSs and their caregivers were very forthcoming when iden-tifying resources for the SS in reentering family, commu-nity, and vocational roles. Three categories of resourceswere identified from the transcripts: external formal re-sources, external informal resources, and internal resources.The most prominent of the external formal resources wassupport from professional health care providers and supportgroups. External informal resources included family mem-bers serving as caregivers, friends, and family; internal re-sources mentioned were patience, motivation, a positiveoutlook, and humor.

External formal resources. Formal resources wereprovided through “weak ties,” or people who were not mem-bers of the SS’s own personal, ongoing network. Specifically,in this study, these resources were identified as financial andtangible assistance provided by insurance companies andother agencies, as well as emotional support from health careproviders. Health care providers were typically the most cen-tral figure in terms of formal resources and included physi-cians, nurses, rehabilitation specialists, social workers, andany other professional with a role in the formal health caresystem.

Many favorable accounts involving health care profes-sionals highlighted the effective exchange of information asbeing central to their services, as nearly everyone inter-viewed identified at least one resource provided to them byhealth care professionals. One caregiver reported, “Actuallythe social workers who were at the hospital were very infor-mative, very helpful. Told me what I needed to do as far asgetting him on medication, and going to Social Security im-mediately.” Informational support was often mentioned as aninvaluable resource by both family caregivers and SSs. Thus,not only did professional health care providers offer informa-tion about the physical aspects of stroke, but they also pro-vided information about navigating through the maze of So-cial Security and insurance claims.

In addition to informational support, however, many par-ticipants described the emotional support they receivedthrough personal relationships with health care providers.For example, one SS stated, “They treat me like one of thefamily.” In her interview, his wife used words like “wonder-ful,” “caring,” and “personable” to describe the rehabilitationstaff and reported that her husband had a “special bond” withthem. Alternatively, other participants described an ad-versarial, yet effective, relationship with health care provid-ers, “Janet was his speech therapist, and it was like she washis nemesis. He just didn’t realize he needed it.” Another SS

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remarked that it was helpful when the hospital staff pushedher, “They get a little rough with you, but that’s what Ineeded.”

Once SSs were released from the hospital, the real work offamily and community integration commenced. More thanhalf the participants described how stroke support groupmembers offered helpful advice for managing everyday chal-lenges. Another aspect of support groups that was identifiedas crucial to community integration was the social outlet pro-vided. Support groups also helped SSs by providing encour-agement. “It has helped because I have really improved. Theytaught me to just take it one day at a time.” His wife agreedthat the social aspect was important, “They do a little dinnerand stuff like that. You get to talk to other people that have alot of similar problems.” Another caregiver relayed the valueof social comparison, “But since I go to these support groups,I can see what he does and what all these other ones do …The group is wonderful. They encourage everybody.”

The social aspect of the support groups seemed especiallyimportant, as one caregiver urged support group coordinatorsto allow the participants to enjoy each other, and not to “keepreminding them they had a stroke.” She argued that interact-ing with others who have shared the same experience simplybrings relief and comfort, “They’re comfortable with peoplewho have the same types of disabilities. Other than theirclose family, that’s the people they’re most comfortablewith.” For one SS who suffered a particularly debilitatingstroke, the role he played in the support group was in helpingothers.

Well, you find out there are people out there having thesame kinds of feelings and thoughts that you have.You’re able to share that with them and maybe helpthem understand where they’re at and their problemsand why they are the way they are.

In contrast, others resisted the idea of going to supportgroups, “They had those and they tried to get him to do thatbut he just doesn’t want to do it. He just wants to get better.He figures he will on his own.” Paradoxically, one SS pre-ferred to avoid support groups. “And to this day he hasn’tgone because he just didn’t want to remember what it waslike, ’cause the other people go through the same problems orworse.”

External informal resources. Also referred to as“close” or “strong” ties, family members and close friendsprovide valuable social support. As the central figure in theweb of informal resources, family members acting as care-givers navigate and adapt the everyday world for the SS. Notsurprisingly, caregivers were mentioned by SSs as being pri-mary sources of support, with 10 SSs and six caregivers in-cluding this theme in their interviews. Caregivers helped SSswith tasks such as managing medication, bathing, givingmassages, dressing, driving, preparing meals, obtaining ther-

apists and other services, and performing household tasks.Although the SSs and caregivers mentioned these tasks, theparticipants provided surprisingly little detail about the care-givers’ emotional support. The breadth of responsibilitiesmentioned, however, speaks to the magnitude of the task. Asone male SS put it, “You have to remember now that yourwife is going to be a caregiver. For the first year, she had to doalmost everything for me.”

As some SSs described a “love/hate” relationship withtheir formal health care providers, many survivors ofright-hemisphere stroke talked about their caregivers in asimilar manner. For example, one of the younger SSs de-scribed his caregiver as one who kept “driving” him, evenwhen he started to tire. He joked that “if my head nurse [hismother] wasn’t related to me, I would have fired her.”

Friends and other family members (e.g., children, sib-lings) were also central resources for recovering SSs. Friendsand family members were mentioned in nearly every inter-view as providing instrumental and emotional support.Friends and family members also filled in for the caregiver byperforming such instrumental tasks as taking the SS to ap-pointments, helping with rehabilitation, performing house-hold duties, or providing respite care to the SS when the pri-mary caregiver needed a break. Friends and family providedemotional support in the form of listening, to either the care-giver or the SS. Other SSs described the comfort of familymembers “being there” and “hovering” over them. “[Myfriends] came to see me right away. They came a lot. I didn’tknow I had so many friends. They helped me a lot mentally.”In many cases, SSs reported valuing the social support fromtheir friends and family members due in part to being encour-aged not to give up.

Internal resources. Many SSs and caregivers re-counted how the SSs’personal characteristics allowed the SSto meet the daily challenges of coping with stroke. Com-monly mentioned characteristics included patience, motiva-tion and determination, a positive attitude, and humor. Al-though these sorts of personality strengths were common inthis set of transcripts, many participants did not mention anyof these internal coping mechanisms.

Patience is a virtue that two SSs had to learn during theirrecovery. Whether it be learning how to mow the grass andshovel snow with one arm or thread one’s belt through thebelt loops in a pair of pants, once-familiar tasks became ma-jor feats that required innovative solutions.

I get my breakfast in the morning. Sometimes I have ahard time with cereal boxes, and so my wife will usu-ally do that ahead of time. Or opening a jar or some-thing, because I can’t hold it with my left hand. I havelearned how to do things different ways. I’ll hold it be-tween my legs. You learn different ways when youhave to.

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Thus, patience enabled many of the SSs to overcome theirphysical limitations.

In addition to patience, seven SSs and five caregivers de-scribed the motivation and determination of the SSs as beinginstrumental in their recovery. The determination of one SS isexemplified in his statement:

You don’t want to hear some of the things I would sayto myself. It was more of talking to myself about, “Youknew what you had before and you know what youhave to do now to get back to it or as close as you can.”… You have to give it 150%, not 100% because 100doesn’t work. You have to give more than you couldever think you could.

Examples of determination and motivation from other SSswere equally compelling; they demonstrated how courageand strength of character is needed to maintain a high level ofcommitment to recovery.

A positive attitude was a must for five survivors ofright-hemisphere stroke and two of the caregivers. One SSgave himself high marks in this category:

I think I do have a positive attitude. When you look atanything, there’s two sides to everything. You can ei-ther be negative, or you can be positive. The biggestthing I had to get over was, “Why me? Why did it hap-pen to me?”

For some, the positive attitude was contagious. During astroke support group meeting, a caregiver observed her hus-band trying to motivate another SS: “He said to another pa-tient, ‘why are you so upset? These people brought me back,why can’t you do it?’And the man straightened up, he wasn’tas nasty.”

Finally, humor can be beneficial; two SSs and one care-giver included this characteristic as an important internal re-source. One caregiver recounted:

He always says, “so what do you think?” I said, “hon,you don’t pay enough, you don’t even pay minimumwage, I’m not thinking any more.” He says, “well, Iguess I’ll have to handle that, too.” I say, “Yes, youwill.” So, we laugh.

Even when humor was not explicitly mentioned as a re-source, evidence of how humor helped SSs to cope with re-covery and reestablish their roles and relationships werefound.

He used to sneak one [cigarette] every once in awhilebefore the stroke, and he’d say, “Don’t tell your mom.”I told him, “well, you shouldn’t be doing that.” Afterthe stroke he went all cold turkey. Now when I go to the

store and ask him if he needs anything, he’ll say, “yeah,get me a cigar and a big steak.”

Relations Between Externaland Internal Resources

Many of the challenges and resources were interrelated. Forexample, physical challenges due to stroke were closely re-lated to challenges to activities of daily living. Loss of mobil-ity contributed to difficulties in dressing, bathing, and driv-ing. Inability to drive was often a reason why SSs were lessinvolved in such previously enjoyed activities as socialevents, hobbies, and employment. As one SS summarized,“Well, like I say, I used to be real active and involved inthings. Since then, it’s been real limited because of my meansof getting around.” The chain of interrelated challenges thuscontinued, as reduced physical ability contributed to emo-tional challenges, including frustration, anxiety, and socialisolation.

In the same manner, resources were also interrelated. Oneman who had a severe stroke talked about how communica-tion with his psychologist (an external formal resource) as-sisted him with emotional difficulties and helped him to be-come involved in his life again.

Being home here, after getting out of the hospital, wasmy safe zone. Eventually you have to face up to every-day life. [The psychologist] made me very aware ofthis and would suggest to take one step at a time and tryto do this with my children and become more activeand get back to who I was.

In this instance, a health care provider helped to facilitate thepatience and motivation of the SS in a way that encouragedhim to work toward restoring his relationships with his chil-dren.

The most noticeable connections, however, were betweenthe support provided by “strong tie” relationships (referred toin this study as external informal resources such as familycaregivers, other family members, and friends) and the SSs’own internal resources. As friends and family members com-municated emotional support to the SSs, the SSs reported be-coming more comfortable with the idea of new roles in theirfamilies and communities.

I think the biggest thing [my family] did was just let meknow that they still love me and still accepted me forbeing who I am. So, finally, it’s gotten to the point wehardly think I had a stroke.

In her independent interview, his caregiver relayed a verysimilar comment.

He never had a hesitation about going back to work inthat environment, but I think he still had that fear of not

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being accepted. Once he saw that, that people were notthinking less of him … that he could finally start ac-cepting, this is who I am, and the person I am now is theperson I was then.

In this case, the communication of acceptance through theemotional support of this SS’s family allowed the SS to havea positive attitude toward his abilities and new vocationalrole.

Communicating with other SSs for the purpose of helpingthem to cope with their strokes was a therapeutic activity thatstrengthened SSs and provided the motivation to work ontheir own recovery. For example, the support one SS pro-vided and received from other members was instrumental inhis adapting to his new liabilities,

Well, you find out there are other people out there hav-ing the same kinds of feelings and thoughts that youhave. You’re able to share that with them and maybehelp them understand where they’re at and their prob-lems and why they are the way they are. You can’tchange somebody, but you can be the change you wantto see in somebody else.

Although he did not have much use of his left arm, this partic-ular SS perceived his role in the support group as more of asupport provider than recipient. This opportunity to be a sup-port provider gave the SS a sense of altruism, an internal re-source that compelled him to continue to attend the supportgroup meetings.

DISCUSSION

Both SSs and caregivers reported a range of challenges andresources related to their experiences following the onset of aright-hemisphere stroke. Challenges included physical diffi-culties such as pain, fatigue, and loss of mobility; cogni-tive–perceptual challenges related to experiences such asconfusion and loss of short-term memory; and emotionalchallenges such as anger, frustration, depression, and in-creased emotionality. Additional challenges included diffi-culties with daily activities such as dressing and bathing; anddisruptions to SSs’ finances, employment, and relationships.Reported resources were found in the form of external, for-mal resources such as health care providers and supportgroups. External informal resources consisted mostly ofcaregivers, family, and friends, while internal resourcesnamed by participants included personal characteristics likepatience, motivation/determination, a positive attitude, and asense of humor. Interrelationships between types of chal-lenges were found, along with important relationships be-tween external informal resources such as support from fam-ily and friends and internal resources such as motivation,patience, and humor.

The goal of this article was to examine the role of the com-munication of social support in the community integration ofright-hemisphere SSs. A limitation of this project is its smallsample size (25 participants, but over 300 pages of narrative).Also, many respondents were recruited from stroke supportgroups, and they may be better at locating and utilizing com-munity resources than others who are more isolated and lesshigh-functioning. In addition, some respondents may haveprovided an overly optimistic picture of their experiences andcurrent situation to avoid criticizing their caregivers, family,friends, or health care providers. Finally, although the au-thors’ individual experiences and perspectives may influencethe conclusions drawn from these data, every effort wasmade to enhance face validity through use of multiplesources of data and member checks. Recognizing these limi-tations, the following section inductively ties these reportstogether with an existing model of social support resources toenhance our understanding of the role of communication insocial support.

Social Support, Community Integration,and Conservation of Resources Theory

Based on the experiences relayed by these survivors ofright-hemisphere stroke, we concluded that the degree ofcommunity integration is less dependent on the level of dis-ability and is more a function of the ability of the SS to utilizeinternal resources (e.g., motivation, a positive attitude) in themobilization of needed external resources (e.g. social sup-port from friends and family, formal resources such as sup-port groups and assistive devices). Some SSs, despite highlevels of impairment, were able to better resume their em-ployment, leisure, and relational roles as compared with oth-ers who had less physical impairment. What seemed tobridge the gap for the more well-adjusted SSs was the qualityof their internal resources, developed as a function of com-munication from caregivers, friends, and family members.

Hobfoll’s (1988, 1989) conservation of resources theoryintegrates the concepts of resources and social support in away similar to the results of this study. Although a significantamount of space could be used to describe this theory fully,the major premise of Hobfoll’s theory is that people endeavorto maintain their personal and social resources in the face ofstressful circumstances. Resources are defined as anythingthat is valued by its possessor (objects such as transportationor property, conditions such as healthy relationships or se-niority in the workplace, personal characteristics likeself-esteem or a sense of humor, and energies such as moneyor insurance; Hobfoll & Lilly, 1993). Similar to the conclu-sions based on the data of this study, Hobfoll, Freedy, Lane,and Geller (1990) recognized the interrelatedness of personaland social resources:

When challenges supersede personal resource reserves,[those high in personal resources] are also more likely to pos-

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sess social resources and to have the ability to use these re-sources effectively. This stems from the fact that the samepersonal resources are related to abilities to create and sus-tain close ties and to manage crises (p. 470).

Hobfoll et al. (1990) centralized the social support pro-cess as the “major vehicle by which individuals’ resourcesare widened outside the limited domain of resources that arecontained in the self” (p. 467). Under high stress, individualresources are more closely tied to social resources as individ-uals assess their self-efficacy in changing contexts (Hobfollet al., 1990). Thus, social resources (e.g., external informalresources such as caregivers) that can bolster individuals’perceptions of personal resources through communicationserve a dual function: they increase estimates of perceivedsocial support in their responsiveness (a social resource), aswell as estimates of perceived personal resources for the SS.Communication can serve as the conduit through which so-cial resources become personal resources and vice-versa.

Perceived social support has been correlated with such in-ternal characteristics as lower levels of anxiety, a more posi-tive self-image, positive expectations about interacting withothers, and a general sense of self-efficacy that can lead tomore adaptive behaviors (Sarason, Pierce, & Sarason, 1994).Research has also found communication competence to bepositively related to perceived social support (Query &James, 1989; Query & Wright, 2003). Thus, according toprevious studies, perceptions of higher levels of social sup-port (or available social resources), appear to be related toseveral personal characteristics relevant to communicationresearch. Although the actual links between communicationand perceptions of social support have not all been tested em-pirically, the results of this study, as cast through conserva-tion of resources theory, provide direction for more focusedinvestigations. For example, in this study, SSs who reportedthese types of internal resources also benefited from other in-formal resources such as help provided by family andfriends. Network analyses could be performed to comparenetwork size, density, and communication patterns amongindividuals varying in their levels of self-efficacy or commu-nication competence. In addition, experimental and diarystudies might capture the discourse employed by thehigher-functioning communicators to understand better howsocial support is enacted in conversation.

Although there exist a multitude of possible studies thatcould be born of this approach with regard to community in-tegration and from a communication perspective, we wouldlike to highlight the importance of studying how informal ex-ternal resources (close ties) such as the social support offriends and family aid in the development of the SS’s internalresources. Several of the SSs and caregivers in the currentstudy remarked how important it was that they felt a sense ofbelonging and acceptance despite the fact that their physicalcapabilities may have changed due to their strokes. Althoughformal resources, such as those provided by health care pro-

fessionals and rehabilitation programs, are essential to help-ing a SS deal with a physical impairment, communicating tothe SS that he or she is still loved and valued as a father,mother, coworker, and so forth, is equally important, if notmore valuable, to the regaining of previously held roles.

This function of the informal networks of SSs is in concertwith Albrecht and Adelman’s (1984) conception of socialsupport as uncertainty-reducing. They argued that social sup-port groups, for example, are helpful because they reduce un-certainty and increase perceived similarity to others, thusbinding the members together. In addition, social networkscan serve to reduce an individual’s level of uncertainty atboth the community and family level. The uncertainties mostclosely related to community integration relate to a SS’s abil-ity to regain a role in the marriage, family, work environment,and community. Although health care professionals andother formal sources of social support can reduce some un-certainty related to physical functioning, the uncertainty re-lated to a SS’s emotional, relational, and financial challengesare also urgent concerns.

These sorts of challenges affect many areas of the SS’slife, which is perhaps why close friends and family memberswho know the SS well, are better prepared to address them.Sarason, Pierce, and Sarason (1990) described the concept of“belongingness” as leading “an individual to develop a senseof acceptance that reflects the extent to which the individualbelieves that he or she is loved, valued, and accepted by sig-nificant others” (p. 119). The uncertainty of being valued andaccepted by one’s friends, family, and coworkers is an uncer-tainty best addressed by those who can provide the necessaryreassurance regarding relationships and previously heldroles. As the support recipient becomes more certain of his orher place within these vital networks, the development of in-ternal resources like patience and a positive attitude is en-hanced.

Implications

The conservation of resources theory is a useful theoreticaltool, as it conceptualizes social support in a way that empha-sizes the systemic and dynamic interaction between internaland external resources that are needed by survivors ofright-hemisphere stroke. For example, a SS lacking the inter-nal resource of determination may also lack determination inmaintaining a large network of potentially supportive rela-tionships. Thus, this deficit in personal resources can result indeficient social resources. Conversely, a support providerwho is able to communicate to a SS his or her success inmaintaining relationships may be able to also convey how theSS will be able to persevere in the process of community inte-gration. An improvement made in one category is likely to af-fect the status of another. The implication of this finding forresearchers and health care providers is that interventionsmay be designed that focus on personal, communication-re-lated attributes and relationship building to improve the like-

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lihood of community integration. For example, instead of fo-cusing solely on the SSs’ physical functioning, interventionscould be implemented to better equip caregivers in commu-nicating acceptance and a sense of belonging to SSs to in-crease their positive outlook and determination. In any case,the internal resources of the SS are paramount, for if these arehigh, the SS is better suited to be a self-advocate to garner ad-ditional external resources if they are lacking.

Future research can uncover the best ways to mobilizethese various types of support through clinical and commu-nity programs that keep the patient central to the process ofcommunity integration. According to these results, and as in-dicated by extant research and the conservation of resourcestheory, to impact this situation in a meaningful way, research-ers and practitioners need to identify ways to assess a SS’s re-sources and identify strategies to activate the necessary sup-port. In particular, identifying key internal resources, such ascommunication competence, can aid in developing more tar-geted interventions that can compensate for both personaland social resource deficits.

ACKNOWLEDGMENTS

This research was supported by funds provided by Kent StateUniversity’s University Research Council. The authors thankMs. Jan Bahl, Mr. Greg Knapik, Dr. Denise Polk, and Dr.Robert Pierce for their assistance with this project.

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