Needs of Family Caregivers Caring for Stroke Patients

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Needs of Family CaregiversCaring for Stroke PatientsJae Won Kim MSW a & Sung Seek Moon PhD aa University of Texas , Arlington, TX, USAPublished online: 08 Oct 2008.

To cite this article: Jae Won Kim MSW & Sung Seek Moon PhD (2007) Needs of FamilyCaregivers Caring for Stroke Patients, Social Work in Health Care, 45:1, 81-97, DOI:10.1300/J010v45n01_06

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Needs of Family CaregiversCaring for Stroke Patients:

Based on the Rehabilitation TreatmentPhase and the Treatment Setting

Jae Won Kim, MSWSung Seek Moon, PhD

ABSTRACT. The objective of the study was to identify the needs offamily members across rehabilitation treatment phases and treatmentsettings. Participants were 123 family caregivers in rehabilitation set-tings in South Korea that replied to the survey. The needs were measuredby the Family Needs Questionnaire (FNQ) and the t-test and one-wayANOVA were used to analyze collected data. In the comparison of tworehabilitation phases, the family caregivers caring for their patients inthe acute rehabilitation phase perceived the need for health informationas more important than those in the postacute phase. In addition, thefamily caregivers caring for patients in the acute rehabilitation phase wereless satisfied with community network support and family support thanthose in the postacute phase. In the comparison of treatment settings, familycaregivers caring for their patients in outpatient clinic services showed thelowest satisfaction of their needs in four areas (health information, emo-tional support, instrumental support, and professional support) comparedwith those in inpatient facilities or day hospitals. Findings are discussed

Jae Won Kim and Sung Seek Moon are affiliated with The University of Texas atArlington, TX.

Address correspondence to: Sung Seek Moon, School of Social Work, Suite 208B,University of Texas at Arlington, 211 South Cooper Street, Arlington, TX 76019(E-mail: [email protected]).

Social Work in Health Care, Vol. 45(1) 2007Available online at http://swhc.haworthpress.com

© 2007 by The Haworth Press, Inc. All rights reserved.doi:10.1300/J010v45n01_06 81

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within the context of the empirical and theoretical literature and implica-tions for social work practice are considered. doi:10.1300/J010v45n01_06[Article copies available for a fee from The Haworth Document Delivery Ser-vice: 1-800-HAWORTH. E-mail address: <[email protected]>Website: <http://www.HaworthPress.com> © 2007 by The Haworth Press, Inc.All rights reserved.]

KEYWORDS. Family caregiver, stroke patients, rehabilitation, braininjury

According to the Survey of People Living with Disabilities in 2000(Bu et al., 2001), it is estimated that 200,000 people in South Koreahave disabilities due to stroke and other brain injuries. Stroke and braininjuries comprise about 14% of people with disabilities and are the sec-ond leading cause of disability in South Korea. The Survey of PeopleLiving with Disabilities (Bu et al., 2001) also showed that 90% of therespondents who have a disability due to a stroke or other brain injuryexpressed that they need physical help from someone, and 95% repliedthat they have received physical assistance from their family members.This implies that many family members of stroke patients in SouthKorea have provided caregiving for their patients.

Stroke brings about a crisis in family systems as well as in patientsthemselves due to its sudden onsets. Stroke results in physical and cogni-tive impairments, communication deficit, and depression for the patient.As a result, the stroke patient often needs family support. This also causesanxiety, loss of freedom, financial burdens, and social isolation for thefamily (Ozer, Materson, & Caplan, 1994). Some research indicates thatthe family is the primary factor in determining the effects of the rehabil-itation treatment. (Rusin, 1990). Other research indicates familial supportthat influences the rehabilitative effectiveness of the patient’s functionaldisabilities (Evans & Norwood, 1983). Anderson (1995) indicated thatfamily caregivers try to overcome the negative impacts by changing theirlife priorities and their life patterns. However, if the extent of the impactis large, the family support system for the patient may collapse. There-fore, Anderson insists that it is imperative to involve family caregiversin the rehabilitation processes.

Some researchers in South Korea reported the burdens, stresses, anddepression among family caregivers (Kim et al., 2000; Park & Park,2001; Roh, 2000; Yoon, Cha, & Cho, 2000), but there is no research that

82 SOCIAL WORK IN HEALTH CARE

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focuses on various aspects of unmet needs of family caregivers in orderto develop an intervention program.

It is important for social work practitioners who work in the rehabili-tation setting to focus on various needs of the family caregivers as wellas the stroke patient in order to develop social work intervention pro-grams. This is especially true in settings where social workers intervenewith patients and families, such as acute rehabilitation units, outpatientprograms, and day hospitals.

In the United States, there have been several research studies identi-fying the needs of family caregivers of stroke patients by nursing pro-fessionals (Bakas et al., 2002; McLean et al., 1991; Rosenthal et al.,1993). These studies have similar findings regarding the needs of thecaregiver, but there were no comparisons among their needs acrosstreatment phases and treatment settings; most research about strokecaregivers has not assessed the changes of the familial needs accordingto the treatment phase or treatment setting. There have been some em-pirical implications that the family needs may change over time (Brookset al., 1986; Kreutzer, Serio, & Bergquist, 1994; Stebbins & Leung,1998).

In this study, the needs of family caregivers caring for stroke patientswill be assessed by the Family Needs Questionnaire (FNQ). The needswill be compared with two consecutive phases and among three differ-ent treatment settings. The role of the medical social worker who worksin these rehabilitation settings to meet the family caregivers’ unmetneeds will also be discussed.

LITERATURE REVIEW

Treatment Phases in Stroke

The cause of stroke or cerebral vascular accident (CVA) is infarction(ischemic stroke) or hemorrhage of one or more blood vessels in thebrain (Charness & Schneider, 1986). Individuals who have sufferedfrom a stroke have physical, cognitive, and emotional impairments suchas hemiplegia, memory loss, speech problems, and vision problems.Most of them become permanently disabled due to these impairments(American Stroke Association, n.d.; Jeon, 1997).

Literature defines the process of treatment for stroke as being 3 to 4phases (Table 1; Jeon, 1997; Ozer et al., 1994). In the acute phase, the

Jae Won Kim and Sung Seek Moon 83

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patient gets medical and neurological stability after treatment in an in-tensive care unit. Only if medical and neurologic stability are estab-lished can the patient then receive acute rehabilitation treatment in aninpatient setting (Jeon, 1997). The acute rehabilitation program providesinterdisciplinary treatments from neurophysiologists, clinical psycholo-gists, case managers, occupational therapists, physical therapists, speech-language pathologists, therapeutic recreation specialists, audiologists,pharmacists, dieticians, rehabilitation nurses, orthotists, vocational coun-selors, and respiratory therapists (Bontke & Boake, 1991). Jeon (1997)indicated that the required essential factors for acute rehabilitation treat-ment are the patient’s physical potentiality for improvement, patient’smotivation, and patient’s physical endurance for therapies.

In the postacute rehabilitation phase, patients cannot directly getback to work or resume the previous responsibility of their life. The goalof treatment in this phase is to help the patient prepare for successfullyreturning to the community or work and maintain their current function-ing (Jeon, 1997). This means transition from an inpatient rehabilitationprogram to other possible programs.

An Alternative to Outpatient Care:The Geriatric Day Hospital

The geriatric day hospital for geriatric patients including stroke pa-tients began in England in the 1950s. Its purpose is to prevent readmis-sion and maintain the functional status of elderly people, providingdiverse medical services and rehabilitation treatments (Siu et al., 1994).Most research has focused on efficiency and cost-effectiveness of geri-atric day hospitals as an alternative treatment. There were no significantresults of efficiency and cost-effectiveness, and there was not signifi-cant improvement of functional status of the patients comparing inpa-


TABLE 1. Treatment Phases in Strokes

Phase Setting Goal

Acute Intensive Care Unit To determine impairment

Acute Rehabilitation Inpatient To determine disabilities

Post-Acute Rehabilitation Outpatient To determine need for professional care

Day hospital

Nursing home

Note. Adapted from Jeon, 1997; Ozer, Materson & Caplan, 1994.

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tient and outpatient care (Eagle et al., 1991; Siu et al., 1994). However,Zeeli and Isaacs (1988) found that one-third of patients felt that they hadimproved and one-third of caregivers experienced relief of strain.

In South Korea, currently only two rehabilitation hospitals provideday services for stroke and brain-injured patients as an alternative tooutpatient care. For example, the day hospital for stroke and brain-in-jured patients in the National Rehabilitation Medical Center providesday hospital services five days a week. The interdisciplinary treatmentsin this service include rehabilitation medicine, physical therapy, occu-pational therapy, speech therapy, nursing, and social service. In addition,the day hospital offers recreational activities including playing music,painting, watching movies, and cooking. The day hospital also offerspsychosocial services, such as individual counseling, group counseling,therapeutic recreation, and music therapy. The hospital also provides edu-cational programs with the family caregivers, such as prevention of com-plications and recurrence of stroke with the family caregivers. Becausethe family caregivers are able to utilize the time, their patients are in daytreatment; some of them participate in informal self-help group activities.These features of the day hospital are very different from outpatient ser-vices, which only provide 1- or 2-hour programs, including physical ther-apy, occupational therapy, and speech therapy (if applicable) for strokepatients twice a week, and do not provide any other programs for thecaregivers.

Until now, there has not been any research about efficiency, cost-ef-fectiveness, or impact on patients and their family caregivers in dayhospital settings in South Korea. Thus, this study will compare theneeds of family caregivers in day hospital settings with inpatient andoutpatient settings.

The Needs of Caregivers

Several studies showed that a family’s support can be a primary in-fluential factor on the effectiveness of stroke patients’ functional im-provements (Evans & Norwood, 1983; Rusin, 1990). In the researchabout the family caregivers’ burden, Anderson (1995) pointed out thatthe burden of stroke not only impacts stroke patients, but also disruptsfamily integrity and the quality of life for family caregivers. Andersoninsisted that caregivers should receive medical, social, and emotionalsupport for their own needs as well as obtaining stroke-related informa-tion in the routine follow-up activities.


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There have been several studies that identified the needs of the familycaregivers. Mauss-Clum and Ryan (1980) found information about theneeds of family caregivers for patients with neurological disabilities.The samples were the caregivers’ caring for the patients with stroke,traumatic brain injury, and dementia in acute phase. As a result of thestudy, the needs of the caregivers should be shown in this order:(1) Kind and clear explanations, (2) discussion of realistic expectations,(3) emotional support, (4) financial counseling, and (5) resources coun-seling. This study is meaningful in that it found out various needs of thefamilies. It showed that families expressed more of a need for a medicalexplanation than other needs in the acute phases. There are limitationsin that the study had small samples (N = 30) and no comparison groupresults were provided (Serio, Kreutzer, & Witol, 1997).

Rosenthal et al. (1993) also showed the results of a study regardingthe needs of wives with husbands who were stroke patients in acutephases. The researcher developed the stroke family inventory (SFI)scale for assessing the needs of the caregiver. Among a total of 27 ques-tions, 5 items, such as “to know what I can do to help with my husband’scare,” “to be included in discharge planning,” “to feel that the nursingpersonnel care about my husband,” and “to know what kind of activitiesmy husband is/will be able to do,” showed the highest mean scores.However, the items asking about the caregivers’ own needs, such as “tohave an opportunity to discuss my feelings,” “to talk about my negativefeelings, such as guilty and anger,” “to have someone be concerned withmy health status,” “to have staff members be aware of me as an individ-ual,” ranked lower than any other questions. As a result, this study con-cluded that the caregivers of stroke patients in acute phase were moreconcerned about the patient’s medical care rather than their own healthand emotional needs. This study, however, has limitations; they had asmall sample (N = 14) and failed to show reliability of the instruments,and did not show any demographic characteristics of the patients andtheir caregivers.

In a pilot study to find service needs of stroke patients and their infor-mal caregivers, McLean et al. (1991) categorized the needs of familycaregivers as falling into six areas: (1) Physical care, (2) affective needs,(3) physical health, (4) respite needs, (5) health education, and (6) hos-pital aftercare. The study samples were families of stroke patients whowere discharged from the hospital and received day hospital services(postacute rehabilitation phase). This study is helpful in that it providedfindings concerning family caregivers in the postacute rehabilitation


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phase. This study showed that caregivers’ needs were more various thanin the early phases.

Bakas et al. (2002) reported various self-reported needs, concerns,strategies, and advice of the family caregivers of stroke patients withinthe first 6 months after hospital discharge (postactute rehabilitationphase). The needs were categorized into five areas: (1) Information,(2) emotions and behaviors, (3) physical care, (4) instrumental care, and(5) personal responses. The needs of emotional support and managingbehavioral problems of the patients were most frequently expressedamong caregivers. The findings implied that family caregivers in thepostacute rehabilitation expressed their unmet needs well, in contrastwith those in earlier phases in the stroke rehabilitation.

METHOD

Participants

The participants consisted of family caregivers who take care ofstroke patients in inpatient treatment units, outpatient service clinics infour hospitals in urban areas: Seoul, Kyunggi, and Choongnam in SouthKorea and in day hospital settings in two hospitals in Seoul, Kyunggi.These hospitals were selected purposively rather than randomly. How-ever, family caregiver respondents of this study can be representativesof caregivers in South Korea who take care of their patients in the dayhospital setting because there are only two day hospitals for the strokepatient in South Korea. The surveys were distributed in person or bymail to 250 caregivers, and 136 caregivers responded. Thirteen of thereturned surveys (9.6%) were incomplete, so we discarded. Therefore,the final sample for this study was 123.

Measurement

In order to assess the needs of family caregivers caring for stroke pa-tients, the FNQ was used (Serio et al., 1997). Serio et al. devised theFNQ based on the following information: (1) The literature dealingwith family’s reaction to brain injuries, stroke, and other disabilities;(2) questionnaires from other references; and (3) needs frequently ex-pressed by caregivers during interviews. The original questionnaireconsists of 40 items, and has two ways of rating from each item: the im-portance of the need (1 = Not important, 2 = Little important, 3 = Quite


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important, or 4 = Very important: four-point Likert scale) and the sa-tisfaction of the need (3 = Yes, 2 = Partly or 1 = No: three-point ordinalscale). In this factor analytic study, Serio et al. retained 37 items thathad 0.50 or greater as a factor value, and the retained questionnaire itemswere categorized by six subscales: (1) Health information, (2) emotionalsupport, (3) instrumental support, (4) professional support, (5) commu-nity support network, and (6) involvement of patient care. Internal con-sistency coefficients of each subscale ranged from 0.78 to 0.89 (Serioet al., 1997). In this study, those 37 items were translated into Korean, anda total of 34 items which had 0.40 or greater as a factor value were adaptedto the survey after factor analysis (Varimax rotation method). In addition,the needs were recategorized by six new subscales: (1) Health information,(2) emotional support, (3) instrumental support, (4) professional support,(5) community support network, and (6) familial support. Table 2 showsthe sample items included in each of the six subscales. Through the reli-ability analysis, the revised FNQ showed high internal consistency(Cronbach alpha = 0.88); internal consistency coefficients of each subscaleranged from 0.65 to 0.76.

Data Analysis

This study used frequency analysis to identify the demographic in-formation of patients and caregivers. The independent t-test was used


TABLE 2. Sample Items in Each Scale

Subscale Sample items

Health information • Information about patient’s physical problems• Information about rehabilitation progress• Clear explanation about medical issues

Emotional support • Have negative feelings validated• Getting over doubts and fears• Help maintaining hope

Instrumental support • Get a break from responsibilities• Get enough rest/sleep• Pay attention to own needs and interests

Professional support • Professional advice/service is available• Trained in managing inappropriate behaviors• Enough resources for patient

Community support network • Discuss feelings with family/friends• Friends understand patient’s problem• Discuss feelings with other caregivers

Familial support • Help keeping the house• Family understands patient’s problem• Family members can help care for patient

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for comparing the needs of caregivers between two rehabilitation treat-ment phases: acute and postacute phases, and one-way ANOVA wasused for determining differences in the needs of caregivers among threetreatment settings: inpatient, outpatient, and day hospital settings. Tworespondents who answered “others” on the question about the treatmentsetting of their patients were excluded in the one-way ANOVA analysis.

RESULTS

Demographic Information of Patients

The majority of patients were male (61.8%), and 69.9% were overage 50. The majority had an educational level of high school or less(66.7%), and 82.9% of patients were married persons. Twenty-six pa-tients (20.3%) needed total assistance all the time, and 44.7% (n = 55) ofthe patients needed help often. Seventy patients (56.9%) received inpa-tient treatment, 36 patients (29.3%) received outpatient treatment, and17 patients (13.8%) received geriatric day hospital treatment (Table 3).

Most family caregivers replied that they were the spouse of the pa-tient (54.4%), and 42 caregivers (34.1%) were adult children. The ma-jority of respondents (61.0%) were female caregivers, and 48.8% of thecaregivers were in the age range of 40 to 60 (Table 4). Seventy-three(57.7%) of the caregivers had an education in high school or less and41.5% (n = 51) of caregivers had an education on the undergraduatelevel or higher. Fifty-six (45.5%) among the respondents had been re-tired or had no job. Ninety (73.2%) of the caregivers were married per-sons, and 22.8% (n = 28) of them were single. A total of 47.2% (n = 58)of caregivers responded that they had to provide caregiving for over 18hours a day, and 14.6% (n = 18) replied they had to take care of the pa-tients from 12 to 18 hours a day. 38.2% (n = 47) of the caregivers an-swered that they cared for their patients for under 12 hours.

The Perceived Importance of Needs and Satisfactionof Needs on the Basis of Rehabilitation Treatment Phase

In the independent t-test, the mean scores of importance for eachsubscale were compared between two rehabilitation phases (Table 5):the acute rehabilitation treatment (group 1) and the postacute rehabilita-tion phase (group 2). There were no significant differences between the


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two groups in emotional information (t(114) = �0.78), instrumental in-formation (t(114) = �1.09), professional information (t(117) = 0.70), com-munity network support (t(117) = 0.14) and familial support (t(118) =0.09). However, family caregivers in group 1 perceived the health infor-mation (M = 3.80) to be more important than those in group 2 (M =3.63), and the result was statistically significant (t(78.3) = 2.75, p < 0.01).The results imply that the family caregivers of stroke patients in theacute rehabilitation phase pay more attention to the health-related issues


TABLE 3. Patient Characteristic

Characteristic N %

Gender

Male 76 61.8

Female 47 38.2

Age M (SD) = 61.4 (1.28)

20-29 5 4.1

30-40 8 6.5

40-50 23 18.7

50-60 30 24.4

60-70 41 33.3

� 70 15 12.2

No response 1 0.8

Education level

High school or less 82 66.7

Undergraduate or higher 41 33.3

Marital status

Married 102 82.9

Not married 7 5.7

Divorced or separated 3 2.2

Widowed 9 7.3

Remarried 2 1.6

Functional status

Do not need assist 3 2.4

Need assist sometimes 39 31.7

Need assist often 55 44.7

Need total assistance all the time 26 20.3

No response 1 0.8

Type of treatment

Inpatient treatment 70 56.9

Outpatient treatment 36 29.3

Day hospital treatment 17 13.8

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TABLE 4. Caregiver Characteristic

Characteristic N %

RelationshipSpouse 66 54.4Adult children 42 34.1Sibling 3 2.4Relative 4 3.3Parent 6 4.9Other 2 1.6

GenderMale 48 39.0Female 75 61.0

Age� 20 2 1.620-29 19 15.430-40 19 15.440-50 30 24.450-60 30 24.460-70 19 15.4� 70 3 2.4No response 1 0.8

Education levelHigh school or less 73 57.7Undergraduate or higher 51 41.5No response 1 0.8

OccupationNone or retired 56 45.5Professional 21 17.1Administrative 10 8.1Commercial and service 17 13.8Agricultural or Labor 7 5.7Other 9 7.3No response 3 2.4

Marital statusMarried 90 73.2Not married 28 22.8Widowed 3 2.4Remarried 2 1.6

Total caregiving hours per day� 6 32 26.06-12 15 12.212-18 18 14.6

� 18 58 47.2Number of alternative caregivers

0 11 8.91 33 26.82 36 29.33 21 17.14 9 7.3� 5 11 8.9No response 2 1.6

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about their patients than those whose patients are in the postacute reha-bilitation phase. In the independent t-test, which compared mean scoresof satisfaction for each subscale between two groups, there was no sig-nificant difference in health information (t(96.7) = �0.34), emotionalsupport (t(96.6) = �0.43), instrumental support (t(101.9) = �0.04), andprofessional support (t(89.8) = 0.56). However, there were significant dif-ferences between the two groups in community network support (t(104.2) =�0 2.68, p < 0.01) and familial support (t(99.4) = �0 2.23, p < 0.05).

This result implies that the caregivers in group 1 have difficulty dis-cussing their feelings with their friends, relatives, or other caregiversbecause of their special situation in which they have to care for the hos-pitalized patient. It can be said that they also expect assistance in theirhousehold chores or participation from the other family members incaregiving activities. It can also be said that the acute situation of the pa-tient and the caregivers’ new role keep the caregiver from communicat-ing with other people and make them feel the need for more supportfrom their community and family members as opposed to those caringfor their patients who have already gone through the intensive treatment.


TABLE 5. The Needs of Caregivers on the Basis of Rehabilitation TreatmentPhase

Scale Group 1 Group 2

Acute Rehabilitation(n = 70)

Post-Acute Rehabilitation( n = 53)

M SD M SD t

Importance of the needs

Health information 3.80 0.24 3.63 0.38 2.75**

Emotional information 3.31 0.46 3.38 0.39 �0.78

Instrumental information 3.05 0.55 3.16 0.52 �1.09

Professional information 3.57 0.43 3.51 0.35 0.70

Community network support 3.24 0.55 3.10 0.44 1.49

Familial support 3.40 0.36 3.39 0.43 0.09

Satisfaction of the needs

Health information 2.04 0.43 2.06 0.44 �0.31

Emotional information 2.01 0.39 2.04 0.41 � 0.43

Instrumental information 1.81 0.48 1.81 0.46 �0.36

Professional information 1.87 0.36 1.84 0.43 0.46

Community network support 1.90 0.44 2.11 0.37 �2.68**

Familial support 1.95 0.38 2.12 0.40 �2.23*

*p < .05. **p < .01.

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The Perceived Importance of Needs and Satisfactionof Needs on the Basis of Rehabilitation Treatment Setting

In the one-way ANOVA, mean scores of perceived importance foreach subscale among family caregivers in three different groups werecompared. The group consisted of inpatient facilities (group A), outpa-tient clinic services (group B), and a geriatric day hospital (group C).There were no significant differences in emotional support (F(2,114) =0.79), instrumental support (F(2,113) = 0.73), professional support (F(2,116) =1.70), community network support (F(2,116) = 1.17), and familial sup-port (F(2,117) = 0.60) (Table 6). However, there were significant differ-ences in health information (F(2,115) = 6.20, p < 0.01); family caregiversin group A significantly perceived the needs of health information tobe more important (M = 3.80) than those whose patients were receiv-ing outpatient clinic services (M = 3.69) or services at a day hospital(M = 3.51).

When comparing mean scores of satisfaction about each need amongfamily caregivers in group A, B, and C, there were significant differ-ences of all the areas (Table 6). Among the three groups, the familycaregivers in group C were most satisfied with all six areas: health infor-


TABLE 6. The Needs of Caregivers on the Basis of Rehabilitation TreatmentPhase

Scale Group A Group B Group C

Inpatient (n = 70) Outpatient (n = 36) Day hospital (n = 17)

M (SD) M (SD) M (SD) F

Importance of the needs

Health information 3.80 (0.24) 3.69 (0.28) 3.51 (0.51) 6.20**

Emotional information 3.31 (0.46) 3.42 (0.31) 3.29 (0.51) 0.79

Instrumental information 3.05 (0.55) 3.13 (0.55) 3.22 (0.46) 0.73

Professional information 3.57 (0.43) 3.58 (0.32) 3.37 (0.38) 1.70

Community network support 3.24 (0.55) 3.13 (0.43) 3.05 (0.43) 1.17

Familial support 3.40 (0.36) 3.38 (0.46) 3.42 (0.35) 0.60

Satisfaction of the needs

Health information 2.04 (0.42) 1.92 (0.43) 2.33 (0.32) 5.14**

Emotional information 2.01 (0.39) 1.92 (0.34) 2.29 (0.43) 4.89**

Instrumental information 1.81 (0.48) 1.64 (0.44) 2.18 (0.17) 7.63**

Professional information 1.87 (0.36) 1.69 (0.42) 2.16 (0.24) 8.31***

Community network support 1.90 (0.43) 2.03 (0.35) 2.25 (0.35) 4.97**

Familial support 1.95 (0.38) 2.01 (0.37) 2.34 (0.34) 6.96***

*p < .05. **p < .01. ***p < .001.

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mation (M = 2.33), emotional support (M = 2.29), instrumental support(M = 2.18), professional support (M = 2.16), community support net-work (M = 2.25), and familial support (M = 2.34). The family caregiversin group B were least satisfied with health information (M = 1.92), emo-tional support (M = 1.92), instrumental support (M = 1.64), and profes-sional support (M = 1.69). Among the three groups, those in group Awere least satisfied with community network support (M = 1.90) and fa-milial support (M = 1.95).

DISCUSSION AND SOCIAL WORK IMPLICATIONS

Recent studies of caregivers’ needs have focused on identifyingchanges over time, based on treatment phases and different treatmentsettings, such as inpatient, outpatient, and day hospital. This investiga-tion extended from follow-up, exploring family needs to postacutetreatment phase with different treatment settings considered. The keyfinding of this study indicates that caregivers’ needs are different ac-cording to treatment phases and settings. During the acute rehabilitationphase, the caregivers pay more attention to the recovery of their patientsthan do those whose patients are in the postacute phase. In addition, thestudy shows that there is a significant difference between the two groupsin community network support and familial support. This finding issimilar to the findings of previous studies (Rosenthal et al., 1993;McLean et al., 1991; Bakas et al., 2002). Providing family caregiversappropriate health information and needed programs and services ac-cording to different treatment phases and settings seem to be valuedgoals in the social work profession.

As a coordinator of an interdisciplinary team in a rehabilitation unit,the social worker should be aware that it is important to continue the ed-ucation about health information for family caregivers, whose patientsare in the acute rehabilitation phase. The personal explanation from theinterdisciplinary team about the unique situation of the patient andgroup education can be ways to enable the caregiver to know about thehealth situation of the patient and feel competent in the caregiving role.Additionally, social workers are required to develop programs to dealwith unmet needs in the areas of community network and familial sup-port for those caring for their patients in the acute rehabilitation phase.The support for creating a self-help group for family caregivers can fa-cilitate family caregivers to share their feelings and information witheach other in the acute rehabilitation phase. Additionally, when provid-


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ing intervention with caregivers, social work professionals need toidentify limitations of support or conflicts within the family during theongoing assessment and mediate their family problems.

After being discharged from the inpatient rehabilitation setting, strokepatients and their families have to adapt to a new situation; the patientmay remain a dependent person and perhaps receive therapies from apostacute rehabilitation setting, such as an outpatient clinic service or aday hospital program. As a result of the analysis in this study, the care-givers, whose patients receive outpatient treatment, expressed the low-est satisfaction with health information, emotional support, instrumentalsupport, and professional support compared to other groups. For manysocial workers in South Korea like in the U.S., their programs and ser-vices mainly focus on patients and their families in inpatient settings.However, this study provides evidence that unmet family caregivers’needs extend well beyond the inpatient setting or acute phase. Rehabili-tation systems can have a beneficial outcome by addressing the speci-fied needs, considering different treatment phases and settings. Oncethe patient is discharged from the inpatient setting, and treatment is ar-ranged in outpatient clinics, the family sees the medical doctor who canprovide health information regularly but not often and rarely has an op-portunity to meet with social workers, who can provide emotional sup-port and useful information as professional and instrumental supports.It is recommended that social workers improve their follow-up servicesfor meeting those neglected needs of caregivers whose patients receivetreatment from outpatient clinics. In this study, as a treatment setting,the geriatric day hospital appears to be a useful setting for meeting thediverse needs of caregivers caring for their stroke patients better thanother settings. The geriatric day hospital is characterized by two as-pects: First, the setting has diverse programs for the caregiver such aspersonal counseling from an interdisciplinary team, including doctors,nurses and social workers, educational groups, and self-help groups.Second, the setting is oriented to home-based rehabilitation which iscontrary to the inpatient setting, and provides more opportunities forcaregivers to be with their other family members and do their householdchores. However, it is necessary to verify the effectiveness of the geriat-ric day hospital program for meeting the needs of caregivers in furtherstudies. In addition, other limitations of this study should be recognized.First, the sample size was relatively small and limits the generalizabilityof the results. Second, questionnaires were returned by mail and couldnot be independently verified. This process also allows for a self-selec-tion bias, which may have an impact on the results. Finally, the partici-


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pants of this study were Korean family caregivers, so the findings of thestudy are naturally limited to South Korean rehabilitation systems.Cross-sectional studies may be useful to assess the differences betweenSouth Korea and the U.S. for future studies.

Received: 08/25/04Accepted for Publication: 02/15/06

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doi:10.1300/J010v45n01_06


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Documents

Needs of Family Caregivers Caring for Stroke Patients