healthy aging for caregivers : what are their needs?

Healthy Aging for Caregivers

What Are Their Needs?

TINA WUa AND KAREN LOb

aDepartment of Social Work, Shih-Chien University, Taipei, TaiwanbSimon Fraser University, Biology Department, Vancouver, BC, Canada

ABSTRACT: The aim of this study was to design a culture-sensitive scaleto measure caregiver’s burden for the purpose of identifying their needsin Taiwan. In this study, four factors were identified as caregiver’s toppriority needs: “personal factors,” “relation factors,” “financial factors,”and “reward factors.” Definitions for each factor are also discussed. Thetotal variances explained by the four factors are 34%, 13%, 9%, and 8%,respectively. The results show caregivers in Taiwan place more emphasison their physical and emotional interaction with the care-receivers thanis found in other cultures. Policy recommendations inferred from thesefindings are made. It is necessary for the government or organizationsto provide services to fulfill caregivers’ needs to promote a healthy agingprocess of the caregivers themselves. Participants who cared for theirelderly parents or relatives were selected randomly from the island ofTaiwan. The total selected sample size of caregivers is 2524, who werecaring for 3504 persons. Data were analyzed by univariate, bivariate, andmultivariate methods. Maximum Likelihood Extraction Factors Analysisand LISREL for Structural Equation Modeling methods were used toconfirm and make final the structure of the scale. Recommendationsand suggestions are provided for further studies on culturally sensitiveprojects.

KEYWORDS: caregiver; needs assessment; confirmatory factor analysis;LISREL; structural equation modeling method

INTRODUCTION

Webster’s dictionary defines “healthy” as “a state of enjoying health andvigor of body, mind, or spirit,” while the definition of aging is “showing theeffects or the characteristics of increasing age.” When these two concepts areput together, healthy aging could be the state of “enjoying health and vigor

Address for correspondence: Dr. Tina Wu, Associate Professor, Department of Social Work,Shih-Chien University, # 70, Tah-Chih Street, Taipei, Taiwan. Voice: 886-2-25381111: ext.: 6915;fax: 886-2-25338622.

[email protected]

Ann. N.Y. Acad. Sci. 1114: 326–336 (2007). C© 2007 New York Academy of Sciences.doi: 10.1196/annals.1396.017

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of body, mind, or spirit while experiencing the effects of increasing age.” InTaiwan, as the elderly population continues to grow, healthy aging issues haverisen to become the top priority of social/health policy concerns. There arenot only issues for individual elderly, but there are also issues for the familymembers and friends who are caring for them. In the paper, we want to identifyprominent need factors of family caregivers as well as to address and discussissues and services that would improve the caregiver’s health and well-being.

The World Health Organization defined health as “a state of complete phys-ical, mental, and social wellbeing, and not merely the absence of disease”(p. 16).1 The WHO recognized that psychosocial well-being is an importantcomponent of health; however, health remained as an abstract concept withoutobjective operational definition. For many years, it has been too difficult for thefield to accomplish the mission for defining health in a comprehensive and spe-cific way. Recently, there is a trend to define health in terms of “quality of life.”In this definition, health is “the opportunity to make choices and to gain satis-faction from living despite functional limitations.” It is implied that health isa dynamic process of interaction between families/communities/organizationsand individuals. Therefore, one’s health involves freedom of choice, interac-tion among formal and informal organizations (e.g., caregivers), and individualcharacteristics. Everyone involved in caregiving triad network needs to takedeliberate action to make the changes necessary for people in the circle towardhealthy aging. Health is no longer a personal matter in the process; rather, it isthe result of network interactions.

Traditionally, aging has been viewed as the process of continual declinein health. In the process of caregiving, the aging process occurs at the sametime to both caregivers and care-recipients. In most aging research2 the elderlycare-receivers were usually portrayed negatively. People tend to focus on thephysical and mental losses of those being cared for, as well as on decreasesin physical attractiveness. Thus, we see that the aging process has a negativeimpact on the recipients of care. However, very little attention has been paidto the caregiver’s aging process; instead, researchers have mainly focused onthe caregiver’s burden. If caregivers and caretakers are aging together as a unit,can we apply this aging process view universally and hold it to be true of theaging process of the caregivers as well? What would be the outcome whenindividuals have the combined experience of the aging process and the burdenof caregiving?

To date, most family caregiving research has portrayed caregiving as a nega-tive life experience for caregivers.3 This particular conceptualization has beenstudied extensively and has been professionally termed caregiver’s burden.However, the concept of caregiving should involve both positive and negativeaspects. Human interaction has its complexity, especially with family mem-bers, relatives, or friends. Research focusing on both aspects could providea better understanding of the caregiving experience and help clinicians andpractitioners to work more effectively with the family caregiver.4

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Many studies have explored factors for the caregiver’s well-being. Schulzet al.5 reviewed past research and found factors, such as income, spouse,self-rated health, perceived stress and burden, life satisfaction, self-esteem/self-mastery, and caretaker problem behaviors, consistently influencedthe caregiver’s psychiatric morbidity. After empirical testing, their studyshowed physical morbidity was associated with caregiver’s depression, socialsupport, the care-recipient’s problem behaviors, and cognitive impairment. Al-though demographics are not generally studied by health care/social services,public-funded service interventions to improve the caregiver’s well-being maybe developed for such other factors as the caregiver’s perceptions regardingcaregiving, which is related to how they view the process and the outcome oftheir caregiving. Usually, caregivers view the concept as a “burden,” whichtends to have negative effect on their own well-being as well as on their qualityof life. Numerous studies have examined the relationship of caregiver burdenwith such variables of well-being as depression or physical health, and haveshown that caregiver burden is a significant factor on both variables.6–9

“Caregiver’s burden” is a subjective judgment, involving the process of care-giving appraisal, which is defined by Lawton et al.10 as “all cognitive andaffective appraisals and re-appraisals of the potential stressor and the efficacyof one’s coping efforts.” After years of research, many researchers have claimedthat caregiving is perceived as both a negative and a positive experience bycaregivers. Positive appraisals of care have been generally operationalized as“satisfactions,” “uplift,” “reward,” or “mastery,” whereas negative appraisalsare reviewed as “anxiety,” “tiredness,” “breathlessness,” “fatigue,” “emotionaldistress,” and “depression,” for example.11–14

Furthermore, Sales15 has pointed out that family burden and quality of lifeshould include both subjective and objective burden appraisal of caregiving.Objective burden maybe the direct tasks of care (e.g., helping with activities ofdaily living [ADL], supervising), indirect tasks, length of time taken in deal-ing with the emotional needs of the caretaker, or effects of caregiving on otheraspects of life (family interaction, family routine, leisure, work/employment,mental health, physical health, social network, others outside household, chil-dren, financial consequences). As to the subjective burden, it is related topersonal reactions to caregiving, such as feeling distressed, stigmatized, wor-rying, shameful, and guilty of paying attention to one’s needs first instead ofcare-recipient’s needs.

In this study, critical aspects of caregiving are investigated and identified.Positive and negative appraisals of care refer to any cognitive and affectiveevaluation of one’s caregiving experience that describes caregiving as good(or bad) and comfortable (or uncomfortable). The framework of the researchintegrates positive/negative appraisal of four caregiving domains based onreview of the literature and results of qualitative interviews with study partici-pants. The four domains are: (1) satisfaction/dissatisfaction with the attachmentor relationship with the specific care-recipient (relationship satisfaction); (2)

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consequential gain/loss from the caregiving experience (consequential gain);(3) confidence/fear in taking care of the care-recipients (role confidence); and(4) satisfaction/dissatisfaction with fulfilling the socially normatively assignedrole (normative fulfillment).

By definition, positive relationship satisfaction is a positive appraisal of theattachment relationship with the particular care-recipient. Role confidence isthe sense that a caregiver perceives whether she/he is doing a good job incaregiving and whether she/he is the best person to care for the care-receiver.Consequential gain from a caregiving experience includes perceptions of re-ward incurred as a result of the caregiving experience (e.g., one’s insightfulview of life and death, closer family ties, personal growth, or any new meaninggenerated in the caregiver’s life). Normative fulfillment through the caregiverrole means that caregivers feel good about caregiving because they are con-sidered as virtuous citizens of the society. Any behavior or thinking on thecontrary to the positive appraisal defined from above would be considered asnegative sides of each appraisal.

In Eastern culture, filial piety has been long recognized as an honorabledeed, although social change is gradually taking a toll on this concept. InTaiwanese culture, generally speaking, people respect the one who is takingcare of the disabled or the elderly in the family. The society considers it a virtueand honors them verbally and non-verbally. Although the terms “filial piety”and “cause and effect of filial piety” are not well-known in Western culture,the concept of filial piety is not wholly unfamiliar, for it is included in theidea of kindness. The moral of goodness being rewarded by goodness is alsoillustrated in Western fairytales, such as Cinderella and Snow White.

In conclusion, the findings of the study will help the government and profes-sionals in the field of aging come together to materialize a plan for caregivers.Their healthy aging would in turn help their care-recipients have a better qual-ity of life. As a result of this reciprocity, aging will become not only a natural,but also rewarding process.

METHODS

Subjects

The subjects for this research project were family caregivers providing home-based care for elderly relatives aged 65 or above. Participating caregivers wererandomly selected from a government household registry of those who werereceiving home-care services at the time of research. However, some partici-pants were in poor physical conditions and could not take part in the research.All together 2524 caregivers responded to the face-to-face questionnaireinterview, a response rate of 82.2%. Their family members were recruitedas the validating party for the research. The total number for participating care


TABLE 1. Descriptive statistics of participating care-recipients (n = 3504)

Variables Range Mean/Median SD Coding algorithm

Age 65–104 77.3 7.5 Chronological ageSex 1–2 2 0.5 1: male; 2: femaleEducation 1–7 1 1.5 1: illiterate; 2: literate

3: elementary school; 4: juniorhigh; 5: senior high; 6: college;7: graduate study and above

Marital status 1–5 3 1.1 1: living with spouse; 2: notliving with spouse; 3: spousedeceased; 4: divorced; 5: nevermarried

Income 1–13 3 2.5 1: NT$10,000; 2: 10,000–19,9993: 20,000–29,999;4: 30,000–39,9995: 40,000–49,999;6: 50,000–59,9997: 60,000–69,999;8: 70,000–79,9999: 80,000–89,999;10: 90,000–99,99911: 100,000–199,999;12: 200,000–299,99913: 300,000 and above.

recipients was 3504, a response rate of 82.5%. Since some of the caregiverswere caring for more than one family member, the caregivers’ number is lessthan that of the participating care-recipients. The exact care-recipients’ agerange is 2–104 years; however, only persons over 65 were selected and in-cluded in the research design.

The following provides details of the study.

Questionnaire

A questionnaire was developed for the study paying closer attention to Tai-wanese family culture values with regard to filial piety in order to discern thecaregivers’ true appraisal of their caregiving needs, stress, subjective quality oflife, as well as other variables including that of individuality, which is a variablevalued in Western culture. TABLES 1 and 2 describe both the care-recipients andcaregivers.

Originally, the questionnaire design gathered several scales listed in the agingresearch literature, such as the SF-12, CED-D in Chinese elderly, Mini-MentalState Examination (MMSE), and the Zarit Caregiver Burden (ZBI). Theseresearchers had conceptualized burden centralized around factors of “timespent caring for the care-recipient,” “financial costs,” “physical disability,”

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TABLE 2. Descriptive statistics of participating caregivers (n = 2524)

Variables Range Mean/Median SD Coding algorithm

Age 25–105 68.0 15.3 Chronological ageSex 1–2 2 0.5 1: male; 2: femaleEducation 1–7 4 1.5 1: illiterate; 2: literate

3: elementary; 4: junior high; 5:senior high; 6: college; 7:graduate and above

Marital status 1–5 1 1.3 1: living with spouse; 2: notliving with spouse; 3: spousedeceased; 4: divorced; 5:never married

Income 1–13 3 2.5 1: NT$10,000; 2: 10,000–19,9993: 20,000–29,999;4: 30,000–39,9995: 40,000–49,999;6: 50,000–59,9997: 60,000–69,999;8: 70,000–79,9999: 80,000–89,999;10: 90,000–99,99911: 100,000–199,999;12: 200,000–299,99913: 300,000 and above.

Self-rated health 1–5 3 0.9 1: excellent; 2: good; 3: fair;4: not good; 5: poor

No. of years caregiving 10.2 11.6 Actual number of years

and “emotional distress and psychological functioning.” Although all scales areuseful in assessing a specific type of burden, broader measures that can assessculture-sensitive domains of burden should be developed, especially from bothsubjective and objective perspectives of burden. Consequently, positive andnegative domains regarding caregiving are included in the construction of thescale. In addition, culture-sensitive wording was taken into consideration inconstructing the sentences, say in avoiding words that would trigger “socialstandards” judgment.

Sampling and Data Collection

The items of the Taiwanese Culture-Sensitive Subjective Appraisal Scale(TCSSAS) are shown in FIGURE 1.

The TCSSAS was originally designed as a pilot project for a governmentservice intervention program. As well, the data collection process was initiatedto serve the same function. All potential care-recipients were identified orscreened by government officials or case managers in their own communities.All of them were diagnosed as having “functional disabilities,” with more thanone ADL and/or IADL limitations. Their caregivers were then recruited to


FIGURE 1. Structural equation modeling of TCSSAS.

participate in the project afterwards. Informed consent was obtained from allparticipating caregivers. All together, there were 4247 care-recipients; however,only 3504 agreed to be part of the investigation for a response rate of 82.5%.Reasons for not wanting to participate were: “not at home,” “moved away,”“institutionalized,” “passed away,” and “refused to talk to the interviewers.”Of the 2524 caregivers, reasons for those who refused to participate were:“no time,” “foreign-aide—cannot communicate in local language (2%),” and“paid-care” for a positive response rate of 82.2%.

Trained interviewers distributed and read the questionnaires to the care-givers, who were then given enough time to complete the questionnaire items.After the interview, demographic information was transferred from the officialcase record to the back of the questionnaire. Average time spent for each ques-tionnaire/interview is about 30 minutes.

DATA ANALYSES

The purpose of the research is to use the designed instrument to detect theneeds of the participating caregivers. Following the examination of descriptive

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TABLE 3. The Taiwanese Culture-Sensitive Subjective Appraisal Scale (TCSSAS)

Items Scale ranking

1. Feeling tired on account of caregiving 0–3 (0: never; 1: seldom;2: occasionally;

3: often)2. Feeling one’s health is depreciating because of

caregiving0–3

3. The care-recipient makes me angry 0–34. Feeling distressed because of care-recipient’s poor

conditions0–3

5. Feeling sorry for not doing enough for care-recipient 0–36. Feeling segregated from relative and friends because of

caregiving0–3

7. Feeling trapped at home (cannot travel) because ofcaregiving

0–3

8. Feeling the need to watch over care-recipient all the time 0–39. Feeling no time for self because of caregiving 0–3

10. Feeling strained financially (cannot afford the involvedcaregiving cost) on account of caregiving

0–3

11. Feeling had to live one’s life under a tight budget due tocaregiving

0–3

12. Feeling relationship with family members is straineddue to caregiving

0–3

13. Feeling incapable of taking care of other familymembers on account of caregiving

0–3

14. Feeling no positive emotional support from other familymembers on account of caregiving

0–3

15. Feeling disturbed on account of caregiving (e.g., familylife needs re-adjustment to accommodatecare-recipient’s needs)

0–3

16. Feeling one’s importance through caregiving 0–317. Feeling being respected and well-valued on account of

caregiving0–3

18. Feeling peace in one’s heart and fulfilled in one’s duty inlife through caregiving

0–3

19. Feeling ashamed of care-recipient’s behavior 0–320. Feeling one no longer has the ability to care for the

care-recipient0–3

21. Feeling limited in having a future or in planning for onebecause of caregiving.

0–3

22. Feeling arrangement of one’s everyday life constrainedby need to center on care-recpient’s needs.

0–3

statistics, bivariate and multivariate analyses were adopted to detect therelationship between items among the TCSSAS scale. In multivariate analysis,the reliability and validity of TCSSAS were examined, following by principaland confirmatory factor analyzes.

Furthermore, in order to finalize the structure of factor analyses, latentvariable analysis or structural equation modeling method were conducted to


confirm the variance explained by each domain and item. Previous care-giver burden research shows that burdens of families associated with a care-recipient’s illness can take many forms. Thus, it is reasonable to assume thatthe concept of caregiver’s appraisal should be viewed with multidimensionalfactors. Data were analyzed with SPSS12.0 and LISREL Structural Equationmodeling 8.51.

RESULTS AND DISCUSSION

Originally, the instrument had 22 items, but after careful testing and analysis,the items were reduced to 15. In the process, the total variance was accountedfor, cumulative rotation Sums of Squared Loadings, or total variance explainedby the model changed from 42.87% to 52.1%. In summary, the smaller numberof items has better ability to explain the model. An interesting finding is thatafter deleting all four items related to the individuality value (i.e., a valuestressed in Western society), the instrument had a better power in the totalvariance explained. The total variances explained by the four factors are 34%,13%, 9%, and 8%, respectively (i.e., personal, relational, financial, and rewardfactors). The results show caregivers in Taiwan place much more emphasis ontheir physical and emotional interaction with the care-receivers than is foundin other cultures.

As to the validity and reliability of the scale, the criteria validity checkamong items in the same dimension shows a high correlation coefficient of0.563, while the reliability Cronbach alpha value is 0.86 for the final 15 items.In conclusion, the results confirm the scale is reliable and valid.

What kinds of services should be offered to caregivers in order to lessentheir burden in caring for their family members? We wish to propose a triadmodel for caregiver services instead of a dyad model just between caregiversand caretakers.

The government should be included in the service paradigm for caregivers.The government should be responsible for integration of service packages fordifferent levels of caregiver’s needs. Services, such as companions, escorts,

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live-in help, provision for light housekeeping and laundry, shopping and mealpreparation, medication follow-up, bathing and dressing; registered nurses, li-censed practical nurses, certified nurse assistants; trained caregivers, hospice,facility staffing, recreational activities, and insurance/welfare-related informa-tion sharing and assistance should be offered.

This study possesses both strengths and weaknesses. The strengths lie inits originality trying to construct a culture-sensitive measurement; however,further testing is required. Taiwanese policymakers should refer to this researchas a benchmark for future development for caregiver’s services.

ACKNOWLEDGMENTS

We want to thank Dr. Shwu-Chong Wu for providing a raw data set for thestudy.

REFERENCES

1. WORLD HEALTH ORGANIZATION (WHO). 1947. Constitution of the World HealthOrganization. Geneva, p. 16.

2. PALMORE, E. B. 2006. Age discrimination: an historical and contemporary analysis.Gerontologist 46: 848–850.

3. YAMAMOTO-MITANI, N. et al. 2004. Subjective quality of life and positive appraisalof care among Japanese family caregivers of older adults. Quality of Life Res.13: 207–221.

4. KRAMER, B.J. 1997. Gain in the caregiving experience: Where are we? What next?Gerontologist 37: 218–232.

5. SCHULZ, R., A.T. O’BRIEN, J. BOOKWALA & K. FLEISSNER. 1995. Psychiatric andphysical morbidity effects of dementia caregiving: prevalence, correlates, andcauses. Gerontologist 35: 771–791.

6. ARAI, Y., K. KUDO, T. HOSOKAWA, et al. 1997. Reliability and validity of theJapanese version of the Zarit caregiver burden. Psych. Clin. Neurosci. 51: 281–287.

7. GALLICHIO, L., N. SIDDIQI, P. LANGENBERG & M. BAUMGARTEN. 2002. Genderdifferences in burden and depression among informal caregivers of dementedelders in the community. Int. J. Geriatr. Psych. 17: 154–163.

8. PRUCHNO, R.A., N.D. PETERS & C.J. BURANT. 1995. Mental health of co-residentfamily caregivers: examination of a two-factor model. J. Gerontol. Psychol. Sci.50B: P247–P256.

9. SPARKS, M.B., C.J. FARRAN, E. DONER & E. KEANE-HAGERTY. 1998. Wives, hus-bands, and daughters of dementia patients: predictors of caregivers mental andphysical health. Schol. Inq. Nurs. Pract. 12: 221–234.

10. LAWTON, M.P., M.H. KLEBAN, M. MOSS, et al. 1989. Measuring caregiving ap-praisal. J. Gerontol. Psychol. Sci. 44: P610–P617.

11. LAWTON, M.P., M. MOSS, M.H. KLEBAN, et al. 1991. A two-factor model of care-giving appraisal and psychological well-being. J. Gerontol.: Psychol. Sci. 46:P181–P189.


12. KINNEY, J.M. & M.A.P. STEPHENS. 1989. Hassles and uplifts of giving care to afamily member with dementia. Psychol. Aging 4: 402–408.

13. PRUCHNO, R. 1990. The effects of help patterns on the mental health of spousecaregivers. Res. Aging 12: 57–71.

14. PICOT, S.J.F., J. YOUNGBLUT & R. ZELLER. 1997. Development and testing of ameasure of perceived caregiver rewards in adults. J. Nurs. Meas. 5: 33–52.

15. SALES, E. 2003. Family burden and quality of life. Quality of Life Res. 12(Suppl1): 33–41.

ADDITIONAL RESOURCES

1. COUSINS, R., A.D.M. DAVIES, C. TURNBULL & J.R. PLAYFER. 2002. Assessing care-giving distress: a conceptual analysis and a brief scale. Br. J. Clin. Psychol. 41:387–403.

2. LIANG, J., S.C. WU, N.M. KRAUSE, et al. 1992. The structure of the mental healthinventory among Chinese in Taiwan. Medical Care 30: 659–675.

3. NORROW-HOWELL, N., E. PROCTOR & P. ROZARIO. 2001. How much is enough?Perspectives of care recipients and professionals on the sufficiency of in-homecare. Gerontologist 41: 6.

4. STRABRIDGE, W.J. 1991. The effect of social factors on adult children caring forolder parents. University of Washington, Seattle, USA. Dissertation Abs. Int.52(3-A): 1094.

healthy aging for caregivers : what are their needs?

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