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International Journal of Nursing Practice 2015; 21: 622–634

RESEARCH PAPER

Use of Zarit Burden Interview in analysis of family caregivers’ perception among Taiwanese caring with hospitalized relatives Pi-Ming Yeh PhD RN Assistant Professor, Department of Nursing, Missouri Western State University, St Joseph, Missouri, USA

Yuanmay Chang PhD RN Director, Chairman Office, Shin Kong Memorial Hospital, Taipei, Taiwan Associate Professor, Nursing, National Taipei University of Nursing and Health Science, Taipei, Taiwan

Accepted for publication October 2013 Yeh P-M, Chang Y. International Journal of Nursing Practice 2015; 21: 622–634 Use of Zarit Burden Interview in analysis of family caregivers’ perception among Taiwanese caring with hospitalized relatives This study was conducted to examine the relationships between family caregivers’ perception of caregiving and its influencing factors among Taiwanese with hospitalized relatives. The study used a cross-sectional and descriptive correlational design. A convenience sample of 200 primary caregivers of hospitalized patients diagnosed with cancer, stroke and chronic illness was recruited in a Taiwanese Medical Center; this focus was chosen because cancer, stroke and chronic illness generally require long term care. Data were collected by structured questionnaires. Pearson product-moment correlation and stepwise multiple regression analyses were used to analyse the results of this study. Family caregivers who lacked family support and whose patients’ ADL (activities of daily living) dependency was increasing experienced a greater caregiving burden. Family caregivers who had better psychological well-being, better quality of relationship and more caregiving knowledge experienced a lower caregiving burden. Quality of relationship, lack of family support and patients’ ADL dependency accounted for 43% of the Zarit Burden Interview variance. The results indicated that family caregivers’ perception of caregiving included sacrifice, strain, embarrassment, anger and loss of control. It is vital for nurses to understand these caregiving perceptions and their related factors to provide a holistic care plan. Key words: family caregiver perception, hospitalized patients, Taiwan, Zarit Burden Interview.

INTRODUCTION Zarit Burden Interview Correspondence: Pi-Ming Yeh, Department of Nursing, Missouri Western State University, 3201 North 34th Terrace, St Joseph, MO 64506, USA. Email: [email protected] © 2014 Wiley Publishing Asia Pty Ltd

The Zarit Burden Interview (ZBI) was developed by Zarit et al. in 1980 in the USA to measure family caregiver burden related to the care of community-dwelling older persons with Alzheimer’s disease.1 The ZBI has been translated into many languages and has been used by researchers doi:10.1111/ijn.12333

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Over Time

Over Time Demands

Process Family Vulnerability due to life change and pile up

Care receivers’ ADL dependence

Figure 1. A concept model of factors influencing family caregivers’ perception.

in various countries, such as Japan,2 Korea,3 France,4 Israel,5 Germany,6 Taiwan7 and China.8 Its high reliability and good validity have been examined in many studies. The ZBI is the first measure of family caregiver burden and one of the most common instruments to be used. ZBI expresses family caregiver burden from five concepts, including sacrifice/strain, inadequacy, embarrassment/anger, dependency and loss of control.1 These concepts are focused on the feeling and perceptions of family caregivers. ZBI is a very good instrument, but few Taiwanese researchers have used ZBI in their studies. Therefore, in this study, ZBI was used to analyse the phenomenon of Taiwanese family caregiver perception.

Taiwanese family caregivers The average lifespan in Taiwan continues to get longer and the standard death rate of Taiwanese people continues to go down.9 Ageing processes in older people cause chronic illness or increasing dependence in daily living activity. Therefore, Taiwanese family caregivers play important roles in the family with ill relatives. In Taiwan, filial piety is an important virtue that is a product of the culture and social environment.10,11 About 70% to 80% of older people who are sick and with disability are cared by their family members.12 In general, Taiwanese families are willing to live with older parents.10,11 Most family caregivers stay in the hospital taking care of their ill relatives,13 because they feel family can provide a holistic care and spiritual support to patients. They also think that taking care of parents is the children’s responsibility and nothing can replace a warm family relationship.13 Therefore, family caregivers are already intimately familiar with the role of caregiver before the patient’s discharge to the family home.14 Few studies have examined the relationships among family caregivers’ perception of caregiving and their

Outcome

Psychological Well-being Family Support

Quality of Relationship Knowledge of Caregiving

Family Caregiver Perception: 1. Sacrifice/strain 2. Inadequacy 3. Embarrassment/anger 4. Dependency 5. Loss of control

psychological well-being, the quality of the relationship between family caregiver and care receivers, family support, caregiving knowledge, and patients’ activities of daily living (ADL) dependency. Therefore, the purpose of this study was to examine the relationships between family caregivers’ perception of caregiving and the related factors among Taiwanese with hospitalized relatives diagnosed with chronic illness, cancer or stroke.

Theoretical framework The theoretical framework (Fig. 1) was developed by review of the literature.1,13,15 Family Stress Theory is defined as ‘Person, or family, is viewed as encountering hardships and changes as an inevitable part of family over the life cycle. Families also develop strengths and capabilities to enhance the development of individual members and to protect the family unit from major disruption during times of transition and change’.15 The care receiver’s ADL dependency is a stressor that influences the family caregivers’ perception. In the adaptation process, the quality of the relationship between caregiver and care receiver, family support, family caregiver’s psychological well-being, and knowledge of caregiving are all factors affecting the impact of the care receiver’s ADL dependency on family caregivers’ perception.13 A family caregiver’s perception as an outcome is expressed by increasing or decreasing the family caregiver’s burden. In this study, the family caregiver’s perception is defined by: (i) sacrifice and strain; (ii) inadequacy; (iii) embarrassment or anger; (iv) dependency; and (v) loss of control (Fig. 1).1

Research questions 1 What is the relationship between a care receiver’s ADL dependency and a family caregiver’s perception? 2 What are the relationships among family caregiver’s psychological well-being, quality of the relationship between the caregiver and care receiver, family © 2014 Wiley Publishing Asia Pty Ltd

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support, and knowledge of caregiving associated with the family caregiver’s perception? 3 How much of the family caregiver’s perception will be predicted by the independent variables of the care receiver’s ADL dependency, family caregivers’ psychological well-being, quality of relationship between caregivers and care receivers, family support, and caregiving knowledge?

METHODS Design A descriptive, correlational research design was used to examine the perception of family caregivers and explore the influences of the patients’ ADL dependency, family caregivers’ psychological well-being, quality of relationship between patients and family caregivers, family support, and knowledge of caregiving on family caregivers’ perception. Data on these factors were collected using structured questionnaires.

Sample and setting The study recruited a convenience sample of 200 primary family caregivers with hospitalized relatives diagnosed with cancer, stroke and chronic illness in the general medical rooms and cancer unit in a medical centre in Taiwan. The sampling criteria for family caregivers were: (i) able to read and write Chinese; (ii) age 18 or older; (iii) providing care to the patient in the hospital for at least 5 days per week and at least 6 h per day (to isolate and identify the major family caregiver when several caregivers were involved); (iv) able to provide care for a patient diagnosed with cancer, stroke, chronic illnesses who needed assistance with at least one of the ADL.

family support, and family caregiver perception, including sacrifice/strain, inadequacy, embarrassment/anger, dependency and loss of control.

Index of ADL

Index of ADL16 was used to measure care receivers’ ADL dependency. In this study, the care receivers’ dependencies of ADL were identified by family caregivers, such as getting in/out of bed, getting to/using toilet, getting dressed/undressed, eating, walking (from 1 = no help needed to 4 = cannot do it; alpha = 0.90).17 The construct validity of the ADL index was established with older people with chronic diseases.18 Higher scores indicate higher dependence of care receivers. The highest score is 20, and the lowest score is 5. In this study, the Cronbach’s alpha was 0.96.

Quality of the relationships The Caregiver Reaction Assessment includes 24 items and consists of the following five subscales: (i) caregiver’s esteem; (ii) lack of family support; (iii) impact on health; (iv) impact on schedule; and (v) impact on finances.19 This is a five-point Likert scale ranging from strongly agree (5) to strongly disagree (1). Caregiver’s Esteem Subscale was used to measure quality of the relationships between caregivers and patients, because the items in the Caregiver’s Esteem Subscale are associated with the caregivers’ interaction between caregivers and care receivers. This subscale contains seven items with a highest score of 35, and a lowest score of 7. Higher scores indicate a better quality of relationship between family caregivers and patients. In this study, the internal consistency reliability was 0.84.

Lack of support subscale14 Data collection After Institutional Review Board approval of this study, the participants were identified by nurses of each unit according to sampling criteria. If family caregivers were willing to participate in this study, the nurses explained the study to them. The patients were asked to fill out the informed consent and questionnaires. After they completed the questionnaires, the nurses returned them to a locked box in the nursing station.

Data collection instruments Data were collected using five instruments to measure patients’ ADL dependency, caregivers’ quality of relationship, psychological well-being, caregiving knowledge, © 2014 Wiley Publishing Asia Pty Ltd

Lack of support subscale was used to measure friend and relative support; it contains five items. The highest score is 25, and the lowest score is 5. Higher scores indicate lower support resources. In this study, the internal consistency reliability was 0.69.

Psychological well-being scale (PWBS) PWBS was used to measure caregivers’ psychological well-being.20 The scale consists of 18 items and six concepts (autonomy, environmental mastery, purpose in life, personal growth, positive relations with others and self-acceptance). The items were scored on a six-point Likert-type scale ranging from (1) strongly disagree to (6) strongly agree. Higher scores indicate better psychological

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well-being. The highest possible score is 108, and the lowest possible score is 18. Confirmatory factor analyses were used to prove the validity of the scale.21 The Cronbach’s alpha was 0.77 in this study.

Knowledge of Caregiving subscale The Knowledge of Caregiving subscale of the Family Caregiver Factor Inventory22 was used to measure the caregiver’s knowledge about how to take care of the care receiver. Confirmatory factor analysis was used to examine construct validity. The result of factor analysis demonstrated an excellent overall fit. There are seven items in this subscale. Participants were asked to rate each item on a five-point Likert scales ranging from 1 = completely not understanding, to 5 = understanding completely. The highest possible score is 35, and the lowest possible score is 7. In this study, the internal consistency reliability was 0.83.

ZBI The ZBI was used to measure the family caregiver’s perception. ZBI was developed by Zarit, Reever and Bach-Peterson in 1980. Five concepts (sacrifice/strain, inadequacy, embarrassment/anger, dependency and loss of control) were assessed by this questionnaire. The items were scored on a five-point Likert-type scale ranging from (0) never, (1) rarely, (2) sometimes, (3) frequently, to (4) always. Higher scores indicated higher family caregiver burden. The maximum total score is 88, and the minimum score is 0. Evidence for the validity of the scale was examined by confirmatory factor analyses.1,23 In previous research, internal consistency reliability was 0.83– 0.94. The Cronbach’s alpha was 0.87 in this study.

Corporation, Armonk, NY, USA). Descriptive statistics (mean, SD, range, frequency and percentage) were used to describe the study sample. Pearson product-moment correlation and stepwise multiple regression analyses were used to analyse this study.

RESULTS Characteristics of family caregivers Two hundred participants were recruited in the study. The ages of family caregivers ranged from 18 to 77 years old, with a mean age of 45.77 years (SD = 12.82). The study included 71 men (35.5%), 129 women (64.5%), 140 married (70%) and 46 single (23%). The relationships of family caregivers to care receivers included 50 daughters (25%), 39 wives (19.5%), 38 sons (19%), 24 husbands (12%) and 16 daughters-in-law (8%). One hundred forty-eight (74%) had a high school education or beyond. Religious status included 104 practising Buddhism (52%), 37 Taoism (18.5%), 32 not religious (16%). Only 2.5% (n = 5) were Christian. The majority of the family caregivers (n = 119, 59.5%) answered ‘Yes, their work time was affected after being a caregiver’. The mean length of being a caregiver was 2.09 years (SD = 4.19), including 105 participants for less than 6 months (58.5%), 14 for 6 months to 1 year (7.8%) and 61 for more than 1 year (33.7%).

Characteristics of care receivers

All structured questionnaires were translated into Chinese by the researcher and back-translated from Chinese to English by an independent translator. Discrepancies between the researcher and the independent translator were identified and repetition of the translation procedure continued until all discrepancies were resolved. The Chinese version of the questionnaires has been examined by pilot studies and has shown good internal consistency reliability.

The gender of care receivers broke down to 118 men (59.3%) and 81 women (40.7%). Most were married (n = 139, 69.5%); only 38 (19%) were widowed. The age of care receivers ranged from 26 to 99 years, with a mean age of 64.92 years (SD = 16.15). The diagnoses of care receivers included 108 (57.4%) chronic diseases, 60 (31.9%) cancer and 33 (17.6%) stroke. Thirty-two (16%) patients felt pain, 29 (14.5%) experienced fatigue and loss of appetite, 27 (13.5%) had weight loss, 18 (9%) had respiratory problems, and 15 (7.5%) experienced nausea and vomiting. Care receivers’ ADL included 90 who ‘needed help to walk’ (45%), 75 who ‘totally cannot walk’ (37.5%), 163 who ‘required help to get dressed and undressed’ (81.5%), 162 who ‘required assistance to get in and get out of the bed’ (81%), 157 who ‘needed help to use the toilet’ (78.5%) and 139 who ‘needed help to eat’ (69.5%).

Data analysis

Descriptions of major variables

The analyses were conducted using the Statistical Package for the Social Sciences PC+ Version 16.0 (IBM

In Table 1, care receivers had high ADL dependency (M = 13.1, SD = 5.38, ranged from 5 to 20). Family

Questionnaire translation

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Table 1 Description of major variables Variable

M

SD

Min Max

Patients’ ADL dependency Caregivers’ psychological well-being Quality of relationship Knowledge of caregiving Lack of family support Sacrifice and strain (ZBI-1) Inadequacy (ZBI-2) Embarrassment/Anger (ZBI-3) Dependency (ZBI-4) Loss of control (ZBI-5) Total perceptions of caregivers

13.1 5.38 5 79.66 11.50 33 24.37 4.59 6 28.24 4.10 17 9.91 4.01 5 10.75 5.32 0 4.56 2.01 0 2.29 2.07 0 5.87 2.58 0 4.09 3.06 0 28.27 11.46 6

20 105 30 35 23 25 8 9 12 14 65

Total perceptions of caregivers (total scores of ZBI, increasing scores indicated increasing burden). ADL, activities of daily living; ZBI, Zarit Burden Interview.

caregiver scores on Psychological Well-being ranged from 33 to 105. Overall, participants expressed a high level of Psychological Well-being (M = 79.66; SD = 11.5). Family caregiver scores on Quality of Relationship with patients ranged from 6 to 30. Participants expressed a high level of Quality of Relationship with patients (M = 24.37; SD = 4.59). Family caregiver scores on knowledge of caregiving ranged from 17 to 35. Participants expressed a high level of knowledge of caregiving (M = 28.24; SD = 4.10). Family caregiver scores on lack of family support ranged from 5 to 23. Participants expressed a low to moderate level of lack of family support (M = 9.91; SD = 4.01) (Table 1).

The descriptions of ZBI scale The ZBI1 includes five subscales. The higher scores indicate a higher family caregiver burden. Factor I: Sacrifice and Strain subscale included seven questions: # 2, 3, 7, 10, 11, 12 and 13. The scores of Sacrifice and Strain subscale ranged from 0 to 25. Family caregivers felt that they experienced a medium level of sacrifice and strain (M = 10.75; SD = 5.32) (Table 1). For example, in response to question #2 ‘Do you feel that because of the time you spend with your relative that you don’t have enough time for yourself?’, 84 (42.4%) family caregivers answered ‘sometimes’, 37 (18.7%) ‘frequently’ and 8 (4%) ‘always.’ The total of these three groups is 65.1% of family caregivers who felt they did not have enough time © 2014 Wiley Publishing Asia Pty Ltd

for themselves because they spent time with their relatives with disability (Table 2). Factor II: The Inadequacy subscale included two reversed questions, # 20 and 21. The scores of Inadequacy subscale ranged from 0 to 8. Family caregivers felt that they had a high level of inadequacy (M = 4.56; SD = 2.01) (Table 1). For example, in response to question # 20 ‘Do you feel you should be doing more for your relative?’, 72 (36.9%) family caregivers answered ‘sometimes’, 47 (24.1%) answered ‘frequently’ and 39 (20%) answered ‘always.’ The total of these three groups is 81% of the family caregivers who felt that they should be doing more for their relatives with disability (Table 2). Factor III: Embarrassment/Anger subscale included three questions, # 4, 5 and 6. The scores of Embarrassment/Anger subscale ranged from 0 to 9. Family caregivers felt a very low level of embarrassment or anger (M = 2.29; SD = 2.07) (Table 1). For example, in response to question # 4, ‘Do you feel embarrassed over your relative’s behavior?’, 81 (41.3%) family caregivers answered ‘never’ and 57 (29.1%) answered ‘rarely.’ The total of these two groups is 70.4% of the family caregivers who did not feel embarrassed over the behaviour of their relative with disability (Table 2). Factor VI: The Dependency subscale included three questions, # 1, 8 and 14. The scores of the Dependency subscale ranged from 0 to 12. Family caregivers felt that care receivers had a medium level of dependency (M = 5.87; SD = 2.58) (Table 1). For example, in response to question # 1, ‘Do you feel that your relative asks for more help than he/she needs?’, 75 (38.7%) family caregivers answered ‘sometimes’, 22 (11.3%) ‘frequently’ and 8 (4.1%) ‘always’. The total of these three groups is 54.1% of the family caregivers who felt that their relative with disability asked for more help than he/she needed (Table 2). Factor V: The Loss of Control subscale included four questions, # 16, 17, 18 and 19. The scores of the Loss of Control subscale ranged from 0 to 14. Family caregivers felt a very low level of loss of control (M = 4.09; SD = 3.06) (Table 1). For example, in response to question # 16, ‘Do you feel that you will be unable to take care of your relative much longer?’, 120 (60%) family caregivers answered ‘never’ and 42 (21%) answered ‘rarely.’ The total of these two groups is 81% of the family caregivers who did not feel unable to take care much longer of their relative with disability (Table 2). Overall, the total scores of the ZBI ranged from 6 to 65.

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Table 2 The description of Zarit Burden Interview scale Question

Never n (%)

1. Do you feel that your relative asks for more help than he/she needs? 2. Do you feel that because of the time you spend with your relative that you don’t have enough time for yourself? 3. Do you feel stressed between caring for your relative and trying to meet other responsibilities for your family or work? 4. Do you feel embarrassed over your relative’s behaviour? 5. Do you feel angry when you are around your relative? 6. Do you feel that your relative currently affects your relationships with other family members or friends in a negative way? 7. Are you afraid what the future holds for your relative? 8. Do you feel your relative is dependent on you? 9. Do you feel strained when you are around your relative? 10. Do you feel your health has suffered because of your involvement with your relative? 11. Do you feel that you don’t have as much privacy as you would like because of your relative? 12. Do you feel that your social life has suffered because you are caring for your relative? 13. Do you feel uncomfortable about having friends over because of your relative? 14. Do you feel that your relative seems to expect you to take care of him/her as if you were the only one he/she could depend on? 15. Do you feel that you don’t have enough money to take care of your relative in addition to the rest of your expenses? 16. Do you feel that you will be unable to take care of your relative much longer? 17. Do you feel you have lost control of your life since your relative’s illness? 18. Do you wish you could leave the care of your relative to someone else? 19. Do you feel uncertain about what to do about your relative? 20. Do you feel you should be doing more for your relative? 21. Do you feel you could do a better job in caring for your relative? 22. Overall, how burdened do you feel in caring for your relative?

Most family caregivers felt a low to medium level of caregiving burden (M = 28.27; SD = 11.46) (Table 1).

Correlations between ZBI and main variables In Table 3, sacrifice and strain were significantly associated with quality of relationship between family caregivers and

Rarely n (%)

Sometimes n (%)

Frequently n (%)

32 (16.5)

57 (29.4)

75 (38.7)

22 (11.3)

8 (4.1)

30 (15.2)

39 (19.7)

84 (42.4)

37 (18.7)

8 (4)

23 (11.7)

33 (16.8)

83 (42.1)

34 (17.3)

24 (12.2)

81 (41.3) 108 (54.8) 94 (48.2)

57 (29.1) 68 (34.5) 61 (31.3)

46 (23.5) 19 (9.6) 35 (17.9)

10 (5.1) 0 (0) 4 (2.1)

2 (1) 2 (1) 1 (0.5)

31 (15.8) 21 (10.6) 83 (41.9) 58 (29.3)

26 (13.3) 19 (9.6) 69 (34.8) 65 (32.8)

89 (45.4) 61 (30.8) 42 (21.2) 60 (30.3)

24 (12.2) 43 (21.7) 2 (1) 10 (5.1)

26 (13.3) 54 (27.3) 2 (1) 5 (2.5)

44 (22.3)

55 (27.9)

73 (37.1)

18 (9.1)

7 (3.6)

54 (27.4)

52 (26.4)

65 (33)

20 (10.2)

6 (3)

71 (36.4)

65 (33.3)

43 (22.1)

9 (4.6)

7 (3.6)

41 (20.7)

42 (21.2)

57 (28.8)

28 (14.1)

30 (15.2)

55 (27.8)

53 (26.8)

49 (24.7)

22 (11.1)

19 (9.6)

42 (21)

30 (15.2)

2 (1)

3 (1.5)

81 (40.9)

39 (19.7)

56 (28.3)

15 (7.6)

7 (3.5)

78 (39.4)

54 (27.3)

51 (25.8)

8 (4)

7 (3.5)

58 (29.3) 11 (5.6) 15 (7.6) 31 (15.7)

59 (29.8) 26 (13.3) 31 (15.7) 54 (27.4)

58 (29.3) 72 (36.9) 84 (42.6) 57 (28.9)

120 (60)

9 (4.5) 47 (24.1) 42 (21.3) 28 (14.2)

Always n (%)

14 (7.1) 39 (20) 25 (12.7) 27 (13.7)

care receivers (r = −0.37, P < 0.001), lack of family support (r = 0.42, P < 0.001) and patient’s ADL dependency (r = 0.33, P < 0.001). Family caregivers who lacked family support and whose patients’ ADL dependency was increasing experienced a greater sacrifice and strain. Family caregivers who had a better quality of relationship experienced lower sacrifice and strain (Table 3). © 2014 Wiley Publishing Asia Pty Ltd

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Table 3 Pearson correlation coefficients (r) of Zarit Burden Interview with main variables Variable

Sacrifice and strain

Inadequacy

Embarrassment/Anger

Dependency

Loss of control

TZBI

Psychological well-being Quality of relationship Lack of family support Caregiving knowledge Patient ADL dependency

−.14 −.37*** 0.42*** −.13 0.33***

0.08 0.31*** −0.12 0.09 0.10

−0.21** −0.45*** 0.47*** −0.26*** 0.11

−0.01 −0.21** 0.35*** 0.07 0.26***

−0.19* −0.45*** 0.27*** −0.31*** 0.18*

−0.19* −0.54*** 0.50*** −0.23** 0.31***

* P < 0.05; ** P < 0.01; *** P < 0.001 (two-tailed test). ADL, activities of daily living; TZBI, total scores of Zarit Burden Interview (total perceptions of caregivers).

Inadequacy was significantly associated with quality of relationship between family caregivers and care receivers (r = 0.31, P < 0.001) (Table 3). When the quality of relationship between family caregivers and care receivers was better, family caregivers felt they should be doing more for their relatives or they could do a better job in caring for their relatives. Embarrassment or anger were significantly associated with family caregivers’ psychological well-being (r = −0.21, P < 0.01), quality of relationship between family caregivers and care receivers (r = −0.45, P < 0.001), lack of family support (r = 0.47, P < 0.001), and caregiving knowledge (r = −0.26, P < 0.001). Family caregivers who lacked family support experienced a greater feeling of embarrassment or anger. Family caregivers who had better psychological well-being, better quality of relationship and more caregiving knowledge experienced a lower feeling of embarrassment or anger (Table 3). Dependency was significantly associated with quality of relationship between family caregivers and care receivers (r = −0.21, P < 0.01), lack of family support (r = 0.35, P < 0.001), and patient’s ADL dependency (r = 0.26, P < 0.001). Family caregivers who lacked family support and whose patients’ ADL dependency was increasing experienced a greater feeling of care receivers’ dependency. Family caregivers who had a better quality of relationship experienced lower perception of care receivers’ dependency (Table 3). Loss of control was significantly associated with family caregivers’ psychological well-being (r = −0.19, P < 0.05), the caregiver’s quality of relationship between the family caregiver and care receiver (r = −0.45, P < 0.001), lack of family support (r = 0.27, P < 0.001), caregiving knowledge (r = −0.31, P < 0.001), and © 2014 Wiley Publishing Asia Pty Ltd

patient’s ADL dependency (r = 0.18, P < 0.05). Family caregivers who lacked family support and whose patients’ ADL dependency was increasing experienced a greater loss of control. Family caregivers who had better psychological well-being, better quality of relationship and more caregiving knowledge experienced lower loss of control (Table 3). Total scores of ZBI were significantly associated with family caregivers’ psychological well-being (r = −0.19, P < 0.05), the caregiver’s quality of relationship between the family caregiver and care receiver (r = −0.54, P < 0.001), lack of family support (r = 0.50, P < 0.001), caregiving knowledge (r = −0.23, P < 0.01), and patient’s ADL dependency (r = 0.31, P < 0.001). Family caregivers who lacked family support and whose patients’ ADL dependency was increasing experienced a greater caregiving burden. Family caregivers who had better psychological well-being, better quality of relationship and more caregiving knowledge experienced a lower caregiving burden (Table 3).

Multiple regressions of ZBI with its predictors Stepwise multiple regression was used to analyse how much sacrifice and strain were predicted by the five independent variables. As shown in Table 4, the model variables accounted for 30.4% of the sacrifice and strain variance. Lower scores of quality of relationship (β = −0.18, P < 0.05), lack of family support (β = 0.35, P < 0.001) and increasing patient’s ADL dependency (β = 0.22, P < 0.001) were found to predict significantly greater feeling of sacrifice and strain (Table 4). Stepwise multiple regression was used to analyse how much inadequacy was predicted by the five independent

— — −0.37 −5.60*** 0.33 4.86*** — — 0.18 2.86** R2 = 0.43 F = 40.75*** — — −0.40 −5.79*** — — −0.18 −2.59** — — R2 = 0.24 F = 28.15*** — — — — 0.30 4.17*** — — 0.18 2.57* R2 = 0.15 F = 14.89*** — — −0.30 −4.09*** 0.32 4.53*** −0.13 −2.01* — — R2 = 0.33 F = 28.16*** — — 0.35 4.86*** — — — — 0.15 2.01* R2 = 0.128 F = 12.52***

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* P < 0.05; ** P < 0.01; *** P < 0.001 (two-tailed test). ZBI-1 Sacrifice and Strain F (df = 3, 168) = 24.43***. ZBI-2 Inadequacy F (df = 2, 171) = 12.52***. ZBI-3 Embarrassment/Anger F (df = 3, 171) = 28.16***. ZBI-4 Dependency F (df = 2, 173) = 14.89***. ZBI-5 Loss of Control F (df = 2, 174) = 28.15***. TZBI total scores of ZBI F (df = 3, 160) = 40.75***.

t

— — −0.18 −2.48* 0.35 4.88*** — — 0.22 3.32*** R2 = 0.304 F = 24.43*** Psychological well-being Quality of relationship Lack of family support Caregiving knowledge Patient ADL dependency

β t β t β t β β β

t

Inadequacy Sacrifice and strain Variable

Table 4 Multiple regressions of Zarit Burden Interview with its predictors

Embarrassment/Anger

Dependency

Loss of control

TZBI

t

Family caregiver perception

variables. The model variables accounted for 12.8% of the inadequacy variance. Increasing quality of relationship (β = 0.35, P < 0.001) and patient’s ADL dependency (β = 0.15, P < 0.05) were found to predict significantly greater feeling that they should be doing more for their relatives (Table 4). Stepwise multiple regression was used to analyse how much embarrassment or anger was predicted by the five independent variables. The model variables accounted for 33% of the embarrassment or anger variance. Lower scores of quality of relationship (β = −0.3, P < 0.001), lower scores of caregiving knowledge (β = −0.13, P < 0.05) and lack of family support (β = 0.32, P < 0.001) were found to predict significantly greater feeling of embarrassment or anger (Table 4). Stepwise multiple regression was used to analyse how much dependency was predicted by the five independent variables. As shown in Table 4, the model variables accounted for 15% of the dependency variance. Lack of family support (β = 0.30, P < 0.001) and increasing patient’s ADL dependency (β = 0.18, P < 0.05) were found to predict a significantly greater feeling of care receivers’ dependency (Table 4). Stepwise multiple regression was used to analyse how much loss of control was predicted by the five independent variables. The model variables accounted for 24% of the loss of control variance. Lower scores of quality of relationship (β = −0.4, P < 0.001) and lower scores of caregiving knowledge (β = −0.18, P < 0.01) were found to predict a significantly greater feeling of loss of control (Table 4). Stepwise multiple regression was used to analyse how consistently the total scores of the ZBI were predicted by the five independent variables. As shown in Table 4, the model variables accounted for 43% of the total scores of the ZBI variance. Lower scores of quality of relationship (β = −0.37, P < 0.001), lack of family support (β = 0.33, P < 0.001) and increasing patient’s ADL dependency (β = 0.18, P < 0.01) were found to predict a significantly greater feeling of caregiving burden (Table 4).

DISCUSSION Family caregivers’ perception Few researchers have used ZBI1 to examine the family caregivers’ perception in Taiwan. Only one study examined the validity of the Chinese version of ZBI.7 Some © 2014 Wiley Publishing Asia Pty Ltd

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researchers have used the Caregiver Reaction Assessment to examine family caregivers’ burden, such as impact on health, schedule and finances in Taiwan13,24 and in the USA.24–26 In this study, ZBI was used to examine family caregivers’ perception of caring for their relatives in the hospital. Overall, the total scores of the ZBI indicated that family caregivers felt they experienced a low to medium level of caregiving burden in this study. In the Sacrifice and Strain subscale, family caregivers felt that they experienced a medium level of sacrifice and strain. For example, 65.1% of family caregivers felt that they did not have enough time for themselves because they spent time with their relatives with disability. Most of the family caregivers (71.6%) felt torn between caring for their relative and trying to meet other responsibilities for their family or work. This means that in this study, most family caregivers felt sacrifice and strain because they were short of time and had to fill multiple roles. Yeh and Chang also indicated that Taiwanese family caregivers experienced a high level of impact on their schedules, significantly related to lack of family support and patients’ ADL dependency.13 In the Inadequacy subscale, family caregivers felt that they had a high level of inadequacy. For example, 81% of family caregivers felt that they should be doing more for their relatives, and 77% of family caregivers felt that they could do a better job in caring for their relatives. These results were related to the Chinese filial piety philosophy. Tzeng and Yin indicated that the motives of visiting a hospitalized loved one in Taiwan included fulfilling one of their responsibilities, coming to help voluntarily, showing filial piety for their parent and being afraid that the patient could not obtain appropriate care.25,27 The family involvement culture in Taiwan might have placed pressure on family caregivers to stay in the hospital or hire a labourer to take care of their relatives if they themselves were busy. Family caregivers felt the need to stay in the hospital to take care of their ill relatives, even though nurses provided total care for patients; their reasons included that (i) the family can provide physical, psychological and spiritual support to patients, thereby facilitating recovery; (ii) nothing can replace a warm family relationship; (iii) taking care of parents is the children’s responsibility; (iv) family caregivers want to make sure everything is going well.13 In the Embarrassment/Anger subscale, family caregivers felt that they had a very low level of embarrassment or anger. For example, 70.4% of family caregivers did not © 2014 Wiley Publishing Asia Pty Ltd

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feel embarrassed over their relatives’ behaviours. About 89.3% of family caregivers did not feel angry when they were around their relatives. The results are very similar to the results of Yeh and Bull’s study in 2009. They examined the spiritual well-being of family caregivers and explored the relationships of coping, spiritual well-being and mental health of family caregivers for elders who were recently hospitalized with heart failure in the USA.24,25 More family caregivers (54%) felt ‘nervous’ and ‘sad, blue’ than felt anger (26%) when they provided care for their relatives.24 In general, family caregivers in the USA in Yeh and Bull’s study had good mental health.24 Hou et al. explored the family caregiver burden of schizophrenia patients in Taiwan and indicated that caregiving anxiety scored highest on the burden dimensions, whereas caregiving anxiety scored lowest on stigmata (e.g. feeling shame).28 Their results were similar to the results of this study. In the Dependency subscale, family caregivers felt that care receivers had a medium level of dependency. For example, 54.1% of family caregivers felt that their relatives asked for more help than they needed. Most family caregivers (79.8%) felt that their relatives were dependent on them. The findings are similar to other results reported in the literature.13,28 Care receivers’ dependency is associated with their diagnosis. For example, patients with stroke,29 chronic illness,13 dementia,2 sensory impairment30 or schizophrenia28 have high ADL dependency levels. In the Loss of Control subscale, family caregivers felt a very low level of loss of control. For example, 81% of family caregivers did not feel that they would be unable to take care of their relative much longer. About 60.6% of family caregivers did not feel they had lost control of their lives since their relatives’ illness. Loss of control is a very important dimension of family caregiver burden, because family caregivers who lose control have a high tendency to abuse care receivers or themselves. Yan and Kwok examined the prevalence and risk factors for elder abuse in older Chinese with dementia by their family caregivers in Hong Kong. They reported that 62.18% of the family caregivers had verbally or physically abused the care receivers in the past month. The risk factors of abusive behaviours included family caregivers who spent more days co-residing with care receivers, lacked any assistance from a domestic helper, observed more agitated behaviours in the care receivers and/or experienced a higher level of caregiver stress.31

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Predictors of Family Caregivers’ Perception Quality of Relationship and family caregiver perception In this study, the quality of relationships between family caregivers and care receivers had significant negative correlations with sacrifice and strain, embarrassment/anger, loss of control and the total scores of the ZBI, as well as having a significant positive correlation with inadequacy. The results indicated that when family caregivers had a better quality of relationship with care receivers, they felt a lower level of family caregiver burden, including sacrifice and strain, embarrassment/anger, loss of control and the total scores of the ZBI. These same family caregivers also showed an increased feeling that they wanted to provide a better service for their ill relatives. This result is similar to other results reported in the literature.13,24,26,32,33 These studies also indicated a significant negative relationship between the quality of relationship and family caregiver burden, but Yeh’s studies of family caregiver burden focused on impact on health, schedule and finances; they did not examine the deep feeling of caregiving as sacrifice and strain, embarrassment/anger, loss of control and inadequacy.33 In addition, when family caregivers had higher scores of sense of coherence, they felt a lower level of isolation, disappointment and negative emotion.34,35 The traditional culture of filial piety influences the quality of the relationship between family caregivers and care receivers.10 It also keeps families harmonious and cohesive, and prevents older parents from being abandoned.10 At any rate, the quality of the relationship between family caregivers and care receivers is associated with the family caregivers’ health, schedule and finances.13,24,26 Therefore, 43 (21.8%) family caregivers hired a labourer to help take care of their relatives in the hospital to decrease the negative impact on their schedule and health.13

Family support and family caregiver perception The results of the study indicated that lack of family support had a significant positive correlation with family caregivers’ perceptions, including sacrifice and strain, embarrassment/anger, dependency and the total scores of ZBI. The findings are similar to other results reported in the literature.13,26,33 The current study reinforces the idea that lack of family support is an important predictor of

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family caregivers’ perception of burden. High burden was associated with the caregiver’s report of need for greater help with daily tasks, but not with objective measures of the patient’s need for assistance, such as symptoms or functional status.35,36 Modern Taiwanese families address the need for greater help in several ways. Chen indicated that in Taiwan, most elderly people hope to live with their children, who believe that caring for their parents is an act of being filial and is a reciprocation of their parents’ care. Although the expectation of reciprocal filial caregiving still prevails, the modern care model has changed—from children taking care of their elderly parents in person in the past, to children employing foreign caregivers or purchasing home care today.10 Paying for care has become a new way to be filial and relieve family caregiver burden when caregivers lack family support.10,35

Caregiving knowledge and family caregiver perception Family caregivers’ knowledge about caregiving was a significant predictor of feeling embarrassment/anger and loss of control. Family caregivers with increasing caregiving knowledge experienced lower perception of embarrassment/anger and loss of control in this study. The result is similar to other results reported in the literature.24,33,37 In addition, if family caregivers felt very confident in their knowledge of how to take care of the patient at home, they were less likely to suffer from depressive distress.37–39 Psychosocial intervention might decrease the perception of burden. Andrén and Elmståhl developed a psychosocial intervention to decrease family caregiver burden. Caregivers who underwent the psychosocial intervention (5-week programme and 3-month conversation group) reported significantly lower strain and disappointment after 6 months, and this trend persisted after12 months.40

Patients’ ADL dependency and family caregiver perception In this study, the care receivers’ ADL dependency was a significant predictor of family caregivers’ sacrifice and strain, inadequacy, dependency, and total scores of ZBI. When care receivers had higher ADL dependency, family caregivers felt more sacrifice and strain, and also felt they should provide better care for care receivers. This finding is consistent with other studies in the literature.13,33 A higher level of care receivers’ ADL dependency has a © 2014 Wiley Publishing Asia Pty Ltd

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negative impact on family caregivers’ schedules, for example, visits to family and friends and time for relaxation,13,33 as well as a negative impact on family caregivers’ health status.13

show differences that would shed even more light on both studies by comparison, especially with regard to those cultural differences.

Relevance to clinical practice Psychological well-being and family caregiver perception In this study, the psychological well-being had significant negative correlations with embarrassment/anger, loss of control and the total scores of ZBI, but it was not a significant predictor of family caregiver perception. When family caregivers had higher scores on psychological wellbeing, they had lower scores of embarrassment/anger, loss of control and the total scores of the ZBI. The length of family caregivers’ experiences and the patients’ diagnosis might be important factors influencing the relationship between family caregivers’ psychological well-being and their perception of caregiving burden.2,13,41 Few studies have reported the relationship between family caregivers’ psychological well-being and their perceptions, including embarrassment/anger, loss of control and the total scores of the ZBI.

Nurses might use the ZBI to assess family caregivers’ perception. The important areas to assess include the older persons’ ADL dependencies, quality of family caregiver/care receiver relationship, availability of family support and family caregivers’ caregiving knowledge in planning for hospital discharge.

ACKNOWLEDGEMENTS The authors would like to thank Shin Kong Memorial Hospital in Taiwan and Ms Meizen Huang for assistance in data collection and key-in data. We thank the families who participated.

Funding This research received no specific grant from any funding agency in the public, commercial or not-for-profit sectors.

Conflict of interest Limitations This study has three limitations that are important to consider in relation to the findings and implications for future research. First, the cross-sectional design does not provide insights on the differences of the family caregiver perception over time from hospital to community. Second, the sample was recruited from a Taiwanese hospital, so the generalizability of this study is limited. Third, the participants in this study were voluntary, so the results of this study can be used only among a population of caregivers who are willing to share their experiences.

CONCLUSION The findings of this study support the ZBI instrument with good reliability to examine the perception of family caregivers. The findings also provide insights on the importance of comprehensive assessment of stressors such as family caregivers’ perception, patient’s ADL dependency, family support and the quality of the caregiver/care receiver relationship. Further research is needed to test the theoretical framework’s utility for family caregivers in the USA who are caring for relatives with chronic illness, cancer and stroke. Such a study in American culture might © 2014 Wiley Publishing Asia Pty Ltd

No conflict of interest has been declared by the authors.

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