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Keywords:

  • caregivers;
  • case–control studies;
  • community nursing;
  • physically disabled;
  • Thailand

Abstract

  1. Top of page
  2. Abstract
  3. Introduction
  4. Methods
  5. Results
  6. Discussion
  7. Conclusion
  8. Acknowledgements
  9. References

This case–control study compares the health of Thai family caregivers of adults with acquired physical disabilities with others without similar responsibilities. To ascertain health perceptions, face-to-face structured interviews using the Short Form (36) were conducted with participants randomly selected from primary care units in eastern Thailand (150 in each group). Despite similar sociodemographic profiles, caregivers reported more health problems and harmful health behaviours. Mean scores for physical and mental health were significantly lower. Factors contributing to poorer health among both caregivers and controls were older age, low educational level, insufficient income and existing health problems. Additional factors for caregivers were gender, spousal or in-law relationship, high dependency, long caregiving time, lack of previous experience and other caregiving responsibilities. This study identifies an urgent need for support to promote caregivers' health to enable them to maintain their vital role.


Introduction

  1. Top of page
  2. Abstract
  3. Introduction
  4. Methods
  5. Results
  6. Discussion
  7. Conclusion
  8. Acknowledgements
  9. References

Middle-income or developing countries have a high proportion of people with acquired physical disabilities compared with developed nations.[1] Inadequate formal support services in such countries result in poorer living conditions and greater dependence of disabled people on self-care or families.[2] In 2006 the UN adopted the Convention on the Rights of Persons with Disabilities to provide global direction for this vulnerable group. Further UN action in 2010 revised the Millennium Development Goals to acknowledge the needs of disabled people and give strategic direction to developing countries.[3] In response, these countries have turned their attention to promoting community-based care to meet the needs of disabled people.

Thailand is an example of a developing country where the number of adults with acquired physical disabilities has increased dramatically due to an ageing population and increased incidence of chronic disease and acquired injuries.[4] Thailand has limited health resources for physically disabled adults; there are few long-term care facilities, and professional community care is limited. Consequently, family members (95%) provide almost all care to disabled people, especially in rural areas.[5] Caring for an adult with reduced mobility entails many responsibilities that must be accommodated alongside normal family duties. The unanticipated nature of an additional caregiving burden can lead to further physical strain and mental stress.[6-8] The health of caregivers is likely to have significant implications, not only for the caregivers themselves, but also for their capacity to provide ongoing care. Unlike in developed countries,[9] there are no specific policies and practices addressing the needs of caregivers, despite their central role in care provision. Also, in developing countries few studies have focused on the health of caregivers. The aim of this paper is to report the findings of a study that compared the health of Thai family caregivers of adults with acquired physical disabilities with others without similar responsibilities. These findings will inform a larger study that aims to develop caregiver support.

Methods

  1. Top of page
  2. Abstract
  3. Introduction
  4. Methods
  5. Results
  6. Discussion
  7. Conclusion
  8. Acknowledgements
  9. References

A case–control study design was used, with both caregiver cases and community controls randomly sampled. The study was approved by the La Trobe University ethics committee, the chief officer of the Thai district and the director of a community hospital that facilitated recruitment through its community health centres. It was conducted in a traditional rural area in eastern Thailand where people work as farmers in fruit orchards or shrimp farms, as seamen and in tourist industries.

Participants

Caregiver cases were defined as primary caregivers who were adults (18 years or older) providing the majority of unpaid care in the home and community for at least 6 months for an adult relative with an acquired physical disability. Disabilities could result from stroke; chronic diseases, such as arthritis or diabetes; or acquired injuries from traffic or industrial accidents or falls in the elderly. The control group comprised adults from the same community without physical disability who had not provided care for anyone with a physical disability. The sample size was calculated to detect a difference of 33% [10] between the Medical Outcomes Study Short Form (36) Health Survey (SF-36) summary scores of the two groups (caregiver cases and community controls), with power set at 0.80 and significance level of α = 0.05. The final sample consisted of 150 caregivers and 150 controls.

Two community nurses identified potential cases and controls from the community hospital database. The database records all users of the seven community health centres attached to the community hospital, including information about: age, whether someone has a physical disability, if he or she is a caregiver of someone with a physical disability, and length of time in this role. The community nurses imported information from the database into Microsoft Excel files and then into spss/fw version 18 (SPSS Inc, Chicago, IL, USA) and compiled random samples of caregiver cases and community controls based on the study criteria. A researcher established initial contact with potential participants in their homes through village health volunteers. Potential participants were informed about study aims and types of questions they would be asked. If willing to participate, they signed a consent form (or made their mark with a fingerprint if they could not read or write). To ensure anonymity the data recorded no identifiable information.

Measures

The health of caregivers and non-caregivers was ascertained through self-report in two ways. First, participants were asked about existing health problems and specific behaviours over the last 6 months. This included any history of chronic disease and management, as well as questions about exercise, food consumption and sleep patterns, frequency of health check-ups, and tobacco and alcohol use.

Second, the Thai version of the SF-36[11] was used to ascertain perceptions of health and well-being over the preceding four weeks. The survey comprises eight subscales that are aggregated into two summary scores: the Physical Component Summary score (PCS) and the Mental Component Summary score (MCS). The sums of the subscale scores are converted and reported (range 0–100, with higher values indicating better health).[12] The summary scores (PCS and MCS) rely on population norm-based scores, but currently available Thai norm-based scores were derived from people with high levels of literacy (university students) with restricted age data (median age = 30–31 years).[13, 14] As such they were unsuitable for our study population, but as we had a control group, we were able to use US population data, which covers broader age ranges.

Data collection

Between June and August 2011, a researcher (WL) and five trained research nurses collected data. To overcome concerns about low literacy in the Thai population,[4] face-to-face structured interviews were conducted in the participants' homes. Besides exploring health status and behaviours, caregivers were also asked about their caring experiences. Interviews averaged 15 min for the control group and 45 min for caregivers.

Data analysis

All quantitative data were imported into spss/fw version 18. Descriptive statistics were calculated for all items. Odds ratios (OR) with 95% confidence intervals (CI) were calculated for dichotomous outcomes, and independent t-tests, F-tests and bivariate correlations were performed for continuous data to compare groups.

Results

  1. Top of page
  2. Abstract
  3. Introduction
  4. Methods
  5. Results
  6. Discussion
  7. Conclusion
  8. Acknowledgements
  9. References

Study population

Caregiver cases and community controls were similar in terms of age, gender, marital status, educational attainment and reported income. Females comprised the majority of both groups (77%). People in the control group were nearly three times more likely to be in paid employment compared with caregivers (see Table 1).

Table 1. Characteristics of caregiver cases and community controls and comparison of their health problems and behaviours
CharacteristicsCaregivers (n = 150)Controls (n = 150)Odds ratio (95% CI)
  1. t-Score = 0.82 (P = 0.410).  Three with highest prevalence reported. Data are given as n (%) unless otherwise indicated. CI, confidence interval.

Age (years)   
Mean (SD)51.4 (13.8)50.8 (13.2)
Range19–8220–80
Gender   
Male34 (23)35 (23)Reference
Female116 (77)115 (77)1.04 (0.6, 1.8)
Marital status   
Single/widowed/divorced40 (27)36 (24)Reference
Married and living together110 (73)114 (76)0.87 (0.5, 1.5)
Highest education level   
High school/above40 (27)50 (33)Reference
None/primary school110 (73)100 (67)1.32 (0.8, 2.2)
Employment status   
Employed95 (63)124 (83)Reference
Unemployed55 (37)26 (17)2.76 (1.6, 4.7)
Family income status   
Insufficient69 (46)66 (44)Reference
Sufficient81 (54)84 (56)0.92 (0.6, 1.5)
Major health problems   
No65 (43)85 (57)Reference
Yes85 (57)65 (43)1.71 (1.1, 2.7)
Type of major health problem   
Hypertension40 (47)25 (38)1.82 (1.0, 3.2)
Back pain or osteoarthritis27 (32)21 (32)1.35 (0.7, 2.5)
Diabetes12 (14)6 (9)2.09 (0.8, 5.7)
Problems managing health issue   
No50 (59)42 (65)Reference
Yes35 (41)23 (35)1.28 (0.7, 2.2)
Lack of time27 (77)15 (65)
Lack of awareness8 (23)8 (35)
Regular exercise at least three times a week   
No111 (74)75 (50)Reference
Yes39 (26)75 (50)2.85 (1.8, 4.6)
Problems with sleeping   
No69 (46)85 (57)Reference
Yes81 (54)65 (43)1.54 (1.0, 2.4)
Daily tobacco smoking   
No127 (85)135 (90)Reference
Yes23 (15)15 (10)1.63 (0.8, 3.3)
Drinks alcohol at least once a week   
No126 (84)123 (82)Reference
Yes24 (16)27 (18)0.87 (0.5, 1.6)
Problems with appetite   
No138 (92)142 (95)Reference
Yes12 (8)8 (5)1.54 (0.6, 3.9)
Regular 6-month check-up   
No67 (45)65 (43)Reference
Yes83 (55)85 (57)1.06 (0.7, 1.7)

Caregiving experience

Most caregivers indicated that caring for someone with a physical disability comprised tasks that were frequent (90% provided care everyday), time-intensive (more than 12 h per day) and long-term (median = 5 years). Care recipients were older (t = 6.07, P < 0.001) and more likely to be male compared with caregivers (OR = 3.7; 95% CI 2.2, 6.1). Most caregivers lived with care recipients (87%) or within a kilometre (13%). More than half of all caregivers had some form of blood relationship with their care recipient (58%); they were an adult child, parent, grandchild, grandparent or sibling. Spouses comprised nearly one-third of all caregivers (31%). The remainder were related by marriage in some way; most commonly this group included daughters-in-law of the care recipients (11% of all caregivers). Only a minority of caregivers had previous caregiving experience (21%). More than one in four caregivers also had other current caring responsibilities (27%). Most care recipients needed mobility assistance or had high dependency levels (measured in terms of activities of daily living; 64%), had comorbidities (59%) and/or required special equipment (51%).

Prevalence of health problems and health behaviours

The majority of caregivers reported health problems (57%) and were more likely to do so than controls. Caregivers who reported health problems (n = 85) were also more likely to report difficulties in managing them compared with people with health problems in the control group, due to lack of time. Several poor health behaviours were commonly reported. Caregivers were almost three times more likely to report lack of exercise and were also more likely to smoke and to have problems sleeping (see Table 1).

Perceived health status

The Thai version of the SF-36 demonstrated high internal consistency across subscales (Cronbach's alpha ranged from 0.85 to 0.89) when originally used.[11] In this study, Cronbach's alpha was lower but acceptable (range 0.75 to 0.81). Caregivers scored lower than controls for all subscales, although this difference was not significant for two subscales: bodily pain and social functioning. Caregivers had significantly lower mean scores in both SF-36 composite subdomains, physical health and mental health (see Table 2).

Table 2. Short Form (36) subscale scores and Physical and Mental Component Summary scores for caregiver cases and community controls
Health statusScoresMean difference (95% CI)t-test
Caregivers (n = 150)Controls (n = 150)
RangeMean (SD)RangeMean (SD)
  1. * P < 0.05; ** P < 0.01; *** P < 0.001.  Physical and Mental Component Summary scores reported as norm-based scores. CI, confidence interval; NS, not significant.

Physical functioning5–10076.4 (23.7)0–10081.3 (20.8)4.9 (0.9, 1.0)2.05*
Role—physical0–10071.7 (29.1)12–10081.2 (21.3)9.5 (0.8, 1.0)3.24**
Bodily pain0–10060.1 (29.2)10–10063.3 (23.3)3.2 (0.9, 1.1)NS
General health0–10050.6 (28.3)15–10064.3 (21.3)13.7 (0.7, 0.9)4.72***
Vitality0–10056.1 (21.3)25–10066.3 (16.0)10.2 (0.8, 0.9)4.67***
Social functioning0–10079.9 (20.8)12–10081.3 (21.2)1.4 (0.9, 1.0)NS
Role—emotional17–10076.0 (23.5)25–10082.7 (20.8)6.7 (0.9, 1.0)2.85**
Mental health10–10064.4 (19.0)30–10075.7 (16.0)11.3 (0.8, 0.9)5.55***
Physical Component Summary15.5–70.945.6 (11.7)14.7–62.847.9 (8.3)2.4 (0.9, 1.0)2.05*
Mental Component Summary19.1–64.546.1 (9.9)21.5–63.950.6 (8.0)4.58 (0.9, 1.0)5.55***

Factors related to perceived health status

Although caregivers perceived their physical and mental health to be worse than did the control group, common factors contributed to lower physical and mental health status scores for both caregivers and community controls. Shared poor health perceptions were associated with reported health problems and older age. Poor physical health was also associated with low educational level, and poor mental health was associated with insufficient income in both groups (see Table 3).

Table 3. Factors associated with Short Form (36) Physical and Mental Component Summary scores for caregiver cases and community controls
FactorsCaregivers (n = 150)Controls (n = 150)
PhysicalMentalPhysicalMental
  1. * P < 0.05; ** P < 0.01; *** P < 0.001.  None/primary school.  More than 12 h per day. NS, Not Significant.

Participant characteristics    
Older age (r)−0.599***−0.195*−0.392***−0.190*
Female gender (t)2.669**NSNSNS
Low educational level (t)4.049***NS2.299*NS
Insufficient income (t)NS2.173*NS2.653**
Health problem?    
Yes (t)−6.857***4.321***5.946***2.250*
Context of caregiving    
High dependency (r)0.187*0.232** 
No experience (t)1.996*3.095**
Other caregiving role (t)1.945*NS
Spouse (F)4.305*
Daughter/parent-in-law (F)9.322***
Long caregiving hours (t)NS2.382*

Additional factors affected negative perceptions of health status among caregivers. Both physical and mental health status were lower among those caregivers who reported high dependency on the part of care recipients or had no previous caregiving responsibility. Physical health status was also lower in female caregivers with a spousal relationship to care recipients or who had other caregiving responsibilities. Mental health status was also lower among caregivers who were daughters- or parents-in-law of care recipients and those who reported long hours of daily caregiving (more than 12 h, see Table 3).

Discussion

  1. Top of page
  2. Abstract
  3. Introduction
  4. Methods
  5. Results
  6. Discussion
  7. Conclusion
  8. Acknowledgements
  9. References

This study establishes the poorer health status of Thai family caregivers of adults with physical disabilities and raises questions about harmful health behaviours. More importantly, it provides evidence of the health impact of providing care on caregivers. This has important implications for health-care policy and practice in Thailand and in similar countries with high dependence on caregivers and where caregiver needs are largely unrecognized. Earlier comparison studies in developing countries found caring for people with a physical disability impaired health-related quality of life, but outcomes were not directly linked to the experience of caregiving.[15, 16] We found only two previous studies that compared the health of caregivers of physically disabled people with others, although neither study used a control group; both relied on population scores.[17, 18] Both studies linked poorer health with caregiving, but neither extended as far as to investigate the practical aspects of the caregiving role.

Caregiver characteristics, health problems and health behaviours

Although we found caregivers and controls did not differ in terms of age, level of education or assessments of income sufficiency, caregivers reported health problems more commonly, especially hypertension. This raises the question whether people with existing health problems are more likely to become caregivers or whether caregiving contributes to perceptions of poorer health. Our study provides evidence of caregivers neglecting their own health through inadequate sleep or lack of exercise, supporting similar earlier findings.[19, 20] Other studies have identified poor health behaviours among caregivers. US rural caregivers were less likely to take adequate time for recuperation, take prescription medications or eat fruit and vegetables regularly.[21] UK caregivers reported missing meals or hospital treatment because of their caring responsibilities.[22] The implications for community nursing suggest a need to encompass health-promoting strategies for caregivers when providing care to people with physical disabilities.

Context of caregiving

We identified three components related to the context of caregiving to be important to caregiver health. First, the impact of caring on caregivers is impossible to separate from the needs of those receiving care. We focused on caregivers of adults with physical disabilities and found both physical and mental health were more likely to be adversely affected when care recipients had high levels of dependency.[23] Although this might appear self-evident, similar correlations were not found in earlier studies.[17, 24] This difference might be due to different patient populations or the level of support available to caregivers. Patients in these earlier studies were more homogeneous, whereas we involved people caring for others with a heterogeneous mix of physical disabilities, most with high to severe levels of dependency. There is also considerable variation in caregiver support environments. Our study was conducted in a country with few resources to support caregivers.

Second, the capacity of caregivers is an important consideration when planning nursing interventions. Taking on caregiving for an adult with a physical disability often comes without warning, and we found most caregivers were unprepared for their caregiving role, had little or no previous experience and retained existing family caregiving demands. These issues contributed negatively to caregiver physical and mental health. New caregivers do not know what to expect, how to adjust to their new role or even whether they possess the emotional and physical strength to cope.[25] These are critical factors to take into account in community nursing, particularly in developing countries where caregivers have little choice about taking on the role. A common strategy in developed countries is to assess the practical support needs of new caregivers.[9] This translates to short-term caregiver respite and financial compensation, although the chronic nature of caregiving can still be overlooked.[26, 27]

The third important component of the caregiving context is the nature of the society in which it occurs. We identified three specific interrelated cultural factors that need to be considered for Thailand: the role of women, the nature of the relationship between caregiver and care recipient, and time spent providing care. The gendered nature of caregiving is not unique to Thailand, but unlike a Spanish study with a similar majority of female caregivers,[28] we did not find both physical and mental health to be at greater risk. Our findings for physical health were similar, but we found mental health to be a risk factor only for daughter-in-law caregivers. Similarly to other Eastern countries,[29-31] there are high social expectations in Thailand for females to take primary caregiving responsibility. Kinship ties might contribute to cultural acceptance of this female role and offer some emotional protection, but our study suggests this might not extend to daughters-in-law in contemporary Thailand. We could find no studies that looked at this particular group.

Long hours spent on caregiving tasks are likely to exacerbate perceptions of burden,[32] and we found poorer mental health among caregivers who reported long days of care provision (more than 12 h per day) (nearly one-third of caregivers in the study). This is consistent with previous Thai studies that demonstrated long caregiving hours[33, 34] and highlights a key issue arising from lack of recognition of the impact of caregiving. The absence of caregiver policies and the economic constraints within Thailand mean disability services are scarce and caregivers rarely supported. Other aspects of Thai culture might also contribute, as Thai people, particularly those of Buddhist faith, feel great pity and shame when people suffer loss of function or altered appearance—a frequent consequence of an acquired physical disability—and this can discourage interaction with people outside the family.[35] Caregiver strategies should be cognizant of both supportive and unsupportive aspects of the local cultural environment.

Limitations of the study

The main study limitation was that it was not possible to blind data collection. Interviewers knew whether participants were caregivers or in the control group. The study also used participants' self-assessments, with health status measured with a validated and reliable standard tool, the SF-36, although this posed another limitation, the absence of appropriate Thai norm-based scores. The study included 300 randomly selected people including a control group, which gave adequate power to detect real differences between the groups. The inclusion of a control group should address concerns about the derived scores. The use of US population data also enables comparison with studies from other countries.

Conclusion

  1. Top of page
  2. Abstract
  3. Introduction
  4. Methods
  5. Results
  6. Discussion
  7. Conclusion
  8. Acknowledgements
  9. References

This is the first comparative study of the health status of caregivers of adults with acquired physical disability in a developing country that uses a randomly selected control group from the same community. As such, it provides the strongest evidence to date that caregivers of adults with acquired physical disability have poorer health status. We were able to ascertain the potential impact of caregiving and identify some important areas of risk for caregivers. Supportive strategies are required to improve the health and well-being of caregivers and the quality of care they provide. In the long term this emphasis could reduce health-care costs if caregivers remain healthy. In practice, community nurses are key to the development and management of local caregiver support services that meet caregiver needs. Nursing interventions should emphasize an inclusive approach to program delivery and consider community services available for patients and caregivers. Based on these findings, further research is required to develop and evaluate appropriate interventions that prepare and support caregivers in their pivotal caregiving role.

Acknowledgements

  1. Top of page
  2. Abstract
  3. Introduction
  4. Methods
  5. Results
  6. Discussion
  7. Conclusion
  8. Acknowledgements
  9. References

We would like to thank the family caregivers and controls who willingly participated in this study. Our thanks also go to all the community nurses and village health volunteers who worked with the study participants. We are indebted to the five research nurses who helped collect data.

References

  1. Top of page
  2. Abstract
  3. Introduction
  4. Methods
  5. Results
  6. Discussion
  7. Conclusion
  8. Acknowledgements
  9. References