Strength and stress: Positive and negative impacts on caregivers for older adults in Thailand

Abstract

Aim

To understand the experiences of caregivers with older people living in Thailand, particularly as related to quality of life and stress management.

Method

In‐depth interviews with 17 family caregivers were conducted and then data were thematically analysed.

Results

Carers experience not only negative impacts but also positive impacts from caregiving. Negative impacts include emotional stress, financial struggles and worry due to lack of knowledge. Positive impacts include affection from care recipients, good relationships with caregivers before needing care themselves and encouragement from the wider community. Opportunities to show gratitude, build karma (from good deeds) and ideas shaped largely by Buddhist teachings result in positive experiences. Negotiating between the extremes of bliss and suffering and understanding suffering as a part of life may help carers manage their stress.

Conclusions

Temples and centres for older people could be engaged to develop caregiving programs.

Introduction

Demographically, Thailand is already an aged society. In 2015, the number of people aged 60 or older will reach 10.3 million, or 15.8% of the country's total population. Thailand's percentage of older adults is expected to more than double by 2040, when it is projected to reach 32.1% [1]. As their abilities decline, older people may need assistance in the activities of daily living, such as eating, dressing or using the bathroom. Some will seek the aid of a caregiver, who is usually a relative, as is the case in both Western society and Thailand [2, 3]. In the future, caregiving by children may be increasingly rare due to migration of adult children, particularly from rural to urban areas, and the rapid decline in fertility in Thailand. Currently, Thai women have 1.6 children on average, as compared to 6.1 in 1968, and it is expected to decline further [1, 4]. Thus, there is a need for caregiving information to inform policies, interventions and education.

Caregiving can be demanding and time consuming, usually without financial compensation. Relatives caring for older adults may have additional responsibilities, such as working or looking after other family members. These multiple and potentially conflicting obligations can cause stress, ill health and an increased risk of mortality [5, 6]. It is common for caregivers to experience what scholars call ‘carer burden’, the belief that current and future resources (emotional, physical, social, financial) cannot meet the role demands of caregiving [7, 8]. Greater caregiving burden has been linked to higher assistance provision with activities of daily living (ADLs) and instrumental activities of daily living (IADLs) [9], as well as cognitive caregiving impairment [7].

While academic inquiry tends to focus on caregiver stress or burden, there is growing interest in understanding the positive aspects of the experience [7, 10, 11, 12, 13]. Participants in the Australian study [7], for example, reported high levels of burden, but they also indicated satisfaction in the caregiving role, which had become an important part of their identity. Caring for others can uplift a caregiver's well‐being [12], and help people gain a sense of self‐efficacy, the perceived ability to successfully manage the demands of a situation [10]. Other personal rewards include increased companionship, love, affection, pride and purpose. The presence of positive aspects in these realms might buffer the negative aspects of caregiving [11, 13].

Coping strategies also contribute to people's experiences of caregiving. Religious coping is one type of strategy that many groups use in times of stress [14]. While research has identified positive and negative religious coping patterns, people tend to make more use of positive methods, turning to religion in search of security, spiritual connectedness and meaning in life [14]. However, the literature on caregiving is just beginning to explore the effect of religion in caregivers' lives [15]. In Thailand, where over 90% of the population is Buddhist, Theravada Buddhism is said to influence people's attitudes, thoughts and way of life [4]. While it has been shown that Buddhist teachings have significant effects on Thai older people's subjective well‐being [16], little is known about their impacts on the caregiving experience.

Qualitative research can help articulate the complexity of the caregiving experience and embed it within a unique cultural context [17]. Such methodology explores beliefs and understandings, complementing quantitative studies by exposing nuances that might otherwise remain hidden [18]. While numerous qualitative studies have attempted to capture the caregiving experience from a Western perspective, few have aimed to better comprehend the lived experiences of caregivers in Eastern cultures. Still fewer have focused on Thailand and carers for older adults specifically [19].

One recent qualitative investigation [20] explored the Thai caregiving experience from the perspective of the older adult. Researchers conducted focus groups with rural older adults to capture their preferences regarding from whom they would like to receive care, if and when the time comes. Ideally, older men preferred their wives for meal preparation and personal care, while older women preferred their daughters for the same responsibilities. Results reflect social norms (e.g. the value of familial responsibility and the adherence to gender roles) [20], which may shape the caregiver experience as well.

For the older adult care recipient, caregiver stress might contribute to neglect or abuse [21]. At the same time, positive feelings about caregiving have been shown to improve quality of care [11]. Thus, reducing stress and increasing the pleasure of caring for older people should be goals of programs to support caregivers, for the mutual benefit of provider and recipient.

This paper presents a qualitative analysis of data from in‐depth interviews with 17 informal family caregivers living in Kanchanaburi Province, which is situated approximately 130 km west of Bangkok. The purpose of the study was to gain a better understanding of what Thai primary caregivers (those who spent the most time on caregiving if there was more than one caregiver) consider the positive and negative aspects of caring for older adults. This information will inform future health policies, research and interventions to support caregivers in innovative and culturally relevant ways.

Method

Sample selection

Participants included 17 primary caregivers who were purposively selected based on gender and kinship to care recipients (spouse, daughter, son and in‐law) as they have been found to be associated with negative and positive aspects of caregiving [22, 23].

The research team chose participants from a larger sample of 284 family caregivers who were part of a quantitative study the researchers completed in Kanchanaburi, Thailand, in September 2011. The objective of the quantitative study was to explore the sociodemographic characteristics of primary caregivers, their perceived physical and mental health, and their coping strategies. A standardised measure of basic ADL and that of IADLs of older adults was used to identify who needs care. Caregivers were providing care to those age 50 and over with at least one ADL limitation [24] or at least two IADLs [25].

The present qualitative investigation serves as a follow‐up to the quantitative study and aims to gain deeper insight into the potential psychological factors that lead to ‘living well’ among family caregivers. The consent form was available in Thai, and provided to each participant. Additionally, the interviewer read and explained the information. All participants gave informed consent first verbally then in writing, and the study had the approval of the Institute Review Board of Mahidol University. The reference number is IORG0002101/FWA00002882.

Data collection

Interviews were semi‐structured and conducted in Thai approximately one year after the quantitative data collection period. Interviews were recorded, and notes were taken to supplement the recordings. The length of each interview ranged from one hour to one hour and a half.

Data analysis

Audio recordings of the interviews were transcribed verbatim. Thematic analysis was used [26]. Transcripts were reviewed several times before they were coded and analysed for themes. Each interview was discussed to determine themes as a team. Firstly, each author identified themes independently using an inductive approach, and then discussions for final themes were defined by the authors. The content was reviewed for similarities and differences in ideas and sorted into categories and subcategories. A brief report was made available in Thai and translated into English by the first author who is bilingual. Interpretation of data was checked and verified by the coauthors.

The key topics for each interview are shown in Table 1. The interviewers used these topics as a guide, asking follow‐up questions about issues of importance as they arose.

Table 1.

Interview guidelines

How do you feel about your caregiving? Happiness? Stress? Why? Have you ever had negative and/or positive experiences from caregiving? Do you think that caregiving is a problem or a burden? Why? How do you cope with any problems concerning your caregiving?

Results

Sample characteristics

The age of the sample of 12 women and five men ranged from 31 to 78. The median age was 55. Kinships to recipients included wives (n = 5), daughters (n = 5), husbands (n = 3), daughter‐in‐laws (n = 2), as well as one son and one son‐in‐law. Occupations of caregivers included farmers (n = 6) and private employees (n = 6). One participant worked as a government employee, while another worked as a vendor. Three did not report occupations. The 18 older adults under their care (one participant cared for both her mother and father) ranged in age from 56 to 83 (median age = 74). Majority were men (n = 10, 67%). About 61% of care receivers were functionally dependent with self‐care tasks related to ADLs, such as bathing, eating, dressing, transferring, mobility and toileting. The mean of assisted activities were 1.35. About 39% fell into the IADL categories, requiring help with such things as preparing meals, doing housework/laundry, travelling and taking medicine. The mean of assisted activities were 0.88. All were Buddhists.

Gender role expectation of caregivers

Approximately 70% of respondents affirmed traditional gender roles and expectations, while others reported variations based on personal relationships. Participants reported that women often were expected to be the primary caregivers and nurturers. A wife, herself older than 60 years old, reported:

If I get sick or injured, then it will probably be my daughter who cares for me. That's the way it is. It is the woman's role. The son is responsible more for making money. Besides, the son is probably not so good at caregiving anyway. (ID: 020407)

Participants reported that if older parents lived with their son, the son's wife typically assumed the role of caregiver. If he was not yet married, it was customary for the family to hire a female caregiver, and for the son to provide financial support and transportation. A daughter‐in‐law reported similar experiences.

But not all respondents revealed an adherence to gender expectations. A female carer explained that it should be a shared responsibility among adult siblings:

It doesn't matter if it is the son or daughter; each has an equal responsibility. If someone has good will, they can help. (ID: 020409)

Another caregiver said that she anticipated that her youngest son would care for her in the future because he had lived with her the longest, underscoring the power of individual relationships on caregiving expectations.

Impacts on the caregiver

The following themes emerged as central to the experiences of Thai caregivers for older adults.

Negative aspects

Interviews revealed that age‐related health affected the attitudes of Thai caregivers. Generally, those who were older expressed greater weariness often related to their own potential for declining health. A wife aged over 60 reported:

I am old now and get tired easily. I don't get enough rest. Having to care for my husband only increases my stress. (ID: 020407)

Participants reported feeling emotional stress from witnessing their relatives suffering, as well as from having to deal with the unpredictability of day‐to‐day life. Participants providing care to those with unpredictable mood changes, which may have been due to their illnesses and high levels of dependency, reported high levels of stress. One caregiver recalled a particularly stressful time when her husband with a high level of functional disability refused to take his medicine. She reported:

Caring for my husband for his daily needs and activities is not that stressful. It really becomes stressful when he refused to take his medicine. (ID: 060005)

Another, frustrated by what she identified as her husband's selfishness, even quit her caregiving role for a period of time.

Socioeconomic status and family size may greatly influence the experience of Thai caregivers. Both male and female participants living without financial means reported monetary struggles and little outside help (e.g. from formal services). Many juggled full‐time jobs and caregiving responsibilities. One husband found caring for his wife to be draining at times because he was already tired from working the family's sugar cane fields. Many explained hurrying back home during lunch breaks and after work to check on ailing loved ones. Carers with other family members in the household or living nearby, however, reported more relief from this stress. Having additional people ‘united in their priorities’, as one respondent said, shared the burden.

Another worry for caregivers may be lack of knowledge about the illness or condition at hand. Many caregivers are not sure what ‘complete care’ consists of, said one participant, who feared that his unfamiliarity with his father's diagnosis may have made the situation worse.

In the face of caregiver stress and burden, some participants identified Buddhist teachings as providing perspective and insight. One carer explained:

We cannot expect total bliss in all aspects of life. We should expect some suffering to go along with the good times. The important thing is not to become obsessed with either. If we can eliminate a source of suffering, that is great. But if we hold onto it, it just multiplies the suffering. What's the use in dwelling on it? (ID: 060200)

Thai lay people tend to adhere to the Buddhist notion of seeking a path of moderation between two extremes [4, 16], an idea that this participant related to caregiving.

Positive aspects

Religiously, filial piety is a Buddhist way of repayment for the parent's kindness. The six adult children in this sample cited katanyu, or gratitude, in their understanding of their role as a caregiver. All children said they felt inner pleasure by showing katanyu to their parents. In the words of one daughter:

The first priority in my heart is to show gratitude to my parents because they cared for me when I was young and raised me into adulthood. We have to return this kind sacrifice by caring for them now. (ID: 061210)

One son expressed this sentiment even more strongly in this belief:

Just thinking that looking after parents is a burden is wrong. It's a duty of children. Those who cannot do it should not be born as human beings. (ID: 060214)

Other Buddhist teachings, such as karma, can shape caregivers' understanding of their role and, in turn, their feelings about it. Participants reported that Buddhist belief held that they were repaying the debt of gratitude to their parents, and that they would reap the benefits of their good deed (karma) of caring. One daughter caring for her father explained:

I've considered my own situation. What if I am older and need care? Who will provide that? I believe in karma. What goes around comes around. Sometimes it is hard to explain. All I can say is that what I have done so far brings me happiness and pride. (ID: 060012)

Receiving encouragement and affection from care recipients can also be a positive aspect, even a source of strength, as one participant noted. A 40‐year‐old woman caring for her mother‐in‐law described their close relationship:

I love her like my own mother. She said she would like to be reborn as my biological mother in the next life. I joked that one biological mother was enough. She laughed at this. When she sees that I am going out on an errand, she will pretend to be upset. Then I have to kiss her and console her and tell her I will be right back. She always wants to me to hug and kiss her before she goes to sleep at night. (ID: 020416)

A recurring theme in the transcripts, however, is the impact of the nature of the relationship prior to the need for care. One wife from a devoted, loving marriage could not imagine abandoning her husband. Conversely, another carer reported that she did not have a good relationship with her husband in the past, which discouraged her from providing personal care now. She saw it as too much of a burden. Essentially, the care relationship would be as good (or bad) as the relationship was before it started.

Interactions with the community can also greatly impact caregivers positively. One participant recalled receiving affirmation from outsiders:

Sometimes, the neighbors visit and when they see what I am doing for my father‐in‐law, they provide encouragement and moral support. This makes me feel warm inside, as if we are in it together. (ID: 020416)

Connection with others brought a sense of community in what can be a solitary, sometimes isolating job.

Discussion

Caregiving can be a source of stress as well as a source of strength. In this study, we examined the experiences of family caregivers in Thailand to gain a more nuanced understanding of the positive and negative aspects of the role, and their psychological impacts on carers.

This study indicates that the experiences of Thai caregivers for older adults are shaped, in large part, by the unique cultural context of Thailand. Traditionally, the youngest daughter is the preferred caregiver. Nevertheless, Thais were noted for their adaptability [27]. In contemporary Thailand, due to demographic and socioeconomic factors (low fertility and migration of adult children), the preferred caregiver varies across tasks. Women (either daughter or wife) were preferred for meal preparation and personal care. On the other hand, there was no gender preference for transportation or financial assistance [20]. This cultural value likely informed caregiving expectation which may help lower burden among family caregivers. In addition, primary carers living in multigenerational households may share the responsibility with others, alleviating stress particularly for those who work full time in addition to their caregiving responsibilities.

Similar to a previous study [9], the amount of care in ADLs and IADLs may affect family caregivers' stress. This study, however, reveals that this stress was caused indirectly via the unpredictable mood changes of care receivers, possibly due to their illnesses and high levels of dependency.

This qualitative study particularly underscores the powerful impact of religious coping methods, which is similar to previous quantitative studies with other religions [28, 29]. This study also demonstrates primarily how Buddhism may influence the caregiving experience. Negotiating between the extremes of bliss and suffering and understanding suffering as a part of life, for example, may help carers mediate stress and find meaning in their day‐to‐day struggles [14]. Likewise, deeply embedded notions of katanyu and karmic destiny may help caregivers recognise positive aspects of caregiving. Thus, adult children in this study understood their roles as returning the gift of care and showing gratitude to their parents for raising them. It is an act based in reciprocity that is also, essentially, an investment in their futures.

Consistent with previous quantitative studies [30, 31, 32], this study demonstrates that affection from care recipients, encouragement from the community and good self‐perceived health all contribute to more positive experiences of caregiving. Also in line with the literature [22], the quality of relationships in the past, prior to the need for care, greatly influences the emotional rewards, or emotional tolls, of caregiving in the present.

Our findings, although limited in scope, suggest that the government should take into account both the positive and negative aspects of the caregiving role as they allocate budget and develop initiatives to support informal carers. Specifically, community leaders could engage with temples and centres for older people, which are available in most parts of Thailand, to develop programs that help caregivers cope with stress and celebrate the blessings of providing care for others. Communities should also consider implementing programs to educate and provide respite to primary caregivers, particularly those experiencing financial hardships. One concern should be about the cultural expectation of providing care that may cause those Thai family caregivers with traditional family values to perceive the use of services from others as losing face or an evasion of one's personal responsibility. This may lead to their not using formal services [33]. Future research in the area should come from the understanding of caregiving as a multidimensional experience. For example, scholars should not consider only a single construct of the care situation (e.g. the association between economic factors and caregiver's stress or satisfaction). They should also consider potential confounding or risk factors such as prior family relationship, cultural variation, caregiver role demands and caregiver health status.

Caring for an older relative is a complex endeavour and, therefore, requires careful assessment of its many impacts, both positive and negative. As Thailand ages rapidly, the need for caregivers will continue to grow. It is increasingly important that caregivers optimise their quality of life because it not only affects their health but also has a ripple effect on care recipients and others around them. From a wider perspective, family caregivers are increasingly important sources of support that allow older people to live longer in their own homes [34], which in turn reduces the need for financial support for institutionalisation or hospitalisation and, in turn, reduces the expenditure for long‐term care at the household and national levels.

Key Points

• Thai caregivers for older adults report negative impacts, including emotional stress, financial struggles and worry about lack of knowledge.

• Positive aspects of the caregiving experience include opportunities to show gratitude and accrue karma (from performing good deeds), notions primarily rooted in Buddhist teachings.

• Other positive impacts include affection from care recipients, often based on prior relationships, and encouragement from the wider community.

• Policies, research and support programs should not only address the negative impacts of caregiving, but they should underscore the positive aspects as well.