This integrative review was conducted to describe findings from Thai studies concerning family caregivers for cancer patients. Twenty-three studies that were published from 1994 to 2009 were considered. There were 15 quantitative studies and 8 qualitative studies. The stress and coping model developed by Lazarus and Folkman was the most popular theory that was used to guide the studies. The variables that were explored in the quantitative studies consisted of social support, stress, coping, caregiver burden, quality of life (QOL), and others. The qualitative findings revealed that there were several themes such as the following: the meaning of being family caregivers for cancer patients, the meaning of care, the experiences of caregivers, and the problems and needs of family caregivers in the Thai context. The evidence from the 23 studies reviewed showed that the state of knowledge of cancer caregivers in the Thai context is at an early stage compared with the state of knowledge in Western countries. More research needs to be done to explore the concepts related to negative and positive outcomes of caregiving.
- family caregivers
- cancer patient
- integrative review
In Thailand, cancer is still a critical health problem because it has been the leading cause of death for more than 10 years (Bureau of Policy and Strategy, Thailand, 2010). There are advances in medicine to treat cancer, but the numbers of cancer patients who die from this disease increase every year. Moreover, there are the ongoing changes in the health care system (American Cancer Society, 2010; Jemal, Siegel, Xu & Ward, 2010). This change has resulted in a shift of cancer care from hospital to home settings (Girgis & Lambert, 2009). The numbers of cancer patients seen in the outpatient department increased from 846,062 cases (14.78/1,000 persons) in the year 2007 to 1,138,585 cases (19.72/1,000 persons) in the year 2009 (Bureau of Policy and Strategy, Thailand, 2010). This shift indicates that the family’s involvement in caring for persons with cancer has increased and may reflect an increasing impact of cancer on family members (Given, Given & Kozachik, 2001).
The literature suggests that cancer patients have several kinds of problems and needs including symptom management, disease and treatment monitoring, medication administration, psycho-emotional support, assistance with activities of daily living, and assistance with instrument care (Esper, 2010; Marcusen, 2010). The patient’s problems and needs can cause burdens for family caregivers because they are often unprepared to provide care for the patients at home (Cameron, Shin, Diane Williams, & Stewart, 2004). They also receive only minimal attention from most health care providers, who tend to be focused primarily on the patients’ needs (Ferrell et al., 2011). They are a vulnerable and at-risk population that remains neglected by the health care system (Blum & Sherman, 2010). Hence, it is not surprising that research findings revealed that family caregivers’ various needs and health concerns pertaining to caring for a loved one with cancer at home are inadequately explored. Specifically, knowledge and information needs have been reported as the greatest needs among family caregivers (Blum & Sherman, 2010). In addition, the results of studies with cancer caregivers found that cancer affects all aspects of family caregivers including their physical, psychological, social, financial, and spiritual well-being (Girgis & Lambert, 2009; Klemm & Wheeler, 2005; Stenberg, Ruland, & Miaskowski, 2010; Wilkinson, 2010). Family caregivers need help from other people and health care providers to maintain their own well-being and to be able to maintain their role as family caregivers.
From the Western perspective, the studies that focused on caregivers of cancer patients have evolved from an embryonic stage to something resembling adolescence, this following four generations of studies (Lewis, 2006; Lewis, 2009). The literature comprises studies that identify the importance of cancer’s impact on the family, including descriptive and hypothesis-testing studies. Studies have moved from primarily stress-adaptation-coping models to family systems models. Furthermore, there are more studies focused on rigorous intervention criteria for caregivers or family members. Those studies are data-based, theory-informed intervention studies developed with the goal of improving family members’ adjustment to cancer (Lewis, 2006, 2009). However, there is little information about the state of knowledge of caregivers for cancer patients in Thailand. We will be less effective in planning care if we do not understand the needs of family caregivers for cancer patients in the Thai context. Hence the purpose of this integrative review was to describe findings from studies of Thai family caregivers for cancer patients as a basis for facilitating new directions in research and clinical practice. And so the research question that guided this review was, “What is the state of knowledge about family caregivers for patients with cancer in Thailand?”
The literature review for this study includes a search of the Thailand Library Integrated System (ThaiLIS), the Research Library of National Research Council of Thailand, E-Theses in the Library of Thai universities including Burapha University, Chiang Mai University, Chulalongkorn University, Kasetsart University, Khon Kaen University, Mahidol University, Naresuan, University, Prince of Songkla University, and Thammasat University, this with no date limitations. In addition, published articles in Thai journals, hard copy of theses, and reference lists of articles found by hand searching were included in this review. E-theses, research articles, and hard copy of theses that were included in this integrative review had to meet the following inclusion criteria: qualitative or quantitative research design, study participants were adult family caregivers providing care for adult patients with cancer in Thailand, published or unpublished, and in Thai or the English language. Key search terms that were used included caregiver, carer, spouse or partner, relatives, family member, caregiving, and cancer in Thai and the English language. An electronic form was developed by the researcher to record detailed information about research. The data were extracted from the primary study in the following areas: research title, author, year of publication, publication vehicle (e.g., thesis, journal article), research question/purpose, framework, method, variable, instrument, participant, characteristics of caregiver, and findings. Data were analyzed using descriptive statistics (e.g., frequency, percentages, mean, and range) to describe the information obtained from the research studies. Moreover, content analysis was used to categorize the research findings. Categories that were extracted and presented in this article included study characteristics, conceptual or theoretical frameworks, research variables, sampling techniques and caregivers’ characteristics, and research findings.
There were 23 studies that met the inclusion criteria. The studies were published from 1994 to 2009. The publications were from 5 journal articles, 17 theses, and 1 dissertation. Of the research designs used in the 23 studies in this review, 15 studies were quantitative design and 8 studies were qualitative design. The quantitative studies comprised 14 descriptive or correlational studies (Chansirimongkol, 2007; Cheewapoonphon, 1998; Issarapanit, 2006; Kasamkijwatana, Phuwarawuthipanich, Nampetch, & Khamwicha, 1996; Kasinpila, 2007; Kaweewiwitchai, 1993; Kunsabal, 2007; Maneewan, Panutat, Sudjinda, & Paisalsuthidaj, 1994; Navacheun, 2009; Oiemhno, 2003; Phligbua, 2005; Pitimana-aree, 2007; Tamtup, 2004; Ungwattansirikul, 2007; Wannasiri, 2005) and one quasi-experimental study (Sakunhongsophon, 1997). The qualitative studies comprised three phenomenological studies (Duandaw, 2004; Kitrungrote, Wonghongkul, Chanprasit, Sutharangsee, & Cohen, 2008; Prechavittayakul, 2006), one ethnography and phenomenological study (Klungkong, 2009), one ethnographic perspective study (Junda, 2004), and three qualitative studies in which the researchers did not provide details of the study design (Maneejumnong, 2008; Srikumnerd, 2008; Wiseso, 2002).
All quantitative studies (15 studies) described the conceptual or theoretical frameworks that were used to guide the research. They were the transactional model of stress and coping developed by Lazarus & Folkman in 1984 (seven studies, 46.67%), Roy’s adaptation model (two studies, 13.33%), Orem’s theory (one study, 6.67%), the concept of caregiver burden developed by Oberst in 1991 (one study, 6.67%), caregiver burden of Zarit, Reever, and Bach-Peterson in 1980 (one study, 6.67%), the Jalowiec concepts of stress coping (one study, 6.67%), and the model developed by the researchers (two studies, 13.33%).
The variables that were explored in the quantitative studies consisted of social support (six studies, 40%), caregiver’s stress (five studies, 33.33%), coping (five studies, 33.33%), caregiver burden (four studies, 26.67%), caregiver’s needs (three studies, 20.0%), quality of life (QOL; three studies, 20%), health status (two studies, 13.33%), sense of coherence (one study, 6.67%), adaptation (one study, 6.67%), hope (one study, 6.67%), preparedness (one study, 6.67%), caregiving behavior (one study, 6.67%), and family hardiness (one study, 6.67%).
Sampling Techniques and Caregiver’s Characteristics
Most sampling techniques were purposive sampling (22 studies, 95.7%), and one was simple random sampling (one studies, 4.3%). The data for the studies were gathered from several sources including tertiary/supertertiary hospitals (17 studies, 73.9%), cancer centers (two studies, 8.7%), home (three studies, 13.0%), and mixed-source (one study 4.3%). Most studies (14 studies, 60.9%) recruited the participants from the outpatient department. The number of study participants ranged from 30 to 270 caregivers in quantitative studies and 7 to 17 caregivers in qualitative studies.
The caregivers’ characteristics varied among the studies. The family caregivers ranged from 14 to 79 years of age, with a mean age of 42.91. Most of them were female (66.83%), and married (74.09%). In the 17 studies that reported the relationship between family caregiver and cancer patients, most of them (48.87%) were spouses, and 21.18% were adult children. The types of cancer patients who received care from family caregivers were breast cancer (two studies), head and neck cancer (two studies), mixed types (15 studies), or those that did not specify the type (4 studies). Moreover, most studies (13 studies, 56.52%) focused on several stages of cancer including advanced stage. There were 9 studies that focused on family caregivers for patients with advanced or terminal-stage cancer.
The quantitative studies reported various findings. For example, some studies reported that the family caregivers had moderate to high level of stress and had a fairly good level of QOL (Chansirimongkol, 2007; Pitimana-aree, 2007; Ungwattansirikul, 2007). Studies indicated that the level of caregiver burden, and caregiver needs perceived by family caregivers were at a moderate level (Kasinpila, 2007; Wannasiri, 2005). Family caregivers’ problems and needs comprised physical, psychological, financial, family, social, and knowledge (Maneewan, et al., 1994). Moreover, correlational studies indicated that there was the relationship between several factors and caregiving outcomes. For example, caregiver’s needs were positively related to caregiver burden (Tamtup, 2005; Wannasiri, 2005), family hardiness was negatively related to caregiver burden (Tamtup, 2005), caregiver burden was negatively associated with caregiver adaptation (Cheewapoonphon, 1998), and social support and coping were positively associated with caregiver’s QOL (Pitimana-aree, 2007; Ungwattansirikul, 2007). Details are provided in Table 1.
In the qualitative studies, the experiences of Thai family caregivers varied. The research findings also revealed several themes such as the following: the meaning of being family caregivers of cancer patients, the meaning of care, the experiences of caregivers, and problems and needs of family caregivers in the Thai context. The theme pertaining to the meaning of being family caregivers of patients with cancer comprised four categories: (a) It was time to return favors to the patients, (b) they could take better care of the patients than somebody else who was not a family member, (c) they displayed sympathy, understanding, and willingness to take care of the patients, and (d) it was their responsibility (Wiseso, 2002). The theme pertaining to meaning of care comprised two categories: (a) to help patients in every matter to make them comfortable physically and mentally and (b) to help patients do what they could not do for themselves (Prechavittayakul, 2006). The theme about the caregiver’s experiences comprised six categories: (a) “being committed for life to spouses,” (b) “enhancing the spouse’s comfort,” (c) “being a co-sufferer,” (d) “readjusting themselves,” (e) “appreciating people’s support,” (f) and “being gratified with self-development and marital life growth” (Kitrungrote, et al., 2008). Details are shown in Table 2.
This article is the first integrative review of family caregivers in Thailand. It is acknowledged that there may be several studies that might have been missed because the current database in Thailand falls short of inclusivity; most of the studies were not published in any journals. Even though this review included quantitative and qualitative studies, it is difficult to synthesize information and draw conclusions about the state of knowledge of family caregivers for patients with cancer in Thai culture. Hence, characteristics of family caregivers and related methodological issues will be discussed in this section.
Characteristics of Family Caregivers
In the Thai context, a family caregiver was defined as a family member who has blood relations with patients (i.e., father, mother, sister, bother, son, daughter, nephew, or niece) or a legal relationship (i.e., husband, wife, daughter in law, son in law, or mother in law), who lives in the same house with a loved one with cancer, and who provides unpaid care for a cancer patient (Chansirimongkol, 2007; Cheewapoonphon, 1998; Kasinpila, 2007; Kunsabal, 2007; Pitimana-aree, 2007; Sakunhongsophon, 1997; Tamtup, 2005; Ungwattansirikul, 2007; Wannasiri, 2005). This definition was consistent with the traditional definitions of family that includes a nuclear family comprising father, mother, and one or more children, or the extended family comprising grandparents, aunts, uncles, and cousins (Blum, 2010). Although the National Family Caregivers Association (2010) stated that defining the meaning of family caregivers was complicated and varied according to the people who defined it, the Thai definition of family caregiver seemed similar to its meaning in the Western perspective. However, according to the definition in the Thai context, a family caregiver usually referred to a person in an extended family, and the Western family caregiver was often referred to as a person in a nuclear family. The extended family scenario might have advantages for Thai patients with cancer because they will have several personal resources that can help them to deal with their cancer effectively. In both cultures, the family caregiver was usually a wife, mother, grandmother, or other female family member because caregiving was viewed as a feminine activity or quality (Blum, 2010). So, it is not surprising that this review found that most of family caregivers were female.
Methodological issues that were discussed in this section included the study’s theoretical framework, samples issues, and instrument issues.
All Thai studies in the review were developed by master’s or doctoral students and the nursing faculty from several universities. Moreover, the researchers used the conceptual or theoretical framework to guide their research. Therefore, it is believed that all studies that were included in this review were developed by using rigorous scientific methodology.
The stress and coping model developed by Lazarus & Folkman (1984) was the most popular theory that was used to guide the research. If we compare the studies in Thailand to studies in Western countries, it can be seen that Thai studies were consistent with the second generation of cancer caregiver studies in Western countries, studies that focused on the seriousness or magnitude of stress that cancer caused in their caregivers (Lewis, 2009). The studies in this generation used the stress-adaptation-coping model as a guide. Although the Thai studies used models that were developed in Western contexts, the research findings revealed that those models fit with the data in the Thai context. But increased model testing needs to be done in Thailand in any case.
There was limited access to the participants who were family caregivers for cancer patients in Thailand because there is no adequate database concerning said cancer caregivers. Most participants (97.1%) in the studies were recruited by purposive sampling from outpatient department in the tertiary hospitals. There were only 47 caregivers who were recruited from home-based settings. Most quantitative studies (60%) had small sample sizes (< 100 samples). As a result, the current research findings cannot be generalized to the cancer caregiver population as a whole. If researchers want to increase their understanding about caregiver’s experiences and outcomes, they need to increase recruitment of more participants in community or home-based settings. This should help refine the database for future studies.
Evidence suggests that most instruments for data collection in the Thai studies were borrowed from Western cultures. Examples of the instruments that were translated into Thai language were the Zarit Burden Interview (ZBI) developed by Zarit, Reever, and Bach-Peterson (1980); the family hardiness index (FHI) developed by McCubbin Thompson, and McCubbin (1996); the Jalowiec Coping Scale (JCS) developed by Jalowiec (1988); and the social support questionnaire (SSQ) developed by Schaefer et al. (1981). Although these instruments were developed in Western contexts, they continued to have high reliability when used in Thai culture. However, researchers still need to assess these carefully when they use the translated questionnaires because the characteristics of Thai caregivers may be different from Western caregivers. In the Thai context, religion, belief, culture, and traditional ways of life played major roles in the caring for family members. The caregiving for patients who were their spouses or parents was a way to show appreciation. Taking care of a family member is an affective reward and a strong norm of familial obligation in the Thai culture (Caffrey, 1992; Thongprateep, 2005). Buddhist caregivers especially believed that caring was a way to reimburse for past good deeds, to gain merit, and to return gratitude to their relatives. The caregiving role was perceived as an integral part of a Thai’s life, an unavoidable task that was provided with love, sympathy, and attachment (Subgranon & Lund, 2000). Conversely, Western people are normally more independent from family ties than people in Asian countries. When Westerners assume roles as primary caregivers, they may experience more suffering because they are less likely to be familiar with such new roles. Therefore, impacts of cancer caregiving may differ widely between Thais and those adhering to Western caregivers’ perceptions.
Conclusion and Recommendations
The number of cancer caregivers should increase continuously in the near future. Evidence from the 23 studies reviewed showed that the state of knowledge concerning cancer caregivers in the Thai context is in an embryonic state compared with the state of knowledge in Western countries. The research findings revealed that providing care for cancer patients has various impacts on caregivers. Several concepts related to caregiver outcomes (i.e., caregiver burden, caregiver’s QOL, coping, and social support) need to be examined more closely. There are some possible limitations of the present review. First, there may be a number of studies that might have been missed because of the inadequacy of the database in Thailand; most of the studies cited were not published in any journals. Second, all of the studies were developed by nursing scientists. So the state of knowledge may be not broad in scope. Third, all studies in this review were developed by nursing educators rather than by nurses in a clinical setting. The present study may not fully reflect the phenomena of caregiving from the clinical perspective. Future research needs to further explore the concepts related to negative and positive outcomes of caregiving. More studies are needed with focus on sample sizes, and which include sensitivity to measurements specific to Thai culture. Expanding the understanding of caregiving’s impact and related factors in cancer caregiver populations would enable nurses to develop innovative interventions to decrease negative outcomes and improve positive outcomes of caregiving for cancer patients.
Declaration of Conflicting Interests The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding The author(s) received no financial support for the research and/or authorship of this article.
- © The Author(s) 2013
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Warunee Meecharoen is a nursing instructor at Boromarajonani College of Nursing, Saraburi and a Ph.D. Candidate at Mahidol University, Thailand.
Laurel L. Northouse is a professor at School of Nursing, University of Michgan, Ann Arbor. She is a nurse scientist in the field of cancer research.
Yupapin Sirapo-ngam is a associate professor Ramathibodi School of Nursing, Mahidol University, Thailand. Her career focus on the field of caregivers and patients with chronic illness such as cancer, stroke.
Supreeda Monkong is a assistant professor at Ramathibodi School of Nursing, Mahidol University, Thailand. Her career focus on the field of caregivers and patients with chronic illness such as cancer, stroke.