Clinical Gerontologist
ISSN: 0731-7115 (Print) 1545-2301 (Online) Journal homepage: http://www.tandfonline.com/loi/wcli20
Cultural Adaptation of a Dyadic Intervention for Korean Couples Coping with Alzheimer’s Disease Minyoung Kwak PhD, Jung-Hwa Ha PhD, So-Yeon Hwang MA, Berit IngersollDayton PhD & Beth Spencer MSW To cite this article: Minyoung Kwak PhD, Jung-Hwa Ha PhD, So-Yeon Hwang MA, Berit Ingersoll-Dayton PhD & Beth Spencer MSW (2017): Cultural Adaptation of a Dyadic Intervention for Korean Couples Coping with Alzheimer’s Disease, Clinical Gerontologist, DOI: 10.1080/07317115.2017.1366385 To link to this article: http://dx.doi.org/10.1080/07317115.2017.1366385
Accepted author version posted online: 16 Aug 2017. Published online: 16 Aug 2017. Submit your article to this journal
Article views: 14
View related articles
View Crossmark data
Full Terms & Conditions of access and use can be found at http://www.tandfonline.com/action/journalInformation?journalCode=wcli20 Download by: [University of Florida]
Date: 18 October 2017, At: 20:52
CLINICAL GERONTOLOGIST https://doi.org/10.1080/07317115.2017.1366385
Cultural Adaptation of a Dyadic Intervention for Korean Couples Coping with Alzheimer’s Disease Minyoung Kwak, PhDa, Jung-Hwa Ha, PhDb, So-Yeon Hwang, MAb, Berit Ingersoll-Dayton, PhDc, and Beth Spencer, MSWc Department of Social Work, The Chinese University of Hong Kong, New Territories, Hong Kong; bDepartment of Social Welfare, Seoul National University, Seoul, Republic of Korea; cSchool of Social Work, University of Michigan, Ann Arbor, Michigan, USA
Downloaded by [University of Florida] at 20:52 18 October 2017
a
ABSTRACT
KEYWORDS
Objectives: The Couples Life Story Approach (CLSA) was recently reveloped in the U.S. for older couples dealing with dementia to improve their quality of life. The purpose of this article is to describe how the CLSA was adapted to be culturally appropriate for older Korean couples and to discuss cultural htemes that emerged during the implementation process. Methods: The intervention was adapted using the Cultural Adaptation Process Model. The revised materials were implemented on 56 Korean couples. A multiple case study method was used to analyze the clinical data. Results: Four cultural themes were identified: (1) dealing with negative memories in early years of marriage; (2) communication styles and patterns; (3) ways to incorporate difficult life events into the Life Story Book; and (4) complex dynamics of heirarchy in the relationship between older couples and the interventionist. With each theme, case examples are described that illustrate relevant issues. Conclusions: Cultural adaptation can be conducted systematically to improve the delivery of the CLSA for different populations. Clinical Implications: Cliniocians working with older Korean couples affected by dementia should consider cultural uniqueness in a life-story approach.
Cultural adaptation; dementia; life story; older Korean couples
Introduction South Korea is one of the most rapidly aging societies worldwide. The percentage of people over age 65 in Korea is projected to increase from 12.7% in 2014 to 37.4% in 2050 (Ministry of Health and Welfare, 2014). Along with the rapidly aging population, the number of people with dementia is growing. An estimated 610,000 people lived with dementia in 2014, and by 2050 this number is expected to quadruple and reach about 2,710,000 people (Cho et al., 2008). As the number of people who suffer from dementia increases sharply, the development of services and interventions for people with dementia and their families has become an increasingly important public health concern in Korea. This article describes an intervention that has been adapted for Korean couples who are dealing with dementia.
Although public programs and services have increased recently to address the need for care among people with dementia, there are few social services and programs for early stage dementia in Korea. Most services focus on moderate or severe dementia, whereas services for people experiencing early stages of dementia are limited to cognitive rehabilitation. In addition, despite the government’s efforts, family members still provide the majority of long-term care for older adults with dementia in Korea (Ministry of Health and Welfare, 2014). Along with longer life expectancy and weaker filial obligations, there are more households consisting of only older couples (Statistics Korea, 2012); thus, spouses have taken on an important role as caregivers for persons with dementia in Korea. Previous studies found that when one partner is diagnosed with dementia, the couple may experience
CONTACT Minyoung Kwak [email protected] Department of Social Work, The Chinese University of Hong Kong, Sha Tin, N. T. Hong Kong. Supplemental data for this article can be accessed on the publisher’s website. © 2017 Taylor & Francis Group, LLC
Downloaded by [University of Florida] at 20:52 18 October 2017
2
M. KWAK ET AL.
changes in roles and responsibilities within the marital relationship, which reduces reciprocity between the partners (Davies, 2011). Korean spousal caregivers have reported that they faced issues related to changes in the marital relationship (H.J. Lee, 2006). Prior interventions targeting family caregivers in Korea provided information about dementia and caregiving skills by lectures (S.Y. Kim, Kim, Sohn, & Min, 2007), while some interventions focused on teaching coping skills related to dementia-related symptoms and stress management in group settings (Lee & Kim, 2002). Although these interventions have been beneficial in reducing the burden of caregiver stress, little attention has been paid to improving the relationship quality of couples suffering from dementia in Korea. Thus, it is important to fill this gap in services for people in the early stages of dementia as well as to address the need for improving the relationship quality among couples in Korea where one partner suffers from memory loss. To address this need, we adapted the Couples Life Story Approach (CLSA), a dyadic intervention developed by a clinical researcher and a dementia expert in the United States (Ingersoll-Dayton et al., 2013). The CLSA is a strengths-based approach that works with both members of the dyad where one person has memory loss and helps the couple review their life together. In doing so, the intervention focuses on meaningful engagement, communication, and relationship satisfaction. The CLSA appears to have cross-cultural applicability because it was easily translated and adapted to Japanese couples who were dealing with mild to severe dementia (Ingersoll-Dayton, Spencer, Campbell, Kurokowa, & Ito, 2014). In this article, we first introduce the CLSA as it was developed in the United States and then describe the cultural adaptation process of the CLSA in Korea. Next, we discuss clinical themes related to cultural considerations that are found in the process of implementing the adapted intervention. Last, lessons learned from the cross-cultural adaptation of the intervention are discussed. The Couples Life Story Approach
The CLSA is a dyadic intervention consisting of five 1-hour sessions designed to enhance the relationship quality of couples dealing with dementia. The
CLSA aims to provide pleasurable activities shared by both members of the couple as they reminisce about their life together using pictures and mementoes as triggers for stories. In weekly sessions, a practitioner meets the couple in their home or a care facility. The practitioner documents the couple’s stories and compiles their mementoes to create a “Life Story Book.” Each session is designed for the couple to reminisce about different life chapters, such as the early, middle, and recent years of their marriage. In addition, the practitioner discusses different communication tips with the couple during the sessions and asks the couple to practice those tips between the sessions. In the last session, the couple reads the Life Story Book together with the practitioner while practicing communication skills and discusses ways in which they can utilize the book in the future. These skills are related to understanding memory loss, active listening and focusing on partners’ positive qualities and strengths, as well as providing cues for the person with memory loss and providing additional time for him or her to participate in the conversation. The original CLSA in the United States was conducted for couples dealing with mild to moderate dementia, and a previous study demonstrated high feasibility and acceptability of the CLSA (IngersollDayton et al., 2013). Cultural adaptation of the Couples Life Story Approach
Cultural adaptation is defined as “the systematic modification of an evidence-based treatment (EBT) or intervention protocol to consider language, culture, and context in such a way that it is compatible with the client’s cultural patterns, meanings, and values” (Bernal, Jiménez-Chafey, & Domenech Rodríguez, 2009, p. 362). To modify the original model of the CLSA to be culturally appropriate for older Korean couples, we utilized the Cultural Adaptation Process model suggested by Domenech-Rodriguez and Wieling (2004). This theoretical framework helped guide the procedures for cultural adaptation. The Cultural Adaptation Process model consists of three phases. The first phase includes activities related to preparations before implementing an intervention. In the second phase, initial
CLINICAL GERONTOLOGIST
adaptations are made to the intervention, tailoring the intervention content and measures before implementation. In the final phase, adaptations to the intervention continue, and changes to the intervention are integrated into a new intervention protocol. Based on the Cultural Adaptation Process model, we adapted the CLSA to a Korean context. This section describes the adjustments made in each phase.
Downloaded by [University of Florida] at 20:52 18 October 2017
Phase 1
To prepare the cultural adaptation, the intervention developers (BID and BS) in the U.S. and one Korean researcher (MK) collaborated for several years during the CLSA in the U.S. The intervention developers provided training on the CLSA to the Korean researcher. Next, the Korean research team was formed in order to examine the cultural fit of the intervention. The Korean team included two researchers from social work, one from neuropsychiatry, and one from anthropology. The team conducted a literature review on couples dealing with dementia, life review therapy, and older Korean couples. The review concluded that a dyadic intervention that improves interactions between caregivers and persons with dementia would be useful for older Korean couples because they experience changes in relationship quality due to dementia (Lee, 2006). Further, the review concluded that a leisure activity that was shared by a couple could be an important program component for psychosocial interventions for older Korean couples to improve their relationship quality (Ko, 2011). Additional support for these conclusions was that a structured life review has been successfully implemented for older Koreans (Yoon, Lee, Cha, & Kwon, 2011) indicating the potential feasibility and acceptability of the CLSA for older Koreans. Next, the Korean team interviewed two community leaders (e.g., Korean scholars with expertise in dementia care) to assess interests in the intervention and the needs of potential participants. The community leaders suggested targeting couples where the dementia is mild in order to maximize the participation of persons with memory loss. In addition to the consultation, some of participants in U. S. reported that they wished they had taken the
3
intervention sooner (Ingersoll-Dayton et al., 2013). Based on this assessment, the team concluded that the CLSA could be applicable to older Korean couples dealing with mild dementia. Phase 2
The second phase focused on adapting the intervention using the information derived from the first phase of the cultural adaptation process. We translated the intervention materials and protocol into Korean and made adaptations to two parts of the protocol (i.e., reminiscence questions and communication tips) that reflected older Korean couples’ cultural uniqueness. Reminiscence questions Several of the questions developed in the United States to facilitate reminiscence between the partners were not relevant to Korean couples. For example, in the U.S.-based CLSA, the key reminiscence questions for early years are related to the onset of the couple’s romantic relationship. In contrast, arranged marriage was common in the older generation of Koreans. Thus, we changed the questions to be applicable to couples who may have had an arranged marriage to: “How was the decision for your marriage made?” Interventionists were advised to ask further detailed questions during the session, such as “What was your first impression of each other?” and “What did you hear about your spouse before the wedding?” In addition, several of the U.S.-based questions asked partners to highlight each others’ strengths. Among our older Korean couples, the spousal relationship focused on practical family tasks, such as child rearing. Thus older Korean couples tended not to be familiar with expressing affection and emotions verbally. Consistent with these cultural characteristics, we added new questions that could highlight the couples’ strengths, even when they were not comfortable expressing emotions to each other. Those questions were: “What was a goal that the two of you set and achieved together in the middle years of your marriage?” and “How did you and your partner work together to reach the goal?” As it was possible that participants would be reluctant to express their strengths as a couple because modesty is highly valued in Asian culture, we also added new questions to
4
M. KWAK ET AL.
Downloaded by [University of Florida] at 20:52 18 October 2017
facilitate discussions about the couples’ strengths by asking about others’ thoughts about the couple: “What do friends and relatives say about you as a couple?” Communication tips Some of the communication tips were revised in a concrete way to fit the Korean context. For instance, one of the important communication tips in the U.S. intervention was “focusing on positives.” If this tip was translated into Korean, it would have sounded too abstract to older Koreans. Therefore, we changed the tip to “Give compliments to your spouse.” In the U.S. intervention material, there were specific strategies that couples utilized to focus on positives in the reminiscing process, such as “remind each other of the reasons you got together in the first place,” “point out positive characteristics and strengths from the past,” and “remind each other of the strengths you each still have.” For many older Korean couples, marriage was not determined by their decision. Thus, we changed those strategies to “Talk about a moment when you felt grateful to your spouse or your spouse was especially important in your life,” “provide praise about past events,’” and “praise the strengths your spouse had in the past and still has in the present.” Further, illustrations of good communication were revised to fit the Korean context. In the United States, one example of using the above communication strategy was in relation to looking at pictures from their earlier years of marriage and saying: “In this picture, I think you were at work, weren’t you? You were always such a hard worker.” When we created communication examples for older Korean couples, we knew that older Koreans usually put an emphasis on their children’s education and therefore took pictures when their children graduated from school. Thus, when applying the communication strategy of praising for personal characteristics displayed in the past, we provided an example as follows: “This is the picture we’ve taken at the college graduation of our oldest son. You worked so hard to fund his education. Without you, our son could not have finished his degree.” Phase 3
The third phase focused on implementing the intervention while adaptations were iteratively made as needed. Revisions to the protocol were
made during the implementation in Phase 3 and incorporated into the manual. To ensure that interventionists had adequate proficiency to conduct the CLSA, we followed the training components developed in the U.S. intervention. Specifically, the student interventionists watched a documentary film about the firsthand experiences of Koreans with dementia. They also read and discussed articles related to dementia issues as well as the theoretical background of the intervention. They shadowed the primary researcher (MK) who had been trained in the U.S.-based intervention. They observed intervention sessions and participated as an interventionist while being observed by the primary researcher. Session notes taken by the student interventionists were reviewed by the primary researcher. Weekly team meetings were held to discuss the cases. Based on the session notes from these cases and the notes from the team meeting, we identified four cultural themes that emerged during this implementation phase. The cultural themes and adaptations are discussed in the findings section.
Method Participants
To implement the CLSA, the primary researcher (MK) and five MSW graduate students participated as interventionists. All interventionists were women between the ages of 24 and 33 years. Recruitment of participants occurred through two university hospitals in Korea between December, 2013 and October, 2015 with approval from the Institutional Review Board at Seoul National University Bundang Hospital. Eligibility for this study required that participants had been diagnosed with Alzheimer’s disease according to the criteria of the National Institute of Neurological and Communicative Disorders and Stroke and the Alzheimer’s Disease and Related Disorders Association (McKhann et al., 1984). Their Clinical Dementia Rating scale was .5 or 1, indicating very mild or mild dementia. Sixty-eight heterosexual couples where one partner suffered from mild Alzheimer’s disease enrolled in this study. Twelve couples dropped out, and 56 couples completed the intervention (n = 102; See Figure 1 for a flow diagram and reasons for dropout). Among the participants
CLINICAL GERONTOLOGIST
5
Downloaded by [University of Florida] at 20:52 18 October 2017
Figure 1. Participant flow diagram.
who completed the intervention, the mean age for care recipients was 76.5 years (range, 61–88 years) and 75.1 years (range, 60–89 years) for caregivers. Among care recipients, 57% were men, and 43% were women. Data collection and analysis
A qualitative design using a multiple case study methodology (Stake, 2013) was applied to the data to analyze the cultural themes that emerged in the process of implementing the CLSA in Korea. This multiple case study method was chosen in order to further our understanding of how the intervention worked for older couples affected by dementia in different situations. To improve the rigor of this case study design, we utilized a triangulation of qualitative data sources: session notes written by interventionists, interviews with participants (e.g., how they experienced key components of the intervention), and weekly team meeting notes taken by the primary author over a 1-year period. The session notes recorded by interventionists were the primary source of data in developing codes and themes related to cultural adaptations in the CLSA. Interviews with participants and meeting notes were used as supplementary data. Data analysis was conducted following multiple case study method guidelines (Stake, 2013). Each case was examined for its uniqueness, and different themes were identified in each case. Constant comparison of themes across multiple cases was
made, and then themes were merged in order to create clusters related to the clinical issues that emerged from the intervention implementation, such as reminiscence, communication, and life story book. Clinical themes within the clusters were then evaluated by the team in terms of whether or not they reflected cultural uniqueness and characteristics of older Koreans. To increase the reliability of themes and clusters, two researchers first coded themes and clusters independently. After identifying initial themes and clusters, the research team held discussions to resolve disagreements on themes and clusters and reached a consensus. Several of the resulting themes were similar to those that emerged during the U.S. intervention: helping couples enjoy reminiscence, facilitating positive communication, engaging couples to create a meaningful life story book, and dealing with concerns about dementia care (Ingersoll-Dayton et al., 2013). However, some of the themes were distinctively different from the United States. In the findings section, we discuss the themes that reflect cultural uniqueness in implementing the CLSA for older Korean couples.
Results Four themes related to cultural issues and adaptations of the CLSA were identified. For each theme, we describe the issue and then provide a case example that illustrates the kinds of adaptations we made.
6
M. KWAK ET AL.
Downloaded by [University of Florida] at 20:52 18 October 2017
Dealing with negative memories in early years of marriage
Although each couple had unique life stories, they shared experiences of certain social and historical events that influenced their early lives. Participants in this intervention were usually individuals in their 70s and 80s who had experienced dramatic changes in economic and social systems. Many participants lived in absolute poverty when they were married, so the early years of marriage were full of memories related to poverty and work. In addition, when the participants were young, the traditional family structure was pervasive in Korean society. This traditional family structure was based on Confucian values emphasizing the hierarchy of gender and age (Sung, 2005). Within this family structure, adult sons had the primary responsibility to provide financial support for all family members. Daughters-in-law were expected to contribute their labor to the family by taking care of their parents-in-law and their siblings-inlaw. Many wives in the intervention took care of their husband’s family until their parents-in-law died or until siblings-in-law graduated from school and got married, and did not have any time to enjoy a honeymoon “like young people nowadays.” Some wives repeatedly criticized their husband for not fulfilling duties as a good husband and father, including an inability to make money for living expenses and not providing help caring for their children. Reminiscing about the early years of marriage often triggered participants’ negative memories and emotions related to economic hardship and family obligations. To help couples find meaning in difficult times, interventionists affirmed their efforts and often used reframing skills. Interventionists asked couples how they worked together to overcome financial difficulties and meet family needs and acknowledged their efforts in order to facilitate a different and less negative evaluation of these events. Case example: In the first session, Mr. and Mrs. Kim recalled that they suffered from financial hardship in their early years of marriage because Mr. Kim’s parents were swindled and lost their fortune. They also said that they had to work very hard at that time and did not have good memories about raising children.
In the second session, Mr. and Mrs. Kim did not choose to review their early years of marriage or find pictures for this phase in their life. Mr. Kim, who had Alzheimer’s disease, thought that talking about the early years of their marriage could be insulting to his parents, and Mrs. Kim felt very ashamed about sharing their stories about economic hardship. The interventionist changed the focus of conversation to how these difficulties were overcome. The couple then began talking about valuing their ability to handle difficulties in life. That is, Mr. and Mrs. Kim thought that because of their earlier ability to endure suffering, they were able to enjoy their current life and that their children and grandchildren lived well in the present. In the fifth session, Mrs. Kim commented that through this intervention she realized there were good memories in her life. She said, “Although I crossed high and steep mountains, I am a successful person.”
Communication styles and patterns among older Korean couples
The couples tended to be inhibited about expressing their emotions and had difficulty answering questions about their feelings. For the most part, they had not expressed feelings such as love and gratitude toward their spouses. More so than the interventionists in the United States, the interventionists in Korea took an active role to facilitate discussion of spouses’ strengths. They needed to be more directive to elicit participants’ thoughts and emotions about each other which interventionists did by asking participants to praise their spouses. Participants responded by making statements such as: “He is a good and kind person” and “Thank you for cooking for me every day.” Through the efforts of the interventionists, the couples were able to express their thoughts and emotions; however, some husbands were still reticent in expressing praise. Case example: In the first session, Mr. and Mrs. Yoo said that they usually talked to each other only about daily life, such as ‘let’s have a meal’ and did not have much conversation together. Mrs. Yoo said that she wanted to rely on her husband and hoped her husband could show his affection as she got older. She felt disappointed that he had never said “thank you,” “I love you,” or “sorry.” However, Mr. Yoo said, “I haven’t done such things [expressing affection] in my life and don’t want to do it. At those times, our generation lived in that way.” In the second session,
CLINICAL GERONTOLOGIST
Downloaded by [University of Florida] at 20:52 18 October 2017
Mrs. Yoo told stories about caring for her parents-inlaw when they were sick. Mrs. Yoo made her best effort to provide care to them until they died. The interventionist asked Mr. Yoo his thoughts about her story. He acknowledged his wife’s efforts by saying, “I knew that she went through a lot of difficulties at that time although I did not tell her my thoughts.” Mrs. Yoo responded, “I am really happy to hear that. I have never heard this.” In the last session, Mr. Yoo evaluated the intervention as helpful because he had a chance to think about communication with his wife although he had thought that old people, like him, could not learn the communication tips easily. Mrs. Yoo also thought the intervention helped them communicate with each other better than before.
Ways to incorporate difficult life events into the life story book
When they reminisced, some participants described difficult life events, such as the loss of a close family member or friend. In most cases, these difficult life events were not discussed openly because participants did not like to talk about the death of a loved one. Interventionists often learned of such a loss when couples selected pictures for the Life Story Book because couples said that they did not want to include the pictures of people who had passed away. Participants perceived the topic of death as taboo because it is regarded as a subject too sensitive to be discussed openly in Korean society (Martinson, Lee, & Kim, 2000). Considering that expressing grief is uncommon in Korean culture and that the grief process is not the focus of the intervention, interventionists decided to respect the participants’ choices not to include in their book stories related to death. Case example: Mr. and Mrs. Song discussed their memories about children. They expressed feelings of regret because they had not been able to provide good clothes and food to their children due to financial difficulties. In addition, the oldest daughter had recently died of cancer. The couple felt guilty and the spouses were pained by her death. The interventionist showed empathy for their sadness. At the end of the session, the interventionist asked the couple how they would like to include the story and picture about their daughter in their book. They decided to include their daughter’s picture taken when she was healthy, but did not want to write a story about her. They generally described their experiences of raising children without focusing on the daughter who died.
7
Complex dynamics of hierarchy in the relationship between older couples and interventionists
Korean culture emphasizes the importance of hierarchical relationships and respect for older adults. At the same time, in many Asian cultures, clients may perceive a practitioner, even one who is younger than they are, as an expert authority figure who can help them solve their problems; thus, the interventionist may need to be more proactive in providing direction, giving advice, and teaching skills (Hwang, 2006; Kim, Atkinson, & Umemoto, 2001). During the sessions, complex dynamics arose related to status and age differences. Some participants gave authority to the interventionists by calling them “teacher.” Rather than talking to each other while discussing their life stories, partners generally talked directly to the interventionist. They perceived the session as a “class” or “lesson” to become a better couple and relied on the interventionist’s opinions in selecting pictures and choosing stories for the Life Story Book. For these cases, interventionists helped couples increase their own involvement by providing concrete examples, suggesting a limited number of options for pictures and stories, and facilitating discussions between spouses. For many couples, age differences and marital status differences played a salient role in the relationship between couples and interventionists. The age differences played both positive and negative roles in this intervention. Participants often reported that the interventionists (unmarried female MSW students) were like a daughter or granddaughter, so they enjoyed reminiscing with a courteous young person. However, some participants said that these young people could not understand a long-term marital relationship. This was particularly applicable to participants with low levels of marital satisfaction who had maintained their marriage for the children or to uphold cultural norms. They sometimes expressed boredom or a state of ennui with their marriage and felt that young, unmarried interventionists could not understand their situation. These participants tended to be skeptical about the effectiveness of the intervention because they doubted the expertise of young interventionists due to their age and
8
M. KWAK ET AL.
Downloaded by [University of Florida] at 20:52 18 October 2017
marital status. To reduce participants’ skepticism about their youth, interventionists listened with an open and accepting attitude toward the couples and wore formal suits when they visited couples. Case example: Mr. Park had both Alzheimer’s disease and Parkinson’s disease and had difficulties in moving. In the first session, Mrs. Park was skeptical about the intervention because she thought the young female interventionist could not understand older people’s lives and marriages. The couple did not wish to participate in the home practice tasks, such as discussing their life or practicing communication skills by themselves between sessions. The interventionist tried to help the couple review their life together and practice communication tips during the session since they were reluctant to participate in these activities between sessions. Mrs. Park’s attitude toward the interventionist and the intervention did not change until the last session. During the evaluation, both Mr. and Mrs. Park reported that they enjoyed the life review and loved their Couples Life Story Book. Although Mrs. Park still thought that the intervention did not change their communication, Mr. Park said that he understood his wife better through the intervention.
Discussion The purpose of this article was to describe the cultural adaptation process of the CLSA and discuss cultural themes that emerged during the implementation phase. The process of cultural adaptation adhered to the core components in the original intervention, including the communication tips and Life Story Book. Although we followed the structure of the original CLSA and these core components were accepted well by participants (Kwak, Han, & Ha, 2017), additional modifications were made in terms of ways of delivering the content and responding to the couples. Findings from this study may be of use to social workers, psychologists, and other practitioners working with Korean couples affected by dementia. They may also offer insights on how an intervention can be adapted to make it more culturally relevant. The findings from the implementation stage of the adapted CLSA point to the importance of flexibility. Although we developed the intervention materials to be appropriate for older Korea couples, the cultural themes that emerged showed that further adaptations were necessary. One lesson we
learned was the importance of understanding social, historical, and cultural influences on older Korean couples’ experiences as well as utilizing appropriate skills in responding to their narratives. For American couples, remembering the early years of marriage usually facilitated positive memories about partners because the stories were related to how they fell in love with each other and what strengths they found at that time (IngersollDayton et al., 2013). However, many older Korean couples’ narratives of the early years of marriage focused on difficulties in meeting financial needs and familial obligations. The interventionists working with older Korean couples often needed to utilize reframing skills to help couples re-evaluate their life together when discussing the early years. The interventionists explored positive sides in their stories and highlighted the couples’ efforts to overcome financial difficulties, meet familial duties, and endure hardship for the sake of family harmony or children. In addition, telling the story of their life together in a chronological way helped couples realize how much they achieved over their life together and develop a different perspective on their earlier difficulties. Another lesson we learned was that interventionists needed to actively encourage older Korean couples to express their opinions about and emotions toward each other. Older American couples in the CLSA tended to talk to each other more during their life review, and expressed their affection for each other without the interventionist’s direct questions or guidance. Older Koreans, however, especially the husbands, were not familiar with expressing emotions verbally (Kim & Kim, 2003). Moreover, praising a spouse in front of others was not an appropriate behavior in traditional Korean culture (S.-H. Kim, 2003; Min, 2002); thus, some older Korean couples were reluctant to express their thoughts about their spouses. In such cases, the interventionist directly asked the couples about their thoughts and emotions related to specific events or suggested examples of strengths based on their stories. This approach seemed to help Korean couples become less reticent because they needed to respond to the interventionist. We found a difference between American and Korean couples in how difficult life events were
Downloaded by [University of Florida] at 20:52 18 October 2017
CLINICAL GERONTOLOGIST
incorporated into the Life Story Book. Although both American and Korean couples expressed grief for loss of loved ones during their life review, they integrated the stories into the book in different ways. American couples attempted to find a way in the Life Story Book to honor the person who died, such as devoting a few pages in memory of the loved one (Scherrer, Ingersoll-Dayton, & Spencer, 2014). However, older Korean couples did not refer to the death of the loved one in the book, and were especially reluctant to discuss the death of a child or child-in-law whereas they felt comfortable discussing the death of their parents or parents-in-law. The interventionists needed to understand these cultural differences in expressing grief and find appropriate ways to incorporate difficult life events into the Life Story Book with the couple. Last, the relationship between the interventionists and the couples is an important consideration in cultural adaptation. In the CLSA in both countries, most interventionists were young MSW students, and the age differences between the couple and the interventionist played a positive role. The participants wanted to share lessons they learned from their lives with the young interventionists and enjoyed the interventionist’s visit. In Korea, the role of the interventionist needed to be adjusted depending on the couples’ expectations. On the one hand, some participants expected the interventionist to be an expert who could solve their problems, such as choosing pictures and stories for the Life Story Book or giving solutions related to dementia care. On the other hand, some participants were skeptical about the effect of the intervention because of the interventionist’s young age and marital status. In the former case, the interventionist needed to find ways to encourage the couples’ participation, such as providing couples with several options during the intervention so that they could make decisions more easily. In the latter case, the interventionist needed to explore the cause of their negative responses and implement the components of the intervention in a flexible way. There are several limitations in this study. First, our data rely mainly on the interventionists’ documentation of sessions. Future studies on the cultural adaptation process need to consider utilizing direct observations as well as process evaluation derived from participants.
9
Second, our study focused on cultural adaptations of the CLSA. Future research needs to be conducted to evaluate the effectiveness of the adapted CLSA and whether the approach is more effective for certain subgroups (e.g. those with mild dementia). Last, as mentioned above, some participants’ expectations to learn practical skills to deal with dementia were not met by our intervention. Moreover, interventionists’ relatively young age also played a negative role for some participants. These limitations underscore the importance of taking participant needs into consideration in designing interventions for older adults. The Cultural Adaptation Process Model provides a framework for practitioners who are attempting to tailor interventions to make them more culturally appropriate. Our study successfully used this process for adapting the CLSA to a Korean context and integrated cultural adaptations into a protocol for Korean version of CLSA. When such adaptations are tailored to older Korean couples, the CLSA appears to be a promising intervention for older Korean couples dealing with dementia. Practitioners should utilize the cultural adaptation process to refine, implement, and test evidence-based interventions for their own communities. We hope that the findings from this study will provide guidance for practitioners and researchers working with older couples affected by dementia.
Clinical Implications ● It is vital for practitioners to understand the cultural adaptation process when tailoring an intervention from one culture to another. ● Practitioners should be steeped in the historical context of their clients in order to provide culturally appropriate interventions. ● The CLSA, when adapted to be culturally appropriate, offers opportunities for older Korean couples affected by dementia to interact with each other in meaningful ways.
10
M. KWAK ET AL.
Acknowledgments The authors are grateful to Professor Ji Won Han for her support collecting the data, to Professor Ki Woong Kim and Professor Hyeon Jung Lee for their consultation on the adaptation of the CLSA in Korea, and to the graduate students who were involved as interventionists in the research project.
Funding This article was supported by a Research and Development Grant from the Korea Health Industry Development Institute (Grant no. HI13C1652; PI: Jung-Hwa Ha).
Downloaded by [University of Florida] at 20:52 18 October 2017
References Bernal, G., Jiménez-Chafey, M. I., & Domenech Rodríguez, M. M. (2009). Cultural adaptation of treatments: A resource for considering culture in evidence-based practice. Professional Psychology: Research and Practice, 40(4), 361. doi:10.1037/a0016401 Cho, M., Kim, K., Kim, M., Kim, M., Kim, S., & Kim, J. (2008). Nationwide study on the prevalence of dementia in Korean elders (pp. 227). Seoul, South Korea: Seoul National University Hospital. Ministry of Health, Welfare, and Family Affairs. Davies, J. C. (2011). Preserving the “us identity” through marriage commitment while living with early-stage dementia. Dementia, 10(2), 217–234. doi:10.1177/ 1471301211398991 Domenech-Rodriguez, M., & Wieling, E. (2004). Developing culturally appropriate, evidence-based treatments for interventions with ethnic minority populations. In M. Rastogi & E. Wieling (Eds.). Voices of color: First person accounts of ethnic minority therapists (pp. 313–333). Thousand Oaks, CA: Sage. Hwang, W.-C. (2006). The psychotherapy adaptation and modification framework: Application to Asian Americans. American Psychologist, 61(7), 702. doi:10.1037/0003-066X.61.7.702 Ingersoll-Dayton, B., Spencer, B., Campbell, R., Kurokowa, Y., & Ito, M. (2014). Creating a duet: The couples life story approach in the United States and Japan. Dementia, 15(4), 481–493. doi:10.1177/1471301214526726 Ingersoll-Dayton, B., Spencer, B., Kwak, M., Scherrer, K., Allen, R. S., & Campbell, R. (2013). The couples life story approach: A dyadic intervention for dementia. Journal of Gerontological Social Work, 56(3), 237–254. doi:10.1080/ 01634372.2012.758214 Kim, B. S., Atkinson, D. R., & Umemoto, D. (2001). Asian cultural values and the counseling process current knowledge and directions for future research. The Counseling Psychologist, 29(4), 570–603. doi:10.1177/0011000001294006
Kim, S.-H. (2003). Korean cultural codes and communication. International Area Studies Review, 6(1), 93–114. doi:10.1177/223386590300600107 Kim, S.-W., & Kim, T.-H. (2003). Communication patterns and marital satisfaction among elderly men and women. Journal of Korean Home Management Association, 21(6), 141–155. Kim, S. Y., Kim, J. W., Sohn, S. K., & Min, S. Y. (2007). The effectiveness of the group education program among the family caregivers of the demented elderly. Journal of Welfare for the Aged Instutute, 36, 7–34. Ko, J. W. (2011). The effect of a relationship enrichment program for the elderly married couples. Korean Journal of Family Welfare, 16(4), 119–143. Kwak, M., Han, J., & Ha, J. (2017). Telling life stories: Understanding the experiences of older Korean couples affected by dementia. Manuscript submitted for publication. Lee, H. J. (2006). Caregiving experience and adaptation process of the husbands who are caring for wives with Alzheimer: Focusing on elderly couple household. Journal of the Korean Gerontological Society, 26, 45–62. Lee, Y. R., & Kim, Y. E. (2002). The effects of stress management training on the primary caregivers of demented elderly persons. Journal of Welfare for the Aged Instutute, 15, 169–188. Martinson, I. M., Lee, H.-O., & Kim, S. (2000). Culturally based interventions for families whose child dies. Illness, Crisis & Loss, 8(1), 17–31. doi:10.1177/105413730000800102 McKhann, G., Drachman, D., Folstein, M., Katzman, R., Price, D., & Stadlan, E. M. (1984). Clinical diagnosis of Alzheimer’s disease report of the NINCDS-ADRDA work group* under the auspices of department of health and human services task force on Alzheimer’s disease. Neurology, 34(7), 939–939. doi:10.1212/WNL.34.7.939 Min, H. S. (2002). Traditional humanistic speculation appeared in the Korean proverbs. Korean Semantics, 11, 199–234. Ministry of Health and Welfare. (2014). Ministry of health and welfare statistical yearbook 2014. Cheongju, South Korea: Author. Scherrer, K. S., Ingersoll-Dayton, B., & Spencer, B. (2014). Constructing couples’ stories: Narrative practice insights from a dyadic dementia intervention. Clinical Social Work Journal, 42(1), 90–100. doi:10.1007/s10615-013-0440-7 Stake, R. E. (2013). Multiple case study analysis. New York, NY: Guilford Press. Statistics Korea. (2012). Household projections for Korea: 2010-2035. Retrieved from http://kostat.go.kr/portal/eng/ pressReleases/8/2/index.board?bmode=read&bSeq=&aSeq= 273113&pageNo=1&rowNum=10&navCount=10&currPg= &sTarget=title&sTxt= Sung, K.-T. (2005). Care and respect for the elderly in Korea. Seoul, South Korea: Jimoondang. Yoon, H. S., Lee, K., Cha, M. H., & Kwon, J. H. (2011). The effectiveness of structured life review on life-life depression. Journal of the Korean Gerontological Society, 53, 69–121.
ISSN: 0731-7115 (Print) 1545-2301 (Online) Journal homepage: http://www.tandfonline.com/loi/wcli20
Cultural Adaptation of a Dyadic Intervention for Korean Couples Coping with Alzheimer’s Disease Minyoung Kwak PhD, Jung-Hwa Ha PhD, So-Yeon Hwang MA, Berit IngersollDayton PhD & Beth Spencer MSW To cite this article: Minyoung Kwak PhD, Jung-Hwa Ha PhD, So-Yeon Hwang MA, Berit Ingersoll-Dayton PhD & Beth Spencer MSW (2017): Cultural Adaptation of a Dyadic Intervention for Korean Couples Coping with Alzheimer’s Disease, Clinical Gerontologist, DOI: 10.1080/07317115.2017.1366385 To link to this article: http://dx.doi.org/10.1080/07317115.2017.1366385
Accepted author version posted online: 16 Aug 2017. Published online: 16 Aug 2017. Submit your article to this journal
Article views: 14
View related articles
View Crossmark data
Full Terms & Conditions of access and use can be found at http://www.tandfonline.com/action/journalInformation?journalCode=wcli20 Download by: [University of Florida]
Date: 18 October 2017, At: 20:52
CLINICAL GERONTOLOGIST https://doi.org/10.1080/07317115.2017.1366385
Cultural Adaptation of a Dyadic Intervention for Korean Couples Coping with Alzheimer’s Disease Minyoung Kwak, PhDa, Jung-Hwa Ha, PhDb, So-Yeon Hwang, MAb, Berit Ingersoll-Dayton, PhDc, and Beth Spencer, MSWc Department of Social Work, The Chinese University of Hong Kong, New Territories, Hong Kong; bDepartment of Social Welfare, Seoul National University, Seoul, Republic of Korea; cSchool of Social Work, University of Michigan, Ann Arbor, Michigan, USA
Downloaded by [University of Florida] at 20:52 18 October 2017
a
ABSTRACT
KEYWORDS
Objectives: The Couples Life Story Approach (CLSA) was recently reveloped in the U.S. for older couples dealing with dementia to improve their quality of life. The purpose of this article is to describe how the CLSA was adapted to be culturally appropriate for older Korean couples and to discuss cultural htemes that emerged during the implementation process. Methods: The intervention was adapted using the Cultural Adaptation Process Model. The revised materials were implemented on 56 Korean couples. A multiple case study method was used to analyze the clinical data. Results: Four cultural themes were identified: (1) dealing with negative memories in early years of marriage; (2) communication styles and patterns; (3) ways to incorporate difficult life events into the Life Story Book; and (4) complex dynamics of heirarchy in the relationship between older couples and the interventionist. With each theme, case examples are described that illustrate relevant issues. Conclusions: Cultural adaptation can be conducted systematically to improve the delivery of the CLSA for different populations. Clinical Implications: Cliniocians working with older Korean couples affected by dementia should consider cultural uniqueness in a life-story approach.
Cultural adaptation; dementia; life story; older Korean couples
Introduction South Korea is one of the most rapidly aging societies worldwide. The percentage of people over age 65 in Korea is projected to increase from 12.7% in 2014 to 37.4% in 2050 (Ministry of Health and Welfare, 2014). Along with the rapidly aging population, the number of people with dementia is growing. An estimated 610,000 people lived with dementia in 2014, and by 2050 this number is expected to quadruple and reach about 2,710,000 people (Cho et al., 2008). As the number of people who suffer from dementia increases sharply, the development of services and interventions for people with dementia and their families has become an increasingly important public health concern in Korea. This article describes an intervention that has been adapted for Korean couples who are dealing with dementia.
Although public programs and services have increased recently to address the need for care among people with dementia, there are few social services and programs for early stage dementia in Korea. Most services focus on moderate or severe dementia, whereas services for people experiencing early stages of dementia are limited to cognitive rehabilitation. In addition, despite the government’s efforts, family members still provide the majority of long-term care for older adults with dementia in Korea (Ministry of Health and Welfare, 2014). Along with longer life expectancy and weaker filial obligations, there are more households consisting of only older couples (Statistics Korea, 2012); thus, spouses have taken on an important role as caregivers for persons with dementia in Korea. Previous studies found that when one partner is diagnosed with dementia, the couple may experience
CONTACT Minyoung Kwak [email protected] Department of Social Work, The Chinese University of Hong Kong, Sha Tin, N. T. Hong Kong. Supplemental data for this article can be accessed on the publisher’s website. © 2017 Taylor & Francis Group, LLC
Downloaded by [University of Florida] at 20:52 18 October 2017
2
M. KWAK ET AL.
changes in roles and responsibilities within the marital relationship, which reduces reciprocity between the partners (Davies, 2011). Korean spousal caregivers have reported that they faced issues related to changes in the marital relationship (H.J. Lee, 2006). Prior interventions targeting family caregivers in Korea provided information about dementia and caregiving skills by lectures (S.Y. Kim, Kim, Sohn, & Min, 2007), while some interventions focused on teaching coping skills related to dementia-related symptoms and stress management in group settings (Lee & Kim, 2002). Although these interventions have been beneficial in reducing the burden of caregiver stress, little attention has been paid to improving the relationship quality of couples suffering from dementia in Korea. Thus, it is important to fill this gap in services for people in the early stages of dementia as well as to address the need for improving the relationship quality among couples in Korea where one partner suffers from memory loss. To address this need, we adapted the Couples Life Story Approach (CLSA), a dyadic intervention developed by a clinical researcher and a dementia expert in the United States (Ingersoll-Dayton et al., 2013). The CLSA is a strengths-based approach that works with both members of the dyad where one person has memory loss and helps the couple review their life together. In doing so, the intervention focuses on meaningful engagement, communication, and relationship satisfaction. The CLSA appears to have cross-cultural applicability because it was easily translated and adapted to Japanese couples who were dealing with mild to severe dementia (Ingersoll-Dayton, Spencer, Campbell, Kurokowa, & Ito, 2014). In this article, we first introduce the CLSA as it was developed in the United States and then describe the cultural adaptation process of the CLSA in Korea. Next, we discuss clinical themes related to cultural considerations that are found in the process of implementing the adapted intervention. Last, lessons learned from the cross-cultural adaptation of the intervention are discussed. The Couples Life Story Approach
The CLSA is a dyadic intervention consisting of five 1-hour sessions designed to enhance the relationship quality of couples dealing with dementia. The
CLSA aims to provide pleasurable activities shared by both members of the couple as they reminisce about their life together using pictures and mementoes as triggers for stories. In weekly sessions, a practitioner meets the couple in their home or a care facility. The practitioner documents the couple’s stories and compiles their mementoes to create a “Life Story Book.” Each session is designed for the couple to reminisce about different life chapters, such as the early, middle, and recent years of their marriage. In addition, the practitioner discusses different communication tips with the couple during the sessions and asks the couple to practice those tips between the sessions. In the last session, the couple reads the Life Story Book together with the practitioner while practicing communication skills and discusses ways in which they can utilize the book in the future. These skills are related to understanding memory loss, active listening and focusing on partners’ positive qualities and strengths, as well as providing cues for the person with memory loss and providing additional time for him or her to participate in the conversation. The original CLSA in the United States was conducted for couples dealing with mild to moderate dementia, and a previous study demonstrated high feasibility and acceptability of the CLSA (IngersollDayton et al., 2013). Cultural adaptation of the Couples Life Story Approach
Cultural adaptation is defined as “the systematic modification of an evidence-based treatment (EBT) or intervention protocol to consider language, culture, and context in such a way that it is compatible with the client’s cultural patterns, meanings, and values” (Bernal, Jiménez-Chafey, & Domenech Rodríguez, 2009, p. 362). To modify the original model of the CLSA to be culturally appropriate for older Korean couples, we utilized the Cultural Adaptation Process model suggested by Domenech-Rodriguez and Wieling (2004). This theoretical framework helped guide the procedures for cultural adaptation. The Cultural Adaptation Process model consists of three phases. The first phase includes activities related to preparations before implementing an intervention. In the second phase, initial
CLINICAL GERONTOLOGIST
adaptations are made to the intervention, tailoring the intervention content and measures before implementation. In the final phase, adaptations to the intervention continue, and changes to the intervention are integrated into a new intervention protocol. Based on the Cultural Adaptation Process model, we adapted the CLSA to a Korean context. This section describes the adjustments made in each phase.
Downloaded by [University of Florida] at 20:52 18 October 2017
Phase 1
To prepare the cultural adaptation, the intervention developers (BID and BS) in the U.S. and one Korean researcher (MK) collaborated for several years during the CLSA in the U.S. The intervention developers provided training on the CLSA to the Korean researcher. Next, the Korean research team was formed in order to examine the cultural fit of the intervention. The Korean team included two researchers from social work, one from neuropsychiatry, and one from anthropology. The team conducted a literature review on couples dealing with dementia, life review therapy, and older Korean couples. The review concluded that a dyadic intervention that improves interactions between caregivers and persons with dementia would be useful for older Korean couples because they experience changes in relationship quality due to dementia (Lee, 2006). Further, the review concluded that a leisure activity that was shared by a couple could be an important program component for psychosocial interventions for older Korean couples to improve their relationship quality (Ko, 2011). Additional support for these conclusions was that a structured life review has been successfully implemented for older Koreans (Yoon, Lee, Cha, & Kwon, 2011) indicating the potential feasibility and acceptability of the CLSA for older Koreans. Next, the Korean team interviewed two community leaders (e.g., Korean scholars with expertise in dementia care) to assess interests in the intervention and the needs of potential participants. The community leaders suggested targeting couples where the dementia is mild in order to maximize the participation of persons with memory loss. In addition to the consultation, some of participants in U. S. reported that they wished they had taken the
3
intervention sooner (Ingersoll-Dayton et al., 2013). Based on this assessment, the team concluded that the CLSA could be applicable to older Korean couples dealing with mild dementia. Phase 2
The second phase focused on adapting the intervention using the information derived from the first phase of the cultural adaptation process. We translated the intervention materials and protocol into Korean and made adaptations to two parts of the protocol (i.e., reminiscence questions and communication tips) that reflected older Korean couples’ cultural uniqueness. Reminiscence questions Several of the questions developed in the United States to facilitate reminiscence between the partners were not relevant to Korean couples. For example, in the U.S.-based CLSA, the key reminiscence questions for early years are related to the onset of the couple’s romantic relationship. In contrast, arranged marriage was common in the older generation of Koreans. Thus, we changed the questions to be applicable to couples who may have had an arranged marriage to: “How was the decision for your marriage made?” Interventionists were advised to ask further detailed questions during the session, such as “What was your first impression of each other?” and “What did you hear about your spouse before the wedding?” In addition, several of the U.S.-based questions asked partners to highlight each others’ strengths. Among our older Korean couples, the spousal relationship focused on practical family tasks, such as child rearing. Thus older Korean couples tended not to be familiar with expressing affection and emotions verbally. Consistent with these cultural characteristics, we added new questions that could highlight the couples’ strengths, even when they were not comfortable expressing emotions to each other. Those questions were: “What was a goal that the two of you set and achieved together in the middle years of your marriage?” and “How did you and your partner work together to reach the goal?” As it was possible that participants would be reluctant to express their strengths as a couple because modesty is highly valued in Asian culture, we also added new questions to
4
M. KWAK ET AL.
Downloaded by [University of Florida] at 20:52 18 October 2017
facilitate discussions about the couples’ strengths by asking about others’ thoughts about the couple: “What do friends and relatives say about you as a couple?” Communication tips Some of the communication tips were revised in a concrete way to fit the Korean context. For instance, one of the important communication tips in the U.S. intervention was “focusing on positives.” If this tip was translated into Korean, it would have sounded too abstract to older Koreans. Therefore, we changed the tip to “Give compliments to your spouse.” In the U.S. intervention material, there were specific strategies that couples utilized to focus on positives in the reminiscing process, such as “remind each other of the reasons you got together in the first place,” “point out positive characteristics and strengths from the past,” and “remind each other of the strengths you each still have.” For many older Korean couples, marriage was not determined by their decision. Thus, we changed those strategies to “Talk about a moment when you felt grateful to your spouse or your spouse was especially important in your life,” “provide praise about past events,’” and “praise the strengths your spouse had in the past and still has in the present.” Further, illustrations of good communication were revised to fit the Korean context. In the United States, one example of using the above communication strategy was in relation to looking at pictures from their earlier years of marriage and saying: “In this picture, I think you were at work, weren’t you? You were always such a hard worker.” When we created communication examples for older Korean couples, we knew that older Koreans usually put an emphasis on their children’s education and therefore took pictures when their children graduated from school. Thus, when applying the communication strategy of praising for personal characteristics displayed in the past, we provided an example as follows: “This is the picture we’ve taken at the college graduation of our oldest son. You worked so hard to fund his education. Without you, our son could not have finished his degree.” Phase 3
The third phase focused on implementing the intervention while adaptations were iteratively made as needed. Revisions to the protocol were
made during the implementation in Phase 3 and incorporated into the manual. To ensure that interventionists had adequate proficiency to conduct the CLSA, we followed the training components developed in the U.S. intervention. Specifically, the student interventionists watched a documentary film about the firsthand experiences of Koreans with dementia. They also read and discussed articles related to dementia issues as well as the theoretical background of the intervention. They shadowed the primary researcher (MK) who had been trained in the U.S.-based intervention. They observed intervention sessions and participated as an interventionist while being observed by the primary researcher. Session notes taken by the student interventionists were reviewed by the primary researcher. Weekly team meetings were held to discuss the cases. Based on the session notes from these cases and the notes from the team meeting, we identified four cultural themes that emerged during this implementation phase. The cultural themes and adaptations are discussed in the findings section.
Method Participants
To implement the CLSA, the primary researcher (MK) and five MSW graduate students participated as interventionists. All interventionists were women between the ages of 24 and 33 years. Recruitment of participants occurred through two university hospitals in Korea between December, 2013 and October, 2015 with approval from the Institutional Review Board at Seoul National University Bundang Hospital. Eligibility for this study required that participants had been diagnosed with Alzheimer’s disease according to the criteria of the National Institute of Neurological and Communicative Disorders and Stroke and the Alzheimer’s Disease and Related Disorders Association (McKhann et al., 1984). Their Clinical Dementia Rating scale was .5 or 1, indicating very mild or mild dementia. Sixty-eight heterosexual couples where one partner suffered from mild Alzheimer’s disease enrolled in this study. Twelve couples dropped out, and 56 couples completed the intervention (n = 102; See Figure 1 for a flow diagram and reasons for dropout). Among the participants
CLINICAL GERONTOLOGIST
5
Downloaded by [University of Florida] at 20:52 18 October 2017
Figure 1. Participant flow diagram.
who completed the intervention, the mean age for care recipients was 76.5 years (range, 61–88 years) and 75.1 years (range, 60–89 years) for caregivers. Among care recipients, 57% were men, and 43% were women. Data collection and analysis
A qualitative design using a multiple case study methodology (Stake, 2013) was applied to the data to analyze the cultural themes that emerged in the process of implementing the CLSA in Korea. This multiple case study method was chosen in order to further our understanding of how the intervention worked for older couples affected by dementia in different situations. To improve the rigor of this case study design, we utilized a triangulation of qualitative data sources: session notes written by interventionists, interviews with participants (e.g., how they experienced key components of the intervention), and weekly team meeting notes taken by the primary author over a 1-year period. The session notes recorded by interventionists were the primary source of data in developing codes and themes related to cultural adaptations in the CLSA. Interviews with participants and meeting notes were used as supplementary data. Data analysis was conducted following multiple case study method guidelines (Stake, 2013). Each case was examined for its uniqueness, and different themes were identified in each case. Constant comparison of themes across multiple cases was
made, and then themes were merged in order to create clusters related to the clinical issues that emerged from the intervention implementation, such as reminiscence, communication, and life story book. Clinical themes within the clusters were then evaluated by the team in terms of whether or not they reflected cultural uniqueness and characteristics of older Koreans. To increase the reliability of themes and clusters, two researchers first coded themes and clusters independently. After identifying initial themes and clusters, the research team held discussions to resolve disagreements on themes and clusters and reached a consensus. Several of the resulting themes were similar to those that emerged during the U.S. intervention: helping couples enjoy reminiscence, facilitating positive communication, engaging couples to create a meaningful life story book, and dealing with concerns about dementia care (Ingersoll-Dayton et al., 2013). However, some of the themes were distinctively different from the United States. In the findings section, we discuss the themes that reflect cultural uniqueness in implementing the CLSA for older Korean couples.
Results Four themes related to cultural issues and adaptations of the CLSA were identified. For each theme, we describe the issue and then provide a case example that illustrates the kinds of adaptations we made.
6
M. KWAK ET AL.
Downloaded by [University of Florida] at 20:52 18 October 2017
Dealing with negative memories in early years of marriage
Although each couple had unique life stories, they shared experiences of certain social and historical events that influenced their early lives. Participants in this intervention were usually individuals in their 70s and 80s who had experienced dramatic changes in economic and social systems. Many participants lived in absolute poverty when they were married, so the early years of marriage were full of memories related to poverty and work. In addition, when the participants were young, the traditional family structure was pervasive in Korean society. This traditional family structure was based on Confucian values emphasizing the hierarchy of gender and age (Sung, 2005). Within this family structure, adult sons had the primary responsibility to provide financial support for all family members. Daughters-in-law were expected to contribute their labor to the family by taking care of their parents-in-law and their siblings-inlaw. Many wives in the intervention took care of their husband’s family until their parents-in-law died or until siblings-in-law graduated from school and got married, and did not have any time to enjoy a honeymoon “like young people nowadays.” Some wives repeatedly criticized their husband for not fulfilling duties as a good husband and father, including an inability to make money for living expenses and not providing help caring for their children. Reminiscing about the early years of marriage often triggered participants’ negative memories and emotions related to economic hardship and family obligations. To help couples find meaning in difficult times, interventionists affirmed their efforts and often used reframing skills. Interventionists asked couples how they worked together to overcome financial difficulties and meet family needs and acknowledged their efforts in order to facilitate a different and less negative evaluation of these events. Case example: In the first session, Mr. and Mrs. Kim recalled that they suffered from financial hardship in their early years of marriage because Mr. Kim’s parents were swindled and lost their fortune. They also said that they had to work very hard at that time and did not have good memories about raising children.
In the second session, Mr. and Mrs. Kim did not choose to review their early years of marriage or find pictures for this phase in their life. Mr. Kim, who had Alzheimer’s disease, thought that talking about the early years of their marriage could be insulting to his parents, and Mrs. Kim felt very ashamed about sharing their stories about economic hardship. The interventionist changed the focus of conversation to how these difficulties were overcome. The couple then began talking about valuing their ability to handle difficulties in life. That is, Mr. and Mrs. Kim thought that because of their earlier ability to endure suffering, they were able to enjoy their current life and that their children and grandchildren lived well in the present. In the fifth session, Mrs. Kim commented that through this intervention she realized there were good memories in her life. She said, “Although I crossed high and steep mountains, I am a successful person.”
Communication styles and patterns among older Korean couples
The couples tended to be inhibited about expressing their emotions and had difficulty answering questions about their feelings. For the most part, they had not expressed feelings such as love and gratitude toward their spouses. More so than the interventionists in the United States, the interventionists in Korea took an active role to facilitate discussion of spouses’ strengths. They needed to be more directive to elicit participants’ thoughts and emotions about each other which interventionists did by asking participants to praise their spouses. Participants responded by making statements such as: “He is a good and kind person” and “Thank you for cooking for me every day.” Through the efforts of the interventionists, the couples were able to express their thoughts and emotions; however, some husbands were still reticent in expressing praise. Case example: In the first session, Mr. and Mrs. Yoo said that they usually talked to each other only about daily life, such as ‘let’s have a meal’ and did not have much conversation together. Mrs. Yoo said that she wanted to rely on her husband and hoped her husband could show his affection as she got older. She felt disappointed that he had never said “thank you,” “I love you,” or “sorry.” However, Mr. Yoo said, “I haven’t done such things [expressing affection] in my life and don’t want to do it. At those times, our generation lived in that way.” In the second session,
CLINICAL GERONTOLOGIST
Downloaded by [University of Florida] at 20:52 18 October 2017
Mrs. Yoo told stories about caring for her parents-inlaw when they were sick. Mrs. Yoo made her best effort to provide care to them until they died. The interventionist asked Mr. Yoo his thoughts about her story. He acknowledged his wife’s efforts by saying, “I knew that she went through a lot of difficulties at that time although I did not tell her my thoughts.” Mrs. Yoo responded, “I am really happy to hear that. I have never heard this.” In the last session, Mr. Yoo evaluated the intervention as helpful because he had a chance to think about communication with his wife although he had thought that old people, like him, could not learn the communication tips easily. Mrs. Yoo also thought the intervention helped them communicate with each other better than before.
Ways to incorporate difficult life events into the life story book
When they reminisced, some participants described difficult life events, such as the loss of a close family member or friend. In most cases, these difficult life events were not discussed openly because participants did not like to talk about the death of a loved one. Interventionists often learned of such a loss when couples selected pictures for the Life Story Book because couples said that they did not want to include the pictures of people who had passed away. Participants perceived the topic of death as taboo because it is regarded as a subject too sensitive to be discussed openly in Korean society (Martinson, Lee, & Kim, 2000). Considering that expressing grief is uncommon in Korean culture and that the grief process is not the focus of the intervention, interventionists decided to respect the participants’ choices not to include in their book stories related to death. Case example: Mr. and Mrs. Song discussed their memories about children. They expressed feelings of regret because they had not been able to provide good clothes and food to their children due to financial difficulties. In addition, the oldest daughter had recently died of cancer. The couple felt guilty and the spouses were pained by her death. The interventionist showed empathy for their sadness. At the end of the session, the interventionist asked the couple how they would like to include the story and picture about their daughter in their book. They decided to include their daughter’s picture taken when she was healthy, but did not want to write a story about her. They generally described their experiences of raising children without focusing on the daughter who died.
7
Complex dynamics of hierarchy in the relationship between older couples and interventionists
Korean culture emphasizes the importance of hierarchical relationships and respect for older adults. At the same time, in many Asian cultures, clients may perceive a practitioner, even one who is younger than they are, as an expert authority figure who can help them solve their problems; thus, the interventionist may need to be more proactive in providing direction, giving advice, and teaching skills (Hwang, 2006; Kim, Atkinson, & Umemoto, 2001). During the sessions, complex dynamics arose related to status and age differences. Some participants gave authority to the interventionists by calling them “teacher.” Rather than talking to each other while discussing their life stories, partners generally talked directly to the interventionist. They perceived the session as a “class” or “lesson” to become a better couple and relied on the interventionist’s opinions in selecting pictures and choosing stories for the Life Story Book. For these cases, interventionists helped couples increase their own involvement by providing concrete examples, suggesting a limited number of options for pictures and stories, and facilitating discussions between spouses. For many couples, age differences and marital status differences played a salient role in the relationship between couples and interventionists. The age differences played both positive and negative roles in this intervention. Participants often reported that the interventionists (unmarried female MSW students) were like a daughter or granddaughter, so they enjoyed reminiscing with a courteous young person. However, some participants said that these young people could not understand a long-term marital relationship. This was particularly applicable to participants with low levels of marital satisfaction who had maintained their marriage for the children or to uphold cultural norms. They sometimes expressed boredom or a state of ennui with their marriage and felt that young, unmarried interventionists could not understand their situation. These participants tended to be skeptical about the effectiveness of the intervention because they doubted the expertise of young interventionists due to their age and
8
M. KWAK ET AL.
Downloaded by [University of Florida] at 20:52 18 October 2017
marital status. To reduce participants’ skepticism about their youth, interventionists listened with an open and accepting attitude toward the couples and wore formal suits when they visited couples. Case example: Mr. Park had both Alzheimer’s disease and Parkinson’s disease and had difficulties in moving. In the first session, Mrs. Park was skeptical about the intervention because she thought the young female interventionist could not understand older people’s lives and marriages. The couple did not wish to participate in the home practice tasks, such as discussing their life or practicing communication skills by themselves between sessions. The interventionist tried to help the couple review their life together and practice communication tips during the session since they were reluctant to participate in these activities between sessions. Mrs. Park’s attitude toward the interventionist and the intervention did not change until the last session. During the evaluation, both Mr. and Mrs. Park reported that they enjoyed the life review and loved their Couples Life Story Book. Although Mrs. Park still thought that the intervention did not change their communication, Mr. Park said that he understood his wife better through the intervention.
Discussion The purpose of this article was to describe the cultural adaptation process of the CLSA and discuss cultural themes that emerged during the implementation phase. The process of cultural adaptation adhered to the core components in the original intervention, including the communication tips and Life Story Book. Although we followed the structure of the original CLSA and these core components were accepted well by participants (Kwak, Han, & Ha, 2017), additional modifications were made in terms of ways of delivering the content and responding to the couples. Findings from this study may be of use to social workers, psychologists, and other practitioners working with Korean couples affected by dementia. They may also offer insights on how an intervention can be adapted to make it more culturally relevant. The findings from the implementation stage of the adapted CLSA point to the importance of flexibility. Although we developed the intervention materials to be appropriate for older Korea couples, the cultural themes that emerged showed that further adaptations were necessary. One lesson we
learned was the importance of understanding social, historical, and cultural influences on older Korean couples’ experiences as well as utilizing appropriate skills in responding to their narratives. For American couples, remembering the early years of marriage usually facilitated positive memories about partners because the stories were related to how they fell in love with each other and what strengths they found at that time (IngersollDayton et al., 2013). However, many older Korean couples’ narratives of the early years of marriage focused on difficulties in meeting financial needs and familial obligations. The interventionists working with older Korean couples often needed to utilize reframing skills to help couples re-evaluate their life together when discussing the early years. The interventionists explored positive sides in their stories and highlighted the couples’ efforts to overcome financial difficulties, meet familial duties, and endure hardship for the sake of family harmony or children. In addition, telling the story of their life together in a chronological way helped couples realize how much they achieved over their life together and develop a different perspective on their earlier difficulties. Another lesson we learned was that interventionists needed to actively encourage older Korean couples to express their opinions about and emotions toward each other. Older American couples in the CLSA tended to talk to each other more during their life review, and expressed their affection for each other without the interventionist’s direct questions or guidance. Older Koreans, however, especially the husbands, were not familiar with expressing emotions verbally (Kim & Kim, 2003). Moreover, praising a spouse in front of others was not an appropriate behavior in traditional Korean culture (S.-H. Kim, 2003; Min, 2002); thus, some older Korean couples were reluctant to express their thoughts about their spouses. In such cases, the interventionist directly asked the couples about their thoughts and emotions related to specific events or suggested examples of strengths based on their stories. This approach seemed to help Korean couples become less reticent because they needed to respond to the interventionist. We found a difference between American and Korean couples in how difficult life events were
Downloaded by [University of Florida] at 20:52 18 October 2017
CLINICAL GERONTOLOGIST
incorporated into the Life Story Book. Although both American and Korean couples expressed grief for loss of loved ones during their life review, they integrated the stories into the book in different ways. American couples attempted to find a way in the Life Story Book to honor the person who died, such as devoting a few pages in memory of the loved one (Scherrer, Ingersoll-Dayton, & Spencer, 2014). However, older Korean couples did not refer to the death of the loved one in the book, and were especially reluctant to discuss the death of a child or child-in-law whereas they felt comfortable discussing the death of their parents or parents-in-law. The interventionists needed to understand these cultural differences in expressing grief and find appropriate ways to incorporate difficult life events into the Life Story Book with the couple. Last, the relationship between the interventionists and the couples is an important consideration in cultural adaptation. In the CLSA in both countries, most interventionists were young MSW students, and the age differences between the couple and the interventionist played a positive role. The participants wanted to share lessons they learned from their lives with the young interventionists and enjoyed the interventionist’s visit. In Korea, the role of the interventionist needed to be adjusted depending on the couples’ expectations. On the one hand, some participants expected the interventionist to be an expert who could solve their problems, such as choosing pictures and stories for the Life Story Book or giving solutions related to dementia care. On the other hand, some participants were skeptical about the effect of the intervention because of the interventionist’s young age and marital status. In the former case, the interventionist needed to find ways to encourage the couples’ participation, such as providing couples with several options during the intervention so that they could make decisions more easily. In the latter case, the interventionist needed to explore the cause of their negative responses and implement the components of the intervention in a flexible way. There are several limitations in this study. First, our data rely mainly on the interventionists’ documentation of sessions. Future studies on the cultural adaptation process need to consider utilizing direct observations as well as process evaluation derived from participants.
9
Second, our study focused on cultural adaptations of the CLSA. Future research needs to be conducted to evaluate the effectiveness of the adapted CLSA and whether the approach is more effective for certain subgroups (e.g. those with mild dementia). Last, as mentioned above, some participants’ expectations to learn practical skills to deal with dementia were not met by our intervention. Moreover, interventionists’ relatively young age also played a negative role for some participants. These limitations underscore the importance of taking participant needs into consideration in designing interventions for older adults. The Cultural Adaptation Process Model provides a framework for practitioners who are attempting to tailor interventions to make them more culturally appropriate. Our study successfully used this process for adapting the CLSA to a Korean context and integrated cultural adaptations into a protocol for Korean version of CLSA. When such adaptations are tailored to older Korean couples, the CLSA appears to be a promising intervention for older Korean couples dealing with dementia. Practitioners should utilize the cultural adaptation process to refine, implement, and test evidence-based interventions for their own communities. We hope that the findings from this study will provide guidance for practitioners and researchers working with older couples affected by dementia.
Clinical Implications ● It is vital for practitioners to understand the cultural adaptation process when tailoring an intervention from one culture to another. ● Practitioners should be steeped in the historical context of their clients in order to provide culturally appropriate interventions. ● The CLSA, when adapted to be culturally appropriate, offers opportunities for older Korean couples affected by dementia to interact with each other in meaningful ways.
10
M. KWAK ET AL.
Acknowledgments The authors are grateful to Professor Ji Won Han for her support collecting the data, to Professor Ki Woong Kim and Professor Hyeon Jung Lee for their consultation on the adaptation of the CLSA in Korea, and to the graduate students who were involved as interventionists in the research project.
Funding This article was supported by a Research and Development Grant from the Korea Health Industry Development Institute (Grant no. HI13C1652; PI: Jung-Hwa Ha).
Downloaded by [University of Florida] at 20:52 18 October 2017
References Bernal, G., Jiménez-Chafey, M. I., & Domenech Rodríguez, M. M. (2009). Cultural adaptation of treatments: A resource for considering culture in evidence-based practice. Professional Psychology: Research and Practice, 40(4), 361. doi:10.1037/a0016401 Cho, M., Kim, K., Kim, M., Kim, M., Kim, S., & Kim, J. (2008). Nationwide study on the prevalence of dementia in Korean elders (pp. 227). Seoul, South Korea: Seoul National University Hospital. Ministry of Health, Welfare, and Family Affairs. Davies, J. C. (2011). Preserving the “us identity” through marriage commitment while living with early-stage dementia. Dementia, 10(2), 217–234. doi:10.1177/ 1471301211398991 Domenech-Rodriguez, M., & Wieling, E. (2004). Developing culturally appropriate, evidence-based treatments for interventions with ethnic minority populations. In M. Rastogi & E. Wieling (Eds.). Voices of color: First person accounts of ethnic minority therapists (pp. 313–333). Thousand Oaks, CA: Sage. Hwang, W.-C. (2006). The psychotherapy adaptation and modification framework: Application to Asian Americans. American Psychologist, 61(7), 702. doi:10.1037/0003-066X.61.7.702 Ingersoll-Dayton, B., Spencer, B., Campbell, R., Kurokowa, Y., & Ito, M. (2014). Creating a duet: The couples life story approach in the United States and Japan. Dementia, 15(4), 481–493. doi:10.1177/1471301214526726 Ingersoll-Dayton, B., Spencer, B., Kwak, M., Scherrer, K., Allen, R. S., & Campbell, R. (2013). The couples life story approach: A dyadic intervention for dementia. Journal of Gerontological Social Work, 56(3), 237–254. doi:10.1080/ 01634372.2012.758214 Kim, B. S., Atkinson, D. R., & Umemoto, D. (2001). Asian cultural values and the counseling process current knowledge and directions for future research. The Counseling Psychologist, 29(4), 570–603. doi:10.1177/0011000001294006
Kim, S.-H. (2003). Korean cultural codes and communication. International Area Studies Review, 6(1), 93–114. doi:10.1177/223386590300600107 Kim, S.-W., & Kim, T.-H. (2003). Communication patterns and marital satisfaction among elderly men and women. Journal of Korean Home Management Association, 21(6), 141–155. Kim, S. Y., Kim, J. W., Sohn, S. K., & Min, S. Y. (2007). The effectiveness of the group education program among the family caregivers of the demented elderly. Journal of Welfare for the Aged Instutute, 36, 7–34. Ko, J. W. (2011). The effect of a relationship enrichment program for the elderly married couples. Korean Journal of Family Welfare, 16(4), 119–143. Kwak, M., Han, J., & Ha, J. (2017). Telling life stories: Understanding the experiences of older Korean couples affected by dementia. Manuscript submitted for publication. Lee, H. J. (2006). Caregiving experience and adaptation process of the husbands who are caring for wives with Alzheimer: Focusing on elderly couple household. Journal of the Korean Gerontological Society, 26, 45–62. Lee, Y. R., & Kim, Y. E. (2002). The effects of stress management training on the primary caregivers of demented elderly persons. Journal of Welfare for the Aged Instutute, 15, 169–188. Martinson, I. M., Lee, H.-O., & Kim, S. (2000). Culturally based interventions for families whose child dies. Illness, Crisis & Loss, 8(1), 17–31. doi:10.1177/105413730000800102 McKhann, G., Drachman, D., Folstein, M., Katzman, R., Price, D., & Stadlan, E. M. (1984). Clinical diagnosis of Alzheimer’s disease report of the NINCDS-ADRDA work group* under the auspices of department of health and human services task force on Alzheimer’s disease. Neurology, 34(7), 939–939. doi:10.1212/WNL.34.7.939 Min, H. S. (2002). Traditional humanistic speculation appeared in the Korean proverbs. Korean Semantics, 11, 199–234. Ministry of Health and Welfare. (2014). Ministry of health and welfare statistical yearbook 2014. Cheongju, South Korea: Author. Scherrer, K. S., Ingersoll-Dayton, B., & Spencer, B. (2014). Constructing couples’ stories: Narrative practice insights from a dyadic dementia intervention. Clinical Social Work Journal, 42(1), 90–100. doi:10.1007/s10615-013-0440-7 Stake, R. E. (2013). Multiple case study analysis. New York, NY: Guilford Press. Statistics Korea. (2012). Household projections for Korea: 2010-2035. Retrieved from http://kostat.go.kr/portal/eng/ pressReleases/8/2/index.board?bmode=read&bSeq=&aSeq= 273113&pageNo=1&rowNum=10&navCount=10&currPg= &sTarget=title&sTxt= Sung, K.-T. (2005). Care and respect for the elderly in Korea. Seoul, South Korea: Jimoondang. Yoon, H. S., Lee, K., Cha, M. H., & Kwon, J. H. (2011). The effectiveness of structured life review on life-life depression. Journal of the Korean Gerontological Society, 53, 69–121.
