Published for the British Institute of Learning Disabilities

Journal of Applied Research in Intellectual Disabilities 2016, 29, 160–171

Elderly Mothers of Adult Children with Intellectual Disability: An Exploration of a Stress Process Model for Caregiving Satisfaction Go-en Kim* and Soondool Chung† *Graduate School of Counseling, Welfare & Policy, Kwangwoon University, Seoul, Korea; †Department of Social Welfare, Ewha Womans University, Seoul, Korea

Accepted for publication 12 May 2014

Background This study examines the utility of Pearlin’s caregiving stress model for understanding the caregiving satisfaction of elderly mothers of adult children with intellectual disability. Methods Mothers living in Seoul, Kyonggi, and Incheon who were 55 years of age or older and providing care for adult children with intellectual disability aged 18 or above were selected purposively from community rehabilitation centre users. A total of 392 participants responded to the survey. The structural equation modelling method was used to evaluate the suitability of the stress process model and to test the hypotheses. Results The stress model proved to be a good fit to the data. The results showed that a mediating variable – a problem-centred coping strategy – transmitted the effect of stress variables such as recognition of ageing,

Introduction Traditionally, people with intellectual disability have been treated as burdens in Korea, and there is no social system for supporting such people in an integrated way. According to a report on the Korean disabled population (Korea Institute for Health & Social Affairs (KIHASA) 2008), the prevalence rates for disability and intellectual disability were 4.5 and 0.27% respectively among the total population, and this rate has been increasing continuously. Compared to 2005, the number of people with a disability in their 40’s had tripled in 2008, while a six-fold increase was observed for those in their 50’s due to the development of the health care system (KIHASA 2005, 2008). People with intellectual disabilities aged 20–40 account for 42.8% of total © 2015 John Wiley & Sons Ltd

establishment of permanency planning, and worries about the future on caregiving satisfaction. The relationship of adult children with intellectual disability also transmitted the effect of establishment of permanency planning on caregiving satisfaction. However, an indirect effect of an emotion-centred coping strategy was not shown. Conclusions The findings of this study shed light on the development of intervention strategies for elderly mothers who provide care permanently to adult children with intellectual disabilities. Keywords: adult children with intellectual disability, caregiving satisfaction, elderly mothers, stress process model, structural equation modelling

population of intellectual disabilities (KIHASA 2008). The growing number of people with disabilities in their 40’s and 50’s implies that their parents need to continue giving care to their adult children even though the parents themselves are ageing. In Korea, 83.6% of people with intellectual disability were looked after by their family members, mainly by their mothers (KIHASA 2008). Almost 70% of them depend on their parents for their survival even after they become adults, which turns their parents into life-long care providers (Yang 1999; Kim 2007). However, 93.8% of families have reported that they are not prepared for the future of their disabled children (Korea Institute for Health and Welfare 2011). Thus, because services relating to intellectual disabilities are largely focused on children, adults with intellectual disability living with their 10.1111/jar.12166

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elderly parents are more vulnerable when their parents get old in Korea. It is noteworthy that as main caregivers (generally mothers) get older, they experience a progressive degeneration in biological, psychological, and sociological aspects. Due to the weakened strength and the loss of income and available resources, mothers experience aggravated adversity in caring (Pruchno & Meeks 2004). The main concern for the elderly mothers of adult children with disability is that they are incapable of taking care of their child as they grow old or when they die (Botsford & Rule 2004; Seltzer et al. 2004; Heller et al. 2007). Reflecting such concerns, most of the existing studies on families of adult children with disability focused on the caregiver’s stress, depression, and psychological burden (Heller & Factor 1993; Minnes & Woodford 2005). However, some qualitative studies have revealed that caregiving experiences can also be a source of satisfaction (Kramer 1997; Son et al. 2003). More studies are now being done on the strength or countermeasurecentred approaches to enhance caregiving satisfaction (Noonan & Tennstedt 1997; Chen & Greenberg 2004). This transition suggests a new positive perspective of viewing the caregiving burden of a family with a disabled member, since caregiving satisfaction also entails psychological and emotional compensation (Lawton et al. 1991). Caregiving satisfaction comes from the feeling of happiness, self-development and strengthawareness that arise from the caring experience (Noonan & Tennstedt 1997; Chen & Greenberg 2004), and this is directly related to the general quality of life of the elderly care provider. In other words, the caregiving experience can be a positive experience that can make one’s life more valuable and make one a better person, although it requires much energy and effort from the caregiver for a long period of time. For this reason, the present study tried to focus on the positive side of the caregiving experience of elderly caregivers looking after adult children with a disability. Although the satisfaction arising from a life-long caring experience can elevate the overall quality of an elderly person’s life, few published studies have focused on the positive aspect of caregiving in Korea and adult children with intellectual disability and their mother’s caregiving satisfaction have not received much attention as an important research topic. On the contrary, in western countries the literature on caregiving satisfaction expanded to include elderly mothers in the 1990s (Heller & Factor 1993; Walker et al. 1996). However, these studies did not consider age-related variables and coping © 2015 John Wiley & Sons Ltd, 29, 160–171

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strategies for caring for adult children with intellectual disability within a comprehensive model. The purpose of the study, therefore, was to conduct a comprehensive analysis of the variables affecting the caregiving satisfaction of elderly mothers of adult children with intellectual disability by using the stress process model and verifying the elements that directly or indirectly affect caregiving satisfaction. Therefore, this study will contribute to broaden the knowledge about applying the stress process model to caregiving satisfaction.

Stress process model The stress process model by Pearlin et al. (1990) was used as a conceptual model for this study to explain elderly mothers’ satisfaction in providing care for adult children with intellectual disabilities. This model not only identifies the basic conditions that create stress but also shows how these conditions are interrelated. Stressors, mediators, and outcomes are the three elements of this model. Stressors are conditions or experiences that might cause problems to the caregiver. In this study, variables such as recognition of ageing, establishment of permanency planning, and worries about the future were selected as stressors. Becoming and being old is interpreted variously by different people. Older parents who have a negative view towards ageing could feel more stress, which leads to difficulties coping with problems in taking care of their adult children with intellectual disability (Minnes et al. 2007). On the contrary, a positive view towards ageing could positively affect caregiving satisfaction (Pruchno & Patrick 1999; Rimmerman & Muraver 2001). With regard to the establishment of permanency planning, elderly mothers who have no permanency planning in place for their children living with a disability are likely to feel even more stress (Botsford & Rule 2004), especially within less welldeveloped service systems for families with disabilities such as is the case in Korea. When elderly mothers have a permanency planning in place, their coping skill and caregiving satisfaction appear to be high (Miltiades & Pruchno 2001). Next, worries about the future are one of the most severe difficulties with this situation, leading to low caregiving satisfaction (Heller & Factor 1993; Smith et al. 1995; Pickett et al. 1997; Chung & Yu 2009). Mediators transmit the effect of stressors on caregiving satisfaction. Coping strategies and social support variables were included in this model as mediators. Coping strategies are subdivided into a

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problem-centred approach and an emotion-centred approach, given that there could be diverse strategies. A problem-centred strategy is related to the use of active coping methods, while an emotion-centred one is related to the use of passive coping methods. Positive recognition of ageing might lead to the use of more problem-centred strategies and fewer emotion-centred approaches (Folkman et al. 1987; Scazufca & Kuipers 1996). Caregivers who more prepared in terms of permanency planning for their adult children with a disability might also use more problem-centred coping strategies and fewer emotion-centred coping approaches (Krauss et al. 1996; Romanotto 2001) because they do not have enough resources to take care of their children. Coping strategies influence caregiving satisfaction in that the more use is made of emotion-centred coping strategies the less satisfaction is likely (Kim et al. 2003). In addition, in the current paper a mother’s relationship with her adult child with a disability is seen as an asset, a source of social support, breaking the long-standing classical view considering it a major cause of stress. It has been reported that these children can take care of house chores and other domestic affairs for their elderly parents (Greenberg et al. 1994). In this regard, the role of adult children with intellectual disability changes from being a dependent in childhood into providing support for their parents as they age. Therefore, a mother’s relationship with her adult child with a disability influences caregiving satisfaction. Worries about the future negatively influence the parent–child relationship (Pickett et al. 1997) and a negative recognition of ageing can also worsen their relationship (Pickett et al. 1993; Krauss et al. 1996). In addition, establishment of permanency planning influences such relationships; the higher the level of preparedness in terms of future planning, the better the relationship (Seo 2000). Thus, an appropriate supportive relationship can be seen to lead to caregiver satisfaction (Pickett et al. 1993, 1997; Krauss et al. 1996). The outcome is the result of stress process model. Caregiving satisfaction was used to as an outcome variable in this study. The research questions developed for this study are as follows:

1. What is the level of caregiving satisfaction felt by elderly mothers who are caregivers for adult children with an intellectual disability? 2. Are there any differences in caregiving satisfaction in terms of the socio-demographic characteristics of elderly mothers?

3. Do stressful circumstances and mediators have a direct impact on levels of caregiving satisfaction?

4. Do coping strategies and the relationships of adult children with a disability transmit the effect of stressors on caregiving satisfaction?

Methods Procedures and characteristics of participants Participants for this study were elderly mothers living in Seoul, Kyonggi, and Incheon who were 55 years or older and providing care for their adult children with intellectual disability aged 18 or above. Elderly mothers living with their adult children with intellectual disability in the same household were selected purposively from community rehabilitation centre users. The criteria used to select adult children with intellectual disability were based on the official diagnosis by medical doctors as stated in Korean Disability Welfare Act (2011). According to this law, people with intellectual disability are those ‘who have difficulties in personal management and social adaptation due to an imperfect mental development and low level of intelligence.’ The official diagnosis of intellectual disability is categorized according to three levels; people who need pervasive support belong to level 1, people who need limited support belong to level 2, and people who need intermittent support belong to level 3. Although this variable is not rank orders, it can be regarded as three degrees of intellectual disability level, severe (level 1), moderate (level 2), and mild (level 3). Thus, this variable is treated as a continuous variable when it introduced as a control variable in the analysis model. The survey questionnaire for this study was developed with reference to items from each scale and to demographic variables. Sensitive questions were eliminated from the questionnaire, which seems likely to impact clients to answer the question. For data collection, authors called the candidate centres and explained the purpose of this study. After getting approval from 73 centres, the authors and trained graduate students majoring social work visited the centres during occasions such as parenting education, monthly gatherings, or family seminars. They then distributed questionnaires to those elderly mothers who agreed to participate in this study. Oral consents from the participants were obtained after explaining the objectives of the research prior to administer questionnaires. Data were collected through 1 : 1 interviews with study participants between October 2009 and January 2010. Of the 713 elderly mothers approached, 548 agreed to participate. A total of 392 © 2015 John Wiley & Sons Ltd, 29, 160–171

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responses among the 548 were used for the analyses, excluding inappropriate responses and responses from mothers aged below 55 years. The age of the elderly mothers ranged from 55 to 84 years (M = 66.22, SD = 5.71) and the majority of the respondents (74.9%) were married. Nearly half of the respondents lived on a monthly income of

Elderly Mothers of Adult Children with Intellectual Disability: An Exploration of a Stress Process Model for Caregiving Satisfaction.

This study examines the utility of Pearlin's caregiving stress model for understanding the caregiving satisfaction of elderly mothers of adult childre...
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