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The Quality of Life of Family Caregivers of Adults with Intellectual Disabilities in Taiwan

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Title: The Quality of Life of Family Caregivers of Adults with Intellectual Disabilities in Taiwan
Language: English
Authors: Chou, Yueh-Ching, Lin, Li-Chan, Chang, Ai-Ling, Schalock, Robert L.
Source: Journal of Applied Research in Intellectual Disabilities. May 2007 20(3):200-210.
Availability: Blackwell Publishing. 350 Main Street, Malden, MA 02148. Tel: 800-835-6770; Tel: 781-388-8599; Fax: 781-388-8232; e-mail: customerservices@blackwellpublishing.com; Web site: http://www.blackwellpublishing.com/jnl_default.asp
Peer Reviewed: Y
Page Count: 11
Publication Date: 2007
Document Type: Journal Articles
Reports - Research
Descriptors: Family Income, Mental Retardation, Health Conditions, Quality of Life, Caregivers, Questionnaires, Foreign Countries, Census Figures, Interviews, Scores, Family (Sociological Unit), Health, Severity (of Disability), Predictor Variables, Adults
Geographic Terms: Taiwan
DOI: 10.1111/j.1468-3148.2006.00318.x
ISSN: 1360-2322
Abstract: Background: Taiwanese family carers of people with intellectual disabilities not only suffer from long-term stress but also need to cope with social difficulties. The aim of this study is to evaluate the quality of life (QOL) among family carers of people with intellectual disabilities. Materials and methods: A census interview survey was conducted in Hsin-Chu City in Taiwan and included the primary family caregivers of 792 adults with intellectual disability who were living with their families. The survey packet contained the WHOQOL-BREF Taiwan-version scale with four core domains and the activities of daily life/instrumental activities of daily life (ADL/IADL) scales. Results: The mean score for "physical" was highest and that for "environment" was lowest. The strongest predictors of caregivers QOL were the caregiver's health status, their family income and the level of severity of the intellectual disability of the adult. Conclusions: The results of the study support the need to expand services and individualize support to families of adults with intellectual disability living in family homes.
Abstractor: As Provided
Entry Date: 2009
Accession Number: EJ835586
Database: ERIC
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  Value: <anid>AN0024814654;e0301may.07;2019May30.13:03;v2.2.500</anid> <title id="AN0024814654-1">The Quality of Life of Family Caregivers of Adults with Intellectual Disabilities in Taiwan. </title> <p>Background  Taiwanese family carers of people with intellectual disabilities not only suffer from long‐term stress but also need to cope with social difficulties. The aim of this study is to evaluate the quality of life (QOL) among family carers of people with intellectual disabilities. Materials and methods  A census interview survey was conducted in Hsin‐Chu City in Taiwan and included the primary family caregivers of 792 adults with intellectual disability who were living with their families. The survey packet contained the WHOQOL‐BREF Taiwan‐version scale with four core domains and the activities of daily life/instrumental activities of daily life (ADL/IADL) scales. Results  The mean score for 'physical' was highest and that for 'environment' was lowest. The strongest predictors of caregivers QOL were the caregiver's health status, their family income and the level of severity of the intellectual disability of the adult. Conclusions  The results of the study support the need to expand services and individualize support to families of adults with intellectual disability living in family homes.</p> <p>Keywords: caregiver; family carer; intellectual disabilities; quality of life; Taiwan</p> <p>The concept of quality of life (QOL) for persons with intellectual disabilities has been explored and significant progress has been made ([<reflink idref="bib32" id="ref1">32</reflink>]; [<reflink idref="bib13" id="ref2">13</reflink>]; [<reflink idref="bib20" id="ref3">20</reflink>]; [<reflink idref="bib8" id="ref4">8</reflink>]; [<reflink idref="bib12" id="ref5">12</reflink>]; [<reflink idref="bib30" id="ref6">30</reflink>], [<reflink idref="bib31" id="ref7">31</reflink>]; [<reflink idref="bib33" id="ref8">33</reflink>]). There is substantial literature investigating the QOL of individuals with intellectual disability. However, studies of the QOL of family caregivers have been more limited and have mainly been carried out in Western societies ([<reflink idref="bib3" id="ref9">3</reflink>]; [<reflink idref="bib39" id="ref10">39</reflink>]; [<reflink idref="bib28" id="ref11">28</reflink>]; [<reflink idref="bib2" id="ref12">2</reflink>]; [<reflink idref="bib27" id="ref13">27</reflink>]; [<reflink idref="bib41" id="ref14">41</reflink>]; [<reflink idref="bib21" id="ref15">21</reflink>]; [<reflink idref="bib38" id="ref16">38</reflink>]). Significant predictors of family‐centred QOL are generally reported to be severity of disability ([<reflink idref="bib39" id="ref17">39</reflink>]; [<reflink idref="bib41" id="ref18">41</reflink>]), family income ([<reflink idref="bib41" id="ref19">41</reflink>]), the relationship with the adult ([<reflink idref="bib18" id="ref20">18</reflink>]) and age ([<reflink idref="bib28" id="ref21">28</reflink>]).</p> <p>The negative impact of having a child with intellectual disability in Taiwan is exacerbated to a great extent by the cultural context ([<reflink idref="bib4" id="ref22">4</reflink>]; [<reflink idref="bib22" id="ref23">22</reflink>]; [<reflink idref="bib40" id="ref24">40</reflink>]; [<reflink idref="bib7" id="ref25">7</reflink>]). Among the family, the primary family carer particularly not only has to suffer from the long‐term stress of caring but also needs to be able to cope with the social difficulties that result from people's strange stares together with a feeling of being devalued by society ([<reflink idref="bib5" id="ref26">5</reflink>]). For example, Chinese people are very concerned about other's reactions or social expectations such as 'regard for face' ([<reflink idref="bib19" id="ref27">19</reflink>]). Thus, Chinese people often do something because they are expected to do so, not because they want to do so ([<reflink idref="bib15" id="ref28">15</reflink>]). In addition, for the Chinese, face is lost through an unsuccessful social performance ([<reflink idref="bib19" id="ref29">19</reflink>]; [<reflink idref="bib15" id="ref30">15</reflink>]). If families have a member with intellectual disability and define this as an unsuccessful social performance, the families might suffer by bearing a stigma and losing ancestral face ([<reflink idref="bib7" id="ref31">7</reflink>]).</p> <p>As parents become older, adults with intellectual disability are more likely to be placed in residential settings ([<reflink idref="bib34" id="ref32">34</reflink>]). The importance of the current study is that, up to the present, there have been very few systematic studies of the QOL of families in Taiwan who have adults with intellectual disability living at home. Reflective of this need, there has been considerable development recently of family‐related QOL questionnaires. Examples can be found in a range of publications such as those of [<reflink idref="bib2" id="ref33">2</reflink>], [<reflink idref="bib26" id="ref34">26</reflink>], [<reflink idref="bib27" id="ref35">27</reflink>], [<reflink idref="bib1" id="ref36">1</reflink>] and [<reflink idref="bib39" id="ref37">39</reflink>].</p> <p>The purpose of the present study was to examine the QOL of family caregivers of co‐resident adults with intellectual disability in Taiwan and to investigate differences in QOL in relation to background variables such as age, the perceived health of the caregiver, the adults' severity of disability and cultural context. Furthermore, we also sought to examine whether such variables predict the family caregiver's subjective QOL. The study was conducted as a census survey in a city and utilized a culturally valid measurement tool, the WHOQOL‐BREF Taiwan version, to examine the participants' QOL. This approach allows a comparison across target populations in society.</p> <hd id="AN0024814654-2">Materials and Methods</hd> <p></p> <hd id="AN0024814654-3">Participants and procedures</hd> <p></p> <hd id="AN0024814654-4">Participants</hd> <p>A census interview survey of family caregivers of adults with intellectual disability was sponsored by the Hsin‐Chu City Government; participants were primary family caregivers of adults with intellectual disability registered in Hsin‐Chu City.1 Primary family caregivers of persons with intellectual disabilities aged over 15 years2 were all invited to participate in the study. An invitation letter describing the survey was sent by the Hsin‐Chu City Government to all families with family members with intellectual disability who were over 15 years of age. Following this, 24 trained interviewers approached family caregivers who met the participation criteria and asked them if they would like to participate in the study. After obtaining informed consent,3 these persons were then enrolled in the study and interviewing took place at their homes.</p> <p>Taiwan has a population of 23 million people and 80 000 persons have been diagnosed with intellectual disabilities (3.4 per thousand). Hsin‐Chu City is one of 25 state local authorities and is divided into three administrative districts based on their geographic location, namely, the new urban area, the old town and the rural district. The city has a population of 385 771 and 1298 persons have been diagnosed with intellectual disability (3.36 per thousand); 163 of the 1048 adults with intellectual disability aged over 15 years listed by the Hsin‐Chu City Government (15.5%) could not be contacted (113 with the wrong address or had moved, 20 were deceased, five were missing); 54 (5.2%) declined to take part in the study and 39 (4.7%) had left the family and now lived in an institution or a group home. The remaining 792 (75.6%) primary family caregivers all took part and completed the study interview over the period from June to October 2004.</p> <p>As shown in Table 1, there were 445 males (56.2%) among these adults who lived with families; the sample ranged in age from 0 to 85 years (mean 31.9, SD 12.9). The majority (48.0%) of the adults lived in the new urban area, and 34.1% were diagnosed with severe and profound disabilities. The average score for the adults' ADL was 93.2 (SD 16.6) with a range from 0 to 100 and the adults' IADL was 10.6 (SD 6.4) with a range from 0 to 24. At the time of the interview, 56.1% of the adults remained at home (i.e. did not attend school or job). Most family carers of the adults were biological mothers (45.4%) and female (61.4%). The carers ranged in age from 16 to 86 years (mean 52.7, SD 14.4); 49.9% of carers were illiterate or had education up to primary school and 41.0% worked full time. Among the families, 33.0% were recipients of low‐income family subsidy.4 The majority (61.5%) of the carers were Taiwanese and Taoist/Buddhist (82.0%); 69.0% of them had never been in contact with related groups or associations. With respect to their health, 22.7% rated themselves as being in 'very poor health' and 'poor health' and 36.6% in 'fair health'.</p> <p>1  Demographics of participants and bivariate analyses (differences between adults and family carers' demographic data, family perception and family carers' QOL) (n = 792)</p> <p> <ephtml> <table><tbody valign="top"><tr><td>Variables</td><td>Demographics</td><td>QOL</td></tr><tr><td>Adults</td><td>Mean (SD) range</td><td><italic>r</italic><sup>1</sup></td><td /><td /></tr><tr><td>Age</td><td>31.9 (12.9) 15–85</td><td>−0.02</td><td /><td /></tr><tr><td>Activities of daily life (ADL)</td><td>93.2 (16.6) 0–100</td><td>0.02</td><td /><td /></tr><tr><td>Instrumental activities of daily life (IADL)</td><td>10.6 (6.4) 0–24</td><td>0.04</td><td /><td /></tr><tr><td /><td>%</td><td>Mean</td><td><italic>F</italic>‐test</td><td>Scheffe</td></tr><tr><td>Geographic areas</td></tr><tr><td> Old town</td><td>30.1</td><td>87.36</td><td valign="top">1.00</td><td /></tr><tr><td> New urban</td><td>48.0</td><td>88.70</td><td /></tr><tr><td> Rural</td><td>22.0</td><td>89.30</td><td /></tr><tr><td>Sex</td></tr><tr><td> Male</td><td>56.2</td><td>88.13</td><td valign="top">0.45</td><td /></tr><tr><td> Female</td><td>43.8</td><td>88.83</td><td /></tr><tr><td>Severity of disability</td></tr><tr><td> Severe and profound</td><td>34.1</td><td>89.57</td><td valign="top">1.74</td><td /></tr><tr><td> Moderate</td><td>31.4</td><td>88.58</td><td /></tr><tr><td> Mild</td><td>34.5</td><td>87.21</td><td /></tr><tr><td>Current formal services linkage or remaining home</td></tr><tr><td> Remain home (no school/no job)</td><td>56.1</td><td>87.46</td><td valign="top">5.87**</td><td valign="top">(2) > (1)</td></tr><tr><td> School</td><td>10.9</td><td>94.47</td></tr><tr><td> Employed</td><td>23.7</td><td>87.71</td></tr><tr><td> Day care</td><td>9.4</td><td>88.97</td></tr><tr><td>Family carers</td><td>Mean (SD) range</td><td><italic>r</italic><sup>1</sup></td><td /><td /></tr><tr><td>Age</td><td>52.7 (14.4) 16–86</td><td>−0.25**</td><td /><td /></tr><tr><td /><td>%</td><td>Mean</td><td><italic>F</italic>‐test</td><td>Scheffe</td></tr><tr><td>Sex</td></tr><tr><td> Male</td><td>38.6</td><td>89.13</td><td valign="top">1.13</td><td /></tr><tr><td> Female</td><td>61.4</td><td>88.00</td><td /></tr><tr><td>Kinship</td></tr><tr><td> Father</td><td>22.1</td><td>89.79</td><td valign="top">4.93**</td><td valign="top">(3) > (2); (3) > (4)</td></tr><tr><td> Mother</td><td>45.4</td><td>87.04</td></tr><tr><td> Sibling</td><td>12.4</td><td>93.01</td></tr><tr><td> Other relatives</td><td>20.2</td><td>87.63</td></tr><tr><td>Education</td></tr><tr><td> Illiterate/primary</td><td>49.9</td><td>84.06</td><td valign="top">63.69***</td><td valign="top">(2) > (1); (3) > (1); (3) > (2)</td></tr><tr><td> Secondary/high</td><td>38.0</td><td>90.21</td></tr><tr><td> Beyond high school</td><td>12.0</td><td>100.77</td></tr><tr><td>Ethnicity</td></tr><tr><td> Taiwanese</td><td>61.5</td><td>89.00</td><td valign="top">1.00</td><td /></tr><tr><td> Hakka</td><td>20.9</td><td>87.22</td><td /></tr><tr><td> Others (mainlander, indigenous)</td><td>17.6</td><td>87.98</td><td /></tr><tr><td>Religion</td></tr><tr><td> Taoism/Buddhism</td><td>82.0</td><td>88.01</td><td valign="top">2.63</td><td /></tr><tr><td> Christianity</td><td>3.8</td><td>93.81</td><td /></tr><tr><td> None</td><td>14.2</td><td>89.60</td><td /></tr><tr><td>Marital status</td></tr><tr><td> Married</td><td>77.0</td><td>88.99</td><td valign="top">4.08*</td><td /></tr><tr><td> Single/separated/divorced</td><td>23.0</td><td>86.44</td><td /></tr><tr><td>Employment</td></tr><tr><td> Full time</td><td>41.0</td><td>92.06</td><td valign="top">20.94***</td><td valign="top">(1) > (3); (1) > (2)</td></tr><tr><td> Part time</td><td>2.9</td><td>80.16</td></tr><tr><td> Unemployed</td><td>56.1</td><td>85.96</td></tr><tr><td>Family income</td></tr><tr><td> Less than US$630</td><td>43.2</td><td>82.71</td><td valign="top">83.95***</td><td valign="top">(3) > (1); (3) > (2); (2) > (1)</td></tr><tr><td> US$631–1270</td><td>34.6</td><td>88.96</td></tr><tr><td> over US$1271</td><td>22.2</td><td>98.68</td></tr><tr><td>Whether receiving low‐income family subsidy (poverty level)<sup>2</sup></td></tr><tr><td> Poor</td><td>1.4</td><td>83.89</td><td valign="top">2.51</td><td /></tr><tr><td> Near poor</td><td>31.6</td><td>86.85</td><td /></tr><tr><td> Not poor</td><td>67.0</td><td>89.22</td><td /></tr><tr><td>Join/contact‐related associations</td></tr><tr><td> Joined</td><td>15.7</td><td>91.96</td><td valign="top">4.76**</td><td valign="top">(1) > (3); (1) > (2)</td></tr><tr><td> Contacted w/o join</td><td>15.3</td><td>86.77</td></tr><tr><td> None</td><td>69.0</td><td>87.99</td></tr><tr><td>Self‐evaluation of health</td></tr><tr><td> Poor/very poor</td><td>22.7</td><td>74.44</td><td valign="top">192.11***</td><td valign="top">(3) > (1); (3) > (2); (2) > (1)</td></tr><tr><td> Neither poor nor good</td><td>36.6</td><td>88.17</td></tr><tr><td> Good/very good</td><td>40.7</td><td>96.00</td></tr></tbody></table> </ephtml> </p> <p>1 *<emph>P</emph> < 0.05; **<emph>P</emph> < 0.01; ***<emph>P</emph> < 0.001.</p> <ulist> <item>2 <sups>1</sups>Pearson's correlation coefficient.</item> <item>3 <sups>2</sups>For family assessed with 'poor' poverty status whose family member diagnosed with profound, severe and moderate disabilities would receive monthly family care subsidy 'NT$7000' (US$200) and for those family member diagnosed with mild would receive 'NT$4000' (US$120). For family assessed with 'near poor' poverty status whose family member diagnosed with profound, severe and moderate disabilities would receive monthly family care subsidy 'NT$4000' (US$120) and for those family member diagnosed with mild would receive 'NT$3000' (US$90) ([<reflink idref="bib9" id="ref38">9</reflink>]).</item> </ulist> <hd id="AN0024814654-5">Interviewers</hd> <p>Interviewers were recruited from the Department of Social Work and Department of Special Education from various colleges and among practitioners from NGOs in Hsin‐Chu City; none of them were employed by the Hsin‐Chu City Bureau. A 1‐day workshop on interview skills and knowledge related to the survey was provided for the candidate interviewers. In the end, 10 college students and 14 practitioners were employed as interviewers in the study. The survey packet contained the WHOQOL‐BREF Taiwan version scale and demographic questions including activities of daily life (ADL) and instrumental activities of daily life (IADL) scales (see below). Before launching the study, a pilot test of five family caregivers in Taipei City was carried out with the aim of testing the feasibility/time scale of the interview and to allow the identification of any possible problems, either with the layout of the questionnaires or with their completion. The questions, including the adult's characteristics and the ADL/IADL scales were all answered by the primary family caregivers.</p> <hd id="AN0024814654-6">Instruments</hd> <p></p> <hd id="AN0024814654-7">WHOQOL‐BREF Taiwan version</hd> <p>The World Health Organization (WHO) defines QOL as 'individuals' perception of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards and concerns.''It is a broad ranging concept affected in a complex way by the person's physical health, psychological state, level of independence, social relationships, personal beliefs and their relationship to salient features of their environment.' ([<reflink idref="bib42" id="ref39">42</reflink>], p. 1). The WHOQOL‐BREF is a sound, cross‐culturally valid assessment of QOL ([<reflink idref="bib29" id="ref40">29</reflink>]; [<reflink idref="bib36" id="ref41">36</reflink>]). The WHOQOL‐BREF was translated into Chinese and two additional appropriate culture‐related items were added by Taiwanese scholars ([<reflink idref="bib45" id="ref42">45</reflink>]). This WHOQOL‐BREF Taiwan version has been utilized to measure QOL in various population groups including patients and their primary caregivers, the elderly, labourers, government officials, elderly caregivers of grandchildren and victims of an earthquake disaster as well as the general healthy Taiwanese population ([<reflink idref="bib44" id="ref43">44</reflink>]).</p> <p>The WHOQOL‐BREF is an abbreviated 26‐item assessment developed as a shortened version of the WHOQOL‐100 and contains four domains: physical, psychological, social relationships and environment ([<reflink idref="bib42" id="ref44">42</reflink>], p. 4; [<reflink idref="bib43" id="ref45">43</reflink>]). Two new facets involving two items were included in the WHOQOL‐BREF Taiwan version and these concerned 'being respected/accepted' and 'eating/food'; these were classified into the 'social relationships' and 'environment' domains, respectively ([<reflink idref="bib45" id="ref46">45</reflink>], [<reflink idref="bib44" id="ref47">44</reflink>]). The first of the added items asks in Chinese 'How do you feel about saving face and being respected?' There is a Chinese quotation 'food is all important to people' and therefore the second added item asks in Chinese 'Do you get enough of the foods that you like to eat?' For the questionnaire as a whole, a five‐point Likert scale was used and the total possible score ranges from 28 to 140 assessing how the caregiver feels about her/his QOL over last 2 weeks. A higher score indicates a better QOL as shown in the Appendix.</p> <p>The reliability and validity of the scale have been reported in a previous study that included 1068 from the Taiwanese general population. Internal consistency estimates of reliability indicated that the WHOQOL‐BREF Taiwan version yielded a Cronbach's alpha value of 0.91 ranging from 0.70 to 0.80 at the domain level (all <emph>P</emph> < 0.001). In addition, the content validity coefficients were in the range of 0.58 and 0.78 for item–domain correlations and 0.51 to 0.64 for inter‐domain correlations (all <emph>P</emph> < 0.01) ([<reflink idref="bib45" id="ref48">45</reflink>]). In this study, which is made up of 792 samples, internal consistency estimates of the reliability indicated that the WHOQOL‐BREF Taiwan version yielded a Cronbach's alpha value of 0.93 for the 28 items, with a range from 0.69 to 0.83 at the domain level.</p> <hd id="AN0024814654-8">The Barthel Index, and the Lawton and Brody Index</hd> <p>Besides the WHOQOL‐BREF Taiwan‐version scale, three additional data sets were obtained, namely, socio‐demographic data on the adults and the family caregivers, the score for ADL, and the score for IADL. The Barthel Index, Taiwanese version, assesses the basic activities of daily life (ADL): feeding, bathing, personal hygiene, dressing and undressing, toiletting, use of wheelchair, transfer from wheelchair to bed and going up/downstairs. The Philadelphia, Lawton and Brody Index, Taiwanese version, measures IADL: the ability to use the telephone, go shopping, do housework, wash clothes, use a means of transport, responsibility for medication and the ability to use money. The ADL and IADL scales have been used as a tool to measure eligibility when people with disabilities and their families apply for the Taiwan government subsidy given for home care since 2002. The alpha reliability of the present study ADL was 0.92 and IADL was 0.87.</p> <hd id="AN0024814654-9">Data analysis</hd> <p>The data sets were analysed by the Statistical Package for Social Sciences (SPSS), Version 11.0. A descriptive analysis was made of all variables. The qualitative variables were described by the frequency and percentage of each category; the quantitative variables were analysed by mean and standard deviation values assuming a normal distribution was followed. A univariate <emph>F</emph>‐test was used to detect differences between the participants' and adults' characteristics for QOL. Pearson's correlation coefficient was used to calculate the differences in other interval socio‐demographic data such as the adult's ADL, the adult's IADL, the family caregiver's age and the adult's age compared with the participants' QOL. Stepwise regression was used in order to identify factors affecting family caregiver's subjective QOL.</p> <hd id="AN0024814654-10">Results</hd> <p>A number of general statements can be made about the results presented in Tables 1 and 2. First, when the adults were undergoing schooling, their family caregiver's QOL was perceived to be higher than that for adults who remained at home (<emph>P</emph> < 0.01). The family caregiver's demographic variables significantly and positively influenced the family caregiver's QOL including the caregivers being younger, being the adults' sibling rather than parent, having a higher educational level, being married, having a full‐time job, having a higher family income, being involved in a related disability group or organization, and feeling healthy by their own evaluation. Especially notable in terms of a high score were the family caregivers' education level, employment status, family income and self‐evaluation of health, all of which were highly associated with her/his QOL (<emph>P</emph> < 0.001).</p> <p>2  Comparison with Taiwan General Population (mean and standard deviations of QOL score in four domain variables)</p> <p> <ephtml> <table><thead valign="bottom"><tr><th valign="bottom">Domain of measure</th><th>This study (<italic>n</italic> = <italic>792)</italic></th><th>Yao<sup>3</sup> 2004 (<italic>n</italic> = <italic>132 045)</italic></th></tr><tr><th>Mean</th><th>SD</th><th>Mean</th><th>SD</th></tr></thead><tbody valign="top"><tr><td>D1 Physical health</td><td>13.59</td><td>2.59</td><td>15.05</td><td>2.08</td></tr><tr><td>D2 Psychological</td><td>12.11</td><td>2.33</td><td>13.61</td><td>2.27</td></tr><tr><td>D3 Social relationships</td><td>12.98</td><td>2.29</td><td>14.39</td><td>2.20</td></tr><tr><td>D3 Social relationships (Tw)<sup>1</sup></td><td>12.84</td><td>2.19</td><td>14.01</td><td>2.10</td></tr><tr><td>D4 Environment</td><td>11.92</td><td>2.16</td><td>13.00</td><td>2.15</td></tr><tr><td>D4 Environment (Tw)<sup>2</sup></td><td>12.09</td><td>2.15</td><td>13.21</td><td>2.09</td></tr></tbody></table> </ephtml> </p> <ulist> <item>4 <sups>1</sups>D3 (TW) means an item related to Taiwanese culture, face love, added; D3 means the original WHOQOL‐BREF version in the domain of social relationships.</item> <item>5 <sups>2</sups>D4 (Tw) means an item related to Taiwanese culture, food satisfaction, added; D4 means the original WHOQOL‐BREF version in the domain of environment.</item> <item>6 <sups>3</sups>Survey of Taiwanese General Population (<emph>n</emph> = 132,045) ([<reflink idref="bib44" id="ref49">44</reflink>]).</item> </ulist> <p>Second, as shown in Table 2, analysis of the four domains of the WHOQOL‐BREF Taiwan version found that the mean score in the physical was the highest (mean 13.59, SD 2.59), this followed by social relationships (mean 12.84, SD 2.19) and psychological (mean 12.11, SD 2.33). Environment (mean 12.09, SD 2.15) was the lowest as it was among the Taiwanese general population.</p> <p>To assess the predictors for family caregiver's QOL, we conducted stepwise regressions using the following variables: (<reflink idref="bib1" id="ref50">1</reflink>) the adult's characteristics data, namely, geographic area, gender, age, severity of disability, ADL, IADL and whether the adult linked to the formal service systems currently or remained at home; and (<reflink idref="bib2" id="ref51">2</reflink>) the family caregiver's characteristics data, namely, age, gender, ethnicity, kinship to the adult, education level, employment status, marital status, religion, monthly family income, whether involved in disability related groups and self‐rated health. As noted in Table 3, eight variables significantly predicted the impact on the QOL of family caregivers and these were: family caregiver's self‐rated health, monthly family income, adult's severity of disability, adult's IADL, caregiver's education level, geographic area, caregiver's ethnicity and employment status. Family caregivers' self‐rated health, family monthly income and adult's severity of disability were the most significant predictors for the dependent variable (<emph>P</emph> < 0.001).</p> <p>3  Multiple stepwise regression analyses for variables predicting QOL in family carers</p> <p> <ephtml> <table><thead valign="bottom"><tr><th>Measure</th><th>Step</th><th>Variables</th><th><italic>R</italic><sup>2</sup></th><th><italic>β</italic></th><th>SE <italic>b</italic></th><th><italic>B</italic></th></tr></thead><tbody valign="top"><tr><td valign="top">Total QOL</td><td>1</td><td>Carer's self‐evaluation in health</td><td>0.358</td><td>0.492</td><td>0.424</td><td>6.996***</td></tr><tr><td>2</td><td>Family income</td><td>0.434</td><td>0.257</td><td>0.402</td><td>3.399***</td></tr><tr><td>3</td><td>Severity of disability</td><td>0.447</td><td>0.165</td><td>0.444</td><td>2.209***</td></tr><tr><td>4</td><td>Instrumental activities of daily life</td><td>0.454</td><td>0.105</td><td>0.072</td><td>0.229**</td></tr><tr><td>5</td><td>Carer's education level</td><td>0.459</td><td>0.094</td><td>0.352</td><td>1.047**</td></tr><tr><td>6</td><td>Geographic area (rural)</td><td>0.464</td><td>0.073</td><td>0.907</td><td>2.452**</td></tr><tr><td>7</td><td>Ethnicity (Hakka)</td><td>0.468</td><td>−0.068</td><td>0.913</td><td>−2.298*</td></tr><tr><td>8</td><td>Employment status (part time)</td><td>0.472</td><td>−0.060</td><td>2.148</td><td>−4.822*</td></tr></tbody></table> </ephtml> </p> <ulist> <item>7 A total of 18 independent variables including adult' geographic area of habitat, gender, age, severity of disability, ADL, IADL, current formal service linkage or remaining home; the family carer's age, gender, ethnicity, education level, kinship of the adult, employment status, marital status, religion, monthly family income, whether involved in related groups and self‐rated health were used in a stepwise selection process.</item> <item>8 Adult and carer's gender coded as male or female; geographic area coded as new urban, old town or rural areas; current systems linkage coded as remaining home, school, employed and day care; carer's ethnicity coded as Taiwanese, Hakka and others; kinship coded as mother, father, sibling and others; religion coded as Taoism/Buddhism, Christianity and others; marital status coded as married and single/separated/divorced; employment status coded as full time, part time and unemployed; and whether joined any parental associations coded as yes or no, as dichotomy variables. Adult and carer's age and education, adult's level of disability, adult's function in ADL and IADL, family income, and caregiver's self‐rated health coded as ordinal variables and a higher score indicates older in age, higher level of education, higher income, higher level of disability, higher function in ADL and IADL, and better in health.</item> <item>9 *<emph>P</emph> < 0.05; **<emph>P</emph> < 0.01; ***<emph>P</emph> < 0.001.</item> </ulist> <hd id="AN0024814654-11">Discussion</hd> <p>This study found that for adults with intellectual disability living with their families in the community, the main family caregivers were female (61.4%) and the adult's parents (67.5%), particularly their mothers (45.4%). The characteristics of the adults and the family caregivers in the present study are consistent with national and local government surveys conducted to study persons certified with disabilities in Taiwan ([<reflink idref="bib10" id="ref52">10</reflink>]; [<reflink idref="bib14" id="ref53">14</reflink>]; [<reflink idref="bib23" id="ref54">23</reflink>]; [<reflink idref="bib6" id="ref55">6</reflink>]) (Table 1).</p> <p>As shown in Table 2, compared with the Taiwanese general population's QOL, the family caregivers' overall QOL is lower for each of the four domains ([<reflink idref="bib44" id="ref56">44</reflink>]). When comparing the four domains within the group, the findings were consistent with [<reflink idref="bib44" id="ref57">44</reflink>]. When the two additional items were eliminated from the WHOQOL‐BREF Taiwan version, in a similar way, the mean score for the domain 'social relationships' of the two groups (family caregivers and Taiwan general population) was raised and, in contrast, the mean score of the domain 'environment' was decreased. This implies that the item 'face' has a negative impact on the caregivers' and as well as Taiwan general population's QOL, unlike 'food satisfaction', which had a positive impact. Therefore, 'regard for face' or 'feeling respected' is an important component of the domain 'social relationships' for family caregivers implying that local culture is important as was found in [<reflink idref="bib5" id="ref58">5</reflink>] and also indicated by [<reflink idref="bib7" id="ref59">7</reflink>]. Thus, in order to promote the caregivers' QOL, it may be necessary to help the family caregivers to deal with the 'regard for face' issue, which results from having a member of the family with intellectual disability. Except for 'food satisfaction', in general, the 'environment' aspect of these family caregivers also needs to be promoted.</p> <p>The findings of this study reveal that there is no significant interactive effect between the adult's severity of disability, including scores for ADL and IADL, and the QOL among family caregivers. Rather, the adult's severity of disability and IADL were two of the eight significant predictors of the dependent variables. These two variables showed an inconsistent pattern, with the caregivers' QOL being higher for adults with severe and profound disabilities and a higher score for IADL, and a lower score for caregivers of adults with mild disability and a lower score of the IADL. This result contradicts those of [<reflink idref="bib37" id="ref60">37</reflink>] and [<reflink idref="bib41" id="ref61">41</reflink>]. It has been pointed out by senior practitioners that this is possibly related to current policies and the medical diagnosis system. The classification and definition of disability are conducted by the health authorities and the severity of the disability is categorized in accordance with the case's IQ score and social adaptation skills. When adults are diagnosed with severe or profound disability, the family becomes eligible to receive a higher level of governmental subsidy than adults diagnosed with mild disabilities. It has also been suggested that the family caregivers of adults with severe or profound disabilities might receive much more formal support than the caregivers of adults with mild or moderate disabilities, resulting in a differential impact on the QOL of the family caregivers. In addition, the social services for these adults and families are not completely continuous or universal at present in Hsin‐Chu City. Once an adult, even for an adult with mild disability, completes his/her compulsory education in junior high school (age 15 years), this does not necessarily lead to access to vocational services. Doubtless, the adults going to school or those employed have a significant positive role in the caregiver's QOL (<emph>P</emph> < 0.01) (Table 1). Although the right to receive education and being employed is enshrined in the Taiwanese Constitution, people with intellectual disability were easily rejected by the educational and vocational systems before the 1997 Disability Act. Based on the Special Education Act amended in 1997, the right to receive special education was legislated for persons with disability from pre‐school to secondary school (3–15 years); furthermore, transition services from the education to vocational system were also legislated in the same Act.</p> <p>As shown in Table 1, the present study found that only 10.9% of the adults went to school and 23.7% were employed; however, over 65% of the adults suffered from only mild or moderate disabilities. The results suggest that either the family caregivers have a low level of expectations with respect to their family members with disabilities or there is a lack of formal services, as discussed previously. Further research should focus on these issues. In addition, for caregivers with a higher socioeconomic status (SES) (family income, educational level) and who are employed full time, there was a higher perceived QOL compared with caregivers from a lower level of SES and who are employed part time. Thus, we found that family caregivers' family income, their educational level and their work status were significant predictors of the family caregivers' subjective QOL. Caregivers who work part time may have a lower level of education and further, working part time might be a common occurrence among caregivers in low‐income families. These results are also in agreement with those from Western studies ([<reflink idref="bib35" id="ref62">35</reflink>]; [<reflink idref="bib11" id="ref63">11</reflink>]; [<reflink idref="bib41" id="ref64">41</reflink>]).</p> <p>In addition, caregivers who were single, including divorced or widowed, or mothers, had a lower assessed QOL than caregivers who were married or siblings (<emph>P</emph> < 0.05). The former is consistent with the findings of [<reflink idref="bib35" id="ref65">35</reflink>] and [<reflink idref="bib25" id="ref66">25</reflink>]. This study also found that family caregivers who had joined a related association had a higher QOL than caregivers who were not so involved (<emph>P</emph> < 0.01). However, the caregivers' marital status, the kinship with the adult and whether they were involved in related groups were not significant predictors of the QOL. As a result, the family caregivers' SES background is more strongly associated with their QOL than factors such as their marital status, kinships with the adult and related group involvement.</p> <p>The caregivers' self‐evaluation of their health was the best predictor of the family caregiver's QOL (<emph>P</emph> < 0.001). Thus, an 'ageing family', particularly one with a frail caregiver, would seem to be at high risk in Taiwan, meaning that elderly caregivers with poor health are vulnerable as well as ageing adults with intellectual disability. The results are consistent with studies in Western society ([<reflink idref="bib35" id="ref67">35</reflink>]; [<reflink idref="bib17" id="ref68">17</reflink>]).</p> <p>As shown in Table 1, geographic area and caregiver's ethnicity did not show a significant association with the family caregiver's QOL; however, based on the regression model in this study, two variables are significant predictors and impact on the family caregiver's QOL. It would seem that families in rural areas or those that are Taiwanese receive much more support and sharing of care work than families in urban areas or Hakka families. As a consequence, family caregivers from the rural areas have a higher perceived level of QOL than those from the two urban areas; interestingly, this result agrees with similar finding in [<reflink idref="bib16" id="ref69">16</reflink>] study of caregivers of the elderly in the US.</p> <p>The finding that a low social status, a low health status and a need for instrumental support affected the family caregivers' QOL is important because it has implications for policy and research in Taiwan. A policy of 'less eligibility' is the current Taiwanese welfare policy; based on this family subsidy, family support services and educational/vocational resources are allocated based on the adult's level of disability and functional loss together with her/his family income. Based on the Act, the family subsidy, family supportive services and adult's educational/vocational resources should be provided and allocated by the local authorities; but they only have a small effect on these adults and their families. In order to support the adults living in the community and to improve the QOL of family caregivers, the availability and accessibility of adult's educational/vocational systems and family support programmes need to be modified and extended, to include adults with mild disability and low level function in IADL. In addition, support for family caregivers with a low social and health status is also required.</p> <p>To sum up, future studies should incorporate qualitative components to explore possible reasons for the observed differences in QOL between families whose adults have different levels of severity of disability and the effect of geographic location and ethnicity. Furthermore, there is a need to understand how family caregivers of adults living with families receive social support based on differences in the level of adults' severity of disability and how this interacts with geographic area and ethnicity.</p> <p>Several limitations of the present study need to be acknowledged. First, as the data were obtained only from Hsin‐Chu City, this study's results may not be generalizable to the population of Taiwan as a whole. Second, we did not obtain data regarding other potentially important variables such as the number of dependents at home, the adequacy of the participants' housing and the family structure (nuclear or extended family). These variables may be important components associated with the participants' QOL. Third, we need to note that the original approach to scoring the WHOQOL‐BREF including the Taiwan version was at the domain level. According to [<reflink idref="bib24" id="ref70">24</reflink>], the profile of the four WHOQOL‐BREF domains is a more adequate expression of QOL than the total score for all items. In the present study, we utilized the total score of all 28 items to analyse the interactional and predictive effects between the adults and caregivers' sociodemographic data and caregivers' QOL.</p> <p>We anticipate that there is relevance to future policy in the questions addressed in this study within the national and local authority policy‐making areas. At both the national and local government levels, policy leaders confront increasing problems associated with availability, accessibility, and accountability when allocating community‐based and family‐centred resources aimed at promoting the QOL of family caregivers, especially within the national level social assistance and services programmes. The data from future research studies needs to focus on the questions posed in this initial study and should help to create an informed debate on eligibility to financial resources and services. In addition, future research might need to be conducted in a way that emphasizes how the family as a whole is impacted on by a member with intellectual disability ([<reflink idref="bib2" id="ref71">2</reflink>]; [<reflink idref="bib26" id="ref72">26</reflink>]; [<reflink idref="bib27" id="ref73">27</reflink>]; [<reflink idref="bib38" id="ref74">38</reflink>]).</p> <p>In conclusion, the results of this study highlight that both adults and caregivers' sociodemographic backgrounds are important predictors of family caregivers' subjective QOL and the strongest predictors are the caregiver's health, their social status and the adult's severity of disability. Variables, including social and demographic factors, which are associated with social systems, were identified as affecting the QOL of family caregivers. In combination, these factors help establish, maintain and change the environment of the family caregivers including how they deal with concern about 'regard for face'. This study indicated that promoting the QOL of these family caregivers is necessary, particularly with respect to their environment and social relationships; specifically, it is necessary to provide the adults with intellectual disability with related support programmes and family supportive services in such a way that help is given to the caregivers in terms of instrumental and economic support together with health and social care. The results of this study have important implications for future research, policy and practice in disability programmes across Taiwan as well as on programmes affecting how to support family primary caregivers of adults with intellectual disability in Taiwan.</p> <hd id="AN0024814654-12">Acknowledgments</hd> <p>This research was supported by the Hsin‐Chu City Government in Taiwan. The authors would like to thank all those individuals who took time to participate in this study.</p> <hd id="AN0024814654-13">Correspondence</hd> <p>Any correspondence should be directed to Yueh‐Ching Chou, Institute of Health and Welfare Policy, National Yang‐Ming University 155, Li‐Nong St., Sec.2, Peitou, Taipei, 112 Taiwan (e‐mail: choucyc@ym.edu.tw).</p> <hd id="AN0024814654-14">Appendix</hd> <p>WHOQOL‐BREF Taiwan Version (Yao et al. 2004)</p> <p> <ephtml> <table><tbody valign="top"><tr><td> 1. In general, how would you evaluate your quality of life?</td></tr><tr><td> 2. In general, are you satisfied with your health?</td></tr><tr><td> 3. How satisfied the sleep you get?</td></tr><tr><td> 4. Are you satisfied with your ability to perform routine daily activities?</td></tr><tr><td> 5. Are you satisfied with your working ability?</td></tr><tr><td> 6. Are you satisfied with yourself?</td></tr><tr><td> 7. Are you satisfied with your personal relationships?</td></tr><tr><td> 8. Are you satisfied with the support you get from your friends?</td></tr><tr><td> 9. Are you satisfied with your living conditions?</td></tr><tr><td>10. Are you satisfied with how convenient it is for you to get medical services?</td></tr><tr><td>11. Are you satisfied with the transportation you use?</td></tr><tr><td>12. Do you feel your life has meaning?</td></tr><tr><td>13. Do you feel respected/face saved by others?<sup>1</sup></td></tr><tr><td>14. Do you need medical treatment to cope with your daily life?<sup>2</sup></td></tr><tr><td>15. To what extent do you feel that you pain hinders you in doing what you need to do?<sup>2</sup></td></tr><tr><td>16. Do you enjoy your life?</td></tr><tr><td>17. Do you have the opportunity to take leisure time?</td></tr><tr><td>18. How safe do you feel in your daily life?</td></tr><tr><td>19. Do you line in a healthy environment (e.g. pollution, climate, noise, transportation)?</td></tr><tr><td>20. Can you accept your appearance?</td></tr><tr><td>21. Is it convenient for you to get the daily information you need?</td></tr><tr><td>22. Do you have enough money for whatever you need?</td></tr><tr><td>23. Do you have enough energy for your daily life?</td></tr><tr><td>24. How good is your ability to concentrate?</td></tr><tr><td>25. How is your ability to get around?</td></tr><tr><td>26. Are you usually able to get the things you like to eat?<sup>1</sup></td></tr><tr><td>27. Do you often have negative feelings (for example: depression, despondency, anxiety, anguish)?</td></tr><tr><td>28. Are you satisfied with your sexual life?<sup>2</sup></td></tr></tbody></table> </ephtml> </p> <ulist> <item>10 Five‐point Likert scale: 1, very poor; 2, poor; 3, neither poor nor good; 4, good; 5, very good.</item> <item>11 <sups>1</sups>The item related to Taiwanese culture, face love and food satisfaction, added from the original WHOQOL‐BREF by Yao <emph>et al.</emph> (2004).</item> <item>12 <sups>2</sups>The item coded the opposite way.</item> </ulist> <ref id="AN0024814654-15"> <title> Footnotes </title> <blist> <bibl id="bib1" idref="ref36" type="bt">1</bibl> <bibtext> The recipients of welfare disability benefits in Taiwan must go through official registration based on their medical diagnosis.</bibtext> </blist> <blist> <bibl id="bib2" idref="ref12" type="bt">2</bibl> <bibtext> In Taiwan, a student at an age of 15 years completes her/his compulsory education based on the Elementary and Secondary Education Act; thus, related governmental surveys discriminate between children and adults at the age of 15 years.</bibtext> </blist> <blist> <bibl id="bib3" idref="ref9" type="bt">3</bibl> <bibtext> The content of the consent form encompassed the invitation of participants in the study, the purpose of this study was to provide evidence‐based data to Hsin‐Chu City Government to improve the related policies and services, the anonymity and confidentiality confirmation of the participants including their rights to withdraw from the study.</bibtext> </blist> <blist> <bibl id="bib4" idref="ref22" type="bt">4</bibl> <bibtext> Low‐income family subsidy is available only for families assessed with 'poor' and 'near poor' status; and the amount of the subsidy is based on both family's poverty status and severity of family member with disabilities. 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Schalock</p> <p>Reported by Author; Author; Author; Author</p> </aug> <nolink nlid="nl1" bibid="bib32" firstref="ref1"></nolink> <nolink nlid="nl2" bibid="bib13" firstref="ref2"></nolink> <nolink nlid="nl3" bibid="bib20" firstref="ref3"></nolink> <nolink nlid="nl4" bibid="bib12" firstref="ref5"></nolink> <nolink nlid="nl5" bibid="bib30" firstref="ref6"></nolink> <nolink nlid="nl6" bibid="bib31" firstref="ref7"></nolink> <nolink nlid="nl7" bibid="bib33" firstref="ref8"></nolink> <nolink nlid="nl8" bibid="bib39" firstref="ref10"></nolink> <nolink nlid="nl9" bibid="bib28" firstref="ref11"></nolink> <nolink nlid="nl10" bibid="bib27" firstref="ref13"></nolink> <nolink nlid="nl11" bibid="bib41" firstref="ref14"></nolink> <nolink nlid="nl12" bibid="bib21" firstref="ref15"></nolink> <nolink nlid="nl13" bibid="bib38" firstref="ref16"></nolink> <nolink nlid="nl14" bibid="bib18" firstref="ref20"></nolink> <nolink nlid="nl15" bibid="bib22" firstref="ref23"></nolink> <nolink nlid="nl16" bibid="bib40" firstref="ref24"></nolink> <nolink nlid="nl17" bibid="bib19" firstref="ref27"></nolink> <nolink nlid="nl18" bibid="bib15" firstref="ref28"></nolink> <nolink nlid="nl19" bibid="bib34" firstref="ref32"></nolink> <nolink nlid="nl20" bibid="bib26" firstref="ref34"></nolink> <nolink nlid="nl21" bibid="bib42" firstref="ref39"></nolink> <nolink nlid="nl22" bibid="bib29" firstref="ref40"></nolink> <nolink nlid="nl23" bibid="bib36" firstref="ref41"></nolink> <nolink nlid="nl24" bibid="bib45" firstref="ref42"></nolink> <nolink nlid="nl25" bibid="bib44" firstref="ref43"></nolink> <nolink nlid="nl26" bibid="bib43" firstref="ref45"></nolink> <nolink nlid="nl27" bibid="bib10" firstref="ref52"></nolink> <nolink nlid="nl28" bibid="bib14" firstref="ref53"></nolink> <nolink nlid="nl29" bibid="bib23" firstref="ref54"></nolink> <nolink nlid="nl30" bibid="bib37" firstref="ref60"></nolink> <nolink nlid="nl31" bibid="bib35" firstref="ref62"></nolink> <nolink nlid="nl32" bibid="bib11" firstref="ref63"></nolink> <nolink nlid="nl33" bibid="bib25" firstref="ref66"></nolink> <nolink nlid="nl34" bibid="bib17" firstref="ref68"></nolink> <nolink nlid="nl35" bibid="bib16" firstref="ref69"></nolink> <nolink nlid="nl36" bibid="bib24" firstref="ref70"></nolink>
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Items – Name: Title
  Label: Title
  Group: Ti
  Data: The Quality of Life of Family Caregivers of Adults with Intellectual Disabilities in Taiwan
– Name: Language
  Label: Language
  Group: Lang
  Data: English
– Name: Author
  Label: Authors
  Group: Au
  Data: <searchLink fieldCode="AR" term="%22Chou%2C+Yueh-Ching%22">Chou, Yueh-Ching</searchLink><br /><searchLink fieldCode="AR" term="%22Lin%2C+Li-Chan%22">Lin, Li-Chan</searchLink><br /><searchLink fieldCode="AR" term="%22Chang%2C+Ai-Ling%22">Chang, Ai-Ling</searchLink><br /><searchLink fieldCode="AR" term="%22Schalock%2C+Robert+L%2E%22">Schalock, Robert L.</searchLink>
– Name: TitleSource
  Label: Source
  Group: Src
  Data: <searchLink fieldCode="SO" term="%22Journal+of+Applied+Research+in+Intellectual+Disabilities%22"><i>Journal of Applied Research in Intellectual Disabilities</i></searchLink>. May 2007 20(3):200-210.
– Name: Avail
  Label: Availability
  Group: Avail
  Data: Blackwell Publishing. 350 Main Street, Malden, MA 02148. Tel: 800-835-6770; Tel: 781-388-8599; Fax: 781-388-8232; e-mail: customerservices@blackwellpublishing.com; Web site: http://www.blackwellpublishing.com/jnl_default.asp
– Name: PeerReviewed
  Label: Peer Reviewed
  Group: SrcInfo
  Data: Y
– Name: Pages
  Label: Page Count
  Group: Src
  Data: 11
– Name: DatePubCY
  Label: Publication Date
  Group: Date
  Data: 2007
– Name: TypeDocument
  Label: Document Type
  Group: TypDoc
  Data: Journal Articles<br />Reports - Research
– Name: Subject
  Label: Descriptors
  Group: Su
  Data: <searchLink fieldCode="DE" term="%22Family+Income%22">Family Income</searchLink><br /><searchLink fieldCode="DE" term="%22Mental+Retardation%22">Mental Retardation</searchLink><br /><searchLink fieldCode="DE" term="%22Health+Conditions%22">Health Conditions</searchLink><br /><searchLink fieldCode="DE" term="%22Quality+of+Life%22">Quality of Life</searchLink><br /><searchLink fieldCode="DE" term="%22Caregivers%22">Caregivers</searchLink><br /><searchLink fieldCode="DE" term="%22Questionnaires%22">Questionnaires</searchLink><br /><searchLink fieldCode="DE" term="%22Foreign+Countries%22">Foreign Countries</searchLink><br /><searchLink fieldCode="DE" term="%22Census+Figures%22">Census Figures</searchLink><br /><searchLink fieldCode="DE" term="%22Interviews%22">Interviews</searchLink><br /><searchLink fieldCode="DE" term="%22Scores%22">Scores</searchLink><br /><searchLink fieldCode="DE" term="%22Family+%28Sociological+Unit%29%22">Family (Sociological Unit)</searchLink><br /><searchLink fieldCode="DE" term="%22Health%22">Health</searchLink><br /><searchLink fieldCode="DE" term="%22Severity+%28of+Disability%29%22">Severity (of Disability)</searchLink><br /><searchLink fieldCode="DE" term="%22Predictor+Variables%22">Predictor Variables</searchLink><br /><searchLink fieldCode="DE" term="%22Adults%22">Adults</searchLink>
– Name: Subject
  Label: Geographic Terms
  Group: Su
  Data: <searchLink fieldCode="DE" term="%22Taiwan%22">Taiwan</searchLink>
– Name: DOI
  Label: DOI
  Group: ID
  Data: 10.1111/j.1468-3148.2006.00318.x
– Name: ISSN
  Label: ISSN
  Group: ISSN
  Data: 1360-2322
– Name: Abstract
  Label: Abstract
  Group: Ab
  Data: Background: Taiwanese family carers of people with intellectual disabilities not only suffer from long-term stress but also need to cope with social difficulties. The aim of this study is to evaluate the quality of life (QOL) among family carers of people with intellectual disabilities. Materials and methods: A census interview survey was conducted in Hsin-Chu City in Taiwan and included the primary family caregivers of 792 adults with intellectual disability who were living with their families. The survey packet contained the WHOQOL-BREF Taiwan-version scale with four core domains and the activities of daily life/instrumental activities of daily life (ADL/IADL) scales. Results: The mean score for "physical" was highest and that for "environment" was lowest. The strongest predictors of caregivers QOL were the caregiver's health status, their family income and the level of severity of the intellectual disability of the adult. Conclusions: The results of the study support the need to expand services and individualize support to families of adults with intellectual disability living in family homes.
– Name: AbstractInfo
  Label: Abstractor
  Group: Ab
  Data: As Provided
– Name: DateEntry
  Label: Entry Date
  Group: Date
  Data: 2009
– Name: AN
  Label: Accession Number
  Group: ID
  Data: EJ835586
PLink https://search.ebscohost.com/login.aspx?direct=true&site=eds-live&db=eric&AN=EJ835586
RecordInfo BibRecord:
  BibEntity:
    Identifiers:
      – Type: doi
        Value: 10.1111/j.1468-3148.2006.00318.x
    Languages:
      – Text: English
    PhysicalDescription:
      Pagination:
        PageCount: 11
        StartPage: 200
    Subjects:
      – SubjectFull: Family Income
        Type: general
      – SubjectFull: Mental Retardation
        Type: general
      – SubjectFull: Health Conditions
        Type: general
      – SubjectFull: Quality of Life
        Type: general
      – SubjectFull: Caregivers
        Type: general
      – SubjectFull: Questionnaires
        Type: general
      – SubjectFull: Foreign Countries
        Type: general
      – SubjectFull: Census Figures
        Type: general
      – SubjectFull: Interviews
        Type: general
      – SubjectFull: Scores
        Type: general
      – SubjectFull: Family (Sociological Unit)
        Type: general
      – SubjectFull: Health
        Type: general
      – SubjectFull: Severity (of Disability)
        Type: general
      – SubjectFull: Predictor Variables
        Type: general
      – SubjectFull: Adults
        Type: general
      – SubjectFull: Taiwan
        Type: general
    Titles:
      – TitleFull: The Quality of Life of Family Caregivers of Adults with Intellectual Disabilities in Taiwan
        Type: main
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            NameFull: Chou, Yueh-Ching
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            NameFull: Lin, Li-Chan
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            NameFull: Chang, Ai-Ling
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            NameFull: Schalock, Robert L.
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            – D: 01
              M: 05
              Type: published
              Y: 2007
          Identifiers:
            – Type: issn-print
              Value: 1360-2322
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              Value: 20
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              Value: 3
          Titles:
            – TitleFull: Journal of Applied Research in Intellectual Disabilities
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