An initial look at the quality of life of Malaysian families that include children with disabilities
Abstract
Background While there is a growing body of literature in the quality of life of families that include children with disabilities, the majority of research has been conducted in western countries. The present study provides an initial exploration of the quality of life of Malaysian families that include children with developmental/intellectual disabilities. Dynamics characterising Malaysian society are described as developments in social policy and service delivery that support persons with disabilities and their families.
Method Questionnaire data were collected using the Family Quality of Life Survey – Short Version. Members of 52 families that included one or two children with disabilities were interviewed. Their responses provided their perceptions within six dimensions of family quality of life across the nine life domains assessed.
Results Findings showed a consistent pattern of relatively strong perceived ‘importance’ ratings in each of life domains as compared to mean ratings for other family quality of life dimensions. Some dimensions of family quality of life, in particular ‘opportunities’, ‘initiative’ and ‘attainment’, demonstrated particularly strong associations with each other. Overall means of satisfaction with and attainment of family quality of life as well as global evaluations of quality of life and satisfaction all demonstrated significant associations, although each of these correlations accounted for less than 50% of the common variance.
Conclusions The importance rating can be viewed as a determining factor in terms of quality of life, and it played a critical role in supporting attainment of, and satisfaction with, family quality of life, assuming opportunities, initiative and stability are adequate. The need for a broader sample including families that were not receiving services was noted. Future research questions based on the results of the current study and some of the dynamics impacting Malaysian society are also suggested.
Introduction
This article describes an initial exploration of the quality of life of families that include children with disabilities in Malaysia. As a thorough review of the relevant literature has been included in the article by Samuel and Brown in the current issue, the reader is referred to it for background information. Samuel and Brown give a full description of the Family Quality of Life Survey (I. Brown et al. 2006) used in the present study as well as the tool developed by the Beach Center (Beach Center on Disability 2003). In addition, the development of a quality of life approach to families where there is a child with intellectual and often multiple disabilities is provided in Turnbull et al. (2004). Since that time, considerable research has been carried out in several countries using the Family Quality of Life Survey, including the study described here.
The majority of studies of family quality of life (FQoL) where there is a family member with a disability have been carried out in western countries. A few studies in other regions, including Latin America (Aznar & Castanon 2005), Asia (Chou et al. 2007; Mak & Ho 2006) and the Middle East (Azar & Badr 2006), have been reported. In addition, Brown et al. (2010) have provided a cross-country analysis of data from Asian countries as well as Canada and Australia. While there is limited research in non-western areas, Mannan & Turnbull (2007) have suggested that the evaluations of community-based rehabilitation (CBR) programmes in the 43 developing countries, where the World Health Organization has promoted the CBR model, should include the measurement of the quality of life of programme participants and measurement of the quality of life of their families.
World Health Organization has developed the CBR model for enhancing the quality of life of persons with disabilities (Helander 1993; Lysack & Kaufert 1994). While this approach is used in countries in all regions of the world, it is most responsive to the needs and circumstances in developing countries. It can be implemented in communities where services for persons with a disability are extremely limited or entirely absent and promote the coordinated use of resources at a realistic and sustainable level. CBR rejects the institutional care model and supports the maintenance of persons with disabilities within their homes and communities. It is the rehabilitation model currently used in Malaysia. The CBR model has supported families in Malaysia through the direct provision of supports and therapeutic services to family members who have disabilities. CBR has also supported families to learn and maintain the procedures and interventions developed by rehabilitation workers to ensure better outcomes for family members with disabilities. Often, transportation difficulties and limited staffing resources reduce the frequency and time available for these supports to ensure a desirable level of progress. Providing family members with an understanding of the procedures designed to support their family member with a disability allows them to take an active, useful role in the rehabilitative process.
Mannan & Turnbull (2007) described two frameworks for establishing FQoL as a CBR outcome measure, the Family Quality of Life Survey (I. Brown et al. 2006) and the Beach Center Family Quality of Life Scale (Park et al. 2003). They suggest that the continuing use of these and other FQoL measures will assist development of policies and supports that will enhance quality of life of persons with disabilities and their families. The Family of Quality of Life Survey (I. Brown et al. 2006) was selected for the current study. The Short Version of this survey was selected in order to minimise the amount of time that would need to be requested of participating family members who often are busy and stressed because of caregiving demands. This version also reduced the amount of time and funds that would be required for translation.
The research described in this article was conducted in Ipoh, in the state of Perak, Malaysia. Ipoh is the capital of the state of Perak and is the third largest city in Malaysia with a population of more than 700 000. (Central Intelligence Agency 2009).
Within the past decade, Malaysia has emerged from developing country status and is now considered a middle-income country. This standing is evidenced by improvements in indicators such as the life expectancy at birth, currently estimated at 73.29 years, and the infant mortality rate, now about 15.87 per 1000 (Central Intelligence Agency 2009). It has transformed from an economy based on the production of raw materials into a diversified economy that includes clothing, high technology industries, medical technology and pharmaceuticals (Central Intelligence Agency 2009). Malaysia is a vibrant country with a relatively young population [median age is 24.9 years with 31.4% of the population under 15 years of age (Asia–Pacific Development Center on Disability 2009)].
Malaysia has an ethnically diverse population. Just over 50% (50.4%) of the population of 27 million are Malay. The other ethnic groups include Chinese (23.7%), indigenous population (11%), Indian (7.1%), other groups (7.8%; Central Intelligence Agency 2009). This diversity is reflected in the range of religious groups with recent estimates indicating the Muslims make up 60.4% of the population, while Buddhists are 19.2%, Christians 9.1%, Hindus 6.3%, and adherents of Confucianism, Taoism, other traditional Chinese religions are 2.6%, with a further 2.3% being of unknown or no religion. (Central Intelligence Agency 2009).
While there are certainly efforts to promote racial harmony in Malaysia, there are laws and policies that clearly advantage the Malay majority. A lower entrance requirement for university admission (Altbach & Knight 2007) and reserving some jobs for Malays only are examples of practices that undermine the relationships between the ethnic groups within this country. The resulting tensions have largely remained under the surface but are an irritation and a focus of attention among minority groups.
Overall income is on the increase in this transition economy. There is, also, an increase in the disparity between rich and poor and a resulting need for effective, efficient exercise of social assistance and supports (Milanovic 1995). In response, the Malaysian government has initiated some social policies initiatives aimed at support of persons with disabilities and their families. Following the International Year of the Disabled Persons in 1980 and the World Program of Action Concerning Disabled Persons in 1982, the government undertook the development of the policy titled ‘Welfare a Shared Responsibility’ (Asia–Pacific Development Center on Disability 2009).
Malaysia formulated its National Welfare Policy in 1990, which allowed a small support payment to persons with disabilities (Mansoor & Awang 2002). This policy supports Malaysia's Vision 2020, aimed at attaining the status of a fully developed nation with an emphasis on enhancing the well-being and social stability of the people and the establishment of a fully caring society. As a step in this process, Malaysia signed the Proclamation on Full Participation and Equality of People with Disabilities in the Asia and Pacific Region on 16 May 1994. (Habib et al. 2002).
There is fragmented legislation supporting the rights of the disabled citizens including Article 8 of the Federal Constitution indicating that all persons are equal before the law and entitled to its equal protection, although persons with disabilities were not specifically mentioned until they were added relatively recently (Asia–Pacific Development Center on Disability 2009). The Disabled Persons Act was drafted in 2002. It was designed to reinforce the equality of persons with disabilities before the law. It specifically prohibits discrimination against a person simply on the grounds of disability in the areas of employment, education, housing, transportation, business activities, sports, recreational activities, access to public places, access to public facilities and services. This act was passed on December 2007.
Although there have been efforts to enhance the status and support of persons with disabilities in Malaysia and their families, these measures have had limited impact on their daily lives. The focus on economic development and the underlying ethnic tensions have, to some degree, interfered with the motivation and energy available to promote disability issues. Some groups have formed to advocate for development of services for specific disabilities, but there is no evidence of the establishment of parent associations that allow for mutual support and joint action in advocating for their needs and the needs of their children (Asia–Pacific Development Center on Disability 2009).
While a registration system for persons with disabilities operated by the Ministry of Health is in place, it is argued that the practicalities associated with completing the registration process substantially reduce the numbers that should be seen on this register (Amar-Singh et al. 1999; Amar 2008), and international standards developed by World Health Organization, regarding the expected incidence of disability within a population, suggest that the number of persons registered accounts for a small percentage of disabled children in Malaysia (Amar 2008).
The purpose of this study using the Family Quality of Life Survey is to establish an initial appreciation of the quality of life of families that include children with disabilities within the context described above. The results relate to social policy development and applied actions aimed at improving the quality of life of these Malaysian families.
Method
Sample
Fifty-three (53) families were randomly selected from among the families that had children (i.e. family members who were 18 or younger) receiving services from Yayasan Sultan Idris Shah (YSIS). All 53 families agreed to participate, although one family provided too few responses to be included in the sample. Whether the lack of responses provided by this family was due to time constraints or an unwillingness to answer many of the questions was not noted by the interviewer.
All of the children with developmental/intellectual disabilities (DD/ID) in the sample families were receiving services from YSIS. This foundation has been providing services to persons with disabilities throughout the state of Perak based on the CBR model. Participants were recruited from the two programmes operated by YSIS: ‘Pusat Pemulihan Sultan Azlan Shah’ (Main Center) or the Ipoh city CBR Centre (‘Stepping Stone’). Both of these centres provide rehabilitation programmes for children and adults with a wide range of disabling conditions within one or more of the programme units (i.e. Physiotherapy, Occupational Therapy and Speech Therapy). Children registered in YSIS programmes were usually receiving additional services elsewhere such as special classes in schools or other CBR centres that provide day programmes.
The participating families were selected from the two services in accordance with the relative proportion of total clients served by the two services. The Main Center serves, roughly, about twice the number of clients supported by Stepping Stone. As a result, 36 families from the Main Center and 17 families were recruited from Stepping Stone.
Data describing the children with DD/ID in the sample families are summarised in Table 1. Fifty of the families included one child with a disability, while two of the families included two children with disabilities. Forty-nine of the 54 children were living in their homes. There was no response regarding the living situation for the remaining five children. Their primary diagnoses were varied and included: ID (cause unknown), Down syndrome, cerebral palsy, autism spectrum disorder, as well as several others.
| Variable | Number in sample (note: not all respondents completed each question) | Mean | SD | Range |
|---|---|---|---|---|
| Number of families in sample | 52 | |||
| Number of children with DD/ID | 54 | |||
| Gender of child | Boys – 38 | |||
| Girls – 16 | ||||
| Age of child (years) | 7.54 | 3.99 | 2–18 | |
| Living at home | Yes – 49 | |||
| No – 0 | ||||
| Level of communication* | 1 – 5 | 2.80 | 0.98 | 1–5 |
| 2 – 12 | ||||
| 3 – 22 | ||||
| 4 – 8 | ||||
| 5 – 2 | ||||
| Total – 49 | ||||
| Level of support needed† | 1 – 14 | 2.67 | 1.34 | 1–5 |
| 2 – 11 | ||||
| 3 – 9 | ||||
| 4 – 14 | ||||
| 5 – 4 | ||||
| Total – 52 | ||||
| Primary diagnosis | ID (cause unknown) – 12 | |||
| Autism spectrum – 4 | ||||
| Down syndrome – 7 | ||||
| Cerebral palsy – 16 | ||||
| Other – 12 | ||||
| Total – 51 |
- * Levels of communication: 1: very little meaningful communication; 2: communicate basic needs and wants; 3: communicate needs, wants and some ideas in a meaningful way; 4: communicate within a limited range of topics in a meaningful way; 5: communicate about a wide variety of topics in a meaningful way.
- † Levels of support: 1: requires support for almost all aspects of life; 2: requires support for most, but not all, aspects of life; 3: requires support for some aspects of life; 4: requires support for only a few aspects of life; 5: does note require disability-related support.
The data describing the 52 families in the sample are summarised in Table 2. Of the 45 family members that indicated their relationship to the person with a disability, 43 were the individuals' mothers, while one was a father and one (other) was a cousin. The average age of respondents indicating their age was 39.2 years. Twelve of the respondents indicated they were part of single-parent families, while 33 were in two-parent families. Only one respondent indicated that they were the only adult in the household because of extended family or adult children living in the majority of single-parent situations. The level of responsibility that the respondent felt they had for their family was ‘more’ or ‘much more than they would like’ by 37 of the 50 participants responding to this item, while only 26 of 51 respondents indicated the they felt a level of responsibility that was ‘more than they would like’ or ‘much more than they would like’ for the family member with a developmental disability.
| Variable | Description of results (note: not all respondents completed each question) |
|---|---|
| Number of families in sample | 52 |
| Relationship of respondent to person(s) with DD/ID | Mother – 43 |
| Father – 1 | |
| Other – 1 | |
| Age of respondent (years) | Mean – 39.2 |
| SD – 8.5 | |
| Range – 24–65 | |
| Family structure | One parent – 12 |
| Two parents – 33 | |
| Other – 3 | |
| Adults in home | One adult – 1 |
| Two adults – 25 | |
| Three adults – 11 | |
| Four adults – 3 | |
| Siblings in home | One sibling – 4 |
| Two siblings – 8 | |
| Three siblings – 2 | |
| Four siblings – 3 | |
| Other relatives in home | One relative – 9 |
| Two relatives – 8 | |
| Three relatives – 2 | |
| Level of responsibility for family* | Level 1 – 18 |
| Level 2 – 19 | |
| Level 3 – 11 | |
| Level 4 – 2 | |
| Level 5 – 0 | |
| Level of responsibility for person(s) with DD/ID* | Level 1 – 13 |
| Level 2 – 13 | |
| Level 3 – 20 | |
| Level 4 – 4 | |
| Level 5 – 1 |
- * Levels of responsibility: 1: much more responsibility than I would like; 2: more responsibility than I would like; 3: about the amount of responsibility I like; 4: less responsibility than I would like; 5: much less responsibility than I would like.
- DD/ID: developmental/intellectual disabilities.
Survey instrument
The Family Quality of Life Survey – Short Version (I. Brown et al. 2006) was used to interview participants included in the Malaysian sample. The Short Version does not provide the opportunity for expansion of responses, which is included in the standard version of the Family Quality of Life Survey. As the Family Quality of Life Survey (I. Brown et al. 2006) is described fully by Samuel and Brown in this issue, the reader is referred to their article for a description of this device.
The survey instrument was translated into Bahasa Malaysia, the official language of Malaysia, for the purposes of this survey. The translation was completed by Kamarul Zaini Bin Abdul Ghani, who is fluent in both English and Bahasa Malaysia. The back translation was done by Katrina Binti Abdullah, a staff member at YSIS, who is fluent in English, Bahasa Malaysia as well as Mandarin. The back translation uncovered three minor discrepancies which were corrected to produce the version used in the study.
Participants were given the option of having the survey interview in English or Bahasa Malaysia. English is used as the primary language in some Malaysian families and several respondents chose to use the original English version. The interview was highly structured, as it followed the Family Quality of Life Survey – Short Version.
Procedure
Ethics procedure
Families were given a letter (in English or Bahasa Malaysia, according to their preference) describing the purpose of the research and procedure to be used, including the expected amount of time an interview, to complete the survey form, would take (less than 1 h). The letter also informed the family member that the information they provided would be held in confidence and that they could choose to not answer any questions they did not wish to answer and that they could discontinue the interview at any time. The letter requested their involvement in the study and gave them the option of having the interview at their home or at the facility (either the Main Center or Stepping Stone), while their child was receiving their speech therapy, occupational therapy or physiotherapy programme.
A family member could indicate whether or not they were willing to participate at any time after receiving the letter. If a family member indicated that the family was willing to participate, the family member that was to act as a respondent was given a consent/disclosure form to complete, again in either English or Bahasa Malaysia according to their preference. An appointment time and interview location were established according to the wishes of the family member.
At the interview, the consent form was explained and signed, if the family member continued to be willing to participate. In the consent form, it was noted that neither the family nor the child(ren) would be identified and that any information they provided would be used in aggregate form. It also indicated that the respondent could refuse to answer any questions they wished and discontinue the interview at any point.
Interviewers
Seven interviewers were selected from the staff members at the YSIS programme sites. Several of the staff members were fluent in English as well as Bahasa Malaysia. The interview process was reviewed with the interviewers, and questions they had were discussed. The interviewers were required to sign a confidentiality agreement which included statements indicating they understood they were to keep the information confidential.
Results
This section describes the participants' ratings on the FQoL measures for the six dimensions in each of the nine life domains covered by the survey. A series of tables summarise the data collected.
What are the associations among Attainment, Satisfaction, Importance, Opportunities, Initiative and Stability within domains?
In order to examine the relationships among the dimensions within each of the domains, a series of six correlation matrices (nine domains × nine domains for the ‘attainment’, ‘satisfaction’, ‘importance’, ‘opportunities’, ‘initiative’ and ‘stability’ ratings) were calculated. Table 3 summarises the statistically significant (P < 0.05) correlations that emerged from these calculations.
An examination of Table 3 indicates some differences in the number of significant correlations between various pairs of domains. For example, the ‘stability’ dimension contains the greatest number of relationships between domains other than those significantly correlated to the ‘health’ domain. Other dimensions demonstrate much more variability. For example, there are no associations or only one in the ‘satisfaction’ dimension for the ‘health’, ‘financial’ and ‘values’ domains, while there are four or five interrelationships with the ‘family’, ‘careers’, ‘leisure’ and ‘community’ domains associated with this same dimension.
What are the differences between the dimensions in each of the domains?
Table 4 provides the mean scores and standard deviations for the six dimensions in each of the nine domains. The ‘family’ domain had, numerically, the highest mean score in each of the dimensions with the exception of the ‘attainment’ dimension. On this dimension, the mean rating for the ‘family’ domain is lower than those for the ‘values’ and ‘health’ domains. The ‘support from others’ dimension, on the other hand, had the lowest numerical mean score on each of the six dimensions with the exception of ‘satisfaction’. On that dimension, the ‘support from others’ follows ‘financial’ as the lowest domain.
| Dimensions/domains | Importance | Opportunities | Initiative | Attainment | Stability | Satisfaction |
|---|---|---|---|---|---|---|
| Mean (SD) | Mean (SD) | Mean (SD) | Mean (SD) | Mean (SD) | Mean (SD) | |
| Health | 4.62 (0.57) | 3.19 (1.01) | 3.94 (0.83) | 4.04 (0.91) | 3.98 (0.83) | 3.98 (0.64) |
| Financial | 4.62 (0.53) | 3.02 (0.87) | 3.61 (0.94) | 3.69 (0.83) | 3.67 (0.71) | 3.53 (0.90) |
| Family | 4.67 (0.51) | 3.92 (0.97) | 4.15 (0.94) | 4.00 (0.98) | 4.00 (0.74) | 4.23 (0.65) |
| Support from others | 3.51 (1.15) | 2.73 (1.08) | 2.75 (1.15) | 2.63 (1.13) | 3.47 (0.70) | 3.73 (0.70) |
| Service supports | 4.35 (0.87) | 3.25 (1.06) | 3.49 (1.03) | 3.39 (0.92) | 3.65 (0.77) | 4.10 (0.67) |
| Values | 4.53 (0.61) | 3.80 (0.94) | 4.06 (0.93) | 4.06 (0.95) | 3.94 (0.76) | 4.14 (0.58) |
| Careers | 4.22 (0.88) | 3.59 (1.13) | 3.96 (1.04) | 3.58 (1.16) | 3.70 (0.76) | 3.86 (0.85) |
| Leisure | 4.24 (0.79) | 3.39 (1.19) | 3.53 (1.10) | 3.38 (1.02) | 3.73 (0.84) | 3.76 (0.80) |
| Community | 4.24 (0.74) | 3.71 (1.06) | 3.90 (1.08) | 3.71 (0.99) | 3.84 (0.68) | 4.00 (0.64) |
The mean ratings on the dimensions for each domain suggest there were some substantial differences between them. Paired t-tests were calculated between all of the possible pairs of dimensions within each of the domains using two-tailed tests of significance. The results are summarised in Table 5.
While the calculation of such a large number of t-tests does increase the possibility of committing Type I statistical errors, the examination of these associations was considered of substantial interest because of the wide range of variables and the exploratory nature of this research. In considering the results in Table 5, it should be noted that those t-values that lie at a probability level of 0.01 minimise the chances or error. While there is a greater probability that a Type I error among t-values with a probability of 0.05 and above (but below an alpha level of 0.01), these results have also been reported as these differences may be of relevance in the analysis of future research.
A number of patterns are apparent from an examination of these data. For example, mean ‘importance’ scores for each domain were significantly higher than the means for all of the other dimensions in each domain with only four exceptions out of the 45 paired t-values calculated. The patterns are described in the Discussion section.
What are the overall associations among Attainment, Satisfaction, Opportunities, Initiative and Stability?
In order to evaluate the strength of the associations among the ‘importance’, ‘attainment’, ‘satisfaction’, ‘opportunities’, ‘initiative’ and ‘stability’ dimensions, a 6 × 6 correlation matrix for overall scores (i.e. mean of the nine domain scores for each of these dimensions) was calculated. The results are displayed in Table 6. Of the interrelationships that were significant, some were more robust than others. For example, ‘attainment’ shared 36% of the variance in common with ‘satisfaction’, 64% in common with ‘opportunities’, and about 80% in common with ‘initiative’. Another strong correlation occurred between ‘opportunities’ and ‘initiative’. The ‘stability’ dimension, on the other hand, showed relatively weaker correlations, particularly with the ‘opportunities’ and ‘initiative’ dimensions. The ‘importance’ dimension was not significantly correlated with either ‘stability’ or ‘satisfaction’.
| Mean importance | Mean attainment | Mean satisfaction | Mean opportunities | Mean initiative | Mean stability | |
|---|---|---|---|---|---|---|
| Mean importance | 1.00 | |||||
| Mean attainment | 0.44** | 1.00 | ||||
| Mean satisfaction | 0.26 | 0.61** | 1.00 | |||
| Mean opportunities | 0.43** | 0.81** | 0.37** | 1.00 | ||
| Mean initiative | 0.49** | 0.88** | 0.53** | 0.79** | 1.00 | |
| Mean stability | −0.06 | 0.42** | 0.47** | 0.29* | 0.33* | 1.00 |
- ** Correlation is significant at the 0.01 level (two-tailed).
- * Correlation is significant at the 0.05 level (two-tailed).
Is Satisfaction within domains the same as a global satisfaction measure?
To evaluate whether the overall ‘satisfaction’ score (the mean of the ‘satisfaction’ scores across all the nine domains) was essentially the same as the global ‘satisfaction’ question asked at the conclusion of the survey, a correlation was computed between these two values. The result was a coefficient of 0.68, which was significant at the P < 0.01 level. While the correlation was relatively strong, it does demonstrate that under half of the variance within the responses to the final ‘satisfaction’ questions is accounted for by the mean ‘satisfaction’ scores for the nine domains.
Are Attainment and Satisfaction within domains the same as a global quality of life measures?
To determine whether either of the mean scores derived from the ratings of ‘attainment’ and ‘satisfaction’ items in the nine domains was equivalent to the ‘global quality of life’ rating and/or the ‘global satisfaction with quality of life’ rating at the end of the survey, a 4 × 4 correlation matrix was computed (see Table 7). All of the resulting coefficients were significant at the P < 0.01 level. The strength of the correlations indicates that below 50% of the variance in the respondents' rating of their ‘global quality of life’ and their ‘global satisfaction with quality of life’ is accounted for by the means of either the mean ‘attainment’ or the mean ‘satisfaction’ ratings computed from theses scores in each of the nine domains. The relative strength of the correlation between ‘global satisfaction with quality of life’ and mean (overall) ‘satisfaction’ score should be noted, as it suggests a strong relationship between these two survey questions.
| Mean (overall) attainment | Mean (overall) satisfaction | Global quality of life score | Global satisfaction with quality of life score | |
|---|---|---|---|---|
| Mean (overall) attainment | 1.00 | |||
| Mean (overall) satisfaction | 0.61** | 1.00 | ||
| Global quality of life score | 0.39** | 0.51** | 1.00 | |
| Global satisfaction with quality of life score | 0.45** | 0.68** | 0.57** | 1.00 |
- ** Correlation is significant at the 0.01 level (two-tailed).
Discussion
This study involved 54 children (see Table 1) and their families (see Table 2). The children range in age from 2 to 18 with a mean age of about 7.5. All lived in their family home and demonstrated a range of communication skills and support needs.
The families were mostly two-parent families, some of which included siblings and/or extended family. Most respondents indicated their family required more responsibility than they liked, and a slight majority indicated that the child(ren) with DD/ID required more responsibility than they would like. These results suggest most respondents, mostly the mothers of the children with DD/ID, were experiencing a degree of stress.
Table 3 describes the significant associations between the domains within each of the dimensions. An examination of significant correlations associated with the ‘importance’ dimension indicates that there was a cluster of domains that demonstrated relatively high correlations across several domains. ‘Health’, ‘financial’, ‘family’, ‘values’ and ‘careers’ all appeared to have several interrelationships within the ‘importance’ dimension. Within the ‘opportunities’ dimension, a different set of interrelationships emerged, including ‘service supports’, ‘community’, ‘careers’, ‘health’ and ‘leisure’. The domains that demonstrated several strong interrelationships in the ‘initiative’ dimension were ‘family’, ‘health’, ‘financial’, ‘leisure’ and ‘careers’. Within the ‘attainment’ dimension, intercorrelations were calculated for the ‘financial’, ‘health’, ‘leisure’, ‘values’ and ‘careers’ domains. The interrelationships associated with the ‘stability’ dimension included all of the domains, and those associated with the ‘satisfaction’ dimension were ‘careers’, ‘leisure’, ‘family’, ‘support from others’ and ‘community’.
The means and standard deviations resulting from the ratings provided on the six dimensions of the FQoL for each of the nine domains (Table 4) indicate that while the domains were seen as important, opportunities within many domains appeared to be relatively limited. Support for this observation is provided by an examination of Table 5, which notes that, in 41 of the 45 comparisons, mean ‘importance’ was rated as significantly higher than the means of the other five dimensions in each of the nine domains. ‘Satisfaction’ ratings were also relatively high within most domains. ‘Opportunities’, ‘initiative’, ‘attainment’ and/or ‘stability’ ratings were significantly lower as compared to the level of ‘satisfaction’ in 19 of 36 comparisons between ‘satisfaction’, and ‘opportunities’, ‘initiative’, ‘attainment’ and ‘stability’ for each of the nine domains.
These results are somewhat surprising, as it would seem that ‘satisfaction’ should be, to some extent, dependent on ‘opportunities’, ‘initiative’, ‘attainment’ and ‘stability’. It appears that life domains, from maintaining the health of the family and financial well-being to participation in leisure and recreation, and community interaction, are seen as important. The Malaysian sample appeared to perceive a general lack of opportunities within all of the life domains included in the survey. The level of initiative to pursue improved FQoL was viewed as limited relative to the importance of the various life domains, as were the level of attainment in FQoL and the sense of a stable and reliable level of FQoL, in each domain.
The general lack of association between ‘importance’ and ‘satisfaction’ across the domains is shown in Table 6. The correlation between the mean overall domain scores for these variables does not reach significance. There are significant correlations reported in Table 6 between mean ‘satisfaction’ and each of the other overall mean dimension ratings (i.e. ‘opportunities’, ‘initiative’, ‘attainment’ and ‘stability’), but these coefficients are not as strong as the intercorrelations among these four domains.
While the clear majority of mean ratings between ‘importance’ and the other five dimensions in each of the life domains for the Malaysian sample are significantly different, there are a number of strong associations between the various domains. Table 6 notes there are significant correlations between the overall ratings for ‘importance’ and the overall ratings for the ‘opportunities’, ‘initiative’ and ‘attainment’ dimensions of FQoL. ‘Importance’ can be viewed as a determining factor in terms of quality of life and plays a critical role in supporting ‘attainment’ of and ‘satisfaction’ with FQoL, assuming ‘opportunities’, ‘initiative’ and ‘stability’ are adequate. It should, however, be recognised that the relative ‘importance’ of life domains may differ from family to family and therefore it seems critical to understand what is important for each family as service providers attempt to implement and improve supports. Another way of saying this is that family choices are critical. The importance of supporting choices within the individual and family is stressed by Brown & Brown (2009).
An interesting pattern of associations is evident in Table 6. There are very high significant intercorrelations (0.79, 0.81 and 0.88) among the ‘opportunities’, ‘initiative’ and ‘attainment’ dimensions. One interpretation is that in general, ‘attainment’ of FQoL is dependent on the ‘opportunities’ available and the level of ‘initiative’ exercised in pursuing the ‘available’ opportunities across the various life domains. The associations between ‘attainment’ and both the level of ‘stability’ the family perceives and the ‘importance’ they place on the domains are not as strong (0.42 and 0.43) but are still significant and contribute to attainment of FQoL. An alternative view of these associations is that a life domain must first be viewed as important, which in turn motivates efforts towards ‘attainment’, followed by the development of a degree of stability. Table 7 notes that there is a relatively strong significant association between the mean ‘attainment’ ratings for all of the domains and the overall mean ‘satisfaction’, as well as the significant correlations for the global ratings of quality of life and satisfaction with quality of life. This can be expected, as attainment of a need should be the requirement theoretically for both satisfaction and global quality of life.
As noted in the Results section, a correlation coefficient was calculated between the mean of the ‘satisfaction’ scores across all the nine domains and the global ‘satisfaction’ question. While it might be expected that an individual's level of satisfaction averaged across the various life domains would be equivalent to their global evaluation of their FQoL, in this sample theses two variables shared less than 50% of the variance. It appears that there are additional factors reflected in people's perceptions. For example, an individual might give differing weights to conditions and events in various life domains. A situation in one aspect of their life may result in a general sense of happiness or unhappiness that impacts ratings in other domains. There is, however, a significant association between the mean of the satisfaction ratings and the global satisfaction rating.
A comparison of the results of this survey to results from other countries indicates some substantial and unexpected differences. Brown et al. (2010) using Family Quality of Life Survey provide the percentage of respondents reporting that they are satisfied or very satisfied with FQoL for each of the nine domains included in the survey. These results are provided for each of four countries/regions: Australia, Canada, South Korea and Taiwan. The results from Canada and Australia are relatively similar with consistent patterns of highs and lows across the nine domains. The domains in which higher percentages of respondents (about 60% up to near 80%) indicated they were ‘satisfied’ or ‘very satisfied’ were Health, Relationships and Values, and they were the same in both of these countries. The percentages for the remaining domains were below the 60% level for both countries.
The percentage of the Malaysian families participating in this study indicating they were ‘satisfied’ or ‘very satisfied’ in each of the nine domains was much higher. All were above 60%, and Health, Family Relationships and Values were all above 90% as was the Service Supports domain. The lowest percentage of respondents indicating they were ‘satisfied’ or ‘very satisfied’ was on the Careers domain (68.6%), while the next two lowest domains were Financial (72.5%) and Leisure (74%), all well above the ratings for these domains in Canada and Australia.
When these Malaysian results are compared to the Taiwan and South Korea results reported by Brown et al. (2010), the differences are even more striking. Respondents from these two countries indicated they were satisfied or very satisfied less than 50% of the time on all of the nine domains with the single exception of Family Relations where over 60% of Koreans indicated they were satisfied or very satisfied.
While the Brown et al.'s (2010) analysis reported only on the Satisfaction results found in studies conducted in four countries/regions, the results from one of the Canadian studies used in this analysis also provided the means and standard deviations for the dimensions of Attainment, Opportunities and Initiative (Brown et al. 2003). These results allow a further comparison with the results from the Malaysian survey reported here. While the Satisfaction and the Initiative score means for all of the nine domains were higher in the Malaysian sample than reported for the Canadian sample, there were less consistent differences across the other three domains. The Attainment means were slightly higher in the Support from Others and the Careers domains in the Canadian sample. For the Opportunities dimension, the Canadian means from the Brown et al. (2003) study were slightly higher than the Malaysian means in regard to Financial well-being, Leisure and Community involvement. The majority of means for the respondents' ratings across these four dimensions are, however, somewhat higher for the Malaysian sample than for the Canadian sample.
It should also be noted the results for the Canadian, Australian, South Korean and Taiwanese studies are based on results from an early edition of the Family Quality of Life Survey form. However, the differences are of an order that could not be explained by the changes between the current and previous survey forms.
There are various possible explanations for the differences between the Malaysian results and those from the other countries noted here. The higher ratings seen in the Malaysian sample may be due to cultural differences that generate a tendency to respond more favourably to the types of questions included in this survey. The improving economic conditions and associated changes in the quality of life in Malaysia may have produced more positive judgements about their situation relative to their recent past.
One possible explanation may be related to the level of assistance available to the main caregiver in the Malaysian sample relative to the samples from the other four countries/regions. Eighteen of the 52 families in the current study reported that they had live-in paid caregivers or extended family members that provided care and support for their family member with a disability, reducing the responsibility left to the primary caregiver. Within the Korean sample, on the other hand, the mother was the full-time support for the family member with a disability as well as serving the rest of the family (Dr K Hong, personal communication, 27 September 2010).
Finally, information from Table 6 may be useful in the development of recommendations for improving FQoL of Malaysian families that include a person with disabilities. For example, within the ‘opportunities’ dimension, the ‘support from others’ and ‘financial’ domains show significant correlations suggesting that changes in one of these areas may impact the other domains because of these significant associations.
Study limitations and future research
A limitation of the current study relates to the sample selection. Amar-Singh (1997, 2002) suggested that less than 20% of Malaysian parents use disability services regularly and only 10% of parents are actively engaged in their child's rehabilitative process, noting burn out and an associated sense of hopelessness. Also, these figures are suggestive of difficulties with the implementation of the CBR model which is reliant on parent involvement as a primary mechanism for supporting the rehabilitative process. This point is reinforced by Amar (2008), noting that parents must be aware that they are critical to their child's development both as advocates for their child and as ‘co-therapists’ within the home. The sample in this study was drawn from a group of parents who were utilising available services and who were usually included in treatment activities by the therapists working with their children. The responses to Family Quality of Life Survey items by parents who are not using available supports and actively involved in their child's rehabilitation can be expected to be very different from those that are. The results of this study should be considered with this caveat in mind.
The difficulty for parents is magnified by fragmented services that do not appear to be a priority in many jurisdictions in Malaysia (Amar 2008). Amar (2008) also notes that this situation, together with a lack of emotional support for parents, results in the low service utilisation rates described above. These observations point to a need to establish resources that ensure improved outcomes for their children and provide a better quality of life for these families. The results of the current research are interesting in this regard. The importance of ‘support from others’ in the Malaysian sample is much lower than the importance placed on all of the other domains. At the same time, ‘service supports’ is seen as quite important relative to other domains. For the group of parents included in this research who are utilising services, there is a focus on the support they are receiving from programmes provided by YSIS and other agencies. Those parents not accessing these services might see ‘support from others’ as very important, if they have not found services that they perceive as supportive or helpful. Again, this observation underlines the value of a recruiting a broader sample that includes an appropriate proportion of parents who are not receiving services.
Another limitation of the current study is due to the use of the Family Quality of Life Survey – Short Version (I. Brown et al. 2006) rather than the full version of this survey. The information that would have been collected using the longer form may have helped to provide a better understanding of the reasons for the higher level of satisfaction across all of the domains relative to the results described by Brown et al. (2010) from the four countries/regions noted above. It would have also been of assistance to have interviewers note any items that had to be clarified or wording that was unclear to participants to demonstrate the cross-cultural validity of the survey as a measure of FQoL in Malaysia.
As indicated in the Introduction, the primary purpose of the study was to appreciate the quality of life of families that included children with disabilities with a view to developing recommendations that might assist in improving the level of satisfaction with their lives. The results can be helpful in suggesting some policy directions and supports for families. As noted earlier, it might be helpful to develop increased opportunities in various life domains based on family perceived needs, for example, increased opportunities in domains such as ‘support from others’ through the development of family organisations and/or increased service support opportunities through expansion of current services and the addition of new ones, as well as improving opportunities in other domains.
The present study involved families with children who had diverse disabilities. R. I. Brown et al.'s (2006) results from a Canadian population showed that children with different diagnoses gave rise to different levels of family satisfaction across the various domains. Future research should therefore analyse data from this perspective, as this may indicate specific areas of need for particular families.
In addition to the development of recommendations that support families, geopolitical factors that characterise Malaysian society, as outlined in the Introduction, and results from the current study suggest a number of useful research questions for future studies including:
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Are there differences in perceived quality of life of families that include children with disabilities among different racial groups in Malaysia?
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Are there differences in the quality of life of Malaysian families that make use of available services to support their family member(s) with disabilities and those who do not?
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Are there differences in the quality of life of families that include children with disabilities between different regions within Malaysia?
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What is the impact of Malaysia's continuing economic development on the quality of life of families that include children with disabilities?
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Are there differences between the quality of life of Malaysian families that include adults with disabilities as compared to those that include children with DD/ID?
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Are there substantial differences between Malaysian families that include persons with disabilities as compared to families that do not?
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Are the Family Quality of Life Survey (I. Brown et al. 2006) and the Beach Center Survey (Beach Center on Disability 2003) equivalent in their ability to measure FQoL of Malaysian families that include persons with disabilities and what advantages and disadvantages does each provide?
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Does the additional information provided by the full version of the Family Quality of Life Survey (I. Brown et al. 2006) allow greater awareness and understanding of the FQoL issues within Malaysia and in comparison to other countries?
Acknowledgements
We would like to thank the family members that participated in this research. We are grateful for their willingness to share their views during the interview process. We also wish to thank the staff at Yayasan Sultan Idris Shah who acted as interviewers during data collection and, in particular, Mr Benny Ragland and Ms Barathy, who assisted with the organisation of the interviews. We are grateful to the Office of Research Services at Mount Royal University for providing the financial support that facilitated this study.
