This study provides a snapshot of Chinese PWPD’s QoL, the severity of their physical disability, the self-perceived QOCS, and their personal attitudes towards disability. It also examines the complex association between these variables, and the findings support our hypotheses, and suggest that the influence of severity of physical disability on QoL is not only exerted directly, but also indirectly through QOCS and their personal attitudes towards disability. However, QOCS plays a more important mediating role than PWPD’s attitude towards disability.
The results indicate that, even with a mild physical disability, Chinese PWPD’s QoL, personal attitude towards disability and perceived QOCS were unfavorable, and the response usually fluctuated between “not satisfied” and “neutral”. The result of a mild physical disability is consistent with the 2006 national survey among PWD in China, which reported that 70.4% of PWD had a mild or moderate disability . For the aspect of QoL, since this is one of the first studies to evaluate the level of QoL among PWD in China, we compared it with studies that also used the same Quality of Life scale in other countries/areas, and found that most domains of QoL in this study are worse than that of PWPD in developed countries/areas [14, 46]. In general, with certain support, people with a mild disability are mostly likely to participate in the normal social life, thus achieving better wellbeing and QoL . Therefore, it is meaningful to focus more on this subgroup to develop cost-effectiveness interventions to promote their participation, thus increase the average level of QoL among PWD in China. The results also showed that the worst domain of attitude towards disability was Inclusion. It implies that PWPD possibly experienced exclusion within Chinese society, such as difficulties in making friends, getting involved with others, as well as perceiving themselves as burdens to both their family and society . This is consistent with the results of a study which showed negative public attitude towards people with disability in China . A worse inclusive environment for disability is possibly because of people perceiving that disability as a kind of punishment for misdoing from a previous life in Chinese culture . Therefore, people living with disability are suffering not only the disability itself, but also the stigma and discrimination which prevented them from being included in the Chinese society . For the aspect of QOCS, the worst domain was Information, which means that PWPD in China have difficulties in accessing the information related to their rights on social services and assistance. The domains of Accessibility of care and Meeting needs were moderate, and seem somewhat better than the results from the 2006 national study among PWD in China, which reported that the percentage of unmet needs for assistance and support was more than 70% among PWD . A possible explanation is that most participants of the national survey were from rural areas , and our sample was from both urban and suburban areas where the health service has higher quality and more accessibility. Nevertheless, this study suggests that PWPD, who live in China’s largest metropolitans, experienced a fair social inclusive environment and health care for disability, plus somewhat worse QoL, and the situation may be even worse in rural areas in China. Future studies to understand the hierarchical factors influencing social inclusion and health care delivery for PWPD are warranted in China.
Also, this study highlights the important role of QOCS within the relationship between severity of disability and QoL. It is interesting to find that the indirect pathway through QOCS accounted for one third of the total effects and over 70% of indirect effect from severity to QoL, whereas the pathway through attitude towards disability contributed less. This result suggests that even with the same level of severity, PWPD who get sufficient care and support or have a better attitude towards disability are able to achieve better QoL, but improving QOCS may be more efficient on increasing QoL than changing the attitude towards disability. Several studies proved that PWD need assistance and support to achieve a good QoL and to be able to equally participate in social life with others [4, 49, 50]. On the other hand, it is also well known that negative attitude is a key factor which can hamper disabled persons’ participation and inclusion in social, economic, political and culture life, consequently reducing their QoL . However, there are few studies that have investigated the mediation effect of QOCS and attitude towards disability simultaneously. Improving quality of caring is especially essential for people with physical disability, since they are able to achieve relatively equal well-being if they obtain sufficient care. Also, it is obvious that improving health caring is a more specific process other than changing PWPD’s attitude, which is health workers’ priority to focus on . The results of the Quality of Care and Support scale in this study provided an overall evaluation of the care and support that PWPD received, but the specific needs of assistance and support to promote their participation and inclusion still need to be investigated in future studies. For example, for the aspect of PWD’s caregiver quality, most assistance and support for PWD comes from their family members in China, especially in rural areas . These informal caregivers have limited nursing knowledge [24, 26], hence the provided caring usually may not be able to meet the needs of disabled people. But the information about these family caregivers of PWD is limited in China, such as their health care quality, courtesy stigma, their attitudes towards disability, their physical and mental burdens, and their QoL, etc. China governments and public service organizations have placed higher priority on improving the lives of persons with disabilities, providing more services to ensure “Equality, Participation and Sharing” of PWD, from several different aspects, including education, rehabilitation, employment, social security, and social environment, etc . However, the knowledgement and the accessibility of these services are far from optimistic. In China, only 35.6% PWD had ever received medical services and aid; 12.5% had ever received aid and support services; 8.5% had ever received rehabilitation and training services; and only 7.3% had ever received free assistive devices . More research is warranted to better understand the current problems and barriers to achieving sufficient caring and support for disabled persons, and what works in overcoming them in different contexts, such as under different kinds of disability, rural or urban setting, etc.
It is also worthwhile to notice that, most PWPD in this study had lower level education, were currently unemployed, and were poorer than average level. In China, around two fifths of PWD who were over 15 years old were illiterate, and 85% of poor PWD had never advanced beyond middle school education . There was no schooling available for children with disabilities before 1979 in China. After Compulsory Education Law passed in 1986, Law of the People’s Republic of China on the Protection of Disabled Persons finally allowed children with disabilities equal rights to children without disabilities to access nine years of education, including six years elementary and three years middle school education . The average age of our sample was 51 years old, which means most of them were not able to access the universal education at their school age. A lower education level may affect employment, which in turn might lead to their lower economic status in society. That is possibly the reason why most of the participants were currently unemployed and poor. However, no empirical evidence exists in China to link this potential socioeconomic relationship. Longitudinal studies are needed to establish the causal relation between disability, education, employment, and poverty under different context for youth generation with disability in China. Furthermore, the education level of PWPD from suburban areas was significantly lower than those from urban areas. The lower education level thus led to suburban PWPD’s significant lower employment rate. Further studies are warranted to identify the differences in the accessibility and equality of all opportunities among urban, suburban and rural PWD in China. These results also reflected unfavorable conditions of the implementation on the policy of disabled persons’ equal rights to education in suburban or rural China. The translation of disability-related policy implementation from urban context to suburban or rural context also needs to be further investigated in China, especially for coordination of local resources and personnel to achieve the equal rights for PWD in rural areas .
The study’s results should be viewed in light of some limitations. The present study used a cross-sectional design so that causal relationships cannot be drawn. Furthermore, the study sample was heterogeneous in etiology, however, this limitation has been shared by other published studies [20, 53]. Finally, among this sample, many participants reported a longer duration of years of disability which may have adapted them to their disability, thus their attitude towards disability and their demands or needs may be quite different from people experiencing a newer disability. However, we adjusted the duration of disability in our model to address this issue, but further longitudinal studies are warranted to uncover the potentially different trends in attitude and access to services depending on length of time with disability.