Do health and social support and personal autonomy have an influence on the health-related quality of life of individuals with intellectual disability?

People with disabilities are an important population group which in 2008 represented 8.5% (3,847,900 people) of the Spanish population. This quantitative impact makes it necessary to assess the major healthcare and social challenges, as well as the social and healthcare costs which it entails, given the levels of dependence of these people for families and for Society [1, 2].

Social support has been significantly associated to the Health-Disease process, and the perception of social support by individuals and their relatives has been systematically related to a good health. On the contrary, dysfunctional or discontinuous social support, or its absence, increases the vulnerability of patients to health problems and diseases. Also, the influence of social support has been observed on other positive health indicators, such as Well-being [3], perceived Health [4] and Quality of Life [5]. Perceived health improves health-related quality of life (HRQoL), and adding social support can improve Well-being, mainly physical and emotional.

Most healthcare professionals are aware that it is necessary to implement a comprehensive policy if we want socio-health care to meet the needs and demands of the most vulnerable social groups in order to achieve a higher degree of integration which guarantees equality of opportunities and equity for these population groups [6]. In this regard, and if we want this inclusion to be effective, it is necessary to obtain the highest possible individual autonomy through the achievement of the maximum development of their physical, cognitive and emotional abilities and/or competences, thus creating adequate and normalized social dynamics which enable individuals with intellectual disability (IIDs) to carry out their basic daily activities and prevent deficiencies or limitations in their activity which may restrict their participation and have an influence on or lead to additional problems and/or dependence.

In order to work in these three professional areas, the approach needs to be multidisciplinary, as an essential tool in the education of IIDs or individuals with developmental disability. For this reason, caregivers, educators, physicians, physical therapists, occupational therapists, speech therapists, psychologists and other professionals must work as a team to correct or minimize those alterations as best as possible, and to guarantee the maximum individual autonomy and social integration so that any person with any kind of disability may have the possibility to come as close as possible to the standard levels of well-being and health-related quality of life (HRQoL) [7] of the general population.

The objective of this social and applied research has been to assess the association and influence of comprehensive care and social support services received by institutionalized IIDs on the improvement of their individual autonomy, their well-being and their HRQoL. With this, the authors intend to increase and improve the evidence on the importance that supports and social assistance have on the quality of life and well-being of this population group.

The study includes 162 adult patients, 58% (94) are men and 42% (68) are women. The average age is 50.8 years ± SD 12.85 (range: 21-80 years). Most of the subjects live in residential homes and go to occupational and/or leisure centres (112; 69.1%). The degree of disability of these people ranges from 36 to 100%, and the average is 76.17% ± SD 10.38.

Table 2 shows the quantitative data obtained in the different categories, sub-scales and dimensions. It may be highlighted that the average score for physical dimension was 66.59 (± SD 23.28) out of a total of 91 points, whereas the score for the cognitive dimension is 20.17 (± SD 10.25), out of a maximum of 35 points.

Figure 1 compares the values obtained in the institutionalized population with intellectual disability with the reference values of the general population and the values of their non-institutionalized peers. The largest differences are observed in the Social Functioning component, both between the two groups of IIDs (institutionalized and non-institutionalized) and with regard to the general population of reference.

The association study between the sociodemographic variables included and the different scales/surveys of functional assessment and HRQoL used in the study reveals some results which are worth highlighting. The independent variable sex is not significantly associated (p > 0.05) to any of the scales, sub-scales, domains or components of the different surveys and/or scales, whereas the variable age is significantly associated to the perceived social support in the Duke-UNC questionnaire (p = 0.027) and to some dimensions of the SF-36 Survey: Physical Functioning (p = 0.029), Vitality (p = 0.009) and Mental Health (p = 0.045). With regard to the independent variable rural/urban origin, it is significantly associated to perceived social support in the Duke-UNC Questionnaire (p < 0.001), the cognitive domain of the FIM Scale (p = 0.015) and some dimensions of the SF-36 Survey: Physical Functioning (p = 0.012), General Health (p = 0.016), Vitality (p = 0.001) and Mental Health (p = 0.001). With regard to the degree of disability, it was significantly associated to all the sub-scales and domains of the FIM Scale (p < 0.05), but not with the perceived social support of the Duke-UNC Questionnaire or any of the dimensions of the SF-36 Survey (p > 0.05).

Our findings show that the IIDs in our study report an adequate level of Perceived Social Support (PSS), and that families are the main providers of that support. These results are explained by the role traditionally played by families in Spain. These observations are in keeping with those of other authors which claim that family support is associated to a better perception of quality of life, although we are aware that this role may be overvalued compared with other types of social support [19].

Most of the participants in the study have a good family support, which represents a mechanism of protection and tutelage against stressful situations, since the data reveal that a normal functioning family network fulfils a social function and a social responsibility. Recent studies carried out in Spain highlight the relevant role of families, which have beneficial effects during adult and old age because they make it possible to manage stressful situations and they act as a protective element [20]. This role is beginning to be assessed with new tools, and it is therefore still necessary to establish the validity and reliability of these results [21].

In this study, the sample of the analysis is made up of IIDs who live in institutional residential centres and attend occupational and/or leisure centres with similar human and professional resources for their care, since they all belong to the same federation of associations of IIDs (FEAPS). Therefore, they all have the same aim and organic and functional structure. Consequently, users receive virtually constant support and supervision by their caregivers and educators, in spite of the fact that in some cases it may not be really necessary. We are aware that this factor may have an influence on the results, since it reduces the real level of independence of each subject; however, it is necessary to assess the adaptation and effectiveness of these centres with regard to their main aim, which is to improve the Quality of Life of IIDs. This is an aspect which is beginning to be assessed in other countries as well [22]. With regard to non-institutionalized IIDs, significant differences are observed with regard to the factors of Physical Functioning, General Health, Social Functioning and Role-Emotional, probably due to a worse situation and to the fact that they spend more time in the centres and less time is dedicated to other interpersonal and social relationships [17]. This result is coherent, since the components of Physical Functioning and Role-Physical are determinant factors for General Health and Vitality. On the other hand, Social Functioning is conditioned by these elements, but mainly by the attitude of the parents and guardians. With regard to the Mental Health component, which shows a similar level in both populations, this finding may be due to a lack of understanding and objective judgement on the implications of this component [17].

With regard to the relation between social functioning and emotional state, the sample is characterized by the possibility of communicating with and showing affection or empathy to other people, which makes it possible to attain a dynamic balance in their emotional state. Consequently, social support is related to their emotional well-being, and it has been proven that the more perceived social support there is, the less emotional problems will the older IID develop. The results confirm the important role played by social support and services on emotional state and perceived health during adult age. The subjects who live within a community context enjoy a better psychosocial adjustment, which is reflected in a higher participatory and perceived social support, whereas residents without social support report a poorer state of physical and emotional health, with low levels of self-esteem, and with friends as the main source of support. This aspect has been highlighted by a recently published systematic review in relation with the general population [23].

This finding confirms the existing relation between life conditions and personal satisfaction which is influenced by personal values and determines the quality of life of people. Therefore, it may be claimed that better life conditions lead to a better quality of life; and that the higher the personal satisfaction, the higher the Quality of Life, and that the more culture and maturity (personal values), the higher the Quality of Life [11, 14].

All these findings have been proven in a sample of institutionalized and non-institutionalized subjects over 65 years old, in which it was observed that the relational aspect was the most relevant one in non-institutionalized elderly people, and that they derived a high perception of satisfaction through family support, whereas for institutionalized subjects, the main source of support were social relational aspects [24]. The positive effect provided by PSS is clear in the general population: these benefits represent higher well-being for elderly people and their families, decrease the feelings of isolation and promote healthy behaviour. More specifically, in the field of Health, social support is important to face stress and disease, but we must be aware that in IIDs, supportive interpersonal and social relations may be both positive and negative, as some studies have reported [25]. Social support has been presented as a useful element in the maintenance of Health and to prevent the adjustment disorders and psychopathologies which are characteristic of IIDs [26]. It may also play an important role in the reduced prevalence of some classic risk factors, such as tobacco and alcohol. This last factor has not been widely researched in IIDs because families tend to be overprotective and reduce the consumption of these substances [27]; but some essays are starting to assess support interventions to reduce their consumption [28]. On the other hand, some recent studies claim that social support does not replace formal healthcare with regard to Health, but that it is a complement for it [29].

Finally, with regard to the PSS measured by the Duke-UNC questionnaire, we have observed a favourable assessment of their social relations (relatives and close friends), probably related to the possibility of maintaining an empathic and emotive communication with them, both at an affective and at a confidential level. It may be claimed that the level of affective and confidential support and the total perceived support level of the sample are relevant because they largely exceed the established value of reference from a healthcare perspective. In our country, there are only studies of interventions with caregivers of dependent people, elderly people and immobilized patients at their homes [30–32].

It may be added that based on what we have observed through the SF-36 Survey in this sample of IIDs, this deficit in cognitive knowledge protects the patients against the current chronic and/or neurodegenerative diseases which are associated to the process of ageing and which represent the biggest concern in the general population. The cognitive deficit of IIDs with regard to the concepts of Health-Disease acts as a simple protection in which they are not aware of the transcendence of certain ailments [33, 34]. This mechanism probably works similarly to the way in which their relatives protect them from classic risk factors like tobacco and alcohol consumption and to the way in which their family and social support assist them in their daily life to meet the social integration challenges and needs that may arise [16, 27].

In conclusion, we may declare that Individuals with Intellectual Disability with a higher degree of Personal Autonomy associated to received and perceived family and institutional support report a significantly higher General Health, Well-being and HRQoL than subjects who are more dependent and have less support.

Finally, it will be necessary to carry out future intervention studies that combine qualitative and quantitative methodologies to assess HRQoL, PSS and Autonomy in people with different degrees and types of disability in order to enact the Rights established in the UN Convention on the Rights of Persons with Disabilities and, consequently, to provide a better Social Function and Integration.