The present study aimed to analyse the QoL of the families with offspring who had WS because obtaining a QoL profile allows support to be individualised planned.21 To do so, we started by taking the most recent conception of disability, understood as the result of the interaction between someone and their environment insofar as the availability of support would significantly favour their level of functioning.22,23 The obtained data were very interesting because they informed that it was not the degree of disability that determined the family’s QoL, rather the presence of disability itself. The same can be stated for the degree of dependence and the degree of need. Families do not perceive their QoL as being different according to these variables, which indicates a more homogeneous profile for the implications involved in being a family with WS. It is also worth stressing that parents’ perception does not change about their child’s evolutionary development, rather a certain consensus exists about the most outlined difficulties.
Regarding the QoL dimensions, the results obtained about the social inclusion subarea revealed that, despite more visibility, this groups’ social inclusion remains a pending issue, which agrees with the publications by Escudero and Martínez24 and by Gómez, Verdugo, Arias, Navas and Schalock.20
Next comes what could be the main limitation for these subjects’ QoL according to the obtained data: mastering self-determination.25 Wehmeyer and Garner26 stated that important decision making, like education centres or type of schooling, is made unilaterally by parents in infancy and adolescence, and the person with ID is not involved. Thus our data demonstrate that some differences exist for level of determination according to degree of dependence. Likewise, the results provided by families do not agree with those reported in other research works, which reflect that decision making is significantly linked with degree of disability.27
The results of the emotional well-being, physical well-being and material well-being dimensions indicate a moderate degree of satisfaction in these subareas.28,29 These results do not coincide with other research works, which state that the conduct problems stemming from emotional upsets tend to negatively impact both family and individual well-being.30 Also in relation to these categories, Guyard, Michelsen, Arnaud, Lyons, Cans and Fauconnier31 stress the increased economic expense of families with relations with ID, which negatively influences family QoL.
Once again the results given by parents for the rights dimension do not coincide with studies that have related this subarea to degree of disability. Turnbull and Turnbull32 add that, when disability is slight or moderate, parents tend to point out that people with ID have very few opportunities and that support is lacking to allow them to exercise their rights. Thus to a certain extent, families still perceive their children as being defenceless, which might sometimes lead to overprotection.33
Regarding these individuals’ personal development, the obtained data stress that parents generally assume that their offspring follow a continuous learning process of social skills, which are essential for personal development and, therefore, for a more than satisfactory QoL.34
The interpersonal relations dimension tends to be another of the worse dimensions because, in general, both people with ID and their families have fewer relations, and are more prone to the social isolation risk.35
It is also worth stressing that most of the scales were filled in by mothers, as opposed to a small percentage of fathers. This indicates that mothers are the main “carer” or reference person. In line with this, Mora, Córdoba, Bedoya and Verdugo36 state that the care responsibility is shouldered by mothers as they are in charge of their day-to-day lives. Rentería, Lleidas and Giraldo37 add that mothers are perceived to play a role that provides affection and care and, therefore, family stability.
Families perceive that the QoL of individuals with ID may differ from that held by professionals close to these patients.38 Hence it would be interesting to complement our data with those provided by professionals working with people with WS on a daily basis.