With the multivariate analysis, the identified factors influencing the parents’ quality of life were: being in a relationship, the support of the general practitioner, the level of education, having a child suffering from autism spectrum disorders, and long delays in the diagnosis.
The study’s strengths and weaknesses
The main strength of our survey is that it studies the quality of life of parents with children suffering from neurodevelopmental disorders of all kinds according to the new classification of June 2018.
The parents’ multi-centre recruitment, in structures offering different kinds of care, permitted to have a heterogeneous sample of parents with diverse characteristics as well as a representation of all neurodevelopmental disorders.
On top of this, using the approved PAR-DD-QOL survey used in other studies makes a comparison with results from literature possible.
This study allowed us to highlight the factors foreshadowing the parents’ quality of life in order to offer adequate care.
We received positive feedback from the parents who were pleased by the interest given to their daily lives.
The professionals who participated in the study found that it was an excellent communication tool with the parents in order to tackle this subject and to offer specific interventions aiming to better their quality of life.
One of the study’s limits was that the majority of respondents were mothers (81%). Therefore, we did not objectify differences in the quality of life between mothers and fathers.
We are also aware that our sample of 130 parents of children with ND constitutes a rather small number linked with a recruiting made by a single person. Furthermore, we were not able to check other factors, only significant in univariate analysis, although they were confirmed by the literature.
Comparison with the litterature
Support from the general practitioner betters the emotional aspect of the parental quality of life: this result only confirms the general practitioner’s crucial role in neurodevelopment disorders’ care. They already have an important role in the diagnosis, follow-up, coordination, and first-aid care for children suffering from neurodevelopmental disorders (18)(19). But they are also the entire family’s physician and they are the first to spot difficulties for the carers in the family. Parents expect the general practitioner to listen, to pay attention to their daily life, and to offer solutions according to their needs. (26)(27)
Parents in a relationship had better adaptive and general scores and they had a better self-appreciation of the quality of life.
Numerous studies highlighted that the parents’ marital status influenced their quality of life. Raising alone a child suffering from neurodevelopmental disorders can be a tremendous burden. The Cappe and al (5) study found that in the case of ASD, single parents are less prepared than parents in a relationship. They often experience irrational feelings of guilt when it comes to the apparition of autistic symptoms. In addition to this, they are confronted with their child’s lack of affect and a lack of material and affective support a partner could offer.
The health professionals’ role seems crucial to help parents in a relationship to not neglect their personal life and only focus on the child’s need by offering solutions to rest. When it comes to single parents they need help to develop a social network, for example by encouraging them to participate in discussion groups or parents’ associations.
Our study also permitted to highlight a more important impact autistic spectrum disorders have on the adaptive and general quality of life compared with other neurodevelopmental disorders.
Many studies were found in the literature which notes a lower level of quality of life for parents of children suffering from ASD compared with other disorders or with typical children. (12)(5)(20)
The literature journal The quality of life of parents of children with autism spectrum disorder by Vasilopoulou E. and Nisbert J revealed that parents of children with ASD had a lower quality of life compared with parents of children with normal neurodevelopment. It also highlighted variables associated with this inferior quality of life such as the children’s behavioural difficulties, being unemployed, being a single mother, or also a lack of social support. (23)
A Saudi study carried out to 306 families with handicapped children (mentally retarded, learning disorders, physical handicaps, autism) has shown that autism affects the parents’ quality of life the most. (24)
Indeed, the characteristics of autism spectrum disorders, the latency in the diagnosis, the associated sleep and behaviour disorders, and the chronic dependence of the children could explain this assessment.
Another hypothesis is that other neurodevelopmental disorders such as intellectual deficiency, motor, or sensory handicaps usually benefit from specialised care in specialised facilities from the beginning and the children are less in contact with the parents compared with ASD. This would probably explain why they affect the parents’ quality of life less.
The parents of children suffering from ASD need the most support possible.
In the journal from the literature Martin and al of 2019, 11 studies were analysed (4 for children with ADHD and 7 for children with ASD): out of 6 studies examining parental stress, 5 permitted to highlight a link with their child’s sleep disorders. (25) We then understand that the parents’ quality of life affects greatly the evolution of their child’s disorders and then, by extension, their care.
Our study showed that having a higher level of education is associated with a lower quality of life in its emotional, adaptive, and general dimensions.
These unexpected results are not aligned with many studies suggesting that parents with a good level of education seek to understand the disorders of their children and develop better strategies of resilience. (28)(20)(29)(30) A Taiwanese study found no link between the level of education and the parents’ quality of life. (31)
Furthermore, many sociology works pursue the hypothesis that parents with a high level of education have higher scholar aspirations for their children (32) and that the children’s level of social skills influences the familial quality of life (33) which could partly explain this result.
We also found that a long delay in the diagnosis influenced the general score and the general self-evaluation of the quality of life. This result was also found in an Iranian study that uncovered a link between this delay and maternal depression. (6)
When it comes to the difference in the participation to scientific studies between father and mother, many studies found that mothers accompany their children more than fathers in care facilities and answer more significantly to this type of survey. (21) It is found in the literature that neurodevelopmental disorders have a greater impact on mothers (22)(12).
To conclude, some factors had an impact on the parents’ quality of life only in univariate analysis, but we have found similar results in the literature.
Being less than 50 had an impact on the emotional and general dimensions and the general self-appreciation of the quality of life.
Studies found that ageing parents are worried about their children’s future as adults. They wonder where their child will live and who will take care of them if they are to die before them. (12)(13)(20)
A full-time education of the children helped the adaptive and general scores and the self-evaluation of the QOL.
This assessment was made by other studies which showed that difficulties to access to a permanent education impacted on the parents’ quality of life as they had to seek professional arrangements to take care of their children the remaining time. (34)(28)(35)
The number of dependant children suffering from ND influenced the adaptive dimension of the quality of life in our study. We have found a similar result for the fathers’ QOL in another study. (20)