Tuesday 4 July 2017

Caring for the carers continued

Consider this post a brief extension to a previous one talking about how greater efforts need to be put into supporting those raising and caring for a person diagnosed as being on the autism spectrum (see here).

The science accompanying this post is that published by Cécile Rattaz and colleagues [1] who drew on data derived from the EpiTED cohort (see here), an initiative designed to "understand the heterogeneity of developmental trajectories among children with a diagnosis of PDD [pervasive developmental disorder] and the role of clinical, biological and environmental factors in their adaptive outcome." Researchers concluded that certain aspects associated with a diagnosis of autism in offspring - "young adults' level of adaptive skills... symptom severity and the presence of challenging behaviors" - can very much impact on parental quality of life (QoL). They argue for "the importance to propose specific interventions to target associated challenging behaviors in ASD [autism spectrum disorder]."

Quality of life when it comes to parents or primary caregivers of those young people on the autism spectrum is an often overlooked area when it comes to research and practice. Yes, the focus should quite rightly be on the person who lives with and experiences autism (in it's many different forms) but QoL for children/offspring is often inter-connected with QoL of parents and other family members. I appreciate that some might construe this work as autism presenting a 'burden' to the family and that is not something that anyone really wants to perpetuate. It is however important to realise that issues like challenging behaviours for example (bearing in mind what this covers) can affect many aspects of parenting behaviours, including those related to fatigue (see here) and perhaps further over the longer term [2]. When added to the dwindling resources available to parents (see here for example) there can be real strains placed on parents; more so bearing in mind other factors such as one-parent families and the demands placed on parents also potentially caring for siblings or even other family members.

There are no easy answers to the question of what to do to improve parental (and child) QoL in the context of autism. As mentioned, the sentiments of 'doing more with less' in these days of continued austerity for example, do not readily lend themselves to improving the situation in terms of the availability of something like respite care for example. The onus therefore continues to fall on parents and primary caregivers...

Music to close: The Saw Doctors - I Useta Lover.


[1] Rattaz C. et al. Quality of Life in Parents of Young Adults with ASD: EpiTED Cohort. J Autism Dev Disord. 2017 Jun 17.

[2] Benson PR. The impact of child and family stressors on the self-rated health of mothers of children with autism spectrum disorder: Associations with depressed mood over a 12-year period. Autism. 2017 Jun 1:1362361317697656.


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