Saturday, 27 April 2019

"The burden of care of mothers as caregivers of ASD children leads to suicidal ideation among them"

I appreciate that the title heading this post - "The burden of care of mothers as caregivers of ASD [autism spectrum disorder] children leads to suicidal ideation among them" - derived from the findings reported by Bushra Akram and colleagues [1] is (a) a rather sweeping generalisation, and (b) not likely to be met with great enthusiasm by some/many people. I say that on the basis that words like 'burden of care' carry significant emotional meaning, even if only trying to describe "the psychological, emotional, social and economic challenges that are experienced by a caregiver of mentally or physically ill person."

Language aside, I did want to blog about the Akram findings because they represent another uncomfortable topic that needs to be talked about and further researched in relation to autism. They bring to our attention how parenting is not always about smiles, fluffy clouds and rainbows but sometimes can be bloody difficult. More so when something like autism is part and parcel of the family unit (see here and see here). Such recognition of reality is not meant to stigmatise anyone or devalue them as a person. It merely implies that burying heads in the sand for the sake of good PR or other reasons helps no-one in the long run. Least of all children. And in that respect, there seems a change recently (see here)...

I think you've kinda got the gist of what Akram et al were looking at in their study. They managed to recruit over 300 mums of children diagnosed with an autism spectrum disorder (ASD) from various cities in Pakistan. Diagnosis was apparently 'assessed' via DSM-5 criteria (see here). We're also told that: "Single mothers or those with more than 1 child with disability were excluded." Various questionnaires were delivered to participants - "the 19-item Burden Assessment [Scale]... (BAS), 12-item Multi-Dimensional Scale of Perceived Social Support...(MSPPS) and 5-item Suicidal Ideation Attributes Scale... (SIDAS)" - pertinent to the study aims. The quality of the translation of some of the instruments into Urdu was tested on a favourite cohort, psychology students.

Results: "The relationship between burden of care and suicidal ideation was positive, but perceived social support had a negative association with burden and with suicidal ideation." What this translates into is that if mums reported that a high score when it came to 'burden of care' so their scores regarding suicide ideation also seemed to be high. Also, if mums perceived themselves to have little or less social support, so they more more likely to experience a burden of care and/or suicidal ideation. This is important if not entirely unexpected.

Of course there are other potential explanations for the findings. Depression, something that seems to have some important links to something like suicidal ideation, was not looked at in the Akram study. Given some previous independent research on depression in parents/guardians of children with autism (see here), depression can't be discounted as playing an important role in suicidal ideation in this case. Likewise, factors such as money and employment would probably play some sort of role too. There are probably a myriad of other intrinsic and external variables to consider.

But let's not over-analyse this over-and-above the actual results obtained by Akram. They really do make a case of more 'caring for the carers' investigation and action (see here). Minus any psychobabble [2] it's the small things that can make a difference. Y'know, things like offering respite to parents/guardians (see here) and ensuring that in these days of a connected world, parents/guardians of children with autism are also connected too (see here). I know it's not politically correct in some quarters to mention it, but such data also make a good case for looking at what can be done to alleviate/reduce some of the more challenging behaviours that can make parenting a child with autism more difficult. Oh, and whilst on the topic of parenting, yes, there is a place for helping parents who are struggling to manage and cope via the teaching of various strategies, but please, leave off the 'super-parenting' stuff for now (see here). Many parents are already super-parents.

And whilst on the topic of caring for the carers, it's worthwhile mentioning that where an autistic child has siblings they also require 'parenting' attention too (see here)...

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[1] Akram B. et al. Burden of care and Suicidal Ideation among Mothers of Children with Autism Spectrum Disorder: Perceived Social Support as a Moderator. J Pak Med Assoc. 2019; 69: 504.

[2] Lee GK. et al. Needs, strain, coping, and mental health among caregivers of individuals with autism spectrum disorder: A moderated mediation analysis. Autism. 2019 Mar 20:1362361319833678.

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