Wednesday, 21 September 2016

Respite care and parent stress with autism in mind

"While most studies found that respite care was associated with lower stress, several found that respite care was associated with higher stress."

That sentence is perhaps the most important finding recorded in the 'integrative review' published by Kim Whitmore [1] looking at "the relationship between respite care and stress among caregivers of children with ASD [autism spectrum disorder]."

Covering a "final sample of 11 primary research reports" the author provides yet another example of how sweeping generalisations in relation to autism really do no-one no good and how "tailoring respite care services to the unique family needs" is most definitely the way forward.

This is important stuff [2]. I've previously talked about how - again, minus any sweeping generalisations - parental stress in relation to raising a child with autism is one of the more pressing issues when it comes to the health and wellbeing of carers (see here). A steady flow of firsthand accounts also substantiate this finding even in some instances talking about "trauma-related symptomatology" [3]. Respite as one tool in the arsenal to care for the carers is something important; not least because of how such stress can sometimes severely impact on parental quality of life (see here) and potentially onward parent-child (and other) relationships. In amongst all the discussions about autism - how we view it and the implications for the person diagnosed - the effect of a diagnosis on parents/carers can sometimes get a little lost in all the noise.

What's more to say on this topic? Well, I think it is perhaps important to bring in the paper by Southby [4] who brought up an interesting point about how: "Residential respite appears to be the default conceptualization of 'respite' for carers, service users and stakeholders." It's not, and as per the organisation that I'm linked to, something like domiciliary support (otherwise known as home care) can sometimes provide a viable alternative to residential respite/placement. The knowledge that a person does not have to leave the family home, for example, can in some instances have a more positive impact on carer stress, and indeed, most probably will be less cost- and resource-intensive too. I don't also doubt that when it comes to stress for the person diagnosed with autism (an important consideration), for some the familiarity of the home environment is something not to be tinkered with by thoughts of residential respite. But again as per the idea of 'tailoring' resources to individual needs, for some families [5], residential respite every now-and-again should not be discounted.

Finally, it's all well and good talking about the benefits of respite and tailoring respite to meet individual needs, but the cold, hard reality of providing respite in these austere times should not also be forgotten. Indeed, as social purse strings are tightened alongside criteria for eligibility for such services, the factors associated with use and non-use of such services present some difficult choices [6] and are only likely to become even more narrow in future...

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[1] Whitmore KE. Respite Care and Stress Among Caregivers of Children With Autism Spectrum Disorder: An Integrative Review. J Pediatr Nurs. 2016 Aug 31. pii: S0882-5963(16)30150-6.

[2] Dyches TT. et al. Respite Care for Single Mothers of Children with Autism Spectrum Disorders. J Autism Dev Disord. 2016 Mar;46(3):812-24.

[3] Stewart M. et al. Through a trauma-based lens: A qualitative analysis of the experience of parenting a child with an autism spectrum disorder. Journal of Intellectual and Developmental Disability. 2016. Sep 16.

[4] Southby K. Barriers to non-residential respite care for adults with moderate to complex needs: A UK perspective. J Intellect Disabil. 2016 Jul 20. pii: 1744629516658577.

[5] Harper A. et al. Respite care, marital quality, and stress in parents of children with autism spectrum disorders. J Autism Dev Disord. 2013 Nov;43(11):2604-16.

[6] Preece D. & Jordan R. Short breaks services for children with autistic spectrum disorders: factors associated with service use and non-use. J Autism Dev Disord. 2007 Feb;37(2):374-85.

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ResearchBlogging.org Whitmore KE (2016). Respite Care and Stress Among Caregivers of Children With Autism Spectrum Disorder: An Integrative Review. Journal of pediatric nursing PMID: 27592275