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The gathering together of available studies is a valuable exercise.
But the lack of such studies amongst consumers of child and adolescent
mental health services appears even more problematic than for adult
consumers. Clearly such research for adults involves a number of
barriers, not the least of which is the surety of purpose of the consumer
as they confront internal states and external indifference.
Structurally, the adult consumer does have a target for their input.
Also, the adult consumer can report personal experience that can be
related to other consumers and their confrontations with professionals,
according to both diagnosis and structural perspectives. Further, adult
consumers do have some mentors/advocates from whom to seek advice.
In child mental health none of these conditions for breaching
barriers seems to exist. Only the older children can advocate for
themselves, the younger ones have to rely on their carers. Thisis not a
problem of itself, necessarily, but as has been found for adult
consumers,relying on parents can lead to distortions of voice that involve
the presenting of the parents in favourable ways.
Secondly, diagnosis in child mental health is rarely stable enough to
develop a view of how services affect a diagnostic group, systematically.
Child mental health works most often with reactive conditions or
conditions which the interventions may well lead to the alleviation of the
diagnostic status. In turn, the safety in numbers and the strength that
comes from sharing experiences is much more difficult to establish; let
alone have a critical mass that encourages others to join such a process
and become advocates. In turn, patterns of systematic professional
conduct are not easily discerned or assembled as a recognisable service
barrier that would require re-design.
Thirdly, chronic diagnoses in child mental health do draw like
experienced parents together, but as advocacy groups for their particular
disorder (ADHD, Autism, Asperger's, and probable others that I do not
know of) to gain service, rather than to moderate service in favour of
consumer experience. These advocacy groups are begging for service rather
than seeking to re-model it. Further, the groups involve relatively rare
syndromes, as against the adult psychiatric population which has very
large numbers of consumers withinb each diagnosis.
Given these differences, can the authors (Sampson and House, 2002)
envisage consumer-led experience being able to be brought to bear on the
functioning of child and adolescent mental health services? Or, what
lessons from adult consumer input to program re-design might apply in
child and adolescent mental health?
Thankyou to the authors,
Jo Grimwade
Competing interests:
None declared
Competing interests:
No competing interests
17 December 2002
Jolyon R Grimwade
lecturer in Psychology, Victoria University
Victoria University, Box 14428, MCMC, Melbourne, Australia, 8001
When the Government’s National Service Framework was published, North
Cumbria Mental Health and Learning Disabilities NHS Trust seized the
opportunity to involve service users at all levels. Both users and staff
have benefitted from this initiative. The Trust now employs a full-time
User Involvement Coordinator through the Mental Health Institute at St
Martin’s College in Carlisle.
Competing interests:
None declared
Competing interests:
No competing interests
30 November 2002
Alasdair J Macdonald
Project Director
Mental Health Institute, St Martin's College, Carlisle CA1 2HH
Child consumer and parent/carer involvement
The gathering together of available studies is a valuable exercise.
But the lack of such studies amongst consumers of child and adolescent
mental health services appears even more problematic than for adult
consumers. Clearly such research for adults involves a number of
barriers, not the least of which is the surety of purpose of the consumer
as they confront internal states and external indifference.
Structurally, the adult consumer does have a target for their input.
Also, the adult consumer can report personal experience that can be
related to other consumers and their confrontations with professionals,
according to both diagnosis and structural perspectives. Further, adult
consumers do have some mentors/advocates from whom to seek advice.
In child mental health none of these conditions for breaching
barriers seems to exist. Only the older children can advocate for
themselves, the younger ones have to rely on their carers. Thisis not a
problem of itself, necessarily, but as has been found for adult
consumers,relying on parents can lead to distortions of voice that involve
the presenting of the parents in favourable ways.
Secondly, diagnosis in child mental health is rarely stable enough to
develop a view of how services affect a diagnostic group, systematically.
Child mental health works most often with reactive conditions or
conditions which the interventions may well lead to the alleviation of the
diagnostic status. In turn, the safety in numbers and the strength that
comes from sharing experiences is much more difficult to establish; let
alone have a critical mass that encourages others to join such a process
and become advocates. In turn, patterns of systematic professional
conduct are not easily discerned or assembled as a recognisable service
barrier that would require re-design.
Thirdly, chronic diagnoses in child mental health do draw like
experienced parents together, but as advocacy groups for their particular
disorder (ADHD, Autism, Asperger's, and probable others that I do not
know of) to gain service, rather than to moderate service in favour of
consumer experience. These advocacy groups are begging for service rather
than seeking to re-model it. Further, the groups involve relatively rare
syndromes, as against the adult psychiatric population which has very
large numbers of consumers withinb each diagnosis.
Given these differences, can the authors (Sampson and House, 2002)
envisage consumer-led experience being able to be brought to bear on the
functioning of child and adolescent mental health services? Or, what
lessons from adult consumer input to program re-design might apply in
child and adolescent mental health?
Thankyou to the authors,
Jo Grimwade
Competing interests:
None declared
Competing interests: No competing interests