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In her editorial, Craig[1] highlighted the need to distinguish
passive forms of user involvement -- where patients' views are elicited,
with the associated risk of 'tokenism' -- from active input where real
influence is possible. Similarly, Fudge et al[2] noted the vagueness of
the concept of user involvement, ranging from patient satisfaction surveys
to more active participation in areas such as peer support. In their
study, only small numbers of patients became involved in the development
of a stroke service. They raised the question of whether characteristics
of certain patient groups affect the implementation of user involvement.
We investigated interest in user involvement, and barriers to this,
among patients of a community mental health team with, predominantly,
chronic psychotic illness. We adopted a questionnaire format, following
which those expressing interest were invited to attend a focus group. We
aimed to determine the level of interest among patients in becoming
involved in the service as active users, helping to identify and set up
services for which there may be a need, or acting as user representatives
on interview panels or at governance meetings.
From a sample of 100 patients, one third completed the questionnaire.
Less than half expressed an interest in user involvement and 90% felt
there would be a barrier to this. Barriers cited were anxiety, lack of
knowledge and interest, transport, and a concern that opinions would not
be listened to. Of those attending a subsequent focus group, the main
concerns were anxieties relating to specific aspects of their care. This
resulted in difficulty generating a discussion around user involvement in
a broader sense, although anxiety and lack of knowledge were again raised
as impediments.
We highlight the difficulty in engaging patients from this
marginalised population in meaningful discussion around user involvement
with a view towards more active participation. Future attempts to elicit
attitudes to user involvement, as a means to encouraging more service
users to become involved in mental health services may benefit from
employing less formal methods, with views collected through discussion in
a more familiar environment. One example would be within informal groups
where patients and staff members already meet regularly, such as drop-ins
or activity groups.
[1] Craig GM. Involving Users in Developing Health Services. BMJ
2008; 286-7 (9 February)
[2] Fudge, N, Wolfe CDA, McKevitt, C. Assessing the Promise of User
Involvement in Health Service Development: ethnographic study. BMJ 2008;
313-17 (9 February)
Competing interests:
None declared
Competing interests:
No competing interests
25 February 2008
Jenny Jack
Specialist Registrar in Psychiatry
Rhodri Huws, Consultant Psychiatrist, Sheena Mansell, Clinical Psychologist, both East Glade Centre, 1 East Glade Crescent, Sheffield S12 4QN
Chesterfield Royal Hospital, Calow, Chesterfield, S44 5BL
User Involvement in Mental Health
In her editorial, Craig[1] highlighted the need to distinguish
passive forms of user involvement -- where patients' views are elicited,
with the associated risk of 'tokenism' -- from active input where real
influence is possible. Similarly, Fudge et al[2] noted the vagueness of
the concept of user involvement, ranging from patient satisfaction surveys
to more active participation in areas such as peer support. In their
study, only small numbers of patients became involved in the development
of a stroke service. They raised the question of whether characteristics
of certain patient groups affect the implementation of user involvement.
We investigated interest in user involvement, and barriers to this,
among patients of a community mental health team with, predominantly,
chronic psychotic illness. We adopted a questionnaire format, following
which those expressing interest were invited to attend a focus group. We
aimed to determine the level of interest among patients in becoming
involved in the service as active users, helping to identify and set up
services for which there may be a need, or acting as user representatives
on interview panels or at governance meetings.
From a sample of 100 patients, one third completed the questionnaire.
Less than half expressed an interest in user involvement and 90% felt
there would be a barrier to this. Barriers cited were anxiety, lack of
knowledge and interest, transport, and a concern that opinions would not
be listened to. Of those attending a subsequent focus group, the main
concerns were anxieties relating to specific aspects of their care. This
resulted in difficulty generating a discussion around user involvement in
a broader sense, although anxiety and lack of knowledge were again raised
as impediments.
We highlight the difficulty in engaging patients from this
marginalised population in meaningful discussion around user involvement
with a view towards more active participation. Future attempts to elicit
attitudes to user involvement, as a means to encouraging more service
users to become involved in mental health services may benefit from
employing less formal methods, with views collected through discussion in
a more familiar environment. One example would be within informal groups
where patients and staff members already meet regularly, such as drop-ins
or activity groups.
[1] Craig GM. Involving Users in Developing Health Services. BMJ
2008; 286-7 (9 February)
[2] Fudge, N, Wolfe CDA, McKevitt, C. Assessing the Promise of User
Involvement in Health Service Development: ethnographic study. BMJ 2008;
313-17 (9 February)
Competing interests:
None declared
Competing interests: No competing interests