PRIMARY CAREGIVERS’ EXPERIENCES OF SERVICES FOR PEOPLE WITH INTELLECTUAL DISABILITIES IN IRELAND

In the continued development of person-centred intellectual disability services, it is essential to consider primary caregivers’ viewpoints on the service their family member receives. Authors: J. Wolfe, J. Gogarty, N. Wolfe, J. Gleeson, M. Corby and C. Forkan E.T.C.I. Seville Lodge, Callan Rd. Kilkenny.

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Evaluation, Training and Consultancy International (ETCI) is an Irish-based agency that specialises in evaluation, research, training and development in services for people with disabilities. A preliminary summary of some of the main research studies that we have carried out in Irish services, with specific reference to the aspects of these reviews that sought primary caregivers’ viewpoints on services, is presented in this article. While the results of these studies are not completely generalisable (as they are not representative of all Irish services), they nevertheless present an interesting insight into some primary caregivers’ experiences and perceptions of services to people with intellectual disabilities.

While there have been some studies carried out on the issue of families’/primary caregivers’ experience of services, notably those of Walsh et al. (2001), Fitzgerald et al. (2000) and Doherty et al. (2000), the Irish literature is not extensive with regard to this important area.

ETCI has conducted over 35 reviews of services nationally over the last four years and primary-carer perspectives were gleaned in many of those reviews. Primary carers were randomly selected and asked to give their perspectives on services, using a standardised questionnaire. A total of 373 primary caregivers were sampled, and 157 of them completed a questionnaire either through postal or interview format. This represents a 42% response rate, which is considered to be acceptable from a research perspective (Nachmias and Nachmias 1994). The types of services that were the subject of these reviews were residential services, multidisciplinary support services, day services, supported employment services, resource centres and respite services to people with varying degrees of intellectual disability and autism. The services reviewed were based in many different counties and regions of Ireland.

What do primary caregivers think of the services received by their family member?

The following figures highlight primary caregivers’ viewpoints on intellectual disability services in several specific areas.

Key positive aspects of service provision identified by primary caregivers:

  1. The attitude and approach of staff
  2. The service helps to keep service users happy, doing things that they enjoy
  3. Communication between staff and the primary caregivers
  4. The care and attention given to service users
  5. Day services focussed on the needs of the individual (in certain services)

Key aspects of service provision requiring development, as identified by primary caregivers:

  1. More participation in the community for service users
  2. More activities for service users, particularly in the evenings and at weekends
  3. More involvement of primary caregivers in decision making in relation to their family members
  4. More information to and liaison with primary caregivers
  5. The availability of training for primary caregivers
  6. Access to and availability of multidisciplinary supports to service users
  7. Training for all staff
  8. The development of a support network for primary caregivers
  9. Formal supervision of staff
Conclusions

It is important to note that while the above figures represent the views of primary caregivers in the studies that we have carried out, the satisfaction ratings varied between and often within organisations, and while some service areas scored extremely well in most areas, this was not universal. Nevertheless, in general, many primary caregivers have positive experiences of services for persons with an intellectual disability in Ireland. This is particularly obvious with regard to the attitude and approach of staff, the quality of service being provided, and communication between primary caregivers and service providers. However, not all primary caregivers have had this experience and there are also specific areas of service provision that could be developed or improved further- The areas that received most comment were more community participation for service users, more activities in the evenings and at weekends for those service users receiving residential care, increased availability of multidisciplinary supports and more liaison with and training of primary care givers. An interesting point that emerged in several of the studies, was a distinct uncertainty from a group of primary caregivers as to what their family member is engaged in while attending services. There is an obvious need for more informing of primary caregivers in certain services.

The importance of eliciting primary caregivers’ viewpoints on services cannot and should not be underestimated. They have an integral role to play in the lives of their family members, regardless of the type of service that their family member attends and of the duration of their attendance. Their viewpoints are essential from an advocacy perspective, in contributing to the area of care and life planning and in the continued development of person-centred services for their family member. Furthermore, their viewpoints should be actively sought and encouraged on a regular basis and as part of any quality improvement system within services. Their perspectives need to be reflected significantly into any further development and planning of services that arise as a result of such a quality improvement approach.

The authors would also recommend that a major national study, aimed at eliciting primary caregivers’ perspectives of services in a wide range of areas, would be of particular benefit to the ongoing development of intellectual disability services in Ireland.

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