How to stay afloat

An explicit aim of the Carers and Disabled Children Act 2000 is
achieving “the outcomes the carer would want to see”.¹
But how realistic is this? In a recent survey by the Association of
Directors of Social Services, most agencies suggested that a lack
of resources was inhibiting implementation of the act.²
Practitioners can find carer assessments daunting, frustrating, and
perhaps even pointless. There is also an understandable fear of
raising expectations when there are few services to offer in
response.

But our study suggests that even where there is a lack of
resources, focusing on outcomes during assessments and reviews of
their circumstances is valuable to all (see panel,
right).³

In this project, researchers from York University’s Social Policy
Research Unit, staff from Bradford social services, and carers of
older people, developed and tested practice tools which focused on
outcomes. The project aimed to enhance practice, while also finding
useful ways of routinely collecting information about the impact of
services on carers’ lives.

The tools included a range of self-completion questionnaires: some
originally developed for use in research,⁴ and others
designed with staff and carers to fit the local context. These were
used to stimulate a discussion with carers about what outcomes were
important to them, both at the assessment, and at the review stage.
The carers’ desired outcomes and ways of meeting them were
recorded, along with carers’ feedback, on a single summary sheet.
This approach encapsulated three changes to practice which
practitioners and carers found helpful.

The first change involved moving away from “problems” and “service
inputs” to a system directed towards the impact of any help
offered. This meant exploring with the carer at the start what
their desired outcomes were – what changes they wanted to make –
and then negotiating, implementing, and reviewing the care plan
with these in mind.

This was not easy. Initially, assessors were unsure whether
“outcome” was a useful concept. But the results of earlier
consultations with carers helped to demystify the concept,
highlighting four key dimensions of outcome they viewed as
important (see panel below). These were incorporated into the
study’s practice tools.

Overall, the practice tools prompted assessors and carers to think
more broadly about care-giving. This was especially true for the
in-depth assessment tools, which invited the carer to highlight
their satisfactions and the strategies they preferred for managing
caring, as well as difficulties they faced. This generated a more
holistic understanding of a carer’s perceptions of their role, and
outcomes which were important to them. For example, in relation to
short breaks, discussion with carers was directed to what they
would like to achieve as a result of the break. Experienced
practitioners were surprised at the possibilities this opened up.
One practitioner said: “He [the carer] got quite excited about
doing courses at college in the evenings and using a sitter at a
particular time so he could study.” Another remarked: “I’d never of
thought of suggesting that, and she would never have thought of
saying: ‘I’d like to go for an early morning swim’.”

Thus any help offered could be focused more specifically on making
a real difference to the carer’s quality of life.

The second area of change related to the use of practice tools as a
means of involving carers. Two underpinning principles were to
recognise the expertise of the carer (alongside that of user and
practitioner), and to ensure a meaningful exchange of information
between all parties as a basis for joint
decision-making.⁵

Practitioners agreed with these principles, but acknowledged that
current practice tends to assume the professional is the expert –
defining the problem and solution on the basis of information
gathered from carer and user. In this outcome-focused approach,
professional expertise remains important, but is used to facilitate
the carer’s active participation in the process, as well as
professional skills to bear.

Some flexibility was helpful in assessment, with the option of a
short, introductory questionnaire, and a series of three more
detailed multi-choice questionnaires. Although intended as part of
a two-staged process, these tools could be used in different ways
according to the carer’s preference, circumstances, the stage of
contact and the degree of trust established. Many carers
appreciated completing the questionnaires themselves as a means of
preparing for discussion with the assessor, while others preferred
to talk them through with the assessor.

While this approach could take more time, practitioners felt that
they often gained a clearer and fuller picture of the carer’s
situation and views. Carers also reported that they felt valued,
and appreciated the chance to express their feelings and see things
from a new perspective. A key difference was that the carer’s voice
was central, leading to fresh insights.

An additional dimension to the usual review was the use of a short
carer’s feedback form which recorded the carer’s views about
outcomes. One important finding was that there were often positive
impacts of service beyond those originally intended (for example,
improved relationships and a sense of expertise in caring),
although there could also be shortfalls in meeting other
anticipated outcomes. This highlighted the value of asking about a
wide range of possible outcomes rather than only those specified at
assessment.

Finally, changes had to be made in the way the conclusions were
recorded to ensure that agreements with carers could be translated
into action. A short structured assessment summary proved useful in
focusing decision-making. This combined space for detailed comments
with a tick-box selection of pre-defined statements about outcomes
to be aimed for (based on the framework in the panel, below
left).

This study highlighted a range of developments to assessment and
review practices that can help to achieve positive outcomes for,
and with, carers. Our experience suggests that while additional
resources may be needed, not least for undertaking assessments,
much can be gained from a systematic approach, assisted by tools
which reflect the outcomes carers value, facilitate their
involvement and are suitably adapted to the local context.

– This work was undertaken by the Social Policy Research Unit
which receives support from the Department of Health; the views
expressed in this article are those of the author and not
necessarily those of the Department of Health.

Elinor Nicholas is research fellow at the Social Policy
Research Unit, University of York.

References

¹ Department of Health,
A Practitioner’s Guide to Assessment under the Carers and
Disabled Children Act 2000, para 29, page 11, DoH,
2001

² ADSS, Carers would
directly benefit from additional resources, ADSS press
release, www.adss.org.uk, April
2002

³ E Nicholas, “Implementing
an outcomes approach in carer assessment and review,” in H Qureshi
(ed), Outcomes in Social Care Practice, Outcomes in Community
Care Practice Number Seven, Social Policy Research Unit,
University of York, 2001

⁴ M Nolan, G Grant, J Keady,
Assessing the Needs of Family Carers, Pavilion,
1998

5 G Smale, G Tuson, N Biehal, P Marsh, Empowerment,
Assessment, Care Management and the Skilled Worker, National
Institute for Social Work, 1993

Websites

See
www.york.ac.uk/inst/spru
for a “research works” summary of this
project.

Practice benefits

Practitioners reported that this approach:

• Increased their awareness of the complexities of
  care-giving
• Assisted more focused and thorough assessments than usual
• Helped to avoid assumptions about carers’ ability to cope
• Clarified the distinct perspectives of carers and those they
  cared for
• Facilitated some creative individualised responses to
  carers   

Four key dimensions of outcome valued by carers of older
people 

A Quality of life for the older person (the carer’s view),
examples:  

• Company apart from carer 
• As independent as possible 
• Feel safe and secure 
• Have meaningful activity 

B Quality of life for the carer, examples 

• A life of their own (to work if they choose, pursue interests,
  etc) 
• Feel in control of their life 
• Have peace of mind 
• Be socially integrated   

C Managing the caring role, examples 

• Acceptable limits to caring  
• Feel confident and skilled in caring 
• To experience some satisfaction  
• A sense of being emotionally supported   

D Process outcomes (impacts of the way help is provided)
examples 

• Feel valued/respected 
• Expertise as a carer recognised 
• Have a say in how things are done 
• ‘Fit’ with life and routines