USING THE ICF TO INFORM
SERVICE DELIVERY:
THE AFRICAN EXPERIENCE
Soraya Maart and Jennifer Jelsma
Department of Health and Rehabilitation
Sciences
University of Cape Town
Introduction
• Africa is a continent of great contrasts in terms of
resources and health care availability.
• The limited health care resources in the public sector
require innovative measures be taken to adequately
address the quadruple burden of disease, and the
marginal impact being made on the health related
Millennium Development Goals (MDG).
• Due to the advancement of medical interventions mortality
rates have reduced, with an increase in morbidity and
persons living with disability.
Background
• In August 2011, The SA Department of Health released
its Green paper on the planned NHI policy to be
implemented in 2014.
• In its Medium Term Strategic Framework it proposes the
re-engineering of the PHC approach to ensure access to
health services for all.
• However the value of rehabilitation in improving life
expectancy or the quality of life among South Africans
does not appear to be appreciated
• Rehabilitation services are not explicitly incorporated into
the overall service scheme.
Background
One of the reasons for the exclusion of rehabilitation
services could be the lack of data related to the prevalence
and impact of disability.
• Developing countries have poor information systems and
are still having trouble in getting accurate morbidity and
functioning data.
• Consequently, the impact of functioning is not adequately
factored into the BoD, and BoD studies tend to rely on
secondary data and extrapolation of mortality data
(Bradshaw, 2003)
Aims of the presentation
As highlighted in the World Report on Disability, data on the
needs of people with disabilities, both met and unmet, are
important for the implementation of policy and programmes
to ensure an inclusive society (WHO, 2011).
This presentation presents the efforts made in South Africa
and Rwanda to meet this information gap, through the use
of the ICF.
It will provide examples of attempts made to implement
data collection within
•the public sector for policy formulation,
• an institutional setting for patient management and
•in the community to assess policy implementation.
In addition, as HIV is of such concern in the Sub Saharan
region, the results of different community surveys of
functioning in HIV and the policy implications of these will
be discussed.
The Public Sector of SA
• In 2008, the DoH wished to improve data available on
functioning and commissioned the training of rehab
workers across the provinces.
• Rehabilitation professionals underwent training in the
conceptual framework, possible uses and coding of the
ICF
• However, the training was perceived to be superficial and
participants were still not confident to engage with ICF
• A pilot study was instigated and a data collection form
was developed
Public sector – Tertiary hospital
• Two year delay from training to piloting
• Took one and half hours to complete the form on known
•
•
•
•
•
•
patients
Staff struggled with the qualifiers and environmental and
contextual factors
Debate regarding treating patient vs completing a form for
1.5hours
Staff did not understand the bigger picture
For stats purposes, head counts are the most important
No information system available to capture data obtained.
The staff viewed the coding as extra work
Rehabilitation Institution
• Staff used ICF approach in patient assessment to change
•
•
•
•
from a provider driven system to a patient driven system
Assessment parameters were defined by:
- the discharge environment and
- the functional skill requirements for re-integration
Multi disciplinary approach was essential
This approach showed reductions in overall length of stay –
having financial benefits to the institution and state.
The ICF conceptualization was used in the development of
the CECRI (Client enablement and community
reintegration pogramme)- no codes used
Outcome Levels
•0
Physiologic instability
•I
Physiologic stability
• II
Physiologic maintenance
• III Residential reintegration
• IV Community reintegration
•V
Productive activity
Landrum PK, Schmidt ND, McLean A (ed) (1995)
Outcome-oriented Rehabilitation, Aspen
Publishers, Inc, Gaithersburg
Use of the CECRI:
• Barriers to community
• LEVEL 4 & 5
reintegration/enablement
• Resources/Facilitators
• Social/Community
•
reintegration
• ADL’s Mobility
•
• Body Function
•
• Post Discharge MX
LEVEL 3 & 4
LEVEL 2
LEVEL 2, 3, 4 & 5
Community study– Urban and rural
environmental factors
• In South Africa, all people with disabilities should receive
•
•
•
•
a disability grant of approx $100 per month
It is national policy that all buildings should be accessible
to all people
There is a national policy (NIDS) of moving towards
inclusion of PLWD at all levels, education as well as
employment
There is a big divide in the income levels and employment
possibilities between urban and rural dwellers
Study was undertaken to establish whether these policies
are being implemented
Policy implementation
• The specific objectives
were to identify whether
policies related to access
where being implemented
and whether the barriers
were different for those
living in the Eastern and
Western Cape of South
Africa.
Policy implementation
• 244 rural and 61 urban
respondents with
disabilities were identified
through a snowballing
technique. 45% were
male.
• The ICF checklist was
used to establish the
environmental barriers
experienced by the
participants
% Reporting problems
Type of Barrier:
Eastern Cape
Western Cape
chi square
p-value
13.0
25.5
9.2
0.002
E115 daily living
23.7
28.9
1.1
NS*
E120 mobility
29.5
41.8
5.4
0.02
E125 communication
24.5
34.0
3.6
0.06*
E150 Public Buildings
27.7
54.1
24.5
<0.001
E155 Private Buildings
24.5
38.1
7.2
0.007
Mean % reporting
23.8
37.0
4.0
.046
Products and
technology
E110 eating &
medicine
problems
Natural environment and human made changes to the environment
Results
Type of Barrier:
Eastern Cape
Western Cape
chi square
p-value
E525 Housing
25.2
42.9
11.8
0.001
E535 Communication
26.0
29.2
0.4
NS*
E540 Transport
27.4
26.8
0.02
NS*
E550 Legal
18.1
38.1
17.9
<0.001
E570 Social Security
22.1
24.5
0.3
NS*
E575 Societal Support
18.6
14.3
1.0
NS*
E580 Health
12.9
12.2
0.03
NS*
E585 Education
34.7
45.9
4.2
0.04
E590 Labour
42.7
47.4
0.7
NS*
Mean % problems
25.3
31.2
0.89
NS*
Services
Accessibility
• More than 50% of the urban sample reported barriers with
access to public buildings.
• Study was done 7 years after the publication of the
Integrated National Disability Strategy (INDS) of South
Africa, which specifically recommends that the National
Building Regulations be amended to allow barrier-free
access to all buildings.
Employment and education access
• More than 40% of both samples reported barriers to
employment
• 35% of rural and 46% of urban respondents reported
barriers to education.
• Universal access to employment and education is clearly
not yet implemented.
There was, however, no difference between the income of
the respondents with disabilities and a control group
consisting of their neighbours. The Disability Grant system
seems to be working.
Lessons learnt
• Policy implementation needs to be constantly monitored
and the environmental section of the ICF can be utilised
to good effect
• The use of the ICF checklist made identification of
different barriers possible.
• Although the information gained was very useful and
made intuitive sense, the checklist does not adequately
specify the items and a derived instrument should be
used in the future.
Services for PLWHIVA
• Rwanda and South Africa are among the ten countries in
Sub-Saharan Africa most severely affected by the
pandemic of HIV/AIDS (WHO, 2005).
• For most people who are able to access and tolerate ART,
HIV has become a chronic condition characterised by
cycles of illness and wellness (Rusch, et al., 2004).
• There have been several studies on the functional status
of people living with HIV. Each of these had policy
implications.
Studies -Rwanda
• Problem is that patients report
•
•
•
•
monthly for medication but do not get
referred on to other services that they
might require.
Aim of the study was to identify the
functional needs of PLWHIV in order
to develop appropriate referral
pathways within
Based on ICF checklist and published
data to develop the impairment set
Used WHO-DAS II for functional
limitations in HIV.
Fifteen health centres throughout the
country were visited between June
and August 2010. 502 questionnaires
were completed and were included in
analysis
Results
• The most common problems reported were “Doing things
for relaxation or leisure” (84%), fatigueability (83%), Pain
(63%) and “Standing for long periods” (53%).
• CHAID analysis indicated that the impairment of
discomfort with sexual intercourse was most strongly
associated with “doings things for relaxation”
• Further analysis indicated that the ability to stand for a
long time was found to be associated with joint mobility,
skin sensation, memory functions and muscle strength.
Lessons learned
• The use of the ICF resulted in a data set that can and will
be used to raise the awareness of health workers of the
functional problems associated with HIV
• As intended, the ICF will enable inter-disciplinary and
multi-disciplinary discourse around these issues to take
place.
Combined results of three studies
• The results of four studies on HIV were combined into a
single paper. These were done before anti-retroviral
therapy was available in SA.
• Mostly gay population in Brazil – all on ARVs
• People in early stages of HIV in South Africa – no ARVs
or limited access
• Mine workers in SA who were given ARVs by their
employers
• Patients admitted to hospital with AIDS
Results
• Common problems experienced in all groups related to
•
•
•
•
weight maintenance,
Mental functions presented the most problems in all
groups, with sleep (50%, 92/185), energy and drive (45%,
83/185), and emotional functions (49%, 90/185) being the
most affected.
In those on long-term therapy, body image affected 93%
(39/42) and was a major problem.
The other groups reported pain as a problem, and those
with limited access to treatment also reported mobility
problems.
Cardiopulmonary functions were affected in all groups.
Results
• The long-term ARV group reported few activity limitations
but a greater number of participation restrictions than the
other two groups.
• The group in full time employment on ARVs reported the
least problems in all areas
• The hospitalised group reported the most problems in
impairments and activity limitations.
Lessons learned
• The dramatic impact of ARVs on the functioning of PLHIV
was clearly demonstrated by these studies. As the
provision of ARVs was still controversial in SA, this was
an important finding with considerable policy implications.
• The use of the ICF codes enabled comparisons across
countries and across languages (English, Xhosa, Sotho
and Portuguese)
• The impact of environmental factors (e.g. the availability
of appropriate products, medication) on functioning was
obvious.
• The limitation of simply recording health condition (HIV)
was highlighted as the presentations of the groups were
so different.
Conclusion
• These two studies showed that the ICF was effective in
identifying the main problems associated with HIV/AIDS as well
as the impact of access to ART.
• This type of data could be used to advocate for the mandatory
access to ART as well as the inclusion of respective health
professionals in the multi disciplinary team approach to care.
Conclusions of presentation
• ICF has been used to collect varied and useful
information
• Data collection seems to be useful when it is undertaken
for a specific purpose, such as in the community surveys,
as part of a time defined study.
• Unless there is buy-in from those who do the data
collection and unless this data is collated and channelled
back to the users and service providers, routine data
collection for statistical purposes is unlikely to be
successful.
Acknowledgements
• University of Sydney and the University of Cape Town
• Lionel Naidoo- Assistant Director Groote Schuur Hospital
• Mansur Cloete, CEO, Gauteng Rehabilitation Hospital
• Maluta Tshivhase, Assistant Director, National Department
of Health
• Helen Myezwa, HOD Division of Physiotherapy University
of Witwatersrand
• Jean Kagwisa- PhD student , Kigali Health Institute