1. Primary care nurses in a local Belgian setting
Responding to healthcare needs of people with disabilities

2. Deinstitutionalization of care for people with disability
Worldwide care for people with a disability (PD) shifting away from institutions towards more community-based services
In Belgium 264,602 registered PD*
In Flanders 129,021 in Flanders (BE)*
21,518 PD (16%) waiting
to receive care in community setting
 Primary care services to provide necessary care
*data from 2014

3. Primary care services unprepared to respond to shifted care
Expectancy
PCN addressing healthcare needs of PD
European data
PD & family caregivers are satisfied
with quality of care they receive 
Objective
Insight in nursing care delivered
by PCN to PD (at home & in residential care)
However
PCN feel insufficiently educated on
prevalence of pathologies presented in PD
how to respond to behavioural problems of PD
not knowing how to communicate with PD

4. Open-ended questions of survey
Questionnaire
Questions both closed & open
Based on expert opinion (team of 20 PCN & 4 GPs)
Topics:
mental and behavioural problems
medication policy
swallowing problems
monitoring of nutritional status
any other needs arising in the care for PD
Purposive sampling
Distrubuted electronically to 1547 PCN
Limburg (BE)
Home & residential care
Self-employed or employed by regional nursing organization
Responses (voluntary) of 588 PCN (response rate: 38%)

5. Findings - Collaboration
Impact of PD’s and informal caregiver’s behaviour on PCN’s working environment (reoccurring theme)
Counteracting
PD not having insight
Informal caregivers ignoring instructions
 Collaboration with PD & their family/friends
is a crucial part of PCN’s work.
Perquisite to collaborate with PD
Capacity to communicate
Being able to understand instructions

6. educators in institutions
PCN play a central role in the coordination of care for PD
Monitoring
nutritional status
primary care nurse GP
dietician
specialist
ergo- therapist
speech therapist
informal caregiver
physio- therapist
diabetes- educator
pharmacist
person
with disability
family
Medication policy
Swallowing problems
educators in institutions

7. Findings – “beyond standard” care
Omnipresence of PCN in all daily life activities of PD
to help with the mail,
to pick up groceries or medication
are being consulted by PD and/or their informal caregivers when seeking medical or practical advice
PCN as a liaison towards other healthcare professionals/services
PCN follow up on medication, because of seemingly incorrect medication overviews, by consulting general practitioners or a pharmacist.
In case of swallowing problems, PCN contact speech therapists and dieticians.
When monitoring PD’s nutritional status, PCN appeal to dieticians.
PCN answering questions about procedures and practicalities reimbursements,
supportive tools for PD and its pricing,
the availability of care facilities – which they react upon by making referrals or by trying to inform correctly

8. Different tasks for PCN
Medication
Advising PD & informal caregivers
Preparing
Putting in place
Administering
Medication intake
Checking
Guiding
Supervising
Safeguarding
Formal registration
Administered medication
Administrator medication
Informing PD about proper medication use
Interprofessional consultation
 Questions about
Administration
Finances
Reimbursements
(pricing of) supportive tools
Personal assistance
Housing adaptation
Holiday/leisure activities
Availability care facilities
Nursing care
Washing & bathing
Dressing
Feeding
Toileting
Transferring
Mobility
Consulting for advice
General practitioner
Dietician
Pharmacist
Speech therapist
Arranging appointments
Physiotherapist
Cleaning help
Contacting services regarding
Failing bed
Failing wheelchair
Assisting in daily activities
Referral
Picking up groceries
Picking up medication
Mail
Emptying postal box
Checking for important mail
Explaining content of mail
Opening curtains
Preparing meals
Emptying trashcan
Diabetes educator
Pedicure
Specialist

9. Implications for nursing education and clinical practice
Limitations of study
Less about things going great because surveying ‘problems’
Purposive sampling: no indication experiences region specific, but not examined
Education to be able to act upon PD’s healthcare needs
To be taught necessary skills to provide (specific) care
To be informed about other disciplines
To be supported to make good referrals
Involvement in multidisciplinary network
To share workload and responsibilities
Valuing interprofessional collaboration
Implications for nursing education and clinical practice

10. Conclusion PCN deliver a broad range of nursing care
pursuing optimal health & contributing to PD’s indepency 
enabling PD to keep on living in their own home

11. Thank you! Hannelore Storms Hasselt University, Belgium
Faculty Medicine and Life Sciences