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

Background: Given the worldwide evolution to deinstitutionalize care for people with a disability (PD), the importance of having care services, for instance as offered by primary care nurses (PCN), to deliver necessary care to PD can only be emphasized. European data (from 2014) show a relatively high percentage of PD in Belgium (16.2%) using home care services provided by primary health care providers (PCN, general practitioners…). Moreover, satisfaction levels regarding these services are among the highest in Europe. The objective of this research was to gain insight into the needs of PD regarding nursing care, based on PCN’s experiences. Methods: Between September and December 2015, a questionnaire – drawn up by a multidisciplinary team (4 general practitioners and 20 PCN) – was distributed electronically to 1547 PCN working in primary care in the Belgian region Limburg. Open-ended questions of this questionnaire were analyzed using techniques developed for qualitative data analysis. PCN were asked to report about (1) mental and behavioural problems, (2) medication policy, (3) swallowing problems, (4) monitoring of nutritional status and (5) any other needs arising in the care for PD. Results: Comments of 588 PCN were generated (response rate of 38%). Besides the (routine) tasks of PCN, the impact of PD’s and informal caregivers’ behaviour on PCN’s working environment were mentioned, particularly regarding medication policy, swallowing problems and nutrional status monitoring. PCN’s collaboration with PD and their informal caregivers is often reported about in relation to respectively PD’s limited ability to communicate or to understand PCN and informal caregivers behaving in a counteracting way, not following through PCN’s advice. Additionally, PCN report about consulting and activating other healthcare professionals in the interest of PD’s. Overall, PCN mentioned tasks in all facets of PD’s lives: from the expected nursing care and far beyond. Conclusions: Besides providing nursing care, PCN are also helping with different tasks related to daily living. This “beyond standard” - care enhances the likelihood of PD to keep on living in their homes for a longer period of time. PCN seem to play a crucial role in activating other healthcare professionals to meet the healthcare needs of PD. More extensive research should be carried out to gain insight in healthcare needs of PD and the challenges PCN come across in their care for this population. Findings can be used to align pre-qualification training and education of (future) PCN with the (unmet) needs of PD.