Zorgcoöperaties: een wetenschappelijke verkenning vanuit drie perspectieven

ABSTRACT Care cooperatives: Experiences from three perspectives Dutch civil society is changing: the costs of healthcare and welfare are on the rise while, at the same time, government spending on these sectors is decreasing. Especially in rural areas, many citizens are now confronted with a decline in the supply of care and welfare facilities. Some citizens in these rural areas have taken matters into their own hands and are arranging their own care and welfare services via healthcare and welfare cooperatives (hereafter: “care cooperatives”). This development is potentially of high relevance to the government, which is promoting increased personal participation in the healthcare and welfare sectors in order to reduce public spending in these areas. It is also important for citizens who wish to participate in organizing their own care and for the healthcare and welfare suppliers who may be able to improve their services by incorporating the new knowledge gained by the care cooperatives. The aim of this study is to gain insight into the functioning of care cooperatives as a specific form of citizens’ initiative. This short exploratory study is designed to answer the following research question: What are the experiences of care recipients, professional and voluntary caregivers and initiators of care cooperatives with respect to care cooperatives? To answer this research question, we conducted a case study involving three care cooperatives in the Netherlands. We interviewed three different groups of stakeholders, namely care recipients, caregivers and the initiators of these care cooperatives. During the study, the researchers were accompanied by a team of experts from the various fields of practice. The results of the study were discussed with this team and during an expert meeting. This study contributes to our knowledge of care cooperatives because to date, only a few studies have been conducted in relation to the initiators of care cooperatives, none of which were scientifically based or included the perspectives of care recipients and caregivers. The interviewed care recipients were elderly community members who receive healthcare or welfare services from a care cooperative. They were very satisfied with the limited number of caregivers taking care of them (no more than five caregivers in total). They were also satisfied with the frequency and flexibility with which the caregivers visited them. Generally, care recipients knew which caregiver would come at which time. The caregivers also offered flexibility in the timing of their visits and the care recipients were able to reschedule appointments if necessary. The research shows that care recipients were very satisfied with the way care cooperatives provide care. This method of providing care made it possible for care recipients to continue living their own lives and gave them the opportunity to maintain control over their own lives. Care cooperatives managed to provide person-centred care, which translates as care in which the recipient is the focal point of attention. Recipients play an active role, are able to maintain their own identity and control of their own lives, and remain self-reliant, sometimes with help from family or friends. Most caregivers lived in the villages covered by the working area of the care cooperative. However, the scope of their work varied. While some caregivers worked as volunteers by helping at a day care facility for elderly people, other caregivers received remuneration and the scope of their work included nursing and taking care of elderly people living independently in their own homes. The reasons given by caregivers for choosing to work for the care cooperative also differed. Some caregivers mentioned social benefits and the opportunity to contribute to the quality of life in the village. Others mentioned benefits at the individual level and their enjoyment of working within a trusted environment. The manner in which care cooperatives provide care corresponds to the way that caregivers want to provide care to care recipients. For example, the number of clients was limited and caregivers appreciated working in small self-managing teams that provide them with a high degree of autonomy in their work. However, it was found that working for a care cooperative also has drawbacks. For example, it is not possible to offer caregivers a contract with fixed work hours and the number of hours that they can work is often not sufficient to provide the principal income of their family. Furthermore, working in one’s own village with a high degree of autonomy can also lead to a blurring of the boundary between work and personal life. Caregivers sometimes reported receiving after-hours calls from care recipients and/or thinking about the situation of the care recipients when they were at home. Initiators had varying motivations for setting up a care cooperative. Often, they reported negative personal experiences with regular forms of care. One initiator was motivated by his own professional experience of working in healthcare. Some positive and negative experiences were mentioned in earlier non-scientific research. In order to establish and maintain a care cooperative, a broad social consensus is crucial. It is important that the care cooperative begins its activities quickly so that villagers can see that the care cooperative is active. Initiators also stressed the importance of the organizational structure. They advised establishing a structure in which the members are able to exert a significant influence on the policies of the care cooperative. One new negative aspect found in this study was the problem of continuity. The initiators of care cooperatives need to find successors in their own village who are as passionate about the care cooperative as they are in order to ensure the continued existence of the care cooperative. Another negative aspect was the amount of regulation that care cooperatives must take into account. Finally, the unwillingness and/or impossibility of organizations and municipalities to cooperate with the care cooperative was a further negative aspect. At the same time, when these organizations and municipalities did cooperate, this could act as a positive experience for the establishment and continuation of a care cooperative. This exploratory study is the first study on care cooperatives in the Netherlands that includes all three of these perspectives. It provides many new findings, particularly with regard to the perspectives of care recipients and caregivers. SAMENVATTING Zorgcooperaties: Ervaringen vanuit drie perspectieven Dit onderzoek geeft een eerste inzicht in de ervaringen van zorgontvangers, zorgverleners en initiatiefnemers met de oprichting en voortzetting van zorgcooperaties. Van drie zorgcooperaties zijn zorgvragers, zorgverleners en initiatiefnemers geinterviewd over hun positieve en negatieve ervaringen met zorgcooperaties en over hun ervaringen met reguliere zorgorganisaties. Het doel is een bijdrage te leveren aan kennisontwikkeling over het functioneren van zorgcooperaties. De ondervraagde zorgontvangers zijn erg tevreden over de ontvangen ondersteuning en zorg: het contact met zorgverleners is goed en er zijn veel mogelijkheden om de eigen regie over het leven te behouden. Zorgverleners vinden het prettig om voor een zorgcooperatie te werken, vooral vanwege de grote zelfstandigheid en omdat zij bij kunnen dragen aan de zelfredzaamheid van de mensen voor wie zij zorgen. Het werken voor een zorgcooperatie heeft echter ook een keerzijde, namelijk dat zorgverleners vaak niet voldoende (vaste) uren kunnen werken en er soms te weinig scheiding is tussen prive en werk. Initiatiefnemers richten een zorgcooperatie op omdat zij er, vanuit persoonlijke of professionele ervaringen, van overtuigd zijn dat het beter kan: vooral kleinschaliger met meer aandacht voor de menselijke maat. Draagvlak in het dorp is cruciaal voor de oprichting en voortzetting van een zorgcooperatie.