New moral responsibilities assigned to family care? Finding moral balance in changing roles between professionals and family carers

Family is an important stakeholder in chronic care. For a long time they have, however, been structurally undervalued in healthcare. Their care activities were not constructively attuned with professionals. Currently, a new wind is blowing and the role of family care is revalued (e.g. the participation society). Within the current area of post-individualism, emancipation and transitions in healthcare, professional care activities are reduced and family is expected to fill this gap. Although new health policy norms have become dominant, much is still unknown about the actual moral expectations, the actual moral challenges of professionals, family and patients and how to deal with these. It remains unclear what kind of moral responsibilities are expected from family members by the new policy norms and how these turn out in practice. This gap of knowledge regarding the normative expectations, moral challenges and how to deal with tensions hinders both professional and family caregivers in providing ‘good’ care for the patient. This leads to conflicts and concerns about the negligence or maltreatment of patients, stress and overburdening of family carers, and ambiguity among professionals. Up till now the ethical discussion on care responsibilities of the family has not been explicitly addressed. Nor is it clear what can be expected from all stakeholders regarding care responsibilities and how to find a good moral balance between the various stakeholders involved. The purpose of this study is therefore: 1) to gain insight in the way professionals, patients and family carers deal with (new) moral challenges regarding their specific care responsibilities and; 2) to support the development of a good moral balance in which the division of care responsibilities can be considered as realistic and just (mature care), and in which every participant is recognized and acknowledged in the various moral pulls that concrete situations demands. For this aim we will critically analyse the care responsibilities within the changing context and search for ways to find moral balance in the context of chronic care for patients with Acquired Brain Injury (ABI). ABI causes divers and often hidden disabilities. It can develop quite sudden and requires enormous adjustments in previously known roles and relations of the patient. As a consequence, this injury has a major impact on the moral relationships within families and the caring responsibilities within the family. Furthermore, ABI patients and family members become suddenly dependent on professionals and need to find a new balance in care responsibilities. In this study a normative-empirical approach will be used. This methodology uses a cyclical model in which empirical and normative analysis are entwined. Data will be collected among all stakeholders (patients, family and professionals) in order to gain an understanding of their various perspectives. Case study and moral case deliberation (dilemma and Socratic methods) will be used as research methods to gather empirical data and jointly develop normative guidelines for reaching a good moral balance among caregivers and patient. On that basis a normative framework for ‘good’ family care is developed and translated into a moral compass and a professional teaching module to support professionals in sharing and balancing care responsibilities. The moral compass is both a digital/electronic and paper booklet in which the moral challenges regarding the responsibilities are processed. It offers both a normative and a process support for professional and family carers. The teaching module includes the summary of the moral challenges and the processing of them via both moral case deliberation and the moral compass. Both moral compass and teaching module will be piloted at the end of this project. A Community of Practice (CoP) is organized to create a moral learning platform among a broad group of stakeholders, including higher education teachers and students, and to foster participation and ownership of the normative framework, moral compass and teaching module. This study can potentially achieve an enduring social impact for a wide audience of stakeholders, involving them in a process of joint moral learning.