Informal care and diversity explored in interdisciplinary research

Abstract

Introduction: Collaboration between professionals and caregivers is not always effective1,2,3. This can be explained by the fact that caregivers and professionals have different backgrounds and frames of reference4. The Diversity and Informal Care-project of the AUAS elaborates on the differences between various groups when it comes to giving and receiving informal care and its impact on the needs and expectations of caregivers. Two PhD-studies are conducted, in which researchers from the Faculty of Health and of Applied Social Sciences collaborate. Methods: Both researchers conducted a review as a start of their PhD-studies. A systematic review was conducted to examine how professionals experience collaboration with caregivers. The other review, which is a scoping review, focusses on the caregivers’ opinion on the division of care and on the question whether professionals take this opinion into account. During the conference, we will present the findings of the systematic review (submitted) and some preliminary findings of the scoping review (currently being finalized). We will focus on interconnections and striking features. Results: Working in collaboration with caregivers requires professionals to adopt a different way of functioning. Specific attention should be paid to the caregiver, where the focus is now mainly on the care recipient. This is difficult to attain due to different restrictions. Professionals express that they are not confident or qualified to support caregivers4. Responsibilities between professionals and caregivers are sometimes unclear. It is important to assess the cultural context in understanding caregivers. Cultural assumptions cause different experiences, but individual and cultural needs are not always taken into account by professionals5. Discussion: The systematic review revealed different reflections by professionals illustrating the complexity, multifaceted and dynamic interface of formal and informal care. Working in partnership with shared decision-making has not yet been reached4. Conclusion: The urgency to meet the needs of caregivers is high and knowledge about how professionals can support these needs is necessary. The perspectives of professionals and caregivers on collaboration differ and professionals who are not confident limit themselves to only giving basic advise. This makes the collaboration a complex endeavor, which is in need of specific guidelines and training for professionals4. The scoping review revealed that the importance of clear responsibilities is mentioned as facilitator for good collaboration between formal and informal care5. Lessons learned: There should be a dialogue in the interface between professionals and caregivers to eliminate the discrepancies in experiences between them. Support for caregivers should be included more in the curricula of allied health, nursing and social work education. This is in line with the emphasis that policies are placing on informal care structures6. Limitations: The findings might be less applicable to professionals working with care triads with a different cultural background; the included studies mostly did not take this aspect into account4. Suggestions for future research: Diversity of caregivers and professionals should be taken into account, as little knowledge about the diversity component emerged in the research included in the systematic review4. This will be taken into account in the further execution of both PhD-studies. References: 1- Wittenberg, Y, Kwekkeboom, MH, Boer, A de. Bijzondere mantelzorg. Ervaringen van mantelzorgers van mensen met een verstandelijke beperking of psychiatrische problematiek (‘Special informal care. Experiences of informal carers of people with an intellectual disability or psychiatric disorder’). The Hague: The Netherlands Institute for Social Research; 2012. 2-  Boer, A de, Klerk, M. Informele zorg in Nederland. Een literatuurstudie naar mantelzorg en vrijwilligerswerk in de zorg (‘Informal care in The Netherlands. A literature review on informal care and voluntary work’). The Hague: The Netherlands Institute for Social Research; 2013. 3- Rowe, J. Great expectations: a systematic review of the literature on the role of family carers in severe mental illness, and their relationships and engagement with professionals. Journal of Psychiatric and Mental Health Nursing 2012; 19: 70-82. 4- Hengelaar, AH, Hartingsveldt, M van, Wittenberg, Y, Etten-Jamaludin, F. van, Kwekkeboom, R, Satink, T. Exploring the collaboration between formal and informal care from the professional perspective – a thematic synthesis. Health & Social Care in the Community 2016; submitted. 5- Wittenberg, Y, Kwekkeboom, MH, Staaks, J, Verhoeff, AP, Boer, A de. Scoping review about the caregivers’ opinion on the division of care responsibilities and about the question whether professionals take this opinion into account (working title, currently being finalized). 6- Kaljouw, M, Vliet, K. Naar nieuwe zorg en zorgberoepen: de contouren (‘Towards new care and care professions: contours’). The Hague: The National Health Care Institute; 2015.