Understanding Open Access and Collaboration in the Not-for-Profit Sector

This text discusses the experiences of open access within the not-for-profit sector, focusing on the work of Care Alliance Ireland in supporting family carers. It highlights the challenges and benefits of collaboration between not-for-profit organizations, academia, and researchers, emphasizing the mutual shared goals and the importance of inclusive research practices. The content also sheds light on the impact of caring for family members on health and the need for resources and support for family carers in Ireland.

• Open Access
• Collaboration
• Not-for-Profit Sector
• Family Carers
• Research

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1. Experiences of Open Access in the not-for- profit sector Zoe Hughes Policy and Research Officer Care Alliance Ireland Open Access Week 23rd October 2015

2. Care Alliance Ireland Umbrella Organisation- 100 members Established in 1995 Focus on macro advocacy for Family Carers and those providing support to them Research Policy work Representation at State level Communication Sharing of resources National Carers Week

3. Family Caring in Ireland Family Carer: someone who provides regular unpaid personal help for a friend or family member, with a long term illness, health problem or disability. Census 2011 187,000 Family Carers in Ireland 4,228 under 14 Provide over 6 million hours of care per week- upwards of 4billion worth of care every year

4. Family Carers & Health Less likely to report themselves in good health High levels of stress, emotional strain, social isolation (Care Alliance 2008; Carers Association & Irish College of Psychiatrists, 2009) High blood pressure, tiredness, back problems, arthritis (Carer Alliance Ireland, 2009) More likely to binge drink, smoke, etc (Hoffman, G.J. & Mendez-Luck, 2011)

5. Open For Collaboration Not-for- profit Not- For- Profit The Academia Researched

6. Not-For-Profit + Not-For-Profit Benefits Challenges Mutual shared goal- USUALLY Understanding of funding concerns etc. Different angles on same information Competition- healthy & unhealthy Chasing funding can become overwhelming Recent scandals

7. Not-For-Profit + Academia Benefits Challenges Access to resources Opportunity to set/ impact agenda for research Government like it/ may carry more weight Ivory tower still exists in some sectors Publish or perish NFP seen as gatekeepers and providers of subjects

8. Not-For-Profit + The Researched Benefits Challenges Inclusive research- best practice Less paternalistic Grounded Time-intensive Those being researched have massive commitments

9. Care Alliance & Open Access Ensure all our research documents are freely available Budget for research to be added to OA journals Encourage comment from Family Carers themselves- research has to be accessible "Plain English" research reports

10. Some statistics Website reach: 58,000 downloads (2014) 16,715 visitors (2014) Over 3000 downloads of Family Caring in Ireland overview report (2013-2014) ~500 downloads in 5 days of Defining Carers discussion paper

11. Thank you Contact Details zoe@carealliance.ie www.carealliance.ie @CareAllianceIRL