The Post-Caring Experience of Former Family Carers – Evidence from Ireland Breen, Cronin, Hynes, McCallion & McCar

1. The Post-Caring Experience of Former Family Carers – Evidence from Ireland Breen, Cronin, Hynes, McCallion & McCarron

2. Gaps in understanding Dearth of research focusing on post-caring, especially post-death First Irish study on post-caring Irish post-caring policy & services context -6 weeks Carers’ Allowance/Benefit (i.e.€212/€213 per wk) -No specific health or social care policies in place Research Q: How do family carers perceive their own needs in the post-caring period? School of Nursing and Midwifery 24 D'Olier Street Dublin 2

3. Methodology Convenience sampling technique Recruitment via Carers Association & Information Packs 26 semi-structured interviews & 1 focus group (N=14) NVivo 8 - analysis from audio Template analysis (King et al, 2002; Crabtree & Miller, 1999) School of Nursing and Midwifery 24 D'Olier Street Dublin 2

4. Participant Details Gender: 7 males, 19 females Age (range 33 to 81 yrs; mode: 58 yrs; median: 56 yrs) Who caring for? - Parent (12) - Spouse (10) - Other relative (4) Length of time caring (range 6 months to 27 yrs; mode: 5 yrs; median: 5 yrs) School of Nursing and Midwifery 24 D'Olier Street Dublin 2

5. Primary medical condition of Caree School of Nursing and Midwifery 24 D'Olier Street Dublin 2

6. Post-caring transition School of Nursing and Midwifery 24 D'Olier Street Dublin 2

7. Time since transition Range: 3 months to 6 yrs Mode: 1 yr 4 months Median: 1 yr 6 months School of Nursing and Midwifery 24 D'Olier Street Dublin 2

8. Emptiness & Loss Emptiness of house Cut out of the system Loss of special relationship Enforced retirement without benefits Not prepared for post-caring Pre-caring world is gone (friends/work) School of Nursing and Midwifery 24 D'Olier Street Dublin 2

9. Emotional Reactions Anger: - Because of need to fight for services Guilt -Sudden death at home -Worrying about financial issues Anxiety – still feeling ‘on duty’/ inability to sleep Sadness/loneliness (esp at night) School of Nursing and Midwifery 24 D'Olier Street Dublin 2

10. Family conflict Especially between siblings Property/legal issues Lack of understanding of post-caring needs Redressing neglect of family members during caring School of Nursing and Midwifery 24 D'Olier Street Dublin 2

11. Post-caring support Role of Carers’ support groups Supportive families/friends/neighbours Health services: –removal of equipment –community nurses/G.P. visits – own initiative – no statutory health or social care services School of Nursing and Midwifery 24 D'Olier Street Dublin 2

12. Taking care of self Keeping busy Get out of house Proactive – have to do it themselves Giving back – stop focusing on self Comfort from belief in after-life School of Nursing and Midwifery 24 D'Olier Street Dublin 2

13. World-less Pre-caring world Supports needed to facilitate move to new world Caring world New world FormerCarers caught between worlds School of Nursing and Midwifery 24 D'Olier Street Dublin 2

14. Post-Carers’ Needs Preparation for post-caring Counselling Career advice & dedicated return-to-work services Home visits Training sessions on conflict resolution Financial support for longer than 6 weeks Dedicated post-caring support groups & telephone helplines School of Nursing and Midwifery 24 D'Olier Street Dublin 2

15. Link to theory Fits with ‘Carer Career’ & Stage Models (Nolan et al, 2003; Brown & Stetz, 1999;Aneshensel et al, 1995; Lindgren, 1993) Post-Nursing Home Placement stages (Davies & Nolan, 2003; 2004; 2006) Post-death stages (Larkin, 2009) School of Nursing and Midwifery 24 D'Olier Street Dublin 2

16. Acknowledgements Funders: Irish Research Council for Humanities & Social Sciences (IRCHSS) and Care Alliance Ireland Recruitment: The Carers Association & 16 centre managers nationwide 40 Former Family Carers School of Nursing and Midwifery 24 D'Olier Street Dublin 2