Introduction

1. Introduction • There is a fundamental link between patient recovery and family wellbeing. 1, 2 Increasing numbers of patients are benefiting from treatment in intensive care, who return home to be cared for by their families and other care givers. Recognising the caregiver’s needs is essential in order to safeguard the family unit, provide holistic care and ensure effective patient rehabilitation. • There is little research related to the family experience after intensive care, but evidence suggests they go through a wide range of both positive and negative events and emotions. A literature review was completed to investigate original research into the caregiver experience at home. The results are illustrated using quotes from a caregiver. Relationships and Lifestyles Psychological Physical Implications for practice • Changes in family roles and support. 8, 9 • Altered relationships including positive and negative effects. 8, 9, 13 • Curtailment of social life. 13 • Job loss and financial hardship. 8, 15 • Taking on new roles resulting in overload. 8, 14 • Insomnia and exhaustion. 12, 13 • Fear of falling asleep (a manifestation of hypervigilance). 5, 13 • Loss of appetite and weight loss. 12, 14 • Muscle spasms, back pain, neck problems. 14 • Gastritis. 14 • Post traumatic stress. 2,3,4, 5 • Depression. 6, 7 • Hypervigilance. 8, 9 • Anxiety. 6, 10 • Re-living the experience. 2 • Anger and guilt. 8, 9 • Personal growth and mastery of new skills. 11 AcknowledgementsMelanie Gager, Intensive Care Unit, Royal Berkshire Hospital NHS Foundation Trust and the RBH ICU Support Network for their advice and support. The presenters are grateful for the financial assistance provided by the BACCN Southern Region, the University of Surrey, and Frimley Park Hospital NHS Foundation Trust to attend this conference. References 1 Sharples, N. (2007) 'Relationship, helping and communication skills', in Brooker, C. and Waugh, A. (eds.) Foundations of nursing practice. Edinburgh: Elsevier-Mosby. 2 Griffiths, R.D and Jones, C. and. (2007) 'Seven lessons from 20 years of follow-up of intensive care unit survivors', Current Opinion in Critical Care, 13(5), pp. 508-513. 3 Needham, D.M. et al. (2012) 'Improving long-term outcomes after discharge from intensive care unit: report from a stakeholders' conference', Critical Care Medicine, 40(2), pp. 502-509. 4 Azoulay, E. et al. (2005) 'Risk of post-traumatic stress symptoms in family members of intensive care unit patients', American Journal of Respiratory and Critical Care Medicine, 171(9), pp. 987-994. 5 Jones, C., et al. (2004) 'Post-traumatic stress disorder-related symptoms in relatives of patients following intensive care', Intensive Care Medicine, 30(3), pp. 456-60. 6 Choi, J. et al. (2012) 'Patterns of depressive symptoms in caregivers of mechanically ventilated critically ill adults from intensive care unit admission to 2 months post intensive care unit discharge: A pilot study’, Critical Care Medicine, 40(5), pp. 1546-553. 7Cameron, J.I. et al. (2006) ‘Well-being in informal caregivers of survivors of acute respiratory distress syndrome’, Critical Care Medicine, 34(1), pp. 81-6. 8 Cox, C. et al. (2009) 'Surviving critical illness: acute respiratory distress syndrome as experienced by patients and their caregivers', Critical Care Medicine, 37(10), pp. 2702-2708. 9 Söderström, I.-M.K.et al. (2009) 'Family adaptation in relation to a family member's stay in ICU', Intensive and Critical Care Nursing, 25(5), pp. 250-257. 10 Jones, C. and Griffiths, R.D. (2007) 'Patient and caregiver counselling after the intensive care unit: what are the needs and how should they be met?', Current Opinion in Critical Care, 13(5), pp. 503-507. 11 Foster, M. and Chaboyer, W. (2003) 'Family carers of ICU survivors: a survey of the burden they experience', Scandinavian Journal of Caring Sciences, 17(3), pp. 205-214. 12 Choi, J. et al. (2011) 'Caregivers of the chronically critically ill after discharge from the intensive care unit: six months' experience', American Journal of Critical Care, 20(1), pp. 12-23. 13 Young, E. et al. (2005) 'Returning home after intensive care: a comparison of symptoms of anxiety and depression in ICU and elective cardiac surgery patients and their relatives', Intensive Care Medicine, 31(1), pp. 86-91. 14 Johansson, I., Fridlund, B. and Hildingh, C. (2004) 'Coping strategies of relatives when an adult next-of-kin is recovering at home following critical illness', Intensive and Critical Care Nursing, 20(5), pp. 281-291. 15 Douglas, S.et al. (2010) 'Depression among white and nonwhite caregivers of the chronically critically ill', Journal of Critical Care, 25(2), pp. 364.e11-9. 16 Douglas, S.L., et al. (2005) 'Impact of a disease management program upon caregivers of chronically critically ill patients', Chest, 128(6), pp. 3925-3936. 17Harvey, M.A. (2012) 'The truth about consequences—post-intensive care syndrome in intensive care unit survivors and their families', Critical Care Medicine, 40(8), pp. 2506-2507. 18 Davidson, J., Jones, C. and Bienvenu, O.J. (2012) 'Family response to critical illness: posttraumatic care syndrome-family', Critical Care Medicine, 40(2), pp. 618-624.  19 National Institute for Health and Clinical Excellence (2009) Clinical Guidelines 83: rehabilitation after critical illness.20 Douglas, S.L., Daly, B.J., Kelley, C.G., O’Toole, E. and Montenegro, H. (2005) 'Impact of a disease management program upon caregivers of chronically critically ill patients', Chest, 128(6), pp. 3925-3936. Life at home after intensive care: the family caregiver’s experience BACCN National Conference 16th - 17th September 2013 Sarah Holling, BSc (Hons), MA, final year BSc (Hons) Adult Nursing Student sarah.holling@fph-tr.nhs.uk Cathy Derham, BA (Hons), PG Dip, MSc, RGN, Director of Studies c.derham@surrey.ac.ukUniversity of Surrey, Faculty of Health and Medical Sciences, School of Health and Social Care “Chris was in intensive care for six weeks, but coming home was the most terrifying bit. I felt jubilation ... then it was ... what support is there? There was no medical person any more to run down the corridor to. I was scared. There was no help at home.The emotional impact has surprised us. It has been a long and bumpy road”. • A new syndrome, Post Intensive Care Syndrome – Family (PICS-F)3, suggests caregivers experience psychological problems after a patient is discharged from hospital. • However, the literature review proposes the caregiver experience at home is more complex than suggested by PICS-F and that the syndrome should be widened. • The impact upon caregivers can be both positive and negative affecting psychological and physical wellbeing, family dynamics, friendships, and lifestyles. • Post ICU caregivers are a largely unrecognised group 20, and receive limited, if any, support after hospital discharge. • Few studies have examined the experience. Further research is needed into whether the caregiver’s experience impacts upon patient rehabilitation. 7 Findings “It leaves a permanent scar”. “I talk about it nearly every day with my husband”. “I can remember everything”. “The shadow of the experience follows me around”. “Our new family motto is don’t sweat the small stuff”. “When Chris first came home, I didn’t sleep. I was in alert mode, shining my torch on him to check he was breathing. I texted my husband to come down stairs to listen to his breathing in the middle of the night”. “I don’t think I will ever sleep well again”. “I lost weight at the time and eating became mechanical”. “There was no ‘give’ in my old job even though I had been there for 16 years. I offered to work mornings, but even then I think I would have panicked if I wasn’t home with Chris”. “In the end I had to leave my job. It had a huge impact financially. We will be paying it off for the rest of my life ... but it was worth it”. • Intensive care puts a strain on families. 19 They need open-ended support, and there is potential to redefine the interpretation of critical care without walls. • Nurse-led clinics may reduce the progression of mild depression to more severe depression, but other interventions remain unproven. 5, 12, 16 • Nurses have a responsibility to provide holistic care. ICU teams need to move beyond ‘silo thinking’ to embrace a more multidisciplinary approach to care after discharge. 17, 18 • Research is needed to find out if improving the family caregiver experience impacts upon the support needed for patients and improves their rehabilitation.