Responsibility and advocacy
shock
SHOCK
Caregivers reported a sense that they must advocate and even battle for services to achieve adequate care and support in the transition from hospital to home, and yet, they had no power to do so. Navigating the care system is difficult and requires knowledge and confidence. This was particularly pertinent among first-time caregivers.‘There is only as much as I can do to protect my husband.He’s got a right to have a minimum care.Really,we're not asking for much.’(Caregiver,Female,Intervention Group)‘I had to make phone calls and chase around to try and sort things out (for her recovery at home).’(Caregiver,Female,Control Group)Informal caregivers felt that this level of advocacy was time-consuming and created an imbalance in undertaking care activities, thus detracting from giving personal support.‘But while I have to chase up all these things, he’s not getting the best.He needs my attention,you know,to make sure that he’s doing his exercise.’(Caregiver,Female,Intervention Group)Caregivers also expressed their feelings of accountability for supporting independence and recovery and, not surprisingly for some, this induced feelings of stress and anxiety.‘She’s always been very independent,and I just felt very responsible for it.Seems to be quite a lot on my shoulders.’(Caregiver,Male,Intervention Group)‘There was a shock when she fell and broke her hip.It’s a lot to take on.All of a sudden,everything falls to one person,it’s tough.’(Caregiver,Male,Control Group)