How best to support carers of hospital inpatients and how CarerHelp resources might best be implemented in clinical practice to address safety and quality of care was a key concern for Associate Professor Collier and her health service counterparts Ms Megan Dundon and Ms Emily Lines in the Division of Aged Care Aged Care Rehabilitation and Palliative Care, Northern Adelaide Local Health Network (NALHN) in South Australia.

Elisha D'onise chronic pain team nurse and a researcher on the study shared her insights and what she’d learned about the needs of inpatient caregivers:  
 

As a nurse in the inpatient setting, I viewed the person admitted to hospital as now under my care and so the caregiver does not need to continue their caregiver role. The care of the person is now the responsibility of the clinicians within the hospital. However, having delved into caregiver interviews, I now recognise most caregivers would most certainly disagree. Another assumption I had made as a nurse is that caregiver stress reduces when people are in hospital because the care and treatment has been transferred to hospital clinicians. Again, having analysed caregiver interviews I have learnt that this is not the case. Many caregivers feel their caregiver role does not stop but changes. The role of the caregiver now may include other skills such as advocating for the person, investigating and gathering information and negotiating between patient, clinicians and services. These changes can be stressful, worrying, and overwhelming and this most definitely applies to the potential and actual changes in the patient and caregiver role. Further sources of stress for caregivers can also come from the changes in their routines. For example attempting to get to early morning doctors rounds, more travel and time out of the house whilst still managing their other commitments. Commonly this is coupled with less opportunities to participate in their usual stress relieving and self-care activities. Changes in their environment commonly leaves caregivers with a sense of feeling lost and not knowing how to get what they need. Even those caregivers who have had previous health service experience expressed in the interviews that they felt pressure and stress when the person they care for admitted to hospital.

Caregivers often feel they need to seek out information from clinicians or other sources, so they are not left feeling 'in the dark' or 'out of the loop' about the person’s condition and care needs. They report at times they feel they are not listened to by hospital staff leading to further frustration. Caregivers want to understand what is going on so they can support the recipient of their care and prepare for future care needs in turn helping to reduce their uncertainties. Many caregivers feel opportunities to speak with clinicians and the medical team are limited and have worries and concerns that are not addressed. At the same time, they are conscious of busy clinicians and can feel they are an extra burden on the clinicians’ already busy schedule.

I have reflected on the handovers we receive as clinicians compared to when care of the client is transferred to those given to caregivers on discharge. Just Imagine what feelings and emotions we would have as clinicians if we did not receive an appropriate handover or documentation about our client. Many caregivers are fearful and nervous about what will happen when the patient goes home. Will they cope with the changes in their caregiver role? Will the patient suffer, or their health worsen if I do something wrong or don’t do something I should? How do I know if something is normal or if it needs attention? How will I get help for the person I am caring for or myself if I need it? By giving caregivers an opportunity to ask these questions they will feel better equipped and less fearful when the client is discharged home and in the future.

In conclusion: caregivers are keen to continue to assist the person in any way they can even whilst they are admitted. This is despite many caregivers describing feelings of being stressed, worried, overwhelmed, lost, frustrated, unheard, burdensome to clinicians and fearful of what the future may hold. Caregivers could be considered a valuable, dedicated, and untapped resource and with extra consideration and support they could be very beneficial to the care, health and wellbeing of the person during admission and after discharge.

Authors:

Elisha D'Onise, Clinical Nurse, Northern Pain Rehab Service.

Megan Dundon, Senior Manager, Northern Adelaide Geriatrics Service 

With contribution from Dr. Aileen Collier, Associate Professor Palliative Care & Aged Care Nursing Division of Aged Care, Rehabilitation and Palliative Care Northern Adelaide Local Health Network & Research Centre for Palliative Care, Death and Dying Flinders University