Interview with Professor Lorna Awo Renner

Categories: Education, Featured, and Opinion.

Interview with Professor LornaAwoRenner, Consultant Paediatric Oncologist,Korle BuTHospital, Accra,Ghana.

Thank you for talking with me today Professor Renner and sharing some of your insights into children’s palliative care in Ghana and how you think the new #ChilPalCare Education and Training Programme will help its development.

So to begin with, what is your experience of palliative care within paediatric oncology?

Paediatric Oncology goes hand in hand with paediatric palliative care. Many children present with advanced disease and you have to embrace the outcome of palliative care, it’s part and parcel. I tend to refer to it more as supportive care as people don’t like the word palliative.   They need all forms of support and care from diagnosis throughout the continuum of care, it’s not just about end-of-life care at all.

Is the biggest need for palliative care in Ghana for children with cancer?

We have children with many other diseases who require palliative care, such as chronic renal disease, but the area of children’s cancer is more defined. You can tell when palliative care is needed.  Although there are many children in need of palliative care with heart disease, for example, they are dotted in various hospitals. There is not a single main centre so it’s hard to keep track of them.  Often palliative care need is identified quite late in a child with cancer as treatment is so focussed on cure, that’s why I tend to call it supportive care.

How do families in Ghana cope with caring for a dying child?

I think here in Ghana families cope by placing a lot of emphasis on religion.  They rely a lot on their religious leader to help them. In Ghanaian society everything is built around spirituality.  Every morning there will be someone going round the wards praying and preaching, even going  to the outpatients department.  There are also hospital chaplains.

How did you establish children’s palliative care here at Korle Bu Hospital?

I worked with adult palliative care colleagues and we organised some palliative care workshops for teams from all the regions in Ghana in 2006 and then we set up a small palliative care service here in Korle Bu Hospital.  It was mainly for adults, because in paediatrics we tend to care for children in our own setting, integrated into our care rather than a special service.   We’ve had some support from adult palliative care professionals, but it appeared they weren’t so comfortable dealing with children.

What is your model of CPC?

We provide home visits from the beginning to the end – we don’t drop families.  We follow them through even after their child’s death, attending funerals when we can.  It’s an outreach service, so my nurses do home visits.  They usually don’t go beyond about 70km, so that the journey will take no more than about two hours each way.  They go from Accra to Eastern, Central and Volta Region of Ghana.  We also communicate with families by phone.   We had some palliative care nurses for adults who were trained in Uganda and they were really holding the fort for adult palliative care, but we don’t have any trained specialist children’s palliative care nurses.

How do you think this #ChilPalCare education & training project in Ghana will help?

There’s a real need to build capacity in CPC nursing. You need to have a calling and special skills to nurse in children’s palliative care. My nurses have learned on the job really, they’ve not had any formal training in palliative care so we hope this project will help with that.  There’s a big gap.   We only have one palliative care trained paediatrician in Ghana, trained in South Africa and based in Kumasi, so she has a lot of work to do.  There’s no network as such, it can be very isolating, so the Community of Practice you are setting up will be really important.

What do you think would the important topics to cover in our training programme?

It needs to be fairly basic, covering everything: communication with children, pain management, symptom control, social, emotional, psychological and spiritual support.  Maybe also a short session on practical ethics – knowing where to draw the line, thinking about quality of life, how to go about decision-making and thinking about best use of resources.   We developed some of this when we ran the workshops, so a lot of this can be brought in.

As part of the project we will be working with the Ghana Colleges of Nursing & Midwifery, Physicians & Surgeons, and Pharmacists to develop their curricula.   How do you think this might help build capacity for CPC in Ghana?

The Ghana College of Physicians and Surgeons has an adult palliative care course aimed at general practitioners.  There isn’t a separate paediatric palliative care training programme, but now that we have a CPC trained doctor she could work with the project to develop a new programme as long as she becomes a fellow of the GCPS.  It’s important to do this for children with all conditions, not just cancer.

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