Four novel research studies investigating patient experience were presented as part of Counties Manukau Health’s Research Week.
Research Week, organised by the Ko Awatea Research and Evaluation Office, is being held this week to share and promote research at Counties Manukau Health. The event includes workshops, poster displays and themed sessions that focus on key research priorities.
The patient experience session covered investigations into patients’ experiences of rheumatic fever (RF), renal replacement therapy, short-term loan equipment for disability, and a healthcare assistant model for social work.
Dr Briar Peat, who spoke on recurrent rheumatic fever (RRF) and rheumatic heart disease (RHD), presented a study of the experiences of Māori and Pacific whānau living with these conditions. In contrast to most of the developed world, the incidence of rheumatic fever remains high in New Zealand due to persistent social and ethnic inequities. Māori and Pacific people have the highest rates.
The study found that failures in the health system contribute to the development of RRF and RHD. These include missed or delayed diagnosis, access barriers, failure to recognise RF and RHD as chronic conditions, a mismatch between health service assumptions and the real living contexts of whānau, and the stigma and guilt created by negative publicity about RF and RHD, Dr Peat said.
Racism, too, continues to be a problem. “Hospital is sometimes a culturally unsafe environment. Some patients reported being treated differently from other patients, being treated as dirty because they had rheumatic fever, and being called a ‘coconut’,” said Dr Peat.
Recommendations to address the problem include flexible service delivery models, culturally appropriate care, seamless national patient management, age-appropriate resources and services, and recognising RF and RHD as chronic conditions in adolescence.
Marie Chester of Ko Awatea’s Building Capability Unit addressed the ‘great divide’ between discharge from hospital and adapting to life at home for patients who have disabilities. Her research involved interviews with eight patients and six occupational therapists with experience of providing, receiving and using short-term loan equipment (STLE), such as walking frames.
The STLE system works when there is openness between the patient and therapist and to possibilities for managing disability; when therapists and patients have confidence in each other, in equipment and in the flexibility of the system; and when there is time to build a rapport and solve problems, Ms Chester told attendees at the session.
Annelize de Wet, associate director allied health social work, presented research into a model for health social work assistants. Although social workers held myths and concerns about working with assistants, Ms de Wet’s research showed that it can improve cultural engagement and help to build connections and understanding with families.
Pre-dialysis clinical nurse specialist Nogi Eiao rounded off the session by examining the values and beliefs that influence Pacific people in their decision-making about renal replacement therapy. Although Pacific people make up only seven per cent of New Zealand’s population, they account for 25 per cent of people on dialysis. Key recommendations from Ms Eiao’s work were to improve health professionals’ understanding of Pacific people’s needs, acknowledge Pacific people’s values and beliefs, capture the stories of patients and their families, and to ensure a seamless care journey.