Supporting better healthcare for immunocompromised youth

Adolescents and young adults have been hard hit by the COVID-19 pandemic. It’s severely disrupted education, thwarted important socialisation opportunities and life milestone celebrations, and employment opportunities have evaporated as a consequence of it.

PhD student Kostas HatzikiriakidisIn addition to these hardships, young people who are immunocompromised have also faced the very real threats that COVID-19 poses to their physical health, and even their lives.

PhD student Kostas Hatzikiriakidis (based within our Health and Social Care Unit), alongside senior occupational therapist Simone West (based within Alfred Health’s National Paediatric Lung-Heart Transplant Service), and their colleagues, undertook interviews with eleven young Victorians living with immunosuppression following lung transplantation, to find out more about their experiences during the pandemic. The results were published in Paediatric Transplantation recently.

“I’m very passionate about ensuring health systems and services are inclusive of people with disability and their carers. One of the best ways to ensure this is to find out from those people directly what they need, what’s working for them and what isn’t. Once we know that, we can build that into future services, or better still, co-design health service delivery with them,” he says.

“Qualitative research methods offer the perfect way to get that information in a robust, standardised way that can be used as evidence to support future policy and practice in this space.”

Kostas, Simone, and the project leads Dr Miranda Paraskeva and Dr Darshini Ayton, recruited lung transplant recipients from the Alfred Health Lung Transplant Service,  Australia’s largest service which provides lung transplantation to residents of Victoria, Tasmania and South Australia who are living with end-stage respiratory failure. All participants were aged 16-29 years old at the time of interview, and all received their transplants at age 25 years or younger.

The interviews were conducted between June and December 2020, against the backdrop of Victoria’s second lockdown. Ten participants lived in metropolitan Melbourne, where the social distancing restrictions were the most severe, and one lived in regional Victoria, an area subjected to less severe restrictions. By that December, Australia had clocked 28,000 national cases of COVID-19, with young people aged 15–24 years accounting for 15 per cent of the infected population. No vaccines were yet available.

The researchers found four common themes among the interviews. The first was occupational deprivation and the lack of access to activities and tasks that provide structure, meaning, purpose and pleasure. Many participants modified or abandoned career aspirations as a result of study and employment disruption. Some were disappointed by lack of access to social interaction and gym facilities. Others used the deprivation as a catalyst to explore new activities, such as artistic pursuits.

The second theme was resilience and acceptance of the restrictions. Many viewed their previous experiences of isolation due to their medical conditions as a form of preparation for social distancing during the pandemic. A number of them felt that the pandemic had brought the wider community closer to their own lived experiences:

In this COVID time, everyone is going through a shit one; everyone is going through a tough time at the moment. If you are normal, if you are sane in mind, you should be going through a tough time and it should be pretty challenging.

The third theme was infection control in the context of compromised immunity. All participants recognised their heightened risk and modified their behaviours accordingly – scheduling medical appointments when clinics are quieter, wearing masks beyond what was mandated, and relying on family to procure food and other essential items.

The fourth and final theme that emerged was around telehealth. Telehealth services boomed during the pandemic, with the Australian government announcing rebates for phone and video consultations that had previously not been available to doctors. While there was a general acceptance of telehealth as an important infection control tool, there were mixed feelings as to its value compared with face-to-face healthcare. Some cited enjoying the flexibility and convenience of calls, while others felt concerned around sub-optimal care.

Kostas says, “We uncovered a lot of variation in experiences and attitudes, but also some similarities. What I’d take from this is the importance of including an active voice of youth when designing health services, and offering flexibility and personalisation of care wherever possible. Consistency of clinicians is also integral to foster trusting relationships through difficult times, and it’s important to leverage technology to drive health literacy and provide care and support.”

Dr Paraskeva found the results enlightening: “It was surprising to me, as a clinician, that not all the participants preferred telehealth and that a number felt that the loss of the human-human interaction impacted on their quality of care. This highlights the importance of including young people in the design of health services being built to serve them and that not all young people have free access to safe, private spaces at home where they can participate in telehealth.”

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