Understanding the Support Needs of People With Long COVID: A Qualitative Study in Aotearoa New Zealand

INTRODUCTION: Long COVID is a multi-system condition that affects an increasing number of individuals. Little is known about the support needs of people living with long COVID in Aotearoa New Zealand. This study aimed to explore the lived experiences and healthcare access challenges of people with long COVID to better inform service design. METHODS: Co-design methodology was used, informed by the Stanford Design Thinking process and knowledge mobilisation approaches. Participants were recruited via snowballing, through professional networks and support groups. People with lived experience of long COVID were invited to participate in a 2-h workshop, facilitated by researchers, conducted between March and September 2024. Participants were asked to create a depiction of their experience of long COVID and describe their creation to the group; descriptions were audio-recorded, transcribed and thematically analysed. The inclusion of people with lived experience of long COVID as co-investigators ensured that the study was designed and conducted to forefront their knowledge and experience. RESULTS: Eight workshops were conducted, including 30 participants, between March and August 2024. Of these, 25 (83%) were female; of the 25 who provided their age, most were aged 45 to 64 years (n = 18, 72%), four (16%) were aged 25 to 44 years and three (12%) aged 65 years or older. Five key themes emerged: (i) lack of assistance; (ii) systemic barriers; (iii) absence of long COVID clinics; (iv) financial strain; and (v) low quality of care. A sixth theme identified personal coping strategies. CONCLUSIONS: Individuals with long COVID in Aotearoa New Zealand face major barriers to care, including inadequate services, financial hardship, and fragmented healthcare pathways. Findings support improved pathways and primary health care education in long COVID. A person-centred, coordinated, and accessible model of care is needed. LIVED EXPERIENCE OR PUBLIC CONTRIBUTION: The study was designed with two people with lived experience of long COVID included as co-investigators, and a further one on the Advisory Board. All participants had lived experience of long COVID.