Young people with chronic illness find health system doesn’t meet their needs – Otago study

New Zealand's adult-centred health system appears ill-equipped to meet the needs of chronically sick young people, a University of Otago study has found.

Dr Judith Sligo

Lead author Dr Judith Sligo, of the Department of Preventive and Social Medicine, says young people are a largely invisible group in the health system and their health care needs differ from those of children or adults.

“Young adulthood is generally viewed as a healthy time of life so the healthcare system is not well adapted to young people's needs. Not many young people access the healthcare system on a frequent basis and they may have very different circumstances despite their similar age. Many healthcare professionals are not used to managing the specific requirements of young people,” she says.

The study, just published in the journal Child: Care, Health and Development, explored the experiences of 10 young people with asthma and 11 who had been treated for cancer, aged 15 to 27, and their perceptions of how the healthcare system responded to their needs.

The researchers found New Zealand's health system generally failed to meet their requirements, though many encountered extraordinary individuals who supported them effectively.

Four key themes emerged from the study:

• Chronic illness changed young people's lives. Within the context of a “normal”, healthy young adulthood it can be particularly shocking and upsetting for those who are seriously unwell.
• They experienced an altered life trajectory. Illness or treatment caused some to delay or have gaps in their education, resulting in some having to change their study, or even career plans. Others came under financial pressure, with many forced to rely on family to support them.
• The illness and treatment affected their relationships. Some experienced strengthened bonds with family, friends and significant others, others had relationships which did not survive the illness or treatment.
• The health system provided a mixed range of experiences—from poor to extraordinary, which also varied by location.

“Overall, young people described a range of experiences with the healthcare system, including many where quality services were lacking.

“Positive experiences were largely related to individual skills and characteristics of the professionals, rather than robust, quality health structures and systems designed to provide high-quality outcomes for all young people.

“Young people with chronic illnesses value professionals who have a caring, empathetic responsive approach, but they do not always encounter this type of care from overworked professionals in the busy and rundown healthcare system,” Dr Sligo says.

Assumptions about young people as a group can be detrimental to their wellbeing, she believes, as, for example, they may experience delayed diagnoses, and their healthcare can be very siloed.

“The system needs to take into account the whole person. For example, most of the young people who had cancer, were discharged when their physical condition was treated but many had long lasting emotional trauma and mental health problems and some of the young people who had asthma encountered health professionals who made incorrect assumptions about them based on their culture.”

She believes young people need to consulted and actively included in decision-making about how health systems can be made more responsive to their diverse needs.

She hopes health professionals and policy makers understand the particular health requirements of young people, but also that being aware of, and responsive to, all individuals' differences—age, gender, culture, disability status, sexuality and background—will mean everyone gets better treatment.

The current Health and Disability System Review, which is due to provide an interim report to the Minister of Health by the end of the month provides an opportunity to address concerns raised in this study.

“I hope the review brings about more funding and more responsive, inclusive wraparound services based on the views of a broad range of people with different requirements of the healthcare system,” Dr Sligo says.

Publication details:

The experiences of young people with chronic illness in New Zealand: A qualitative study

Judith Sligo, Bernadette Jones, Cheryl Davies, Richard Egan, Tristram Ingham, Robert J. Hancox, Rosalina Richards.

Child: Care, Health and Development 45, September 2019.

For more information, contact:

Dr Judith Sligo
Senior Research Fellow
Department of Preventive and Social Medicine
University of Otago
Tel +64 3 479 7223
Email judith.sligo@otago.ac.nz

Ellie Rowley
Communications Adviser
External Engagement Division
University of Otago
Tel +64 3 479 8200
Mob +64 21 278 8200
Email ellie.rowley@otago.ac.nz