Engaging the Young Public with Palliative Care
Author: Dr Anita Mallon, Post-Doctoral Research Fellow, School of Nursing and Midwifery, Queens University Belfast
Date of publication: December 2021
Keywords: Palliative care, public health, young adults, knowledge, attitudes, perception, engagement
Why should people know about palliative care?
Why is it important for everyone to know about palliative care? Is it to improve access to services? Whilst many websites offering health care information encourage people to speak to their GP or healthcare provider about palliative care, typically people do not self-refer to palliative care. Is it to understand palliative care as a specialist service? If so, then we wouldn’t need to know more about it than any other speciality or know about it unless it applies directly to us at this moment.
Alternatively, is palliative care an umbrella term for care in serious illness, death, dying and loss? If this is the case, then the need for greater knowledge is much more apparent. Allowing us to understand how individuals react to serious illness, how communities support the dying and the bereaved and how organisations and policies respond to the needs of those affected by illness and loss.
People’s knowledge and views on palliative care are not formed in isolation. Therefore, it is important to understand the ways people interact with their communities and environments which will impact on this. A socio ecological perspective offers a way to understand and frame these influences on the individual. The socio-ecological model provided me with a much needed structure, placing the individual at the centre with understanding of palliative care potentially influenced by personal experience, family and friends, organisations, policies and cultural norms (1).
Why is it important to capture young people’s voices in palliative care discussions?
The drive to move palliative care up the list of public health priorities is a global concern. Yet the voices of young adults, a vital cohort of the public, are not present in the literature as their contribution has not been sought (2). As future professionals responsible for policy, research, and the practice of palliative care, their advocacy is necessary.
To address this gap, I conducted a study using a mixture of survey and interviews with young adults (aged 18-29) across faculties in one University. The aim of the study was to determine young adults’ knowledge and attitudes to palliative care and how further interest in palliative care could be promoted. Analysis was undertaken on 859 completed surveys and 24 interviews. [You can read a peer reviewed paper on this research here: Link]. While the sample of this study is limited to university students and does not represent all young people, it begins the process of engaging a population whose understanding of palliative care has not been gauged.
Are young adults interested in learning about palliative care?
My research found the majority of participants wanted to know more about palliative care. For some the interest was from their course. For others the interest came from experiences particularly in families. And for others it was an unexplored topic, something they had never been asked to consider.
What perceptions did young adults hold about palliative care?
Palliative care was considered end of life care primarily concerning death and dying and mostly related to advanced cancer. Seen as a service provided to relieve pain and distress, and provide comfort, palliative care represented a finality when all attempts at cure were exhausted.
Did young people think they needed to know about palliative care?
Yes, the majority did. Just how young to introduce the topic of palliative care, or more specifically death and dying was debated. The need to protect young children from the ‘unhappiness’ of palliative care was reflected on by many. The education system was considered a safe place for debate and social media as a place for accessing information in a form that was relevant to them.
Did they see it as relevant to them?
Yes. They could see the relevance but more in an advocacy and caring role for older family members. On a personal level, knowledge of palliative care was seen as a protective factor for the future.
What did young people identify as barriers to finding out more about palliative care?
Several themes emerged into which barriers were categorised. [To read about findings in more detail read a peer reviewed paper here: Link]
Everyone else: They considered young people more open as life experience and age had not yet created the barriers to exploring issues relating to death, dying and grief.
Unspoken pressure to conform: The more positive friends and family were about palliative care the more positive the attitudes and readiness to find out more about palliative care. However, when explored at interview, the fear of causing further distress by openly discussing issues related to death and dying was evident in all accounts. A participant related how in the midst of personal grief they felt compelled to provide ‘the get out of jail free card’ to others by accepting distractions and positivity rather than acknowledging loss.
The perceived seriousness of the topic was apparent in the conduct of the interview. The tone was soft with an air of reverence attached to the subject. It seemed that speaking aloud somehow could break or undermine the fragility of the situation that palliative care represented. This was supported by the content of the interviews where participants reported only intimate conversations between family members and friends with shared experiences.
How do we get young people interested in palliative care?
- Provide a cue to trigger the inquiry which could be something as simple as filling in a survey.
- Acknowledge that young people have unique assets such as time, youthfulness, energy and insight to contribute to palliative care.
- Use relevant communication platforms such as social media to stimulate interest and promote engagement.
Conclusion
The meaning and framing of palliative care will continue to be debated, however, it is clear that discussions about the end of life are not yet comfortably spoken about by the public. Knowledge of palliative care is viewed in some countries with less healthcare resources as health awareness, whereas in countries with more resources it is focused on illness. This limits public engagement especially of the young where avoiding illness has been part of a daily mantra. Yet those affected by serious illness, death and grief require visibility and strong public advocacy.
These young adults have a voice but need to be provided with the knowledge of how to use it to propel palliative care up the list of health care priorities. And crucially with a firm knowledge base, they can affect a culture change where serious illness, death, dying and grief can be openly discussed and new norms created. It was through the lens of the young people in my research that the potential for palliative care of a willing and knowledgeable community became apparent. A public health approach to palliative care was embodied in the energy and interest shown by these young adults.
Blog article reference list below:
1. Simons-Morton B, McLeroy K, Wendel M. Behavior theory in health promotion practice and research: Jones & Bartlett Publishers; 2012.
2. McIlfatrick S, Hasson F, McLaughlin D, Johnston G, Roulston A, Rutherford L, et al. Public awareness and attitudes toward palliative care in Northern Ireland. BMC palliative care. 2013;12(1):1-7.
If you wish to read more about this research, see a list of peer-reviewed published articles by the author below:
Mallon A, Slater P, Hasson F, Casson K, McIlfatrick S. What do young adults know about palliative care? A cross-sectional survey. Public Health. 2021 Feb 1;191:78-84.
Mallon A, Hasson F, Casson K, Slater P, McIlfatrick S. Young adults understanding and readiness to engage with palliative care: extending the reach of palliative care through a public health approach: a qualitative study. BMC palliative care. 2021 Dec;20(1):1-3.
