Examining young people’s knowledge, attitudes and perceptions of palliative care within a public health context
: a mixed methods study

  • Anita Mallon

Student thesis: Doctoral Thesis

Abstract

Background: Changes in societal culture, demographics and illness patterns have necessitated a reorientation in approaches to care of those with life limiting illness. Present systems of care predicated on professional input are unsustainable and have been associated with limits in access to services and a fragmentation of care processes. A public health approach to palliative care (PC) that re-orientates care towards the public, as drivers in identifying care priorities and partners in finding solutions to care issues, is widely advocated. A central tenet of such a collaborative approach is a consensus as to the meaning and remit of PC. Research to date looking at public knowledge and attitudes to PC has measured levels of knowledge focusing on older populations. There has been a lack of studies gauging the understanding of PC by younger adult populations. Investigating this population will help to tailor education and policy interventions aimed at empowering young people as citizens, advocates and mediators in the care of those with life limiting illness.
Aim: To examine young people’s knowledge, attitudes and perceptions of palliative care within the context of a public health approach.
Methods: An explanatory mixed methods two-phased design study was undertaken with university students aged 18-29 years and was based on a broad socioecological perspective. Phase one, an online survey (n=859), underpinned by the Theory of Planned Behaviour and a review of the literature, measured attitudes and perceptions of PC, knowledge was also measured using a validated scale (PaCKS). Phase two further explored perceptions of PC and employed semi-structured interviews with a purposive sample of survey respondents who agreed to be interviewed (n=24).
Findings: Phase One: Just over eight in ten respondents (83%, n=710) had heard of the term PC. Sixty-eight per cent wanted to know more about PC with only 36% (n=313) reporting that they knew where to find relevant information. Phase Two: qualitative exploration demonstrated issues relating to terminology, with participants relating PC with end of life care and a subject for consideration later in life. Participants rarely recounted the benefits of early initiation of PC and the rehabilitative aspects of PC. Prior experience and exposure to PC was an important factor in shaping attitudes and, while welcoming the opportunity to discuss PC, protective subjective norms prohibited more open discussion.
Conclusions: Young people in the study demonstrated a readiness to engage with PC. They suggested future public health approaches to PC aimed at engaging young people should ensure the dissemination of early and accurate information relating to populations that may require PC, the timing, delivery and outcomes of care. The results of this study suggest how public health initiatives can target the societal norms that, in aiming to protect young people, fail to recognise their potential as assets in positively influencing the environment in which people with life limiting illness live and die.
Date of AwardFeb 2020
Original languageEnglish
SponsorsDepartment for Employment and Learning, Northern Ireland.
SupervisorPaul Slater (Supervisor), Sonja McIlfatrick (Supervisor), Felicity Hasson (Supervisor) & Karen Casson (Supervisor)

Keywords

  • Theory of planned behaviour
  • Socio-ecological model

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