Kia Mau te Kahu Whakamauru: Health Literacy in Palliative Care June 2014 Dr Jacquie Kidd Susan Reid Nicola Collins Dr Veronique Gibbons Stella Black Rawiri Blundell Tamati Peni Matua Hone Ahu Te puāwaitanga o te hinengaro mō te tangata He Mihimihi He hōnore, he korōria ki te Atua He maungarongo ki te whenua He whakaaro pai ki ngā tāngata katoa Tēnā rā koutou, e te iwi nui tonu, ka whakakorōria tonu i te Atua Kaha Rawa. Kia tau tonu ōna manaakitanga maha ki runga i Te Arikinui Kīngi Tūheitia, me te Whare o te Kāhui Ariki. Kua tangihia kēngia, ngā mate o te wā! Nō reira, rātou ki a rātou! Tātou, kē, o te ao mōrehu, ki a tātou! Ka kitea i raro nei, he kaupapa whakahirahira, ka pā ki ngā tāngata kua tino pāngia e ngā momo mate pukupuku, me ngā tūroro, kua tata whakawhiti atu ki tua o te ārai. Anō hoki, o rātou whānau e mōhio pai ana ki ngā āhuatanga whai pānga ki te manaaki pai i te tūroro. E mihi ana ki ngā whānau kua uiuingia mō te taha rangahau o te kaupapa me rātou ngā kaimahi o te ratonga mō ngā tūroro kua tata te whakawhiti ki tua o te ārai. Mā te Runga Rawa e tiaki, e manaaki tonu i a koutou; ahakoa te aha! This report was written by Dr Jacquie Kidd (University of Auckland); Susan Reid (Workbase Education Trust); Nicola Collins (UniServices), Stella Black (University of Auckland), Dr Veronique Gibbons (University of Auckland); Rawiri Blundell (Midlands Cancer Network); Tamati Peni (University of Waikato) and Matua Hone Ahu (Tainui). This study was supported by many people and we appreciate their wisdom, guidance and time. Whānau very generously shared their compelling and moving stories and experiences with us. We thank the following organisations for supporting us: o Mercy Hospice (Auckland) o Hospice West Auckland o Waipuna Hospice (Tauranga) o Hospice Eastern Bay of Plenty o Kaitiaki Nursing Service (Tauranga) o Te Whānau O Waipareira o ADHB Palliative Care Team o Western Bay of Plenty PHO o Kimihauora, Bay of Plenty o Auckland Cancer Society We thank the Ministry of Health (MOH) and the Health Research Council of New Zealand (HRC) for funding this study and giving us the opportunity to prepare a research agenda for the future. Special thanks to Professor Ross Lawrenson from the School of Medicine and colleagues from the School of Nursing for their expertise and support of this study. ii Contents He Mihimihi ..................................................................................................................................................... ii Contents ................................................................................................................................................................ iii Tables....................................................................................................................................................................... v Figures ..................................................................................................................................................................... v Whakarāpopototanga – Executive Summary ....................................................................................... vi Method ............................................................................................................................................................. vi Findings .......................................................................................................................................................... vii Nga Kitenga Matua – Key Points .................................................................................................................. x Section 1: Kupu Whakataki ‐ Introduction ............................................................................................. 1 1.1 Palliative care .................................................................................................................................... 1 1.2 Health literacy ................................................................................................................................... 3 1.3 Literature review ............................................................................................................................. 5 1.4 This study ............................................................................................................................................ 7 Section 2: Rautaki Mahi – Methodology .................................................................................................. 9 2.1 Research design................................................................................................................................ 9 2.2 Recruitment ....................................................................................................................................... 9 2.3 Data collection ................................................................................................................................ 10 2.4 Data analysis .................................................................................................................................... 13 2.5 Ethics ................................................................................................................................................... 16 2.6 Limitations ........................................................................................................................................ 16 Section 3: Nga Kitenga ‐ Findings ............................................................................................................. 18 3.1 Health professionals’ concepts of health literacy in practice ..................................... 19 3.2 Written resource analysis .......................................................................................................... 20 3.3 Accessing and utilising palliative care services ................................................................ 22 3.4 Health literacy demands ............................................................................................................. 25 3.5 Health literacy practices ............................................................................................................. 30 iii 3.6 Barriers .............................................................................................................................................. 35 3.7 Navigating the palliative care system ................................................................................... 41 3.8 Communication processes ......................................................................................................... 42 3.9 Summary ........................................................................................................................................... 47 Section 4: He matapakinga me he whakatepe – Discussion and conclusion ......................... 49 4.1 Access ................................................................................................................................................. 49 4.2 Health literacy demands ............................................................................................................. 52 4.3 Reducing health literacy demands ......................................................................................... 53 4.4 Health literacy practices ............................................................................................................. 53 4.5 Communication .............................................................................................................................. 55 4.6 Systemic or organisational health literacy practices ..................................................... 56 4.7 Conclusion ........................................................................................................................................ 57 Section 5: Research Agenda ........................................................................................................................ 59 Figure 1: Research agenda .................................................................................................................... 61 References .......................................................................................................................................................... 63 Glossary ............................................................................................................................................................... 71 Appendix One: Literature Review ............................................................................................................ 75 Appendix Two: List of resources analysed ........................................................................................... 96 Appendix Three: Health literacy demands ........................................................................................ 101 Appendix Four: Patient Whānau Information Letter, Consent Form & Interview Schedule ........................................................................................................................................................... 106 Appendix Five: Health Professional Information Letter, Consent Form & Focus Group Interview Schedule, Key Informant Interview Schedule ............................................................. 112 iv Tables Table 1: Health professional participants .................................................................................. 11 Table 2: Key informants