The development of a supportive care needs assessment tool for Indigenous people with cancer

Patricia C Valery,Catherine Jacka,Peter O’Rourke,Monika Janda,Adèle C Green,Gail Garvey,Vanessa L Beesley

doi:10.1186/1471-2407-12-300

Abstract

BackgroundLittle is known about the supportive care needs of Indigenous people with cancer and to date, existing needs assessment tools have not considered cultural issues for this population. We aimed to adapt an existing supportive care needs assessment tool for use with Indigenous Australians with cancer.MethodsFace-to-face interviews with Indigenous cancer patients (n = 29) and five focus groups with Indigenous key-informants (n = 23) were conducted to assess the face and content validity, cultural acceptability, utility and relevance of the Supportive Care Needs Survey - Short Form 34 (SCNS-SF34) for use with Indigenous patients with cancer.ResultsAll items from the SCNS-SF34 were shortened and changed to use more appropriate language (e.g. the word 'anxiety' was substituted with 'worry'). Seven questions were omitted (e.g. items on death and future considerations) as they were deemed culturally inappropriate or irrelevant and 12 items were added (e.g. accessible transport). Optional instructions were added before the sexual items. The design and response format of the SCNS-SF34 was modified to make it easier to use for Indigenous cancer patients. Given the extensive modifications to the SCNS-SF34 and the liklihood of a different factor structure we consider this tool to be a new tool rather than a modification. The Supportive care needs assessment tool for Indigenous people (SCNAT-IP) shows promising face and content validity and will be useful in informing services where they need to direct their attention for these patients.ConclusionsIndigenous people with cancer have language, customs and specific needs that are not accommodated within the standard SCNS-SF34. Our SCNAT-IP improves acceptability, relevance and face validity for Indigenous-specific concerns. Our SCNAT-IP will allow screening for supportive care needs that are specific to Indigenous cancer patients' and greatly inform targeted policy development and practice.

Highlights

Little is known about the supportive care needs of Indigenous people with cancer and to date, existing needs assessment tools have not considered cultural issues for this population
Indigenous Australian cancer patients are more likely to be diagnosed with cancer at advanced stages, and with cancers that have higher mortality rates; they have a greater number of co-morbidities [2,3]
Indigenous Australians, as do Indigenous peoples from other countries such as New Zealand, Canada and the US differ from their non-Indigenous counterparts in the way they conceptualize health and their cultural and belief systems [5]

Summary

Introduction

Little is known about the supportive care needs of Indigenous people with cancer and to date, existing needs assessment tools have not considered cultural issues for this population. In recognition that there are cultural differences in the way most Indigenous peoples perceive cancer (a highly feared disease that equates to death), receive and process information about their cancer diagnosis and treatment, and cope with illness [5,8,9,10,11,12], research into the specific supportive care needs of Indigenous populations is crucial for provision of appropriate supportive care These underlying beliefs can bring on additional stress and may prevent them from accessing cancer services and/or commencing or completing cancer treatments

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