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Table 2 Degree to which each comparator covered the topics identified by Indigenous people and health care providers

From: Measuring health care experiences that matter to Indigenous people in Australia with cancer: identifying critical gaps in existing tools

Topic: key elementsb Comparatorsa
Indicators Surveys
Feeling safe in the system: Cultural safety; hospital surroundings in context of cultural safety; trust in system and individual staff; personal history; colonisation; identification as Indigenous; relationships; experiences of racism; Stolen Generationsc; being away from one’s Country. P P P P
Importance of Indigenous care providers: Crucial aspect for whole pathway; access requires monitoring; lack of Indigenous care providers; benefits to staff of Indigenous care providers; importance of ACCHOs. N N N N
Barriers to care: Transport, accommodation, money, especially for those away from Country; requires monitoring despite programs existing; separation from family – costs of family presence. N P N P
Role of family and friends; Relieves fear and anxiety; accommodating family (literally and figuratively) in hospital setting; range of support needs for patient; different types of support for family; information flow; role of patient within family influences support needs. N P P P
Effective communication and education: Reduced ability to absorb diagnosis; check for understanding after information provision; language; relationship as facilitator of communication; listening; communication with family; unconscious bias; feeling safe to ask questions. P P P P
Coordination of care: Crucial and lacking; assistance to navigate and culturally safe patient navigators needed. P P P P
Transition between services: Lacking in coordination; culturally appropriate support services at home absent. P P P P
Carers’ wellbeing: Sustained periods of stress with lack of attention to carer’s needs, no follow-up. N P N P
Palliative care: Cultural safety of palliative care N N N/A N
  1. a For more detail on comparators, see Table 1
  2. A Eight cancer-specific patient experience indicators, part of National Cancer Control Indicators (NCCI) [36];
  3. B Prioritised list of 20 patient experience cancer-specific indicators [7];
  4. C Service-oriented survey; standard adult hospital inpatient experiences of care survey [37];
  5. D Pathway-oriented experiences of care survey; cancer-specific [40]
  6. AC Adequately Captured, P Partially captured, N Not captured at all, N/A Not Applicable - not a cancer-specific comparator
  7. b As reported in Green et al. 2018 [16]
  8. c Stolen Generations; a term referring to “the generations of Indigenous children that were forcibly removed from their families by compulsion, duress or undue influence, as a result of protectionist and child welfare laws, practices and policies in place in Australia for most of the 1900s” [42]
  9. Abbreviations: ACCHO Aboriginal Community Controlled Health Organisation