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

BACKGROUND: 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. We aimed to adapt an existing supportive care needs assessment tool for use with Indigenous Australians with cancer. METHODS: Face-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. RESULTS: All 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. CONCLUSIONS: Indigenous 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.

Experiential learning to increase palliative care competence among the Indigenous workforce: an Australian experience.

OBJECTIVES: Improving Indigenous people's access to palliative care requires a health workforce with appropriate knowledge and skills to respond to end-of-life (EOL) issues. The Indigenous component of the Program of Experience in the Palliative Approach (PEPA) includes opportunities for Indigenous health practitioners to develop skills in the palliative approach by undertaking a supervised clinical placement of up to 5 days within specialist palliative care services. This paper presents the evaluative findings of the components of an experiential learning programme and considers the broader implications for delivery of successful palliative care education programme for Indigenous people. METHODS: Semistructured interviews were conducted with PEPA staff and Indigenous PEPA participants. Interviews were recorded, transcribed and key themes identified. RESULTS: Participants reported that placements increased their confidence about engaging in conversations about EOL care and facilitated relationships and ongoing work collaboration with palliative care services. Management support was critical and placements undertaken in settings which had more experience caring for Indigenous people were preferred. Better engagement occurred where the programme included Indigenous staffing and leadership and where preplacement and postplacement preparation and mentoring were provided. Opportunities for programme improvement included building on existing postplacement and follow-up activities. CONCLUSIONS: A culturally respectful experiential learning education programme has the potential to upskill Indigenous health practitioners in EOL care.

Navigating the cancer journey: a review of patient navigator programs for Indigenous cancer patients.

Patient navigator programs have evolved to facilitate access to care and improve outcomes for Indigenous cancer patients. We reviewed the scientific literature on patient navigator programs in Indigenous people with cancer. We conducted a review of the published literature up to 13 April 2011. PubMed, MEDLINE and CINAHL databases were searched for original articles on Indigenous patient navigation programs. The review produced eight relevant articles covering two specific programs, the Native Sisters Program and the Walking Forward Program. Program descriptions, patient navigator's roles, cultural aspects and the impact of the programs were described. Patient navigators' roles in the programs varied, as did their qualifications, but importantly, all were Indigenous. Both programs aimed to increase participation in screening, remove barriers to treatment and decrease mortality. The Native Sisters Program documented an increase in adherence to breast screening among navigated American Indian participants, although there were substantial differences in the baseline screening adherence between navigated and non-navigated participants. The Walking Forward Program yielded on average 3 fewer days of treatment delays for navigated American Indians than for non-navigated American Indians. However, adjustments for socioeconomic characteristics and disease characteristics were not described. Although preliminary outcomes are seemingly positive, further rigorous evaluation of quantitative impacts are needed.