title: Views on clinical trial recruitment, biospecimen collection, and cancer research: population science from landscapes of the Haudenosaunee (People of the Longhouse).

authors: Haring, Rodney C.

subjects: American Indian

abstract: Biomedical research in culturally distinct communities is often a challenge. Potential barriers to participation occur because science is presented in a format that lacks cultural acknowledgement. Investigations may also fail to showcase beneficial relevance to the communities or include them in true partnership. The history of biomedical research within Native American societies has been complicated by these issues. Historical trauma among many Native groups sometimes transcends into contemporary challenges in both recruitment to and participation particularly in biobanking research. The participants for this study included members of the Haudenosaunee, the People of the Longhouse. Native Americans, including the Haudenosaunee, endure some of the worst health disparities in the country. These include high rates of cancer, obesity, and diabetes which may be linked at least partially to genetic predisposition. Results from a Haudenosaunee urban population shared response on ways to improve recruitment strategies for biospecimen, cancer, and other health-related clinical trials. Mixed methods approaches were used, and community responses indicated the importance of creating trust through respectful partnership; promoting culturally appropriate recruitment materials; the need for a greater understanding of consenting and signature processes; the necessity for concise summary sheets; and a desire to have information that community member understand. Discussion items also include international Indigenous perspectives to biobanking and genetic-related health disparity research.

text: Views on clinical trial recruitment, biospecimen collection, and cancer research: population science from landscapes of the Haudenosaunee (People of the Longhouse). Biomedical research in culturally distinct communities is often a challenge. Potential barriers to participation occur because science is presented in a format that lacks cultural acknowledgement. Investigations may also fail to showcase beneficial relevance to the communities or include them in true partnership. The history of biomedical research within Native American societies has been complicated by these issues. Historical trauma among many Native groups sometimes transcends into contemporary challenges in both recruitment to and participation particularly in biobanking research. The participants for this study included members of the Haudenosaunee, the People of the Longhouse. Native Americans, including the Haudenosaunee, endure some of the worst health disparities in the country. These include high rates of cancer, obesity, and diabetes which may be linked at least partially to genetic predisposition. Results from a Haudenosaunee urban population shared response on ways to improve recruitment strategies for biospecimen, cancer, and other health-related clinical trials. Mixed methods approaches were used, and community responses indicated the importance of creating trust through respectful partnership; promoting culturally appropriate recruitment materials; the need for a greater understanding of consenting and signature processes; the necessity for concise summary sheets; and a desire to have information that community member understand. Discussion items also include international Indigenous perspectives to biobanking and genetic-related health disparity research.

year: 2018

title: Youth perceptions of suicide and help-seeking: 'They'd think I was weak or “mental”'

authors: Curtis, Cate

subjects: suicide

abstract: Youth suicide is an issue of international concern and the college population may have a considerably higher rate of suicidal behaviour than the general population, yet seeking help for suicidality is uncommon. This research sought to understand college students' knowledge of suicidal behaviour and attitudes to help-seeking, in a New Zealand university. A mixed-method approach comprising a survey and interviews was utilised. Approximately one-fifth of participants had been suicidal, were aware of another student's suicide and/or had supported a suicidal student. Some participants expressed willingness to seek help for another, but far fewer were willing to seek help for themselves. Key reasons for the latter include stigma and a perceived need for self-reliance. Participants expressed greater willingness to seek help for another if they were not a close friend.

text: Youth perceptions of suicide and help-seeking: 'They'd think I was weak or “mental”' Youth suicide is an issue of international concern and the college population may have a considerably higher rate of suicidal behaviour than the general population, yet seeking help for suicidality is uncommon. This research sought to understand college students' knowledge of suicidal behaviour and attitudes to help-seeking, in a New Zealand university. A mixed-method approach comprising a survey and interviews was utilised. Approximately one-fifth of participants had been suicidal, were aware of another student's suicide and/or had supported a suicidal student. Some participants expressed willingness to seek help for another, but far fewer were willing to seek help for themselves. Key reasons for the latter include stigma and a perceived need for self-reliance. Participants expressed greater willingness to seek help for another if they were not a close friend.

year: 2010

title: "That's the price we pay": Kaupapa Māori Programme stakeholder experiences of external evaluation

authors: Masters-Awatere, Bridgette

subjects: Evaluation

abstract: This thesis takes a critical approach to the evaluation of Māori social and health service provision progammes through an in-depth exploration of the dynamics, impacts and politics of such exercises within Māori communities, and upon relationships between Māori and the Crown, and its agents. Since the mid 1980s, New Zealand government devolved responsibilities that heralded a change in economic focus and provided a pathway for targeted service provision, such as social and health programmes, amongst communities. The combined shift to Neoliberal economics and the virtual hegemony enjoyed by right wing economic commentators, policy-makers and business leaders meant that newly anointed Māori service providers were not fully prepared for the subsequent rise in demand for narrowly defined accountability requirements that did not reflect Māori aspirations or values.

This study sought to critically engage with the experiences of stakeholders affected by an external evaluation of “By Māori, for Māori” services. Qualitative data capturing stakeholder narratives, demonstrated the complex relationships and range of emotions experienced by programme stakeholders. Four case studies contain stories that highlight: service provider relationships built on betrayal that contributed to programme tensions and influenced the design of the evaluation; different stakeholder information needs that shaped their expectation of an evaluation; service provider vulnerability when implementing cultural values with their funder, who then seeks financial gain from that knowledge, and; the close links of Kaupapa Māori programmes and their evaluations to socio-cultural and political agendas.

The cases highlight ways Māori evaluators operated from a reflexive approach that recognised two worldviews (Mātauranga Māori and the dominant models of Western social science) and sought to facilitate engaged evaluation relationships with different stakeholders. A proposed Cultural Confluent Evaluation model lays out the dynamics and tensions in an attempt to make visible the underlying agendas, but also the glossed ideologies of power and control attached to conventional evaluations. As existing programmes continue to be examined for their cultural responsiveness, and as new culturally-centred programmes are proposed, the need for culturally embedded evaluation is even more evident.

text: "That's the price we pay": Kaupapa Māori Programme stakeholder experiences of external evaluation This thesis takes a critical approach to the evaluation of Māori social and health service provision progammes through an in-depth exploration of the dynamics, impacts and politics of such exercises within Māori communities, and upon relationships between Māori and the Crown, and its agents. Since the mid 1980s, New Zealand government devolved responsibilities that heralded a change in economic focus and provided a pathway for targeted service provision, such as social and health programmes, amongst communities. The combined shift to Neoliberal economics and the virtual hegemony enjoyed by right wing economic commentators, policy-makers and business leaders meant that newly anointed Māori service providers were not fully prepared for the subsequent rise in demand for narrowly defined accountability requirements that did not reflect Māori aspirations or values.

This study sought to critically engage with the experiences of stakeholders affected by an external evaluation of “By Māori, for Māori” services. Qualitative data capturing stakeholder narratives, demonstrated the complex relationships and range of emotions experienced by programme stakeholders. Four case studies contain stories that highlight: service provider relationships built on betrayal that contributed to programme tensions and influenced the design of the evaluation; different stakeholder information needs that shaped their expectation of an evaluation; service provider vulnerability when implementing cultural values with their funder, who then seeks financial gain from that knowledge, and; the close links of Kaupapa Māori programmes and their evaluations to socio-cultural and political agendas.

The cases highlight ways Māori evaluators operated from a reflexive approach that recognised two worldviews (Mātauranga Māori and the dominant models of Western social science) and sought to facilitate engaged evaluation relationships with different stakeholders. A proposed Cultural Confluent Evaluation model lays out the dynamics and tensions in an attempt to make visible the underlying agendas, but also the glossed ideologies of power and control attached to conventional evaluations. As existing programmes continue to be examined for their cultural responsiveness, and as new culturally-centred programmes are proposed, the need for culturally embedded evaluation is even more evident.

year: 2015