The Official Information Act: Maori with Lived Experience of Disability, and New Zealand Disability Data: a case study

This article presents a case study of the use of the Official Information Act 1982 (OIA), for research commissioned by the Waitangi Tribunal in 2018 into disability-related issues for Mäori. The responses of Crown organisations to OIA requests examined in this research highlight both issues with inconsistent application of the OIA, and limited access to information held and made available by Crown agencies for Mäori with lived experience of disability.1 The statutory time frame for responses to OIA requests was rarely met. Organisations also resisted providing information, while crucial information for ensuring equity for Mäori with lived experience of disability was often not able to be released because it was not collected at all. The impact of these limitations is discussed, particularly pertaining to core government roles of performance monitoring and ensuring accountability. In addition to querying who benefits from, and is privileged by, the OIA and its application, questions are raised around the necessary components of a legislation rewrite in order to deliver on a modern approach to official information that ensures equitable, high-performing and truly democratic public administration

Factors influencing referral to and uptake and attendance of pulmonary rehabilitation for chronic obstructive pulmonary disease: a qualitative evidence synthesis of the experiences of service users, their families, and healthcare providers (Protocol)

This is a protocol for a Cochrane Review (Qualitative). The object ives are as follows: • To identify factors that influence referral to pulmonary rehab ilitation for COPD from the perspective of service users, thei r family/carers, and healthcare providers. • To identify factors that influence uptake of pulmonary rehabil itation for COPD (i.e. at least one attendance of an assessment or first programme session) from the perspective of service users , their family/carers, and healthcare providers. • To identify factors that influence attendance at pulmonary reha bilitation programmes for COPD from the perspective of servi ce users, their family/carers, and healthcare providers. • To develop an inductive explanatory framework for how these f actors may interact to contribute to better or poorer uptake or completion of pulmonary rehabilitation in order to guide acti ons of healthcare decision-makers to improve opportunities fo r people with COPD to benefit from pulmonary rehabilitation

Determination of glass transitions in novel cellulose polymers by synchrotron wide-angle X-ray scattering

© 2014 Elsevier Ltd. Synchrotron wide angle X-ray scattering (WAXS) was used to measure the glass-transition temperature (Tg) values for various cellulosic materials including a novel cellulose ester. WAXS patterns were obtained of films cast on silicon nitride windows. Two strong scattering peaks were observed that correlated with the intramolecular repeating anhydroglucose unit (d=10.6-14.3Å) and an intermolecular packing spacing (d=4.4-4.5Å). Real-time measurements were made during temperature cycling over a range of 80-160°C at 5°C/min. Significant shifts in position, width and area for the peak assigned to the intermolecular arrangement of the pseudo-linear cellulose mixed-ester chains were correlated with temperature. The calculated Tg mid-points correlated well with Tg values determined by differential scanning calorimetry (DSC). This application of temperature-dependent WAXS measurements shows promise for Tg determination in samples where shallow second-order transitions are observed by DSC and where other techniques are not applicable

COVID-19, Intersectionality, and Health Equity for Indigenous Peoples with Lived Experience of Disability

As Māori and tāngata whaikaha (Māori with lived experience of disability) of the nation-state known as New Zealand, we are deeply concerned about the impacts of the COVID-19 pandemic. In this commentary, we invoke intersectionality as an analytical tool for understanding critical issues tāngata whaikaha face in the context of the universal approach encompassing New Zealand’s pandemic response. We propose a “call to action” framework comprising four elements: (1) guaranteeing self-determination for tāngata whaikaha; (2) addressing all forms of racism, ableism, and other structural forms of oppression; (3) rectifying historical injustices; and (4) allocating resources for the pandemic and beyond in alignment with need

Karanga rua, karanga maha: Māori with lived experience of disability self-determining their own identities

ABSTRACTFor Indigenous Māori in Aotearoa New Zealand, the impact of disability can be pervasive yet often invisible due to considerable gaps in the accuracy and interpretations of disability data and information for Māori. We present findings from a kaupapa Māori qualitative study that centres perspectives of Māori with lived experience of disability, exploring how they define and negotiate their identities within the context of health and wellbeing. Our findings emphasise how Western-centric constructs of ‘disability’ and related terms fail to align with te ao Māori perspectives. We discuss the notion of ‘karanga rua, karanga maha’ as a potential framework to understand how Māori with lived experience of disability conceptualise and express a plurality of identities within Māori collectives. Māori ways of being, knowing, relating and doing are vital to advancing understanding of the impacts of disability to address priorities and aspirations of Māori with lived experience of disability. There is a critical need for national level dialogue led by, with, and for Māori with lived experience of disability to define their collective identity, (re)claiming their own mātauranga and ways of knowing, in concert with recognition and acknowledgement of their tāngata whenua rights to full expression of tino rangatiratanga in their health and wellbeing.Glossary of Māori terms: aroha: love, compassion, empathy; hapū: kinship group, sub-tribe, sub-nation, to be pregnant; iwi: extended kinship group, tribe, nation, people, bone; ira: life principle; kaitiakitanga: guardianship; kanohi ki te kanohi: face-to-face; kapa haka: traditional Māori performing group; kāpō Māori: Māori with visual impairment, who are blind or deafblind; karanga: call or chant; karanga maha: person related through more than two lines of decent; karanga rua: someone related through two different lines, standing in a double relationship; ‘karanga rua, karanga maha’: a proposed framework for conceptualising Māori Disability identity - in reference to the integrated plurality of a person having two (rua) or many (maha) callings or intersectionally relational elements; kaumatua: elders; kaupapa Māori: Māori agenda, Māori principles, Māori ideology - a philosophical doctrine, incorporating the knowledge, skills, attitudes and values of Māori society; koro: elderly man, grandfather, term of address to an older man; kuia: elderly woman, grandmother, female elder; mana: spiritually sanctioned or endorsed influence, power and authority; manuhiri: visitor, guest; Māori: Indigenous Peoples of New Zealand; marae: courtyard, the open area in front of the wharenui, where formal greetings and discussions take place. Also used to include the complex of buildings; mātauranga: knowledge, wisdom; māuiui: illness, disorder; moemoeā: to have a dream, have a vision; ngāti Turi: Māori Deaf; Pākehā: foreign, New Zealander of European descent; Papatūānuku: Earth Mother; pēpi: baby, infant; rangatahi: younger generation; rangatira: chief/chieftainess; rohe: boundary, territory; rongoā: medicine, remedy; tamariki: children; tāngata: people; tāngata Turi: Māori Deaf; tāngata whaikaha: an empowering umbrella term used to encompass people (of all ethnicities) with lived experience of disability (literally: people striving for enablement); tāngata whaikaha Māori: an empowering umbrella term used to encompass Māori people with lived experience of disability (literally: people striving for enablement); tāngata whenua: people born of the land - of the placenta and of the land where the people's ancestors have lived and where their placenta are buried; tapu: sacred; te ao Māori: the Māori world; te ao Pākehā: the Pākehā (foreign) world; te ao tawhito: the ancient world; te reo Māori: the Māori language; Te Tiriti o Waitangi: the Māori version of the Treaty of Waitangi; forms the foundation of the contractual relationship between two internationally recognised sovereign nations – Māori, as tāngata whenua (people of the land), and the British Crown; tino rangatiratanga: absolute sovereignty, self-determination; tūrangawaewae: standing, place where one has the right to stand; tikanga Māori: customary system of values and practices developed over time and deeply embedded in the social context; tīpuna/tupuna: ancestors; wairua: spirit, soul; wānanga: to meet, discuss, deliberate, consider; Whaikaha: Te Reo Māori name of the Ministry of Disabled People; whakamā: to be ashamed, shy, bashful, embarrassed; whakapapa: ancestry, genealogy, familial relationships; whanau: to be born, extended family, family group; whānau hauā: a name for Māori with lived experience of disability; wharekai: dining hall; wharenui: meeting house, large house; whenua: placenta, ground, land

Cultural factors influencing the uptake of pulmonary rehabilitation by Maori in New Zealand: A grounded theory investigation.

There is little research on experiences of rehabilitation among indigenous people in colonised countries (370 million people worldwide).1 This New Zealand (NZ) study examined the influence of cultural factors on uptake of pulmonary rehabilitation (PR) – an intervention known to improve function and quality of life in people with chronic obstructive pulmonary disease (COPD).2,

Whakawhanaungatanga: culturally-meaningful connections as a pathway to better health for Maori with chronic obstructive pulmonary disease - a qualitative study

Background: Pulmonary rehabilitation is known to improve function and quality of life for people with chronic obstructive pulmonary disease (COPD). However, little research has been conducted on the influence of culture on experiences of pulmonary rehabilitation. This study examined factors influencing uptake of pulmonary rehabilitation by Māori with COPD in New Zealand. Method: Grounded theory nested within kaupapa Māori methodology. Transcripts were analyzed from interviews and focus groups with 15 Māori and ten New Zealand non-Māori invited to attend pulmonary rehabilitation for COPD. Māori participants had either attended a mainstream hospital-based program, a community-based program designed “by Māori , for Māori ”, or had experienced both. Results: Several factors influencing uptake of pulmonary rehabilitation were common to all participants regardless of ethnicity: 1) participants’ past experiences (eg, of exercise; of health care systems), 2) attitudes and expectations, 3) access issues (eg, time, transport, and conflicting responsibilities), and 4) initial program experiences. These factors were moderated by the involvement of family and peers, interactions with health professionals, the way information on programs was presented, and by new illness events. For Māori, however, several additional factors were also identified relating to cultural experiences of pulmonary rehabilitation. In particular, Māori participants placed high value on whakawhanaungatanga: the making of culturally meaningful connections with others. Culturally appropriate communication and relationship building was deemed so important by some Māori participants that when it was absent, they felt strongly discouraged to attend pulmonary rehabilitation. Only the more holistic services offered a program in which they felt culturally safe and to which they were willing to return for ongoing rehabilitation. Conclusion: Lack of attention to cultural factors in the delivery of pulmonary rehabilitation may be a barrier to its uptake by indigenous, minority ethnic groups, such as New Zealand Māori . Indigenous-led or culturally responsive health care interventions for COPD may provide a solution to this issue