title: Āta whakarongo: Understanding whānau experiences of audiology early intervention

authors: Dargaville, Cynthia Michelle

subjects: Māori

abstract: For tamariki with hearing loss, early intervention is of critical importance in maximising speech and language, socio-emotional and academic development outcomes. Better hearing outcomes can be achieved by minimising diagnosis delays and initiating intervention treatment as soon as possible. Preliminary data from Waikato District Health Board indicated an equity gap at the point of diagnosis with persisting inequities for tamariki Māori during the delivery of early intervention services. High rates of appointment non-attendance within this group (27% Māori vs. 8% for non-Māori) are a cause for concern when approximately 50% of total appointments are for tamariki Māori. This research seeks to understand the experiences of Māori whānau accessing Waikato’s Audiology Early Intervention Service in order to identify changes the service can make to improve Māori engagement in the future. This study uses qualitative methodologies within a kaupapa Māori framework to investigate the access experiences of Māori whānau of tamariki identified with hearing loss. Interviews with six whānau from Hamilton city and rural Waikato provided rich narratives to inform changes to the Audiology Service to improve the hearing outcomes of tamariki Māori. Whānau shared systems and practical barriers that contributed to challenges with attending appointments including the location, appointment timing, travel and parking. From entering an unwelcoming waiting area, whānau described the added stress experienced to the depth of their emotional response to the hearing loss diagnosis. All shared positive interactions with staff and detailed what could have made their health experience better. After leaning into the kōrero and connecting to the whānau experience, a Manaaki-based pathway is proposed to support Māori ways of being, to ease whānau through the barriers and to combat the alienating experiences of engaging with the health system.

text: Āta whakarongo: Understanding whānau experiences of audiology early intervention For tamariki with hearing loss, early intervention is of critical importance in maximising speech and language, socio-emotional and academic development outcomes. Better hearing outcomes can be achieved by minimising diagnosis delays and initiating intervention treatment as soon as possible. Preliminary data from Waikato District Health Board indicated an equity gap at the point of diagnosis with persisting inequities for tamariki Māori during the delivery of early intervention services. High rates of appointment non-attendance within this group (27% Māori vs. 8% for non-Māori) are a cause for concern when approximately 50% of total appointments are for tamariki Māori. This research seeks to understand the experiences of Māori whānau accessing Waikato’s Audiology Early Intervention Service in order to identify changes the service can make to improve Māori engagement in the future. This study uses qualitative methodologies within a kaupapa Māori framework to investigate the access experiences of Māori whānau of tamariki identified with hearing loss. Interviews with six whānau from Hamilton city and rural Waikato provided rich narratives to inform changes to the Audiology Service to improve the hearing outcomes of tamariki Māori. Whānau shared systems and practical barriers that contributed to challenges with attending appointments including the location, appointment timing, travel and parking. From entering an unwelcoming waiting area, whānau described the added stress experienced to the depth of their emotional response to the hearing loss diagnosis. All shared positive interactions with staff and detailed what could have made their health experience better. After leaning into the kōrero and connecting to the whānau experience, a Manaaki-based pathway is proposed to support Māori ways of being, to ease whānau through the barriers and to combat the alienating experiences of engaging with the health system.

year: 2023

title: Safety hubs and partnership policing: Coordination, collaboration and partnership working in Auckland city centre

authors: Tompson, Lisa

subjects: Community Safety

abstract: This report presents key insights from an exploratory study of the Safety Hub initiative that first appeared in the run up to the 2023 Women’s World Cup in Auckland. It highlights the potential and the pitfalls of partnership-based approaches to community safety in Aotearoa New Zealand. The study was based on a series of in-person focus group discussions and semi-structured interviews with key partners and stakeholders including Community Patrols New Zealand (CPNZ) volunteers, NZ Police (Auckland city Beat officers and Liaison staff), Auckland council staff and Ngā Watene Māori (Māori Wardens). Data collection for this study took place over a four-month period from November 2024 through to February 2025, structured around the availability of participants. The study employed a thematic analysis methodology to systematically identify and organise key themes and issues within the qualitative data gathered from interviews and focus groups.
In summary, the operational reality of the Safety Hub was rather less structured and more ‘organic’ than some participants had hoped, but it still delivered meaningful outcomes. The Safety Hub made its own valuable contribution to community safety while the difficulties it faced helped identify the need for a wider, linked-up ecosystem of community safety in Auckland city. The Hub has proved itself to be a viable concept, that diverse partners can work together in a shared space, and that the presence of volunteers does offer reassurance and can make people feel safer. However, those involved in the Hub also identified a range of challenges that need to be overcome if the Hub is to be more than just a base for increasing the visibility and presence of capable guardians.

text: Safety hubs and partnership policing: Coordination, collaboration and partnership working in Auckland city centre This report presents key insights from an exploratory study of the Safety Hub initiative that first appeared in the run up to the 2023 Women’s World Cup in Auckland. It highlights the potential and the pitfalls of partnership-based approaches to community safety in Aotearoa New Zealand. The study was based on a series of in-person focus group discussions and semi-structured interviews with key partners and stakeholders including Community Patrols New Zealand (CPNZ) volunteers, NZ Police (Auckland city Beat officers and Liaison staff), Auckland council staff and Ngā Watene Māori (Māori Wardens). Data collection for this study took place over a four-month period from November 2024 through to February 2025, structured around the availability of participants. The study employed a thematic analysis methodology to systematically identify and organise key themes and issues within the qualitative data gathered from interviews and focus groups.
In summary, the operational reality of the Safety Hub was rather less structured and more ‘organic’ than some participants had hoped, but it still delivered meaningful outcomes. The Safety Hub made its own valuable contribution to community safety while the difficulties it faced helped identify the need for a wider, linked-up ecosystem of community safety in Auckland city. The Hub has proved itself to be a viable concept, that diverse partners can work together in a shared space, and that the presence of volunteers does offer reassurance and can make people feel safer. However, those involved in the Hub also identified a range of challenges that need to be overcome if the Hub is to be more than just a base for increasing the visibility and presence of capable guardians.

year: 2025

title: Impacts for Children Living with Genetic Muscle Disorders and their Parents - Findings from a Population-Based Study

authors: Jones, Kelly

subjects: Neuromuscular diseases

abstract: BACKGROUND: Genetic muscle disorders, including muscular dystrophies, congenital myopathies, and ion channel muscle diseases can be associated with significant disability. 
OBJECTIVE: This study aimed to explore child and parent perspectives of the impact of living with a genetic muscle disorder. 
METHODS: Eighty-three children (<16 years) with a clinical or molecular diagnosis were identified as part of a national prevalence study. Parents' experiences and needs were assessed using a study-specific questionnaire. Additional outcome measures included parent and child self-report versions of the Behavior Assessment System for Children and the Pediatric Quality of Life Inventory. Parents also completed the Hospital Anxiety and Depression Scale and Activlim.
RESULTS: Sixty-four percent of families had a combined annual household income below $60,000 NZD ($43,650 USD), being less than the national median income of $73,000 NZD ($53,112 USD). Parents reported needing more support than they were currently receiving (40%), particularly with household chores (23%) and transportation (17%). Few parents (13%) or children (4%) reported significant child behavioral difficulties. Risks of impaired quality of life were high (parent proxy 71%, child report 70%), and associated with co-morbid health conditions (p = 0.008), functional status (p = 0.001), wheelchair use (p = 0.001) and mechanical ventilation (p = 0.01). 
CONCLUSIONS: Findings are relevant to those involved in the care and support of children, and their families, who are impacted by genetic muscle disorders. Targeted guidelines are required to inform the provision of services, alongside promotion of existing community services to improve access to financial support, and assistance with day-to-day functioning. Future research should examine intervention and treatment options aimed at maximising affected children's quality of life.

text: Impacts for Children Living with Genetic Muscle Disorders and their Parents - Findings from a Population-Based Study BACKGROUND: Genetic muscle disorders, including muscular dystrophies, congenital myopathies, and ion channel muscle diseases can be associated with significant disability. 
OBJECTIVE: This study aimed to explore child and parent perspectives of the impact of living with a genetic muscle disorder. 
METHODS: Eighty-three children (<16 years) with a clinical or molecular diagnosis were identified as part of a national prevalence study. Parents' experiences and needs were assessed using a study-specific questionnaire. Additional outcome measures included parent and child self-report versions of the Behavior Assessment System for Children and the Pediatric Quality of Life Inventory. Parents also completed the Hospital Anxiety and Depression Scale and Activlim.
RESULTS: Sixty-four percent of families had a combined annual household income below $60,000 NZD ($43,650 USD), being less than the national median income of $73,000 NZD ($53,112 USD). Parents reported needing more support than they were currently receiving (40%), particularly with household chores (23%) and transportation (17%). Few parents (13%) or children (4%) reported significant child behavioral difficulties. Risks of impaired quality of life were high (parent proxy 71%, child report 70%), and associated with co-morbid health conditions (p = 0.008), functional status (p = 0.001), wheelchair use (p = 0.001) and mechanical ventilation (p = 0.01). 
CONCLUSIONS: Findings are relevant to those involved in the care and support of children, and their families, who are impacted by genetic muscle disorders. Targeted guidelines are required to inform the provision of services, alongside promotion of existing community services to improve access to financial support, and assistance with day-to-day functioning. Future research should examine intervention and treatment options aimed at maximising affected children's quality of life.

year: 2018