Ethnic inequities in use of breast conserving surgery and radiation therapy in Aotearoa/New Zealand: which factors contribute?

PURPOSE: Aotearoa/New Zealand (NZ) faces ethnic inequities with respect to breast cancer survival and treatment. This study establishes if there are ethnic differences in (i) type of surgery and (ii) receipt of radiotherapy (RT) following breast conserving surgery (BCS), among women with early-stage breast cancer in NZ. METHODS: This analysis used Te Rehita Mata Utaetae (Breast Cancer Foundation National Register), a prospectively maintained database of breast cancers from 2000 to 2020. Logistic regression models evaluated ethnic differences in type of surgery (mastectomy or BCS) and receipt of RT with sequential adjustment for potential contributing factors. Subgroup analyses by treatment facility type were undertaken. RESULTS: Of the 16,228 women included, 74% were NZ European (NZE), 10.3% were Maori, 9.4% were Asian and 6.2% were Pacific. Over one-third of women with BCS-eligible tumours received mastectomy. Asian women were more likely to receive mastectomy than NZE (OR 1.62; 95% CI 1.39, 1.90) as were wahine Maori in the public system (OR 1.21; 95% CI 1.02, 1.44) but not in the private system (OR 0.78; 95% CI 0.51, 1.21). In women undergoing BCS, compared to NZE, Pacific women overall and wahine Maori in the private system were, respectively, 36 and 38% less likely to receive RT (respective OR 0.64; 95% CI 0.50, 0.83 and 0.62; 95% CI 0.39, 0.98). CONCLUSION: A significant proportion of women with early-stage breast cancer underwent mastectomy and significant ethnic inequities exist. Recently developed NZ Quality Performance Indicators strongly encourage breast conservation and should facilitate more standardized and equitable surgical management of early-stage breast cancer.

A study of Samoan, Tongan, Cook Island Maori, and Niuean infant care practices in the Growing Up in New Zealand study.

BACKGROUND: Despite a low rate of infant mortality, Aotearoa New Zealand has a high rate of Sudden Unexpected Death in Infants (SUDI), with disproportionate impact for Pacific infants. This study explored the infant care practices, factors and relationships associated with increased risk of SUDI amongst Tongan, Samoan, Cook Islands Maori, and Niuean mothers in New Zealand, to inform evidence-based interventions for reducing the incidence of SUDI for Pacific families and their children. METHODS: Analysis comprised of data collected in 2009-2010 from 1089 Samoan, Tongan, Cook Islands Maori and Niuean mothers enrolled in the Growing Up in New Zealand longitudinal cohort study. The sleeping environment (bed-sharing and sleep position) of the infants was assessed at 6 weeks. Multivariable logistic regression analysis were conducted, controlling for sociodemographic factors to explore the association between selected maternal and pregnancy support and environment factors and the sleeping environment for infants. RESULTS: Mothers who converse in languages other than English at home, and mothers who consulted alternative practitioners were less likely to follow guidelines for infant sleeping position. Similarly language, smoking, alcohol, household dwelling, crowding and access to a family doctor or GP were associated with mothers following guidelines for bed-sharing. CONCLUSION: The impact of SUDI on Pacific infants may be lessened or prevented if communication about risk factors is more inclusive of diverse ethnic, cultural worldviews, and languages. Societal structural issues such as access to affordable housing is also important. This research suggests a need for more targeted or tailored interventions which promote safe sleeping and reduce rates of SUDI in a culturally respectful and meaningful way for Pasifika communities in Aotearoa, New Zealand.

Pacific patients' reasons for attending the emergency department of Counties Manukau for non-urgent conditions.

AIM: To determine Pacific patients' reasons for Emergency Department (ED) use for non-urgent conditions by Pacific people at Counties Manukau Health. METHODS: Patients who self-presented to Counties Manukau ED with a non-urgent condition in June 2019 were surveyed. Responses to open-ended questions were analysed using a general inductive approach, in discussion with key stakeholders. RESULTS: Of 353 participants with ethnicity reported, 139 (39%) were Pacific, 66 (19%) Maori and 148 (42%) were non-Maori non-Pacific, nMnP. A total of 58 (42%) of Pacific participants had been to their general practitioner prior to presenting to the ED; this proportion was similar for Maori (19 [30%]) and nMnP (59 [40%]) (p=0.215). The most common reasons for ED attendance among Pacific (as well as other) participants were 1) advice by a health professional (41%, 95% CI 33-50%), 2) usual care unavailable (28%, 20-36%), 3) symptoms not improving (21%, 14-28%), and 4) symptoms too severe to be managed elsewhere (19%, 12-26%). CONCLUSIONS: Multiple reasons underlie non-urgent use of EDs by Pacific and other ethnic groups. These reasons need to be considered simultaneously in the design, implementation, and evaluation of multi-dimensional initiatives that discourage non-urgent use of EDs to ensure that such initiatives are effective, equitable, and unintended consequences are avoided.

Priority Health Needs and Challenges in New Zealand Pacific Communities-A Qualitative Analysis of Healthcare Delivery during the COVID-19 Pandemic.

BACKGROUND: The Pacific community in New Zealand experienced an increased risk of COVID-19 transmission due to delayed contact tracing, along with a disproportionate prevalence of health challenges. The community is representative of a diverse population who proudly identify with the vibrant Pacific Island nations of Samoa, Tonga, Cook Islands, Niue, Fiji, etc. Pacific communities in New Zealand face a higher burden of health challenges compared to other groups. These challenges include obesity, high blood pressure, diabetes, mental health disorders, respiratory issues, smoking, excessive alcohol consumption, disabilities, and chronic conditions. Concerns were raised regarding the oversight of Pacific community views in the initial pandemic response planning. Pacific healthcare professionals expressed concerns about inadequate state support and the need for active involvement in decision making. METHODS: This article reports thematic analyses of text data gained from open-ended questions from a purposive anonymous online survey completed by Pacific healthcare professionals in New Zealand. RESULTS: The participants shared their experiences and opinions, which generated four major themes highlighting priority health needs and challenges. These themes included the necessity for a culturally appropriate healthcare plan, adequate resourcing, addressing discrimination, and emphasising a united and collaborative effort for consistency. The research's limitation is the narrow scope of open-ended questions in the questionnaire survey. However, conducting semi-structured face-to-face interviews can provide more in-depth data and offer further insights beyond the four broad themes identified in the analysis. CONCLUSIONS: The findings can inform the development of future research to provide more in-depth data and offer further insights beyond the four broad themes identified in the analysis. This will help develop future tailored healthcare delivery plans that address specific Pacific community needs.

Screening, diagnosing and management of Pacific peoples with prediabetes in New Zealand primary healthcare clinics with high concentrations of Pacific peoples: an online survey.

Introduction Prediabetes is a condition of elevated blood sugar levels which can increase the risk of type 2 diabetes (T2D) if not managed effectively. Prediabetes is likely to affect about 24.6% of New Zealand (NZ) adults, with estimates of 29% of the Pacific population currently living with the condition. A prediabetes diagnosis is an opportunity for intervention from trusted primary care providers. The study aim was to describe primary healthcare clinician's knowledge and practice regarding screening, diagnosing and management of prediabetes in Pacific patients. Methods An online survey was conducted with current practicing primary healthcare clinicians between February and April 2021. Eligible participants included clinicians employed in a primary healthcare clinic with over 50% of enrolled patients identified as Pacific. Results Primary healthcare clinicians (n = 30) reported that their prediabetes screening, diagnosis and management were aligned with the NZ Ministry of Health clinical guidelines. The most common factors that prompted screening was a family history of T2D (25/30, 83%), ethnicity (24/30, 80%) weight and BMI (24/30, 80%). The initial management practices involved providing recommendations for dietary changes and physical activity (28/30, 93%) and referring patients to a diabetes prevention lifestyle change programme (16/30, 53%). Discussion Primary healthcare clinicians are the foremost point of engagement with patients and their famili (family) in their health journey. Culturally appropriate tools could be useful to assist healthcare providers to communicate to a higher risk population and most clinicians rely on up to date guidelines for screening and management.

Diabetes in the Cook Islands: a clinical audit.

Introduction The global burden of diabetes mellitus (diabetes) is significant and of increasing concern with more pregnant women being diagnosed with gestational diabetes mellitus (GDM). The Cook Islands face mounting pressures to address diabetes alongside competing population health needs and priorities. Cook Islands residents frequently travel to New Zealand to access health services. Inadequate information systems also make it difficult for countries to prioritise preventative measures for investment. In the absence of good data to inform effective diabetes preventative and treatment measures, people with diabetes are likely to progress to complications which will burden society and health systems in the Cook Islands and New Zealand. Aim To determine the prevalence of diabetes and prediabetes, and incidence of GDM, in the Cook Islands. Methods We analysed two Te Marae Ora Cook Islands Ministry of Health datasets, the Non-Communicable Diseases (NCD) register examining demographic data for the period 1967 to December 2018 and same for the GDM register from January 2009 to December 2018. Results Of the 1270 diabetes cases, 53% were female and half were aged 45-64 years. There were 54 pre-diabetes cases and 146 GDM. Of the 20 GDM cases who developed type 2 diabetes, 80% were diagnosed before the age of 40 years. Data quality was poor. Discussion The Cook Islands diabetes registers provide important data to inform priorities for diabetes-related preventative and treatment measures. A data analyst has been employed to ensure quality, regularly audited data and information systems.

Ear and hearing health in Niue: a qualitative study on the worldviews, knowledge, beliefs and use of health care.

Introduction Hearing is a primary sense that facilitates the development of spoken language, social connection and an appreciation of sounds within the natural world. Hearing loss has multiple adverse effects across the life course. Understanding the worldviews of ear and hearing health in Pacific peoples is crucial to inform responsive and appropriate hearing health and primary healthcare services. Aim To understand the worldviews, knowledge and beliefs held by the Niuean community in Niue towards ear and hearing health, and the use of healthcare methods to contribute to service development. Methods Twenty semi-structured interviews were conducted with Niuean community members. Interviews were audio-recorded, transcribed verbatim, and analysed using thematic analysis methods. Results Niuean people value hearing health as an important way to communicate and connect with each other. They are proactive health seekers, have good knowledge about ear disease and hearing health and use mainstream medicines alongside spiritual practices and traditional remedies to maintain good ear and hearing health. The hospital system is responsive and accessible to the community's needs, contrasting with Pacific people's access to hearing health services in New Zealand. Discussion There is a high level of awareness of the importance of hearing health amongst the Niuean community and good accessibility and utilisation of healthcare services. There is potential to implement locally focused ear and hearing health strategies in Niue and conduct hearing health research among the New Zealand-based Niuean community to improve primary healthcare services delivery.

Revised Guidelines for smoking cessation in New Zealand, 2021.

AIMS: To summarise the literature underpinning key recommendations made in the 2021 revision of the Ministry of Health's New Zealand Guidelines for Helping People to Stop Smoking. METHODS: A comprehensive literature review of smoking cessation interventions was undertaken in July 2021. Recommendations were formulated from the findings of the literature review and expert advice. RESULTS: Healthcare professionals should ask and briefly advise all people who smoke to stop smoking, regardless of whether they say they are ready to stop smoking or not. They should offer smoking cessation support, which includes both behavioural and pharmacological (e.g., nicotine replacement therapy, nortriptyline, bupropion or varenicline) interventions. The Guidelines also include advice around the use of vaping in smoking cessation. Recommendations are also formulated for priority populations of smokers: Maori, Pacific, pregnant women, and people with mental illness and other addictions. CONCLUSIONS: The guidelines will assist healthcare professionals in providing evidence-based smoking cessation support to people who smoke. To be effective and equitable, the ABC model requires organisational commitment, integration into routine practice, and increased attention to the upstream determinants of smoking and quitting.

Adapting an Evidence-Based e-Learning Cognitive Behavioral Therapy Program Into a Mobile App for People Experiencing Gambling-Related Problems: Formative Study.

BACKGROUND: Many people who experience harm and problems from gambling do not seek treatment from gambling treatment services because of personal and resource barriers. Mobile health (mHealth) interventions are widely used across diverse health care areas and populations. However, there are few in the gambling harm field, despite their potential as an additional modality for delivering treatment and support. OBJECTIVE: This study aims to understand the needs, preferences, and priorities of people experiencing gambling harms and who are potential end users of a cognitive behavioral therapy mHealth intervention to inform design, features, and functions. METHODS: Drawing on a mixed methods approach, we used creators and domain experts to review the GAMBLINGLESS web-based program and convert it into an mHealth prototype. Each module was reviewed against the original evidence base to maintain its intended fidelity and conceptual integrity. Early wireframes, design ideas (look, feel, and function), and content examples were developed to initiate discussions with end users. Using a cocreation process with a young adult, a Maori, and a Pasifika peoples group, all with experiences of problem or harmful gambling, we undertook 6 focus groups: 2 cycles per group. In each focus group, participants identified preferences, features, and functions for inclusion in the final design and content of the mHealth intervention. RESULTS: Over 3 months, the GAMBLINGLESS web-based intervention was reviewed and remapped from 4 modules to 6. This revised program is based on the principles underpinning the transtheoretical model, in which it is recognized that some end users will be more ready to change than others. Change is a process that unfolds over time, and a nonlinear progression is common. Different intervention pathways were identified to reflect the end users' stage of change. In all, 2 cycles of focus groups were then conducted, with 30 unique participants (13 Maori, 9 Pasifika, and 8 young adults) in the first session and 18 participants (7 Maori, 6 Pasifika, and 5 young adults) in the second session. Prototype examples demonstrably reflected the focus group discussions and ideas, and the features, functions, and designs of the Manaaki app were finalized. Attributes such as personalization, cultural relevance, and positive framing were identified as the key. Congruence of the final app attributes with the conceptual frameworks of the original program was also confirmed. CONCLUSIONS: Those who experience gambling harms may not seek help. Developing and demonstrating the effectiveness of new modalities to provide treatment and support are required. mHealth has the potential to deliver interventions directly to the end user. Weaving the underpinning theory and existing evidence of effective treatment with end-user input into the design and development of mHealth interventions does not guarantee success. However, it provides a foundation for framing the intervention's mechanism, context, and content, and arguably provides a greater chance of demonstrating effectiveness.

A qualitative study of patient perspectives of diabetes and diabetic retinopathy services in Vanuatu.

ISSUE ADDRESSED: Diabetes mellitus is an increasing global health problem, particularly in Vanuatu, where it poses a major health burden. There is paucity of information on how patients in Vanuatu perceive diabetes, diabetic retinopathy, access to services and management, health promotion and intervention services to alleviate the issues. This study aimed to explore the perceptions of diabetic patients in Vanuatu on these issues, to help inform the design of health promotion materials and community activities to empower people to self-manage and shape diabetic services that are integrated and people-centred. METHODS: Qualitative Talanga and Kakala Pacific research methodologies were applied. Participants were diabetic patients from both urban locations and rural villages in Vanuatu. Data were collected from four (two male, two female) focus group interviews and thematically analysed. RESULTS: There were 26 participants. System failures became apparent, including the inability of the health care services to meet the complex needs of patients with diabetes. The protective factors to reduce the risk and increasing incidence of diabetes and diabetic retinopathy included comprehensive village-based health promotion and community development programmes at the primary prevention level. CONCLUSION: This study described patients' experiences of their diabetic care and identified key barriers and facilitators of service delivery pathways. SO WHAT?: Vanuatu needs to expand nationwide health promotion and education programmes on nutrition and exercise, food insecurity and access through trade agreements and provide well-trained nursing and medical specialists for early diagnosis and adequate management of diabetes that all people can access and afford.

Takore i te Kai Ava'ava (Quit smoking), a mCessation Program Adapted for the Cook Islands: Indicators of Potential for Tobacco Control.

Mobile phone-based smoking cessation interventions (mCessation) are an established evidence-based intervention designed to support smokers to quit. Evidence of impact to date is modestly positive but skewed in favor of high-resourced countries, with less evidence of value added to low-resourced settings. Takore i te Kai Ava'ava, a text message-based smoking cessation program, was delivered to smokers living on the island of Rarotonga in 2019. Eighty-eight smokers consented to take part. Participants completed a baseline questionnaire about current smoking behavior and previous quit attempts; follow-up measures at 2 months assess quit attempts feedback on the program. Thirty-two people completed the follow-up interviews; 10 (31%) had not smoked in the past 7 days, 23 (72%) reported a serious quit attempt, and 29 (91%) felt the program was effective for the Cook Islands. Takore i te Kai Ava'ava was deemed to be highly acceptable and potentially cost-effective.

Experiences of New Zealand Haemodialysis Patients in Relation to Food and Nutrition Management: A Qualitative Study.

People receiving haemodialysis have considerable and complex dietary and healthcare needs, including co-morbidities. A recent New Zealand study has shown that few patients on haemodialysis are able to meet nutritional requirements for haemodialysis. This study aims to describe the perspectives and experiences of dietary management among patients on haemodialysis in New Zealand. This exploratory qualitative study used in-depth semi-structured interviews. Purposive sampling was used to recruit participants from different ethnic groups. Forty interviews were conducted, audio-recorded and transcribed verbatim. An inductive approach was taken using thematic analysis. Forty participants were interviewed. Participants spoke of major disruption to their lives as a result of their chronic kidney disease and being on haemodialysis, including loss of employment, financial challenges, loss of independence, social isolation and increased reliance on extended family. Most had received adequate dietary information, although some felt that more culturally appropriate support would have enabled a healthier diet. These findings show that further support to make the recommended dietary changes while on haemodialysis should focus on socio-cultural factors, in addition to the information already provided.

Pacific peoples and alcohol: a review of the literature.

AIM: To present a review of recent research exploring alcohol use by Pacific peoples in New Zealand. The review builds on a comprehensive narrative review of research and literature on Pacific peoples and alcohol use, Pearls Unlimited (2009). METHOD: We conducted a scoping review of published and grey literature written and published between 2009 and 2019. Research was included if the study population, or a clearly identified subgroup of the study population, included one or more Pacific ethnicities and addressed alcohol use. RESULTS: There were 30 relevant articles covering a large range of aspects of alcohol consumption by Pacific youth and adults. Alcohol consumption by Pacific men has declined significantly to 60% from 70% in 2006/07. However, of those who consume alcohol, 46% meet the threshold for hazardous consumption. Alcohol consumption by Pacific youth has also declined. CONCLUSION: While there has been some notable research and in-depth exploration of alcohol use and Pacific people, persistent inequity in hazardous alcohol consumption indicates that an evaluation of the current interventions to prevent and service unmet needs of Pacific peoples are overdue.

Patient Perspectives of Diabetes and Diabetic Retinopathy Services in Kiribati: A Qualitative Study.

Diabetes mellitus is an increasing global health problem affecting millions of people worldwide, especially true in the Republic of Kiribati, with >20% of adults suffering from type 2 diabetes, and the prevalence is rising. Information on I-Kiribati patients' understanding of diabetes and perception of access to relevant services is sparse. This study explores patient perspectives on their condition and its management using Talanga and Kakala Pacific research methodologies. Data were collected from Kiribati patients in four focus group interviews. Key themes to emerge were knowledge about diabetes, understanding and accessing the health care system, making lifestyle changes, and suggestions for improvement. Health system failures to meet the complex health care needs of these patients and health care services gaps are apparent. Improvements suggested include a comprehensive village-based health promotion and community development program focusing on youth and schools from early childhood and onward, increase in the skilled workforce, and an integrated approach to service delivery.

A qualitative study of the role of Samoan Church ministers in health literacy messages and health promotion in Auckland, New Zealand.

OBJECTIVE: Health promotion and health literacy activities within church congregations are not a new concept; however, this has not yet been widely researched in New Zealand. This paper explores the views of Samoan Methodist Church ministers about health-related issues and their role in health promotion and health literacy in their churches. METHODS: This was a qualitative research study with Samoan Methodist Church ministers from Auckland, New Zealand. Ten participants were interviewed face-to-face using a semi-structured approach. A general inductive approach for analysis of qualitative data was utilised. Ethics approval was granted by the University of Auckland Human Participants Ethics Committee. RESULTS: All of the church ministers described a holistic view of health and had a sense of responsibility for the holistic wellbeing of their members. Culture was seen as the main barrier to good health. Most of the ministers identified their role in health promotion as being associated with an external health provider. CONCLUSION: Church ministers are well-respected leaders in the Samoan Church, which helps them play an important role in communicating health-promoting messages and encouraging healthy behaviours. The elders and chiefs are recognised as the cultural leaders in the church; without their support, the cultural barriers to health will be difficult to overcome. Implications for public health: Church ministers are important in health literacy messages and health promotion.

Betel Nut Use in Vanuatu: Investigating Opportunities to Reduce Harms to Health.

Background: Betel nut chewing is a public health concern in the Asia-Pacific region and is an emerging issue in Vanuatu. Despite the significant health risks associated with betel nut chewing, few interventions have been undertaken to reduce its harm. Objectives: To investigate betel nut use in Vanuatu and to identify opportunities to reduce its harm and possible interventions, framing the responses using the World Health Organization's MPOWER tobacco control model. Method: Qualitative research design, in the form of semi-structured interviews with ten participants with expertise in health, agriculture, education or non-communicable disease in Port Vila, Vanuatu during June 2017. Recorded interviews were transcribed verbatim, and a general inductive approach was used to identify key themes. Results: Participants reported a recent increase in betel nut use in Vanuatu due to the influence from Papua New Guinea and the Solomon Islands. To reduce the harm of betel nut use in Vanuatu, participants suggested policies and strategies that aligned with the MPOWER framework that could be adopted for betel nut control, including restricting cultivation and sale of betel nut in Vanuatu and using radio and existing community networks to reach people with messages about the dangers of betel nut use. Conclusion: Betel nut use may be growing in popularity in Vanuatu, where there are potential policy options to minimize harm. The MPOWER model for tobacco control may be a useful framework to help the Vanuatu government to deliver a comprehensive approach to reducing harm from betel nut use.

E-learning: A Tool to Upgrade the Skills of Health Workers to Address Betel Quid and Areca Nut Chewing.

Background: In the Asia-Pacific region, betel quid and areca nut chewing is a public health concern that requires immediate attention. There is a need to improve knowledge about the harmful effects of betel quid and areca nut chewing and train health care professionals to provide preventive interventions. Objectives: To introduce and evaluate the Pacific Open Learning Health Net (POLHN) online courses about the dangers of betel quid and areca nut. Methods: Two self-paced courses about betel quid and areca nut chewing were developed and offered via the POLHN which predominantly engages health professional working in the Pacific islands. Students completing each of the courses were asked to complete a survey measuring course organization, content, length and comprehension level, evaluation methods, adaption to the Pacific island context, relevance to work and level of interaction. Conclusions: The POLHN courses about the dangers of betel quid and areca nut were well accepted by participants for quality and relevancy to their work. POLHN is the first platform that offers a course in betel quid and areca nut in the Pacific and has the potential to be adopted elsewhere.

Falling into a deep dark hole: Tongan people's perceptions of being at risk of developing type 2 diabetes.

BACKGROUND: Prediabetes is a precursor for type 2 diabetes. Compared to the New Zealand/European and other population groups (24.6%), the prevalence of prediabetes is higher within Pacific groups (29.8%). The diagnosis of prediabetes presents a potential opportunity to intervene to prevent progression to type 2 diabetes. OBJECTIVE: To develop an understanding of how being 'at risk' of developing type 2 diabetes is perceived by Tongan people with prediabetes living in Auckland, New Zealand. METHODS: The Kakala and Talanga Tongan methodologies underpinned this study. Twelve one-on-one, semi-structured interviews with Tongan patients who had prediabetes from a primary health-care clinic in Auckland, New Zealand, were conducted. Thematic analysis was used to identify recurrent themes from the data. RESULTS: Participants were not aware of their prediabetes diagnosis, emotions associated with the diagnosis reflected fear and disbelief and a perception of imminent danger. Family history informed perceptions of the risk of developing type 2 diabetes. Participants could not differentiate prediabetes from type 2 diabetes, and recollections of being 'back in the Islands' of Tonga were consistent with healthy lifestyles. CONCLUSIONS: Prediabetes appeared to be poorly understood and was believed to be irreversible, which could discourage behaviour change, social and physical improvements in health. Appropriate culturally tailored messages to accompany a prediabetes diagnosis, including cause and management, would be beneficial for Pacific peoples.

Health literacy of Samoan mothers and their experiences with health professionals.

INTRODUCTION Patient and health professional engagement is a crucial factor for the effectiveness of service delivery and the management of care. Low health literacy amongst Pacific peoples is likely to affect their engagement with health professionals. AIM To explore the health literacy of Samoan mothers and their experiences with health professionals in primary care. METHODS Twenty Samoan mothers and caregivers living in Auckland were interviewed about their experiences when engaging with health professionals. Semi-structured interviews guided by open-ended questions were conducted with individual participants in either Samoan or English. The interviews were recorded, transcribed and analysed. RESULTS A key finding was the significance of the health professionals' role, in particular general practitioners, in providing resources and information to participants. Many participants recognised their general practitioner as their primary source of information. The findings revealed the negative experiences participants faced while engaging with general practitioners and shared how this affected their ability to manage care. Themes about enablers of open communication with health professionals included mothers understanding their rights as patients and being acknowledged as an expert on their child's health. Themes about barriers to open communication with health professionals included limited consultation time, language barriers, medical jargon, closed answers, power relations and the shame associated with not fully understanding. DISCUSSION This research can inform health care engagement practices with patients. This study is relevant to health-care providers, development of health resources, health researchers evaluating health-care communications between providers and patients, to inform culturally appropriate and effective health-care delivery. The importance of shared responsibility in addressing issues of health literacy is noted, shifting the focus to everyone involved in providing and receiving information and in making decisions and managing care.