In safe hands: child health data storage, linkage and consent for use.

While there is potential for societal benefit from linkage and integration of large datasets, there are gaps in our understanding of the implications for children and young people, and limited inclusion of their views within this discourse. We aimed to understand the views and expectations of children, young people and their parents/caregivers in Aotearoa New Zealand regarding child health data storage, linkage and consent for use. This qualitative study included 24 Maori and non-Maori children, young people and their families across five focus groups, recruited from a community-based health service. A mixed Maori and non-Maori research team facilitated participant recruitment and data collection. Child, adolescent and parent/caregiver groups were held separately. Sessions were audio-recorded and the verbatim transcripts were analysed thematically. We identified three themes: (i) I am more than a number: seeing patients as people; (ii) In safe hands: data as power; and (iii) What are your intentions with my data? Consent as an active relationship. A key challenge was the reductive and stigmatizing potential of data integration for minoritised groups. Hypothetical discussions of data sharing and linkage were contingent on trust between the participant and the health professional, with negotiated data ownership. Consent was conceived as an active relationship needing renewal and renegotiation as children reached adulthood. Current consent processes for ongoing use of child data require further deliberation. Without a strong ethical and child rights-based approach to issues of child health data management, consent and linkage, we risk exacerbating health inequities and experiences of breach of trust.

"It's more personal if you can have that contact with a person": Qualitative study of health information preferences of parents and caregivers of children with obesity in New Zealand.

The objective of this study was to understand how participants referred to a childhood obesity intervention programme prefer to receive health information, and secondly, to determine acceptability of digital technologies such as a social media platform or IT application for programme engagement. This study includes a subset of interviews (n = 64) of a wider study of the barriers and facilitators of engagement in a multidisciplinary healthy lifestyle programme for childhood obesity, based in Taranaki, Aotearoa/New Zealand. The topics of health information and social media and/or app use were covered in 53 and 30 interviews, respectively. Participants were parents and caregivers of children and adolescents referred to the programme, and interviews were mostly conducted in family homes. Findings showed that participants consulted a range of people, places and resources for information about their health, notably the internet, health professionals, and family and friends. Participants reported using the internet to complement or supplement information from health professionals. A strong relationship with health professionals built on trust was important. Use of digital technologies such as an IT application or social media platform for engagement with the programme was generally acceptable, with the caveat that this did not replace face-to-face communication with their primary care provider. In conclusion, the high usage of digital sources of health information requires accurate and reliable information. Digital technologies such as IT applications or social media platforms may have a role in terms of supplementing the patient journey; however, the importance of in-person communication and an ongoing relationship with a health professional or practice remains paramount.

Health system barriers to accessing care for children with weight issues in New Zealand: An interview-based study.

OBJECTIVE: To identify barriers created and maintained by the health system affecting engagement in a family-based multidisciplinary healthy lifestyle programme for children and adolescents in New Zealand. METHODS: We conducted 64 semi-structured interviews with participants of the programme (n = 71) with varying levels of engagement, including those who declined contact after their referral. Half the interviews were with families with Maori children, allowing for appropriate representation. Interviews were analysed using thematic analysis. RESULTS: Five health system factors affecting engagement were identified: the national policy environment, funding constraints, lack of coordination between services, difficulty navigating the health system, and the cost of primary health care. CONCLUSIONS: Engaging with a health system that creates and maintains substantial barriers to accessing services is difficult, affecting programme engagement, even where service-level barriers have been minimised. Lack of access remains a crucial barrier to improved health outcomes for children and their families experiencing childhood obesity in New Zealand. There is a need for comprehensive approaches that are accompanied by a clear implementation strategy and coordinated across sectors.

A Collaborative Indigenous-non-Indigenous Partnership Approach to Understanding Participant Experiences of a Community-Based Healthy Lifestyles Program.

We describe the approach of an Indigenous-non-Indigenous research partnership in the context of a qualitative study which aimed to understand barriers and facilitators to engagement in a community-based healthy lifestyles program in Aotearoa/New Zealand. Informed by Kaupapa Maori research principles and by "Community-Up" research values, this collaborative approach between the mixed Maori-non-Maori research team effectively engaged with Maori and non-Maori families for in-depth interviews on participant experience, including with non-service users. "Community-Up" research principles allowed for a respectful process which upheld the mana (status, dignity) of the interview participants and the research team. Challenges included maintaining flexibility in our conceptions of ethnicity to reflect the complexity of modern family life in Aotearoa/New Zealand. We were committed to ongoing communication, awareness, and attention to the relationships that formed the basis of our research partnership, which allowed effective navigation of challenges and was critical to the study's success.

What affects programme engagement for Maori families? A qualitative study of a family-based, multidisciplinary healthy lifestyle programme for children and adolescents.

AIM: It is important that intervention programmes are accessible and acceptable for groups most affected by excess weight. This study aimed to understand the barriers to and facilitators of engagement for Maori in a community-based, assessment-and-intervention healthy lifestyle programme (Whanau Pakari). METHODS: Sixty-four in-depth, home-based interviews were conducted with past service users. Half of these were with families with Maori children and half with non-Maori families. The interviews were thematically analysed with peer debriefing for validity. RESULTS: Maori families experienced barriers due to racism throughout the health system and society, which then affected their ability to engage with the programme. Key barriers included the institutionalised racism evident through substantial structural barriers and socio-economic challenges, the experience of interpersonal racism and its cumulative impact with weight stigma, and internalised racism and beliefs of biological determinism. Responses to these barriers were distrust of health services, followed by renewed engagement or complete disengagement. Participants identified culturally appropriate care as that which was compassionate, respectful, and focused on relationship building. CONCLUSIONS: While Whanau Pakari is considered appropriate due to the approach of the delivery team, this is insufficient to retain some Maori families who face increased socio-economic and structural barriers. Past instances of weight stigma and racism have enduring effects when re-engaging with future health services, and inequities are likely to persist until these issues are addressed within the health system and wider society.

Challenges of making healthy lifestyle changes for families in Aotearoa/New Zealand.

OBJECTIVE: The objective of the current study was to identify challenges of making and sustaining healthy lifestyle changes for families with children/adolescents affected by obesity, who were referred to a multicomponent healthy lifestyle assessment and intervention programme in Aotearoa/New Zealand (NZ). DESIGN: Secondary qualitative analysis of semi-structured interviews. SETTING: Taranaki region of Aotearoa/NZ. PARTICIPANTS: Thirty-eight interviews with parents/caregivers (n 42) of children/adolescents who had previously been referred to a family-focused multidisciplinary programme for childhood obesity intervention, who identified challenges of making healthy lifestyle changes. Participants had varying levels of engagement, including those who declined contact after their referral. RESULTS: Participant-identified challenges included financial cost, impact of the food environment, time pressures, stress, maintaining consistency across households, independence in adolescence, concern for mental health and frustration when not seeing changes in weight status. CONCLUSIONS: Participants recognised a range of factors that contributed towards their ability to make and sustain change, including factors at the wider socio-environmental level beyond their immediate control. Even with the support of a multidisciplinary healthy lifestyle programme, participants found it difficult to make sustained changes within an obesogenic environment. Healthy lifestyle intervention programmes and families' abilities to make and sustain changes require alignment of prevention efforts, focusing on policy changes to improve the food environment and eliminate structural inequities.

Determining barriers and facilitators to engagement for families in a family-based, multicomponent healthy lifestyles intervention for children and adolescents: a qualitative study.

OBJECTIVES: Recruitment and retention in child and adolescent healthy lifestyle intervention services for childhood obesity is challenging, and inequalities across social groups are persistent. This study aimed to understand the barriers and facilitators to engagement in a multicomponent assessment-and-intervention healthy lifestyle programme for children and their families, based in the home and community. DESIGN: Qualitative interview-based study of past users (n=76) of a family-based multicomponent healthy lifestyle programme in a mixed urban-rural region of New Zealand. Semistructured, home-based interviews were conducted and thematically analysed with peer debriefing for validity. PARTICIPANTS: Families were selected through stratified random sampling to include a range of levels of engagement, including those who declined their referral, with equal numbers of interviews with Indigenous and non-Indigenous families. RESULTS: Three interactive and compounding determinants were identified as influencing engagement in Whanau Pakari: acute and chronic life stressors, societal norms of weight and body size and historical experiences of healthcare. These determinants were present across societal, system and healthcare service levels. A negative referral experience to Whanau Pakari often resulted in participants declining further input or disengaging from the programme. A fourth domain, respectful and compassionate healthcare, was identified as a mitigator of these three themes, facilitating participant engagement despite previous negative experiences. CONCLUSIONS: While participant engagement in healthy lifestyle programmes is affected by determinants which appear to operate outside immediate service provision, the programme is an opportunity to acknowledge past instances of stigma and the wider challenges of healthy lifestyle change. The experience of the referral to Whanau Pakari is important for setting the scene for future engagement in the programme. Respectful, compassionate care is critical to enhanced retention in multidisciplinary healthy lifestyle programmes and ongoing engagement in healthcare services overall.