Autism community priorities in diverse low-resource settings: A country-wide scoping exercise in India.

LAY ABSTRACT: It is vital to directly engage with the autism community in order to develop better services and drive the research agenda. While some studies in high-income countries have mapped the priorities of the autism community, there is a severe dearth of such efforts in the global south. Five million autistic individuals are estimated to live in India alone, and there has been little effort to map their priorities. Moreover, studies in high-income countries focused largely on research priorities, and not so much on skills training and interventions. Keeping these needs in mind, we conducted an online survey followed by an in-depth conversation with parents of autistic children and autistic adults drawn from across India. We found that the respondents reported self-help skills to be the most important for training, as they considered it fundamental for every other aspect of life. Speech and language therapy was considered to be the highest intervention priority for this group, highlighting the importance of social communication. Mental health counselling was also considered to be a high priority, but several parents identified it as being more relevant for themselves rather than for their children. Within research, the topmost priority was to understand ways in which the community can better support autistic people. We hope that these findings will help researchers, policymakers and service providers to be able to make well-informed decisions, develop relevant services and shape future research.

Impact of COVID-19 on the Health Response to Family Violence in Aotearoa New Zealand: A Qualitative Study.

COVID-19 pandemic planning and response has resulted in unprecedented upheaval within health systems internationally. With a concern for increasing frequency and escalation of family violence, the so called "shadow pandemic," we wondered how health system violence intervention programs were operating during this time. In Aotearoa New Zealand, the Ministry of Health Violence Intervention Program (VIP), using a systems approach, seeks to reduce and prevent the health impacts of family violence and abuse through early identification, assessment, and referral of victims presenting to designated health services. In this qualitative descriptive study, we explored how the VIP program was impacted during the first year of the COVID-19 pandemic. Forty-one VIP coordinators and managers representing 15 of the 20 New Zealand District Health Boards and the National VIP Team participated. Across 12 focus groups (8 face to face and 4 via Zoom) and 7 individual interviews (all via Zoom) participants shared their experience navigating systems to support frontline health providers' responsiveness to people impacted by family violence during the pandemic. In our reflexive thematic analysis, we generated 3 themes: Responding to the moment, valuing relationships, and reflecting on the status quo. Our findings demonstrate the dynamic environment in which participants found creative ways to adapt to the uncertainty and engage with communities to re-shape interventions and ensure continued implementation of the program. At the same time, challenges within the system prior to the pandemic were brought into view and highlighted the need for action. These included, for example, the need for improved engagement with Maori (Indigenous people of Aotearoa New Zealand) to address long-standing health inequities. Having quality essential services for those impacted by family violence that engages with local knowledge and networks and routinely copes with uncertainty will strengthen our systems to minimize risk of harm during emergencies.

From individual behaviour strategies to sustainable food systems: Countering the obesity and non communicable diseases epidemic in New Zealand.

New Zealand is currently facing an obesity and non communicable diseases (NCDs) epidemic. Recent studies have largely attributed these health issues to insufficient food and low-quality diets that cause micronutrient deficiencies. Improving healthy diets requires broader thinking and collaboration, particularly around maintaining sustainable food systems, which signifies a shift from individualistic/behavioural approaches in health promotion. This paper aims to extend solutions addressing increasing rates of obesity and diet-related NCDs in New Zealand while considering diet and human health in concurrence with sustainability. In particular, the three pillars of sustainability-economic, environmental, and social-will be considered, alongside application of a food systems approach to analysing the epidemic and policy developments in New Zealand. Given its proximity to smaller Pacific islands in the region, New Zealand is in a unique position to work multisectorally and be a leader in considering food system approaches to tackling obesity and NCDs in the Pacific.

Fijian youth entrepreneurs: championing health through sustainable food systems.

The health of Pacific people is known to be at risk because of the onset of non-communicable diseases (NCDs), such as diabetes. The scale of the problem requires innovative approaches to bring about change. One such approach is the development of a sustainable food system in combination with the leadership of Pacific youth. This study sought to engage Pacific youth as part of the solution to reducing NCDs through social enterprise and championing of sustainable food systems. Four young Fijian vegetable and fruit entrepreneurs shared their stories as part of a participatory action research of Talanoa/storytelling, with social media workshops, networking and promotional opportunities. Findings revealed that youth entrepreneurs are passionate about food and health, family and tradition; some are already food influencers and champions and they are keen to grow their businesses. Yet, there is limited support for small business development with a social purpose and youth-led campaigns. The study indicates a growing potential to develop local youth-led social entrepreneurship and innovation to address NCDs in exciting new ways. There is an urgent need to support innovation interventions to advocate for sustainable food systems for the Pacific, that promote positive human health needs and address, more broadly, climate change effects.

Registered nurses' perceptions and experiences of autonomy: a descriptive phenomenological study.

BACKGROUND: Professional autonomy is a key concept in understanding nurses' roles in delivering patient care. Recent research exploring the role of autonomy in the nursing work environment indicated that English and American nurses had differing perceptions of autonomy. This qualitative study aimed to explore the understanding and experiences of autonomy of nurses working in England. METHODS: A descriptive phenomenological analysis of data from 48 semi-structured interviews with registered nurses from two National Health Service (NHS) hospitals (purposive sample) was used to explore the concept of autonomy. RESULTS: Six themes were identified: working independently; working in a team; having professional skills and knowledge; involvement in autonomy; boundaries around autonomy; and developing autonomy requires support. A key finding was that nurses related autonomy to their clinical work and to the immediate work environment of their ward, rather than to a wider professional context. Nurses also perceived that autonomy could be turned off and on rather than comprising an integrated aspect of nursing. CONCLUSIONS: Findings suggest that nurses in England, as framed by the sample, had a local ward-focused view of autonomy in comparison to nurses in America, who were reported to relate autonomy to a wider involvement in hospital level committees. Findings further indicate that autonomy was practiced occasionally, rather than incorporated into practice. Findings highlight the need for nurses in England to adopt a broader perspective and actively contribute to writing hospital guidelines and policies that recognise the importance of autonomy to nurse training and practice.

The nursing work environment and quality of care: Content analysis of comments made by registered nurses responding to the Essentials of Magnetism II scale.

AIM: To report a qualitative study of themes Registered Nurses raised spontaneously about their work environment, in a cross-sectional survey study when responding to the Essentials of Magnetism II (EOMII) scale. DESIGN: Qualitative descriptive survey. METHODS: At the end of the EOMII scale, a free form text section was included asking nurses to add comments about their ward/work environment. Of the 247 nurses who completed the EOMII scale, 30% (N = 75) provided comments. Inductive content analysis was used to analyse the textual information generated. RESULTS: Three key themes emerged: "nurses need nurses to nurse"; working as a team and workplace environment. Participants described issues they were facing which comprised high turnover rates, inadequate staffing levels, increasing workload and high stress levels. Particular attention was drawn to the role of the ward manager in promoting a positive work environment, good teamwork and quality patient care.

Strengthening Community: Older Asian Immigrants' Contributions to New Zealand Society.

This study sought to uncover the process through which older Chinese, Indian and Korean immigrants residing in Auckland, New Zealand contribute to, and participate in, local community. There is a paucity of literature addressing the everyday activities of older Asian immigrants living in New Zealand. The few studies that do exist focus solely on one ethnic group with little discussion of how community participation occurs. Grounded theory methodology was employed. Focus groups and individual interviews with 76 Chinese, Indian or Korean older immigrants were recorded, transcribed, translated, and analysed using grounded theory methods of dimensional analysis to develop a theory of participation. Older Asian immigrants contribute to society through a process of Strengthening Community; comprising three perspectives: Advancing Cultural Connectedness, Giving Service and Caring for Family. Each perspective is mediated by conditions and strategies that facilitate when and how participants engage in their chosen activities. Older Asian immigrants are active social contributors to New Zealand communities. Although they encounter barriers to participation, they constantly seek ways to work individually and in community groups to effectively contribute to civic society. In doing so, they take pride in giving back to their host country.

Strengthening participation by young women sex workers in HIV programs: reflections on a study from Bangkok, Thailand.

BACKGROUND: Participation is an accepted means of increasing the effectiveness of public health programs, and as such, it is considered an important component of HIV interventions targeting at-risk youth. The situation of young women sex workers in Thailand is alarming on many fronts, including that of HIV risk. As a result, HIV programs in Thailand are the key interventions undertaken in relation to young women sex workers' health. A small-scale study used semistructured interviews to explore the participation reports of five young women sex workers, as well as the related views of two community support workers, who lived and worked in Bangkok, Thailand. DISCUSSION: This study is considered in the light of current research on - as well as new opportunities and challenges offered for - participation by vulnerable groups in the context of digital society. Thematic analysis of the interview data identified barriers to participation, including the illegality of sex work, fear, and lack of trust of the authorities, as well as widespread social stigma. Such barriers resulted in young women seeking anonymity. Yet, promisingly, young women positioned themselves as experts; they are involved in peer education and are supportive of greater involvement in HIV programs, such as further educational initiatives and collective actions. CONCLUSION: There is a need for a more empowerment-oriented participation practice positioning young women sex workers as expert educators and codecision makers within a model of participation that is also accountable, such as including young women as members of program boards. Beyond current norms, there are new opportunities emerging because of the increasing availability of smartphone/Internet technology. These can support activist and codesign participation by young women sex workers in HIV programs. However, any developments in participation must maximize opportunities carefully, taking into consideration the difficult social environment faced by young women sex workers as well as the need for strategies to address illegality and stigma.

Vulnerable Youth as Prosumers in HIV Prevention: Studies Using Participatory Action Research.

BACKGROUND: Stigma, voicelessness, and legislative and rights barriers, coupled with top-down decision making, are the common experiences of vulnerable youth populations that limit their opportunities to participate in vital health promotion efforts such as HIV prevention. OBJECTIVE: To consider new opportunities arising from a digital society for youth to creatively shape HIV prevention. METHODS: Drawing on research with vulnerable youth in Busoga, Uganda; Bulawayo, Zimbabwe; Bangkok, Thailand; and Bali, Indonesia, we explore current youth participation, in theory and practice, while considering new opportunities arising from a digital society for youth to creatively shape HIV prevention. RESULTS: Collaborative commons and prosumer models are defined as people employing new technology to codesign toward a common goal. Within the context of a diminishing role of the traditional institution and the rise of digitized networks, such models offer exciting new directions for youth as electronic health promotion prosumers to participate in difficult challenges such as HIV prevention in the 21st century. CONCLUSIONS: It is time for institutions to embrace such opportunities, especially in areas where access to technology is widening, while continuing to champion youth and advocate for supportive social environments.

Cross-cultural acceptability and utility of the strengths and difficulties questionnaire: views of families.

BACKGROUND: Screening children for behavioural difficulties requires the use of a tool that is culturally valid. We explored the cross-cultural acceptability and utility of the Strengths and Difficulties Questionnaire for pre-school children (aged 3-5) as perceived by families in New Zealand. METHODS: A qualitative interpretive descriptive study (focus groups and interviews) in which 65 participants from five key ethnic groups (New Zealand European, Maori, Pacific, Asian and other immigrant parents) took part. Thematic analysis using an inductive approach, in which the themes identified are strongly linked to the data, was employed. RESULTS: Many parents reported they were unclear about the purpose of the tool, affecting its perceived value. Participants reported not understanding the context in which they should consider the questions and had difficulty understanding some questions and response options. Maori parents generally did not support the questionnaire based approach, preferring face to face interaction. Parents from Maori, Pacific Island, Asian, and new immigrant groups reported the tool lacked explicit consideration of children in their cultural context. Parents discussed the importance of timing and multiple perspectives when interpreting scores from the tool. CONCLUSIONS: In summary, this study posed a number of challenges to the use of the Strengths and Difficulties Questionnaire in New Zealand. Further work is required to develop a tool that is culturally appropriate with good content validity.

Building trust to work with children after a severe traumatic accident.

Trust is integral to nursing; yet little is known about how nurses establish trust when working with patients. This grounded theory study explored nurses' perspectives of how to build trust with a child and family in the context of paediatric acute health care. Seven paediatric acute care nurses were asked what they did when they cared for a child admitted to an acute care ward from emergency department or intensive care unit following a severe traumatic accident. Building trust emerged as the basic social process for an effective working relationship between a nurse and family to promote the rehabilitation of the child. This paper argues that building trust is critical to nurses developing a working relationship with both child and family to promote optimal health, and enables nurses to effectively step out and handover the care of the child to the family.

Building Trust to Work with Children after a Severe Traumatic Accident.

Abstract Trust is integral to nursing; yet little is known about how nurses establish trust when working with patients. This grounded theory study explored nurses' perspectives of how to build trust with a child and family in the context of paediatric acute health care. Seven paediatric acute care nurses were asked what they did when they cared for a child admitted to an acute care ward from emergency department or intensive care unit following a severe traumatic accident. Building trust emerged as the basic social process for an effective working-relationship between a nurse and family to promote the rehabilitation of the child. This paper argues that building trust is critical to nurses developing a working relationship with both child and family to promote optimal health, and enables nurses to effectively step out and handover the care of the child to the family.

The competency of New Zealand new graduate occupational therapists: perceived strengths and weaknesses.

BACKGROUND/AIM: There is a paucity of research examining the issues faced by New Zealand new graduate occupational therapists entering practice, including understanding graduates' abilities to translate knowledge and skills gained in their professional training, into the clinical setting. This study sought to explore the perceived strengths and weaknesses of newly graduated occupational therapists in New Zealand. METHODS: A mixed methods approach was used including: (i) online survey completed by 458 New Zealand registered occupational therapists, and (ii) five focus groups, in four cities, with occupational therapists, educators and managers. Survey and focus group questions explored new graduates' preparedness for practice based on the Occupational Therapy Board of New Zealand competencies for registration. RESULTS: New graduates were perceived to be strong in the competencies of 'communication' and 'continuing professional development', and weaker in the areas of 'implementation of occupational therapy' and 'management of environment and resources'. Perceptions of graduates' preparedness in relation to 'culturally safe practice', 'safe, ethical and legal practice' and 'management of self and people' were mixed. CONCLUSION: The profession has not raised any serious concerns about new graduates' preparedness for practice; however, there were some identified weaknesses. Currently, there is no clear evidence that increasing undergraduate training time would address these weaknesses and some indication that postgraduate focus may be preferable. Furthermore, the findings highlight the inconsistency in previous studies regarding perceptions of graduate preparedness. Further research regarding new graduates preparedness for practice, from multiple perspectives and taking into consideration length and stage of education, is recommended.

Perceived unmet needs for health care among Parkinson's Society of New Zealand members with Parkinson's disease.

UNLABELLED: We surveyed nationwide health needs for Parkinson's disease (PD) among New Zealand Parkinson's Society members with PD. BACKGROUND: Little literature assesses how people with PD perceive their health needs for this medical condition. METHOD: Cross-sectional survey of health needs through personal, structured telephone interviews with a random sample of 500 Parkinson's Society members with PD. RESULTS: Many participants wanted improved access to specialist care but their reported attendance rates suggest provider adherence to guideline recommendations. More general practitioners (GPs) than specialists were said to offer less information than wanted. Getting enough information in usual care was the best predictor (odds ratio 3.44, 95% CI: 1.93-6.13, p=0.000) of seeing a specialist for PD as often as wanted. CONCLUSIONS: People with PD have an important perspective in assessments of their health needs. GPs require training support in providing patient information about PD. Our study results may apply to Parkinson's Society members in similar health systems.