The experiences of young people with chronic illness in New Zealand: A qualitative study.

BACKGROUND: Around 10% of young people suffer from chronic health conditions, and their health care needs are different from those of children or adults. Most research about young people's chronic illness focuses on specific conditions, on younger children's experience, and on the perspectives of parents. This study explored the experiences of young people with two very different chronic conditions (asthma and cancer) and their perception of the New Zealand health system's response to their needs. METHODS: This was a collaborative research process where eight young co-researchers who had asthma or cancer were employed to work alongside the research team to develop protocols, interview peers, and assist with analysis. The challenges of this process are described in the article. Twenty-one young people between ages 15 and 27 from two urban areas of New Zealand participated in semistructured open-ended interviews about their health care experiences. Sixteen participants were female, and five male. Eleven of the participants had finished cancer treatment (with an average of 3.6 years since diagnosis), and 10 had asthma. Purposeful sampling meant that 80% of the participants with asthma were identified as Maori and the other participants identified with a range of other ethnic groups. Data were thematically coded, and coresearchers were consulted to derive the ultimate findings. RESULTS: Chronic illness disrupted the trajectory of young people's lives and had significant effects on their relationships. The New Zealand health system generally did not respond well to the needs of these young people, but many encountered extraordinary individuals who supported them effectively. The experiences of some indigenous participants indicate that health professionals require effective cultural competence training. CONCLUSIONS: This study provides insights into how young people with very different conditions experience the health system. Young people should be consulted and actively included in decision making about making health systems responsive to their diverse needs.

Dual use of electronic nicotine delivery systems (ENDS) and smoked tobacco: a qualitative analysis.

INTRODUCTION: Electronic nicotine delivery systems (ENDS) arguably pose fewer health risks than smoking, yet many smokers adopt ENDS without fully relinquishing smoking. Known as 'dual use', this practice is widespread and compromises the health benefits that ENDS may offer. To date, few studies have explored how dual use practices arise and manifest. METHODS: We conducted in-depth, semi-structured interviews with 20 current ENDS users from New Zealand who reported smoking tobacco at least once a month. We explored participants' smoking history, their recent and current smoking, trial, uptake and patterns of ENDS use, and future smoking and vaping intentions. We managed the data using NVivo V.11 and used a thematic analysis approach to interpret the transcripts. RESULTS: Dual use practices among participants evolved in four ways. First, as an attempt to manage the 'inauthenticity' of vaping relative to smoking and to retain meaningful rituals. Second, as complex rationalisations that framed decreased tobacco use, rather than smoking cessation, as 'success'. Third, as a means of alleviating the financial burden smoking imposed and to circumvent smoke-free policies. Lastly, dual use reflected attempts to comply with social group norms and manage stigma. CONCLUSIONS: Dual use reflects both social and physical cues. It assisted participants to navigate smoking restrictions and allowed them to manage divergent norms. Policies that discourage smoking, particularly excise tax increases on smoked tobacco and smoke-free space restrictions, appear important in prompting ENDS use. Future research could explore whether these policies also help foster complete transition from smoking to exclusive ENDS use.

SunSmart news? Traditional media coverage of sun protection issues during springtime in New Zealand.

ISSUES ADDRESSED: Cutaneous melanomas and keratinocyte carcinomas (nonmelanoma skin cancer) are highly prevalent in New Zealand (NZ), making skin cancer a priority area for cancer control. Spring is an important time for encouraging sun-safety, due to ultraviolet radiation (UVR) levels becoming hazardous. The news media have a potential to play an important role in reminding people and emphasising the importance of sun-safety. This study aimed to describe how the traditional NZ media portrayed sun-safety and skin cancer in spring news stories. METHODS: A media monitoring company collated stories related to cancer during spring 2016. These were reviewed for inclusion and content was coded according to the cancer type described. Stories focused on skin cancer and sun protection issues were coded according to the position on the cancer control continuum. RESULTS: Skin cancer and sun-safety represented 3.6% (n = 110) of all cancer stories published. Stories mainly related to primary prevention (72%), early detection (37%) and survivorship (27%). The main risk factors identified included sun exposure (49%) and tanning (25%). CONCLUSIONS: Traditional media coverage of skin cancer remains relatively low during springtime. It is heartening to see that most stories included prevention information. SO WHAT?: Given the impact of skin cancer in NZ, and the importance of springtime as a period for behaviour change to reduce risk, there is considerable scope for increased media coverage and advocacy. Further research could usefully analyse media trends throughout the year and within specific media platforms, both traditional and new, in order to further disseminate information to the NZ public.

A qualitative exploration of information-seeking by electronic nicotine delivery systems (ENDS) users in New Zealand.

OBJECTIVES: Given recent increases in awareness and uptake of electronic nicotine delivery systems (ENDS), we aimed to explore ENDS users' information needs and search behaviours and whether information gaps exist. DESIGN: Qualitative study using semistructured interviews that probed participants' smoking behaviours and ENDS use; data in this study examine ENDS information-seeking behaviours. We used qualitative description to analyse interview transcripts. PARTICIPANTS AND SETTING: We recruited 39 current ENDS users (20 dual users and 19 exclusive ENDS users who reported having previously smoked cigarettes regularly) aged 18 and over, from three urban centres in New Zealand. RESULTS: Several participants used Google to search for information on ENDS' health effects, but described the material they retrieved as vague or contradictory. Some interpreted the absence of information on long-term health effects as evidence ENDS did not pose potential health risks, and several perceived e-liquids as benign. Many relied on information sourced from other ENDS users, gleaned from online forums, YouTube or from discussions with friends and acquaintances; these sources typically presented ENDS positively. Several participants found specialist ENDS retailers provided valuable advice; non-specialist store staff generally lacked detailed product knowledge and sometimes offered inaccurate information. CONCLUSION: People seeking information on ENDS' health effects are more likely to retrieve recommendations, product reviews and endorsements from online sources or through exchanges with other users, than they are to find scientific data. Health authorities could help meet potential users' information needs by, first, creating and frequently updating objective lay summaries of the latest scientific evidence; second, by mandating licensing for retailers with guidelines to disclose uncertainty over ENDS' efficacy for cessation and longer-term health effects, and the need for complete substitution of ENDS for combustible cigarettes among those who use these products.

Reflections: Spirituality and Cancer Researchers.

Spirituality is increasingly acknowledged as an essential element to consider within care for cancer and other chronic health conditions. As our colleagues in frontline healthcare roles integrate these concepts into their professional practice, it seems timely for the cancer research community to reflect on the place of spirituality within our work. This reflections article discusses challenges and opportunities for researchers considering spirituality in their own work roles and within broader discussions about health needs, care and research agendas.

Cancer Information Seeking Among Adult New Zealanders: a National Cross-Sectional Study.

Organisations seeking to establish themselves as leading cancer information sources for the public need to understand patterns and motivators for information seeking. This study describes cancer information seeking among New Zealanders through a national cross-sectional survey conducted in 2014/15 with a population-based sample of adults (18 years and over). Participants were asked if they had sought information about cancer during the past 12 months, the type of information they sought, what prompted them to look for information and ways of getting information they found helpful. Telephone interviews were completed by 1064 participants (588 females, 476 males, 64% response rate). Of these, 33.8% of females and 23.3% of males (total, 29.2%) had searched for information about cancer over the past year. A search was most frequently prompted by a cancer diagnosis of a family member or friend (43.3%), a desire to educate themselves (17.5%), experience of potential symptoms or a positive screening test (9.4%), family history of cancer (8.9%) or the respondent's own cancer diagnosis (7.7%). Across the cancer control spectrum, the information sought was most commonly about treatment and survival (20.2%), symptoms/early detection (17.2%) or risk factors (14.2%), although many were general or non-specific queries (50.0%). The internet was most commonly identified as a helpful source of information (71.7%), followed by health professionals (35.8%), and reading material (e.g. books, pamphlets) (14.7%).This study provides a snapshot of cancer information seeking in New Zealand, providing valuable knowledge to help shape resource delivery to better meet the diverse needs of information seekers and address potential unmet needs, where information seeking is less prevalent.

Cancer Mortality, Early Detection and Treatment among Adult New Zealanders: Changes in Perceptions between 2001 and 2014/5

Background: Beliefs about cancer risk and experience of early detection and treatment can impact on willingness to engage with these initiatives. This study describes changes in perceptions of cancer mortality, early detection and treatment among adult New Zealanders (NZ) between two cross-sectional studies conducted in 2001 and 2014/5. Methods: Data was collected via telephone interviews conducted by trained interviewers in 2001 (231 females and 207 males, 64% response rate) and 2014/5 (588 females and 476 males, 64% response rate). Participants were asked to identify the most common three causes of cancer mortality among women and then men. They were also asked to note their agreement or otherwise with statements about early detection and treatment of cancer. Results: There was an increase in proportions of men who correctly identified prostate cancer as one of the top three causes of cancer mortality among men, and also an increase among women who correctly identified bowel cancer as one of the top three. Most participants agreed that there were benefits from early detection for cancer outcomes. Over time, there was a significant decline in proportions which felt that most cancer treatment is "so terrible it is worse than death" and that alternative therapy has an "equal or better chance of curing cancer." Conclusion: Internationally, there is little information available about changes in cancer perceptions over time, these findings suggest some changes in perceptions of treatment and awareness of types of cancer with the highest mortality in NZ, which should support timely engagement with early detection and treatment services.

Knowledge of Evidence-Based Cancer Risk Factors Remains Low Among New Zealand Adults: Findings from Two Cross-Sectional Studies, 2001 and 2015

Objective: Cancer risk reduction messages are a part of cancer control efforts around the world. The complex reality is that risk factors differ for different types of cancer, making clear communication of desired behavioural changes more difficult. This study aims to describe awareness of risk factors for breast, bowel, cervical, prostate and lung cancer and cutaneous melanoma among New Zealanders in 2014/15 and identify changes in awareness since 2001. Methods: Two national telephone surveys, the first (CAANZ01) conducted in 2001, included 438 adults (231 females and 207 males, 64% response rate). The second, conducted in 2014/15 (CAANZ15), included 1064 adults (588 females and 476 males, 64% response rate). Results: In 2014/5, most participants could identify evidence-based risk factors for lung cancer and melanoma. In contrast, many participants were unable to name any risk factors (evidence-based or otherwise) for bowel (34.8%), breast (48.8%), cervical (53.9%) and prostate cancer (60.9%). Between 2001 and 2014/5 there were increases in the proportion of individuals identifying sunbeds as increasing melanoma risk, and alcohol consumption and family history as increasing risk for bowel and breast cancer. Conclusions: Effective communication of risk information for specific cancers remains a challenge for cancer control. Although some positive changes in awareness over the 14 year period were observed, there remains substantial room for progressing awareness of evidence-based risk factors.

Cancer Awareness in Aotearoa New Zealand (CAANZ), 2001 and 2015: Study Protocols.

Population cancer awareness is of interest worldwide, as efforts are made to reduce cancer incidence via changes in risk and protective behaviours. To date, few studies have described changes in awareness over time, despite significant investment in raising awareness about various cancer types and risk behaviours. This paper describes the Cancer Awareness in Aotearoa New Zealand (CAANZ) survey, a cross-sectional telephone survey of adult New Zealanders conducted in 2014/2015 (CAANZ15, n = 1064) and its comparison with a similar 2001 study (CAANZ01, n = 438). Both aimed to describe current cancer awareness among a national sample of New Zealand (NZ) adults, with additional aims for CAANZ15 being to explore emerging issues in information provision and supportive care. Follow-up studies are challenged by changes in communication technologies and, in turn, potential issues in sampling. However, given the value of information about changing awareness, pragmatic steps were taken in CAANZ15 to maximise the response rate and comparability of the surveys. A response rate of 64 % was achieved for both samples. When compared to the adult NZ population, the CAANZ15 sample tended to be older, of higher socioeconomic status and under-representative of people with Pacific, Asian or, to a lesser extent, Maori (the indigenous population of NZ) ethnicity. To compensate for possible disproportionate age-by-ethnicity (Maori/non-Maori) groups in the sample, poststratification weighting was adopted. While caution will need to be exercised in drawing conclusions from comparisons made between these two cohorts, the dearth of such studies means that insights gained should be useful for guiding reflection on future cancer control directions and the generation of new hypotheses.

Promotion and support of physical activity among cancer survivors: a service provider perspective.

OBJECTIVE: Cancer survivors are a population group at higher risk of a number of adverse health outcomes. Physical activity during and post-treatment is beneficial, yet participation in physical activity tends to be low amongst cancer survivors. There is still much to be learnt about how service providers can successfully translate research evidence about the benefits of physical activity for cancer survivors into effective and widely available interventions to support physical activity participation. The aim of this qualitative study is to describe some of the current approaches used by the Cancer Society of New Zealand (CSNZ) to supporting physical activity among survivors and the opportunities and challenges associated with this. METHODS: Participants were Supportive Care Managers and representatives of the CSNZ. A generic qualitative approach included semi-structured interviews, transcription, member checking and analysis via thematic coding by two of the research team. RESULTS: Four major themes frame the discussion of the results: (i) existing physical activity programmes and resources for cancer survivors; (ii) gaps and needs in the provision of physical activity programmes for cancer survivors; (iii) barriers, facilitators and preferences in relation to physical activity participation; and (iv) considerations for service providers involved in developing physical activity programmes for cancer survivors. CONCLUSIONS: The implications for future research and for service provision of physical activity programmes for cancer survivors are discussed. Potential strategies to increase physical activity participation among cancer survivors are put forward.

Physical activity among cancer survivors: a literature review.

AIM: Physical activity offers a variety of health benefits to cancer survivors, both during and post-treatment. The aim here is to review: the preferences of cancer survivors regarding exercise counselling and participation in a physical activity programme; adherence rates among cancer survivors to physical activity programmes; and predictors of adherence to exercise training. METHODS: Two electronic databases, Ovid MEDLINE(R) 1950 to Present with Daily Update and SCOPUS, were used to undertake literature searches for studies examining exercise preferences of adult cancer survivors, and physical activity programmes for adults at any point of the cancer trajectory. RESULTS: Studies suggest that, while physical activity levels are low among cancer survivors, most are interested in increasing their participation. Preferences and adherence to physical activity programmes differ across a range of demographic, medical, and behavioural variables, suggesting the importance of tailoring exercise programmes to patient-specific and disease-specific needs. CONCLUSIONS: Current evidence supports the benefits of physical activity for improving risk factors associated with cancer prognosis. Physical activity programmes developed for oncology patients and cancer survivors need to take into account the needs of the target population in order to optimise adherence, outcomes, and long-term behavioural changes in this population.

Political activity for physical activity: health advocacy for active transport.

Effective health advocacy is a priority for efforts to increase population participation in physical activity. Local councils are an important audience for this advocacy. The aim of the current study was to describe features of advocacy for active transport via submissions to city council annual plans in New Zealand, and the impact of an information sheet to encourage the health sector to be involved in this process. Written submissions to city council's annual consultation process were requested for 16 city councils over the period of three years (2007/08, 2008/09, and 2009/10). Submissions were reviewed and categories of responses were created. An advocacy information sheet encouraging health sector participation and summarising some of the evidence-base related to physical activity, active transport and health was released just prior to the 2009/10 submission time. Over the period of the study, city councils received 47,392 submissions, 17% of which were related to active transport. Most submissions came from city residents, with a small proportion (2%) from the health sector. The largest category of submissions was in support of pedestrian and cycling infrastructure, design and maintenance of facilities and additional features to support use of these transport modes. Health arguments featured prominently in justifications for active transport initiatives, including concerns about injury risk, obesity, physical inactivity, personal safety and facilities for people with disabilities. There was evidence that the information sheet was utilised by some health sector submitters (12.5%), providing tentative support for initiatives of this nature. In conclusion, the study provides novel information about the current nature of health advocacy for active transport and informs future advocacy efforts about areas for emphasis, such as health benefits of active transport, and potential alliances with other sectors such as environmental sustainability, transport and urban planning and local communities.

Childhood and contemporaneous correlates of adolescent leisure time physical inactivity: a longitudinal study.

PURPOSE: Although concurrent influences on adolescent physical activity are well documented, longitudinal studies offer additional insights about early life antecedents of participation. The aim of this study was to examine associations between childhood and contemporaneous factors and patterns of physical activity participation during adolescence. METHODS: Physical activity participation at ages 15 and 18 was assessed among members of the Dunedin Multidisciplinary Health and Development Study cohort using the interview-based Minnesota Leisure Time Physical Activity Questionnaire. Logistic regression was used to examine associations between childhood factors (socioeconomic status, family "active-recreation" orientation, home activities, motor ability, intelligence, and psychiatric disorder), contemporaneous factors (parental health, body mass index, predicted VO(2 max), general health, television viewing, smoking, and alcohol use) and "persistent inactivity," "declining participation," or "persistent activity" during adolescence. RESULTS: In multivariate models, persistent inactivity during adolescence was associated with lower childhood family active-recreation orientation, and poorer cardiorespiratory fitness and general health during adolescence. Declining participation was more likely among those who reported fewer activities at home during childhood. Persistent activity was associated with better cardiorespiratory fitness and watching less television during adolescence. CONCLUSIONS: This study found that childhood and contemporaneous factors were associated with persistent inactivity, persistent activity and declining participation during adolescence. The findings highlight several factors from the family and home environment of potential importance in early intervention programs to support adolescent participation in physical activity.