Realist process evaluation of occupational performance coaching: protocol.

INTRODUCTION: A cluster randomised controlled trial, the Meaning, Agency and Nurturing Autonomy (MANA) study, is underway comparing the effects of occupational performance coaching (OPC) and usual care on the social participation, health and well-being of children with neurodisability and their caregivers. This protocol presents the realist process evaluation which is occurring in parallel with the trial to allow testing and further refinement of OPC programme theory, as represented in its logic model. The aim of this realist evaluation is to examine what works, for whom, in the implementation of OPC with caregivers of children with neurodisability (in particular, Maori and Pasifika) in current service delivery contexts. METHODS AND ANALYSIS: Guided by OPC programme theory and realist evaluation processes, mixed-methods data collected from the MANA study OPC group will be analysed to elucidate when OPC works (outcomes), for whom, how (mechanisms) and under what circumstances (contexts). This will culminate in the synthesis of Intervention-Actor Context-Mechanism-Outcome configurations. Descriptive analyses will be reported for quantitative measures of treatment fidelity (OPC-Fidelity Measure), caregiver emotional response to OPC (Session Rating Scale) preintervention emotional state (Depression Stress and Anxiety Scale) and client outcomes (Canadian Occupational Performance Measure). Reflexive thematic analysis will be undertaken to analyse realist interviews with therapists who implemented OPC above and below fidelity thresholds and culturally focused interviews with clients of Maori or Pasifika ethnicity, informing understanding of the contexts influencing therapists' implementation of OPC with fidelity, and the mechanisms triggered within therapists or caregivers to elicit a response to the intervention. The MANA study trial outcomes will be reported separately. ETHICS AND DISSEMINATION: Ethical approval for this study was granted by the New Zealand Health and Disability Ethics Committee (20/STH/93). In all participating jurisdictions local area approval was obtained, involving a process of local Maori consultation. Results will be disseminated to all participants, and more broadly to clinicians and policy-makers through conference presentations and peer-reviewed journal publications, which will inform decision-making about resourcing and supporting effective delivery of OPC to optimise outcomes for children and caregivers. TRIAL REGISTRATION NUMBER: ACTRN12621000519853.

Occupational Performance Coaching for Children With Neurodisability: A Randomized Controlled Trial Protocol.

Background. Occupational Performance Coaching (OPC) is a goal-oriented approach in which client agency takes precedence in goal selection, analysis, choice of action, and evaluation of success. The intended outcomes of OPC are improved occupational performance and participation in clients' life situations. Randomized clinical trials are needed to determine the effectiveness of OPC. Purpose. This study protocol outlines a randomized controlled trial (RCT) of OPC compared to usual care with caregivers of children with neurodisability in improving child, caregiver, and family occupational performance. Method. A single-blind, 2-arm parallel-group, cluster RCT of OPC compared to usual care is planned. Therapists delivering the intervention (N = 14) are randomized to "OPC training" or "usual care" groups. The primary outcome is occupational performance improvement in caregiver (N = 84) identified goals. Implications. Findings will provide translational evidence of the effectiveness of OPC and clarify intervention processes. Areas of future OPC research and development will be indicated.

Exploring the Important Determinants Shaping Treatment Preferences: Qualitative Insights into Breast Cancer Patient Experiences and Perspectives in New Zealand.

Purpose: Despite the importance of acknowledging patient preferences in treatment decision-making, little is known about the treatment preferences and the factors underlying those preferences of breast cancer patients. This study aims explore patient experience and perspective regarding treatment preferences and identify the important determinants that shape these preferences in the context of New Zealand. Patients and Methods: Semi-structured online interviews comprised of six focus group discussions and five individual interviews were performed with 26 breast cancer patients. The interviews were recorded, transcribed, and analyzed using the reflexive thematic analysis approach. Results: Four main themes were derived: (1) positive treatment outcomes; (2) the negative impact of treatment-related side effects on quality of life; (3) treatment accessibility, availability, and timeliness; (4) cost of treatment. Patients revealed a strong preference towards treatments that yield longer survival, achieve remission, and prevent cancer recurrence. Additionally, patients favored treatments with minimal side effects that had minimal impact on their quality of life. There was a notable preference for treatments that were easily accessible and available in a timely manner. However, patients faced challenging decisions in balancing the costs of treatments with their benefits, leading to a consistent preference for treatments supported by government funding or medical insurance to alleviate financial burdens. Conclusion: Our study reveals that breast cancer patients in New Zealand have different perceptions and preferences regarding cancer treatment. Patients frequently find themselves making trade-offs among various attributes of a treatment, aligning these decisions with their personal values and beliefs. By considering these preferences and trade-offs in future studies that measure patient preferences, healthcare professionals can enhance their support for patients in making informed choices that align with their values and priorities. Additionally, healthcare policymakers can develop patient-centered policies that cater to the unique needs and preferences of breast cancer patients.

'A balancing act'. Living with severe chronic obstructive pulmonary disease in Southern New Zealand: a qualitative study.

INTRODUCTION Chronic obstructive pulmonary disease (COPD) is a common chronic condition managed in primary care. AIM To understand how patients with severe COPD living in the Southern Health Region (Otago and Southland) experience and cope with the condition. METHODS Semi-structured interviews were undertaken with 23 patients with severe COPD (defined using the 2013 GOLD classification). A thematic analysis was conducted. RESULTS Patients' accounts of living with severe COPD revealed four themes: loss, adaptation, isolation and social support. All participants discussed their sense of loss in coming to terms with having COPD and the ongoing restrictions or changes that were associated with breathlessness and fatigue. These losses required adaptation in daily living. Some patients struggled to adjust to new limitations and needed to rely on others for support. Others found ways to adapt their surroundings or ways of doing things while trying to maintain the same activities. Isolation was described in two ways - direct (no longer being able to easily socialize because activities often caused breathlessness) and indirect (the feeling of being isolated from others because they do not understand what it is like to live with COPD). Social support, including support provided by group-based pulmonary rehabilitation, helped to address the problems of social isolation. DISCUSSION Living with severe COPD is a 'balancing act' between insecurity (loss and isolation) and resilience (adaptation and social support). Health-care providers need to be proactive in identifying and managing patients' unmet health needs and promote activities that reduce social isolation.

Improving access to health care for people with severe chronic obstructive pulmonary disease (COPD) in Southern New Zealand: qualitative study of the views of health professional stakeholders and patients.

OBJECTIVES: Chronic obstructive pulmonary disease (COPD) is a common chronic disease with significant morbidity and mortality, particularly for Maori, which places a large burden on the New Zealand (NZ) health system. We undertook a qualitative study as part of a mixed-methods implementation research project which aimed to determine the barriers and enablers to the provision of accessible high-quality COPD care. SETTING: Southern Health Region of NZ (Otago and Southland). PARTICIPANTS: Thirteen health professional stakeholders and 23 patients with severe COPD (including one Maori and one Pasifika participant). METHODS: Semistructured interviews were undertaken. A thematic analysis using the Levesque conceptual framework for access to healthcare was conducted. RESULTS: Health professional stakeholders identified barriers to providing access to health services, in particular: availability (inadequate staffing and resourcing of specialist services and limited geographical availability of pulmonary rehabilitation), affordability (both of regular medication, medication needed for an exacerbation of COPD and the copayment charge for seeing a general practitioner) and appropriateness (a shared model of care across primary and secondary care was needed to facilitate better delivery of key interventions such as pulmonary rehabilitation and advance care planning (ACP). Maori stakeholders highlighted the importance of communication and relationships and the role of whanau (extended family) for support. Patients' accounts showed variable ability to access services through having a limited understanding of what COPD is, a limited knowledge of services they could access, being unable to attend pulmonary rehabilitation (due to comorbidities) and direct (medication and copayment charges) and indirect (transport) costs. CONCLUSIONS: People with severe COPD experience multilevel barriers to accessing healthcare in the NZ health system along the pathway of care from diagnosis to ACP. These need to be addressed by local health services if this group of patients are to receive high-quality care.

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.