Search

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, Māori 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 Māori 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 Māori 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.

ABSTRACT INTRODUCTIONChronic obstructive pulmonary disease (COPD) is a common chronic condition managed in primary care. AIMTo understand how patients with severe COPD living in the Southern Health Region (Otago and Southland) experience and cope with the condition. METHODSSemi-structured interviews were undertaken with 23 patients with severe COPD (defined using the 2013 GOLD classification). A thematic analysis was conducted. RESULTSPatients' 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. DISCUSSIONLiving 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.

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.Plain Language Summary: Breast cancer is a significant health concern in New Zealand, affecting both the well-being of patients and their families. Despite advancements in treatment, patient preferences regarding treatment risks and benefits are often neglected. This study aims to bridge this knowledge gap by qualitatively exploring the unique experiences and preferences of breast cancer patients in New Zealand, shedding light on the factors influencing their treatment decisions. The study involved a series of interviews with a group of 26 women living with breast cancer. The interview revealed four main themes that shape patients' preferences for breast cancer treatment: 1. Positive outcomes: Patients revealed a strong preference towards treatments that yield longer survival, achieve remission, and prevent cancer recurrence. 2. Quality of life: Treatment-related side effects negatively impacted patients' quality of life, affecting them physically, mentally, emotionally, spiritually, and psychosocially. Patients preferred a treatment that entailed few side effects with minimal impact on their quality of life. 3. Treatment accessibility and timeliness: Patients expressed concerns about administrative complexities, long distances to healthcare facilities, timely treatment, and restricted access to treatment options in the country. There was a notable preference for treatments that were easily accessible and available in a timely manner. 4. Cost of treatment: Balancing the cost of treatments with their benefits posed challenging decisions for patients, who consistently voiced a preference for treatments supported by government funding or medical insurance.The study highlights diverse perspectives and preferences among breast cancer patients in New Zealand about treatment preference. Patients frequently find themselves making trade-offs concerning various attributes of a treatment that align with their individual values and beliefs. Integrating these preferences and trade-offs into future studies and healthcare policies can help healthcare professionals and policymakers better support patients in making informed choices aligned with their values, fostering a more patient-centered healthcare system. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Objectives Chronic obstructive pulmonary disease (COPD) is a common chronic disease with significant morbidity and mortality, particularly for Māori, 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 Māori 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). Māori stakeholders highlighted the importance of communication and relationships and the role of whānau (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. [ABSTRACT FROM AUTHOR]