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AIM: Posthumous electronic healthcare data (PHCD) are ubiquitous and increasing in volume. Despite their potential utility and value, no empirically-derived, publicly-generated information exists to guide what uses society may view as acceptable. This study explores the attitude and perceptions of Aotearoa New Zealanders to PHCD utilisation. METHODS: Focus groups explored topics focused around PHCD utilisation, including family access, consent models, infrastructure, anonymity, governance, and commercialisation. Data were transcribed and general thematic analysis utilised to explore themes and topics. RESULTS: Sixty-seven people participated across 12 focus groups (mean=50 minutes). Participants indicated conditional support for a centralised, Government-managed PHCD repository allowing controlled, no-cost access for healthcare and research purposes. Public benefit from data was important. Participants prioritised any benefits being preferentially directed to family, then Aotearoa New Zealanders, then others. Commercialisation from data use was viewed as likely and acceptable. Maori PHCD was considered preferably managed by Maori. Participants struggled to define appropriate levels of family access, anonymity, and consent models. CONCLUSIONS: This study delivers the first empirical evidence of social license for PHCD utilisation, providing guidance for establishing trustworthy data governance. Further exploration of the subject is warranted to guide development of frameworks to utilise PHCD in Aotearoa New Zealand.
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Atención a la Salud , Nativos de Hawái y Otras Islas del Pacífico , Actitud , Instituciones de Salud , Humanos , Nueva ZelandaRESUMEN
OBJECTIVE: To explore rural nurse experiences of ethical issues and their management of these as a first step in a programme of work to address rural nurses' ethical needs. DESIGN: This study was qualitative, using mixed qualitative techniques to gather data, which was analysed using a general inductive approach. SETTING: Primary health care in 2 regions of Aotearoa New Zealand. PARTICIPANTS: Eleven nurses working in the West Coast (District Health Board) region and 9 working within the Southern District Health Board region. INTERVENTION: Participants took part in either a focus groups or an interview with members of the research team. MAIN OUTCOME MEASURES: To document ethical issues that confronted these rural nurses and how they navigated these issues. RESULTS: Three themes were identified: 'Signals and Silences,' 'One and Other' and 'Frustrations and Freedoms.' A continuous thread through these themes was the concept of phronesis, or what is sometimes called practical virtue. This practical virtue largely developed through their own experiences, rather than through educational or health system specific support or resources. CONCLUSIONS: We found that rural nurses' deal with specific issues related to the rural setting, such as resourcing and isolation, while maintaining a relationship with the communities they serve and their professional autonomy. Additionally, we discovered the ways in which rural nurses deal with the ethical issues they encounter to be practically focussed. However, rural nurses need supportive leadership not only to sustain the moral agency they demonstrate but also to further develop their ethical decision-making practices. The provision of a clinical ethics tele-service delivering both training opportunities and an on-call consult support service would provide a potential solution.
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Ética en Enfermería , Enfermeras y Enfermeros , Servicios de Salud Rural/ética , Grupos Focales , Humanos , Nueva Zelanda , Investigación CualitativaRESUMEN
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.
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Enfermedad Pulmonar Obstructiva Crónica/fisiopatología , Calidad de Vida , Anciano , Anciano de 80 o más Años , Femenino , Humanos , Entrevistas como Asunto , Masculino , Persona de Mediana Edad , Nueva Zelanda , Enfermedad Pulmonar Obstructiva Crónica/psicología , Investigación Cualitativa , Índice de Severidad de la EnfermedadRESUMEN
We examined health care utilisation and needs of people with severe COPD in the low-population-density setting of the Southern Region of New Zealand (NZ). We undertook a retrospective case note review of patients with COPD coded as having an emergency department attendance and/or admission with at least one acute exacerbation during 2015 to hospitals in the Southern Region of NZ. Data were collected and analysed from 340 case notes pertaining to: demographics, hospital admissions, outpatient contacts, pulmonary rehabilitation, advance care planning and comorbidities. Geometric mean (95%CI) length of stay for hospital admissions in urban and rural hospitals was 3.0 (2.7-3.4) and 4.0 (2.9-5.4) days respectively. More patients were from areas of higher deprivation but median hospital length of stay for patients from the least deprived areas was 2.0 days longer than others (p = 0.04). There was a median of 4 (range 0-16) comorbidities and 10 medications (range 0-25) per person. Of 169 cases where data was available, 26 (15%) were offered, 17 (10%) declined, and 5 (3%) completed, pulmonary rehabilitation at or in the year prior to the index admission. Patients were less likely to be offered pulmonary rehabilitation if they lived >20km away from the hospital where it took place (odds ratio of 0.12 for those living further away [95%CI 0.02-0.93, p = 0.04]). There were deficits in care: provision and uptake of non-pharmacological interventions was suboptimal and unevenly distributed across the region. Further research is needed to develop and evaluate strategies for delivering non-pharmacological interventions in this setting.
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Servicio de Urgencia en Hospital/estadística & datos numéricos , Necesidades y Demandas de Servicios de Salud , Aceptación de la Atención de Salud/estadística & datos numéricos , Admisión del Paciente/estadística & datos numéricos , Enfermedad Pulmonar Obstructiva Crónica/terapia , Anciano , Anciano de 80 o más Años , Comorbilidad , Prescripciones de Medicamentos/estadística & datos numéricos , Femenino , Necesidades y Demandas de Servicios de Salud/estadística & datos numéricos , Hospitales Rurales/estadística & datos numéricos , Hospitales Urbanos/estadística & datos numéricos , Humanos , Tiempo de Internación/estadística & datos numéricos , Masculino , Persona de Mediana Edad , Nueva Zelanda , Polifarmacia , Enfermedad Pulmonar Obstructiva Crónica/rehabilitación , Estudios RetrospectivosRESUMEN
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.