Objective: To improve understandings of the enablers and barriers to maintaining good quality of life for people dying, caring and grieving in rural areas.Design and setting: In-depth interviews designed on participatory research principles were held with bereaved carers living in a small community in rural Tasmania. Participants had cared for someone until their death within the three-year period prior.Participants: 19 participants comprising 18 bereaved former carers and one person with a life-limiting illness, and all but four were over retirement age.Study Aim: To explore experiences of end of life care in a rural community.Results: Participants discussed the challenges they experienced during end of life caring, including transport into the city for treatment, and access to basic and specialised services. However, they also reported positive aspects of formal and informal palliative care, and described experiences of personable, expert, flexible and innovative caregiving. Conclusions: The rural location enabled personalised and innovative expressions of care. This research adds new insight into rural end of life palliation, as a complex intersection of supererogation 1 , innovation and place-driven care.What is already known on the subject• There is unmet need for palliative services in rural areas 1 We use the term supererogation in this paper to refer to acts which might be considered additional to essential tasks. 2• Rural Palliative care research is an under-researched area• Informal, community support plays a vital role in end-of-life care What this paper adds• Bereaved carers living in rural areas may have both negative and positive experiences of end-of-life care• Rural end-of-life care is a complex intersection of supererogation, innovation and place-driven interventions• The lived experience of rural carers may improve palliative care
The traditional genetic counseling model encompasses an individualized counseling session that includes the presentation of information about genes, chromosomes, personalized risk assessment, and genetic testing and screening options. Counselors are challenged to balance the provision of enough basic genetic information to ensure clients' understanding of the genetic condition in question with a personalized discussion of what this information means to them. This study explored the perceptions Latinas have about prenatal genetic counseling sessions and aimed to determine if they had preferences about the delivery of care. Data were collected through focus groups and one-on-one, semi-structured interviews of 25 Spanish speaking Latinas who received genetic counseling during their current pregnancy. We implemented grounded theory to evaluate participant responses, and were able to identify common emergent themes. Several themes were identified including an overall satisfaction with their prenatal genetic counseling appointment, desire for a healthy baby, peace of mind following their appointment, lack of desire for invasive testing, and faith in God. Several participants stated a preference for group genetic counseling over the traditional individual genetic counseling model. Our data indicate that Latinas value the information presented at prenatal genetic counseling appointments despite disinterest in pursuing genetic testing or screening and suggest that group prenatal genetic counseling may be an effective alternative to the traditional genetic counseling model in the Latina population.
Background and ObjectivesInternational evidence shows that patients treated at nonurban hospitals experience poorer access to key stroke interventions. Evidence for whether this results in poorer outcomes is conflicting and generally based on administrative or voluntary registry data. The aim of this study was to use prospective high-quality comprehensive nationwide patient-level data to investigate the association between hospital geography and outcomes of patients with stroke and access to best-practice stroke care in New Zealand.MethodsThis is a prospective, multicenter, nationally representative observational study involving all 28 New Zealand acute stroke hospitals (18 nonurban) and affiliated rehabilitation and community services. Consecutive adults admitted to the hospital with acute stroke between May 1 and October 31, 2018, were captured. Outcomes included functional outcome (modified Rankin Scale [mRS] score shift analysis), functional independence (mRS score 0–2), quality of life (EuroQol 5-dimension, 3-level health-related quality of life questionnaire), stroke/vascular events, and death at 3, 6, and 12 months and proportion accessing thrombolysis, thrombectomy, stroke units, key investigations, secondary prevention, and inpatient/community rehabilitation. Results were adjusted for age, sex, ethnicity, stroke severity/type, comorbid conditions, baseline function, and differences in baseline characteristics.ResultsOverall, 2,379 patients were eligible (mean [SD] age 75 [13.7] years; 51.2% male; 1,430 urban, 949 nonurban). Patients treated at nonurban hospitals were more likely to score in a higher mRS score category (greater disability) at 3 (adjusted odds ratio [aOR] 1.28, 95% CI 1.07–1.53), 6 (aOR 1.33, 95% CI 1.07–1.65), and 12 (aOR 1.31, 95% CI 1.06–1.62) months and were more likely to have died (aOR 1.57, 95% CI 1.17–2.12) or experienced recurrent stroke and vascular events at 12 months (aOR 1.94, 95% CI 1.14–3.29 and aOR 1.65, 95% CI 1.09–2.52). Fewer nonurban patients received recommended stroke interventions, including endovascular thrombectomy (aOR 0.25, 95% CI 0.13–0.49), acute stroke unit care (aOR 0.60, 95% CI 0.49–0.73), antiplatelet prescriptions (aOR 0.72, 95% CI 0.58–0.88), ≥60 minutes of daily physical therapy (aOR 0.55, 95% CI 0.40–0.77), and community rehabilitation (aOR 0.69, 95% CI 0.56–0.84).DiscussionPatients managed at nonurban hospitals experience poorer stroke outcomes and reduced access to key stroke interventions across the entire care continuum. Efforts to improve access to high quality stroke care in nonurban hospitals should be a priority.
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