Deborah Raphael

Patients' engagement in primary care: powerlessness and compounding jeopardy. A qualitative study

Primary health care does not adequately respond to populations known to have high needs such as those with compounding jeopardy from chronic conditions, poverty, minority status and age; as such populations report powerlessness.

Palliative care need and management in the acute hospital setting: a census of one New Zealand Hospital

BackgroundImproving palliative care management in acute hospital settings has been identified as a priority internationally. The aim of this study was to establish the proportion of inpatients within one acute hospital in New Zealand who meet prognostic criteria for palliative care need and explore key aspects of their management.MethodsA prospective survey of adult hospital inpatients (n = 501) was undertaken. Case notes were examined for evidence that the patient might be in their last year of life according to Gold Standards Framework (GSF) prognostic indicator criteria. For patients who met GSF criteria, clinical and socio-demographic information were recorded.ResultsNinety-nine inpatients met GSF criteria, representing 19.8% of the total census population. The patients’ average age was 70 years; 47% had a primary diagnosis of cancer. Two thirds had died within 6 months of their admission. Seventy-eight of the 99 cases demonstrated evidence that a palliative approach to care had been adopted; however documentation of discussion about goals of care was very limited and only one patient had evidence of an advance care plan.ConclusionOne fifth of hospital inpatients met criteria for palliative care need, the majority of whom were aged >70 years. Whilst over three quarters were concluded to be receiving care in line with a palliative care approach, very little documented evidence of discussion with patients and families regarding end of life issues was evident. Future research needs to explore how best to support ‘generalist’ palliative care providers in initiating, and appropriately recording, such discussions.

Clinical staff perceptions of palliative care-related quality of care, service access, education and training needs and delivery confidence in an acute hospital setting

Context Central to appropriate palliative care management in hospital settings is ensuring an adequately trained workforce. In order to achieve optimum palliative care delivery, it is first necessary to create a baseline understanding of the level of palliative care education and support needs among all clinical staff (not just palliative care specialists) within the acute hospital setting. Objectives The objectives of the study were to explore clinical staff: perceptions concerning the quality of palliative care delivery and support service accessibility, previous experience and education in palliative care delivery, perceptions of their own need for formal palliative care education, confidence in palliative care delivery and the impact of formal palliative care training on perceived confidence. Methods A purposive sample of clinical staff members (598) in a 710-bed hospital were surveyed regarding their experiences of palliative care delivery and their education needs. Results On average, the clinical staff rated the quality of care provided to people who die in the hospital as ‘good’ (x̄=4.17, SD=0.91). Respondents also reported that 19.3% of their time was spent caring for end-of-life patients. However, only 19% of the 598 respondents reported having received formal palliative care training. In contrast, 73.7% answered that they would like formal training. Perceived confidence in palliative care delivery was significantly greater for those clinical staff with formal palliative care training. Conclusions Formal training in palliative care increases clinical staff perceptions of confidence, which evidence suggests impacts on the quality of palliative care provided to patients. The results of the study should be used to shape the design and delivery of palliative care education programmes within the acute hospital setting to successfully meet the needs of all clinical staff.

Nurse-patient communication in primary care diabetes management: an exploratory study

BackgroundDiabetes is a major health issue for individuals and for health services. There is a considerable literature on the management of diabetes and also on communication in primary care consultations. However, few studies combine these two topics and specifically in relation to nurse communication. This paper describes the nature of nurse-patient communication in diabetes management.MethodsThirty-five primary health care consultations involving 18 patients and 10 nurses were video-recorded as part of a larger multi-site study tracking health care interactions between health professionals and patients who were newly diagnosed with Type 2 diabetes. Patients and nurses were interviewed separately at the end of the 6-month study period and asked to describe their experience of managing diabetes. The analysis used ethnography and interaction analysis.In addition to analysis of the recorded consultations and interviews, the number of consultations for each patient and total time spent with nurses and other health professionals were quantified and compared.ResultsThis study showed that initial consultations with nurses often incorporated completion of extensive checklists, physical examination, referral to other health professionals and distribution of written material, and were typically longer than consultations with other health professionals. The consultations were driven more by the nurses’ clinical agenda than by what the patient already knew or wanted to know. Interactional analysis showed that protocols and checklists both help and hinder the communication process. This contradictory outcome was also evident at a health systems level: although organisational targets may have been met, the patient did not always feel that their priorities were attended to. Both nurses and patients reported a sense of being overwhelmed arising from the sheer volume of information exchanged along with a mismatch in expectations.ConclusionsConscientious nursing work was evident but at times misdirected in terms of optimal use of time. The misalignment of patient expectations and clinical protocols highlights a common dilemma in clinical practice and raises questions about the best ways to balance the needs of individuals with the needs of a health system. Video- recording can be a powerful tool for reflection and peer review.

Older people with heart failure and general practitioners – temporal reference frameworks and implications for practice

The aim of the study was to identify the time experiences of older patients and general practitioners (GPs). Secondary analysis of qualitative data collected from two longitudinal studies, one in the United Kingdom (UK) and the other in New Zealand (NZ), was carried out. The UK study involved interviews with 44 older people with heart failure and nine focus group discussions with primary health professionals during 2004-2005. The NZ study involved 79 interviews with 25 older people with heart failure and 30 telephone interviews with GPs during 2008-2009. Temporal reference frameworks function as background expectations and influence how patients and GPs experienced time and act as time controls. The key themes identified were: clock time was evident in how it structured the consultations; both patients and GPs valued needing time and for some GPs this involved creating space for emotional time. There were also tensions between needing time and wasting time; being known over time was important to both patients and GPs. For older people with heart failure improving their quality of care is essential and time is integral to this, not only the clock time and length of consultations. Identifying temporal reference frameworks provides an understanding that there are multiple times and exposes the influence of these in the lives of both the older people and GPs.

The extent and cost of potentially avoidable admissions in hospital inpatients with palliative care needs: a cross-sectional study

Objective More than 90% of people spend time in hospital in the last year of life and, in many developed countries, hospitals are the setting in which most people will die. Previous research indicates that a proportion of these hospital admissions could have been avoided. The objective of this study was to establish the extent and cost of potentially avoidable hospital admissions among patients with palliative care needs. Methods A prospective survey of hospital inpatients was undertaken to identify patients who met clinical criteria indicating palliative care need. Case notes were reviewed by two expert palliative care clinicians to determine if the hospital admission was potentially avoidable. An analysis of the cost of potentially avoidable admissions compared to all other admissions for those patients identified as being in the last year of life was carried out using the statistical analysis software R V.2.15.1. Logistic regression was performed using the logit (log of OR) link. The binary outcome of the logistic regression model was a potentially avoidable admission. Results Of the 99 patients who met the criteria for palliative care need, 22 were deemed to have experienced a potentially avoidable admission. Those living in a residential aged care facility were more at risk of experiencing such admissions. The mean total cost of hospital care for those with palliative care needs was lower for those whose admission was deemed potentially avoidable. Conclusions A significant proportion of patients with palliative care needs experience a potentially avoidable admission. Although these admissions are relatively short compared to those whose admissions are unavoidable, any hospital admission impacts on the experiences of patients and families and may contribute to unnecessary hospital expenditure.

Comparison of the Adult Strabismus Quality of Life Questionnaire (AS-20) with the Amblyopia and Strabismus Questionnaire (ASQE) among adults with strabismus who seek medical care in China.

BackgroundThe impact of strabismus on visual function, self-image, self-esteem, and social interactions might decrease health-related quality of life (HRQoL). This study aimed to evaluate the psychometric properties and clinical applications of two strabismus-specific HRQoL questionnaires in the cultural context of China.MethodsThe Chinese versions of the Adult Strabismus Quality of Life Questionnaire (AS-20) and the Amblyopia and Strabismus Questionnaire (ASQE) were self-administered to 304 adults with strabismus. The Cronbach’s α coefficient was calculated to assess the internal consistency reliability. The criterion-related validity was identified by exploring Spearman’s correlation with the most widely used vision-specific quality of life questionnaire NEI-VFQ-25. One-way ANOVA was employed to examine the differences in the quality of life of strabismus patients with visually normal adults and with other eye diseases patients.ResultsSignificantly positive correlations with NEI-VFQ-25 were shown in both scales (r = 0.21 - 0.44, p <0.05, p <0.01). Both scales could distinguish individuals with strabismus from visually normal adults (p <0.001) and adults with other eye diseases (p <0.001). The overall Cronbach’s α value were 0.91 for the AS-20 and 0.89 for the ASQE; and for the subscales, the α value ranged from 0.68 to 0.90.ConclusionThis was the first cross-sectional study to compare the psychometric properties of two strabismus-targeted questionnaires, AS-20 and ASQE in the context of Chinese culture. Both AS-20 and ASQE showed satisfactory and comparable properties for measuring HRQoL in strabismus patients.

Psychosocial distress in haematological cancer survivors: An integrative review

&NA; Haematological cancers are becoming more prevalent, however, survival is also increasing. Many survivors are faced with psychosocial issues after treatment ends, and they may not receive the support they need. This review aims to examine peer reviewed literature reporting psychosocial distress faced by haematological cancer survivors in the early post‐treatment period. Database and hand searches were conducted between August and September 2015, with no year restriction. Eligible studies were those reporting on psychosocial sequelae in haematological cancer survivors up to 5 years post‐treatment. The search yielded 512 studies, of these only seven (five quantitative and two qualitative) included data that addressed psychosocial distress in early post‐treatment haematological cancer survivors. Data were thematically analysed to explore the presence and nature of distress. Most studies reported mild to moderate distress for survivors, with some evidence that younger age was an indicator of increased distress. However, predominately this review identified a gap in current literature regarding distress among this group of survivors. More research is needed to address the psychosocial issues facing this growing survivor group, to enable them to receive the support required to maintain good physical and psychological health in this period of the cancer trajectory and into the future.

A Longitudinal Study of Interactions Between Health Professionals and People With Newly Diagnosed Diabetes

PURPOSE We undertook a study to observe in detail the primary care interactions and communications of patients with newly diagnosed diabetes over time. In addition, we sought to identify key points in the process where miscommunication might occur. METHODS All health interactions of 32 patients with newly diagnosed type 2 diabetes were recorded and tracked as they moved through the New Zealand health care system for a period of approximately 6 months. Data included video recordings of patient interactions with the health professionals involved in their care (eg, general practitioners, nurses, dietitians). We analyzed data with ethnography and interaction analysis. RESULTS Challenges to effective communication in diabetes care were identified. Although clinicians showed high levels of technical knowledge and general communication skill, initial consultations were often driven by biomedical explanations out of context from patient experience. There was a perception of time pressure, but considerable time was spent with patients by health professionals repeating information that may not be relevant to patient need. Health professionals had little knowledge of what disciplines other than their own do and how their contributions to patient care may differ. CONCLUSIONS Despite current high skill levels of primary care professionals, opportunities exist to increase the effectiveness of communication and consultation in diabetes care. The various health professionals involved in patient care should agree on the length and focus of each consultation.

The effect of a gerontology nurse specialist for high needs older people in the community on healthcare utilisation: a controlled before-after study

BackgroundNurse-led models of comprehensive geriatric assessment and care coordination can improve health management as well as reduce hospitalisations for high risk community dwelling older people. This study investigated the effect on healthcare utilisation of systematic case finding to identify high risk older people in the community with a subsequent comprehensive assessment and care coordination intervention by a Gerontology Nurse Specialist based in primary care.MethodsThis was a controlled before-after study design located within primary healthcare practices in Auckland, New Zealand. An intervention model was initiated within two primary healthcare practices and involved a screening tool to identify high risk older people with succeeding gerontology nurse specialist assessment and care coordination. The comparison group included older people who received usual care at three comparable primary healthcare practices. The primary outcome measure was acute hospital admissions. Secondary outcomes included hospital re-admissions, length of stay, emergency department presentations, residential care admissions, and community contacts.ResultsA total of 579 older people were posted the screening tool in the intervention group, with 517 completed screens (89% response rate) formulating the intervention group. A total of 101 older people were identified as high risk from these screens (20%). The comparison group comprised 883 older people. Comparing the intervention and comparison group, no statistical differences were found for hospital admissions, emergency department presentations, hospital re-admissions, length of stay, or residential care admission. Community physiotherapy showed a statistically significant increase for the intervention compared to the comparison group (p = 0.03). Non-significant findings revealed decreased risk of entering residential care and fewer frequent hospital re-admissions for the intervention group when compared with the comparison group.ConclusionsThis specialist nurse-led intervention involving comprehensive assessment and care coordination care did not appear superior to usual care, however, there is benefit to exploring a more robust randomised controlled trial design.Trial registrationRetrospectively registered on 18/09/2017 with the Australian New Zealand Clinical Trials Registry (ANZCTR). Registration number ACTRN12617001332314