Peer education for advance care planning: volunteers’ perspectives on training and community engagement activities

Background Peer education by volunteers may aid attitudinal change, but there is little understanding of factors assisting the preparation of peer educators. This study contributes to conceptual understandings of how volunteers may be prepared to work as peer educators by drawing on an evaluation of a training programme for peer education for advance care planning (ACP). Objectives To report on volunteers’ perspectives on the peer education training programme, their feelings about assuming the role of volunteer peer educators and the community engagement activities with which they engaged during the year after training. To examine broader implications for peer education. Design Participatory action research employing mixed methods of data collection. Participants Twenty‐four older volunteers and eight health and social care staff. Data collection methods Evaluative data were gathered from information provided during and at the end of training, a follow‐up survey 4 months post‐training; interviews and focus groups 6 and 12 months post‐training. Findings Volunteers’ personal aims ranged from working within their communities to using what they had learnt within their own families. The personal impact of peer education was considerable. Two‐thirds of volunteers reported community peer education activities 1 year after the training. Those who identified strongly with a community group had the most success. Conclusion We reflect on the extent to which the programme aided the development of ‘critical consciousness’ among the volunteers: a key factor in successful peer education programmes. More research is needed about the impact on uptake of ACP in communities.     

Self‐reported care needs of Dutch homeless people with and without a suspected intellectual disability: a 1.5‐year follow‐up study

Cognitive impairment is a prevalent problem among the homeless and seems related to more psychosocial problems. However, little is known about the care needs of the subgroup of homeless people with an intellectual disability compared to those without an intellectual disability and how their care needs develop over time. This study explores self‐reported care needs within a broad range of life domains among Dutch homeless people with and without a suspected intellectual disability to gain insight into the transition of self‐reported care needs from baseline to follow‐up in both subgroups. This longitudinal study is part of a cohort study among homeless people who had been accepted for an individual programme plan in four major Dutch cities. The initial cohort consisted of 513 participants who were interviewed in 2011. At 1.5‐year follow‐up, 336 participants (65.5%) were also interviewed and screened for intellectual disability. Of these participants, 31% (95% CI 26.2–36.1) had a suspected intellectual disability. For both groups, between baseline and follow‐up, the number of ‘unmet care needs’ decreased significantly and the number of ‘no care needs’ increased significantly, while at follow‐up, participants with a suspected intellectual disability reported ‘no care needs’ on significantly fewer life domains than those without a suspected intellectual disability (mean numbers 16.4 vs. 17.5). Between baseline and follow‐up, ‘met care needs’ decreased significantly on housing for both groups, and increased on finances and dental care for participants with a suspected intellectual disability. At follow‐up, participants with a suspected intellectual disability more often preferred housing support available by appointment than those without a suspected intellectual disability. These findings suggest that homeless people who had been accepted for an individual programme plan with a suspected intellectual disability have care needs for a longer period of time than those without a suspected intellectual disability. Providing care to homeless people with a suspected intellectual disability might require ongoing care and support, also after exiting homelessness. Support services should take this into account when considering their care provision and planning of services.     

Differential impacts of care‐giving across three caregiver groups in Canada: end‐of‐life care,long‐term care and short‐term care

Using data from Statistic Canada's General Social Survey Cycle 21 (GSS 2007), this study explores whether differences exist in the impacts of care‐giving among three groups of caregivers providing informal care either in the caregiver's or recipient's home, or in other locations within the community: (i) those providing end‐of‐life (EOL) care (n = 471); (ii) those providing long‐term care (more than 2 years) for someone with a chronic condition or long‐term illness (n = 2722); and (iii) those providing short‐term care (less than 2 years) for someone with a chronic condition or long‐term illness (n = 2381). This study lays out the variation in sociodemographic characteristics across the three caregiver groups while also building on our understanding of the differential impacts of care‐giving through an analysis of determinants. All three groups of caregivers shared a number of sociodemographic characteristics, including being female, married, employed and living in a Census Metropolitan Area (CMA). With respect to health, EOL caregivers were found to have significantly higher levels of ‘fair or poor’ self‐assessed health than the other two groups. Overall, the findings suggest that EOL caregivers are negatively impacted by the often additional role of care‐giving, more so than both short‐term and long‐term caregivers. EOL caregivers experienced a higher proportion of negative impacts on their social and activity patterns. Furthermore, EOL caregivers incurred greater financial costs than the other two types of informal caregivers. The impacts of EOL care‐giving also negatively influence employment for caregivers when compared with the other caregiver groups. Consequently, EOL caregivers, overall, experienced greater negative impacts, including negative health outcomes, than did long‐term or short‐term caregivers. This provides the evidence for the assertion that EOL care‐giving is the most intense type of care‐giving, potentially causing the greatest caregiver burden; this is shown through the greater negative impacts experienced by the EOL caregivers when compared with the short‐term and long‐term caregivers.     

Paediatric spinal fusion surgery and the transition to home‐based care: provider expectations and carer experiences

There are more than 12 million children with special healthcare needs (CSHCNs) in the United States, many of whom require specialised health‐care to treat chronic physical and developmental conditions. This study is a qualitative investigation of programme, surgical and at‐home recovery experiences among CSHCNs and their family carers who participated in a spine surgical care programme at a paediatric hospital in the Western United States. The programme is designed to manage increased surgical risk and the transition of care from hospital to home for children with severe scoliosis undergoing spinal fusion surgery. We conducted 30 semi‐structured in‐depth interviews with 14 surgical team members and 16 family carers of children who had programme evaluations and spinal surgeries in 2006. Data were collected in 2008 and 2009 in hospital or at home locations to gather programme participation feedback from families and inform the adequacy of programme support to families during at‐home recovery. Data were analysed by reflexive team and content analysis methodologies. Results showed the programme was effective at improving preoperative surgical evaluation and helping families to anticipate some aspects of the surgical experience and hospital discharge. However, the impact of spinal fusion surgery and the subsequent transition to home‐based care was profoundly emotional for patients and their carers. Our data indicate that programme providers underestimated the extent of emotional trauma experienced by patients and families, particularly during the at‐home recovery process. The data also suggest meaningful differences in providers' and carers' expectations for surgery. Carers' disappointment with their recovery experiences and the perceived lack of post‐discharge support impacted their interpretations of and perspectives on their surgical experience. Implications of this research for surgical care programmes include the need for assessment and provision of support for physical, social, and emotional burdens experienced by patients and carers at pre‐surgical, surgical and at‐home recovery phases.     

Transition to adult care: experiences and expectations of adolescents with a chronic illness

Background Effective means of transitioning adolescent patients with chronic illness from paediatric to adult medical care are poorly documented and supported by limited evidence. The purpose of this study is to describe expectations and concerns of adolescents with chronic illness regarding transition from subspecialty paediatric to adult‐centred care during the transition process in order guide effective programme design and implementation. Methods Qualitative content and thematic analysis of semi‐structured individual interviews with 22 adolescents with chronic illness, including cystic fibrosis, sickle cell disease, juvenile rheumatoid arthritis, and inflammatory bowel disease. Interviews took place at 1–3 time points over an 18‐month study period. Results Transition topics included: timing of transfer to adult care, the transition process, attitudes about transition, and factors that might aid transition. During the study period, one‐third of participants made the transition to adult‐oriented health care. All participants who had transitioned to adult‐oriented care reported participating in a structured transition programme. Concerns of those who had not initiated the transition process centred on re‐establishing relationships and bringing a new team ‘up to speed’. Most adolescents anticipating transfer to adult care identified only downsides and felt unprepared to transition at the time of the interview. Subjects who had transitioned noted benefits of the adult‐oriented system, even if they had been ambivalent prior to transfer of care. Participants suggested that earlier discussions about transition, opportunities to meet new healthcare teams and visits to adult‐oriented venues prior to transition might aid in the transition process. Conclusions Subspecialty paediatric providers should anticipate common fears and concerns of adolescents and discuss the benefits of transfer to adult‐oriented care. Further evaluation of existing transition programmes is an area for future study and is necessary for improvement of the continuum of care for adolescents with chronic medical conditions.     

Living and dying: responsibility for end‐of‐life care in care homes without on‐site nursing provision ‐ a prospective study

The aim of the study was to describe the expectations and experiences of end‐of‐life care of older people resident in care homes, and how care home staff and the healthcare practitioners who visited the care home interpreted their role. A mixed‐method design was used. The everyday experience of 121 residents from six care homes in the East of England were tracked; 63 residents, 30 care home staff with assorted roles and 19 National Health Service staff from different disciplines were interviewed. The review of care home notes demonstrated that residents had a wide range of healthcare problems. Length of time in the care homes, functional ability or episodes of ill‐health were not necessarily meaningful indicators to staff that a resident was about to die. General Practitioner and district nursing services provided a frequent but episodic service to individual residents. There were two recurring themes that affected how staff engaged with the process of advance care planning with residents; ‘talking about dying’ and ‘integrating living and dying’. All participants stated that they were committed to providing end‐of‐life care and supporting residents to die in the care home, if wanted. However, the process was complicated by an ongoing lack of clarity about roles and responsibilities in providing end‐of‐life care, doubts from care home and primary healthcare staff about their capacity to work together when residents’ trajectories to death were unclear. The findings suggest that to support this population, there is a need for a pattern of working between health and care staff that can encourage review and discussion between multiple participants over sustained periods of time.     

A meta‐analysis of case‐control studies examining sporadic campylobacteriosis in Australia and New Zealand from 1990 to 2016

Objective : We conducted a meta‐analysis of case‐control studies to identify locally relevant risk factors for sporadic campylobacteriosis in Australia and New Zealand. Methods : We searched Medline, Web of Science, ProQuest and Google Scholar using PRISMA guidelines. Reference lists and grey literature were hand‐searched. Meta‐analyses were conducted in the R package ‘metafor’ using published odds ratios and 95% confidence intervals. Results : We identified 325 articles, from which we included 10 that described case‐control studies. Four risk factors were statistically significant in the meta‐analysis: eating undercooked poultry (OR=4.28, 95%CI 3.09–5.93); eating poultry cooked outside the home (OR=2.13, 95%CI 1.66–2.72); having pet chickens (OR=3.29, 95%CI 2.12–5.10); and overseas travel (OR=5.55, 95%CI 3.20–9.63). Among children, having pet dogs showed elevated but not significant risk (OR=1.57, 95%CI 0.99–2.49). Conclusions : We identified consumption of chicken meat and contact with domestic chickens as important risk factors for campylobacteriosis in Australia and New Zealand. Implications for public health : While consumption of chicken meat is a well‐known risk factor for campylobacteriosis, zoonotic transmission is often overlooked. This research indicates a greater need for public health awareness surrounding zoonotic campylobacteriosis, especially for young children.     

What constitutes ‘good care’ and ‘good carers’? The normative implications of introducing reablement in Danish home care

As populations worldwide are ageing, Western welfare states are currently implementing welfare reforms aimed at curbing the rising need for social and healthcare services for ageing populations. A central element in home‐care reforms in several welfare countries is reablement: short‐term home‐based training programmes aimed at re‐enabling older people to live in their own homes independently of care. In this paper, we explore how transitioning from compensatory care to reablement care is not merely a practical process, but also a deeply normative one. Drawing on Annemarie Mol's concept of ‘ontonorms’ we analyse the normative dynamics involved in transitioning from one form of care to another as reflected in reablement professionals' practices and discourses. The paper draws on 10 months of multisited ethnographic fieldwork carried out from April 2015 to February 2016 in a Danish municipality, including participant observations of reablement practices as well as qualitative interviews with 13 professionals working with reablement. We demonstrate that professionals generally consider reablement to represent a desirable shift in home care from ‘bad care’ practices of making people passive through compensatory care, towards ‘good care’ practices of ‘keeping people going’ despite their limitations. Moreover, we demonstrate that while therapists are valued as ‘good carers’ due to their ability to focus on development and training, nurses and in particular home helpers are devalued as ‘bad carers’ due to their ‘caring genes’ and lack of technical and theoretical skills necessary for documentation work. Finally, we discuss the implications of these normative dynamics, which may risk stigmatising compensating care practices, although this form of care to a large extent continues to coexist with reablement practices. In conclusion, we argue for a more nuanced approach to care, recognising compensatory care and reablement as complementary forms of care, each doing good under different circumstances.     

An evaluation of the effectiveness of engaging Canadian clients as partners in in‐home care

This exploratory quasi‐experimental evaluation assessed the effectiveness of the use of a concrete discussion guide to promote organisation‐wide application of a partnering approach to engage older home‐care clients with chronic disease/disabilities as care partners. A post‐test‐only design with an independent pre‐test sample was used to compare selected outcomes with those of standard in‐home care. The theoretically informed discussion guide portrayed how to go about the process of empowering partnering by using language and open‐ended conversational leads to construct partnering, partnering effort and health as a resource for everyday living through social interaction. The discussion guide was provided to all providers for use with all clients in one home‐care programme in Ontario, Canada and this organisation was compared with a similar but geographically distanced organisation, also in Ontario. Seven hundred and ninety‐one randomly selected clients (mean age = 72.5 years) receiving 3+ months of in‐home care for chronic conditions/disabilities from the two home‐care programmes between September 2007 and May 2010 completed a researcher‐administered questionnaire at either baseline, 1 year or 2 years. Instruments included the Client's Partnering Experience, Health‐Promoting Partnering Effort, a modified version of Locus of Authority in Decision‐Making, the Medical Outcomes Survey Self‐Rated Health Scale, Health and Social Services Utilization and a modified Functional Independence Measure. Analysis of covariance revealed that the use of the concrete discussion guide to promote organisation‐wide application of a partnering approach achieved significantly greater client partnering experience and health‐promoting partnering effort over time than did the usual approach to in‐home‐care interactions. Using the discussion guide enhanced client/provider partnering, hence, interdependence, contributing positively to promoting clients' health as a resource for everyday living.     

Descriptive study of carers' support,encouragement and modelling of healthy lifestyle behaviours in residential out‐of‐home care

Objective: Given the high prevalence of overweight/obesity among young people in residential out‐of‐home care (OOHC), and as their carers are in loco parentis, this research aimed: 1) to examine the healthy lifestyle cognitions and behaviours of residential carers; and 2) to describe resources needed to improve diet and/or physical activity outcomes for residents. Methods: Cross‐sectional data were collected from 243 residential carers. Measures included: demographics; knowledge of dietary/physical activity recommendations; self‐reported encouragement/importance of health behaviours; physical activity/screen time (at work); unit ‘healthiness’; and necessary resources for creating a healthy environment. Results: Staff placed importance on the residents eating well and being physically active. However, examination of carer knowledge found significant gaps in staff education. Three key priority areas were identified to help build a healthy food and activity environment in residential OOHC: funding, professional development and policy. Conclusion: Carer knowledge of healthy lifestyles can be improved and they need to be well resourced to ensure children in public care settings live in a healthy environment. Implications: These findings may inform the development of ongoing professional development to improve carers' health literacy, as well as policy to support dietary/activity guidelines for the OOHC sector.     

Organising through compassion: The introduction of meta‐virtue management in the NHS

This paper investigates the comprehensive compassionate care reform programme within the National Health Service (NHS) in England. Through a synoptic reading of policy documents, we show how ‘compassion’ is introduced as an overarching meta‐virtue designed to govern relationships and formal positions in health care. Invoking an ‘ethics of office’ perspective, mainly drawing on the thinking of Max Weber, we evaluate the promotion of compassion as a managerial technology and argue how seemingly humanistic and value‐based approaches to healthcare management might have unintended consequences for the quality of care and the conduct of health professionals that in some ways resemble and in some ways exceed those of the more traditional New Public Management measures, which the new compassion paradigm is expected to outdo. In the paper's final sections, we turn to the original work of the nursing icon Florence Nightingale to argue that compassion and other virtues should continuously be formulated and re‐formulated in relation to the role‐specific skills and duties of particular offices in the healthcare sector.     

A systematic narrative review of consumer‐directed care for older people: implications for model development

Consumer‐directed care is increasingly becoming a mainstream option in community‐based aged care. However, a systematic review describing how the current evaluation research translates into practise has not been published to date. This review aimed to systematically establish an evidence base of user preferences for and satisfaction with services associated with consumer‐directed care programmes for older people. Twelve databases were searched, including MedLine, BioMed Central, Cinahl, Expanded Academic ASAP, PsychInfo, ProQuest, Age Line, Science Direct, Social Citation Index, Sociological Abstracts, Web of Science and the Cochrane Library. Google Scholar and Google were also searched. Eligible studies were those reporting on choice, user preferences and service satisfaction outcomes regarding a programme or model of home‐based care in the United States or United Kingdom. This systematic narrative review retrieved literature published from January 1992 to August 2011. A total of 277 references were identified. Of these 17 met the selection criteria and were reviewed. Findings indicate that older people report varying preferences for consumer‐directed care with some demonstrating limited interest. Clients and carers reported good service satisfaction. However, research comparing user preferences across countries or investigating how ecological factors shape user preferences has received limited attention. Policy‐makers and practitioners need to carefully consider the diverse contexts, needs and preferences of older adults in adopting consumer‐directed care approaches in community aged care. The review calls for the development of consumer‐directed care programmes offering a broad range of options that allow for personalisation and greater control over services without necessarily transferring the responsibility for administrative responsibilities to service users. Review findings suggest that consumer‐directed care approaches have the potential to empower older people.     

‘That would have been beneficial’: LGBTQ education for home‐care service providers

This paper reports qualitative findings from a pilot study that explored the lesbian, gay, bisexual, transgender and queer (LGBTQ) education needs of home‐care service providers working in one large, urban Canadian city. The pilot study builds upon research that has documented barriers to health services for diversely situated LGBTQ people, which function to limit access to good‐quality healthcare. LGBTQ activists, organisations and allies have underscored the need for health provider education related to the unique health and service experiences of sexual and gender minority communities. However, the home‐care sector is generally overlooked in this important body of research literature. We used purposeful convenience sampling to conduct four focus groups and two individual interviews with a total of 15 professionally diverse home‐care service providers. Data collection was carried out from January 2011 to July 2012 and data were analysed using grounded theory methods towards the identification of the overarching theme, ‘provider education’ and it had two sub‐themes: (i) experiences of LGBTQ education; and (ii) recommendations for LGBTQ education. The study findings raise important questions about limited and uneven access to adequate LGBTQ education for home‐care service providers, suggest important policy implications for the education and health sectors, and point to the need for anti‐oppression principles in the development of education initiatives.     

Multivariate meta‐analysis of prognostic factor studies with multiple cut‐points and/or methods of measurement

A prognostic factor is any measure that is associated with the risk of future health outcomes in those with existing disease. Often, the prognostic ability of a factor is evaluated in multiple studies. However, meta‐analysis is difficult because primary studies often use different methods of measurement and/or different cut‐points to dichotomise continuous factors into ‘high’ and ‘low’ groups; selective reporting is also common. We illustrate how multivariate random effects meta‐analysis models can accommodate multiple prognostic effect estimates from the same study, relating to multiple cut‐points and/or methods of measurement. The models account for within‐study and between‐study correlations, which utilises more information and reduces the impact of unreported cut‐points and/or measurement methods in some studies. The applicability of the approach is improved with individual participant data and by assuming a functional relationship between prognostic effect and cut‐point to reduce the number of unknown parameters. The models provide important inferential results for each cut‐point and method of measurement, including the summary prognostic effect, the between‐study variance and a 95% prediction interval for the prognostic effect in new populations. Two applications are presented. The first reveals that, in a multivariate meta‐analysis using published results, the Apgar score is prognostic of neonatal mortality but effect sizes are smaller at most cut‐points than previously thought. In the second, a multivariate meta‐analysis of two methods of measurement provides weak evidence that microvessel density is prognostic of mortality in lung cancer, even when individual participant data are available so that a continuous prognostic trend is examined (rather than cut‐points). © 2015 The Authors. Statistics in Medicine Published by John Wiley & Sons Ltd.     

Twelve‐month post‐injury outcomes for Māori and non‐Māori: findings from a New Zealand cohort study

Objective : To examine the prevalence of key outcomes among Māori and non‐Māori 12 months post‐injury, and to estimate the risk of these outcomes for Māori compared to non‐Māori. Methods : The Prospective Outcomes of Injury Study recruited 2,856 New Zealand residents from five regions of New Zealand. This paper examines outcomes at 12 months post‐injury for the Māori (n=405) and non‐Māori (n=1,875) groups. Results : High levels of adverse outcomes at 12 months post‐injury were observed in both groups. A greater proportion of Māori than non‐Māori were experiencing disability, problems with mobility and psychological distress 12 months post‐injury. After controlling for pre‐injury and injury‐related characteristics, Māori were found to be at greater risk of disability, problems with mobility, having trouble performing usual activities, psychological distress and reporting ‘barely/not enough’ household income at 12 months compared to non‐Māori. Conclusion : Explanations for higher risk of these poor outcomes are unclear. Future research to identify potential explanations will include experiences with health services and rehabilitation support following injury, subsequent injury and illness, and major life events post‐injury. Implications : Adequate post‐injury care focused on physical and psychological health and financial security is required to reduce the burden experienced by Māori due to injury.     

The development of a transition medical home utilizing the individualized transition plan (ITP) model for patients with complex diseases of childhood

BackgroundAdvances in medicine and technology, have enabled greater numbers of children with complex illness to survive into adulthood. Adolescents with these conditions are at high risk for adverse outcomes when transitioning to adult health care. The “Staging Transition for Every Patient” (STEP) Program was developed to systematically improve the transition from pediatric to adult healthcare.ObjectiveThis article details the development of the STEP program and the novel use of “Individualized Transition Plans” (ITP) in the clinic setting.MethodsA provider needs’ assessment of the existing transition services among youth with specific diagnoses was performed, a steering committee was developed that created a transition policy, and a medical home within the adult system was established with an interdisciplinary approach. The ITP focuses on 5 individualized goals, it was developed and tested with the first-year cohort of patients.ResultsIn the initial needs assessment, 7 of 35 diagnoses were found to have an effective transition plan. The STEP program partnered with departments across the adult facility to conduct 267 interdisciplinary patient visits. In the first year, 169 new patients were seen in the clinic. The average age was 23.0 ± 4.1 years old. The ITP goals included referrals to adult specialists, advanced care planning, career and education, transition readiness, caregiver burden, and an emergency sick plan.ConclusionThere is a need for organized transition care for medically complex youth. The STEP program answers that need by addressing the unique needs of each patient. Individualized transition planning builds trust and addresses multiple domains of health.