Kerry Jones

Is volunteering a public health intervention? A systematic review and meta-analysis of the health and survival of volunteers

BackgroundVolunteering has been advocated by the United Nations, and American and European governments as a way to engage people in their local communities and improve social capital, with the potential for public health benefits such as improving wellbeing and decreasing health inequalities. Furthermore, the US Corporation for National and Community Service Strategic Plan for 2011–2015 focused on increasing the impact of national service on community needs, supporting volunteers’ wellbeing, and prioritising recruitment and engagement of underrepresented populations. The aims of this review were to examine the effect of formal volunteering on volunteers’ physical and mental health and survival, and to explore the influence of volunteering type and intensity on health outcomes.MethodsExperimental and cohort studies comparing the physical and mental health outcomes and mortality of a volunteering group to a non-volunteering group were identified from twelve electronic databases (Cochrane Library, Medline, Embase, PsychINFO, CINAHL, ERIC, HMIC, SSCI, ASSIA, Social Care Online, Social Policy and Practice) and citation tracking in January 2013. No language, country or date restrictions were applied. Data synthesis was based on vote counting and random effects meta-analysis of mortality risk ratios.ResultsForty papers were selected: five randomised controlled trials (RCTs, seven papers); four non-RCTs; and 17 cohort studies (29 papers). Cohort studies showed volunteering had favourable effects on depression, life satisfaction, wellbeing but not on physical health. These findings were not confirmed by experimental studies. Meta-analysis of five cohort studies found volunteers to be at lower risk of mortality (risk ratio: 0.78; 95% CI: 0.66, 0.90). There was insufficient evidence to demonstrate a consistent influence of volunteering type or intensity on outcomes.ConclusionObservational evidence suggested that volunteering may benefit mental health and survival although the causal mechanisms remain unclear. Consequently, there was limited robustly designed research to guide the development of volunteering as a public health promotion intervention. Future studies should explicitly map intervention design to clear health outcomes as well as use pragmatic RCT methodology to test effects.

Vitamin D and cognitive function

Abstract The role of vitamin D in skeletal health is well established, but more recent findings have also linked vitamin D deficiency to a range of non-skeletal conditions such as cardiovascular disease, cancer, stroke and metabolic disorders including diabetes. Cognitive impairment and dementia must now be added this list. Vitamin D receptors are widespread in brain tissue, and vitamin Ds biologically active form [1,25(OH)2D3] has shown neuroprotective effects including the clearance of amyloid plaques, a hallmark of Alzheimers Disease. Associations have been noted between low 25-hydroxyvitamin D [25(OH)D] and Alzheimers disease and dementia in both Europe and the US. Similarly, the risk of cognitive impairment was up to four times greater in the severely deficient elders (25(OH)D < 25 nmol/L) in comparison with individuals with adequate levels (≥ 75 nmol/L). Further studies have also shown associations between low 25(OH)D concentrations and cerebrovascular events such as large vessel infarcts, risk of cerebrovascular accident and fatal stroke. Cross-sectional studies cannot establish temporal relationships because cognitive decline and the onset of dementia itself may influence vitamin D concentrations through behavioural and dietary changes. However, two large prospective studies recently indicated that low vitamin D concentrations may increase the risk of cognitive decline. Large, well designed randomized controlled trials are now needed to determine whether vitamin D supplementation is effective at preventing or treating Alzheimers disease and dementia.

‘I Know Where this is Going and I Know it won’t Go Back’ Hearing the Individual’s Voice in Dementia Quality of Life Assessments

While it is generally agreed that any appraisal of quality of life should as far as possible rely on the individual’s own perspective, having people with dementia evaluate their own quality of life remains a much-debated issue. This article reports findings from a longitudinal study (ENABLE) designed to examine the impact of assistive technology on persons with dementia and their family caregivers. The study’s methodology sought to empower people with dementia by engaging them in the research process. Both quantitative and qualitative data on quality of life were collected from a sample of 92 persons with dementia before and after assistive technologies were introduced into their homes. This article presents preliminary baseline data on quality of life prior to when the home interventions (technologies) were introduced. Results demonstrate that people with dementia can competently participate in research on dementia and have more positive appraisals of their lives, roles and relationships than might be expected.

Ethical Considerations in the ENABLE Project

This article describes the ethical considerations and the framework that formed the basis for the design of the research methods, as well as the basis for choosing the devices to be tried out, in the ENABLE project. The principles of autonomy, beneficence and justice are defined and applied to an analysis of researchers’ experience. Some of the ethical difficulties arising from conducting an intervention study of this type with persons with dementia are outlined. The article needs to be read in conjunction with the other ENABLE articles published in this issue of Dementia.

Development of a protocol for the assessment of assistive aids for people with dementia

Assistive aids can support some people with dementia in their daily life. Examples are devices designed to facilitate time orientation, use the telephone, and cooker monitors that switch the gas off in case of over-heating. However, there is a dearth of knowledge about the feasibility of using different assistive aids and how to assess the usefulness of such products to the patient and the carer, as well as their costs and benefits for society. This article describes the development of a protocol for a multinational assessment study of different assistive aids to be used by people with dementia living in their own home. Experiences of using the protocol are also reported in this article. This work is part of the ENABLE project.

End of life care: A scoping review of experiences of Advance Care Planning for people with dementia:

Despite increasing attention given to dementia by international governments and policy makers, the focus of end of life care has been on the dying trajectory of malignant disease. People with severe dementia have complex physical and psychological needs, yet the disease is not always recognised as terminal. Advance Care Planning involving people with dementia and their families can provide opportunities to discuss and later, initiate timely palliative care. We conducted a scoping review of studies exploring decisions associated with the EoLC of people with dementia. Eligible studies had to report on decision making at the end of life and by whom (the dying person, clinician/health professional or relative/family member). Twenty-five eligible studies reported on Advance Care Planning and end of life care decisions for individuals with dementia. The papers highlight several challenges that need to be addressed in order to provide adequate and effective care for people with dementia as they near the end of their life.

Dying well with reduced agency: a scoping review and thematic synthesis of the decision-making process in dementia, traumatic brain injury and frailty

BackgroundIn most Anglophone nations, policy and law increasingly foster an autonomy-based model, raising issues for large numbers of people who fail to fit the paradigm, and indicating problems in translating practical and theoretical understandings of ‘good death’ to policy. Three exemplar populations are frail older people, people with dementia and people with severe traumatic brain injury. We hypothesise that these groups face some over-lapping challenges in securing good end-of-life care linked to their limited agency. To better understand these challenges, we conducted a scoping review and thematic synthesis.MethodsTo capture a range of literature, we followed established scoping review methods. We then used thematic synthesis to describe the broad themes emerging from this literature.ResultsInitial searches generated 22,375 references, and screening yielded 49, highly heterogeneous, studies that met inclusion criteria, encompassing 12 countries and a variety of settings. The thematic synthesis identified three themes: the first concerned the processes of end-of-life decision-making, highlighting the ambiguity of the dominant shared decision-making process, wherein decisions are determined by families or doctors, sometimes explicitly marginalising the antecedent decisions of patients. Despite this marginalisation, however, the patient does play a role both as a social presence and as an active agent, by whose actions the decisions of those with authority are influenced. The second theme examined the tension between predominant notions of a good death as ‘natural’ and the drive to medicalise death through the lens of the experiences and actions of those faced with the actuality of death. The final theme considered the concept of antecedent end-of-life decision-making (in all its forms), its influence on policy and decision-making, and some caveats that arise from the studies.ConclusionsTogether these three themes indicate a number of directions for future research, which are likely to be applicable to other conditions that result in reduced agency. Above all, this review emphasises the need for new concepts and fresh approaches to end of life decision-making that address the needs of the growing population of frail older people, people with dementia and those with severe traumatic brain injury.

Addressing Decision Making on End of Life Care for People with Dementia

Dementia affects approximately 36 million people worldwide and the number living with dementia is expected to increase to 66 million by 2030 [1]. Dementia is recognised as a public health priority which urgently needs attention by the World Health Organisation [2]. Despite recent national and international policy initiatives, people with dementia continue to receive invasive treatment such as artificial nutrition and hydration and inadequate care towards the end of their lives [3]. In our scoping review of decision making and advanced care planning for people with dementia, we outline some of the challenges of decision making that people with people with dementia, their families and health professionals face in talking about a complex and sensitive issue.

By the way knowledge: grandparents, stillbirth and neonatal death

Abstract Over the past 50 years, academic interest in the experiences of parents who lose a baby to stillbirth or neonatal death has grown. Stillbirth is defined in the UK as the death of a baby after 24 weeks’ gestation and neonatal death is death within the first 4 weeks of life. Less is known about the experience of grandparents after such an event. As grandparents might expect to play an important role in their putative grandchilds life, including the provision of childcare to support parental employment, it seems likely that the babys death will impact upon them. We argue that existing academic knowledge of grandparents’ experiences of reproductive loss is ‘by the way’ knowledge, garnered incidentally from other research projects, for example, losing a grandchild per se or where researchers have interviewed grandparents as part of wider family research. The experience of grandparents who lose a grandchild at or around the time of birth should not go unnoticed. Research into their experiences can inform about the place in the family, if any, that is afforded to the unborn child before birth and whether, like fathers and the siblings of babies who have died, grandparents are also ‘forgotten mourners’.

Adopting a Reflexive Approach to Researching Sensitive Subjects: Parental Experiences of Stillbirth and Neonatal Death

In this article I am going to discuss the challenge in researching sensitive subjects and some of the ways this can be overcome by adopting a reflexive approach to conducting qualitative research. These particular challenges are detailed in relation to data collected from in-depth interviews from men and women bereaved by the death of their child following stillbirth and neonatal death. I discuss how a reflexive approach when combined with a voice centred relational method to analyse data, can be used to manage both the breadth and depth of the data as well as unearthing some of the ways in which men and women contextualised their experiences in relation to aspects of their lived biography. I propose that these combined approaches permit an explicit account of how the analysis was conducted and critically, how the researcher impacts upon the research process and product.