Activity and advanced cancer: A grounded theory.

BACKGROUND: Cancer-related fatigue and loss of physical functioning are distressing symptoms which negatively impact the quality of life of people with advanced cancer. Physical activity has been shown to have positive effects on these symptoms in early-stage cancer, but previous research demonstrated an incongruence between people with advanced cancer's expressed interest and actual participation in a physical activity intervention. AIM: To gain an in-depth understanding of the experience of activity and quality of life in people with advanced cancer, using a classic grounded theory approach. DESIGN: Through the post-positivist lens of subtle realism, and informed by classic grounded theory methods, a two-phase, cross-sectional, qualitative study was conducted. For 7 days duration, participants wore an activPAL™ activity monitor and completed a daily record sheet, which were then used as qualitative probes for face-to-face, semi-structured interviews. SETTING/PARTICIPANTS: A total of 15 people with advanced cancer, aged 18 years or older, and with a median survival of 100 days from time of study consent, were recruited from an outpatient department of a tertiary cancer centre in Alberta, Canada. FINDINGS: Maintaining their responsibilities, no matter how small, was the prime motive for participants' behaviour. For people with advanced cancer, the minimum level of responsibility was dynamic and unique. It was achieved through a multifaceted interaction between the perceived benefits, prevailing conditions and mechanisms. CONCLUSION: This grounded theory enables understanding of activity as a mechanism through which responsibility is managed and may inform future behavioural interventions in people with advanced cancer.

Qualitative findings about stigma as a barrier to contraception use: the case of Emergency Hormonal Contraception in Britain and implications for future contraceptive interventions.

BACKGROUND: Emergency Hormonal Contraception (EHC) has been underused in Britain and internationally since its introduction. 'Stigmatisation' has been identified as one of the barriers to EHC. However, few, if any publications have focussed on the significance of this factor in the British context, the social meanings for women of seeking EHC and the implications for future contraceptive provision and innovation. METHOD: In-depth qualitative material from 27 women across two British studies was analysed. The first, in which 11 young women were interviewed in-depth regarding EHC specifically, was supplemented by material from a multi-stage narrative study of 15 women concerning their life history experiences of using contraception more broadly. RESULTS: Stigmatisation of EHC use is a key barrier and derives from associations with irresponsible behaviour. This irresponsibility exists on a continuum with some behaviours and some women more ir/responsible than others. In addition, despite not being an abortifacient, EHC may be closely aligned with abortion meaning users can be perceived as 'bad women' in a similar way to abortion seekers. This stigma can deter participants seeking EHC when they may need it. CONCLUSION: Stigma is a powerful barrier to EHC use due to the social significance of responsibility and expectations pertaining to the behaviour of 'good women.' Understandings about stigmatisation in the case of EHC should be translated to other aspects of contraceptive service delivery and future innovations, to ensure effective provision of methods and safeguard their uptake.

More Than Words: The Use of Video in Ethnographic Research With People With Intellectual Disabilities.

There is a tendency to exclude people with intellectual disabilities from participating in research about their own lives. While the use of participatory research approaches is increasing, the methods used for engaging people with intellectual disabilities in research are generally limited to interviews and focus groups. Yet a focus on the spoken or written word can present a challenge for those who may prefer to use alternative forms of communication. The purpose of this article is to share the methodological insights gained from a visual ethnographic study that sought to explore the experiences of people with intellectual disabilities engaged in nature based (or "green care") therapeutic interventions for health and well-being. If used within carefully negotiated relationships, we suggest that video can be an empowering visual medium for doing research that can help to elicit the experiences of people with intellectual disabilities firsthand, without having to rely on the views and perspectives of other people.

Family carers' experiences of coping with the deaths of adults in home settings: A narrative analysis of carers' relevant background worries.

BACKGROUND: Internationally, evidence on the support needs of family carers who look after a terminally ill adult in home settings is incomplete. AIM: To illustrate the relevance of 'relevant background worries' in family carers' accounts of caring at home for a dying adult. DESIGN: A qualitative cross-sectional observational study was conducted in England, United Kingdom, in 2011-2013 on the experiences of adult family carers ( n = 59) of older dying adults (aged 50+ years) with malignant and/or non-malignant conditions. Interviews occurred post-bereavement. This article reports on a subset of participants' interview transcripts ( n = 30) where narrative analysis was undertaken. SETTING/PARTICIPANTS: Carers were interviewed in their home setting, having been purposively recruited via general practitioner practices in two study sites in England. The subset of participants ( n = 30) was purposively selected from the parent sample with reference to carers' age, relationship to the patient, family circumstances and study sites. RESULTS: Evidence is provided on the importance of what we conceptualise as carers' 'relevant background worries'; these varied in nature, significance and impact. Four case studies are presented where these worries constituted psychosocial factors that impacted on caregivers' actions and emotional well-being. Two themes are discussed: (1) whether relevant background worries are important enough to be identified and responded to and (2) how such worries could be picked up and managed by professionals. CONCLUSION: It is argued that the quality of clinical practice could be improved if specialist palliative care teams in community contexts both identified and responded to significant support needs associated with family carers' relevant background worries.

Caring for a dying spouse at the end of life: 'It's one of the things you volunteer for when you get married': a qualitative study of the oldest carers' experiences.

BACKGROUND: older people aged 80 and over are increasingly providing end-of-life care to spouses at home and often do so for long periods of time, while also trying to manage their own illnesses and disabilities. Little of the research on older spousal carers has focussed on the oldest carers; hence, the needs of this particular population are not fully known. OBJECTIVE: to explore the experiences of the 'oldest carers' in caring for a dying spouse at home. METHODS: secondary analysis was undertaken on a subset of data from a larger qualitative interview study; this dataset comprised 17 interviews from participants aged 80 or over. Framework analysis methods were used, with items derived from the thematic analysis of the main study. RESULTS: the oldest carers in this subset demonstrated high levels of resilience and the ability to adapt to their caring role. Caring until death was accepted as an integral part of the commitment made to their partner as part of the 'wedding contract'. Carers felt they benefitted from the support provided by family, friends and care services; however, their own care needs were not always recognised by health and social care services. CONCLUSIONS: these findings underscore the complexity of the oldest carers' experiences and challenges in times of illness and end of life. Healthcare professionals should be alerted to the myriad ways caregiving is enacted in serious illness and seek opportunities for developing supportive interventions specifically for older carers.

Military healthcare professionals' experience of transitioning into civilian employment: A heuristic inquiry.

BACKGROUND: Armed forces are reinventive institutions that shape the identity of their members. Leaving the military involves an adjustment to civilian employment that may be turbulent at times. OBJECTIVE: The aim is to understand the experiences of self and other military healthcare professionals' midlife career transitions. METHODS: This qualitative study applied heuristic inquiry research methods. This included a thematic analysis of the researcher's personal experience (diary and reflections) combined with data from interviews or communication with other veterans (n = 10) within a creative synthesis. RESULTS: The themes identified within the study were: The tipping point for leaving; adjustment as a veteran; progression within a new workplace. We experienced a divergence in values away from military service leading to a tipping point for leaving that was followed by a triple whammy of uncertainty about leaving, insecurity in a new job, and loss of identity that impacted mental wellbeing and needed to be overcome. CONCLUSION: This study has revealed new insights about being a military veteran and transitioning to civilian employment. These insights could lead to changes in how veterans prepare for a midlife career change, retention of personnel within military forces, and how civilian employers support veterans.

The perspectives of bereaved family carers on dying at home: the study protocol of 'unpacking the home: family carers' reflections on dying at home.

BACKGROUND: Recent end of life care policy prioritises patient choice over place of care and in particular promotes dying at home. This policy is predicated on the assumption that there are family carers able and willing to provide care for the dying person. Through the accounts of bereaved family members, the 'Unpacking the home' study aims to gain an in-depth understanding of 'home' and the issues faced by family members caring for a dying older person at home; it also aims to examine the way the home is transformed in the process of providing end of life care, and offer a critical analysis of policies that aim to increase home deaths. This paper presents the protocol for this study. METHODS/DESIGN: A cross-sectional qualitative study has been designed to achieve the study aims. In-depth interviews will be conducted in the north and south of England with 50 bereaved family carers to elicit their accounts of witnessing the dying in the home of an older person (50+ years). All interviews will be subjected to thematic analysis, and narrative analysis will be undertaken on a subset of 30 interview transcripts. A final phase of integration and policy analysis will be conducted towards the end of the study. User involvement is integral to this study, with service users actively engaged at every stage. DISCUSSION: This study will seek to take a qualitative approach by explicitly recognising that family carers are central to the experience of dying at home for older people, and they have needs that may be amenable to support and anticipatory planning. The strengths of this study, which include its interdisciplinary and participatory approach, and in-depth data collection and analysis methods, will be explored. The limitations and challenges of this research will also be considered. This study seeks to make recommendations that will ensure that family carers receive appropriate and adequate support in caring for their loved ones at the end of life.

Wilderness as therapeutic landscape in later life: Towards an understanding of place-based mechanisms for wellbeing through nature-adventure activity.

While there is considerable evidence that therapeutic landscapes have a positive impact on wellbeing, we know little about the mechanisms through which this impact occurs. In this paper we go some way toward addressing this gap. Drawing on in-depth interviews with 12 people aged between 52 and 75 years of age, who are engaged in nature-adventure activity in the UK, we focus on what they understand by 'wilderness'; their experiences of nature-adventure in wilderness settings; and the impact of these experiences on their wellbeing. Moving beyond the largely behavioural focus of laboratory-based studies prevalent within environmental psychology, we highlight the importance of understanding the role of the contextual in the therapeutic relationship. That is, how relational, embodied, social, lifecourse and/or cultural factors that are constitutive of wilderness environments impact wellbeing for those engaged in nature-adventure activity in later life. In doing so, we map out a working model of the mechanisms that impact wellbeing within this context. Our data suggest that there is no one single mechanism, rather we need to think about a range of mechanisms, often operating across a series of spectra (active/passive; safety/risk; alone/socially etc) and importantly, each are connected to place. Hence, we suggest, that where that activity takes place is instrumental for wellbeing.

Self-Efficacy of Older People Using Technology to Self-Manage COPD, Hypertension, Heart Failure, or Dementia at Home: An Overview of Systematic Reviews.

BACKGROUND AND OBJECTIVES: Although telehealth research among the general population is voluminous, the quality of studies is low and results are mixed. Little is known specifically concerning older people and their self-efficacy to engage with and benefit from such technologies. This article reviews the evidence for which self-care telehealth technology supports the self-efficacy of older people with long-term conditions (LTCs) living at home. RESEARCH DESIGN AND METHODS: Following Preferred Reporting Items for Systematic Reviews and Meta-Analyses Statement (PRISMA) guidelines, this overview of systematic reviews focused on four LTCs and the concept of "self-efficacy." Quality was appraised using R-AMSTAR and study evaluation was guided by the PRISMS taxonomy for reporting of self-management support. Heterogeneous data evidencing technology-enhanced self-efficacy were narratively synthesized. RESULTS: Five included articles contained 74 primary studies involving 9,004 participants with chronic obstructive pulmonary disease, hypertension, heart failure, or dementia. Evidence for self-care telehealth technology supporting the self-efficacy of older people with LTCs living at home was limited. Self-efficacy was rarely an outcome, also attrition and dropout rates and mediators of support or education. The pathway from telehealth to self-efficacy depended on telehealth modes and techniques promoting healthy lifestyles. Increased self-care and self-monitoring empowered self-efficacy, patient activation, or mastery. DISCUSSION AND IMPLICATIONS: Future research needs to focus on the process by which the intervention works and the effects of mediating variables and mechanisms through which self-management is achieved. Self-efficacy, patient activation, and motivation are critical components to telehealth's adoption by the patient and hence to the success of self-care in self-management of LTCs. Their invisibility as outcomes is a limitation.

Therapeutic landscape experiences of everyday geographies within the wider community: A scoping review.

As community dwelling populations of older people and those living with chronic and life limiting conditions continue to grow, the role of everyday geographies, particularly of community based settings and activities, in supporting health and wellbeing has become a focus in both research and policy development. The therapeutic landscape scholarship provides a holistic view of how place promotes health and wellbeing, and has in recent years expanded its focus from reputable places of healing to everyday geographies. Based on a scoping review of 45 studies on everyday community based therapeutic landscapes, this paper identifies and critically examines the settings, populations and mechanisms of therapeutic experiences. It presents critical summaries of the scales and boundaries of landscapes; the diverse and dichotomous characteristics of places; the therapeutic benefits of proximal and distal socio-spatial interactions; the role of everyday settings and activities as sources of refuge, anchor and resonance and finally the broader social, cultural, political and economic contexts in which everyday therapeutic landscapes are embedded. In so doing the paper highlights the complex nature of everyday therapeutic landscape experiences and how this research can further inform the development of community based settings and activities that promote health and wellbeing. It also identifies areas for future research on everyday therapeutic landscapes.

The role of combinatorial health technologies in supporting older people with long-term conditions: Responsibilisation or co-management of healthcare?

Neoliberalism, austerity and health responsibilisation are increasingly informing policies and practices designed to encourage older patients to take responsibility for the management of their own healthcare. Combined with an ageing population, novel ways to address the increasing healthcare needs of older people have become a priority, with the emergence in recent years of new models of integrated care enhanced by combinatorial health technologies (CHTs). This paper presents qualitative findings from the evaluation of one programme, the Lancashire and Cumbria Innovation Alliance (LCIA) Test Bed, a programme funded by NHS England and conducted in England between 2016 and 2018. Drawing on data from patients, family carers, and staff members involved in the programme, this paper explores the extent to which CHTs, as part of the LCIA Test Bed programme, contributed to health responsibilisation amongst older people with complex health conditions. Through this programme, we find that relationships between patients, family carers and healthcare professionals combined to create a sense of reassurance and shared responsibility for all parties. Our findings suggest the need for a more nuanced approach to responsibilisation and self-management for older people living with complex health conditions. By focusing on co-management - and recognising the potential of CHTs to facilitate this approach - there is potential to increase patient confidence in managing their health condition, reduce carer burden, and enhance clinician satisfaction in their work roles. While neoliberal agendas are focused on self-management and self-responsibility of one's own health care, with technology as a facilitator of this, our findings suggest that the successful use of CHTs for older people with complex health conditions may instead be rooted in co-management. This paper argues that co-management may be a more successful model of care for patients, carers and clinicians.

The benefits of community-based participatory arts activities for people living with dementia: a thematic scoping review.

BACKGROUND: The drive towards living well with dementia has resulted in a growing recognition of the value of community-based participatory arts activities. This review aimed to explore their overall impact and holistic benefits for people with early to moderate stages of dementia. METHODS: Using a scoping review methodology and thematic analysis, this review explored relevant literature published between 2008 and 2019. RESULTS: 26 published papers were identified, comprising visual arts, literary arts, comedy, music and dance. The key themes included person-centred, in-the-moment approaches; participation and communication; attention and cognition; social cohesion and relationships; and the role of space, place and objects. CONCLUSIONS: There is strong evidence in support of using participatory arts for dementia, regardless of art form. In-the-moment and person-centred approaches were deemed impactful. Further research is needed to explore the importance of setting, material culture and the methodological or theoretical perspectives in participatory arts and dementia research.

Placing therapeutic landscape as theoretical development in Health & Place.

This commentary reviews the development and application of therapeutic landscape ideas as they have appeared and developed within issues of Health and Place to date. This framework builds on landscape ideas drawn from humanist and structuralist influences in the 'new' cultural geography and seeks to deepen interpretation of the therapeutic reputation of certain places. These ideas have gained particular traction within health geography. We identified 119 papers published within Health and Place that have invoked the term in their titles and/or key words. Close scrutiny of these papers identified three main themes: spaces of care, mobile experiences of therapeutic places; and applications reaching beyond the Anglo-American world. Drawing on extracts from a 2017 exchange with Wilbert Gesler, who developed the construct, we note that some work in this field has drifted significantly from the tripartite foundations of therapeutic landscape he initially identified. We highlight the importance of maintaining the integrity of this foundation while recognising the value of new thinking that has usefully extended the concept around relationality and enabling (human and non-human) resources. We conclude that some applications of therapeutic landscape thinking have reached well beyond its intended scope, resulting in a dilution of the construct's interpretive power. Nevertheless its influence within health geography has been potent. Specifically, it has been a theoretical pivot facilitating methodological experimentation and diversification; allowed a return of the idiographic tradition; and offered a platform from which deeper theorising has occurred.

Health geography and the 'performative' turn: making space for the audio-visual in ethnographic health research.

The purpose of this paper is to critically reflect on the added value of video in ethnographic research that seeks to understand peoples' lived experiences of health and place. Of particular interest is the potential for video to elicit the embodied, multisensory and relational nature of people's place experiences that are the focus of much recent health geography research. We draw on our experiences of using video in an ethnographic study that sought to explore the experiences of people with intellectual disabilities engaged in nature based (or 'green care') therapeutic interventions for health and wellbeing. We argue that video has the potential to capture aspects of people's wellbeing experiences that may be lost using other methods, such as observational field noting. Consideration is also given to how researchers using video methods should seek to (re)present people's wellbeing experiences, as well as the practical and ethical challenges that this approach has for those working in the field of health geography.

Therapeutic spaces of care farming: Transformative or ameliorating?

Since Wil Gesler's earliest articulation (Gesler, 1992; Gesler, 1996) key thinkers in the field of therapeutic landscapes have sought to emphasise the embodied, contextual and wholly relational nature of the relationship that exists between people and place. However, the extant research has tended to focus on the relational healing experience as this occurs 'in the moment' and with reference to a specific location or site of healing, with less attention being paid to what happens to people when they return to their ordinary or everyday places. In this paper, we reflect on findings from visual ethnographic work (including photography and film) that explored the therapeutic landscape experiences of people with intellectual disabilities engaged in care farming interventions for health and wellbeing. The study also recruited farm staff and family members or carers to take part, and comprised 20 participants in total. Having identified a gap in our understanding, consideration is given to wider impact that engaging in these sorts of activities had on the everyday lives of the participants in this study. We argue that this study has identified two types of therapeutic journey that broadly fit the experiences of study participants. The first type of journey denotes landscape experiences that are transformative. Here the therapeutic power of the care farm landscape resides in the ability of activities conducted on care farms to influence other aspects of participants' lives in ways that promote wellbeing. By contrast, there is another type of journey where the therapeutic power of the care farm resides in its ability to ameliorate challenging or harmful life situations, thus offering people a temporary site of respite or refuge. We conclude that these findings denote an important development for this sub-field of health geography, not only because they draw attention to the transformative power of the therapeutic encounter, but also the broader socio-spatial environments in which people live and ways in which these can limit that power.

How effective and cost-effective are innovative combinatorial technologies and practices for supporting older people with long-term conditions to remain well in the community? An evaluation protocol for an NHS Test Bed in North West England.

INTRODUCTION: The Lancashire and Cumbria Innovation Alliance (LCIA) Test Bed is a partnership between the National Health Service in England, industry (led by Philips) and Lancaster University. Through the implementation of a combination of innovative health technologies and practices, it aims to determine the most effective and cost-effective ways of supporting frail older people with long-term conditions to remain well in the community. Among the Test Bed's objectives are to improve patient activation and the ability of older people to self-care at home, reduce healthcare system utilisation, and deliver increased workforce productivity. METHODS AND ANALYSIS: Patients aged 55 years and over are recruited to four cohorts defined by their risk of hospital admission, with long-term conditions including chronic obstructive pulmonary disease, dementia, diabetes and heart failure. The programme is determined on an individual basis, with a range of technologies available. The evaluation is adopting a two-phase approach: phase 1 includes a bespoke patient survey and a mass matched control analysis; and phase 2 is using observational interviews with patients, and weekly diaries, action learning meetings and focus groups with members of staff and other key stakeholders. Phase 1 data analysis consists of a statistical evaluation of the effectiveness of the programme. A health economic analysis of its costs and associated cost changes will be undertaken. Phase 2 data will be analysed thematically with the aid of Atlas.ti qualitative software. The evaluation is located within a logic model framework, to consider the processes, management and participation that may have implications for the Test Bed's success. ETHICS AND DISSEMINATION: The LCIA Test Bed evaluation has received ethical approval from the Health Research Authority and Lancaster University's Faculty of Health and Medicine Research Ethics Committee. A range of dissemination methods are adopted, including deliberative panels to validate findings and develop outcomes for policy and practice.

Restorative places or scary spaces? The impact of woodland on the mental well-being of young adults.

In recent years, there has been a substantial increase in mental health problems amongst young adults in the UK, prompting the British Government to seek to identify services and preventative measures to combat the problem. At the same time, the policy agenda around woodland has shifted away from the agro-forestry agenda that dominated much of the late 20th century toward the development of 'social forestry', defined in terms of multi-purpose, multi-benefit woodland that can contribute to an enhanced quality of life and well-being. Against this background of change and policy response, this paper examines the extent to which childhood experiences of play--particularly in wooded landscapes--may influence access to woodland in young adulthood, and the potential implications for their health and mental well-being. Engaging with notions of restoration and therapeutic landscapes literatures, the paper maintains that we cannot accept uncritically the notion that the natural environment is therapeutic. Indeed, from this paper it is clear that a range of influences acts to shape young people's relationship with woodland environments, but not all of these influences do so in positive ways.

Caring for older people in the 21st century: 'notes from a small island'.

Drawing on carer narratives from research undertaken in New Zealand, this paper considers the interrelationship between place and the care-giving experience. In doing so, it considers: first, how informal carers of older people experience the transition in the place of care from the home to care homes; second, how they negotiate new identities for themselves as carers in these new care settings; and third, carers' views on how we might develop more inclusive models of care in care home settings. While much current work on care-giving in the home highlights the blurring of the boundaries between formal and informal care-giving, this paper suggests that the blurring of the boundaries of care may also be manifest in an increased penetration of informal care-giving within the semi-public space of the residential care home.

Care, coping and identity: Older men's experiences of spousal care-giving.

In this paper, we draw on narrative correspondence from older male spousal caregivers and interviews with care providers from the voluntary and statutory sectors to explore how older male carers in the UK cope with and experience care-giving, the forms of support they draw upon, and how this impacts on their sense of self and identity as older men. We also consider how (or if) gender plays a part in shaping the forms of formal care support extended to male carers. We conclude, that how older men construct and perform care-giving, and how the wider family and community respond to older men as carers, can impact on how they perform masculinity. This in turn can contribute to a decline in their social networks and opportunities for sociability, leading to increased loneliness and social isolation. Such insights are important if we are to enrich our knowledge of the challenges they face, the coping mechanisms they employ, and the extent to which their support needs are met in their caring role. WHAT IS KNOWN ABOUT THE TOPIC.

Unpacking the impact of older adults' home death on family care-givers' experiences of home.

Public Health England (2013) survey data indicates that while the place of death is geographically uneven across England, given a choice, many older people nearing end of life would prefer to die at home. There is, however, a growing critique that policies designed to support home death fail to understand the needs and preferences of older people and the impact on family carers. Such policies also make assumption about within whose home the home death takes place. Hence, there are major gaps in our understanding of firstly, where and how care work undertaken by family members within domestic settings takes place; and secondly, how it can create tensions between home and care that fundamentally disrupt the physical and socio-emotional meaning of home for family carers, impacting on their sense of home post-death. This can have consequences for their own well-being. In this paper we draw on interview data from our 'Unpacking the Home' study to elicit an in-depth understanding of how facilitating a home death can create an ambiguity of place for family carers, where the issues faced by them in caring for a dying older person at home, and the home death itself, can fundamentally reshape the meaning and sense of home.