Objective: Chronic physical health problems are on the rise. Psychological interventions can play a role in helping people cope with the challenges that long term physical conditions brings. This thesis systematically reviewed the literature for group psychological interventions. Following this, an Acceptance and Commitment Therapy group intervention for people living with a range of long term physical conditions was designed and evaluated. Methods: Key databases were searched for relevant randomized-controlled studies. Papers that met inclusion criteria were quality assessed, and a meta-analysis was conducted. Participants with chronic physical health conditions were invited to an Acceptance and Commitment Therapy group (n=53). Measures were completed at assessment, pre, post and 3-month follow-up. These assessed anxiety and depression symptoms, health perceptions, values-based living and psychological flexibility. Assessment to pre-intervention served as a within-participant control. Results: 22 relevant studies were retrieved, with 18 rated as acceptable or high quality and 14 included in a meta-analysis. The majority of studies reported interventions as efficacious at reducing mental health problems, though effect sizes were weaker when compared to active controls such as education. In the Acceptance and Commitment therapy group, depression and anxiety symptoms reduced significantly from pre to post, compared to control period. Conclusions: Group psychological interventions may be beneficial for people with physical health problems. In particular, group-based ACT interventions may be effective with this population and can be delivered transdiagnostically for a range of physical conditions.

Objective(s). An increasing demand exists for psychological interventions to increase recovery from depression and anxiety in people with long-term physical health conditions (LTCs). Guided self-help (GSH) may meet this need, however, there is limited evidence of GSH’s appropriateness for people with LTCs. Design. A mixed-methods study using qualitative interviews with people with stroke and Chronic Obstructive Pulmonary Disease (COPD), and a quantitative survey of professionals who support guided self-help, explored opinions about whether self-help is appropriate, and whether suggested adaptations varied across LTCs. Results. Opinions varied about the appropriateness of standard self-help and adaptations required. Illness beliefs may help explain differences between the two LTCs and individual interviewees. The majority of professionals surveyed felt competent supporting people with LTCs, and reported having access to appropriate self-help material. Conclusions. Recommendations for improving the appropriateness of contents of guided self-help for people with LTCs are provided. Supporting professionals need relevant knowledge and skills to integrate information about the LTC into the intervention, and offer flexible, personalised delivery to support participation.

This thesis follows the research portfolio format and is carried out in part fulfilment of the academic component of the Doctorate in Clinical Psychology at the University of Edinburgh. An abstract provides an overview of the entire portfolio thesis. Chapter One contains a systematic review of published research investigating the experience of living with incurable forms of haematological malignancy. Chapter Two is an empirical study exploring adults’ experiences of living with follicular lymphoma while being maintained under the ‘watch and wait’ protocol. Both chapters are prepared for submission to the European Journal of Cancer Care, and follow their author guidelines.

Yes / Aims To examine frontline staff acceptance of telehealth and identify barriers to and enablers of successful adoption of remote monitoring for patients with Chronic Obstructive Pulmonary Disease and Chronic Heart Failure. The use of telehealth in the UK has not developed at the pace and scale anticipated by policy. Many existing studies report frontline staff acceptance as a key barrier, however data are limited and there is little evidence of the adoption of telehealth in routine practice. Design Case studies of four community health services in England that use telehealth to monitor patients with Chronic Obstructive Pulmonary Disease and Chronic Heart Failure. Methods Thematic analysis of qualitative interviews with 84 nursing and other frontline staff; and 21 managers and key stakeholders; data collected May 2012–June 2013. Findings Staff attitudes ranged from resistance to enthusiasm, with varied opinions about the motives for investing in telehealth and the potential impact on nursing roles. Having reliable and flexible technology and dedicated resources for telehealth work were identified as essential in helping to overcome early barriers to acceptance, along with appropriate staff training and a partnership approach to implementation. Early successes were also important, encouraging staff to use telehealth and facilitating clinical learning and increased adoption. Conclusions The mainstreaming of telehealth hinges on clinical ‘buy-in’. Where barriers to successful implementation exist, clinicians can lose faith in using technology to perform tasks traditionally delivered in person. Addressing barriers is therefore crucial if clinicians are to adopt telehealth into routine practice. / Technology Strategy Board and the Economic and Social Research Council

The concurrent experience of multiple health conditions (often termed multimorbidity) has become an important issue in recent years. Most research on this topic uses clinical data (e.g. GP or hospital records) that lack important socio-contextual information about the lives of people with multiple conditions. Population health surveys can help to overcome these limitations, but identifying people who have multiple conditions is problematic. Decisions need to be taken regarding what is meant by a condition, which ones should be included, and how multiple should be defined. These decisions tend to be based on what data are available, rather than on any universal inclusion criteria or theoretical underpinnings. This thesis used an approach informed by sociological theory and principles drawn from critical realist philosophy to estimate the prevalence of multiple conditions among adults (16+) in the general population, using data from the 1998 and 2008- 2011 Scottish Health Surveys. It explicitly acknowledged the multiple, contested and constructed nature of health, illness and diagnosis; the limits of empirical enquiry; and the need to approach concepts such as multiple conditions critically. To support the decision-making process, longitudinal analyses of mortality were used to examine the impact of including various contested conditions on people’s long-term chance of survival (if there was no evidence of impact then the definition was rejected). The final measure of multiple conditions arrived at suggested that 24.9% of adults had multiple conditions (compared with 17.2% using the survey’s original, unadjusted, measure). This measure was then used to explore how this status related to people’s wellbeing, which helped to highlight importance differences in experiences. Among adults with multiple conditions, 33.5% of those in the most deprived areas had low wellbeing compared with 13.5% of those in the least deprived areas. Low wellbeing was also higher among people with multiple conditions aged under 65 than those aged 65 and over, especially for those living in areas of high deprivation. There was some evidence that having multiple conditions and additional vulnerabilities (e.g. psychological distress, living in a deprived area, having activity limitations) before the age of 55 increased people’s risk of mortality, which might result in older populations appearing to have better wellbeing due to less healthy people not reaching old age. Working-age people with multiple conditions were also more likely than people of the same age with no conditions to be economically inactive, to not live in an owner-occupied property, and not have a co-resident partner. All of which suggest that poor health at younger ages limits access to the social and economic norms enjoyed by most people. The approach adopted arguably helped to avoid over-classifying largely healthy people as having multiple conditions, while still ensuring that people’s own perspectives on their health were not under-privileged with respect to more traditional biomedically-focused approaches. However, it was also clear that the experiences of adults with multiple conditions are highly varied, and in particular, socially stratified. This heterogeneity has implications for research in this field, as well as clinical practice and public health policy. Recommendations for better reflecting this diversity in future studies included collecting more measures of functional capacity, aspirations, illness experiences, and social stressors (such as financial insecurity).

Long-term conditions (LTCs) such as diabetes, cardiovascular diseases, respiratory diseases and cancers are recognised as the greatest challenge facing public healthcare systems globally in the 21st century. Healthcare provision for people with LTCs is shifting towards a model that puts patients at the centre of their own care through supported self-care. Self-care support has emerged as a distinct concept in the management of LTCs and is now considered an inseparable component of high quality healthcare provided by healthcare professionals. People with LTCs are regular users of community pharmacy where dispensing and other services provide opportunities for self-care support. While self-care support as a concept has been explored extensively in health disciplines like nursing, medicine and health psychology, there is a paucity of published literature in community pharmacy. The main aim of this programme of work was to explore the place and contribution of community pharmacy in self-care support of LTCs. A preliminary scoping literature review captured and synthesised the overarching components of self-care support of LTCs into a single theoretical framework consisting of collaborative care planning, self-care information and advice, self-care skills support and training, self-care support networks and self-care technology. The research programme of work employed a mixed methods design consisting of three Work Streams. The qualitative arm of the programme consisted of semi-structured interviews with 24 patients with LTCs and 24 community pharmacists in England and Scotland; these informed the quantitative arm, which was a cross-sectional, online survey of 10,000 community pharmacists in England. The survey instrument was informed and developed from the findings of the pharmacists’ interviews in combination with existing literature. Data collection and analysis in the three work streams incorporated the theoretical framework of self-care support. The qualitative data analyses were undertaken thematically, while quantitative data were analysed using a range of descriptive and inferential statistics. Interviews with patients explored their ‘lived experience’ with LTCs and found that self-care was an integral part of daily living; patients engaged in self-care in a variety of ways to attain normality in their lives. Patients used a wide range of resources for self-care support; family/carers, friends and healthcare professionals (mainly doctors and nurses). Patients viewed and used community pharmacy mainly for the supply of prescribed medicines and suggested that community pharmacy played minimal roles in self-care support. The interviews and survey of community pharmacists showed that pharmacists recognised the broad range of activities and principles of self-care. However, in terms of pharmacists’ contributions to self-care support, their perspectives were narrower and focussed on providing information and advice on medicines-use to patients, while other activities such as lifestyle advice were provided opportunistically. They indicated that they were already providing medicines-focussed self-care support through the services available in community pharmacy. The theoretical framework allowed detailed exploration of how community pharmacists operationalised the different elements of self-care support of LTCs. Collaborative care planning was viewed as important but not within the remit of community pharmacy. Self-care information and advice was unidimensional and provided opportunistically and one-off, using the paternalistic biomedical model. Pharmacists valued the roles of patients’ personal communities but were not proactive in signposting to other support networks. Self-care skills training and support and the use of self-care technologies were limited. Barriers to providing self-care support were priority accorded to dispensing activities, the structure of the community pharmacy contract, lack of incentives to provide self-care support and patients’ expectations and lack of awareness of community pharmacy’s role in LTCs management. The theoretical framework of self-care support of LTCs provided novel insights into the perspectives of patients and community pharmacists. The findings highlighted the need for a coherent LTC strategy if community pharmacy is to align with the self-care support paradigm. Recommendations are made for a comprehensive package of care, underpinned by self-care support. A case is also made for incorporating the often ‘unheard’ patient voice into community pharmacy research and interventions.

This thesis presents a qualitative multiple case study which examines the early implementation of the community matron policy in three primary care trusts in England. The community matron was a new role in nursing, introduced by the Department of Health in 2004, as part of its strategy for the management of long term conditions (DH, 2005e). There was a paucity of research literature underpinning the policy and the implementation of the community matron role in England. A descriptive multiple case study was used as it generates a richness of data using multiple data collection methods, ideally positioned to investigate phenomena in context and contemporaneously. In addition to documentary material, 49 participants were recruited across the three case study sites, from community matrons, active case managers, health and social care colleagues and patients. A total of 30 interviews, 33 observations and one focus group were undertaken between 2006 and 2008. Framework Analysis was used to interpret the data and critical sensemaking was applied as a heuristic to gain insight into the findings.This study explored the early role implementation from the perspective of the community matron. It found that the community matron role had been adopted with regard to the national model but there was variation in its implementation between case study sites, seen in service structures, eligibility criteria and caseload management. Practitioners had exercised professional discretion to flex local service models to fit their ways of practice and professional decision making, although this may not have been conscious behaviour. They also expanded the role to include psychosocial support, beyond the nationally defined functions. Advanced practice was integral to the role; whilst there appeared to be a medical influence on this aspect of role development; practitioners had adopted traditionally medical tasks and incorporated them into nursing practice, making such roles their own. Community matrons described experiencing resistance to the role initially from some district nurses and GPs, outlining how they adopted strategies to address these and promote acceptance of the role. As such, individual community matrons were the key change agents. They experienced dissonance between organisational values and professional values, which they addressed by reinterpreting collective targets such as reducing hospital admissions into individual patient outcomes related to improved quality of life. Critical sensemaking gives a unique perspective on the implementation of national policy, through the lens of the community matron, highlighting the experience of nursing role development at an individual and team level, and the ways in which variation can occur. Further research is needed into nursing policy implementation to better understand the processes at play nationally and organisationally. Critical sensemaking might be used to inform how implementation can be effective and sustainable.

Background: Evidence from the employee perspective frequently suggests that unsupportive managerial relations present a considerable barrier to those with long-term health conditions (LTCs) both on their ability to sustain employment and manage their condition at work. However, little is empirically known about employers’ and managers’ experiences of supporting those with LTCs, or indeed about their perception of their supportive role in the social context of the workplace on which employees suggest they depend for workplace success. This presents a disparity in understanding the contribution of the management role in influencing the (re)entry process to employment for those with LTCs. This is important to explore in light of ongoing objectives by the UK Government to move people with LTCs off incapacity benefits and back into the labour force, as any successful return to work will largely be influenced by employers’ and managers’ readiness to support them. Method: A qualitative approach informed by Grounded Theory principles to guide data collection and analysis was taken for this 3½ year study (September 2009 to March 2013). 40 semi-structured in-depth interviews were conducted with employers and managers from a range of organisations in the North West of England and analysed thematically. Findings were interpreted in relation to a framework of sociological theories of emotion and work. Results: Regardless of industry type, sector and size or condition, several themes emerged which contributed to a sense of burden and tension for participants in supporting those with LTCs. These included discerning legitimacy and tangibility of conditions, having difficult conversations with employees and the influence of the employees’ personality on support. More significantly, all bar one participant typified their role as one of a difficult ‘balancing’ act of additional and often incompatible demands, pressures and feelings arising from managing a complex and emotive situation many considered non-normative to their everyday role. This was typified by feelings of conflict and emotional discomfort, interpreted as ambivalence, stemming from contradictions between and within the normative expectations of their social roles and appropriate feeling rules. For example between the obligations of the professional ‘public’ managerial role in providing value to the organisation, and philanthropic concerns for the welfare of the employee concomitant with their personal ‘private’ role as an individual. Interpreted from a combination of both spoken word and ‘unsaid’ gestures, is the emotion management conducted by managers to cope with negative feelings of ambivalence in a culture which favours rationality over emotionality. Conclusion: Overall, findings indicate that participants in this study concur with the employees’ perspective as to the importance of socially supportive managerial relations. However, it is theorised that managing the emotions of ambivalence serves to undermine manager’s capacity to translate intention to provide support into tangible action, and hence is reflected in the employee’s perception of unsupportive relations. It is suggested that this research could be used to inform the development of a potential intervention to support managers in their pivotal role in the return-to-work process, being beneficial for all stakeholders - the Government, employees and employers alike.

Yes / Adoption of telehealth has been slower than anticipated, and little is known about the service improvements that help to embed telehealth into routine practice or the role of frontline staff in improving adoption. This paper reports on participatory action research carried out in four community health settings using telehealth for patients with Chronic Obstructive Pulmonary Disease and Chronic Heart Failure. Methods: To inform the action research, in-depth case studies of each telehealth service were conducted (May 2012–June 2013). Each service was then supported by researchers through two cycles of action research to implement changes to increase adoption of telehealth, completed over a seven month period (July 2013–April 2014). The action research was studied via observation of multi-stakeholder workshops, analysis of implementation plans, and focus groups. Results: Action research participants included 57 staff and one patient, with between eight and 20 participants per site. The case study findings were identified as a key source of information for planning change, with sites addressing common challenges identified through this work. For example, refining referral criteria; standardizing how and when patients are monitored; improving data sharing; and establishing evaluation processes. Sites also focused on raising awareness of telehealth to increase adoption in other clinical teams and to help secure future financial investment for telehealth, which was required because of short-term funding arrangements. Specific solutions varied due to local infrastructures, resources, and opinion, as well as previous service developments. Local telehealth champions played an important role in engaging multiple stakeholders in the study. Conclusions: Action research enabled services to make planned changes to telehealth and share learning across multiple stakeholders about how and when to use telehealth. However, adoption was impeded by continual changes affecting telehealth and wider service provision, which also hindered implementation efforts and affected motivation of staff to engage with the action research, particularly where local decision-makers were not engaged in the study. Wider technological barriers also limited the potential for change, as did uncertainties about goals for telehealth investment, thereby making it difficult to identify outcomes for demonstrating the added value over existing practice. / This study was funded by a grant from the Assisted Living Innovation Platform, with support from the Technology Strategy Board and the Economic and Social Research Council.

Depression is common in people with coronary heart disease (CHD) and is associated with worse physical outcomes. The nature of the causal association between CHD and depression, and the mechanism underpinning the association of depression with worse physical outcomes, remains unclear. Perseverative negative thinking may contribute to the development of depression in people with CHD. The aim of this thesis was to investigate the prospective association of perseverative negative thinking with depression, anxiety and worse physical outcomes in people with CHD, and to explore factors that may mediate this association. First, a systematic review identified 30 studies, of which the majority found an association between measures of perseverative negative thinking and subsequent depression, anxiety or emotional distress in people with long term conditions. Studies that controlled for covariates showed more mixed results, though the majority (15 / 25) still supported a significant association, with effects being small in magnitude. Findings were limited mainly to the association of rumination and/or catastrophizing with subsequent depression, and study quality was limited. Next, in an observational prospective cohort study 169 inpatients and outpatients with recent acute coronary syndrome (ACS) completed self-report assessments of rumination (Ruminative Responses Scale brooding subscale), worry (Penn State Worry Questionnaire), depression (Patient Health Questionnaire-8), anxiety (Beck Anxiety Inventory), and health-related quality of life (EuroQol-5D health-related quality of life, Seattle Angina Questionnaire) after hospitalisation, and at 2 month and 6 month follow-up. Additionally, assessments of potential mechanistic factors (social support, problem solving, instrumental behaviours and negative cognitive biases) were made. Baseline brooding was a significant independent predictor of depression at 6 months after controlling for the effects of important confounding variables, accounting for 2% of the variance. Findings suggested that the association of brooding with depression may be explained by deficits in problem solving ability. Rumination and problem solving may provide useful targets for the development of evidence-based interventions to improve depression among people with CHD, although the findings presented here fall short of proving a causal relationship. Future trials could be used to investigate the causal nature of the association of rumination and problem solving with depression in people with ACS.