Informal carers of stroke survivors

Chapter 1 Caring is a part of life. Synopsis of chapter 1. Chapter 1 discusses why the need for help and support from another person may arise and covers related areas; the ageing of the population, trends in disability free life expectancy, health conditions associated with disability, long term care of people with disabling conditions, the need for informal care for another person, the historical roots of the word ‘carer’ and exposure to informal care and the effects on health of the care provider. Chapter 1 also presents the broad aims and objectives for this entire body of work. Chapter 2 Is informal care giving independently associated with poor health? A population-based study. Synopsis of Chapter 2. Chapter 2 focuses on the analysis of secondary data from the UK Census 2001 to quantify the magnitude of association between informal care and reported poor health in the UK population 2001. The main methods of data analysis are described. The binary logistic regression techniques are described along with the assumptions underlying the regression models. The results are presented and discussed. Abstract. Background: Providing informal care has been linked with poor health but has not previously been studied across a whole population. The aim of this study was to determine the association between informal care provision and self-reported poor health. Method: Data from the UK 2001 Census was used. The relationship between informal care giving and poor health was modelled using logistic regression, adjusting for age, sex, marital status, ethnicity, economic activity and educational attainment. Results: Data on 44,465,833 individuals free from permanent sickness or disability was included. 5,451,902 participants (12.3%) reported providing informal care to another person. There was an association between provision of informal care giving and self-reported poor health; odds ratio 1.100, 95% CI 1.096- 1.103. This association remained after adjustment for age, sex, ethnic group, marital status, economic activity and educational attainment. The strength of association also increased with the amount of care provided (hours per week). Conclusions: Informal care giving is associated with poor health, particularly in those providing over 20 hours of care per week. Chapter 3 The Glasgow Carers Cohort Study: informal care giving and risk of disease. Synopsis of Chapter 3. Chapter 3 presents the Glasgow Carers Cohort Study (GCCS). For presentation purposes Chapter 3 is split into several sections. The chapter opens with an introduction to the clinical condition of stroke including a description of the pathological and clinical definitions of stroke, the consequences of stroke, the challenges of living with stroke and the need for informal care for another person and finishes with the GCCS cohort study hypothesis and aims. The next section describes the GCCS study design, the study conduct and the data analysis. The results are presented and discussed. Abstract. Background: Adults with disability often require some form of assistance from informal carers. While being a carer can be a rewarding experience it is plausible that the demands of care-giving can result in ill health. The study of stroke survivors and their carers can inform this debate, as stroke is a leading cause of complex adult disability and many stroke survivors require input from informal carers. The aim of this study was to assess the effects of providing informal care on a group of people who provide care to stroke survivors compared to not providing informal care to anyone. Method: This was a prospective, six month study of two cohorts, one cohort of people who provided informal care to stroke survivors (exposed to care giving) and an age and sex matched random sample of a non care giving reference group from a Greater Glasgow and Clyde Health Board General practice population for comparison (non exposed). Participants in both exposed and non exposed cohorts had to be at least 16 years of age, fluent in English and free from any informal care-giving activities in excess of 20 hours per week at enrolment. The primary outcome measure was incidence of perceived stress as measured by the Perceived Stress Scale (PSS). Secondary outcomes were psychological well being, psychosomatic symptoms and depression. Results: 28 people who were identified as potential informal carers of stroke survivors were enrolled in this study and 41 age-sex matched non exposed participants were enrolled. Over 6 months of observation, 36% (9/25) of the “exposed” care giving group and 5% (2/39) of the unexposed cohort had their first occurrence of stress (PSS score ≥ 23). Participants who were exposed to providing care had lower happiness scores, mean difference -5.7 (95%CI: -8.0 to -2.5). There was no difference between groups in psychosomatic symptoms; or depression score. After adjustment for age, sex and perceived stress at baseline, informal caring was associated with a raised perceived stress odds ratio 6.26 (95% CI: 0.94 to 41.41) but this was not statistically significant (p = 0.058). Conclusions: The results of this cohort study are not conclusive. Nevertheless, they provide stronger evidence than previous studies that exposure to providing informal care to stroke survivors affects levels of perceived stress and levels of psychological well-being. Chapter 4 Incidence, prevalence and association between providing informal care to stroke survivors and depression: a systematic review and meta-analysis. Synopsis of chapter 4. Chapter 4 focuses on the analysis and evaluation of the existing epidemiological literature on the putative association between informal care and depression. For presentation purposes, this chapter is divided into several sections. The first section describes the concepts and methods that are fundamental to the epidemiologic study of informal carers and the rationale for the systematic review and meta-analysis. The second section describes the diagnostic criteria for depression and criteria for the informal care exposure and the questions being addressed. The third section describes the methods of the systematic review including types of study design, the types of participants, types of interventions, types of outcome and types of study, searching for studies, selecting studies and collecting data, assessing risk of bias in included studies and includes a description of methods for statistically summarising the results from multiple studies. The final section presents the meta-analysis of the relevant studies. The results are presented and discussed. Abstract. Background: Reliable data on the incidence and prevalence of depression in people who provide informal care to stroke survivors are useful for helping inform clinical trials, plan stroke services, inform informal caregivers and stroke survivors and for the development of good public policy. However, data on the prevalence of depression are conflicting. Moreover, prevalence of depression in people who provide care survivors does not equate to a cause and effect relationship between provision of informal care to stroke survivors and depression. Objectives: This systematic review was undertaken to 1) obtain valid and precise estimates of the occurrence of depression in people who provide informal care to stroke survivors, 2) to assess whether existing studies provide evidence of an association between provision of informal care to stroke survivors and accepted definitions of depression and to and 3) to identify factors associated with the development of depression in people who provide care to stroke survivors. Search methods: The following electronic databases were searched: MEDLINE (1950 to October 2010), EMBASE (1980 to October 2010), CINAHL (1982 to October 2010), (AMED (Allied and Complementary Medicine) (1985 to October 2010), PsycINFO (1967 to October 2010) and eight other databases. In an effort to identify further published, unpublished and ongoing studies, conference proceedings and trials registers were searched, reference lists of relevant articles were scanned and researchers and authors in the field were contacted. Selection criteria: Studies were included if the focus was on; study participants as a provider of care to a stroke survivor living in the community, had no restrictions on admissible participants, had no restrictions on type of stroke patient, depression was measured using standard criteria and measures of occurrence of depression presented in a binary format (i.e., depressed/ not depressed). Types of epidemiologic study eligible included: cohort studies, case-control studies, including prevalent case-control studies and cross sectional studies, including prevalence studies. Data collection and analysis: Two review authors selected studies for inclusion, independently extracted data and assessed methodological quality. Estimates of pooled prevalence were calculated using inverse variance methods. Results: 19 studies were identified. 12 studies used a single cohort design and six studies used a cross sectional design. One study is ongoing and awaiting assessment. No cohort studies included a referent or comparator group of people who were unexposed to providing informal care. Data on prevalence of depression were available from 16 studies (1848 participants). No studies were identified that collected data on incidence of depression. No investigators reported including participants to cohort studies that were free of depression at the initial observation. The estimates of prevalence of depression are based on the number of people who scored above a clinical cut point on a self-report dimensional rating scale for depression. The overall pooled prevalence estimate calculated using the inverse variance method using a random effects model was slightly lower (28%, 95% CI 23%, 33%) than when the analysis was restricted to studies with an ideal design (30%, 95% CI 25%, 34%). The majority of studies lack a description of important characteristics that define the informal caregiver population. Lack of a clear and unambiguous operational definition of informal care is common across studies. Conclusions: Estimates of prevalence of depression in people who provide care to informal stroke survivors are similar to those observed in community studies of the prevalence of depression. There is currently insufficient evidence from epidemiological studies to suggest and association between the provision of informal care and the development of depression. Chapter 5 Non-pharmacological interventions for informal carers of stroke survivors. Synopsis of chapter 5. Chapter 5 focuses on the analysis and evaluation of the existing literature on the effects of non pharmacological interventions targeted towards people who provide informal care to stroke survivors. For presentation purposes, this chapter is divided into several sections. Section A describes the background and rationale for the systematic review. Section B describes the methods of the review including the types of participants, types of interventions, types of outcome and types of study, searching for studies, selecting studies and collecting data, assessing risk of bias in included studies, methods for analysing data and undertaking meta-analysis. Section C presents the meta-analysis of the relevant studies. The results are presented and discussed. Abstract. Background: A substantial component of care is provided to stroke survivors by informal caregivers. However, providing such care is often a new and challenging experience and has been linked to a number of adverse outcomes. A range of interventions targeted towards stroke survivors and their family or other informal caregivers have been tested in randomised controlled trials (RCTs). Objectives: To evaluate the effect of interventions targeted towards informal caregivers of stroke survivors or targeted towards informal caregivers and the care recipient (the stroke survivor). Search methods: The Cochrane Stroke Group Trials Register (last searched March 2011), the Cochrane Central Register of Controlled Trials (CENTRAL) (The Cochrane Library Issue 4, 2010); MEDLINE (1950 to August 2010), EMBASE (1980 to December 2010), CINAHL; (1982 to August 2010), AMED (1985 to August 2010), PsycINFO (1967 to August 2010) Science Citation Index (1992 to August 2010) and six other electronic databases were searched. In an effort to identify further published, unpublished and ongoing studies, conference proceedings and trials registers were searched, reference lists of relevant articles were scanned and researchers and authors in the field were contacted. Selection criteria RCTs were included if they evaluated the effect of non-pharmacological interventions (compared with no care or routine care) on informal caregivers of stroke survivors. Trials of interventions were included if they delivered to stroke survivors and informal caregivers only if the stroke survivor and informal caregiver were randomised as a dyad. Studies which included stroke survivors and caregivers were excluded if the stroke survivors were the primary target of the intervention. Data collection and analysis: Two review authors selected studies for inclusion, independently extracted data and assessed methodological quality. Original data was sought from trialists. Interventions were categorised into three groups: support and information, teaching procedural knowledge/vocational training type interventions, and psycho-educational type interventions. The primary outcome was caregivers' stress or strain. Disagreements were resolved by consensus. Results: Eight studies, including a total of 1007 participants, met the inclusion criteria. The results of all the studies were not pooled because of substantial methodological, statistical and clinical heterogeneity. For caregivers' stress or strain no significant results were found within categories of intervention, with the exception of one single-centre study examining the effects of a 'vocational training' type intervention which found a mean difference between the intervention and comparator group at the end of scheduled follow-up of -8.67 (95% confidence interval -11.30 to -6.04, P < 0.001) in favour of the 'teaching procedural knowledge' type intervention group Conclusions: It was not possible to carry out a meta-analysis of the evidence from RCTs because of methodological, clinical and statistical heterogeneity. One limitation across all studies was the lack of a description of important characteristics that define the informal caregiver population. However, 'vocational educational' type interventions delivered to caregivers prior to the stroke survivor's discharge from hospital appear to be the most promising intervention. However, this is based on the results from one, small, single-centre study. Chapter 6 Conclusions. Synopsis of Chapter 6. This chapter, after outlining the findings of the individual studies included in this thesis and how they fit into the broader literature, makes observations about the approach that has been taken and lessons learned, some with the benefit of hindsight, in order to inform future research work on informal carers. This chapter also examines the structure, purpose, limitations, use and misuse of the informal care epidemiological literature. The chapter finishes with recommendations for future research, clinical practice and policy

Training Needs and Development of Online AT Training for Healthcare Professionals in UK and France

Background: Assistive Technology (AT) solutions for people with disabilities has become part of mainstream care provision. Despite advantages of AT on offer, abandonment and non-compliance are challenges for healthcare professionals (HCPs), introducing this technology to clients. Studies of abandonment reveal that 1/3 of all devices provided to service users end up stored unused. Key need is training to make informed decisions about AT tailored to individual needs and circumstances. In an online survey undertaken by the ADAPT project, HPCs identified AT training needs and barriers. Currently, a programme is being developed aimed at introducing AT concepts and enhancing practices to a wide range of HCPs. Method: Survey questions explored gaps, availability, qualifications and barriers to AT training in England and France. A series of consultation meetings with ADAPT partners took place. An advisory group consisting of longstanding AT users and their formal/informal carers and HCPs (occupational therapist, speech and language therapist, psychologist and biomedical engineer) contributed to the discussions on survey findings, development and evaluation of AT training for HCPs, key content areas and means of delivery. Key results: HCPs had no AT specific qualifications (UK 94.6%; FR 81.3%) nor in-service AT training (UK 65.1%; FR 66.4%). They either did not know of AT courses (UK 63.3%) or knew that none existed (FR 72.5%). Barriers to AT training were mainly local training (UK 62.7%, FR 50%) and funding (UK 62.7%, FR 55.7%). Some training priorities were clearer for French HCPs – overall knowledge of AT devices (82.1%, UK 45.8%), customization of AT (65.3%, UK 30.1%), assessing patient holistically (53.4%, UK 25.3%), educating patient/carers (56.5%, UK 28.3%) (p < 0.001). Variances may be due to differing country-specific HCP education approach. A third of both groups highlighted also abandonment, client follow-up, powered wheelchair training and prescribing AT. To bridge gaps in knowledge and identified training needs of HCPs, the online interactive training programme starts by introducing foundations of AT, including definitions, types/uses of AT, legislation/policies and AT in practice. More specialist units build and expand on specific areas, e.g. AT for mobility, communication, assessment and evidence-based practice. The biopsychosocial model of Health and World Health Organisation’s (WHO) International Classification of Functioning, Disability and Health (ICF) framework underpin development of content. ICF shifts focus from disability to health and functioning, in line with a social model of rehabilitation. E-learning comprises existing videos, AT textbook material and bespoke animated presentations. Selfassessment and evaluation of training are embedded and learners receive certificate of completion. Training was piloted to a group of HCPs trainees and postregistration HCPs who commented on relevance of AT content, clarity, accessibility of presentation, and usefulness. Users found training very useful, especially legislation/policies and AT literature. Conclusion: Overall, survey results suggest that both UK and French HCPs’ training on AT solutions is limited and highly variable. There is need for crosschannel AT professional competencies, availability of work-based training and funding support. Development of online, interactive training aims to increase professional confidence and competence in this area as well as the evidence base for AT