- Title
- Exploring the long-term experience of psychological morbidity in community-dwelling stroke survivors
- Creator
- White, Jennifer H.
- Relation
- University of Newcastle Research Higher Degree Thesis
- Resource Type
- thesis
- Date
- 2014
- Description
- Research Doctorate - Doctor of Philosophy (PhD)
- Description
- Background: Psychological morbidities such as post-stroke depression (PSD) and anxiety are common following stroke, and may influence the stroke survivors’ ability to engage in rehabilitation processes. This in turn results in reduced rehabilitation gains and long-term outcomes. Longitudinal studies are essential for documenting the course and prognosis of PSD, and other psychological morbidities, and for establishing causality in the relationships between stroke, functional recovery, depression, anxiety and quality of life (QoL). Qualitative studies are invaluable in exploring the lived experience of people with chronic illness such as stroke. To date, there have been only limited longitudinal studies of PSD and no longitudinal qualitative studies of PSD or psychological morbidity post stroke. Therefore, research undertaken for this thesis involved a longitudinal study into psychological morbidity in community-dwelling stroke survivors, using both qualitative and quantitative methods. Aim: The primary aim of the quantitative study was to establish baseline clinical, functional and psychosocial factors associated with anxiety and depression during the 12 months following stroke. The qualitative aim of this study was to explore the longitudinal patterns of post-stroke psychological morbidity, and particularly to establish disease trajectories. Methods: This study used a prospective, mixed-methods design, including concurrent quantitative data collection and in-depth, semi-structured qualitative interviews. Quantitative surveys were administered at baseline (as close to stroke onset as possible), 3, 6, 9, and 12 months. Qualitative semi-structured interviews explored participants’ experience of psychological morbidity. Inductive thematic analysis of participant interviews resulted in key themes concerning participants’ perceptions of the experience of psychological morbidity at baseline, three, six, nine and 12 months. Interviews at baseline were conducted until thematic saturation (a situation of no new themes emerging) was achieved according to the core objective. However additional themes emerged in subsequent interviews and our methodology provided the scope to undertake further purposive sampling to explore the additional post-stroke experiences including distress concerning return to driving and participation, fatigue and urinary incontinence. Quantitative and qualitative data were separately analysed and then considered together during a mixed methods analysis phase. Setting: Metropolitan Newcastle, New South Wales, Australia. Subjects: Participants in the quantitative study were patients admitted to one of two Newcastle hospitals and having a diagnosis of stroke. Participants in the qualitative study were a purposively sampled sub-set of the participants in the quantitative study. Recruitment and sampling: Quantitative. Potential participants were identified from consecutive admissions to two out of three of the tertiary referral centres in Newcastle, NSW (Calvary Mater Hospital and Belmont District Hospital). The cases were defined by the following factors: admission to hospital and history and examination consistent with stroke as determined by a stroke physician. Brain imaging was available to aid diagnosis in 91% of cases. Patients with haemorrhagic stroke were included. Participants were excluded if they had significant language or cognitive impairment. Participants were recruited to the study between December 2007 and December 2011. Qualitative: Purposive maximum-variation sampling of qualitative participants for baseline interviews considered variation in age, gender, living situation, type of stroke, level of disability (ranging from mild to moderate) and depression scores (case and non-case). Main Outcome Measures and Analysis: Quantitative. Valid and reliable measures documented physical and psychosocial function at baseline, three, six, nine and 12 months. The primary quantitative outcome measures were depression and anxiety, measured using the Hospital Anxiety and Depression Scale: (HADS). Secondary outcomes were disability, measured using the modified Rankin Scale (mRS); health related quality of life (HRQoL), measured using the Assessment of Quality of Life (AQoL); social support, measured using the Multidimensional Scale of Perceived Social Support (MSPSS); and community participation, measured using the Adelaide activities profile (AAP). The researchers analysed univariate associations between anxiety and depression and demographic variables using t-tests for depression and anxiety as continuous variables, and chi-squared tests when depression and anxiety were treated as categorical variables. Baseline predictors of depression, anxiety and HRQoL over time, were analysed using linear mixed models with exchangeable correlation structures, using continuous HADS Total, HADS-D, HADS-A or HRQoL scores as the outcome variable. For baseline predictors of dichotomised depression status or anxiety status, as the outcome variable, logistic regression with repeated measures was accounted for using generalised estimating equations (exchangeable correlation structures were used). Patients needed to have at least two follow-up time points to be included in this analysis. Qualitative. The qualitative study explored participant perceptions of experiences of psychological morbidity. Data analysis involved an inductive thematic approach with constant comparison. Results: There were 134 participants at baseline (mean age of 75 (SD 12); 52% females), with 110 participants in the quantitative cohort retained at the 12 month interview. The qualitative sample included 23 participants (13 men and 10 women with an age range of 37−94). Participants in the qualitative study completed 106 interviews over 12 months. Findings from the results are presented as seven separate analyses (2 quantitative, 5 qualitative), these being the content of the seven journal papers on which this thesis is based. Quantitative papers: Analysis 1 (quantitative analysis) established predictors of anxiety and depression over time. Anxiety (but not depression) scores, improved over time. Anxiety scores post-stroke were positively associated with PSD (p < .0001), anxiety at baseline (p < .0001) and less disability (p = .0423). PSD was associated with anxiety (p < .0001), depression at baseline (p = .0057), low social support (p = .0161) and low community participation (p < .0001). The only baseline factor predicting the resolution of PSD (if the participant was depressed at baseline) was increased social support (p = .0421). Baseline factors that predicted the onset of depression (if the participant was not depressed at baseline) were low community participation (p = .0015) and higher disability (p = .0057). These findings suggest a need for the organisation of services to address social isolation and community participation in patients post-stroke. Analysis 2 (quantitative analysis) established the experience of HRQOL over time. Higher HRQoL scores during follow-up were associated with participants having good HRQoL at baseline (p = 0.0321), younger age (p = 0.0059), lower disability (p = 0.0032), greater community participation (p = <.0001) and not having a previous history of depression (p = 0.0316). Contrary to previous literature, none of the participants rated their HRQoL close to or lower than zero, indicating that no one rated their disability as worse than death. Qualitative Papers: Analysis 3 (qualitative analysis) identified four different longitudinal trajectories post stroke including: resilience (n = 5), ongoing crisis (n = 5), emergent mood disturbance (n = 3) and recovery from mood disturbance (n = 10). Illness trajectories after stroke are a useful way to conceptualize and understand the pattern of psychological morbidity in stroke over time. Our results suggest that although screening for depression and other psychological morbidity may be valuable after a stroke, other clinical cues, such as reports of life-stress and impaired self-esteem, may increase sensitivity of detection. Supplementary interviews based on emergent themes formed the basis of additional analyses: Analysis 4 (qualitative analysis) explored return to driving and community access. Driving issues after stroke had a significant impact on ongoing adjustment to stroke. Participants received inconsistent advice regarding return to driving. Confidence and availability determined public transport use. The provision of information concerning processes for return to driving or alternates to driving should be incorporated into health systems approaches to in-hospital management, discharge planning and post-discharge follow-up care. Further interventions are required that help stroke survivors deal with changes after stroke such as maintaining mobility, confidence, and fitness to drive (or to access public transport). Analysis 5 (qualitative analysis) explored the experience of post stroke fatigue. The results of this study suggest that in spite of reasonable objective physical recovery post-stroke, fatigue in community dwelling stroke survivors continues to be a problem post discharge and resulted in role loss. The time taken to adjust to fatigue was associated with poor knowledge about symptoms of post-stroke fatigue. Monitoring of fatigue in stroke survivors should be a higher priority for stroke clinicians who play an important role in providing education and interventions to support stroke survivors in the management of fatigue post-stroke. Analysis 6 (qualitative analysis) highlighted the persisting impact of UI/PSUI on stroke survivors’ experience. The experience of UI/PSUI resulted in role loss and reduced HRQoL. Allied health professionals play an essential role in promoting confidence in continence management among stroke survivors’ and promote ongoing participation in valued life roles. There is a need for the management of UI/PSUI to be prioritised across acute, rehabilitation and community setting post stroke. Improved management of UI/PSUI that focusses on continence promotion may assist to minimise the impact of PSUI and improve rehabilitation outcomes. Analysis 7 (qualitative analysis) involved follow –up of participant beyond 12 months following stroke onset. Participants reported altered function, fatigue, distress, reduced community participation and social isolation suggesting the experience of altered HRQoL. Results highlight the importance of social support and community access in managing the emotional wellbeing of stroke survivors. Pursuing increased service access, community participation and ensuring good social support, for stroke survivors offers a practical strategy for clinicians. Conclusion: This use of mixed methodology contributes to a greater understanding of psychological morbidity in the first year after stroke. Quantitative processes identified a high frequency of anxiety and depression, highlighting the need for early detection and the initiation of effective treatment at any stage post-stroke. Qualitative processes identified distinct trajectories of psychological morbidity which may facilitate the development of interventions that promote better mental health. Further emergent qualitative themes identified that ongoing HRQOL was significantly impacted by impaired driving ability, the experience of fatigue, UI and access to ongoing service. The course of PSD and anxiety is not easily predicted, but clinical implications of this study are: a need for long-term psychological monitoring of mood post-stroke, ongoing rehabilitation that addresses stroke survivors’ disability, community participation, and improved social support. Stroke survivors’ HRQoL can potentially be maintained, or improved, using interventions aimed at reducing disability and increasing social support and community participation. Overall monitoring of stroke survivors’, including the provision so psychological interventions require implementation over a longer duration than current outpatient services, which, in Australia, are typically provided in the first few months after stroke.
- Subject
- stroke; depression; anxiety; community
- Identifier
- http://hdl.handle.net/1959.13/1042641
- Identifier
- uon:14092
- Rights
- Copyright 2014 Jennifer H. White
- Language
- eng
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