The lived experience of chronic pain and dyskinesia in children and adolescents with cerebral palsy.

BACKGROUND: To explore the lived experience of chronic pain and dyskinesia in children and adolescents with cerebral palsy. METHODS: A convergent parallel mixed methods design was undertaken. First, a quantitative cross-sectional study of participants able to self-report their quality of life was undertaken. This study characterised pain chronicity, intensity, body locations, and quality of life. Second, semi-structured interviews were undertaken with a subset of children and adolescents experiencing chronic pain. RESULTS: Twenty-five children and adolescents took part in the cross-sectional study, 23 of whom experienced chronic pain and 13 of moderate intensity. Pain was often located in multiple bodily regions (6/21), with no trends in quality of life outcomes detected. Eight participated in semi-structured interviews, which identified three key themes including 'lives embedded with dyskinesia', 'real world challenges of chronic pain', and 'still learning strategies to manage their pain and dyskinesia'. CONCLUSIONS: A high proportion of children and adolescents with cerebral palsy and dyskinesia who were able to self-report experienced chronic pain. The physical and emotional impacts of living with chronic pain and dyskinesia existed along a spectrum, from those with lesser to greater extent of their impacts. Children and adolescents may benefit from targeted chronic pain education and management within bio-psychosocial models.

Animal-Assisted Therapy and Counseling Support for Women With Breast Cancer: An Exploration of Patient's Perceptions.

BACKGROUND: Animal-assisted therapy (AAT) interventions have been shown to assist in coping and improve patient responses to symptoms. Specifically, the presence of an animal has been found to lower anxiety and motivate participation in therapy. We aimed to explore the acceptability of and experience of AAT during individual breast cancer counseling sessions. METHODS: Patients undertaking counseling with a therapy dog present were invited to participate in the study. Patients were individually interviewed and asked to reflect on their experiences of AAT. Data generation and analysis were concurrent. Transcripts were analyzed thematically using a process of constant comparison. RESULTS: Our sample included 8 female participants, 39 to 61 years old, at an average of 3 years post-breast cancer diagnosis. The majority of patients reported a positive experience with AAT. Themes that emerged around their counseling experience included benefits in the process of initiating counseling and benefits for greater engagement and personal disclosure. CONCLUSIONS: Incorporating AAT into the delivery of counseling for breast cancer patients appears to be feasible and acceptable at a patient level. From a clinical perspective, AAT promoted increased communication with health professionals. This is of clinical importance as a means to improve participation and engagement in therapy-important elements in therapeutic outcomes. However, further evaluation of the impact of AAT on specific patient outcomes and psychological morbidity is required.

Exploring stroke survivor experience of participation in an enriched environment: a qualitative study.

BACKGROUND: Data highlight the importance of undertaking intense and frequent repetition of activities within stroke rehabilitation to maximise recovery. An enriched environment (EE) provides a medium in which these activities can be performed and enhanced recovery achieved. An EE has been shown to promote neuroplasticity in animal models of stroke, facilitating enhanced recovery of motor and cognitive function. However, the benefit of enriching the environment of stroke survivors remains unknown. AIM: To qualitatively explore stroke survivors' experience of implementation of exposure to an EE within a typical stroke rehabilitation setting, in order to identify facilitators and barriers to participation. METHODS: Semi-structured interviews with 10 stroke survivors (7 females and 3 males, mean age of 70.5 years) exposed to an EE for a 2-week period following exposure to routine rehabilitation within a stroke rehabilitation ward. An inductive thematic approach was utilised to collect and analyse data. RESULTS: Qualitative themes emerged concerning the environmental enrichment paradigm including: (1) "It got me moving" - perceived benefits of participation in an EE; (2) "You can be bored or you can be busy." - Attenuating factors influencing participation in an EE; (3) "I don't like to make the staff busier" - limitations to use of the EE. CONCLUSIONS: This study provides preliminary support for the implementation of an EE within a typical stroke rehabilitation setting from a patient perspective. Reported benefits included (1) increased motor, cognitive and sensory stimulation, (2) increased social interaction, (3) alleviation of degree of boredom and (4) increased feelings of personal control. However, participants also identified a number of barriers affecting implementation of the EE. We have previously published findings on perceptions of nursing staff working with stroke survivors in this enriched rehabilitation environment who identified that patients benefited from having better access to physical, cognitive and social activities. Together, results contribute to valuable evidence for future implementation of an EE in stroke rehabilitation settings. Implications for Rehabilitation Stroke survivor access to an enriched environment (EE): RESULTS identified that participation in both individual and communal forms of environment enrichment within the stroke rehabilitation ward resulted in increased access to activities providing increased opportunities for enhanced motor, cognitive and sensory stimulation. Increased access to and participation in activities of the environmental enrichment (individual and communal) interrupted the ongoing cycle of boredom and inactivity experienced by many participants. This study provides preliminary support for the implementation of an EE within a typical stroke rehabilitation setting from a patient perspective.

The experience of urinary incontinence in stroke survivors: a follow-up qualitative study.

BACKGROUND: No previous qualitative exploration of urinary incontinence (UI) or post-stroke urinary incontinence (PSUI) has been undertaken in an Australian population. PURPOSE: The purpose of this study is to explore the experiences of community-dwelling stroke survivors who were living with UI/PSUI and understand how context shaped those experiences. METHODS: A pragmatic approach using thematic analysis was employed for this study. FINDINGS: Four themes emerged from the data: "I've got to go": onset and daily experience of UI; "No one ever mentioned it": lack of advice and information from the health system; "You can't enjoy something if you've got to go the toilet": experience of occupational restrictions; and "It's just a matter of planning": management strategies. IMPLICATIONS: UI continued well beyond discharge and was shaped by limited advice, distress, and role loss. Occupational therapists are encouraged to engage in assessment, management, and treatment of UI, including the provision of education that promotes continence, attenuates negative experiences, and enhances community participation.

Predictors of depression and anxiety in community dwelling stroke survivors: a cohort study.

PURPOSE: Few longitudinal studies explore post-stroke patterns of psychological morbidity and factors contributing to their change over time. We aimed to explore predictors of post-stroke depression (PSD) and post-stroke anxiety over a 12-month period. METHODS: A prospective cohort study. Consecutively recruited stroke patients (n=134) participated in face-to-face interviews at baseline, 3, 6, 9, and 12 months. Primary outcome measures were depression and anxiety (measured via Hospital Anxiety and Depression Scale). Independent variables included disability (Modified Rankin Scale), Quality-of-life (Assessment Quality-of-life), social support (Multi-dimensional Scale Perceived Social Support) and community participation (Adelaide Activities Profile (AAP)). Secondary outcomes were predictors of resolution and development of PSD and anxiety. RESULTS: Anxiety (47%) was more common than depression (22%) at baseline. Anxiety (but not depression) scores improved over time. Anxiety post-stroke was positively associated with baseline PSD (p<0.0001), baseline anxiety (p<0.0001) and less disability (p=0.042). PSD was associated with baseline anxiety (p<0.0001), baseline depression (p=0.0057), low social support (p=0.0161) and low community participation (p<0.0001). The only baseline factor predicting the resolution of PSD (if depressed at baseline) was increased social support (p=0.0421). Factors that predicted the onset of depression (if not depressed at baseline) were low community participation (p=0.0015) and higher disability (p=0.0057). CONCLUSION: While more common than depression immediately post-stroke, anxiety attenuates while the burden of depression persists over 12 months. Clinical programs should assess anxiety and depression, provide treatment pathways for those identified, and address modifiable risk factors, especially social support and social engagement. Implications for Rehabilitation Psychological distress post stroke is persisting. Multi-disciplinary teams that establish goals with patients promoting social and community engagement could assist in managing psychological morbidity. A shift towards promoting longer-term monitoring and management of stroke survivors must be undertaken, and should consider the factors that support and hinder psychological morbidity.

Exploring staff experience of an "enriched environment" within stroke rehabilitation: a qualitative sub-study.

BACKGROUND: Environmental Enrichment (EE) is shown to facilitate recovery of motor and cognitive function in animal models of stroke. The efficacy of EE in the clinical setting with stroke survivors remains unknown. Successful implementation of EE in a busy rehabilitation unit requires identification of barriers and enablers which are best informed by staff feedback. AIM: To qualitatively explore the experiences of nursing staff involved in a pilot study investigating the feasibility of EE in a rehabilitation ward. METHODS: This was a qualitative study consisting of analysis of semi-structured interviews with nine nursing staff who were asked to reflect on "routine care" and their own "experience of the EE study". An inductive thematic approach was used to collect and analyse data using a process of constant comparison. RESULTS: Male and female staff with varying years of experience working in stroke rehabilitation participated in focus group and individual interviews. Three key themes were identified concerning the implementation of EE including: (i) "Nurses are so busy"--perceptions on routine work practice; (ii) "A better outlook"--perceptions of the benefit of EE; (iii) "They're just not going to participate"--perceptions of barriers to EE. Indeed, the challenges identified in this study align with practice change literature, which indicates that staff workload, routine and attitudes can influence the implementation of a new practice. DISCUSSION: Staff perceived the use of an EE in their rehabilitation unit promoted activity/participation and increased patient moral. The barriers and enablers experienced by staff in this study may be used to inform the design and conduct of future studies investigating the efficacy of EE during inpatient stroke rehabilitation after stroke. IMPLICATIONS FOR REHABILITATION: Results from animals models suggest that environmental enrichment (EE) is an important paradigm for consideration in stroke rehabilitation. It is concerning that many stroke survivors are inactive during their admission for inpatient stroke rehabilitation. Preliminary results suggest that rehabilitation nurses perceive that EE promoted patient activity/participation. Results highlight the importance of social support and participation in the ward environment and potential benefits for patient's mood levels.

'Masterstroke: a pilot group stroke prevention program for community dwelling stroke survivors'.

OBJECTIVES: To explore whether a pilot secondary stroke prevention group program for community-dwelling chronic stroke survivors assisted participants in modifying their lifestyle to reduce their risk of secondary stroke. DESIGN: A mixed methods study (quantitative and qualitative). SETTING: Community. SUBJECTS: Twenty-two community dwelling, chronic stroke survivors. INTERVENTION: The Masterstroke program incorporated a secondary prevention stroke group program over a 9-week period with two 2-h sessions weekly (1 hour for education and 1 hour for exercise). The exercise component incorporated fitness, strength, mobility and balance and education focused on secondary stroke prevention whilst also providing chronic condition self-management support. MAIN MEASURES: Timed Up and Go (TUG), Six Minute Walk Test (6MWT), Fat and Fibre Barometer, The Stroke and Aphasia Quality of Life Scale (SaQoL-39), and questionnaires for salt intake and stroke knowledge. Qualitative outcomes were participants' perceptions. Data analysis involved an inductive thematic approach with constant comparison. RESULTS: There were insufficient participants for results to reach statistical significance in all categories, however, statistically significant results where achieved with regards to knowledge, TUG, salt intake and quality of life (QoL) scores. Qualitative responses explored participants' experience of the Masterstroke program; results confirmed increases in knowledge about stroke and exercise tolerance, successfulness of a group program and lifestyle modification post stroke. CONCLUSIONS: Participation in the Masterstroke program for community dwelling stroke survivors resulted in significant improvements in knowledge, functional balance, dietary behaviours and quality of life. Qualitative interviews support the participants' implementation of lifestyle changes essential for reducing risks of secondary stroke. Results support the utilisation of this model and warrants rigorous investigation regarding long-term impacts of an education and exercise program on community dwelling stroke survivors. IMPLICATIONS FOR REHABILITATION: • A program which incorporates exercise and education in a group setting may improve health-related quality of life and functional performance for community dwelling, chronic stroke survivors. • It is feasible for a multidisciplinary team to implement a secondary stroke prevention group program for community dwelling, chronic stroke survivors.

Electronic screening and decision support for poststroke depression: an exploration of doctors' and patients' perceptions of acceptability.

OBJECTIVE: To explore clinicians' and patients' perceptions of acceptability of an electronic screening and decision support system for poststroke depression. DESIGN: A mixed-methods study involved participants from 2 convenience samples. SETTING: Outpatient stroke and rehabilitation clinics. PARTICIPANTS: Stroke patients (n=62) completed surveys. Seven clinicians working at clinics targeted by the depression screening process were interviewed using semi-structured interviews. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Patient data were analyzed from an acceptability survey. Qualitative data analysis involved an inductive thematic approach with constant comparison. RESULTS: Most patients found screening easy to complete and understand, important, and a good way of conveying information to the clinician. Most clinicians did not systematically discuss mood disturbances, with attenuating factors and barriers to identification both influencing identification. Variations in the management of mood centered on the use of pharmacotherapy and role overlap with general practitioners. The screening process assisted with identification and saved time during diagnosis and management. CONCLUSIONS: The positive perceptions of patients and clinicians identified in this study support the concept of routine screening and feedback for poststroke depression. This process has the potential to improve poststroke depression practice to meet national guidelines; however, evaluation of impact on patient outcome is required.

Trajectories of psychological distress after stroke.

PURPOSE: There has been little exploration of the distinct trajectories of psychological distress after stroke and the factors that predict recovery from distress. These trajectories may assist primary care physicians by providing insight into disease onset, progression, and resolution and may be a useful way to conceptualize and understand the pattern of psychological morbidity in stroke over time. We undertook a longitudinal qualitative study to explore poststroke psychological trajectories METHODS: The primary data collection method was semistructured interviews with community-dwelling stroke survivors in metropolitan Newcastle, New South Wales, Australia. Our sample included 23 participants (12 men, 10 women; age range 37 to 94 years) discharged from a tertiary referral hospital after a stroke; these participants subsequently participated in a total of 106 interviews over 12 months. Qualitative outcomes were participants' perceptions at baseline, 3, 6, 9, and 12 months. Thematic saturation was achieved. RESULTS: Most participants were male (54%) and had a partial anterior circulation infarction stroke subtype (57%). Four different longitudinal trajectories were identified: resilience (n = 5); ongoing crisis (n = 5), emergent mood disturbance (n = 3), and recovery from mood disturbance (n = 10). Recovery from mood disturbance was facilitated by gains in independence and self-esteem and by having an internal health locus of control. CONCLUSIONS: Stroke survivors experienced a variety of psychological trajectories. Identifying distinct trajectories of psychological morbidity may help primary care physicians develop appropriately timed interventions to promote better mental health. Interventions require implementation over a longer duration than the current outpatient services that, in Australia, are typically provided in the first few months after stroke.

Access and participation in the community: a prospective qualitative study of driving post-stroke.

PURPOSE: Loss of role as a driver significantly affects community participation; therefore, we aimed to explore the impact of driving issues post-stroke in community-dwelling stroke survivors. METHODS: A longitudinal qualitative study of community-dwelling stroke survivors, using semi-structured interviews. RESULTS: Twenty-two participants took part in 84 interviews over a 1-year period post-stroke. The majority of participants was independent and experienced few major depressive symptoms. ages ranged from 50 to 92 years. Emergent key themes included impact on quality of life, personal impacts, change to role performance and knowledge. Participants received inconsistent advice regarding return to driving. Confidence and availability determined public transport use. CONCLUSIONS: Driving advice should be standard practice prior to discharge. Allied health professionals can play an essential role in interventions addressing community participation, driver re-training and alternative transport use. Therapists have an important role in assisting stroke survivors to work through feelings of loss and in providing education concerning new skills to support this life transition.

Stroke patients' experience with the Australian health system: a qualitative study.

BACKGROUND: Consumer feedback about experiences with the health system is integral to service planning and is consistent with growing interest in patient-centred care. PURPOSE: To explore the experiences of community-dwelling stroke survivors at one, three and five years using a community-based, cross-sectional study. METHODS: The quantitative study was comprised of 90 participants post-stroke (3 cohorts, each including 30 participants). Qualitative interviews were undertaken with 12 participants (4 participants from each cohort). This paper presents findings from the qualitative component of the project. FINDINGS: The majority of participants in each cohort were independent and a high proportion required community services. Qualitative data identified varied experiences with the health system, including knowledge about stroke, communication with the health system, and influences on transition home. IMPLICATIONS: The results presented identify the need for ongoing health professional education to enhance stroke service delivery. There is a particular need to address stroke risk-factor modification and to ensure close collaboration with patients and other health professionals with regard to rehabilitation processes. Results identify experiences with health systems up to five years post-stroke. Occupational therapy can play an essential role in post-stroke education and in rehabilitation focused on adjustment to stroke.

Exploring poststroke mood changes in community-dwelling stroke survivors: a qualitative study.

OBJECTIVE: To explore the long-term experience of mood changes in community-dwelling stroke survivors at 1, 3, and 5 years after stroke. DESIGN: A qualitative study using a modified grounded theory approach. The primary data collection method was semi-structured interviewing. SETTING: Community-dwelling stroke survivors in metropolitan Newcastle, NSW, Australia. PARTICIPANTS: Twelve community-dwelling stroke survivors (6 men, 6 women; age range 43-92y; 4 participants from each cohort) discharged from a tertiary referral hospital. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Qualitative outcomes were participants' perceptions using in-depth, semi-structured interviews with participants from 3 community-based cohorts of stroke survivors at 1, 3, and 5 years poststroke. RESULTS: Four main categories of mood change were described by participants including feelings of frustration, reduced self-efficacy, dependency, and loss. Factors that modulated these mood changes included the presence or absence of insight, hope for the future, faith, and support. A modified grounded theory approach was used for data analysis using a process of constant comparison. CONCLUSIONS: Mood changes continued well beyond discharge and in some cases commenced after discharge in this sample of stroke survivors. Use of qualitative methodology extends our understanding of the extent and nature of low mood after stroke. There is a need for enhanced services to monitor and address low mood.

Community-dwelling stroke survivors: function is not the whole story with quality of life.

OBJECTIVE: To compare function and quality of life in community-dwelling stroke survivors at 1, 3, and 5 years after stroke. DESIGN: A community-based, cross-sectional study of 3 retrospective cohorts. SETTING: Community-dwelling stroke survivors in Australia. PARTICIPANTS: The 3 cohorts comprised 30 participants each at 1, 3, and 5 years poststroke discharge from a tertiary referral hospital. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Stroke severity, comorbidity, medications used, and demographic information were recorded. Poststroke function was assessed using the Modified Rankin Scale, Mini-Mental State Examination, Stroke Impact Scale, and Multidimensional Scale of Perceived Social Support. RESULTS: This cross-sectional study provides insights into trends in stroke survivors over time. A high proportion of stroke survivors use community services, even those who are independent with activities of daily living. Although there was little attrition in medication use over time except for warfarin, this was from a baseline of suboptimal compliance and adherence with stroke preventive therapies. Stroke survivors report high levels of perceived social support; however, emotional well-being was low overall. The data suggest that those who are independent at 1 year tend to remain independent, although this was an extrapolation from serial cross-sections and needs to be explored in a longitudinal study. CONCLUSIONS: Stroke survivors' function does not change significantly over time. A high proportion of survivors require community services. The development of needs-related effective long-term service delivery models is required.