Uncovering treatment burden as a key concept for stroke care: a systematic review of qualitative research

<b>Background</b> Patients with chronic disease may experience complicated management plans requiring significant personal investment. This has been termed ‘treatment burden’ and has been associated with unfavourable outcomes. The aim of this systematic review is to examine the qualitative literature on treatment burden in stroke from the patient perspective.<p></p> <b>Methods and findings</b> The search strategy centred on: stroke, treatment burden, patient experience, and qualitative methods. We searched: Scopus, CINAHL, Embase, Medline, and PsycINFO. We tracked references, footnotes, and citations. Restrictions included: English language, date of publication January 2000 until February 2013. Two reviewers independently carried out the following: paper screening, data extraction, and data analysis. Data were analysed using framework synthesis, as informed by Normalization Process Theory. Sixty-nine papers were included. Treatment burden includes: (1) making sense of stroke management and planning care, (2) interacting with others, (3) enacting management strategies, and (4) reflecting on management. Health care is fragmented, with poor communication between patient and health care providers. Patients report inadequate information provision. Inpatient care is unsatisfactory, with a perceived lack of empathy from professionals and a shortage of stimulating activities on the ward. Discharge services are poorly coordinated, and accessing health and social care in the community is difficult. The study has potential limitations because it was restricted to studies published in English only and data from low-income countries were scarce.<p></p> <b>Conclusions</b> Stroke management is extremely demanding for patients, and treatment burden is influenced by micro and macro organisation of health services. Knowledge deficits mean patients are ill equipped to organise their care and develop coping strategies, making adherence less likely. There is a need to transform the approach to care provision so that services are configured to prioritise patient needs rather than those of health care systems

Using shared goal setting to improve access and equity : a mixed methods study of the Good Goals intervention in children's occupational therapy

Peer reviewedPublisher PD

Facilitators and “deal breakers”: a mixed methods study investigating implementation of the goal setting and action planning (G-AP) framework in community rehabilitation teams

Background: High quality goal setting in stroke rehabilitation is vital, but challenging to deliver. The G-AP framework (including staff training and a stroke survivor held G-AP record) guides patient centred goal setting with stroke survivors in community rehabilitation teams. We found G-AP was acceptable, feasible to deliver and clinically useful in one team. The aim of this study was to conduct a mixed methods investigation of G-AP implementation in diverse community teams prior to a large-scale evaluation. Methods: We approached Scottish community rehabilitation teams to take part. Following training, G-AP was delivered to stroke survivors within participating teams for 6 months. We investigated staff experiences of G-AP training and its implementation using focus groups and a training questionnaire. We investigated fidelity of G-AP delivery through case note review. Focus group data were analysed using a Framework approach; identified themes were mapped into Normalisation Process Theory constructs. Questionnaire and case note data were analysed descriptively. Results: We recruited three teams comprising 55 rehabilitation staff. Almost all staff (93%, 51/55) participated in G-AP training; of those, 80% (n = 41/51) completed the training questionnaire. Training was rated as ‘good’ or ‘very good’ by almost all staff (92%, n = 37/41). G-AP was broadly implemented as intended in two teams. Implementation facilitators included - G-AP ‘made sense’; repetitive use of G-AP in practice; flexible G-AP delivery and positive staff appraisals of G-AP impact. G-AP failed to gain traction in the third team. Implementation barriers included - delays between G-AP training and implementation; limited leadership engagement; a poor ‘fit’ between G-AP and the team organisational structure and simultaneous delivery of other goal setting methods. Staff recommended (i) development of training to include implementation planning; (ii) ongoing local implementation review and tailoring, and (iii) development of electronic and aphasia friendly G-AP records. Conclusions: The interaction between G-AP and the practice setting is critical to implementation success or failure. Whilst facilitators support implementation success, barriers can collectively act as implementation “deal breakers”. Local G-AP implementation efforts should be planned, monitored and tailored. These insights can inform implementation of other complex interventions in community rehabilitation settings

Patient influence in home-based reablement for older persons: qualitative research

Abstract Background Reablement services are rehabilitation for older people living at home, being person-centered in information, mapping and the goal-setting conversation. The purpose of this study was to gain knowledge about conversation processes and patient influence in formulating the patients’ goals. There are two research questions: How do conversation theme, structure and processes appear in interactions aiming to decide goals of home-based reablement rehabilitation for the elderly? How professionals’ communication skills do influence on patients' participation in conversation about everyday life and goals of home-based reablement? Methods A qualitative field study explored eight cases of naturally occurring conversations between patients and healthcare professionals in a rehabilitation team. Patients were aged 67–90 years old. The reablement team consisted of an occupational therapist, physiotherapist, nurse and care workers. Data was collected by audio recording the conversations. Transcribed text was analyzed for conversational theme and communication patterns as they emerged within main themes. Results Patient participation differed with various professional leadership and communication in the information, mapping and goalsetting process. In the data material in its entirety, conversations consisted mainly of three parts where each part dealt with one of the three main topics. The first part was “Introduction to the program.” The main part of the talk was about mapping (“Varying patient participation when discussing everyday life”), while the last part was about goal setting (“Goals of rehabilitation”). Conclusions Home-based reablement requires communication skills to encourage user participation, and mapping of resources and needs, leading to the formulation of objectives. Professional health workers must master integrating two intentions: goal-oriented and person-centered communication that requires communication skills and leadership ability in communication, promoting patient influence and goal-setting. Quality of such conversations is complex, and requires the ability to apply integrated knowledge, skills and attitudes appropriate to communication situations

Goal Setting with ICF (International Classification of Functioning, Disability and Health) and Multidisciplinary Team Approach in Stroke Rehabilitation

Stroke-associated impairments display a wide variety of clinical signs and symptoms. Therefore, a multidisciplinary team with different experts working closely together is necessary for effective stroke rehabilitation

Spasticity and contractures at the wrist after stroke: time course of development and their association with functional recovery of the upper limb

Objective: To investigate the time course of development of spasticity and contractures at the wrist after stroke and to explore if these are associated with upper limb functional recovery. - Design: Longitudinal observational study using secondary data from the control group of a randomized controlled trial. - Setting: The Acute Stroke Unit at the University Hospital of North Staffordshire. - Subjects: Patients without useful arm function (Action Research Arm Test – ARAT) score of 0 within 6 weeks of a first stroke. - Main measures: Spasticity was measured by quantifying muscle activity during passively imposed stretches at two velocities. Contractures were measured by quantifying passive range of movement and stiffness. Upper limb functional movement was assessed using the ARAT. All assessments were conducted at baseline, and at 6, 12, 24 and 36 weeks after recruitment. - Results: Thirty patients (43% male, median age 70 (range 52–90) years, median time since stroke onset 3 (range 1–5) weeks) were included. Twenty-eight (92%) demonstrated signs of spasticity throughout the study period. Participants who recovered arm function (n = 5) showed signs of spasticity at all assessment points but did not develop contractures. Patients who did not recover useful arm function (n = 25) had signs of spasticity and changes associated with contracture formation at all time points tested. - Conclusion: In this group of patients who had no arm function within the first 6 weeks of stroke, spasticity was seen early, but did not necessarily hinder functional recovery. Contractures were more likely to develop in patients who did not recover arm function

Spasticity and contractures at the wrist after stroke: time course of development and their association with functional recovery of the upper limb

Objective: To investigate the time course of development of spasticity and contractures at the wrist after stroke and to explore if these are associated with upper limb functional recovery. \ud \ud Design: Longitudinal observational study using secondary data from the control group of a randomized controlled trial. \ud \ud Setting: The Acute Stroke Unit at the University Hospital of North Staffordshire. \ud \ud Subjects: Patients without useful arm function (Action Research Arm Test – ARAT) score of 0 within 6 weeks of a first stroke. \ud \ud Main measures: Spasticity was measured by quantifying muscle activity during passively imposed stretches at two velocities. Contractures were measured by quantifying passive range of movement and stiffness. Upper limb functional movement was assessed using the ARAT. All assessments were conducted at baseline, and at 6, 12, 24 and 36 weeks after recruitment. \ud \ud Results: Thirty patients (43% male, median age 70 (range 52–90) years, median time since stroke onset 3 (range 1–5) weeks) were included. Twenty-eight (92%) demonstrated signs of spasticity throughout the study period. Participants who recovered arm function (n = 5) showed signs of spasticity at all assessment points but did not develop contractures. Patients who did not recover useful arm function (n = 25) had signs of spasticity and changes associated with contracture formation at all time points tested. \ud \ud Conclusion: In this group of patients who had no arm function within the first 6 weeks of stroke, spasticity was seen early, but did not necessarily hinder functional recovery. Contractures were more likely to develop in patients who did not recover arm function