Carol Bugge

Stroke Patients’ Informal Caregivers: Patient, Caregiver, and Service Factors That Affect Caregiver Strain

BACKGROUND AND PURPOSE Research has revealed that caring for a stroke patient can result in caregiver strain and a myriad of other difficulties for caregivers. This study aims to identify the level of strain experienced by caregivers in the early months after stroke and to assess the relationship between caregiver strain and caregiver characteristics, patient characteristics, and service inputs. METHODS Stroke patients were identified through a random stratified sample of general practices. Patients were asked to identify their principal informal caregiver. Strain was measured with the Caregiver Strain Index, and all data were collected from caregivers at 1, 3, and 6 months after the patients stroke. Multiple regression analysis was used to examine the factors associated with caregiver strain. RESULTS Six months after stroke, 37% of caregivers were experiencing considerable strain. The amount of time a caregiver spent helping a stroke patient, the amount of time the caregiver spent with the patient, and the caregivers health were all significantly associated with the level of strain experienced. Although none of the services or patient factors tested in this study were consistently associated with strain, an indicator of stroke severity was significant at each time point. CONCLUSIONS Caregivers are experiencing strain, which has implications for research and service provision. Service providers need to identify caregivers at risk of greater strain and to help caregivers work through situations that services cannot alter. Research is needed to identify services that are effective in strain alleviation. Future research should also aim to identify the interface between patient characteristics and strain, burden, and depression and particularly to assess the caregivers perception of these relationships.

A process for Decision-making after Pilot and feasibility Trials (ADePT): development following a feasibility study of a complex intervention for pelvic organ prolapse

BackgroundCurrent Medical Research Council (MRC) guidance on complex interventions advocates pilot trials and feasibility studies as part of a phased approach to the development, testing, and evaluation of healthcare interventions. In this paper we discuss the results of a recent feasibility study and pilot trial for a randomized controlled trial (RCT) of pelvic floor muscle training for prolapse (ClinicalTrials.gov: NCT01136889). The ways in which researchers decide to respond to the results of feasibility work may have significant repercussions for both the nature and degree of tension between internal and external validity in a definitive trial.MethodsWe used methodological issues to classify and analyze the problems that arose in the feasibility study. Four centers participated with the aim of randomizing 50 women. Women were eligible if they had prolapse of any type, of stage I to IV, and had a pessary successfully fitted. Postal questionnaires were administered at baseline, 6 months, and 7 months post-randomization. After identifying problems arising within the pilot study we then sought to locate potential solutions that might minimize the trade-off between a subsequent explanatory versus pragmatic trial.ResultsThe feasibility study pointed to significant potential problems in relation to participant recruitment, features of the intervention, acceptability of the intervention to participants, and outcome measurement. Finding minimal evidence to support our decision-making regarding the transition from feasibility work to a trial, we developed a systematic process (A process for Decision-making after Pilot and feasibility Trials (ADePT)) which we subsequently used as a guide. The process sought to: 1) encourage the systematic identification and appraisal of problems and potential solutions; 2) improve the transparency of decision-making processes; and 3) reveal the tensions that exist between pragmatic and explanatory choices.ConclusionsWe have developed a process that may aid researchers in their attempt to identify the most appropriate solutions to problems identified within future pilot and feasibility RCTs. The process includes three key steps: a decision about the type of problem, the identification of all solutions (whether addressed within the intervention, trial design or clinical context), and a systematic appraisal of these solutions.

Psychometric properties of the pelvic organ prolapse symptom score

Objective  To assess the internal consistency, construct validity and sensitivity to change of a pelvic organ prolapse symptom score (POP‐SS).

What is the association between the different components of stroke rehabilitation and health outcomes

Objectives: To describe the rehabilitation input stroke patients received from health professionals during the early post stroke period and to explore possible associations between health outcomes and these rehabilitation inputs. Design: Community-based study with prospective identification of stroke patients from a random sample of 24 general practices stratified by geographical area and practice size. Setting: Ayrshire and Arran Health Board area, West of Scotland. Interventions: All physiotherapy, occupational therapy, dietetics, podiatry, speech and language therapy and community nursing inputs given to stroke patients in the course of normal treatment were recorded. Outcome measures: Barthel Index and Medical Outcomes Study Short Form-36 (SF-36). Both recorded at one, three and six months post stroke. Results: Of the 152 people providing data, more had received physiotherapy than any other rehabilitation input at all three follow-ups (81%, 47%, 39%), with occupational therapy being the next most common service (65%, 44%, 25%). Amount of rehabilitation input was significantly negatively correlated with health outcomes measured at each discrete time point: those patients with the poorest outcomes received greatest input. However, regression analysis of change in outcome scores showed that increasing amounts of rehabilitation input were significantly associated with a reduction in disability, particularly between one and three months post stroke. Conclusions: Not only have we shown that those stroke patients with poorest outcomes received most rehabilitation input, but, from analysis of the individual rehabilitation inputs, we have identified some rehabilitation inputs that significantly predict improved outcomes. This suggests that there would be merit in further investigation of these associations.

Commercial gaming devices for stroke upper limb rehabilitation: a survey of current practice

Abstract Purpose: Stroke upper limb impairment is associated with disability in activities of daily living. Gaming (Nintendo Wii) is being introduced to rehabilitation despite limited evidence regarding effectiveness. Little data exists on how gaming is implemented resulting in a lack of clinical information. We aimed to gather therapists’ opinions on gaming. Methods: A survey was posted to therapists, identified from stroke services across Scotland. A second survey was posted to non-responders. Survey data were analysed using descriptive statistics and thematic coding. Results: Surveys were sent to 127 therapists (70 stroke services) and returned by 88% (112/127). Gaming was used by 18% of therapists, 61% (68/112) stated they would use this intervention should equipment be available. The most commonly used device was Nintendo Wii (83% of therapists using gaming) for 30 min or less once or twice per week. Half of therapists (51%) reported observing at least one adverse event, such as fatigue, stiffness or pain. Gaming was reported to be enjoyable but therapists described barriers, which relate to time, space and cost. Conclusions: Gaming is used by almost a fifth of therapists. Adverse events were reported by 51% of therapists; this should be considered when recommending use and dosage. Implications for Rehabilitation Commercial gaming devices are reported to be used by 1/5th of therapists for stroke upper limb rehabilitation, 3/5ths would use gaming if available. Adverse events were reported by 51% of therapists; this should be considered when recommending use and dosage. Current use of gaming in practice may not be achieving intense and repetitive upper limb task-specific practice.

Engagement: an indicator of difference in the perceptions of antenatal care for pregnant women from diverse socioeconomic backgrounds

Background  Socioeconomically deprived women are at greater risk of adverse pregnancy outcomes. Research tends to focus on access of services. Yet access may not equate with the equity of services for women from different socioeconomic backgrounds.

Caring for continence in stroke care settings: A qualitative study of patients’ and staff perspectives on the implementation of a new continence care intervention

Objectives: Investigate the perspectives of patients and nursing staff on the implementation of an augmented continence care intervention after stroke. Design: Qualitative data were elicited during semi-structured interviews with patients (n = 15) and staff (14 nurses; nine nursing assistants) and analysed using thematic analysis. Setting: Mixed acute and rehabilitation stroke ward. Participants: Stroke patients and nursing staff that experienced an enhanced continence care intervention. Results: Four themes emerged from patients’ interviews describing: (a) challenges communicating about continence (initiating conversations and information exchange); (b) mixed perceptions of continence care; (c) ambiguity of focus between mobility and continence issues; and (d) inconsistent involvement in continence care decision making. Patients’ perceptions reflected the severity of their urinary incontinence. Staff described changes in: (i) knowledge as a consequence of specialist training; (ii) continence interventions (including the development of nurse-led initiatives to reduce the incidence of unnecessary catheterisation among patients admitted to their ward); (iii) changes in attitude towards continence from containment approaches to continence rehabilitation; and (iv) the challenges of providing continence care within a stroke care context including limitations in access to continence care equipment or products, and institutional attitudes towards continence. Conclusion: Patients (particularly those with severe urinary incontinence) described challenges communicating about and involvement in continence care decisions. In contrast, nurses described improved continence knowledge, attitudes and confidence alongside a shift from containment to rehabilitative approaches. Contextual components including care from point of hospital admission, equipment accessibility and interdisciplinary approaches were perceived as important factors to enhancing continence care.

A nurse-led interdisciplinary approach to promote self-management of type 2 diabetes: A process evaluation of post intervention experiences

RATIONALE, AIMS AND OBJECTIVES Self-management of type 2 diabetes through diet, exercise and for many medications, are vital in achieving and maintaining glycaemic control in type 2 diabetes. A number of interventions have been designed to improve self-management, but the outcomes of these are rarely explored from a qualitative angle and even fewer through a process evaluation. METHOD A process evaluation was conducted using a qualitative design with participants randomized to an intervention. Seventy-three people living with type 2 diabetes and hyperglycaemia for a minimum of 1 year, randomized to one of two interventions (n = 34 to an education intervention and n = 39 to an education and acceptance and commitment therapy intervention) completed stage one of the process evaluation, immediately following the intervention through written feedback guided by open-ended questions. A purposive sample of 27 participants completed semi-structured interviews at 3 and 6 months post intervention. Interview data were transcribed and data analysed using a thematic analysis. RESULTS The majority of participants described an increase in knowledge around diabetes self-management and an increased sense of personal responsibility. Participants also described changes in self-management activities and reflected on the challenges in instigating and maintaining change to improve diabetes management. CONCLUSION The complexities of implementing change in daily life to improve glycaemic control indicate the need for ongoing support post intervention, which may increase and maintain the effectiveness of the intervention.

ADePT (algorithm for decision-making after pilot and feasibility trials): a decision aid for progression from feasibility study to main trial

Methods A four-centre feasibility study including pilot trial aiming to randomise 50 women with prolapse of any type or stage and who had had a pessary successfully fitted. We used published methodological categories to classify and analyse the problems that arose in our feasibility study. Subsequently we sought to locate potential solutions that might minimise the trade-off between an explanatory and pragmatic main trial.

Factors affecting continuation of clean intermittent catheterisation in people with multiple sclerosis: Results of the COSMOS mixed-methods study

Background: Clean intermittent catheterisation (CIC) is often recommended for people with multiple sclerosis (MS). Objective: To determine the variables that affect continuation or discontinuation of the use of CIC. Methods: A three-part mixed-method study (prospective longitudinal cohort (n = 56), longitudinal qualitative interviews (n = 20) and retrospective survey (n = 456)) was undertaken, which identified the variables that influenced CIC continuation/discontinuation. The potential explanatory variables investigated in each study were the individual’s age, gender, social circumstances, number of urinary tract infections, bladder symptoms, presence of co-morbidity, stage of multiple sclerosis and years since diagnosis, as well as CIC teaching method and intensity. Results: For some people with MS the prospect of undertaking CIC is difficult and may take a period of time to accept before beginning the process of using CIC. Ongoing support from clinicians, support at home and a perceived improvement in symptoms such as nocturia were positive predictors of continuation. In many cases, the development of a urinary tract infection during the early stages of CIC use had a significant detrimental impact on continuation. Conclusion: Procedures for reducing the incidence of urinary tract infection during the learning period (i.e. when being taught and becoming competent) should be considered, as well as the development of a tool to aid identification of a person’s readiness to try CIC.