Nan Greenwood

Informal carers of stroke survivors–factors influencing carers: A systematic review of quantitative studies

Purpose. Despite increasing evidence of adverse effects on informal carers of caring for stroke survivors, little is known about the characteristics of carers and survivors that influence carer outcomes. The purpose of this review is to summarize factors influencing outcomes in carers of stroke survivors. Methods. A systematic review of studies identified from English language medicine, nursing and psychology databases from 1996 – 2006 was carried out. Results. Thirty-nine studies were identified. Studies from Europe and the USA investigating negative carer outcomes dominated. Carer psychological characteristics and survivor disability were shown to influence carer outcomes. However, the diversity of carers and outcomes investigated and differences in study timing post-stroke make generalizations difficult. Conclusions. Despite improvements in study design over the last two decades, atheoretical studies employing overlapping concepts and poorly defined participants still dominate. Future studies should have theoretical underpinning and should acknowledge the diversity of carers, survivors and their situations. In addition, future emphasis on positive carer outcomes may improve understanding of protective carer factors.

Positive experiences of caregiving in stroke: a systematic review.

Objective: To identify positive experiences of caregivers, who are unpaid carers not statutory, looking after stroke survivors by systematically reviewing published quantitative and qualitative studies. Data sources: Databases were searched from 1999 to 2009 through Medline, Cumulative Index to Nursing and Allied Health Literature (CINAHL), British Nursing Index (BNI), Allied and Complimentary Medicine Database (AHMED), PsychINFO, EMBASE and Social Care Online. Reference tracking of selected papers was carried out and references of recent reviews related to stroke caregiving were also scrutinised. Review methods: The relevance of studies was ascertained by the two authors from abstracts and inclusion and exclusion criteria were then applied. Where there were differences of opinion, full copies were read and consensus achieved by discussion. Results: Three hundred and twenty-three studies were found and nine selected. Exploratory and cross-sectional studies prevailed. A range of positive experiences confirmed the findings of previous studies in both stroke and other long-term illness; care recipients progress was the most common source, other aspects included strengthened relationships, feeling appreciated, increased self-esteem. Positive experiences were associated with coping strategies. Changes in positive experiences over time were noted and differences too, for example, between new and experienced caregivers. Conceptual and methodological issues remain. Conclusions: Caregivers were able to identify positive experiences of caregiving providing a more balanced view of their role. Helping caregivers to identify their own positive experiences will encourage them to manage their situation. Longitudinal research is needed to track changes and positive influences on caregiving. Implications for Rehabilitation There is some evidence that caregivers are able to identify what they value providing a more positive and balanced view of caregiving experiences other than just negative aspects. Positive aspects of coping are associated with positive experiences. Offering training to caregivers of a cognitive and behavioural nature, which includes a focus on positive experiences, may be beneficial and needs further consideration. The diversity of caregivers’ experiences – both positive and negative – should be taken into account by clinicians when supporting them.

Understanding the Hawthorne effect.

Researchers investigated the effectiveness of patient controlled analgesia for patients presenting to emergency departments with pain from traumatic injuries. A randomised controlled trial with a parallel groups study design was used. The control treatment was usual care, with analgesia titrated by nurses according to hospital guidelines. The participants were patients aged 18-75 years presenting to the emergency department who required intravenous opioid analgesia for the treatment of moderate to severe pain resulting from traumatic injuries, and who were expected to be admitted to hospital for at least 12 hours. In total, 200 adults were recruited and randomised to the intervention (patient controlled analgesia; n=99) and control (routine care; n=101) treatment groups.1 The primary outcome was total pain experienced over the 12 hour study period, recorded using a visual analogue scale. Secondary outcomes included total amount of morphine used. The mean total pain experienced by the intervention group was lower than that experienced by the control group, although the difference was not significant. Participants in the intervention group used significantly more morphine than was administered in the usual care group. It was concluded that patient controlled analgesia provided a reduction in pain, albeit not significant, compared with routine care for emergency department patients with traumatic injuries. The researchers commented that the results of the trial may have been influenced by the Hawthorne effect. Which of the following statements, if any, are true?

An exploratory study of anxiety in carers of stroke survivors.

AIMS AND OBJECTIVES To investigate anxiety in informal carers of stroke survivors in the first three months after discharge. BACKGROUND Informal carers, also called caregivers, play a vital role in supporting stroke survivors. However, caring for stroke survivors can have adverse consequences amongst carers such as burden, stress and reduced quality of life. Emotional distress is also commonly reported but anxiety has received less attention than depression. DESIGN Prospective, longitudinal, descriptive study. METHOD Forty-five carers completed the Hospital Anxiety and Depression Scale on two occasions - within one month and at three months after discharge from stroke and rehabilitation units. RESULTS Carers were more likely to have scores indicating anxiety than depression. In the first month, half the carers (51·1%) scored in the cut-off for anxiety and a third were in the cut-off for depression (31·1%). At three months, the picture was very similar with nearly identical proportions in the anxious and depressed categories (48·9% and 28·9%, respectively). Changes in numbers of cases of anxiety and depression and in mean anxiety scores were non-significant but there was a significant decrease in depression scores (p=0·048). Fourteen carers (31·1%) at one month and eleven (24·4%) at three months fell into both anxious and depressed categories. CONCLUSIONS Anxiety is a relatively neglected emotional outcome in stroke carers. Our study suggests anxiety is an important issue very early in caring whilst other research suggests it remains prevalent for many months. Given the significant role carers play in rehabilitation of stroke survivors, greater recognition of their emotional state is required. Further, longitudinal research with larger sample sizes from a range of geographical areas and improved understanding of factors associated with anxiety is needed. RELEVANCE TO CLINICAL PRACTICE Nurses working in the community are ideally placed to identify and support carers suffering from anxiety.

Measures of the therapeutic relationship in severe psychotic illness: a comparison of two scales.

Background: A durable therapeutic relationship is central to mental health practice. The Working Alliance Inventory (WAI) and the Helping Alliance Questionnaire (HAQ) are established instruments for measuring such a relationship. Aims: The project aimed to test the correlation between the two scales for patients with severe psychotic illness treated in an Assertive Community Treatment (ACT) team. Methods: Ninety-one patients of an ACT team and their key-workers were recruited to complete the measures. Results: Seventy-one patients (78%) completed the scales, and key-workers completed scales for every eligible patient. Both groups rated the relationship positively. There was a strong and significant correlation between the patient version of the WAI and the HAQ. There were significant but much weaker correlations between the patient-rated WAI and HAQ and the key-worker WAI. Conclusion: The patient version of the WAI and the HAQ seem to measure the patients view of the relationship equivalently. The HAQ is simpler and easier to administer than the WAI.

Conservative interventions for incontinence in people with dementia or cognitive impairment, living at home: a systematic review

BackgroundDementia is a distressing and disabling illness with worldwide estimates of increased numbers of people with the condition. Two thirds of people with dementia live at home and policies in many countries seek to support more people for longer in this setting. Incontinence both contributes to carer burden and is also a significant factor in the decision to move into care homes. A review was conducted for evidence of effectiveness for conservative interventions, which are non-pharmacological and non-surgical interventions, for the prevention or management of incontinence in community dwelling people with dementia.MethodFourteen electronic databases were searched, including MEDLINE, EMBASE and CINAHL (from inception to 2012). Assessments of risk of bias were made. Meta-analysis was inappropriate due to the heterogeneity of the interventions and outcome measurements. A narrative analysis was undertaken.ResultsFrom 427 identified abstracts, 56 studies were examined but only three met the inclusion criteria, all more than a decade old. All three focused on urinary incontinence. Two studies were exploratory or pilot studies. All had a control arm. The interventions were of advice for the carer to implement. Two included toileting education of prompted voiding or an individualised toileting schedule. There was insufficient evidence to support or rule out effectiveness of any of these interventions. Some interventions were unacceptable for some carers. None specifically reported the perspective of the person with dementia.ConclusionsThere was insufficient evidence from any studies to recommend any strategies. There remains an urgent need for both research and also clinical guidance for health professionals tailored to community settings where the majority of people with dementia live.

Perceptions of speech and language therapy amongst UK school and college students: implications for recruitment

BACKGROUND Communication disorders affect both sexes and people from all ethnic groups, but members of minority ethnic groups and males in the UK are underrepresented in the speech and language therapy profession. Research in the area of recruitment is limited, but a possible explanation is poor awareness and understanding of speech and language therapy as a profession. AIMS To investigate factors influencing attitudes to a career in speech and language therapy amongst UK school and college students focusing on the similarities and differences between males and females, and between minority ethnic and white students. METHODS & PROCEDURES A total of 651 male and female school and college students from a range of ethnic groups and all close to selecting degree courses completed a questionnaire designed to examine the attitudes and awareness of speech and language therapy. Eleven semi-structured follow-up interviews were conducted to help understand the questionnaire findings. Quantitative and qualitative analyses examined differences in attitudes and the awareness of speech and language therapy amongst these groups. OUTCOMES & RESULTS Overall, one-third of participants said they knew nothing about speech and language therapy, and males were significantly less familiar with it. Less than half the participants were aware that speech and language therapy is a degree course, and minority ethnic participants were significantly less likely to know this. Compared with males, females were almost five times as likely to say they would consider a career in speech and language therapy. Participants with relatives in health-related jobs were significantly more likely to consider speech and language therapy than those without such relatives. Compared with white participants, minority ethnic participants said they placed greater importance on studying for a degree, a profession and a scientific career, and were more influenced by a careers prestige and a high salary. CONCLUSIONS In order to increase the ethnic and gender diversity of speech and language therapists, the profile of the profession needs to be raised with increased awareness of the degree level courses, the scientific, evidence-based nature of the work, and current salary scales.

The impact of volunteer mentoring schemes on carers of people with dementia and volunteer mentors: a systematic review.

This systematic review aims to examine the differences and similarities between the various types of volunteer mentoring (befriending, mentoring and peer support) and to identify the benefits for carers and volunteers. Literature searching was performed using 8 electronic databases, gray literature, and reference list searching of relevant systematic reviews. Searches were carried out in January 2013. Four studies fitted the inclusion criteria, with 3 investigating peer support and 1 befriending for carers. Quantitative findings highlighted a weak but statistically significant (P =.04) reduction in depression after 6 months of befriending. Qualitative findings highlighted the value carers placed on the volunteer mentors’ experiential similarity. Matching was not essential for the development of successful volunteer mentoring relationships. In conclusion, the lack of need for matching and the importance of experiential similarity deserve further investigation. However, this review highlights a lack of demonstrated efficacy of volunteer mentoring for carers of people with dementia.

Respite: carers' experiences and perceptions of respite at home

BackgroundInformal carers play an important role in supporting people with long-term conditions living at home. However, the caring role is known to have adverse effects on carers such as poorer emotional health and social isolation. A variety of types of respite may be offered to carers but little is known about the benefits of respite, carers’ experiences with it, or their perceptions of care workers. This study therefore investigated these experiences and perceptions.MethodRecorded, semi-structured interviews were undertaken with twelve carers receiving weekly four-hourly respite. Carers were either caring for a person over sixty or were over sixty themselves. Interviews were analysed thematically.Results and DiscussionRespite sometimes alleviated carers’ constant sense of responsibility for their cared for. Trust, whether in the service provider or individual care workers, was essential. Carers lacking this trust tended to perceive respite as less beneficial. Low expectations were common with carers often unwilling to find fault. Care workers were frequently seen as very kind with some carers valuing their company. Care workers who were flexible, communicated well and responded to the cared for’s needs were valued. Stimulation of the cared for during respite was very important to most carers but the perceived benefits for carers were often very individual. Many carers used respite to catch up with routine, domestic tasks, rarely using it to socialise.ConclusionsFor many carers, respite was a way of maintaining normality in often difficult, restricted lives. Respite allowed continuation of what most people take for granted. Carers frequently viewed respite as intended to improve their cared for’s quality of life, rather than their own. This centrality of the cared for means that carers can only really benefit from respite if the cared for is happy and also seen to benefit. Future research should investigate the perspectives of carers and their cared for, focussing on different demographic groups by features such as age, gender, ethnicity and diagnostic groups. However, without greater clarity about what respite is intended to achieve, clear evidence of a positive impact of this intervention may remain difficult to identify.

The influence of ethnic group composition on focus group discussions.

BackgroundFocus groups are commonly used to explore participants’ experiences in health and social care research. Although it is suggested that having demographically homogenous groups may help put participants at ease, the evidence is sparse.The aims of the paper are to: explore the impact of relative ethnic homogeneity and heterogeneity of focus group participants on the group discussions; improve understanding of homogeneity and heterogeneity in focus groups; suggest ways to operationalise concepts such as being ‘more comfortable’ with other focus group participants.MethodDigitally recorded focus groups were undertaken with family carers of stroke survivors and were later transcribed and analysed using framework analysis. Groups were designated as more or less ethnically homogenous. More homogenous groups included, for example, only White British or Asian Indian participants whilst more heterogeneous groups comprised a mixture of, for example, Asian, White British and Black Caribbean participants.ResultsForty-one carers participated in seven focus groups. Analysis revealed differences in discussions around ethnicity between the more or less ethnically homogenous groups. For example, participants in more ethnically homogenous focus groups were more likely to say ethnicity might influence perceptions of social care services. On the other hand, more heterogeneous groups emphasised similarity in carers’ experiences, irrespective of ethnicity. Participants in the more homogenous groups were also more likely to make potentially controversial comments relating to ethnic differences. Additionally they appeared to be more at ease with each other discussing the topic. For example, they spontaneously mentioned ethnic differences earlier in these groups.In contrast, analysis of topics not specifically related to ethnicity, such as the difficult experiences of being a carer, produced no discernible patterns when comparing more and less homogenous focus groups.ConclusionConsiderations around focus group participant demographic homogeneity and heterogeneity are complex and these terms may be most usefully applied only in relative terms.Data derived from more homogenous groups complement data from more heterogeneous groups providing different perspectives. Depending on the focus of the discussion, having characteristics in common, such as being a carer can override other differences.