'We are still here, we are survivors': patients' experiences of attending a multidisciplinary group-based support programme following subarachnoid haemorrhage.

PURPOSE: People who survive a subarachnoid haemorrhage (SAH) often face enduring health challenges including physical disability, fatigue, cognitive impairments, psychological difficulties, and reduced quality of life. While group interventions have shown positive results in addressing similar issues in chronic conditions, the evidence involving SAH specifically is still sparse. This service evaluation aimed to explore SAH survivors' experiences of attending a multidisciplinary group-based support programme tailored to address unmet needs identified in previous literature, with the ultimate aim to refine future iterations of the programme and improve quality of care post-SAH. MATERIALS AND METHODS: Semi-structured interviews were carried out with 12 individuals who attended the programme. The resulting data were analysed thematically. RESULTS: Four overarching themes emerged from the analysis: (1) Barriers to accessing support after a SAH, (2) Factors acting as enablers of recovery, (3) Sharing lived experience to support one another, (4) Feeling connected while navigating a group format. CONCLUSIONS: Lack of communication, fear, loneliness, and cognitive impairments can act as barriers to engagement with support, while acceptance and adjustment, holistic multidisciplinary input, and psychological support may represent successful enablers of recovery. Implications for future iterations of the programme as well as clinical rehabilitation and service development are discussed.

A multidisciplinary group-based support programme may help rehabilitation following a subarachnoid haemorrhage (SAH).Factors such as lack of communication, fear, loneliness, and cognitive impairments may act as barriers to engagement, while acceptance and adjustment, holistic multidisciplinary team input, and psychological support may enable recovery.Services may wish to monitor the effectiveness and frequency of their communication while making sure a clear pathway of support and established referral routes are in place when SAH patients are discharged from hospital.Providing participants with written materials to use during each session as well as allowing for more time to connect with one another other may help with cognitive difficulties during group sessions.

A pilot and feasibility study of the effectiveness of care mapping on person-centred care in neurorehabilitation settings.

Dementia care mapping for neurorehabilitation (DCM-NR) is a tool designed to increase person-centred care (PCC) in neurorehabilitation settings. This paper reports pilot and feasibility testing of a cluster-randomized controlled trial assessing the effectiveness of DCM-NR at increasing PCC. Forty-one staff members, from four neurorehabilitation wards, were cluster-randomized to receive DCM-NR (experimental group) or care as usual (control). Measures of PCC, attitudes to people with brain injury, and PCC self-efficacy were taken at baseline and follow-up. The experimental group were also interviewed about their experiences of the trial. Twenty-nine participants completed the study. Participants generally found the intervention and trial to be acceptable. PCC was significantly higher in the experimental than the control group at follow-up, despite levels of exposure to the intervention being low. PCC self-efficacy increased in the control group, but not in the experimental group, perhaps reflecting an initial reduction in perceived competence following feedback. Neither group showed a change in attitudes to people with brain injury. The findings suggest that this cluster-randomized trial design is acceptable; that DCM-NR shows promise as a tool for increasing PCC; and highlight modifications to the protocol that could increase the success and theoretical value of a future large-scale study.

The feasibility and validity of care mapping in the clinical neurosciences.

Dementia Care Mapping (DCM) is an observational tool and process that is widely used in dementia care in measuring and improving person-centred care (PCC). DCM was previously piloted on a neurorehabilitation ward, where it was found to be feasible and acceptable in this setting. Following this, a new modified tool and accompanying manual were developed: Care Mapping - Neurorehabilitation (DCM-NR). The current study aimed to assess the feasibility and validity of DCM-NR by piloting its use in a range of clinical neuroscience settings. A mixed-methods design was used employing both quantitative and qualitative techniques. The new DCM-NR was found to be feasible for use both in terms of the suitability of its coding system and the implementation process. DCM-NR was shown to have a moderate level of concurrent validity with participants' self-report of PCC. Participants' subjective reports on their experiences of care provided validation for the areas of psychological need observed in DCM-NR. The results of this study indicate that DCM-NR is feasible and valid for use in a range of clinical neuroscience settings. Further longitudinal research is required to evaluate the impact of DCM-NR on PCC practices over time.

Care mapping in clinical neuroscience settings: Cognitive impairment and dependency.

Person-centred care can improve the well-being of patients and is therefore a key driver in healthcare developments in the UK. The current study aims to investigate the complex relationship between cognitive impairment, dependency and well-being in people with a wide range of acquired brain and spinal injuries. Sixty-five participants, with varied acquired brain and spinal injuries, were selected by convenience sampling from six inpatient clinical neuroscience settings. Participants were observed using Dementia Care Mapping - Neurorehabilitation (DCM-NR) and categorised based on severity of cognitive impairment. A significant difference in the behaviours participants engaged in, their well-being and dependency was found between the severe cognitive impairment group and the mild, moderate or no cognitive impairment groups. Dependency and cognitive impairment accounted for 23.9% of the variance in well-ill-being scores and 17.2% of the variance in potential for positive engagement. The current study highlights the impact of severe cognitive impairment and dependency on the behaviours patients engaged in and their well-being. It also affirms the utility of DCM-NR in providing insights into patient experience. Consideration is given to developing DCM-NR as a process that may improve person-centred care in neuroscience settings.

Validity of dementia care mapping on a neuro-rehabilitation ward: Q-methodology with staff and patients.

BACKGROUND: Measuring the quality of care for people using neuro-rehabilitation services is a complex area requiring reliable methods that account for variable communication abilities/cognitive functioning. Dementia Care Mapping (DCM) is an observational method widely used in dementia care to improve person-centred care, which may be usefully applied to neuro-rehabilitation settings. Evaluation is vital to determine the tool's acceptability in this setting. PURPOSE: To explore the views of staff/patients regarding whether the use of DCM is acceptable in a neuro-rehabilitation setting. METHOD: DCM was conducted on an acute neuro-rehabilitation ward. Q-methodology, a technique for extracting subjective opinions, was used with 23 staff and 10 patients on the ward to evaluate the acceptability of DCM. RESULTS: Factor analysis was performed separately for staff and patient Q-sorts. Each found a "consensus" factor where all participants indicated positive acceptability for the use of DCM. Further exploratory factors indicated that some staff/patients had additional views/concerns that were not captured by the first consensus factor. CONCLUSIONS: The results from this preliminary study are promising and indicate that DCM is potentially an acceptable tool to use in acute neuro-rehabilitation. Further research is needed to explore the acceptability of this tool more widely across neuro-rehabilitation settings. IMPLICATIONS FOR REHABILITATION: Person-centred care is widely acknowledged as being important in all care settings, including neurorehabilitation. Dementia Care Mapping was deemed to be an acceptable approach for improving the quality of person-centred care on the basis of the views of staff and patients in a neurorehabilitation ward. Dementia Care Mapping, with adaptations for neurorehabilitation settings, successfully provides an acceptable framework for measuring and improving the quality of person-centred care in this setting.

Acute neurorehabilitation versus treatment as usual.

Several clinical and government reviews have recommended specialised rehabilitation services for those recovering from neurological insult or neurosurgical intervention. Despite this, provision of 'rapid access'/acute neurorehabilitation units is extremely limited in the UK. In some areas, millions of people have no access to such facilities. Numerous articles have indicated that delayed access to neurorehabilitation in the acute recovery stage may worsen clinical outcomes and increase length of stay for patients. However, there has been a lack of studies directly comparing clinical outcomes between matched samples of patients in acute neurorehabilitation units versus patients receiving treatment-as-usual. In a study believed to be the first of its kind, this paper: (A) Describes the rationale and evidence base for acute neurorehabilitation. (B) Provides a comparison of clinical outcome scores Functional Independence Measure/Functional Assessment Measure (FIM-FAM) and also length of stay times for both of the aforementioned groups. The results show that all outcome areas except the 'communication' domain saw clinically and statistically significant improvements in the acute neurorehabilitation group. Length of stay was significantly reduced in the acute neurorehabilitation group. The case for reviewing the provision of acute neurorehabilitation units is now even more urgent and difficult to ignore.

Cognitive and mental health difficulties following subarachnoid haemorrhage.

Subarachnoid haemorrhage frequently results in disabling psychological trauma, mental health difficulties and cognitive impairments that can persist beyond the first year of discharge. At Salford Royal Hospital NHS Foundation Trust a long-term follow up programme using both neuropsychology and specialist nurses identifies patients in need of neuropsychological intervention for ongoing problems that prevent a return to work and normal life. The result of an audit of patients seen during 2008 reveals that one in three patients requires referral. Of the patients referred who completed both the initial and final outcome measures, clinically and statistically significant improvements can be seen. The results indicate the effectiveness of joint neuropsychology and specialist nurse follow up for subarachnoid haemorrhage patients.

Erectile function, sexual desire, and psychological well-being in men with epilepsy.

OBJECTIVE: The aim of this study was to explore the effects of anxiety, depression, and self-reported quality of life (QOL) on sexual function of men with epilepsy (MWE). METHODS: Sixty-nine MWE taking one antiepileptic drug and 50 controls were recruited. All completed sexual function questionnaires, the Hospital Anxiety and Depression Scale (HADS), and the World Health Organization Brief Quality of Life Questionnaire (WHOQOL-BREF). Blood was taken to analyze testosterone and dihydroepiandrosterone sulfate levels. RESULTS: Compared with controls, MWE reported higher levels of anxiety, depression, and psychological distress; lower overall quality of life and health; and lower levels of sexual desire and erectile function. Seizure frequency did not affect any of these variables, and testosterone levels did not correlate with sexual desire or erectile function. Simple linear regression showed a significant negative correlation between sexual desire and indices of anxiety, depression, and psychological distress. Multiple linear regression using overall QOL as dependent variable showed that anxiety, depression, psychological distress, and the Psychological Well-Being subscale of the WHOQOL-BREF predicted 48% of its variability. Interestingly, sexual function and seizure status did not. CONCLUSION: MWE reported lower levels of sexual desire and were more likely to report erectile dysfunction than controls. But the most important determinant of QOL was psychological status, not seizure frequency or sexual function.

Sexual function in men with epilepsy: how important is testosterone?

OBJECTIVE: To ascertain the effects on sexual function of men with epilepsy (MWE) of testosterone levels and indices of anxiety and depression. METHODS: Sixty MWE taking one antiepileptic drug only (AED), with no comedication, were compared with 60 control men. Total testosterone (TT), free testosterone (FT), bioactive testosterone (BAT), dehydroepiandrosterone sulfate (DHEAS), androstenedione, and sex hormone-binding globulin (SHBG) were measured. Each man also completed validated questionnaires exploring sexual desire (Sexual Desire Inventory [SDI]), sexual response (Sexual Response Inventory [SRI]), erectile function (Sexual Self-Efficacy Scale [SSES]), and anxiety and depression (Hospital Anxiety and Depression Scale). RESULTS: MWE reported lower levels of sexual desire and lower erectile function compared with controls. They had significantly higher levels of anxiety, depression, and psychological distress. MWE had significantly higher SHBG levels and significantly lower DHEAS. There were no significant differences between the groups' TT, FT, or BAT levels. BAT levels were significantly lower in men taking enzyme-inducing AEDs than in those taking non-enzyme-inducing AEDs. Visual inspection of TT and BAT levels showed that the majority of MWE and controls had TT and BAT levels above the "androgen threshold" levels of 12 nmol/L TT or 3.8 nmol/L BAT considered necessary for normal sexual function. There was a significant correlation (Spearman rank and simple linear regression) between sexual function and indices of anxiety and depression. There was no significant relationship between SDI and SSES and TT, FT, or BAT (Spearman rank correlation). CONCLUSIONS: Concentrating on hormone levels alone as an explanation of sexual dysfunction in epilepsy represents an overly simplistic approach to the problem. Future studies should include measures of quality of life, anxiety, and depression.

Post-traumatic stress disorder and illness perceptions over time following myocardial infarction and subarachnoid haemorrhage.

OBJECTIVES: This study investigated post-traumatic stress disorder (PTSD) symptoms and illness perceptions in people who suffered the acute medical trauma of a myocardial infarction (MI) or a subarachnoid haemorrhage (SAH). The study tested hypotheses regarding changes in PTSD symptoms and illness perceptions over time, associations between PTSD and illness perceptions and cognitive predictors of PTSD. DESIGN AND METHOD: The study employed a longitudinal design and measured the illness perceptions and PTSD symptoms of an MI group (N=17) and a SAH group (N=27). Data were collected within 2 weeks of admission (T1), 6 weeks after admission (T2) and 3 months after admission (T3). Statistical analysis was undertaken to examine associations between illness perceptions and PTSD and to examine cognitive predictors of PTSD. RESULTS: The prevalence of PTSD within the total acute medical trauma sample was 16% at 2 weeks, 35% at 6 weeks and 16% at 3 months. Illness perception factors of identity, timeline (acute/chronic), consequences and emotional representation were strongly correlated with PTSD at all three time points. PTSD symptoms and illness perceptions were shown to have changed over time. The results also showed that several illness perception factors are significant predictors of PTSD. CONCLUSIONS: Both PTSD symptoms and illness perceptions changed significantly over time following an MI or SAH. Illness perception factors are significant predictors of PTSD.