Befriending carers of people with dementia: randomised controlled trial

Objective To evaluate the effectiveness of a voluntary sector based befriending scheme in improving psychological wellbeing and quality of life for family carers of people with dementia. Design Single blind randomised controlled trial. Setting Community settings in East Anglia and London. Participants 236 family carers of people with primary progressive dementia. Intervention Contact with a befriender facilitator and offer of match with a trained lay volunteer befriender compared with no befriender facilitator contact; all participants continued to receive “usual care.” Main outcome measures Carers’ mood (hospital anxiety and depression scale—depression) and health related quality of life (EuroQoL) at 15 months post-randomisation. Results The intention to treat analysis showed no benefit for the intervention “access to a befriender facilitator” on the primary outcome measure or on any of the secondary outcome measures. Conclusions In common with many carers’ services, befriending schemes are not taken up by all carers, and providing access to a befriending scheme is not effective in improving wellbeing.

Continuity of care for carers of people with severe mental illness: results of a longitudinal study

Introduction: Continuity of care has been demonstrated to be important for service users and carer groups have voiced major concerns over disruptions of care. We aimed to assess the experienced continuity of care in carers of patients with both psychotic and non-psychotic disorders and explore its association with carer characteristics and psychological well-being. Methods: Friends and relatives caring for two groups of service users in the care of community mental health teams (CMHTs), 69 with psychotic and 38 with non-psychotic disorders, were assessed annually at three and two time points, respectively. CONTINUES, a measure specifically designed to assess continuity of care for carers themselves, was utilized along with assessments of psychological well-being and caregiving. Results: One hundred and seven carers participated. They reported moderately low continuity of care. Only 22 had had a carer’s assessment and just under a third recorded psychological distress on the GHQ. For those caring for people with psychotic disorders, reported continuity was higher if the carer was male, employed, lived with the user and had had a carer’s assessment; for those caring for people with non-psychotic disorders, it was higher if the carer was from the service user’s immediate family, lived with them and had had a carer’s assessment. Conclusion: The vast majority of the carers had not had a carer’s assessment provided by the CMHT despite this being a clear national priority and being an intervention with obvious potential to increase carers’ reported low levels of continuity of care. Improving continuity of contact with carers may have an important part to play in the overall improvement of care in this patient group and deserves greater attention.

Could in-home sensors surpass human observation of people with Parkinson’s at high risk of falling? An ethnographic study

Self-report underpins our understanding of falls among people with Parkinson’s (PwP) as they largely happen unwitnessed at home. In this qualitative study, we used an ethnographic approach to investigate which in-home sensors, in which locations, could gather useful data about fall risk. Over six weeks, we observed five independently mobile PwP at high risk of falling, at home. We made field notes about falls (prior events and concerns) and recorded movement with video, Kinect, and wearable sensors. The three women and two men (aged 71 to 79 years) having moderate or severe Parkinson’s were dependent on others and highly sedentary. We most commonly noted balance protection, loss, and restoration during chair transfers, walks across open spaces and through gaps, turns, steps up and down, and tasks in standing (all evident walking between chair and stairs, e.g.). Our unobtrusive sensors were acceptable to participants: they could detect instability during everyday activity at home and potentially guide intervention. Monitoring the route between chair and stairs is likely to give information without invading the privacy of people at high risk of falling, with very limited mobility, who spend most of the day in their sitting rooms.

Changes over time in sexual and relationship functioning of people with multiple sclerosis

Relationship and sexual satisfaction among people with multiple sclerosis (MS) has received little research attention. This article reports on a longitudinal investigation of the impact of coping style and illness-related variables among people with MS and the general population on sexual and relationship functioning. Both men (n = 120) and women (n= 201) with MS and men (n = 79) and women (n = 160) from the general population participated in the study at two points in time, 6 months apart. People with MS experienced lower levels of sexual activity, sexual satisfaction, and relationship satisfaction and higher levels of sexual dysfunction. Generally speaking, the time 1 levels of the health and coping variables explained little of the variance in the time 2 sexual and relationship variables. However, sexual activity at time 1 contributed significant unique variance to relationship satisfaction at time 2 for MS men, and coping strategies at time I contributed to relationship satisfaction among general population women at time 2. Furthermore, for those respondents who had been diagnosed with MS for less than 7 years, levels of sexual activity at time 2 were predicted by levels of sexual and relationship satisfaction, as well as levels of sexual activity at time 1. These results suggest that strategies used to cope with illness may not play a major role in sexual and relationship satisfaction. However, an examination of these strategies over a longer time frame is needed.

Economic deprivation and its effects on subjective wellbeing in families of people with multiple sclerosis

Background: There has been limited research on the role of financial strain on the adjustment of people with multiple sclerosis.

Aims: This study examined the financial costs of MS and the impact of financial strain on the quality of life and adjustment of people with MS and their families.

Methods: Interviews were conducted with 16 health professionals, 26 people with MS and 11 family members of people who have MS.

Results: Economic deprivation impacted on the subjective well being of many families living with MS. Concerns included adjustment to a lower income if the person with MS reduced or ceased work, and meeting the costs of home alterations, mobility equipment, and special transport. The additional cost of living with MS is a stress factor, especially for people dependent on disability support pensions.

Conclusions: It is anticipated that the findings from this study will raise the awareness of health professionals and politicians regarding the potential impact of financial stress on people with MS and their families.

Accessible information for people with complex communication needs

Information can be empowering if it is accessible. While a number of known information access barriers have been reported for the broader group of people with disabilities, specific information issues for people with complex communication needs have not been previously reported. In this consumer-focused study, the accessibility of information design and dissemination practices were discussed by 17 people with complex communication needs; by eight parents, advocates, therapists, and agency representatives in focus groups; and by seven individuals in individual interviews. Participants explored issues and made recommendations for content, including language, visual and audio supports; print accessibility; physical access; and human support for information access. Consumer-generated accessibility guidelines were an outcome of this study.

Emerging trends in the use of drugs to manage the challenging behaviour of people with intellectual disability

Background Concerns about the pharmacological management of the behaviour of individuals with intellectual disability have resulted in the development of legislative and procedural controls.
Method This Australian study provided a comparison of 873 reported cases where drugs were administered to manage behaviour in March 2000, with 762 cases reported in March 1993. Drug use in individuals who remained medicated across time (n = 316: recurrent sample) was also compared with those who were reported only in 1993 (n = 329: limited sample).
Results A small decrease in the proportion of individuals who were reported to have received medication was evident over time (from 5% to 4.5% of total population). However, this was accompanied by an increase in drug diversity and interclass polypharmacy. An increase in antidepressant use was evident (from 7.4% to 13.8% of reported drugs), and there was a trend towards greater reporting of medication for acute behavioural problems and medication use with children. Greater use of antipsychotic drugs was evident in individuals who remained medicated across time compared with those who did not.
Conclusions The findings suggest the need for continuous research into practice. The fact that many individuals receive medication over long periods makes it incumbent on service providers to engage in regular, comprehensive and individualized review and evaluation of medication regimes.

Challenging behaviour profiles of people with acquired brain injury living in community settings

Primary objective: To determine the type and severity of challenging behaviours among a cohort of brain-injured persons referred to a community-based behaviour management service; and to determine whether different behaviour profiles were associated with aetiology of brain injury.
Methods and procedures: A sample of clients (n= 190) referred to the ABI Behaviour Consultancy for assessment and treatment of challenging behaviours was evaluated using the Overt Behaviour Scale (OBS) and other measures of disability and support needs.
Main outcomes and results: The most common challenging behaviour categories were, in order of frequency: verbal aggression, inappropriate social behaviours and lack of initiation. Clients typically exhibited four categories of challenging behaviour and multiple kinds of the behaviours represented by each category. There was some evidence of differences in occurrence of specific behaviours associated with aetiology of brain injury, particularly for hypoxia and alcohol-related brain injury.
Conclusions: A systematic assessment of challenging behaviours in community settings has revealed the profiles of broad behavioural disturbance that can occur following ABI. Assessing the breadth of disturbance is important in understanding a client's presentation and thus planning appropriate behaviour management interventions.

To do or not to do (exercise) : physical activity in the lives of people with cerebral palsy

We examined the lives of adults with cerebral palsy who had minimal involvement in physical activity (Judy, aged 60; Alana, aged 29), who were involved in physical activity (Amy, aged 25; Ben, aged, 30), or who had minimal involvement in physical activity and who then participated in physical activity (David, aged 27; Tim, aged, 24). After receiving ethical approval, a life-history research approach (Denzin, 1989: Interpretive biography. Newbury Park, CA: Sage) was used, with the participants’ stories being interpreted using primarily psychodynamic theory (Freud, Erikson, Adler, Basch) to gain insight into their meaning and experiences of physical activity.

Judy and Alana had similar childhood experiences, which included: performing difficult, and sometimes painful, physiotherapy; wearing callipers to assist their walking; lacking competence at physical activity; and being socially isolated from their classmates. These aspects of their life histories seemed to contribute to their subsequent avoidance of physical activity and early onset of functional decline.

Amy and Ben had negative experiences with physical activity as children (similar to Judy and Alana), but were involved in, and valued, physical activity as adults. Physical activity was a means of displaying competence, delaying further functional loss, and becoming socially connected.

David and Tim lost the ability to walk in early adolescence. The minimal physical activity in which they engaged during their adult lives was directed towards trying to walk again. Walking seemed to be intimately connected with psychosocial growth. David’s weight-training programme seemed to provide him with another avenue for self-improvement towards his goal of attracting a life partner. Tim’s warm-water aerobic programme provided him with an opportunity to develop competence at swimming and at walking, and to enhance his self-esteem for these activities.

Involvement in physical activity may be important for people with cerebral palsy in their endeavours to successfully face the various psychosocial challenges throughout life. Implications of this research include: parents and teachers of children with cerebral palsy should provide support for their involvement in physical activity; physiotherapists should try to reduce the pain and increase the perceived relevancy of the treatments they deliver to young people with cerebral palsy; and psychologists should be aware of some of the difficulties people with cerebral palsy face and how they may manifest in adults with the condition.

Best practice in a resource vacuum : responding to the accommodation needs of people with high, complex or changing support needs

This paper aims to identify current practice responses to the housing and support needs of people with high, complex or changing support needs. Case studies of current housing dilemmas and responses were provided by Annecto and Scope (Vic), and included data about the responses of other providers known to these agencies. The paper will first present case study data in three categories of accommodation: living independently (ie. living alone in self-rented or self-owned housing with or without formal support); living without a home (ie. living in non permanent or non secure housing); and living in the parental home and planning for change. The case studies are followed by a discussion of the key response strategies evident in each, and an analysis of significant ‘lessons’ for policy.

Subjective quality of life of people with MS and their partners

The findings of this thesis supported a model proposed to explain the influence of psychological factors on subjective quality of life. In comparison with their partners, and with a control group, people with MS reported a lowered subjective quality of life and self-esteem, an increased need for social support, and maladaptive use of control. Recommendations for interventions were made based on these findings.