Catherine Gibb

Effects of hippotherapy on people with cerebral palsy from the users’ perspective: A qualitative study

Although there is now some evidence for specific effects of hippotherapy on people with cerebral palsy, these studies fail to provide a comprehensive picture of the effects of hippotherapy. This was the first qualitative study to explore the hippotherapy experience of people with cerebral palsy from a user perspective. The effects of hippotherapy and their context were of particular interest. Seventeen users aged from 4 to 63, with or without their parents, participated in focus groups or individual interviews in six centres in Britain and in Germany. The main effects of hippotherapy, as identified by users and parents, are normalisation of muscle tone, improved trunk control, improved walking ability, carryover effects of hippotherapy to activities of daily living, and increased self-efficacy, confidence, and self-esteem. This study provided unique and new insights into the context in which hippotherapy happens, as well as its effects on impairment, activity, participation, and quality of life in people with cerebral palsy. The studys findings are integrated with the existing literature on motor learning and pedagogy to try to explain the complex effects of hippotherapy as reported by users and parents. A conceptual framework that illustrates these effects and their interactions is introduced.

National survey of speech and language therapy provision for people with Parkinson's disease in the United Kingdom: therapists’ practices

BACKGROUND Communication and swallowing changes feature prominently in Parkinsons disease. People with Parkinsons disease appear under-represented in speech-language therapy clinics in the United Kingdom. The nature of the speech-language therapy services in the UK to people with Parkinsons disease has not been examined. AIMS To ascertain the number of speech-language therapists in the UK who work with people with Parkinsons disease; to establish the nature of contacts in terms of caseloads, referral stages and routes, management practices, assessments and treatments employed; and to reflect on service provision in relation to published guidelines. METHODS & PROCEDURES A questionnaire survey of speech-language therapists. OUTCOMES & RESULTS A total of 185 speech-language therapists responded. They were treating a median of three (inter-quartile range (IQR) = 1-6) people with Parkinsons disease with a further median of five (IQR = 1-10) on review. The majority of contacts were for assessment and advice given, especially in later and earlier stages of Parkinsons disease. Typically, respondents offered a median of six sessions (IQR = 6-8) of treatment, each session lasting a median of 45 min (IQR = 45-60), delivered over a median period of 42 days (IQR = 28-56). Speech-language therapists worked in a variety of settings, predominantly hospital. They received referrals principally from medical specialities, from whom the majority had support. Referrals were perceived in general to be later in Parkinsons disease progression than desired. Assessment focused primarily on impairment measures, in contrast to a belief that therapy focus on activity and participation issues. Speech-language therapists were relatively confident in treating people with Parkinsons disease, but 75% wanted more training. CONCLUSIONS & IMPLICATIONS Speech-language therapist services for people with Parkinsons disease in the UK are restricted on most dimensions. Management practices often do not match guideline suggestions. Consideration needs to be given to the training for, content of and delivery of speech-language therapy services for people with Parkinsons disease.

Risky and resilient life with dementia: review of and reflections on the literature

In this article, we report on our interpretation of past and current literature on negotiating risk and resilience in the everyday lives of people living with dementia. We undertook the literature review on which this article is based as part of an ongoing qualitative study designed to explore issues of risk and resilience from the point of view of people living with dementia in urban and rural communities. We carried out a search of international, peer-reviewed publications in 2012 with an emphasis on UK policy and practice. We also accessed UK Government documents and reports for background detail. We found that there is a personal, collective, practice and policy-based will to secure robust and positive responses to risk and to work with individual and collective notions of resilience. However, there is a competing practice narrative of vulnerability and protection, and a concern with litigation that undermines positive responses to risk. There is some recognition that for community dementia services to be responsive and proactive to the needs and wishes of their users, risk and resilience need to be considered from within complex and diverse, local perspectives and lifelong knowledge. We would add to this by emphasising that an understanding of local context is also needed to fully appreciate complex and nuanced positioning of the person living with dementia. Resources may or may not be in place, but how and why they are used (or not used), and how the person with dementia may be influenced (or not) by others and by localised contexts, may have far-reaching implications for policy and practice.

Paradoxes, locations and the need for social coherence: a qualitative study of living with a learning difficulty

Policy rhetoric over recent decades has promoted social inclusion of the more vulnerable sectors of society, such as people with learning difficulties. This study aimed to describe the experiences of people who live with learning difficulties in order to inform local service development. Thirty‐five people with a learning difficulty and/or a family member were interviewed. A model of social coherence was developed that moves beyond the self‐limiting debates about social inclusion and exclusion. It is underpinned by a sense of location for the person with a disability in relation to services and carers, family and community, dependency and risk, temporality and space, events, control and society. Key recommendations are for services to know the individual and his/her family; to be responsive to individual needs; to enhance the capacity of families and communities to support people with difficulty in learning; and to help these people to feel more valued.

Reframing risk management in dementia care through collaborative learning

Risk management is a complex aspect of practice which can lead to an emphasis on maintaining physical safety, which impacts on the well-being of people with dementia. Education for practitioners in risk management is particularly challenging because of its conceptual nature and diverse perceptions of risk between and within professional groups. The practice development research reported here formed one part of a multisite study and contributed to developing a risk assessment and management framework for use by practitioners in partnership with people with dementia and their families. Practice development research uses learning theories in the process of the research, and in so doing its intent is to not only create new knowledge but to view the research process as also a process of learning for those involved. Twenty practitioners from varying professions participated in five Collaborative Learning Groups, each of at least 2 hours duration, which were held over a 7-month period. Data analysis highlighted contradictions in the care system and in the professionals intention to practice in a person-centred way. These were expressed through the themes of: Seeking Certainty; Making Judgements; Team Working; Managing Complexity; Gathering and Using Information.

Research and dementia, caring and ethnicity – a review of the literature

Despite the need for services which are culturally appropriate there is a dearth of robust research on the impact of ethnic background on dementia and caregiving. A literature search has revealed a relative lack of published research from the UK, with more US studies available. This paper provides a review of the literature on these topics and includes a critique of ethnicity categorisation and commonly held assumptions. It explores the complexities of the concept of ethnicity and examines its significance in relation to understandings of health and illness in general, and dementia in particular. Ethnic background appears to account for differences in experiences of dementia and caregiving, but other compounding variables, including socio-economic factors and education, also need to be taken into account when considering the experiences of specific ethnic communities. The paper concludes that ethnicity is significant in regard to how people experience dementia and caregiving, but also highlights a continuing need for research which explores the impact of ethnic background in a sensitive and sophisticated manner.

Alcohol-related brain damage: Narrative storylines and risk constructions

To date, the voice and experience of people with alcohol-related brain damage has been silent in the literature. Using narrative research methodology and a focus on risk and quality of life, this paper outlines the analysis of interviews with six people with alcohol-related brain damage who were resident on a specialist care unit for the condition. Of the six participants, four were interviewed twice in line with the study protocol and separate interviews were conducted with a key worker on the unit, a social worker and a relative of one of the female participants. Analysis of the interviews revealed three dominant, narrative storylines: Five Minute Memory; Fractured Lives; and Believing in Recovery. Risk was constructed and experienced in a variety of ways under each of these narrative storylines, but each participant was particularly vulnerable to the assimilation of alcohol-related brain damage as a component and projection of self and identity. In addition, the process of ‘prompting’ emerged as a way that care staff constructed and discharged their rehabilitative function on the care unit and worked to minimise risk factors. A more co-ordinated, robust and transparent funding, policy, education and service structure for people with alcohol-related brain damage is called for.

Infant massage: developing an evidence base for health visiting practice

Abstract In common with most complementary interventions, infant massage has not received a great deal of attention from evaluative research, and what little research has been done has been quite equivocal. Its use as an intervention within Health Visiting practice has received even less attention. This modest study sought to evaluate the process and impact of one Health Visitor’s use of infant massage. Data were collected in three forms. Firstly, a postal questionnaire was distributed to those who had accessed the infant massage programme and to a ‘non-intervention’ group (94 and 60 were returned from each group, respectively). This questionnaire included the previously validated Self-Esteem Scale and the Parenting Sense of Competence Scale in addition to biographical and infant massage related questions that were designed for this study. Secondly, those parents attending the programme were invited to complete a programme evaluation questionnaire ( n =100). Thirdly, three focus group interviews were held with one group of programme participants—at the start and end of the five-week programme and three months later. This study did not demonstrate any statistically significant impact of infant massage on the selected outcome measures. However, the more qualitative data provided considerable support for the intervention, both in relation to the perceived direct benefits of infant massage and in relation to the health promotion and social benefits of attending the infant massage programme. Indeed, the need to disaggregate the intervention from the mode of delivery in order to demonstrate effectiveness, together with the diffuse effects of massage, render such a study methodologically challenging.

Survey of speech and language therapy provision for people with Parkinson’s disease in the United Kingdom: patients’ and carers’ perspectives

BACKGROUND Communication and swallowing changes are prominent in Parkinsons disease, but there remains a lack of information regarding the experiences and expectations of people with Parkinsons disease in respect of speech-language therapy (SLT) services. AIMS To conduct a survey of people with Parkinsons disease and their carers in the United Kingdom to elicit their views concerning communication and swallowing changes in Parkinsons disease and the support they envisage in helping with these changes. METHODS & PROCEDURES A national survey utilizing a questionnaire developed for the project, accessible by people with Parkinsons disease in web-based, e-mail or paper forms. OUTCOMES & RESULTS A total of 168 people with Parkinsons disease (median = 7 years since diagnosis, range = 0.5-30) and 47 carers who provided their impression of the experience of the PwPD responded. Of these 215, 92 (43%) had no contact with SLT services. In general those who had seen an SLT found it a positive experience. Pointers for improvement centred around timing, intensity, duration and access to SLT as well as issues around transfer and maintenance of gains outside of clinic and (lack of) attention to psychosocial dimensions. Availability of ongoing support as the situation evolved and access to SLT when it was needed were two prominent features desired of a responsive service. CONCLUSIONS & IMPLICATIONS Responses suggest that when SLT is available it offers positive support, but respondents felt (re)access when and where SLT is needed could improve, as well as what aspects of swallowing and communication were addressed in assessment and therapy. We reflect on possible recommendations to address the challenges for SLT services in considering organization and content of provision.

Information in dementia care: sense making and a public health direction for the UK?

Providing information is a core focus of policy and practice in dementia care. Information is a vehicle through which people can be enabled or disabled, so it is essential that we ensure that information is available in a way that is accessible and relevant for people with dementia and that it enables personal aspiration and collective identity to be advanced in a way that is to the benefit of those living with dementia. People with dementia need information to support autonomy in making decisions and in acting on those decisions. Information must be provided in a way that is appropriate to the individual and to achieve that requires knowledge of the needs of that individual. However, maintaining autonomy includes, but involves much more than, the provision of information - others need to listen and hear their views and be prepared to act on them. As professionals, we must be aware that the (dementia) information we provide may disrupt the biographical narrative that people with dementia value. Thus, a person-centred approach encourages the sharing of knowledge and information. The (mis)use of information also impacts on the way that society disables, discriminates and applies barriers against people with disability.