Deprivation of Liberty Safeguards: complexity, confusion and case law – a commentary

Purpose – As a healthcare professional caring for people who lack capacity, the author has noted a wide variation in knowledge and awareness by staff of the Deprivation of Liberty Safeguards (DoLS). The purpose of this paper is to examine the DoLS and the background to their coming into being, describes their operation and qualifying requirements, and the continuing problems with their application nationwide. Design/methodology/approach – Utilising a literature search of government papers, official reports of statutory bodies, and critical studies, it examines the central criticisms of DoLS, particularly the lack of a clear statutory definition of deprivation of liberty, and reports on the wide variation in knowledge of the legislation by staff in health and social care, and uneven application of the safeguards nationwide. Findings – It cites evidence from studies showing that even professionals with high levels of expertise in the field find the legislation confusing, and presents testimony from legal experts that case law has failed to clarify the issues for professionals. Originality/value – Finally, it argues that the legislation is now too complex to successfully amend, and tentatively suggests that, pending a government review to make the process more understandable, health care professionals make ‘precautionary’ applications for DoLS. The author argues that, notwithstanding its faults, the process is a worthwhile exercise in care planning and ensuring that people's care is in their best interests and the least restrictive available.

The value placed upon the facets that contribute to meaningful leisure by Activity Co-ordinators

Purpose – The purpose of this paper is to establish the value placed on the facets that contribute to a meaningful leisure occupation for the residents of a residential care facility by the staff that care for them. Design/methodology/approach – This was a service evaluation using a self-reported questionnaire, completed by six Activity Co-ordinators from the home of 158 individuals with a wide range of neuropalliative conditions. Findings – The cultural/historical components, the built and social environment, learning, life satisfaction and goal orientation were reported as the least valued facets, which make up a leisure occupation. The staff did, however; value the sense of health and capability, purpose, the feeling of being fully human and the sense of belonging that comes about through leisure. They also valued preventing boredom, opportunities for self-expression, creativity, achievement, and control. Additionally they valued opportunities to gain a clear sense of the rhythm of life, of self-identity, choice of occupation, and engagement in the occupation. Research limitations/implications – The findings highlight a variance between the perceptions of staff members who deal with the day-to-day leisure opportunities and decisions of the residents, and the literature of occupational science about what makes an occupation meaningful, and therefore is worthy of consideration when planning a leisure occupation. Practical implications – Personalised care requires consideration of the individual's cultural and historical background, the environment surrounding the occupation, opportunities for social interaction, individual learning, life satisfaction, and goal orientation when organising leisure opportunities. These facets are stressed because the participants undervalued them. Originality/value – The context of this paper is a subset of individuals with neurological disabilities who experience profound disabilities, and the attitudes of staff to their leisure lifestyle.

Caring with confidence for Huntington's disease

Purpose – The purpose of this paper is to describe the development of a psychoeducational support group for informal carers of people with Huntington's disease (HD). Design/methodology/approach – A clinical intervention was designed by a specialist HD service in consultation with HD carers, building on resources from a generic programme for carers, to meet the specific needs of HD families. A mixed methods, repeated measures design was used to examine any potential benefits this had on carer confidence and quality of life, and to ascertain the most beneficial aspects of the programme. Findings – At the end of the group, participants reported feeling more confident in caring for relatives with HD. Carers reported that gaining new information and being with other carers was helpful. Research limitations/implications – Although participant numbers were small, this pilot indicates that informal carers of HD patients appear to value psychoeducational support delivered in a group format. Evaluation of this type of intervention for carers warrants more rigorous investigation. Originality/value – There is a paucity of research that evaluates the impact of HD-specific carer interventions. This offers a description of a unique intervention that was aimed to increase knowledge and confidence among HD carers and to help provide the basis for more comprehensive services to be offered to carers of this devastating genetic illness.

How is ABI assessed and responded to in non-specialist settings? Is specialist education required for all social care professionals?

Purpose – The purpose of this paper is to examine the research into prevalence of acquired brain injury in non-ABI specialist services, the impact of the invisible aspects of executive impairment and loss of insight upon functioning and to question how this is assessed and managed by generalist services. Design/methodology/approach – A literature search was undertaken to identify where people with an ABI may come in to contact with services that are not specifically designed to meet their needs. Findings – ABI is prevalent amongst users of a variety of community, inpatient and criminal justice services. The common albeit invisible consequences of ABI complicate assessment, service use and or treatment particularly in the context of a lack of under pinning knowledge and experience amongst the staff in non-specialist ABI services. As a consequence risks to children and adults are increased, opportunities for rehabilitation and growth are lost and human potential squandered. Addressing the first stage in this process, developing knowledge of the consequences of ABI and how to assess need, is a pre-requisite for change. Practical implications – An absence of basic underlying knowledge of the consequences of ABI impacts upon assessment and so limits the effectiveness of services. A consequence of this is manifest in the over-representation of people with an ABI to be found in non-specialist settings. Originality/value –Little research is undertaken from a social and community perspective into the impact of ABI over the longer term for those who have no contact with specialist services and yet, quite clearly by their use of other services, have unidentified, unrecognised and un-responded to needs.

Social identity in people with multiple sclerosis: a meta-synthesis of qualitative research

Purpose – Many aspects of the self are lost as a consequence of having multiple sclerosis (MS). A person's identity can be altered by negative self-concepts, which are associated with poor psychological wellbeing and can lead individuals to reconstruct their sense of self. The Social Identity Model of Identity Change argues that previously established identities form a basis of continued social support, by providing grounding and connectedness to others to facilitate the establishment of new identities. Family support is a salient factor in adjustment to MS and may enable the establishment of new identities. The purpose of this paper is to investigate identity reconstruction following a diagnosis of MS. Design/methodology/approach – A meta-synthesis of the qualitative literature was conducted to examine the relationship between identity change and family identity of people with MS and other family members. Findings – In all, 16 studies were identified that examined identity change and the family following a diagnosis of MS. Coping strategies used by people with MS and their wider family groups, affect the reconstruction of people's identity and the adjustment to MS. Receiving support from the family whilst a new identity is constructed can buffer against the negative effects of identity loss. Practical implications – The family base is strengthened if MS-related problems in daily life are adapted into the individual and family identity using positive coping styles. Originality/value – This review provides an interpretation and explanation for results of previous qualitative studies in this area.

The importance of the wider society in rehabilitation of TBI and mental health sequelae

Purpose – The purpose of this paper is to review evidence for the importance of the wider society to combat mental health, long-term effects of TBI and the stigma and discrimination within the western society in particular. Design/methodology/approach – In favour of the neurobehavioural framework, studies included in this review are those conducted under such settings. Findings – Literature shows evidence of significant progress made under the neurobehavioural framework particularly, and, other intense rehabilitation schemes. Community rehabilitation is important for meeting emotional needs and furthering progress in this area, along side physical difficulties. Research limitations/implications – Access to all journal search engines was not possible in this case and thus there may be more research which may be useful in this paper. It is not based on any strict empirical evidence, however – it is based on experience and work in the field. More empirical research is needed in this area. Practical implications – Implications of this paper are to stress the importance of social rehabilitation, the documentation of behaviour and rehabilitation outcomes including measurements of success. Social implications – Social implications are infinite. Increasing the knowledge of TBI is necessary to allow survivors to live in the community with dignity, understanding and support. Awareness of such social disabilities may increase tolerance and patience among those least experienced in this aspect of disability. Communities may become more accepting and thus accommodate more for those living with TBI and ABI. Originality/value – There is less research on the qualitative data within services for rehabilitation in this field. A population whereby TBI/ABI symptoms and specific mental health sequelae coexist is less common and therefore can provide unique insight into the importance of community during rehabilitation.

Skills for life – evaluation of a group intervention for brain injury survivors

Purpose – The purpose of this paper is to evaluate a weekly, group-based occupational therapy (OT) intervention in an inpatient brain injury rehabilitation unit. The evaluation aims to assess whether this intervention incorporates evidence-based recommendations for executive functioning and positive social interactions. Design/methodology/approach – A literature review was carried out to identify those components deemed most effective for improvements of executive functions and group interventions. Systematic observations of the intervention were used to collect data matching the research requirements. The group intervention which was subject to the evaluation was a weekly OT activity called Life Skills Group. Participants were four brain injured patients, aged between 49 and 62 years and on average 4.5 month post injury. The group activities included the preparation, cooking and consuming of a meal. Findings – Some elements of evidence-based procedure for executive functioning training were observed, including repeated practice and errorless learning. The group provided opportunities for social interaction and peer support/modelling. The evaluation indicated opportunities for improving executive functions within the Life Skills Group setting, for instance, the consistent use of errorless practice, repetition and meta-strategy training. Social interventions were mainly initiated by the facilitation therapists and opportunities for social skills training and positive interactions between participants were overlooked. The evaluation concludes in a set of recommendations aimed at optimising the effectiveness of future groups. Originality/value – This paper gives an example how the use of research evidence can influence and optimise cognitive rehabilitation, social training and group interventions. Thus it is an attempt to highlight how occupational interventions and social interactions can be improved by a systematic evaluation. The evaluation provides a framework for how OT and social interventions can be planned, implemented and researched which will hopefully increase systematic outcomes studies in this field in the future.

Ethical issues in predictive testing for Huntington's disease an evidence based case discussion

Purpose – Diagnosis of Huntington's disease (HD) is with genetic tests and predictive testing for HD has been available for almost two decades. In the age of advancing genetic techniques, the question arises as to how the predictive tests can affect a person, his or her family and relatives, life choices and future. The paper aims to discuss these issues. Design/methodology/approach – A case study is presented demonstrating the complex issues surrounding genetic testing in HD. Relevant literature was then reviewed to further explore ethical issues linked to predictive testing for HD and also looked into findings on resolving this complex issue. Findings – Predictive testing in HD gives rise to ethical issues in social, legal, economical and imperatively personal aspects of an individual and society. Education and dispersion of knowledge to general society, regarding the test, its impact and also the illness would be a starting point in an attempt to resolve these issues. Need for counselling and support for patients in this context is vital and hence the imperative need to ensure provisions for standardised training and supply of professionals in this setting. Universal and enforceable framework along the lines of International Huntington Association recommendation should be adopted nationally. Originality/value – This paper presents a case study with significant value in demonstrating the challenges faced by genetic testing in HD, and provides insight in to this issue significant for all clinicians.