Coping, conversation tactics and marital interaction in persons with acquired profound hearing loss (APHL): correlates of distress

This study investigated coping strategies, conversation tactics, and marital interaction in acquired profound hearing loss (APHL) and compared emotionally stable (n = 15) and emotionally distressed (n = 7) participants. Nominated family members were assessed on most measures. Comparisons were also made in the subgroup of married participants. A combined distress criterion was derived from scores on standardized measures of anxiety, depression, hearing handicap, and post-traumatic stress. Groups were compared on the Ways-of-Coping Checklist, a newly devised measure of conversation tactics, and on the Couple Behaviour Report. It was found that distressed APHL participants were more likely to cope through avoidance, self-blame, and wishful thinking, and they used more avoidant tactics in conversation. The coping profile of family members did not differentiate distress groups. However, there was some indication of greater employment of coercive tactics by family members of distressed participants. The results are consistent with the view that the coping style of a person with APHL and the nature of their conversational interactions with family members contribute to their level of distress. Implications for audiological rehabilitation are discussed.

Living and coping with Parkinson's disease: Perceptions of informal carers

A review of the literature highlights the important role informal carers play in the provision of palliative care in the community. In order to explore the caring experience of relatives with Parkinson's Disease (PD), interviews were conducted with 26 informal family caregivers. Interviews were taped, transcribed and subjected to content analysis. All caregivers were spouses, the majority female (n=17) and all were responsible for providing physical, social and emotional care in the home. Although they viewed care giving as their role and duty, the results highlight the widespread burden of providing care on the emotional and physical health of the caregivers. The financial implications for providing care were outlined, with many reporting difficulty in accessing benefits. From the point of diagnosis, which had a huge emotional impact on relatives and carers, carers did not feel health professionals integrated them within the caring journey. Since diagnosis, carers commented on the lack of continued and coordinated care plans for relatives, resulting in symptoms being mismanaged and care opportunities for relatives and carers missed. Stereotypes of the meaning and timing of palliative care were common with many viewing it as being synonymous with cancer and not applicable to a person with PD. As the well-being of the informal carer directly influences the care of the person with PD, support interventions are required to relieve their burden, maximize outcomes and ensure targeting of services. © The Author(s) 2010.

Combating the mental health stigma with nostalgia

We report research implicating nostalgia as an intrapersonal means of warding off the stigmatization of persons with mental illness. We hypothesized and found that nostalgia about an encounter with a person with mental illness improves attitudes toward the mentally ill. In Experiment 1, undergraduates who recalled an encounter with a mentally ill person while focusing on central (vs. peripheral) features of the nostalgia prototype reported a more positive outgroup attitude. This beneficial effect of nostalgia was mediated by greater inclusion of the outgroup in the self (IOGS). In Experiment 2, undergraduates who recalled a nostalgic (vs. ordinary) interaction with a mentally ill person subsequently showed a more positive outgroup attitude. Results supported a serial mediation model whereby nostalgia increased social connectedness, which predicted greater IOGS and outgroup trust. IOGS and outgroup trust, in turn, predicted more positive outgroup attitudes. We ruled out alternative explanations for the results (i.e., mood, perceived positivity, and typicality of the recalled outgroup member). The findings speak to the intricate psychological processes underlying the prejudice-reduction function of nostalgia and their interventional potential. Copyright © 2013 John Wiley & Sons, Ltd.

Pharmacological interventions for dementia in people with Down Syndrome (Protocol).

Background: People with Down syndrome are vulnerable to developing dementia at an earlier age than the general population. Alzheimer’s disease and cognitive decline in people with Down syndrome can place a significant burden on both the person with Down syndrome and their family and carers. Various pharmacological interventions, including donepezil, galantamine, memantine and rivastigmine, appear to have some effect in treating cognitive decline in people without Down syndrome, but their effectiveness for those with Down syndrome remains unclear. Objectives: To assess the effectiveness of anti-dementia pharmacological interventions and nutritional supplements for treating cognitive decline in people with Down syndrome. Search methods In January 2015, we searched CENTRAL, ALOIS (the Specialised Register of the Cochrane Dementia and Cognitive Improvement Group), Ovid MEDLINE, Embase, PsycINFO, seven other databases, and two trials registers. In addition, we checked the references of relevant reviews and studies and contacted study authors, other researchers and relevant drug manufacturers to identify additional studies. Selection criteria: Randomised controlled trials (RCTs) of anti-dementia pharmacological interventions or nutritional supplements for adults (aged 18 years and older) with Down syndrome, in which treatment was administered and compared with either placebo or no treatment. Data collection and analysis Two review authors independently assessed the risk of bias of included trials and extracted the relevant data. Review authors contacted study authors to obtain missing information where necessaryMain results Only nine studies (427 participants) met the inclusion criteria for this review. Four of these (192 participants) assessed the effectiveness of donepezil, two (139 participants) assessed memantine, one (21 participants) assessed simvastatin, one study (35 participants) assessed antioxidants, and one study (40 participants) assessed acetyl-L-carnitine. Five studies focused on adults aged 45 to 55 years, while the remaining four studies focused on adults aged 20 to 29 years. Seven studies were conducted in either the USA or UK, one between Norway and the UK, and one in Japan. Follow-up periods in studies ranged from four weeks to two years. The reviewers judged all included studies to be at low or unclear risk of bias. Analyses indicate that for participants who received donepezil, scores in measures of cognitive functioning (standardised mean difference (SMD) 0.52, 95% confidence interval (CI) -0.27 to 1.13) and measures of behaviour (SMD 0.42, 95% CI -0.06 to 0.89) were similar to those who received placebo. However, participants who received donepezil were significantly more likely to experience an adverse event (odds ratio (OR) 0.32, 95% CI 0.16 to 0.62). The quality of this body of evidence was low. None of the included donepezil studies reported data for carer stress, institutional/home care, or death. For participants who received memantine, scores in measures of cognitive functioning (SMD 0.05, 95% CI -0.43 to 0.52), behaviour (SMD -0.17, 95% CI -0.46 to 0.11), and occurrence of adverse events (OR 0.45, 95% CI 0.18 to 1.17) were similar to those who received placebo. The quality of this body of evidence was low. None of the included memantine studies reported data for carer stress, institutional/home care, or death. Due to insufficient data, it was possible to provide a narrative account only of the outcomes for simvastatin, antioxidants, and acetylL-carnitine. Results from one pilot study suggest that participants who received simvastatin may have shown a slight improvement in cognitive measures. Authors’ conclusions Due to the low quality of the body of evidence in this review, it is difficult to draw conclusions about the effectiveness of any pharmacological intervention for cognitive decline in people with Down syndrome.

The Right to Appropriate and meaningful Education for Children with ASD

This paper will explore from a ‘child’s rights perspective’ the ‘right’ of children with autistic spectrum disorder (ASD) to appropriate and meaningful education.Human ‘rights’ principles within international law will be evaluated in relation to how they have been interpreted and applied in relation to achieving this ‘right’. The International Convention of the Rights of the Child (United Nations in Convention on the rights of the child, office of the high commissioner, United Nations, Geneva, 1989) and the convention on the rights of the person with disability (United Nations in Convention on the rights of person’s with disabilities and optional protocol, office of the high commissioner, United Nations, Geneva, 2006) amongst others will be utilised to argue the case for ‘inclusive’educational opportunities to be a ‘right’ of every child on the autistic spectrum. The efficacy of mainstream inclusion is explored, identifying the position that a ‘one size fits all’model of education is not appropriate for all children with ASD.

People with intellectual disabilities: promoting quality end of life care

Background: Internationally concerns have been highlighted about the quality of palliative care that people with intellectual disability receive. It has also been evidenced that people with intellectual disabilities are seldom referred to hospice and palliative care services. 

Aims: This study aimed to explore the experience of health and social care professionals in providing palliative care to people with intellectual disabilities. 

Methods An exploratory, qualitative design was used. A purposive sample of thirty health and social care professionals, working in intellectual disability and palliative care services, who had provided end-of-life care to adults with intellectual disabilities, were recruited to the study following informed consent. They were asked to reflect on a case scenario of a person with intellectual disability to whom they had provided end of life care. A semi-structured interview technique, with open questions and prompts, was used to explore their experiences and insights. The narrative from the case scenarios were content analysed using a recognised framework. 

Results: Three themes emerged from the data within the case scenarios: Identifying end of life care needs, meeting support needs and empowerment in partnership. Examples of good practice and issues in practice were apparent. 

Conclusion/ Discussion: This study contributes to the developing international evidence base to enhance end of life care for people with intellectual disabilities and provides further insights into this area of practice. Funder: HSC Research and Development Doctoral Fellowship Scheme

Understanding the Needs of People with Dementia and Family Carers

This is the first in a short series that presents case study examples of the positive work achieved by trusts who participated in the Royal College of Nursing's development programme to improve dementia care in acute hospitals. When a person with dementia is in hospital, poor understanding of individual needs and preferences can contribute to a lack of person-centred care. Similarly, the needs of family carers can often be overlooked and staff do not always appreciate these needs at such a stressful time. This article illustrates how three NHS trusts have addressed these issues. To help staff get to know patients with dementia, Salford Royal NHS Foundation Trust has implemented a patient passport. Similarly, The Shrewsbury and Telford Hospital NHS Trust has implemented a carer passport that overcomes the restrictions imposed by hospital visiting hours. Royal Devon and Exeter NHS Foundation Trust also focused on carers, holding a workshop to elicit feedback on what was important to them. This was a useful means of engaging with carers and helped staff to realise that even simple changes can have a significant effect.

Supporting the Supporter: Social Support, Stress, and Well-being among Caregivers of Children with Severe Disabilities

Thesis (Ph.D.)--University of Washington, 2014

Physical access for persons with disabilities

For persons with disabilities, the activities that able-bodied people take for granted can be major, often insurmountable challenges. Attempting to enter a restaurant for lunch with friends can result in lengthy and adversarial litigation if the facility is not accessible to a person with a disability or other mobility impairment. This litigation would be initiated after the individual was effectively refused service; a refusal based on hislher personal physical characteristics. If a shopping mall is not equipped with "access amenities", then the disabled person may be excluded from shopping there and thus exercising consumer freedom. If workplaces are not equipped to accommodate the access needs of persons with disabilities, then those people are effectively barred from gainful employment there. If a municipal goveniment building is inaccessible to disabled persons, then they may be excluded from participating in council meetings. These are all activities that the majority of the population enjoys as a matter of course, in that they represent the functions of a free citizen in a free society. If a person is excluded from such activities because of some personal characteristic, then that person is subjected to differential or discr~minatory treatment. The guarantees provided in Canadian feden! and provincial rights legislation, are such that people are not to be discriminated againsL Where buildings and facilities othen\iise open to the public are not accessible for persens with disabilities, then those people are being discriminated against. To challenge these discriminatory practices, individuals initiate complaints through the administrative justice system. To address the extent to which this is a problem, many sources were consulted. Constitutional lawyers, tribunal members, advocates for the disabled and land use planners were interviewed. Case law and legislation were reviewed. Literature on citizenship theory, dispute resolution and dispute avoidance was compiled and assessed. And, the field of land use planning was analyzed (drawing on the WTiter's educational and experiential background) as a possible alternative method for effecting systemic access for persons with disabilities. The conclusion of this study is that there does exist a proactive method for assuring access, a method that can apply the systemic remedy needed to deal with this problem. The current method, which is an adversarial and piecemeal complaint process, has proven ineffective in remedying this discrimination problem~ Failure to provide an appropriate remedy means that persons with disabilities will not enjoy the degree of citizen status enjoyed by the able-bodied. This is the current circumstance, and since equity is the aim of rights legislation, and since such legislative and administrative frameworks have failed in that purpose, then an alternative method is necessary. An alternative model is the one in which land use planning is based. It has conflict avoidance and conflict minimization as underpinnings. And, most importantly, land use planning is already a proyen method of combatting discrimination.

A Phenomenologically Sensitized Analysis of Images Depicting Stressed Embodiment in an Adolescent Male with Autism Spectrum Disorder (ASD)

Each person with Autism Spectrum Disorder (ASD) comes with unique characteristics (idiosyncratic) that give clues to the world they know (Connolly, 2008). It is through their body that they (a) know the world they are experiencing, (b) make meaning, and (c) express certain behaviours. I used Laban’s Movement Analysis (LMA) to practice an attuned and appreciative approach to describing and understanding the body movement in one severe manifestation of autism in an adolescent male. LMA observes human movement across many disciplines and can be applied in many contexts providing a body honoring discourse for description (Connolly, 2008). The framework examines movement in body, space, quality, and relation. Each theme provides a detailed description of the individual’s movement, thus, giving us a richer understanding of patterns and possible triggers to self-injurious behaviours (SIB). During the summer of August 2013, I participated in Brock University’s annual Autism Camp and worked with a 15 year old male named “Aaron” who manifests with low functioning autism. The purpose of my research project was to code and analyze a series of photos taken to help gain insight into movement patterns associated with stressed embodiment and self-injury in “Aaron”. As I understood more about these embodied expressions, I uncovered valuable information on how to read patterns and discover what triggers these events, thus providing strategies on how to help people do more refined observations and make meaning of the behaviour. Laban’s movement analysis provided a sensitized discourse appropriate to the embodied expressions depicted in the photos.

Resilience and Individualized Community Integration Interventions for Persons with Traumatic Brain Injuries

Investigators, caregivers, administrators and service users in the field of rehabilitation are increasingly interested in the concept of resilience, but the literature has very little to offer on interventions aimed at supporting the resilience of persons and their loved ones. This article describes the Personnalized Accompagnement Community Integration (ICII), which is intended to support the resilience of persons with moderate to severe traumatic brain injuries (TBIs). An ICII implementation is currently underway and is expected to support social participation and stimulate the resilience of persons with TBIs. It is based on four frames of reference: community integration founded on the person’s perception of their community integration, the ecosystemic model, the handicap production process (HPP) model, and the goal-setting process. ICII adopts an intervention perspective centered on the life plan of the person with a TBI.

Leveraging everyday technology for people living with dementia: a case study

– The purpose of this paper is to present the self-described “journey” of a person with dementia (Brian; author 3) in his re-learning of old technologies and learning of new ones and the impact this had on his life. Design/methodology/approach – This is a single case study detailing the participant's experiences collaborating with a researcher to co-create methods of facilitating this learning process, which he documented in the form of an online blog and diary entries. These were analysed using NVivo to reveal the key themes. Findings – Brian was able to relearn previously used technologies and learn two new ones. This lead to an overarching theme of positive outlook on life supported by person-centredness, identity and technology, which challenged negative perceptions about dementia. Research limitations/implications – The paper provides an example of how learning and technology improved the life of one person with dementia. By sharing the approach the authors hope to encourage others to embrace the challenge of designing and developing innovative solutions for people with a dementia diagnosis by leveraging both current mainstream technology and creating novel bespoke interventions for dementia. Originality/value – The personal perspective of a person with dementia and his experiences of (re-) learning provide a unique insight into the impact of technology on his life.

Interpreting communication of people with profound and severe learning difficulties

The present paper highlights some of the issues involved in interpreting the communication behaviours of people with profound and multiple learning difficulties (PMLDs). Both inference and intention can play an important role in the communication process, and this raises a number of difficulties and dangers where one of the communication partners is not in a position to correct misunderstandings. The present authors discuss the importance of validating communication and pose a number of key questions to ask those who are most significant in the life of a person with PMLDs. A case study is provided that illustrates a number of these issues.

Brief behavioural activation for adolescent depression: working with complexity and risk

Given the long-term negative outcomes associated with depression in adolescence, there is a pressing need to develop brief, evidence based treatments that are accessible to more young people experiencing low mood. Behavioural Activation (BA) is an effective treatment for adult depression, however little research has focused on the use of BA with depressed adolescents, particularly with briefer forms of BA. In this article we outline an adaptation of brief Behavioral Activation Treatment of Depression (BATD) designed for adolescents and delivered in eight sessions (Brief BA). This case example illustrates how a structured, brief intervention was useful for a depressed young person with a number of complicating and risk factors.

Can humming caregivers´ facilitate feeding during mealtime situations with persons with dementia? A qualitative study

Background. ‘Music Therapeutic Caregiving’, defined as when caregivers’ sing for or together with persons with dementia care situations, has been shown to facilitate the caring situation, and enhance positive and decrease negative expressions in persons with dementia. No studies about singing during mealtimes have been conducted, and this project was designed to elucidate this. However, since previous studies have shown that there is a risk that persons with dementia will start to sing along with the caregiver, the caregiver in this study hummed such that the person with dementia did not sing instead of eat. Aim. To describe professional caregivers’ experiences of humming during meal time while feeding persons with dementia. Method. An intervention with caregivers humming was implemented during lunch time. Focus group interviews were conducted to fetch the caregivers experiences. Qualitative content analysis was used to analyse the interviews. Results. The caregivers described that humming disseminated relaxation and joy, and awakened memories about the songs hummed which encouraged the persons with the dementia to join in the songs. They also described that humming seemed to make the persons with dementia associate with mealtime and could make them eat more. However it also revealed suspiciousness and agitation from the persons with dementia. Conclusion. Humming during mealtime revealed mainly positive as well as some negative influences. More and larger studies are needed to be able to draw general conclusions.