Exploring attitudes towards dietary modification and nutritional supplementation in people with and without age-related macular degeneration

Age-related macular degeneration (AMD) is the leading cause for visual impairment and blindness registration in the developed world. Due to the large amounts of conflicting AMD research on the role of nutrition and antioxidant intake, it is difficult for patients and practitioners to determine which measures can be taken to slow down the disease progression. The aim of this research was to determine the beliefs and knowledge that patients with AMD have about nutrition, to identify whether their condition is preventing them from eating a healthy diet, and to discover what their diet consists of. For the initial study, 158 participants with AMD (mean age 79 ± 7.8 years) and 50 participants without AMD (mean age 67 ± 8 years) were recruited from the Macular Society helpline, or from optometric practice. Participants had a 25 minute telephone interview where a 36-question survey was completed. The survey elicited demographic information, and questions covered the knowledge that participants had on nutrition and their current diet. The results from this survey uncovered three major findings: 1) 100% of AMD participants felt that they do not have enough information and support from eye-care practitioners regarding nutrition, 2) AMD patients are confused over, and display a lack of knowledge of, which foods are beneficial for eye health and when and what nutritional supplements to take, evidenced by 65% of participants not taking the correct dosage 3) AMD patients are not eating enough nutrients that would be beneficial for their condition - consuming an average of 1.4mg of lutein and zeaxanthin rather than the recommended 10mg. A clinical decision-making aid was created as an intervention based upon these findings. The aim of the aid was to help eye-care practitioners give the correct nutritional advice to their patients. Founded on the AREDS 2 inclusion and exclusion criteria, practitioners are able to identify which patients could benefit from a nutritional supplement, and which patients could benefit from dietary modification. An evaluation of the aid with 72 qualified eye-care practitioners exhibited a statistically significant increase in confidence after using the aid for two weeks. An evaluation using 51 student optometrists showed a statistically significant increase in confidence and a statistically significant increase in appropriate management of patients after using the aid. This project has elicited findings that are significant for AMD patient education. It is hoped that through these studies, patients will receive consistent advice about the risk factors for AMD, the link between AMD and nutrition, and the importance of maintaining a healthy, well-balanced diet.

Insulin therapy in people with type 2 diabetes:opportunities and challenges?

Given the continued interest in defining the optimal management of individuals with type 2 diabetes, the Editor of Diabetes Care convened a working party of diabetes specialists to examine this topic in the context of insulin therapy. This was prompted by recent new evidence on the use of insulin in such people. The group was aware of evidence that the benefits of insulin therapy are still usually offered late, and thus the aim of the discussion was how to define the optimal timing and basis for decisions regarding insulin and to apply these concepts in practice. It was noted that recent evidence had built upon that of the previous decades, together confirming the benefits and safety of insulin therapy, albeit with concerns about the potential for hypoglycemia and gain in body weight. Insulin offers a unique ability to control hyperglycemia, being used from the time of diagnosis in some circumstances, when metabolic control is disturbed by medical illness, procedures, or therapy, as well as in the longer term in ambulatory care. For those previously starting insulin, various other forms of therapy can be added later, which offer complementary effects appropriate to individual needs. Here we review current evidence and circumstances in which insulin can be used, consider individualized choices of alternatives and combination regimens, and offer some guidance on personalized targets and tactics for glycemic control in type 2 diabetes. © 2014 by the American Diabetes Association.

Organizational response to employment under the ADA of workers with psychiatric disabilities: Four case studies

Title 1 of the Americans with Disabilities Act (ADA) requires all employers, public and private, with more than fifteen employees to provide reasonable accommodation to qualified individuals with disabilities if the accommodation would, within limits, allow the individual to perform the essential functions of the job. Seven years after Congress enacted the law and five years after the initial provisions became effective, little information is available about the experience of organizations faced with requests for workplace accommodation.^ The question addressed in this study is: How are organizations responding to the ADA mandate to fit individuals with psychiatric disabilities in the workplace? The data sources are three organizations that allowed access to this sensitive information, and a fourth that had two disability discrimination charges filed against it.^ A brute-force case method approach applied to the four organizations yields the following information: Attorneys are hesitant to allow inquiry into company policy owing to fear of litigation; workers are not disclosing and requesting accommodation; tacit accommodation of long-standing employees appears to be a regular practice; knowledge of the intent of the ADA makes a difference in terms of equality of treatment; and insensitivity to employee privacy results in an adversarial situation.^ Implications are relevant to the need to improve lines of communication between human resource, EEO, supervisory, and legal staff; consequences of failure to address accommodations on an explicit level; need for better understanding of the availability and use of outside resources for achieving accommodation; and improvement of self-advocacy and disclosure by the employees with disabilities. ^

The effect of self-operated prompts on leisure participation by persons with mental retardation

The use of permanent prompts for individuals with severe disabilities has been shown to be effective in acquiring new skills, improving the accuracy and maintenance of existing skills, and in eliminating the need for trainer prompts. However, this technology has not been evaluated for its potential impact in promoting leisure participation. In this study, two men with mental retardation were administered auditory and/or visual prompts to investigate their effect on increasing participation in a leisure activity. In addition, their performance was evaluated to establish whether continuous versus intermittent schedules of the prompts would influence participation. The data were collected using a partial interval observation system and evaluated using a multiple baseline and an alternating treatment design. While both men increased their participation modestly in the leisure activity, there was no substantial difference between the two prompting schedules. ^

*Postsecondary access for individuals with psychological disabilities: An analysis of federal rulings and institutional philosophies, *policies, and practices

This study was a qualitative investigation, with demographic quantitative features, of post-secondary educational access and legal guidelines for individuals with psychological disabilities. Although disability laws have positively influenced post-secondary educational attitudes and practices relative to accommodating many individuals with disabilities, prevailing stigmas regarding mental illness have discouraged the equal access to higher education for individuals with psychological disabilities. Little research concentrating on this area was found.^ Thirty-six relevant legal case decisions, focusing on a variety of realms of higher education, were scrutinized. The policies, procedures, and practices of six Southeastern United States universities were analyzed through official documents and participant responses from disability service providers and other university employees. Comparisons were made between legal cases, and within and between universities. Case findings also provided standards through which participating university practices could be studied.^ The legal analysis revealed that most institutions did not discriminate against individuals with psychological disabilities. Practices of a few of these institutions, however, suggested non-compliance despite favorable decisions on their behalf. Institutions found to have discriminatory practices were cited for inadequate procedures, or for presumptive assessments of the educational functioning levels of individuals with psychological disabilities.^ Participant university practices generally suggested disability law compliance; however, certain campus interventions were determined to be ineffective in identifying, addressing, and communicating about the educational needs of individuals with psychological disabilities. The most effective services for these individuals, who were described as rapidly increasing in number but lagging in self-advocacy and acceptance by others, went beyond legal requirements.^ Recommendations were made for institutional practices concerning disability-related documentation, written standards and operations, and student identification and referral. Directions for future research focused on study skills training for students; exposure of mental health professionals to client educational needs; and expansion of the current research, on a nationwide collegiate level, and a parallel analysis focusing on business and industry. ^

Validation of the English version of the Scale for Psychosocial Factors in Food Allergy and the relationship with mental health, quality of life, and self-efficacy

Background. The Scale for Psychosocial Factors in Food Allergy (SPS-FA) is based on the biopsychosocial model of health and was developed and validated in Chile to measure the interaction between psychological variables and allergy symptoms in the child. We sought to validate this scale in an English speaking population and explore its relationship with parental quality of life, self-efficacy, and mental health. Methods. Parents (n = 434) from the general population in the UK, who had a child with a clinical diagnosis of food allergy, completed the SPS-FA and validated scales on food allergy specific parental quality of life (QoL), parental self-efficacy, and general mental health. Findings. The SPS-FA had good internal consistency (alphas = .61-.86). Higher scores on the SPS-FA significantly correlated with poorer parental QoL, self-efficacy, and mental health. All predictors explained 57% of the variance in SPS-FA scores with QoL as the biggest predictor (β = .52). Discussion. The SPS-FA is a valid scale for use in the UK and provides a holistic view of the impact of food allergy on the family. In conjunction with health-related QoL measures, it can be used by health care practitioners to target care for patients and evaluate psychological interventions for improvement of food allergy management.

A monster that lives in our lives - experiences of caregivers of people with motor neuron disease and identifying avenues for support.

Background A developing body of evidence has provided valuable insight into the experiences of caregivers of people with motor neuron disease; however, understandings of how best to support caregivers remain limited.

Aim This study sought to understand concepts related to the motor neuron disease caregiver experience which could inform the development of supportive interventions.

Design A qualitative thematic analysis of a one-off semistructured interview with caregivers was undertaken.

Setting/participants Caregivers of people with motor neuron disease were recruited from a progressive neurological diseases clinic in Melbourne, Australia.

Results 15 caregivers participated. Three key themes were identified: (1) The Thief: the experience of loss and grief across varied facets of life; (2) The Labyrinth: finding ways to address ever changing challenges as the disease progressed; (3) Defying fate: being resilient and hopeful as caregivers tried to make the most of the time remaining.

Conclusions Caregivers are in need of more guidance and support to cope with experiences of loss and to adapt to changeable care giving duties associated with disease progression. Therapeutic interventions which target these experiences of loss and change are worth investigation.

Nurses' experiences of pain management for people with advanced dementia approaching the end of life: a qualitative study

AIMS AND OBJECTIVES: To explore hospice, acute care and nursing home nurses' experiences of pain management for people with advanced dementia in the final month of life. To identify the challenges, facilitators and practice areas requiring further support.

BACKGROUND: Pain management in end-stage dementia is a fundamental aspect of end of life care; however, it is unclear what challenges and facilitators nurses experience in practice, whether these differ across care settings, and whether training needs to be tailored to the context of care.

DESIGN: A qualitative study using semi-structured interviews and thematic analysis to examine data.

METHODS: 24 registered nurses caring for people dying with advanced dementia were recruited from ten nursing homes, three hospices, and two acute hospitals across a region of the United Kingdom. Interviews were conducted between June 2014 and September 2015.

RESULTS: Three core themes were identified: challenges administering analgesia, the nurse-physician relationship, and interactive learning and practice development. Patient-related challenges to pain management were universal across care settings; nurse- and organisation-related barriers differed between settings. A need for interactive learning and practice development, particularly in pharmacology, was identified.

CONCLUSIONS: Achieving pain management in practice was highly challenging. A number of barriers were identified; however, the manner and extent to which these impacted on nurses differed across hospice, nursing home and acute care settings. Needs-based training to support and promote practice development in pain management in end-stage dementia is required.

RELEVANCE TO CLINICAL PRACTICE: Nurses considered pain management fundamental to end of life care provision; however, nurses working in acute care and nursing home settings may be under-supported and under-resourced to adequately manage pain in people dying with advanced dementia. Nurse-to-nurse mentoring and ongoing needs-assessed interactive case-based learning could help promote practice development in this area. Nurses require continuing professional development in pharmacology. This article is protected by copyright. All rights reserved.

“There’s a Catch-22”. The complexities of pain management for people with advanced dementia nearing the end of life: a qualitative exploration of physicians’ perspectives

Background: Pain management is a cornerstone of palliative care. The clinical issues encountered by physicians when managing pain in patients dying with advanced dementia, and how these may impact on prescribing and treatment, are unknown. Aim: To explore physicians’ experiences of pain management for patients nearing the end of life, the impact of these on prescribing and treatment approaches, and the methods employed to overcome these challenges. Design: Qualitative, semi-structured interview study exploring: barriers to and facilitators of pain management, prescribing and treatment decisions, and training needs. Thematic analysis was used to elicit key themes. Settings/Participants: Twenty-three physicians, responsible for treating patients with advanced dementia approaching the end of life, were recruited from primary care (n=9), psychiatry (n=7) and hospice care (n=7). Results: Six themes emerged: diagnosing pain, complex prescribing and treatment approaches, side-effects and adverse events, route of administration, importance of sharing knowledge and training needs. Knowledge exchange was often practised through liaison with physicians from other specialties. Cross-specialty mentoring, and the creation of knowledge networks were believed to improve pain management in this patient population. Conclusions: Pain management in end-stage dementia is complex, requiring cross-population of knowledge between palliative care specialists and non-specialists, in addition to collateral information provided by other health professionals and patients’ families. Regular, cost- and time-effective mentoring and ongoing professional development are perceived to be essential in empowering physicians to meet clinical challenges in this area.

Statin withdrawal in people with dementia

Background: There are approximately 24 million people worldwide with dementia; this is likely to increase to 81 million by 2040. Dementia is a progressive condition, and usually leads to death eight to ten years after first symptoms. End-of-life care should emphasise treatments that optimise quality of life and physicians should minimise unnecessary or non-beneficial interventions. Statins are 3-hydroxy-3-methylglutaryl coenzyme A (HMG-CoA) reductase inhibitors; they have become the cornerstone of pharmacotherapy for the management of hypercholesterolaemia but their ability to provide benefit is unclear in the last weeks or months of life. Withdrawal of statins may improve quality of life in people with advanced dementia, as they will not be subjected to unnecessary polypharmacy or side effects. However, they may help to prevent further vascular events in people of advanced age who are at high risk of such events.

Objectives: To evaluate the effects of withdrawal or continuation of statins in people with dementia on: cognitive outcomes, adverse events, behavioural and functional outcomes, mortality, quality of life, vascular morbidity, and healthcare costs.

Search methods: We searched ALOIS (medicine.ox.ac.uk/alois/), the Cochrane Dementia and Cognitive Improvement Group Specialised Register on 11 February 2016. We also ran additional searches in MEDLINE, EMBASE, PsycINFO, CINAHL, Clinical.Trials.gov and the WHO Portal/ICTRP on 11 February 2016, to ensure that the searches were as comprehensive and as up-to-date as possible.

Selection criteria: We included all randomised, controlled clinical trials with either a placebo or 'no treatment' control group. We applied no language restrictions.

Data collection and analysis: Two review authors independently assessed whether potentially relevant studies met the inclusion criteria, using standard methodological procedures expected by Cochrane. We found no studies suitable for inclusion therefore analysed no data.

Main results: The search strategy identified 28 unique references, all of which were excluded.

Authors' conclusions: We found no evidence to enable us to make an informed decision about statin withdrawal in dementia. Randomised controlled studies need to be conducted to assess cognitive and other effects of statins in participants with dementia, especially when the disease is advanced.

An Action Research Study Engaging in the Use of Storyboarding as Research-based Approach to Teaching to Identify Issues Faced when Working with People with Dementia from Minority Ethnic Communities

The common view that research informs teaching assumes a linear approach whereby teaching is considered an output of research. This paper reports the findings of an action research project that identified the issues and challenges faced by those working across health and social care when working with people with dementia from minority ethnic communities. It explored the research-teaching nexus by using an approach to teaching that was research-based as opposed to research-led. A storyboarding technique was used which involved identifying and dissecting real life experiences for discussion. The realisation that each story was unique to the individual demonstrated the benefits and importance of education and training for applying a person-centred approach to dementia care. This project also revealed the benefits of actively engaging course participants with research moving them from being recipients of research, to research- active. Such a process not only encouraged their intrinsic motivations but, also, critical thinking and reflective practice to support deep learning. Such findings demonstrate the benefits of linking teaching with research.

Evaluation of Mobile Telephone Text Message Reminders for People with Antipsychotic Medication

Nonadherence to treatment is a worldwide problem among people with severe mental disorders. Patient treatment adherence may be supported with simple reminding methods e.g. text message reminders. However, there is limited evidence of its benefits. Intervention evaluation is essential in mHealth research. Therefore, this evaluative study was conducted. This study aimed to evaluate text message reminder use in encouraging patients’treatment adherence among people with antipsychotic medication. The data were collected between September 2011 and December 2013. First, a systematic literature review revealed that text message reminders were widely used in healthcare. However, its impacts were conflicting. Second, a sub-sample (n = 562) analysis showed that patients preferred humorous text message reminders and preferred to receive them in the morning, at the beginning of the week. Age, gender and marital status seemed to have different effects on the preferred amount and timing of the selected reminders. Third, a cross-sectional survey revealed that people with antipsychotic medication (n = 408) expressed overall satisfaction towards the reminder system. Finally, the evaluative design showed that patient recruitment for a randomized controlled trial concerning people with antipsychotic medication was challenging due to low rates of eligible participants. Follow-up drop-out rates varied depending on the data collection method. Participants’ demographic characteristics were associated with the risk of dropping out from the trial. This study suggests that text messages are a potential reminder system in healthcare services among people with antipsychotic medication. More research is needed to gain a comprehensive picture of the impacts and effectiveness of text message reminders.

Children with Learning Disabilities and Challenging Behaviour: Relationship between Parents and Professionals

This multi-perspectival Interpretive Phenomenological Analysis (IPA) study explored how people in the ‘networks of concern’ talked about how they tried to make sense of the challenging behaviours of four children with severe learning disabilities. The study also aimed to explore what affected relationships between people. The study focussed on 4 children through interviewing their mothers, their teachers and the Camhs Learning Disability team members who were working with them. Two fathers also joined part of the interviews. All interviews were conducted separately using a semi-structured approach. IPA allowed both a consideration of the participant’s lived experiences and ‘objects of concern’ and a deconstruction of the multiple contexts of people’s lives, with a particular focus on disability. The analysis rendered five themes: the importance of love and affection, the difficulties, and the differences of living with a challenging child, the importance of being able to make sense of the challenges and the value of good relationships between people. Findings were interpreted through the lens of CMM (Coordinated Management of Meaning), which facilitated a systemic deconstruction and reconstruction of the findings. The research found that making sense of the challenges was a key concern for parents. Sharing meanings were important for people’s relationships with each other, including employing diagnostic and behavioural narratives. The importance of context is also highlighted including a consideration of how societal views of disability have an influence on people in the ‘network of concern’ around the child. A range of systemic approaches, methods and techniques are suggested as one way of improving services to these children and their families. It is suggested that adopting a ‘both/and’ position is important in such work - both applying evidence based approaches and being alert to and exploring the different ways people try and make sense of the children’s challenges. Implications for practice included helping professionals be alert to their constructions and professional narratives, slowing the pace with families, staying close to the concerns of families and addressing network issues.

Positive narratives: the stories young people with Social, Emotional and Behavioural Difficulties (SEBD) tell about their futures

This research drew on positive psychology in order to offer an optimistic way of conceptualising the lives of young people who are often described as having ‘SEBD’ (Social, emotional, behaviour difficulties), now SEMH (Social, emotional, mental health) in the new SEND Code of Practice (2014). Positive psychology places emphasis on: the future, strengths, resources and potential, and suggests that negative experiences can build positive qualities. A life path tool was used in order to hear the stories that eight young people tell about themselves in the future. Narrative Oriented Inquiry (NOI) was used to analyse the themes of potential and growth in their stories. The young people in this research identified a range of strengths and resources in their lives that they had built as a result of earlier negative experiences. Their stories reveal their hopes and aspirations for the future. By giving these young people the opportunity to tell their stories this research permitted them to focus on where they were going, rather than where they had been.