Role of community pharmacists in the use of antipsychotics for behavioural and psychological symptoms of dementia (BPSD): A qualitative study

Objective This study aimed to use qualitative methodology to understand the current role of community pharmacists in limiting the use of antipsychotics prescribed inappropriately for behavioural and psychological symptoms of dementia. Design A qualitative study employing focus groups was conducted. Data were analysed using thematic analysis. Setting 3 different geographical locations in the England. Participants Community pharmacists (n=22). Results The focus groups identified an array of factors and constraints, which affect the ability of community pharmacists to contribute to initiatives to limit the use of antipsychotics. 3 key themes were revealed: (1) politics and the medical hierarchy, which created communication barriers; (2) how resources and remit impact the effectiveness of community pharmacy; and (3) understanding the nature of the treatment of dementia. Conclusions Our findings suggest that an improvement in communication between community pharmacists and healthcare professionals, especially general practitioners (GPs) must occur in order for community pharmacists to assist in limiting the use of antipsychotics in people with dementia. Additionally, extra training in working with people with dementia is required. Thus, an intervention which involves appropriately trained pharmacists working in collaboration with GPs and other caregivers is required. Overall, within the current environment, community pharmacists question the extent to which they can contribute in helping to reduce the prescription of antipsychotics

From Cradle to Grave: A Hermeneutic-Phenomenological Exploration of Living and Dying with Niemann-Pick Disease Type C.

This thesis explores the lived experience across the lifespan of living and dying with Niemann- Pick disease type C (NPC). NPC is a neurodegenerative disease with no cure. One can become symptomatic at any age and the prognosis is often unclear. This emphasises the unpredictable nature of the disease and the wide-ranging impacts it can have on a person’s life. Although work is being conducted into understanding the disease, there has been no research into understanding the illness experience. Incurable illness struggles to find a place in a society where the clinical gaze dominates and the acceptance of death is resisted. This thesis sought to understand the meanings associated with living with this rare disease at a lifeworld level. It is through such exploration that we can see the intimate links between self-body-world and understand such a critical existential issue. Drawing on Heideggerian notions of at-homeness and homelessness, this series of studies focused on the existential nature of illness; the vulnerabilities and possible freedoms. Taking a multiperspectival approach to the interconnected lifeworlds of the person diagnosed and their family caregivers, three studies were conducted. The first explores living with NPC from a child’s perspective; the second focuses on adults’ experiences; and the last looks at end-of-life care and the dying experience for two families whose child has died from NPC. All three emphasised that illness has wider social and cultural implications that demand political and therapeutic intervention. From a re-analysis of these results, two quality of life scales for children and adults with NPC were developed and a reflective chapter on the novel use of phenomenology to develop items for these scales is presented. I make suggestions based on the results that a lifeworld understanding of these families’ experiences is necessary within medical consultations, meaningfully engaging with what it means to be human

Reviewing the evidence base for the Children and Young People Safety Thermometer (CYPST):a mixed studies review

The objective was to identify evidence to support use of specific harms for the development of a children and young people's safety thermometer (CYPST). We searched PubMed, Web of Knowledge, and Cochrane Library post-1999 for studies in pediatric settings about pain, skin integrity, extravasation injury, and use of pediatric early warning scores (PEWS). Following screening, nine relevant articles were included. Convergent synthesis methods were used drawing on thematic analysis to combine findings from studies using a range of methods (qualitative, quantitative, and mixed methods). A review of PEWS was identified so other studies on this issue were excluded. No relevant studies about extravasation injury were identified. The synthesized results therefore focused on pain and skin integrity. Measurement and perception of pain were complex and not always carried out according to best practice. Skin abrasions were common and mostly associated with device related injuries. The findings demonstrate a need for further work on perceptions of pain and effective communication of concerns about pain between parents and nursing staff. Strategies for reducing device-related injuries warrant further research focusing on prevention. Together with the review of PEWS, these synthesized findings support the inclusion of pain, skin integrity, and PEWS in the CYPST

Preliminary development of proxy-rated quality-of-life scales for children and adults with Niemann-Pick type C

OBJECTIVES: Niemann-Pick disease type C (NPC) is a rare life-limiting disease for which there is no cure. No scales currently exist to measure the impact of medication, physical therapy or clinical trials. The aim of this study was to develop age-appropriate Quality-of-Life (QoL) scales to measure the impact of NPC on children and adults. DESIGN: Scale development study using a phenomenological approach to data generation and analysis. METHODS: Fourteen interviews were conducted with people living with NPC and/or their parents/carers. Themes were generated and examined against an existential-phenomenological theory of wellbeing. A matrix was constructed to represent the phenomenological insight gained on participants' subjective experiences and a bank of items that were related to their QoL was developed. RESULTS: NPC quality-of-life questionnaires for children (NPCQLQ-C) and adults (NPCQLQ-A) proxy prototype scales were produced and completed by 23 parents/carers of children (child age mean = 8.61 years) and 20 parents/carers of adults (adult age = 33.4 years). Reliability analysis resulted in a 15-item NPCQLQ-C and a 30-item NPCQLQ-A, which showed excellent internal consistency, Cronbach's α = 0.925 and 0.947, respectively. CONCLUSION: The NPCQLQ-C and NPCQLQ-A are the first disease-specific QoL scales to be developed for people living with NPC. This novel approach to scale development values the experiential, real life impact of living with NPC and focused on the lived-experiences and impact on QoL. The scales will enable healthcare professionals and researchers to have a better understanding and quantifiable measurement of the impact of living with NPC on a patient's daily life

Exploring the evidence base for how people with dementia and their informal carers manage their medication in the community:a mixed studies review

BACKGROUND: Little is known about the general medicines management issues for people with dementia living in the community. This review has three aims: firstly to explore and evaluate the international literature on how people with dementia manage medication; assess understanding of medicines management from an informal carers perspective; and lastly to understand the role that healthcare professionals play in assisting this population with medicines management. METHODS: A mixed studies review was conducted. Web of Knowledge, PubMed and Cochrane Library were searched post-1999 for studies that explored medicines management in people with dementia dwelling in the community, and the role healthcare professionals play in supporting medicines management in people with dementia. Following screening, nine articles were included. Data from included studies were synthesised using a convergent synthesis approach and analysed thematically to combine findings from studies using a range of methods (qualitative, quantitative and mixed methods). RESULTS: Four themes were generated from the synthesis: The nature of the disease and the effects this had on medicines management; the additional responsibilities informal carers have; informal caregivers' knowledge of the importance of managing medication and healthcare professionals' understanding of medicines management in people with dementia. Consequently, these were found to affect management of medication, in particular adherence to medication. CONCLUSIONS: This review has identified that managing medication for people with dementia dwelling in the community is a complex task with a frequently associated burden on their informal caregivers. Healthcare professionals can be unaware of this burden. The findings warrant the need for healthcare professionals to undergo further training in supporting medicines management for people with dementia in their own homes