Felicity Smith

Young people's experiences of managing asthma and diabetes at school.

Purpose: To examine the experiences and concerns of young people and their parents regarding the management of medication for asthma or diabetes whilst at school. Methods: Face-to-face semi-structured interviews were conducted with 69 young people aged 8–15 years (43 with asthma and 26 with diabetes) and their parents (138 interviews in total) in their own homes. Respondents were recruited through randomly selected general practice surgeries in contrasting areas in South East England. Interviews were audio-recorded, transcribed verbatim and analysed using established qualitative analytical procedures. Results: Young people with asthma and diabetes discussed difficulties regarding access to and use of their medicines at school which may jeopardise optimal condition management. School medicines policies could be a further hindrance. Young people endeavour to find ways to accommodate their medication and condition related needs whilst at school, in an attempt to limit the impact of their condition upon school activities such as sport, school trips and relationships with peers. Parents expressed concern regarding the awareness and levels of support available to their sons/daughters, in particular if a crisis should develop. Discussion: In order to ensure optimal care, there is a need for the development of protocols tailored to the needs of young people with different conditions. These should preferably be devised in partnership between the young person, their parents and the school to ensure that the flexibility and support required for optimal management are offered.

The paradoxical role of antidepressant medication - returning to normal functioning while losing the sense of being normal

Background: The development of healthcare services which address patients perspectives of treatment and illness has been advocated. However, little is known about patients beliefs and experiences of taking antidepressant medication. Aims: The current study aimed to identify factors of importance to patients beginning courses of antidepressant medication, in order to inform the development of partnerships between patients and healthcare professionals. Method: Patients beginning courses of antidepressant medication were recruited from general practice surgeries. Semi-structured interviews were performed. Interviews were audiotaped, transcribed verbatim and coded. Results: Antidepressant medication was found to have a paradoxical role in affecting the return to normal life and functioning. Medication enabled respondents to return to normality by reducing symptoms associated with the condition. However, it also had a stigma attached which reduced interviewees sense of being normal. Respondents reported mechanisms of dealing with stigma, the majority of which reconciled taking antidepressant medication with previous self identity. Conclusion: Knowledge of mechanisms used to deal with stigma may aid healthcare professionals in building partnerships with patients with a diagnosis of depression. Declaration of interest: None.

The roles of informal carers in the management of medication for older care‐recipients

Objective — To document the roles of informal carers in the management of medication for older care‐recipients and to relate this to carers coping and health.

Partnerships between older people and their carers in the management of medication.

UNLABELLEDnBackground.u2002 Responsibility for medication can be an integral part of the informal caring role. Aims and objectives.u2002 To explore partnerships between older people and their carers in the management of medication and consider the implications for health professionals. Methods.u2002 Older people and their carers were identified through community pharmacies in four randomly selected areas of England. Data regarding their activities, responsibilities and experiences of managing medication were collected in semi-structured interviews conducted in respondents own homes. Ninety-four transcripts relating to 47 older people and their associated carers were analysed using a qualitative approach. Results.u2002 Responsibility for medication was shared to varying extents between older people and their carers, and different patterns of partnership were identified. Differing perspectives between older people and their carers regarding the role, purpose and need for medication were revealed. Underlying these perspectives were issues concerning the sharing/concealment of information, autonomy and control. Caring was also described as a dynamic process. Older people and carers commented on how sharing responsibilities for medication varied on a day-to-day basis, as well as expressing concern regarding the changing needs of the older person and the carers capacity to cope.nnnCONCLUSIONSnu2002 Older people and their carers work together in diverse and sometimes complex ways to manage medication. Problems included dilemmas relating to the sharing of information, patient determination, disputes about the control of medication and concerns about the future.nnnRELEVANCE TO PRACTICEnu2002 These patterns of partnership need to be recognized and taken into account by health professionals when providing information, advice and support. They need to listen for indications of differing perspectives and be aware of their possible implications for adherence to medication regimens. In caring for older people, health professionals need to find a balance that respects their autonomy whilst providing support for carers to enable them to be effective in their roles.

Public engagement workshop: How to improve medicines for older people?

Public engagement in medication management has become more and more important in promoting population health. A public engagement workshop attended by 78 members of the geriatric community, family carers as well as professionals from academic research, industry and regulatory agencies entitled How to improve medicines for older people? took place on the 2nd July 2013 at the University College London (UCL) School of Pharmacy. The main aim of the event was to provide a dynamic environment for information exchange and to identify ways of improving current and future geriatric drug therapy. The day opened with presentations from UCL School of Pharmacy researchers on the use of medicines at home, formulations, administration devices and multi-component compliance aids (MCAs) whilst a representative from UCL Interaction Centre gave an insightful presentation on human errors and resilience strategies regarding medication use. These opening presentations encouraged participants to share their own experiences as well as initiating a lively debate. Following the plenary presentations, the workshop was divided into 8 groups for parallel discussion session. These opinion sharing sessions witnessed fruitful discussions between patients, carers and researchers. The day closed with a panel session of representatives from the European Medicines Agency (EMA), the Medicines and Healthcare products Regulatory Agency (MHRA), the Geriatric Medicines Society and Guys and St. Thomas NHS Foundation Trust (GSTT). Participants were encouraged to voice their questions, concerns and recommendations about medications. The main concern expressed by both patients and carers from the workshop were (but are not limited to) formulation changes, MCA accessibility difficulties, interactions of different medicines, carers concerns with the administration of medicines and not having enough knowledge of services provided by community pharmacists i.e. medicines use reviews (MURs) or new medicine service (NMS). Overall, this workshop created a useful forum for members of the geriatric community, their carers as well as research and industrial professionals to have an input in the improvement and management of geriatric drug therapy and this event also provided an excellent opportunity for the researchers to share the latest research innovations with attendees.

Assisting people with dementia with their medicines: experiences of family carers

Many family carers provide assistance with medicines that is vital for optimal clinical outcomes. Medicines‐related tasks are known to contribute to carer burden and stress. This study examined the experiences of family carers when providing medicines‐related assistance for a person with dementia, to indicate how services could become more responsive to the specific needs of this group of carers.

Implementing a structured education program for children with diabetes: lessons learnt from an integrated process evaluation.

Background There is recognition of an urgent need for clinic-based interventions for young people with type 1 diabetes mellitus that improve glycemic control and quality of life. The Child and Adolescent Structured Competencies Approach to Diabetes Education (CASCADE) is a structured educational group program, using psychological techniques, delivered primarily by diabetes nurses. Composed of four modules, it is designed for children with poor diabetic control and their parents. A mixed methods process evaluation, embedded within a cluster randomized control trial, aimed to assess the feasibility, acceptability, fidelity, and perceived impact of CASCADE. Methods 28 pediatric diabetes clinics across England participated and 362 children aged 8–16u2005years, with type 1 diabetes and a mean glycosylated hemoglobin (HbA1c) of 8.5 or above, took part. The process evaluation used a wide range of research methods. Results Of the 180 families in the intervention group, only 55 (30%) received the full program with 53% attending at least one module. Only 68% of possible groups were run. Staff found organizing the groups burdensome in terms of arranging suitable dates/times and satisfactory group composition. Some staff also reported difficulties in mastering the psychological techniques. Uptake, by families, was influenced by the number of groups run and by school, work and other commitments. Attendees described improved: family relationships; knowledge and understanding; confidence; motivation to manage the disease. The results of the trial showed that the intervention did not significantly improve HbA1c at 12 or 24u2005months. Conclusions Clinic-based structured group education delivered by staff using psychological techniques had perceived benefits for parents and young people. Staff and families considered it a valuable intervention, yet uptake was poor and the burden on staff was high. Recommendations are made to inform issues related to organization, design, and delivery in order to potentially enhance the impact of CASCADE and future programs. Current Controlled Trials ISRCTN52537669.

Challenges to optimal medicines use in people living with dementia and their caregivers: A literature review

Dementia is fast becoming a global concern due to a demographic shift towards an older population. Many studies have shown that caring for a family member or friend has a profound and negative impact on the physical, emotional and psychosocial aspects of the caregivers life. One significant activity that a family caregiver undertakes is assistance with the management of medicines. This review was undertaken to ascertain what the issues are that affect optimal medicines use from the perspectives of people living with dementia and their caregivers, both in the community and care home settings. A literature search was conducted using electronic databases, employing a combination of search terms. A total of 16 studies met the inclusion criteria. Six broad themes were identified, together with some recommendations to improve medicines use in people with dementia. Challenges to medicines use centred on medicines management and administration, the impact on the caregiver and care recipient, their partnership and interface with formal care. Future research should focus on developing targeted interventions that can overcome these challenges to achieve optimal medicines use.

Blogging as a viable research methodology for young people with arthritis: a qualitative study.

Background The development of services that are responsive to the needs of users is a health policy priority. Finding ways of engaging young people in research to gain insights into their particular experiences, perspectives, and needs is vital but challenging. These data are critical to improving services in ways that meet the needs of young people. Objective Our aim was to evaluate Web-based blogging as a viable method for understanding the daily experiences and condition management strategies of young people with juvenile arthritis. Methods To meet the objectives of the study, a qualitative approach was required to gather information on the experiences and perspectives of young people regarding the management of their condition and its daily impact. In collaboration with a group of young people with arthritis, a custom website was developed. This website provided the opportunity for young people (aged 11-19) with arthritis from a United Kingdom pediatric hospital to contribute blogs. It was designed so that young people were free to write about whatever was important to them, but the site also included some structure and prompts to facilitate the writing of blogs. Qualitative analytical procedures were employed, supported by NVivo software. Results Engagement in the study by young people was variable in terms of their participation rates, frequency of website visits, and the length of their blogs. Young people used the site in different ways, some responding to the website categories and prompts that the team created, while others used it as a diary to record their experiences and thoughts. In line with principles of qualitative inquiry, the data collection was participant-led. Young people were in control of what, how much, and how often they wrote. However, some young people expressed difficulty regarding knowing what they should blog about. For a number of reasons, discussed here, the blogs may also not be fully reflective of experiences and perspectives of the participants. However, the data obtained provided insights into young people’s experiences of living with arthritis and their use of medicines in the context of their daily lives. Conclusions Web-based research with young people presents opportunities and challenges for researchers. Web-based blogging methodology has the potential to give young people and parents the space and empowerment to express their own ideas and concerns. However, this project suggests that it might not be the best way to engage a large diverse group of young people and might most effectively be combined with other approaches. Despite these limitations, the study provided valuable data about the experience and impact of living with a long-term condition from the perspectives of young people with arthritis.

Effectiveness of a structured educational intervention using psychological delivery methods in children and adolescents with poorly controlled type 1 diabetes: a cluster-randomized controlled trial of the CASCADE intervention

Introduction Type 1 diabetes (T1D) in children and adolescents is increasing worldwide with a particular increase in children <5u2005years. Fewer than 1 in 6 children and adolescents achieve recommended glycated hemoglobin (HbA1c) values. Methods A pragmatic, cluster-randomized controlled trial assessed the efficacy of a clinic-based structured educational group incorporating psychological approaches to improve long-term glycemic control, quality of life and psychosocial functioning in children and adolescents with T1D. 28 pediatric diabetes services were randomized to deliver the intervention or standard care. 362 children (8–16u2005years) with HbA1c≥8.5% were recruited. Outcomes were HbA1c at 12 and 24u2005months, hypoglycemia, admissions, self-management skills, intervention compliance, emotional and behavioral adjustment, and quality of life. A process evaluation collected data from key stakeholder groups in order to evaluate the feasibility of delivering the intervention. Results 298/362 patients (82.3%) provided HbA1c at 12u2005months and 284/362 (78.5%) at 24u2005months. The intervention did not improve HbA1c at 12u2005months (intervention effect 0.11, 95% CI −0.28 to 0.50, p=0.584), or 24u2005months (intervention effect 0.03, 95% CI −0.36 to 0.41, p=0.891). There were no significant changes in remaining outcomes. 96/180 (53%) families in the intervention arm attended at least 1 module. The number of modules attended did not affect outcome. Reasons for low uptake included difficulties organizing groups and work and school commitments. Those with highest HbA1cs were less likely to attend. Mean cost of the intervention was £683 per child. Conclusions Significant challenges in the delivery of a structured education intervention using psychological techniques to enhance engagement and behavior change delivered by diabetes nurses and dietitians in routine clinical practice were found. The intervention did not improve HbA1c in children and adolescents with poor control. Trial registration number ISRCTN52537669, results.