Making yourself heard as an expert patient

Lowri Smith reflects on her journey towards becoming an expert on her congenital heart disease, and highlights the importance of self-advocacy for patients.

Delivery of the Dementia Friends programme on the MPharm degree course: a qualitative exploration of pharmacy students’ perspectives

Introduction A person-centred approach to dementia care has been advocated1, but limited literature exists on integration of this into pharmacist undergraduate education. The Alzheimer’s Society Dementia Friends programme was developed to change peoples’ perceptions and promote understanding of living with dementia. In 2019, the School piloted provision of Dementia Friends training; Level 3 MPharm students (n=102) were invited by email to participate as an optional part of a Clinical Therapeutics module. Sixty-three students (61.8%) attended the workshop, which combined Dementia Friends training with an interactive session facilitated by a person living with dementia (PLWD). Aim To explore undergraduate pharmacy students’ views and experiences of the Dementia Friends pilot. Methods All students who had attended the workshop were invited by email to participate in a focus group during February 2020. Participants provided written informed consent. The topic guide focused on students’ views of workshop delivery, improvements that could be made, their understanding of person-centred care, and the impact of the workshop on their clinical practice. The focus group was audio-recorded, transcribed verbatim, and analysed using thematic analysis. Results One focus group was conducted with eight students. Three overarching themes were identified: learning from an expert patient; importance of person-centred care; and dementia education during MPharm degree. Students valued the opportunity to learn from a PLWD and felt it allowed them to relate the condition to a real person: “it felt more personal so you could really connect with them [PLWD] and understand their experience”. Hearing about the ‘lived experience’ helped to contextualise learning from other methods of delivery, e.g. lectures: “you don’t know what’s going on in someone else’s life, and sometimes we’re all a bit quick to judge, I think [the workshop] put that into perspective”. Students described having greater understanding of person-centred care and taking a holistic approach to pharmaceutical care provision for PLWD: “it’s very important to take into account their quality of life…we can focus on the clinical but looking at the person as a whole actually helps their treatment” and “one of the things I found most interesting was that they might not remember the interaction but they will [retain] the feeling or emotion”. Students reported feeling more confident in engaging with PLWD following the workshop, which is something they would not have had the opportunity to learn from lectures alone: “If we hadn’t had that dementia training, I feel like I would still have no confidence chatting to dementia patients”. Students suggested that future Dementia Friends training should be delivered earlier in the MPharm degree course. Conclusion This study has shown that Dementia Friends training complemented students’ existing knowledge of dementia and increased their confidence to communicate with PLWD. The use of an expert patient was an effective way of supporting MPharm students to develop a person-centred approach to their professional practice. The study was limited to one university so findings may not be generalisable. However, these data provide a good basis for future development and evaluation of Dementia Friends training provision to MPharm students. References 1. Kitwood, T. M. Dementia reconsidered: the person comes first. 1997. Buckingham [England], Open University Press

Self-management: A patient’s perspective

This chapter is written by an expert patient who works with medical professionals. It covers a personal experience of being diagnosed and the psychosocial effects that arose from this period of time. It highlights the requirements for self-management in terms of retaining autonomy, models the definitions of self-management, and discusses the outcomes of different approaches. All chronic illness support, including self-management programmes, require an ongoing relationship between the patient and provider, including considerations of individual barriers; therefore the necessity for both social and medical support for patients’ self-management is also discussed, including differing needs for people from marginalized backgrounds, and suggestions on improving programmes is deliberated.

Efecto de un programa de paciente experto en insuficiencia cardiaca

Introducción: Una estrategia que ha mostrado ser efectiva para promover el autocuidado en los pacientes con falla cardiaca es la formación de diadas y grupos que brinden apoyo de pares para favorecer el logro de metas individuales.Objetivo general: Determinar el efecto de un programa de paciente experto en falla cardiaca en los conocimientos relacionados con la adherencia al tratamiento y en la satisfacción. Método: Se realizó un estudio piloto descriptivo de corte transversal en pacientes con diagnósticos de falla cardiaca en una institución de cuarto nivel. El tamaño de la muestra correspondió a toda la población con los criterios de restricción (N: 20 sujetos). Se implementó un programa de paciente experto durante 6 meses y se midieron los desenlaces de nivel de conocimientos y satisfacción. Para la recolección de la información se utilizó un test de conocimientos sobre adherencia al tratamiento y una encuesta de satisfacción. La información se procesó a través del programa IBM SPSS Statistics 23.0, y se realizó un análisis descriptivo con distribución de frecuencias absolutas y relativas. Resultados: Más del 95% de los pacientes mostró mejoría significativa en el nivel de conocimientos y el 85% refirió el nivel de satisfacción global más alto (muy satisfechos), reflejado en la dimensión de fidelización y efectividad. Conclusiones: El programa del paciente experto en insuficiencia cardiaca se constituye en una intervención costo-efectiva que proporciona capacidades para ayudar a otros pacientes a adquirir autoconfianza y habilidades en el manejo de su condición de salud. Introduction: One of the strategies that has shown improvement in self-care for patients with heart failure is the formation of dyads and groups to provide peer support and achieve individual goals. General objective: To determine the effect of an expert patient program on heart failure related to the knowledge about adherence to treatment and satisfaction.Method: A sectional-descriptive pilot study was conducted in patients with heart failure diagnoses in a fourth-level institution. The sample size represents the entire population with the restriction criteria (N: 20 subjects). An expert patient program was implemented for 6 months and the measured outcomes were level of knowledge and satisfaction. Data was gathered from a knowledge test on adherence to treatment and a satisfaction poll. Information was processed with IBM SPSS Statistics 23.0. The distribution of absolute and relative frequencies was performed by descriptive analysis. Results: More than 95% of patients showed improvement in the level of knowledge and 85% reported a high global level of satisfaction (very satisfied), reflected in the dimension of loyalty and effectiveness. Conclusions: The expert patient in heart failure program is a cost-effective intervention, which provides capabilities to help other patients gain self-confidence and skills to manage their health condition.