Barriers to Informal Caregiving of Persons Living with Dementia in Barbados: A Phenomenological Inquiry / Barreras al cuidado informal de personas con demencia en Barbados: una investigación fenomenológica

ABSTRACT Objective: To explore the barriers of primary informal caregivers to caring for persons living with dementia (PLWDs) in Barbados. Methods: A qualitative, phenomenological methodology was adopted. Eight in-depth, semistructured interviews were conducted with primary informal caregivers of PLWDs. Transcripts were analysed according to Giorgi's four-step phenomenological framework. Results: Four themes emerged: imbalanced family dynamics, financial and time constraints, dissatisfaction with formal care services, and misunderstanding of complex symptomatology. Conclusion: Understanding the lived experiences of informal caregiving highlighted the specific barriers to providing optimal care for PLWDs in Barbados. The 'Strategy and Plan of Action on Dementias in Older Persons (2015-2019)'by the Pan American Health Organization and the World Health Organization guides the support for caregivers, and this study provides context-based evidence to pursue effective approaches. Results are critical to the appropriate design of contextually appropriate training and services in support of informal caregiving.

RESUMEN Objetivo: Explorar las barreras que los cuidadores primarios informales enfrentan al cuidar personas con demencia (PCD) en Barbados. Métodos: Se adoptó una metodología cualitativa y fenomenológica. Se realizaron ocho entrevistas en profundidad, semiestructuradas, a cuidadores primarios informales de PCD. Las transcripciones fueron analizadas según el marco fenomenológico de cuatro pasos de Giorgi. Resultados: Surgieron cuatro temas: la dinámica familiar desequilibrada, las limitaciones de tiempo y finanzas, la insatisfacción con los servicios de atención formal, y la interpretación errónea de la sintomatología compleja. Conclusión: La comprensión de las experiencias vividas por los cuidadores informales fue clave en la detección de las barreras específicas que estos enfrentaban a la hora de brindar una atención óptima a PCD en Barbados. La 'estrategia y plan de acción sobre las demencias en las personas de edad (2015-2019) ' por la Organización Panamericana de la salud y la Organización Mundial de la Salud, sirve de guía al apoyo que ofrecen los cuidadores, y este estudio proporciona pruebas contextuales para buscar enfoques efectivos. Los resultados son fundamentales para diseñar de manera adecuada tanto el entrenamiento como los servicios contextualmente apropiados en apoyo al cuidado informal.

Exploring the reasons why Barbadian mothers consent, or do not consent for their preteen daughters to receive the HPV vaccine

OBJECTIVE: The aim of this qualitative study was to explore the reasons why Barbadian mothers consented or did not consent for their pre-teen daughters to receive the human papilloma virus (HPV) vaccine. DESIGN AND METHODS: Four focus groups, totaling 25 Barbadian mothers whose pre-teen daughters were eligible for the HPV vaccine during the 2013-2014 school year were conducted. The groups were homogenous with two groups consisting of mothers who consented, and two groups of mothers who did not consent. Each session was audio-recorded, and data were analyzed to examine emerging themes. RESULTS: A lack of information from the Ministry of Health and an inadequate time frame to make an informed decision were the most common reasons for parental non-consent to the HPV vaccine. Other reasons included: a fear of side-effects of the vaccine, a low perceived risk of persons within the 10 to 12 age group of contracting the HPV virus, negative advice (particularly from medical practitioners), and a lack of trust and confidence in the information provided by the Ministry of Health. The most common reasons for giving consent were: positive advice (especially from health care professionals), having had a past experience with the Human Papilloma Virus, a family history of cancer, or knowing someone diagnosed with a HPV infection or cervical cancer. CONCLUSION: There is a need for more public information in relation to the Human Papilloma Virus and the HPV vaccine. This will allow for informed decision making, which may contribute to an increased uptake of the HPV vaccine.

A phenomenological inquiry into approaches to informal caregiving of persons living with dementia

OBJECTIVE: To explore approaches use by informal caregivers in Barbados in caring for persons with dementia (PLWD). DESIGN AND METHODS: This study used a qualitative phenomenological approach. Recruitment was carried out via purposive sampling of adult primary informal caregivers of PLWD in Barbados. Data collection was carried out through in-depth, one-on-one, semi-structured interviews. Eight transcripts were analyzed according to Giorgi’s four-step analytic framework within ATLAS.ti data analysis software. RESULTS: The data were analysed and organized according to the following themes: 1. Guiding principles of care, including maintaining patience and optimizing the physical, social, and mental health of the PLWD, with a wide range of sources of personal guidance. 2. Facilitators to care, including intrinsic and extrinsic facilitators such as the assignment of meaning to the caregiving role, resignation from the caregiving role, having ample rest, support from the community, and support from children. 3. Barriers to care, including family issues, lack of time and money, dissatisfaction with formal care services, misunderstanding of the complexities of dementia symptomology, and recommendations for support. CONCLUSIONS: Each caregiver used unique strategies to manage his/her caregiving role by tapping on available resources while also strategically accommodating for difficulties encountered. There needs to be additional research in this extremely vital area. Services should be created/adapted to improve their support for informal caregivers to their unique needs.