ABSTRACT
BACKGROUND: Data show that patients with autoimmune hepatitis have significantly reduced quality-of-life and that corticosteroids carry marked side effects. AIMS: This study explored patients' experiences of autoimmune hepatitis and its treatments; key aspects for developing safe and effective new approaches to therapy. METHODS: An anonymised, internet-based survey collected data including patient demographics, treatments, side-effects, impact on day-to-day life, sources of support and attitudes towards autoimmune hepatitis between December 2019-January 2020. Semi-structured interviews were conducted with 13 patients to further explore their support networks, treatment experiences and health priorities. Descriptive and quantitative analyses were undertaken using R and free text responses were subject to thematic analysis. RESULTS: In total, 270 survey responses were received (median age 55 years and 94% female). Perceived medication side-effects were reported by 66% (169/257) and 73% responded negatively about their experience of corticosteroids. The majority (62·3% [(109/175]) would 'definitely' or 'probably' consider clinical trial participation to improve their care. Only 18·7% (31/166) reported access to a specialist liver nurse and nearly half were involved in support groups. Interview and survey data suggested that major issues were stigma, loss of control and fatigue. CONCLUSIONS: This study provides insights into the realities of living with autoimmune hepatitis with clear issues around lack of support networks, need for patient empowerment and stigma surrounding liver disease. Patient priorities are better therapies to slow disease progression, avoiding corticosteroids and minimising side-effects. Patient willingness to participate in trials suggests that they are achievable provided they have the right design and clinical endpoints.
Subject(s)
Hepatitis, Autoimmune , Humans , Female , Middle Aged , Male , Hepatitis, Autoimmune/drug therapy , Surveys and Questionnaires , Quality of Life , Patient Participation , Qualitative ResearchABSTRACT
Reviews of programmes in Bangladesh, Benin, the Philippines, Sri Lanka, Uganda, and Uzbekistan sought to identify health policy and programmatic factors that influenced breastfeeding practices during a 10 to 15 year period. Exclusive breastfeeding rates and trends were analysed in six countries in general and from an equity perspective in two of them. Success factors and challenges were identified in countries with improved and stagnated rates respectively. The disaggregated data analysis showed that progress may be unequal in population subgroups, but if appropriately designed and implemented, a programme can become a "health equalizer" and eliminate discrepancies among different subgroups. Success requires commitment, supportive policies, and comprehensiveness of programmes for breastfeeding promotion, protection and support. Community-based promotion and support was identified as a particularly important component. Although health workers' training on infant feeding support and counselling was prioritized, further improvement of interpersonal counselling and problem solving skills is needed. More attention is advised for pre-service education, including a stronger focus on clinical practice, to ensure knowledge and skills among all health workers. Large-scale communication activities played a significant role, but essential steps were often underemphasized, including identifying social norms and influencing factors, ensuring community participation, and testing of approaches and messages.
Subject(s)
Breast Feeding , Health Education/methods , Health Promotion/methods , National Health Programs , Africa , Asia , Female , Health Education/organization & administration , Health Promotion/organization & administration , HumansABSTRACT
Volúmen que trata sobre el análisis de datos y la redacción de informes dentro de lo referente a la serie de capacitación en Investigación sobre Sistemas de Salud (ISS). Incluye: orientación relativa al taller sobre análisis de datos y redacción de informes ; descripción de variables ; tabulación cruzada de datos cuatitativos ; análisis de datos cualitativos ; selección de pruebas significancia y otros
