RESUMEN
AIM: This paper reports a study of patients' experiences of this relatively new technology, and explores possible strategies for defining, delineating and addressing patients' concerns, problems and needs. BACKGROUND: The number of patients in the community relying on percutaneous endoscopic gastrostomy for their nutritional needs is increasing, but percutaneous endoscopic gastrostomy feeding is not problem-free. However, few studies report on its impact from a patient perspective. METHODS: Twenty adults with long-term percutaneous endoscopic gastrostomies were interviewed in their own homes, using both semi-structured and structured approaches. Qualitative data were analysed thematically and related to a symptom checklist and an established quality of life measure, the Short Form-12. FINDINGS: Most participants felt that insertion of a percutaneous endoscopic gastrostomy had been life-saving, but found that percutaneous endoscopic gastrostomy feeding came to dominate their lives and was associated with an appreciable "burden of treatment". Some, but not all, of the problems recounted were unavoidable: percutaneous endoscopic gastrostomy feeding inevitably imposed physical restrictions on mobility; 17/20 participants had experienced serious technical problems with their percutaneous endoscopic gastrostomy tubes. On structured questioning, all interviewees had some, potentially treatable, gastrointestinal symptoms, and eight had continuous problems. In some cases, the burden of treatment was exaggerated by being unanticipated and, for 13 patients, difficulties with care provided by non-specialist services. Describing this "burden of treatment" for each patient required both a narrative and a structured approach: without the symptom checklists, some important and treatable problems were missed. Both physical and mental health Short Form-12 scores were low, and mental health scores were congruent with the interview data. CONCLUSIONS: It might be possible to reduce the "burden of treatment" identified by incorporating a structured approach to patient monitoring and by reviewing the occupational territories of specialist and non-specialist practitioners. Further research with larger numbers of participants is needed to explore the integration of narrative and quantitative data when determining patients' clinical needs.
Asunto(s)
Gastrostomía/psicología , Adulto , Anciano , Anciano de 80 o más Años , Endoscopía Gastrointestinal/efectos adversos , Endoscopía Gastrointestinal/psicología , Nutrición Enteral/efectos adversos , Nutrición Enteral/psicología , Femenino , Gastrostomía/efectos adversos , Humanos , Intubación Gastrointestinal/efectos adversos , Intubación Gastrointestinal/psicología , Masculino , Persona de Mediana Edad , Satisfacción del Paciente , Investigación Cualitativa , Calidad de Vida , GalesRESUMEN
There is a paucity of information regarding the extent and nature of caring provided by minority ethnic communities. The proportion of older people from these communities will dramatically increase in the next 20 years, which will be accompanied by increasing health and social care needs and an increased demand for carers. A qualitative, exploratory study was conducted to identify the health and social care needs of informal carers, who were caring for a dependent adult from a Bangladeshi community in South Wales, UK. This paper focuses on Bangladeshi carers' access to formal support services provided by the statutory, private and voluntary sectors to assist them with their caring responsibilities. The findings are based on data collected using face-to-face, focused interviews with 20 Bangladeshi carers. Purposive and snowball sampling were used to recruit the sample. The data were analysed using thematic content analysis. The dimensions of accessibility and equity of quality of care were drawn upon to aid understanding of the findings. Bangladeshi carers faced a number of barriers in accessing health and social service provision, which impeded uptake of these services. Additionally, there was evidence of inequity in service provision. Recommendations for improving the accessibility of health and social care services are proposed, which may assist in promoting more equitable services for carers from the Bangladeshi community.