Dying, death and bereavement: developing a national survey of bereaved relatives.

BACKGROUND: Assessing and measuring the experience and quality of care provided is central to the improvement of care delivery of all healthcare systems. This paper reports on the development of a survey instrument to capture the experiences of care at end of life from the perspective of bereaved relatives in the Republic of Ireland. METHODS: A multi-method, multi-stakeholder, sequential approach was adopted for this study. Items for inclusion in the survey instrument bank were identified through (1) a feasibility study and scoping literature review, (2) expert panel programme board review, (3) focus groups and (4) gap analysis. The following steps were undertaken to prioritise the items for inclusion in the final survey instrument: (1) a Delphi study (2) technical expert panel review (3) cognitive interviews with bereaved relatives and an (4) expert panel programme board review. RESULTS: Following an iterative process with key stakeholders, a survey instrument was developed with sections focusing on the provision of care at home, in the last nursing home / residential care facility, hospice and hospital, as well as care experience in the last 2 days of life, the relative's experiences of care and support, the circumstances of care surrounding death and demographic information. In total, a bank of 123 questions were prioritised to be included in the National End of Life Survey instrument. CONCLUSION: The survey will provide a standardised national approach to capturing the experience of care of those who have died, from the perspective of bereaved relatives in the Republic of Ireland. This will allow health service providers, policy makers and regulators to gather important insights into the experiences of care at end of life and will help fulfil the requirement of healthcare services to ensure they are providing high-quality care.

Women's experiences of initiating feeding shortly after birth in Ireland: A secondary analysis of quantitative and qualitative data from the National Maternity Experience Survey.

OBJECTIVE: To explore women's experiences of initiating and continuing breast or formula feeding shortly after birth in Ireland's maternity hospitals and units, as well as at home after birth. DESIGN: Mixed methods secondary analysis of qualitative and quantitative data from the Irish National Maternity Experience Survey 2020. SETTING: All 19 maternity hospitals and units in the Republic of Ireland and the national home births service. Women were asked about their maternity care experiences, including antenatal care, care during labour and birth, feeding, and care at home after birth. PARTICIPANTS: A total of 3,205 women who gave birth in October or November 2019 participated in the study (50% response rate). MEASUREMENTS: Free-text comments related to women's experiences of initiating and continuing breast or formula feeding were analysed using thematic analysis. Quantitative data were described using means (SD) and frequencies and percentages. FINDINGS: In the first few days after birth, 41.9% of women breastfed exclusively, 29.0% used formula and breast milk, and 29.1% bottle-fed only. Seven-hundred and twenty women (22.5%) made 824 comments related to feeding. Four themes were identified: (1) support and encouragement from healthcare professionals, (2) information and advice regarding feeding, (3) Pressure to feed in a particular way and (lack of) respect for personal preferences, and (4) hospital environment and resources. KEY CONCLUSIONS: Some women experienced a lack of support with feeding their babies, regardless of feeding method. Clear and concise information on feeding practices and home supports could help to support mothers with breast or formula feeding. IMPLICATIONS FOR PRACTICE: It is important that healthcare professionals provide evidence-based information and support, while respecting women's choices. Lactation consultants could offer training and consistent information to healthcare professionals as well as providing specialist support to mothers who experience problems with breastfeeding during their hospital stay and in the postnatal period.