Background: Perinatal loss is a devastating occurrence for expecting parents. Although both parents are affected, research on fathers' grief has not resulted in effective support services for fathers.
Aim: To describe a multi-stage co-design process for developing text messaging support for fathers experiencing perinatal loss.
Methods: Co-designed text messages were developed in collaboration with a perinatal bereavement organisation, mothers and fathers with lived experience of perinatal loss, and clinicians working with bereaved parents. Bereaved parents responded to a survey about bereaved fathers' information needs (stage 1). A qualitative descriptive data analysis created topics for the generation of text messages (stage 2). Parents with lived experience and clinicians evaluated the messages on importance and clinical fit (stage 3). Messages were revised (stage 4), followed by parent and clinician evaluation and final message revision (stage 5).
Findings: There were 959 survey respondents; the majority agreed that support for fathers would have been useful; 539 provided comments. Qualitative analysis created twelve topics within three themes, leading to the generation of 64 text messages. Messages were evaluated by 27 lived experience parents and 19 clinicians as important (91.6%) and understandable (91.3%), and 92.5% of clinicians agreed the messages fitted clinical guidelines. Message revision resulted in 59 messages across three themes. The final evaluation by 12 parents and 14 clinicians led to a final revised set of 52 messages.
Conclusion: Text-based support for bereaved fathers can be developed in a co-design process to accord with clinical practice, from topics suggested parents with lived experience.
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http://dx.doi.org/10.1016/j.wombi.2024.101594 | DOI Listing |
Background: Patient advisory groups are key to guiding research studies through meaningful engagement with the population of interest. Although patient advisory groups are greatly valuable to research studies, they are underutilized in inflammatory bowel disease research. Thus, this study aims to describe the development and implementation of a patient advisory group and evaluate the perspectives of researchers and members.
View Article and Find Full Text PDFFront Public Health
January 2025
Department of International Health, Center for Indigenous Health, Johns Hopkins Bloomberg School of Public Health, Baltimore, MD, United States.
Introduction: Indigenous connectedness is an impetus for health, well-being, self-confidence, cultural preservation, and communal thriving. When this connectedness is disrupted, the beliefs, values, and ways of life that weave Indigenous communities together is threatened. In the Spring of 2020, the COVID-19 virus crept into Tribal Nations across the United States and exacerbated significant health-related and educational inequities.
View Article and Find Full Text PDFFront Public Health
January 2025
Department of Paediatrics, Yong Loo Lin School of Medicine, National University of Singapore, Singapore, Singapore.
Introduction: The incidence of pediatric tracheostomy is on the rise. More children are undergoing tracheostomy at a younger age and living longer and cared for at home. Caring for children with tracheostomy affects the caregivers' Quality of Life (QOL) and caregiver burden.
View Article and Find Full Text PDFJ Migr Health
December 2024
Department of Nursing, The Hague University of Applied Sciences, The Hague, the Netherlands.
As migrant populations age, the care system is confronted with the question how to respond to care needs of an increasingly diverse population of older adults. We used qualitative intersectional analysis to examine differential preferences and experiences with care at the end of life of twenty-five patients and their relatives from Suriname, Morocco and Turkey living in The Netherlands. Our analysis focused on the question how - in light of impairment - ethnicity, religion and gender intersect to create differences in social position that shape preferences and experiences related to three main themes: place of care at the end of life; discussing prognosis, advance care, and end-of-life care; and, end-of-life decision-making.
View Article and Find Full Text PDFGates Open Res
January 2025
International Treatment Preparedness Coalition, Johannesburg, 2196, South Africa.
Background: The COVID-19 pandemic in Malawi exacerbated, existing public health challenges including access to HIV treatment and care services. "Life Mapping," a component of the Citizen Science community-led project in Malawi, documented the lived experiences and perspectives of people living with HIV in the context of COVID-19.
Methods: Citizen Science Life Maps is a three-year qualitative, longitudinal project utilizing collaborative and participatory research methods through digital storytelling to document peoples' daily lives.
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