ObjectiveTo obtain insights into parents' information needs during the first year at home with their very preterm (VP) born infant.MethodsWe conducted semi-structured interviews with parents of VP infants participating in a post-discharge responsive parenting intervention (TOP program). Online interviews were audiotaped and transcribed verbatim. Inductive thematic analysis was performed by two independent coders.ResultsTen participants were interviewed and had various and changing information needs during the developmental trajectory of their infant. Three main themes emerged; (1) Help me understand and cope, (2) Be fully responsible for my baby, and (3) Teach me to do it myself. Available and used sources, such as the Internet, did not meet their information needs. Participants preferred their available and knowledgeable healthcare professionals for reassurance, tailored information, and practical guidance.ConclusionThis study identified parents' information needs during the first year at home with their VP infant and uncovered underlying re-appearing needs to gain confidence in child-caring abilities and autonomy in decision-making about their infants' care.InnovationThis study provides valuable information for healthcare professionals and eHealth developers to support parental self-efficacy during the first year after preterm birth.
Introduction: In March 2014, the New South Wales (NSW) Government (Australia) announced the NSW Integrated Care Strategy. In response, a family-centred, population-based, integrated care initiative for vulnerable families and their children in Sydney, Australia was developed. The initiative was called Healthy Homes and Neighbourhoods. A realist translational social epidemiology programme of research and collaborative design is at the foundation of its evaluation. Theory and Method: The UK Medical Research Council (MRC) Framework for evaluating complex health interventions was adapted. This has four components, namely 1) development, 2) feasibility/piloting, 3) evaluation and 4) implementation. We adapted the Framework to include: critical realist, theory driven, and continuous improvement approaches. The modified Framework underpins this research and evaluation protocol for Healthy Homes and Neighbourhoods. Discussion: The NSW Health Monitoring and Evaluation Framework did not make provisions for assessment of the programme layers of context, or the effect of programme mechanism at each level. We therefore developed a multilevel approach that uses mixed-method research to examine not only outcomes, but also what is working for whom and why.
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The unexpected death of a child is one of the most challenging losses as it fractures survivors’ sense of parenthood and other layers of identity. Given that not all the bereaved parents who have need for support respond well to available treatments and that many have little access to further intervention or follow-up over time, online interventions featuring therapeutic writing and peer support have strong potential. In this article we explore how a group of bereaved mothers experienced the process of participating in an online course in therapeutic writing for the integration of grief. Our research questions were: How do parents who have lost a child experience being part of an online course in therapeutic writing? What are the perceived benefits and challenges of writing in processing their grief? We followed an existential phenomenological approach and analyzed fieldwork notes (n = 13), qualitative data from the application and assessment surveys (n = 35; n = 21), excerpts from the journals of some participants (n = 3), and email correspondence with some participants (n = 5). We categorized the results in three meaning units: (1) where does my story begin? The “both and” of their silent chaos; (2) standing on the middle line: a pregnancy that does not end; (3) closures and openings: “careful optimism” and the need for community support. Participants experienced writing as an opportunity for self-exploration regarding their identities and their emotional world, as well as a means to develop and strengthen a bond with their children. They also experienced a sense of belonging, validation, and acceptance in the online group in a way that helped them make sense of their suffering. Online writing courses could be of benefit for bereaved parents who are grieving the unexpected death of a child, but do not replace other interventions such as psychotherapy. In addition to trauma and attachment informed models of grief, identity informed models with a developmental focus might enhance the impact of both low-threshold community interventions and more intensive clinical ones. Further studies and theoretical development in the area are needed, addressing dialogical notions such as the multivoicedness of the self. Lehmann OV, Neimeyer RA, Thimm J, Hjeltnes A, Lengelle R and Kalstad TG (2022) Experiences of Norwegian Mothers Attending an Online Course of Therapeutic Writing Following the Unexpected Death of a Child. Front. Psychol. 12:809848. doi: 10.3389/fpsyg.2021.809848