Examining the value of using naturally occurring data to facilitate qualitative health research with ‘seldom heard’ ‘vulnerable’ groups: A research note on inpatient care

2021 ◽  
pp. 146879412110399
Author(s):  
Alison Drewett ◽  
Michelle O’Reilly

This research note explores two inter-connected ideas. First, that the category of ‘vulnerable’ groups has expanded and has sometimes been used to exclude seldom heard groups from research. The underpinning protectionist polemic, whilst well-intended, has arguably led to disempowerment of the very groups they intended to safeguard. Learning lessons from advances in research with children can be utilised to develop a more inclusive and empowering approach with adults while simultaneously addressing safeguarding. Second, the note values the potential of using naturally occurring data as a mechanism for including vulnerable groups in research. An example is offered attending to frequently excluded inpatient voices in healthcare studies. The practical and ethical benefits of using naturally occurring data are explored for countering arguments against the inclusion of vulnerable groups using an example of autistic inpatient research from the UNITE study. Researchers are invited to make practical adjustments to maximise involvement opportunities, and a reminder that capacity to take part in research activity may be facilitated by these modifications. Naturally occurring data offer the possibility of understanding complex hospital practices without additional burdens of researcher-generated methods.

2020 ◽  
Vol 19 ◽  
pp. 160940692095859
Author(s):  
Grace Spencer ◽  
Hannah Fairbrother ◽  
Jill Thompson

The widespread privileging of children’s voices in recent times has triggered expansion of differing forms of qualitative enquiry that aim to “give children a voice.” Engaging children in research and eliciting their voices on matters that affect them is often showcased as being a more “authentic” way to capture children’s lived realities and afford their agency. Yet, the uptake of voice in qualitative enquiry, and how it may contribute to the privileging of particular ways of knowing (some) children’s lives, is rarely interrogated. Drawing on examples from our own research, in this paper we critically reflect on the frequent invoking of the term voice in qualitative health research with children. In doing so, we challenge claims of authenticity by exposing the tricky epistemological tensions and relations of power that are embedded within the production and legitimation of particular voices as being “correct” ways of knowing about health—including the ways our research intentions and methods contribute to these processes. We reflect on the methodological and epistemological value of silences, dissenting voices and other modes of expression to highlight forms of resistance to adult-led health agendas. We conclude by illustrating how dominant relations of power are (re)produced within and across research spaces, and through the mobilizing or pathologizing of particular young voices through research. Possibilities for advancing ways to harness children’s preferred modes of expression in qualitative research are also considered.


1996 ◽  
Vol 10 (2) ◽  
pp. 155-164 ◽  
Author(s):  
Lorraine Ireland ◽  
Immy Holloway

2020 ◽  
Vol 30 (Supplement_5) ◽  
Author(s):  
◽  

Abstract Patient information material (PIM) is omnipresent in healthcare. It is used to convey information or to familiarize potential end-users to offers of support. PIM recaps or elaborates on relevant information and offers recommendation for action. However, the quality of available PIM varies. When the formal and content-related quality of PIM is suboptimal, it not only fails to be effective but can also lead to uncertainty, misunderstandings, resistance or ignorance (e.g. of a support offer). Highly complex information requires much attention on the quality of the PIM, especially with respect to end-users (e.g. vulnerable groups). Excellent communication through the use of PIM is thus essential within complex interventions. Checklists, such as 'Discern' or 'PEMAT', as well as criteria catalogues or evidence-based patient information standards, may assist in the development, quality assessment and optimization of PIM. The inclusion of the end-users is recommended but for various reasons does not often take place. The innovative “integrated, cross-sectional Psycho-Oncology” (isPO) programme, offers needs-driven, professional support to all adult, newly diagnosed cancer patients early in their sickness trajectory. IsPO was developed in 2018. It was implemented and a formative evaluated in 2019. When developing this programme, different PIM were created top-down by the programme designers. During implementation, it became evident that these PIM materials required further improvement. A testing and optimization process started using the participatory health research (PHR) approach and was completed in a five-month period. A PIM-optimisation team was founded, which included the project partners involved in the network support, self-help organisations and the external evaluation institute. A practical instrument (PIM-checklist) for optimising the isPO-PIM was designed, piloted and used for testing by end-users, isPO service providers, and experts. Based on the recommendations in the checklist, the material was revised accordingly. Additionally, the PIM was completed with the design of two new components. Four optimisation rounds were conducted. The optimized PIM was tested on its comprehensibility (for end-users) and its usability (for service providers). During the presentations, the audience is invited to comment on critical questions that may appear during optimization (e.g. timing). Afterwards, there will be a skill building part with a focus on collaborative learning (45 minutes). First, we will focus on the requirements for a practical instrument that is handy for end-users, service providers and experts (mind mapping exercise). Finally, participants will be able to explore the following topics “World Café” discussion: (1) how to plan, conduct and communicate the development of optimization of PIM in a CI program, (2) what needs to be considered for the optimization (e.g. team composition, resources), and (3) how to continuously achieve end-userś participation. Key messages Excellent PIM are essential for a complex interventiońs success in practice and must include information and foster actionability. the iterative PIM design processes benefits from high user participation.


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