Dr Teresa M D Finlay

Background

Ecomaps are tools used in nursing practice to assess families’ social support systems. Whilst ecomaps have previously been used effectively within qualitative research, little attention has been given to them as a tool within the methodological approach of hermeneutic phenomenology.

Aim

To demonstrate that the use of ecomaps is congruent with the Heideggerian philosophical foundations associated with hermeneutic phenomenology. This paper demonstrates how ecomaps can illuminate nurses’ understanding about the experiences of patients and families by reflecting on a study where ecomaps were used to explore how parents of children with cancer are supported with decision-making about their child’s care.

Discussion

Exploration of the Heideggerian concepts of ‘being-in-the-world’, ‘being-with’, and ‘temporality’ prompted reflections about how constructing ecomaps furthers understanding about participants’ unique contexts. Using an ecomap within an in-depth interview enabled participants to return to their experiences of being supported with decision-making, and further developed the researcher’s understanding about how each participant’s experience was situated within their evolving relationships with others.

Conclusion

Constructing ecomaps within hermeneutic phenomenology is in tune with Heideggerian philosophical concepts. Ecomaps can open a door to participants’ experiences and, combined with understanding of philosophical concepts, deepen the researcher’s understanding and find further meaning in participants’ experiences.

Implications for practice

Ecomaps are a useful tool in shining a light on the lifeworld of research participants in hermeneutic phenomenological research. Practical tips are provided to optimise their use in future research.

Aim: To synthesise what is known from current international evidence about how parents are supported by significant others when they are faced with making decisions about their child's cancer care.

Background: Parents are faced with making challenging decisions when their child has cancer and may benefit from support. Whilst previous research has comprehensively explored how healthcare professionals can offer support, little attention has been given to how support may be informally provided from a parent's network of significant others.

Method: An integrative literature review was undertaken and reported following the ENTREQ framework. Literature was identified from comprehensive database searching across four relevant databases (CINAHL, PubMed, PsychINFO and British Nursing Database) and hand-searching reference lists of retrieved studies. Studies that met the inclusion criteria were critically appraised and then analysed using the Constant Comparative Analysis method.

Results: Twenty-six articles were included in the review. Two overarching themes were iden-tified. Theme 1— Dimensions of Decision- Making support— included three sub-themes: informational, emotional and instrumental mechanisms of support. Theme 2— Expectations of Decision- Making support— identified that parents’ expectations of their own role, and the role of their significant others, affected how decision-making was supported.

Conclusions: Parents may seek and receive support from various significant members of their network, but there is a fine line between supportive and unsupportive behaviours.

Relevance to clinical practice: Each family's unique personal, social and cultural context strongly impacts on their support needs, and nurses and other healthcare professionals should be mindful of how parents may access support from their significant others. Further in-depth research around this area would contribute important knowledge around parents’ support needs.

Population-level biomedical research offers new opportunities to improve population health, but also raises new challenges to traditional systems of research governance and ethical oversight. Partly in response to these challenges, various models of public involvement in research are being introduced. Yet, the ways in which public involvement should meet governance challenges are not well understood. We conducted a qualitative study with 36 experts and stakeholders using the World Café method to identify key governance challenges and explore how public involvement can meet these challenges. This brief report discusses four cross-cutting themes from the study: the need to move beyond individual consent; issues in benefit and data sharing; the challenge of delineating and understanding publics; and the goal of clarifying justifications for public involvement. The report aims to provide a starting point for making sense of the relationship between public involvement and the governance of population-level biomedical research, showing connections, potential solutions and issues arising at their intersection. We suggest that, in population-level biomedical research, there is a pressing need for a shift away from conventional governance frameworks focused on the individual and towards a focus on collectives, as well as to foreground ethical issues around social justice and develop ways to address cultural diversity, value pluralism and competing stakeholder interests. There are many unresolved questions around how this shift could be realised, but these unresolved questions should form the basis for developing justificatory accounts and frameworks for suitable collective models of public involvement in population-level biomedical research governance.

Background: showing how engagement adds value for all stakeholders can be an effective motivator for broader implementation of patient engagement. However, it is unclear what methods can best be used to evaluate patient engagement. This paper is focused on ways to evaluate patient engagement at three decision-making points in the medicines research and development process: research priority-setting, clinical trial design and early dialogues with regulators and health technology assessment bodies.

Objective: our aim was to review the literature on monitoring and evaluation of patient engagement,  with a focus on indicators and methods.

Search strategy and inclusion criteria: we undertook a scoping literature review using a systematic search, including academic and grey literature with a focus on evaluation approaches or outcomes associated with patient engagement. No date limits were applied other than a cut-off of publications after July 2018.

Data extraction and synthesis: data were extracted from 91 publications, coded and thematically analysed.

Main results: a total of 18 benefits and 5 costs of patient engagement were identified, mapped with 28 possible indicators for their evaluation. Several quantitative and qualitative methods were found for evaluation of benefits and costs of patient engagement.

Discussion and conclusions: currently available indicators and methods are of some use in measuring impact but are not sufficient to understand the pathway to impact, nor whether interaction between researchers and patients leads to change. We suggest that the impacts of patient engagement can best be determined not by applying single indicators, but a coherent set of measures.

Background: Numerous frameworks for supporting, evaluating and reporting patient and public involvement in research exist. The literature is diverse and theoretically heterogeneous. Objectives: To identify and synthesize published frameworks, consider whether and how these have been used, and apply design principles to improve usability. Search strategy: Keyword search of six databases; hand search of eight journals; ancestry and snowball search; requests to experts. Inclusion criteria: Published, systematic approaches (frameworks) designed to support, evaluate or report on patient or public involvement in health‐related research. Data extraction and synthesis: Data were extracted on provenance; collaborators and sponsors; theoretical basis; lay input; intended user(s) and use(s); topics covered; examples of use; critiques; and updates. We used the Canadian Centre for Excellence on Partnerships with Patients and Public (CEPPP) evaluation tool and hermeneutic methodology to grade and synthesize the frameworks. In five co‐design workshops, we tested evidence‐based resources based on the review findings. Results: Our final data set consisted of 65 frameworks, most of which scored highly on the CEPPP tool. They had different provenances, intended purposes, strengths and limitations. We grouped them into five categories: power‐focused; priority‐setting; study‐focused; report‐focused; and partnership‐focused. Frameworks were used mainly by the groups who developed them. The empirical component of our study generated a structured format and evidence‐based facilitator notes for a “build your own framework” co‐design workshop. Conclusion: The plethora of frameworks combined with evidence of limited transferability suggests that a single, off‐the‐shelf framework may be less useful than a menu of evidence‐based resources which stakeholders can use to co‐design their own frameworks.

Objective. The purpose of this study was to explore whether patients with musculoskeletal conditions would agree to use digital technologies to learn about research registries and make a decision about signing up whilst in the clinic waiting room. Methods. Patients were recruited from four hospital clinics across Oxfordshire. We used an explanatory mixed methods design with two sequential phases comprising an exploratory, cross-sectional questionnaire (n = 84), followed by focus group interviews (n = 8) to provide context for the findings from the questionnaire. Multivariate ordinal logistic regression models were used to explore relationships between patient preferences and characteristics. Thematic analysis was used to understand the reasons for patient preferences regarding digital technologies and research registries. Results. As participants' age increased, they were more likely to report a preference for face-to-face recruitment methods compared to those using digital technologies. Findings from the focus groups indicated this was primarily due to a fear of technology and physical limitations associated with a patient's condition. Patients also reported a preference for making a decision about signing up at a later date, which was attributed to patients feeling distracted whilst in the waiting room due to anxieties related to their upcoming appointment. Conclusions. Many patients with musculoskeletal conditions in the UK may be interested in learning about opportunities to participate in research whilst using digital technologies within the waiting room. The results suggest the need for choice regarding the presentation and format of information and whether it can be accessed at a later date at home.

Background. Significant advances in digital technologies have meant that health care data can be collected, stored, transferred, and analyzed for research purposes more easily than ever before. Participant-centric initiatives (PCI) are defined as “tools, programs, and projects that empower participants to engage in the research process” using digital technologies and have the potential to provide a number of benefits to both participants and researchers, including the promotion of public trust in medical research, improved quality of research, increased recruitment and retention, and improved health care delivery.

Objective. The main objective of this scoping review is to describe the extent and range of PCIs across the United Kingdom, United States, and Japan that are designed to facilitate medical research.

Methods. The methodological framework described by Levac et al will be applied to this scoping review. We will search electronic databases (MEDLINE, EMBASE, PsychINFO, Cumulative Index to Nursing, and Allied Health Literature and CiNii), grey literature sources, Internet search engines (Google and Bing), and hand search key journals and reference lists of relevant articles. All digital tools and programs will be eligible for inclusion if there is a description of key features and functions that fall within the parameters of a PCI. Only those that play a role in medical research will be included.

Results. Preliminary searches conducted in MEDLINE and EMBASE retrieved 1820 and 2322 results, respectively. The scoping review will be completed by January 2018.

Conclusions. The scoping review will be the first to map the extent and range of PCIs currently available across the United Kingdom, United States, and Japan, and will be the first review to contribute to a better understanding of what PCIs patients may benefit from. Researchers and practitioners will be able to use information in this review as a guide for patients and also as a guide for the development of future tools and programs. The results will be disseminated through a peer-reviewed publication and conference presentations.

Background. In the UK children with cancer are cared for by children's nurses in a variety of settings, specialist and non-specialist. Whilst post-registration specialist education is available to some nurses, many nurses rely solely on pre-registration education to competently care for these children. This study explores whether nurses perceive that this adequately prepares them. Objectives. To explore the extent to which qualified nurses perceive that pre-registration nurse education prepares them to care for children with cancer; to consider the implications for children's nursing pre-registration curricula. Design. A small-scale qualitative study was undertaken using an interpretivist approach. Methods. Semi-structured interviews were conducted with six qualified children's nurses in two clinical areas - a specialist children's cancer inpatient ward, and a general children's ward where inpatients included children with cancer. Results. Findings are discussed in relation to three emergent themes: Learning in Theory and Practice, Care of the Child and Family, and Resilience. Participants attached significance to the quantity and quality of practice experience. They reflected on barriers to specific and transferable theoretical learning and stressed the importance of integrating theory and practice. Understanding of family-centred care formed a significant part of their preparation. Preconceptions, communication with families and the emotional impact of this speciality were stressful. Improved pre-registration preparation may have developed participants' resilience. Conclusion. The complexities of caring for children with cancer and their families require well-prepared nurses. Participants' perceptions of preparedness were influenced by aspects of pre-registration education. Their experiences suggest that curricula should be practice-focused and include a range of placements. Specialist theoretical content must be integrated with practice and transferability of knowledge and skills made explicit. Reflection and problem-based learning may foster coping mechanisms and resilience that will equip them to care for children with cancer.

This study examines direct-to-consumer genetic testing (DTCGT) in the UK using the Social Construction of Technology framework to draw conclusions about how commercial genotyping is being shaped by principal groups involved with the technology. Different tests are available including single nucleotide polymorphism genotyping for ancestry and health information, the latter being the focus of this study. I conducted interviews with DTCGT users, and genetics clinicians who had either been consulted about DTCGT or who were willing to discuss their views. This paper is about one of the study’s three themes, the NHS. DTCGT seemed to provide a point of focus for conflict between personalized and collective medicine in the UK, rather than being its cause. This suggests that DTCGT is more likely to achieve stability by virtue of being superseded by new technologies, rather than by achieving closure.

Objectives. To explore the extent to which qualified nurses perceive that pre-registration nurse education prepares them to care for children with cancer; to consider the implications for children’s nursing pre-registration curricula.

Design. A small-scale qualitative study was undertaken using an interpretivist approach.

Methods. Semi-structured interviews were conducted with six qualified children’s nurses in two clinical areas - a specialist children’s cancer inpatient ward, and a general children’s ward where inpatients included children with cancer.

Results. Findings are discussed in relation to three emergent themes: Learning in Theory and Practice, Care of the Child and Family, and Resilience. Participants attached significance to the quantity and quality of practice experience. They reflected on barriers to specific and transferable theoretical learning and stressed the importance of integrating theory and practice. Understanding of family-centred care formed a significant part of their preparation. Preconceptions, communication with families and the emotional impact of this speciality were stressful. Improved pre-registration preparation may have developed participants’ resilience.

Conclusion. The complexities of caring for children with cancer and their families require well-prepared nurses. Participants’ perceptions of preparedness were influenced by aspects of pre-registration education. Their experiences suggest that curricula should be practice-focused and include a range of placements. Specialist theoretical content must be integrated with practice and transferability of knowledge and skills made explicit. Reflection and problem-based learning may foster coping mechanisms and resilience that will equip them to care for children with cancer.