BMJ Open

Brooks, CF; Matheson-Monnet, CB; Argyropoulos, A

doi: 10.1136/bmjopen-2019-QHRN.66pmid: N/A

BackgroundSocial media platforms occupy an increasingly significant role in providing learning and support for people to share healthcare experiences,1 yet little is known about their potential as participant recruitment avenues into health research.2 AimTo develop understanding of the role of social media as a recruitment tool, this paper presents conceptual and methodological insights, as well as early findings from a study using social media alongside traditional recruitment pathways,1 to explore patient, General Practitioner and Pharmacist experiences of the local implementation of a national led digital technology.MethodsUsing a combined recruitment strategy comprising of social media and traditional recruitment pathways, patients, General Practitioners and Pharmacists are being recruited into a mixed method study, involving online surveys and telephone interviews, to explore their experiences of the local implementation of a national led digital technology.ResultsKey insights include:Methodological design, development and implementation of a social media recruitment toolBarriers and enablers of using social media in comparison to traditional recruitment pathwaysComplexities of context: using a recruitment tool with an international reach to recruit locallyEarly exploratory findings and relationship to recruitment strategyEngagement and participation of different social media users: patients, General Practitioners and PharmacistsImplications for future research using social media as a recruitment tool.ConclusionsKey insights can contribute towards learning about the use of social media as a recruitment tool in health research involving digital technologies and consideration of complex interrelated methodological, contextual, relational, ethical and participation issues.ReferenceLupton D. ‘It just gives me a bit of peace of mind’: Australian Women’s use of digital media for pregnancy and early motherhood. Societies2017;7:25.Arigo D, Pagoto S, Carter-Harris L, et al. Using social media for health research: Methodological and ethical considerations for recruitment and intervention delivery. Digital Health 2018;4:2055207618771757.

Ledger, Jean; Mehta, Raj; Jasim, Sarah; Aspinal, Fiona; Barratt, Helen

doi: 10.1136/bmjopen-2019-QHRN.12pmid: N/A

BackgroundConventionally, focus groups are facilitated by academic researchers who mediate discussions with public participants. The researchers consider in advance group composition, topic guides and within-group dynamics.As part of a mixed methods evaluation of a health care improvement programme, we co-produced a series of focus groups with a patient representative.AimTo critically reflect on the process of developing and undertaking focus groups in partnership with patient representatives, and make recommendations for others considering using a similar approach in health research.MethodsFocus group materials were co-designed with a patient representative and piloted with a patient and public advisory panel. We conducted three focus groups with individuals who had undergone surgery in the last two years (surgical groups) and individuals who had not (non-surgical group). Each group was co-facilitated with the patient representative who later contributed to discussions to interpret the findings.ResultsCo-production during planning stages provided a unique patient perspective about how to communicate information to the public and emphasise the patient perspective. We re-framed the topic guide to acknowledge that the patient journey is experienced along a continuum, not bounded by time or contact points with care providers. Co-facilitation of the groups enabled transparency, legitimacy and balance of contribution across academic and lay representatives. Rather than following convention and leading a focus group, researchers’ roles shifted and they became co-facilitators. Focus groups benefitted from instances where the patient representative usefully sought to extend discussions and pursue emergent topics, where academic members might have tacitly sought to stick to the topic guide and keep discussions within the remit of the study objectives.ConclusionWe suggest that this process of co-production, when instituted as part of a critically reflective team approach, democratised the research process and supported stronger engagement within the groups themselves.

Martins, Ana; Bennister, Lindsey; Fern, Lorna; Gerrand, Craig; Onasanya, Maria; Storey, Lesley; Wells, Mary; Woodford, Julie; Windsor, Rachael; Whelan, Jeremy; Taylor, Rachel

doi: 10.1136/bmjopen-2019-QHRN.56pmid: N/A

BackgroundTreatment of sarcoma often involves long-term hospitalisation, extensive surgery, loss of mobility, complex rehabilitation programmes, and is in many cases accompanied by low expectations of survival. Subsequently, poorer patient-reported outcomes are recorded in comparison to patients with other cancer types. Studies examining psychosocial functioning of those affected by sarcoma are needed to improve wellbeing.AimThis study aims to explore the experiences of adolescents and young adults (AYA) with sarcoma.MethodsA total of 35 AYA diagnosed with soft-tissue and bone sarcoma (19 female) aged 13–39 years old (M=28.8; SD=6.7) participated in semi-structured telephone/face-to-face interviews (25 diagnosed within the previous 4 years; 4 had an amputation). Interviews were recorded and transcribed verbatim and analysed using Framework analysis.ResultsThe quality of life domains of physical, emotional and social wellbeing were the overarching themes of analysis. In addition to descriptions of the impact of sarcoma on these domains, results showed three influencing factors of AYA experience: healthcare professionals’ role; social support and coping strategies. AYA described experiences of being reassured and receiving information at the right level from professionals. Healthcare professionals’ expertise and accessibility was valued by AYA. Family, friends and interactions with peers with cancer were core elements of support. Adaptation after diagnosis, treatment and/or surgery was influenced by the way AYA dealt with stress and adversity, with some struggling with finding their ‘new normal’. Rehabilitation and therapy/counselling services had a considerable role in AYA’s physical and emotional wellbeing; however access to these services was not equitable.ConclusionsA sarcoma diagnosis disrupts normality and initiates a process of re-examining expectations for self, daily life, and future hopes and plans. This study shows the impact of sarcoma on AYA’s wellbeing and identity development; protective/risk factors identified could guide future support interventions for AYA with sarcoma.

Fox, Jackie; Erlandsson, Lena-Karin; Shiel, Agnes

doi: 10.1136/bmjopen-2019-QHRN.60pmid: N/A

BackgroundAnxiety and stress are prevalent in general practice and primary care settings, particularly among women. The ‘Redesigning Daily Occupations’ (ReDO) programme is a manualised occupational therapy-led intervention designed to improve balance in daily life and reduce stress. A pilot study aiming to explore the feasibility of implementing ReDO in primary care settings was carried out. Despite predicted demand, recruitment was slower than anticipated.ObjectivesTo understand the feasibility and acceptability of ReDO from the perspective of stakeholders.To understand the study processes better.To use this information in decision–making to plan future intervention evaluation/development.MethodsSix women diagnosed with anxiety or stress-related conditions were recruited to take part in the 10 week group programme via their general practitioner. Qualitative interviews were completed with five group participants, two group facilitators, and nine general practitioners (n=17). The data analysis was informed by principles of qualitative evaluation research where the focus is on achieving practical, actionable understandings of real-world issues in context.1 ResultsResults demonstrated conflicting perspectives on the feasibility of ReDO. The participants noted changes in their daily lives in mental health and daily functioning and recommended longer interventions. In contrast, the length of the intervention was balanced with a heavy clinical workload for the occupational therapists, while general practitioners felt the length of the programme restricted study recruitment. The occupational therapy programme facilitators and participants contributed to understanding how changes had taken place within the context of group dynamics adding to insight into who the intervention might best be suited to.ConclusionsThe qualitative approach contributed greatly to decision-making. The programme will be delivered again in 2019 with small changes to the inclusion/exclusion criteria and recruitment strategy. Future research will explore the mechanism of change as understood by participants and facilitators within this intervention.ReferencePatton M. Qualitative research and evaluation methods: Integrating theory and practice (4th Edition), 2015. Thousand Oaks, CA: SAGE Publications, Inc.

Marilia Ignacio De Espindola, Bachelor; Silva, Eroy; Bonadio, Alessandra; Regina Noto, Ana

doi: 10.1136/bmjopen-2019-QHRN.67pmid: N/A

BackgroundTo underlie new practices towards health promotion and well-being for homeless people and drug users, it is necessary to broaden the focus to interpersonal relationships throughout their life cycle. The Community Treatment is an innovative approach, as it proposes a change in perspective. Few studies have highlighted the process of human development and interpersonal relationships as a resource for new health practices.ObjectivesTo understand how interpersonal relationships and substance use are modified throughout the life cycle of homeless people in urban regions of São Paulo.MethodsThis study followed a qualitative methodology and took place in the biggest city of Brazil, São Paulo, in 2017/2018. Three approaches were used: participant observation, formal interviews with key informants (n=19) and homeless adults substance users (n=14) using the timeline technique, with a total sample of 33 participants. All interviews were audiotaped and observations were registered in field diaries. The audio files were full transcribed and submitted to content analysis. All procedures were aligned to COREQ (Consolidated Criteria for Reporting Qualitative Research) and SRQR (Standards for Reporting Qualitative Research) guidelines.ResultsFindings of the timeline technique and observational study show that the life cycle of homeless people and substance users are marked by several family bonds broken in two moments: childhood and adolescence. Living in the streets and drug use are connected with these broken ties. Themes related to LGBTT experiences appeared with considerable frequency and are also connected to these ruptures.ConclusionsTriangulation of data indicate that it is necessary to consider these broken bonds when creating new interventions for homeless drug users. The Community Treatment is an approach that considers all vulnerabilities found in the life cycle of this populations.

Alias, Emi; Gupta, Sandhya; Nehra, Ashima; Rewari, Vimi

doi: 10.1136/bmjopen-2019-QHRN.49pmid: N/A

BackgroundPatients on mechanical ventilator in ICU are subjected to various physical and emotional stressors which they may be unable to communicate causing further distress.ObjectiveTo describe the lived in experiences of critically ill patients who were on mechanical ventilation in medical-surgical ICU of a Tertiary care hospital in Delhi, India.MethodsThis Phenomenological hermeneutic study included patients above 18 years who were on mechanical ventilator for at least 48 hours in the medical-surgical ICU of a tertiary care hospital between August to November 2017 and fulfilling inclusion criteria. Ethical approval was obtained from institutional ethical committee. The data was collected using in-depth interview guide with six patients only out of the twelve enrolled (n=6 dropped out of study). Audio recorded interviews were transcribed and further analyzed by Van Manen’s approach.ResultsAll patients were on ventilator via Endotracheal tube and the duration of mechanical ventilation ranged from 48 hours and 15 min to 299 hours and 30 min, had no previous experience of ET intubation, mechanical ventilation or ICU stay and interviewed within three days after extubation. The analysis of verbatim revealed emergence of twenty themes and corresponding subthemes which were grouped under four fundamental existentials of human experience which are spatiality, corporeality, temporality and relationality. Most of the patients reported discomfort due to ET tube, problems due to suctioning, impaired communication, altered thirst, hunger and sleep-wake cycle. Two of the patients expressed that they felt more at ease and less embarrassed with staff of same gender. Even comforting words from relatives sometimes caused irritation to patients.ConclusionThere is a need for provision of routine mental health assessment of ICU patients by mental health professionals and interventions to minimize impact of traumatic experiences of patients who’re put on mechanical ventilation in order to promote healthy coping patterns.

Holten, Lianne

doi: 10.1136/bmjopen-2019-QHRN.7pmid: N/A

BackgroundIn the Netherlands, some women with high-risk pregnancies go against medical advice and protocol in their choice of place and mode of birth, and choose to birth outside the regular maternity care system with a ‘holistic’ midwife.AimTo explore the defining moments for women choosing home birth in high-risk pregnancies and to determine if there was a general pattern in their experiences.MethodsThe researchers in this study used a feminist approach informed by Critical Theory. The DESCARTE model (Carolan, Forbat, & Smith, 20161) was used in the design of this exploratory multiple case study. 10 cases were chosen based on 41 in depth interviews with Dutch women with a high-risk pregnancy who chose to birth at home against medical advice, their partners and their health care professionals (midwives and obstetricians). Within case (grounded theory) and cross-case analysis (based on propositions cf. Yin 20142) of the cases was performed. The focus was on the negotiation of care during conversations with health care professionals wherein women with a high-risk pregnancy expressed their wishes.ResultsTwo patterns emerged. The dominant one was a trajectory of trauma, self-education, concern about paternalism, and conflict during consultation leading to a negative choice for alternative/holistic care. Prior birth trauma often made consultations fraught with tension. The second pattern was a path of trust and positive choice for holistic care without conflict.ConclusionsFor women to perceive the hospital as safe again, professionals will need to work on building a trusting relationship using continuity of care, true shared decision making, and an alternative risk discourse. Preventing initial birth trauma is a prerequisite.ReferencesCarolan CM, Forbat L and Smith A. Developing the DESCARTE Model:The Design of Case Study Research in Health Care. Qualitative Health Research 2016; 26: 626-639. DOI: 10.1177/1049732315602488.Yin RK. Case study research: design and methods 5th ed. Thousand Oaks 2014.

Bussu, Sonia; Lalani, Mirza; Marshall, Martin; Pattison, Stephen

doi: 10.1136/bmjopen-2019-QHRN.13pmid: N/A

BackgroundThis paper contributes to the literature on ethics in participatory research by looking at the Researcher-in-Residence model and its application within health services research.ObjectivesThis paper looks at one model of participatory research, the Researcher-in-Residence. The model places the researcher as a member of the delivery team to enable knowledge mobilisation and knowledge coproduction. We draw on recent literature on the ethics of participatory research to develop a framework that can support analysis of the ethical issues as experienced by Researchers-in-Residence. We examine several ethical issues that the researchers had to address at different points of the research process and reflect on different coping and negotiation strategies.MethodsThe data that form the basis of this paper were collected iteratively as part of two different qualitative and participatory evaluations of integrated care in East London. Data for this paper consisted of the two researchers’ personal journals and field notes, including reflections from fieldwork and communication with the wider research team.Results and conclusionWe offer a critical reflection on how the four ethics principles of respect for autonomy, beneficence, non-maleficence, and justice often have different implications for researchers engaged in participatory research, particularly when examined in terms of the contrasting norms of procedural ethics and everyday ethics. In line with other literature on participatory research, we found the institutional ethics review process offered no guidance, as it forced us to jump through hoops to fit an iterative process into requirements developed with a sequential steps process in mind. The paper suggests that, whereas the requirements of ethics committees, based on an ethics of principle, at times fail to offer appropriate guidelines for this methodological approach, an ethics of caring based on relationships can offer a complementary framework to address some of the thorny challenges that emerge from everyday practice in „participatory research.

Ohlbrecht, Heike; Seltrecht, Astrid; Lange, Bianca; Jellen, Josephine

doi: 10.1136/bmjopen-2019-QHRN.38pmid: N/A

BackgroundQualitative health research was established comparatively late in Germany. The establishment was done differently in the various scientific disciplines (medicine, public health, psychology, sociology, and nursing).ObjectivesAfter an early blossoming of qualitative health research in the 1970s/1980s, it was not possible to establish a methodological discourse for qualitative health research of its own in Germany. With the establishment of health sciences and nursing science, qualitative research became increasingly recognized in the 1990s. However, the question arises to what extent qualitative research, especially reconstructive methods, can be further strengthened and established in times of mixed method research.MethodsFacing these challenges, a network for qualitative health research in Germany was founded. It provides a platform for methodological discussion and development to reinforce the establishment of qualitative health research in Germany. The network has also set itself the task of connecting to international research.ResultsThe aim of the network is to contribute to the strengthening of methodological competencies in the field of qualitative health research. The focus was on the following topics: the discussion of the fit of the research topic and the research method used, the theory embedding, the discussion of quality criteria, the disclosure of implementation problems and methodological criticism, the consideration of the reflexivity of the researcher. In terms of qualitative survey and evaluation methods, diversity is to be exploited more. In addition, socio-structural differences and regional differences in the „German research landscape itself will be considered.ConclusionThe presentation illustrates current challenges, perspectives and development lines for example of qualitative health research. In addition, a reflection on qualitative health research, its acceptance and methodological progress on international health care research is to be based on the results of international research.

Braun, Virginia; Moller, Naomi; Clarke, Victoria

doi: 10.1136/bmjopen-2019-QHRN.33pmid: N/A

BackgroundStory completion asks the participant to produce a story, in response to an open, sometimes ambiguous, scenario. As a method for qualitative research, it is relatively unknown. Yet the method has deep roots, with origins in psychotherapy practice (projective techniques, such as Rorschach) and (quantitative) developmental psychology research (such as the doll play story completion test); in those domains, it offers a method to access information inaccessible through self-report. As a qualitative method, story completion has usually been used to research the meaning-worlds people occupy, exploring everyday sense-making in relation to topics such as infidelity1 and health and weight loss.2 Aims/ObjectivesThis paper provides an overview and introduction to story completion as a qualitative technique for health research, including a brief signal of key design concerns. It demonstrates the exciting potential this method has for tapping collective sense-making, making git potentially very use for health researchers.Discussion/ConclusionsWe believe story completion has untapped, exciting potential for qualitative health research, offering something quite different to many of the more popular methods used (e.g. interviews, focus groups). Through highlighting conceptual and design considerations for story completion, this paper both introduces the method and sets the scene for the three empirical symposium papers that follow – each of which demonstrates the application of story completion within a different area of health (healthy eating; disability and physical activity; mental health in the workplace).ReferencesClarke V, Braun V, Wooles K. Thou shalt not covet another man? Exploring constructions of same-sex and different-sex infidelity using story completion. Journal of Community & Applied Social Psychology, 2015;25:153–166.Tischner I. (in press). Tomorrow is the start of the rest of their life – so who cares about health? Exploring constructions of weight-loss motivations and health using story completion. Qualitative Research in Psychology.