P7 Providing perinatal substance use services: a qualitative study in 5 acts

Background While pregnancy is an opportune time to intervene in problematic substance use, multiple barriers exist for women requiring these services. Perinatal substance use necessitates a complex coordination of healthcare and social services for the mother-child dyad. This coordination is further complicated by intersectional stigma. Qualitative methodologies can be instrumental for understanding these complexities and can benefit advocacy work by providing contextualized, narrative accounts to policy and decision-makers. Aim This presentation will describe how, in five separate acts, an academic-community collaborative study supported several local service provision initiatives over a six-year span. Methods The study employed a grounded theory design to understand how services are provided to pregnant women affected by substances. Data collection included interviews and focus groups with service providers as well as observations and informal conversations at community meetings, conferences and workshops around the topic area. Publicly available documents were also collected and reviewed. Situational analysis and research poetics were used to elucidate and crystalize the complexities of the data. Results Findings are presented in 5 acts that demonstrate how the researcher was able to engage with the community and allow findings to be applied in real time. In addition to developing a process model of service delivery (Act 1), the researcher: supported the development and implementation of an integrated reproductive health program (Act 2); tracked, documented, and evaluated a knowledge transfer intervention on maternal opioid use (Act 3), and helped design a county-wide demonstration project to improve service utilization for the population (Act 4). The fifth act outlines future directions for a full-scale dissemination study. Conclusions The community-engaged approach shaped the study’s emerging design, which then influenced subsequent program development and delivery. Qualitative methodologies, when combined with community-engaged approaches, can support the timely application of contextualized findings that are delivered through established relationships, using persuasive formats.

Background In their pursuit of healthcare, patients may utilise services from different sectors and have different motivations for the choices they make. The haredi, Ultra Orthodox, Jewish community is strongly motivated to obtain care that is consistent with their ethics and values, particularly concerning endof-life care. This is reflected in an increased degree of involvement in decisions concerning treatment and place of care. Aims To investigate the perspectives of haredi Jews professionally involved in end-of-life care for community members, and of healthcare practitioners providing end-of-life care to haredi patients. To ascertain the patterns of service use and how these are navigated by patients and healthcare practitioners. Methods Semi-structured interviews with 14 haredi Jews and 16 healthcare practitioners. Transcripts were analysed qualitatively using Frameworks analysis. Results Haredi patients and families made tactical use of services across NHS, voluntary and private sectors, and services run by the haredi community. These were used both sequentially and concurrently, to pursue treatment or to obtain further opinions. Community advocates played a significant role in advising patients and families. Healthcare practitioners reported that a move away from NHS or voluntary sector was often the result of entrenched and unresolved conflict, where a treatment requested by patient and family was refused. A complex pattern of care was reported that could be confusing, unpredictable and difficult to navigate. Challenges to communication and care provision resulted. Healthcare practitioners perceived that the choices made were not always in the patient's best interests. Conclusions Service use by the haredi community is unlike that in other patient groups. It is motivated by the strong desire to obtain care perceived to be in accordance with haredi ethics and values concerning the end of life and is facilitated by a high level of community organisation. Conflict both prompted and emerged from the decisions made by patients and families. Background Loss of limb presents a significant, life changing, circumstance for individuals. The prosthetist, in a role of facilitating rehabilitation, is essential to positive adjustment post-amputation. As yet, however, commonalities and differences in the understandings of each of these parties of the experience of limb loss, prosthesis use and rehabilitation remain widely unexamined. This comparison provides the focus for this study. Aim To explore areas of shared and discrepant understanding of the experience of limb loss and prosthesis use from the patient and practitioner perspective. Method: 15 post-amputation individuals and 13 prosthetists were interviewed on their perceptions of limb loss and prosthesis use. Data were analysed using Interpretative Phenomenological Analysis (IPA) in order to gain an understanding of the subjective experiences of post-amputation individuals and of prosthetists of the postamputation process.
Results Analysis led to identification of four key themes: Personal Identity, Social Identity, The Prosthesis and Communication. These themes were relevant for both groups. The meanings that they held for the two groups, however, differed in relation to key elements of the post-amputation experience.
Conclusions Both groups have a shared interest in the process of prosthetic limb fitting and rehabilitation and yet come from very differing perspectives. The fitting and use of a prosthetic device is not a simple, technical process but rather involves a combination of psychological, social and practical components all of which must be recognized in the rehabilitation process. The differing expectations and understandings held by both groups become especially evident in interactions between individuals with limb loss and prosthetists. Communications between members of these groups can provide a central point for addressing differences in their understandings of living with limb loss and might provide a focus for further developments in research and practice. Background While pregnancy is an opportune time to intervene in problematic substance use, multiple barriers exist for women requiring these services. Perinatal substance use necessitates a complex coordination of healthcare and social services for the mother-child dyad. This coordination is further complicated by intersectional stigma. Qualitative methodologies can be instrumental for understanding these complexities and can benefit advocacy work by providing contextualized, narrative accounts to policy and decision-makers. Aim This presentation will describe how, in five separate acts, an academic-community collaborative study supported several local service provision initiatives over a six-year span. Methods The study employed a grounded theory design to understand how services are provided to pregnant women affected by substances. Data collection included interviews and focus groups with service providers as well as observations and informal conversations at community meetings, conferences and workshops around the topic area. Publicly available documents were also collected and reviewed. Situational analysis and research poetics were used to elucidate and crystalize the complexities of the data.
Results Findings are presented in 5 acts that demonstrate how the researcher was able to engage with the community and allow findings to be applied in real time. In addition to developing a process model of service delivery (Act 1), the researcher: supported the development and implementation of an integrated reproductive health program (Act 2); tracked, documented, and evaluated a knowledge transfer intervention on maternal opioid use (Act 3), and helped design a countywide demonstration project to improve service utilization for the population (Act 4). The fifth act outlines future directions for a full-scale dissemination study. Conclusions The community-engaged approach shaped the study's emerging design, which then influenced subsequent program development and delivery. Qualitative methodologies, when combined with community-engaged approaches, can support the timely application of contextualized findings that are delivered through established relationships, using persuasive formats.

THE FUTURE OF SOCIAL RESEARCH ABOUT PAEDIATRIC CARDIOLOGY SERVICES IN THE UK
Rosa Mendizabal, Priscilla Alderson, Katy Sutcliffe. UCL, London, UK

10.1136/bmjopen-2019-QHRN.43
Before the NHS was established, without state funding few families could afford paediatric services. But since 1948, the NHS has funded and gradually developed the necessary paediatric medical, surgical, nursing and technical services, the training and research. From the 1970s onwards, paediatric cardiology, the care of children born with abnormal hearts, developed exponentially. Research and development have continued. Around 30 abnormalities were identified in the 1970s; today, 3000 innate heart abnormalities are treated by 2500 different techniques. Technologies have transformed the way heart problems are investigated, diagnosed, treated and prevented. The NHS as a national service has also been vital in providing a few highly specialised centres that serve networks of local hospitals, and transfer children swiftly and safely between them.
There are doubts whether the national funding, planning and administration of the NHS will continue, or be broken into local services, overwhelmed by public health and social care needs. Costly super-specialties may be neglected. BREXIT, if it occurs, is likely to increase difficulties with the supply of funding, staffing, equipment, research and medicines.
Social research about the future of paediatric cardiology will need to address: space (relations between local and supraregional centres and international supply chains of staff, research and technologies); time (how past, present and future changes emerge through dynamic processes); the dialectic of structure and agency; uncertainty (and theories of possibility and absence); and inter-disciplinarity that examines and connects health care expertise, planning and administration, staff training and support, policy and funding, and the interpretive views and actual experiences of the involved families and practitioners.
The aim of this paper is to summarise how critical realism offers concepts and analytical frameworks, which connect disparate but essential parts of the complex service, to assist research about the present and future of British paediatric cardiology services. Background The internet is integral to young people (YP) providing round-the-clock access to information and support. We previously identified how, when, and why YP use online resources and highlighted variation in how these are introduced by their healthcare team. Aims We sought to understand how healthcare professionals (HCP) perceived online information and support for young people with cancer. Methods Semi-structured interviews with 8 HCPs across the UK informed the development of a survey completed by 38 HCPs. Framework analysis was used to identify key themes and the survey was analysed descriptively. Results Seven themes emerged: . Views about YPs use of online resources: HCP felt it was important to facilitate access to the internet and it was part of their role to do this safely. . How YPs online needs change along their cancer timeline: Professionals described increasing internet use nearing the end and after treatment. . Different platforms where HCPs refer YP online: websites HCPs trusted so recommended to YP. . Are young people online needs currently met? HCP felt the internet supported factual information about diagnosis and treatment, but most participants agreed unmet needs around other parts of the cancer timeline existed i.e. end-oftreatment. . Recognition of the emotional relationship between young people and the internet: HCPs described emotions which trigger YP to search i.e. 'panic' and 'curiosity'. . Barriers and concerns when referring YP to online resources: the biggest perceived barrier to access was costs to the NHS and most concerning factor was keeping YP safe online. . Strategies used in practice: included the use of caveats, guiding and pre-empting by searching themselves.
Conclusion We will present key findings from each theme and detail recommendations from the study that could be adopted internationally as a benchmark for best practice for online information and support. Background Several investigations have highlighted variable and sometimes inadequate care at end of life. 1,2 A consistent theme of guidance and reviews 3,4 is the importance of good quality communication. Current guidance 5 does not address the unique circumstances of critical care. Differentiating between treatments which prolong death or enable recovery is