Heather Morgan

We need to talk about purpose: a critical interpretive synthesis of health and social care professionals’ approaches to self‐management support for people with long‐term conditions

Health policies internationally advocate ‘support for self‐management’, but it is not clear how the promise of the concept can be fulfilled.

Combining PPI with qualitative research to engage ‘harder-to-reach’ populations: service user groups as co-applicants on a platform study for a trial

Plain english summaryIt is recommended that research studies are carried out with or by patients and the public through their involvement from the beginning and in as many stages as possible (known as PPI). Some studies formally invite patients and the public to participate in interviews and focused group discussions to collect views about topics (known as qualitative research). In our study on financial incentives for giving up smoking in pregnancy and breastfeeding, we combined both PPI and qualitative research to include the views of women with a range of experiences of smoking and breastfeeding.We involved two mother and baby groups in disadvantaged areas of North East Scotland and North West England as research partners on our team. First, we asked members to comment on our research plans and documents, which is standard PPI. Second, we asked members to participate in voice recorded discussions, contributing to qualitative research data. These discussions revealed different views from those that we heard through research interviews. They allowed us to develop more relevant research tools and resources. Members also helped us to identify people outside the groups who we could interview.Combining involvement and participation helped us to include the views of a wide range of women from ‘harder-to-reach’ groups who don’t usually take part in research. This was important because the research was intended for women who could benefit from incentives to stop smoking in pregnancy and breastfeed, often present in such groups. Positive continuing relationships and trust improved on involvement or participation alone.AbstractᅟBackgroundPatient and public involvement (PPI) in all research studies is recommended from the earliest point and in as many stages as possible. Qualitative research is also recommended in the early stages of designing complex intervention trials. Combining both together might enable inclusion of ‘harder-to-reach’ perspectives from the target population(s), particularly when the research is intended for their benefit. However, the interface between PPI and qualitative research has received little attention.In a multi-disciplinary, mixed methods study to inform the design of incentive trials for smoking cessation in pregnancy and breastfeeding, we combined PPI and qualitative research, with some overlap. Mother and baby groups from two geographically separate disadvantaged areas, with diverse experiences of the smoking and breastfeeding, but no training or previous involvement in research, were recruited as PPI research grant co-applicants. An iterative partnership approach facilitated involvement in research conduct and design across all project phases. Group PPI members were also invited to contribute to more formal qualitative data collection, as and when indicated by the research questions, and emerging analysis.ResultsWe engaged with ‘harder-to-reach’ women in mother and baby group settings, rather than in academic or home environments. These settings were relaxed and informal, which facilitated rapport-building, disclosures of unexpected information and maintained trust. Twenty-one women participated in standard PPI activities: feedback on study protocols and documents; piloting questionnaires and interview schedules. PPI members voiced some different perspectives from those captured within the qualitative dataset. Nineteen participated in focused qualitative research. Novel aspects were audio recorded PPI discussions, which contributed qualitative data; first, to interpret systematic review findings and construct intervention vignettes for use in the qualitative research; second, to assist with recruitment to improve sample diversity in the formal qualitative dataset; and third, to translate theory and findings presented in a researcher generated logic model into a lay tool. This had face validity for potential trial participants and used the metaphor of a ladder.ConclusionsCombining and overlapping PPI and qualitative research added ‘harder-to-reach’ contributions, sample diversity, trust and engagement in creative approaches beyond what could be achieved through PPI or qualitative research alone.

Unintended Consequences of Incentive Provision for Behaviour Change and Maintenance around Childbirth

Financial (positive or negative) and non-financial incentives or rewards are increasingly used in attempts to influence health behaviours. While unintended consequences of incentive provision are discussed in the literature, evidence syntheses did not identify any primary research with the aim of investigating unintended consequences of incentive interventions for lifestyle behaviour change. Our objective was to investigate perceived positive and negative unintended consequences of incentive provision for a shortlist of seven promising incentive strategies for smoking cessation in pregnancy and breastfeeding. A multi-disciplinary, mixed-methods approach included involving two service-user mother and baby groups from disadvantaged areas with experience of the target behaviours as study co-investigators. Systematic reviews informed the shortlist of incentive strategies. Qualitative semi-structured interviews and a web-based survey of health professionals asked open questions on positive and negative consequences of incentives. The participants from three UK regions were a diverse sample with and without direct experience of incentive interventions: 88 pregnant women/recent mothers/partners/family members; 53 service providers; 24 experts/decision makers and interactive discussions with 63 conference attendees. Maternity and early years health professionals (n = 497) including doctors, midwives, health visitors, public health and related staff participated in the survey. Qualitative analysis identified ethical, political, cultural, social and psychological implications of incentive delivery at population and individual levels. Four key themes emerged: how incentives can address or create inequalities; enhance or diminish intrinsic motivation and wellbeing; have a positive or negative effect on relationships with others within personal networks or health providers; and can impact on health systems and resources by raising awareness and directing service delivery, but may be detrimental to other health care areas. Financial incentives are controversial and generated emotive and oppositional responses. The planning, design and delivery of future incentive interventions should evaluate unexpected consequences to inform the evidence for effectiveness, cost-effectiveness and future implementation.

Incentives to promote breastfeeding: a systematic review

BACKGROUND AND OBJECTIVES: Few women in industrialized countries achieve the World Health Organization’s recommendation to breastfeed exclusively for 6 months. Governments are increasingly seeking new interventions to address this problem, including the use of incentives. The goal of this study was to assess the evidence regarding the effectiveness of incentive interventions, delivered within or outside of health care settings, to individuals and/or their families seeking to increase and sustain breastfeeding in the first 6 months after birth. METHODS: Searches of electronic databases, reference lists, and grey literature were conducted to identify relevant reports of published, unpublished, and ongoing studies. All study designs published in English, which met our definition of incentives and that were from a developed country, were eligible for inclusion. Abstract and full-text article review with sequential data extraction were conducted by 2 independent authors. RESULTS: Sixteen full reports were included in the review. The majority evaluated multicomponent interventions of varying frequency, intensity, and duration. Incentives involved providing access to breast pumps, gifts, vouchers, money, food packages, and help with household tasks, but little consensus in findings was revealed. The lack of high-quality, randomized controlled trials identified by this review and the multicomponent nature of the interventions prohibited meta-analysis. CONCLUSIONS: This review found that the overall effect of providing incentives for breastfeeding compared with no incentives is unclear due to study heterogeneity and the variation in study quality. Further evidence on breastfeeding incentives offered to women is required to understand the possible effects of these interventions.

Incentive interventions for smoking cessation in pregnancy: a mixed methods evidence synthesis

Abstract Background Incentives for smoking cessation in pregnancy are attractive to policy makers because evidence of effectiveness for other interventions is scarce. Our aims were to establish the effectiveness of incentive interventions delivered within or outside the NHS to individuals, families, or organisations that are designed to increase and sustain smoking cessation in pregnancy; investigate how incentive delivery processes work, their acceptability, and how they fit with existing barriers, facilitators, and intrinsic and extrinsic motivators to behaviour change; and work in partnership with mother-and-baby groups to inform the design of incentive trials. Methods This study combines a mixed methods evidence synthesis with primary qualitative and survey research to investigate the perspectives of service users, care providers, the general public, experts, and policy makers. Uniquely, two mother-and-baby groups in areas serving disadvantaged populations in Aberdeen and Blackpool, UK, are study coapplicants, and are providing broad, dynamic, and longitudinal service-user contributions. Researchers attend mother-and-baby groups every 4–6 weeks to feedback findings from evidence synthesis, and record and transcribe discussions of included studies that will iteratively inform future qualitative data collection and analysis, guided by a grounded theory approach. Evidence synthesis follows Cochrane guidance. Detailed searches were done in Medline, Medline-in-Process, Embase, CINAHL, PsycINFO, Web of Science, CENTRAL, Cochrane Database of Systematic Reviews, DARE, HTA, MIDIRS, Applied Social Sciences Index and Abstracts, and the Trials Register of Promoting Health Interventions. 1469 abstracts were identified and 215 full-text reports were screened by two researchers. 21 studies—20 incentivising individuals, one incentivising an organisation—were included in quantitative data analysis and quality assessed with instruments such as Cochrane Risk of Bias and guidance from the Centre for Reviews and Dissemination (dependent on whether the population was randomised). All studies and one survey of attitudes to incentives were included in the delivery processes evidence synthesis, with quality assessment with a Mixed Methods Appraisal Tool. Therefore, one mixed methods coding and data extraction form (MMF) was designed iteratively through piloting with four information-rich studies with form modification after discussion between quantitative and qualitative team members. Quantitative data were extracted from full texts and crosschecked by a second reviewer. Two qualitative researchers independently identified themes that were coded by one with the MMF, with a sample crosschecked by the second. Interpretive themes emerged through discussion and a final thematic framework incorporating continuing service user perspectives is under construction, assisted by NVivo 9 data management software. Findings Incentive interventions identified were multifaceted. 14 (70%) of the 20 patient-level studies verified smoking cessation biochemically rather than relying on self-report. Incentives ranged from four packets of gum to larger incentives—eg, US

Involving Patients in Their Care

50 per month of abstinence. Incentives were often combined with additional smoking cessation components, with varying intensity: 13 (65%) included counselling or behavioural support, 13 (65%) included self-help guides or educational materials, six (30%) included advice to quit, and six (30%) involved social support (eg, including partners or peers) through education materials or encouragement. Few studies were directly comparable, with only four suitable for inclusion in a formal meta-analysis. The relative risk of cessation was 2·77 (95% CI 1·69–4·24), indicating that incentives were effective. Several key themes emerge for delivery processes and acceptability: individual or relational focus; certain or lottery incentives; hedonic or utilitarian incentives; programme bureaucracy meeting chaotic lifestyles; health professional or independent providers; continuity of care; and targeted interventions. Interpretation Incentives show promise for smoking cessation in pregnancy and contextual factors probably moderate effectiveness. Funding Project funded by the HTA programme (10/31/02) and will be published in full in Health Technology Assessment .

“Was that a success or not a success?”: a qualitative study of health professionals’ perspectives on support for people with long-term conditions

There has been growing interest internationally in how health services might more actively involve—and support the involvement of—patients in deciding about their treatments and in the delivery of their own care. Patient involvement can take diverse forms, and can be valued for a range of reasons. There has been a strong tendency for policies and service development initiatives to emphasize the need for health professionals to communicate to inform patients’ choice-making and to encourage patients to make particular practical contributions to their care. Recent studies of patients’ experiences, however, particularly in the context of breast cancer, have highlighted the additional significance of the relational aspects of involvement and the social factors (including those operating within healthcare settings) that influence patients’ potential to contribute. Further research and debate is needed to illuminate the ethical as well as the practical aspects of involving patients in their care.

‘Pushed’ self-tracking using digital technologies for chronic health condition management: a critical interpretive synthesis:

BackgroundSupport for self-management (SSM) is a prominent strand of health policy internationally, particularly for primary care. It is often discussed and evaluated in terms of patients’ knowledge, skills and confidence, health-related behaviours, disease control or risk reduction, and service use and costs. However, these goals are limited, both as guides to professional practice and as indicators of its quality. In order to better understand what it means to support self-management well, we examined health professionals’ views of success in their work with people with long-term conditions. This study formed part of a broader project to develop a conceptual account of SSM that can reflect and promote good practice.MethodsSemi-structured individual interviews (n = 26) and subsequent group discussions (n = 5 groups, 30 participants) with diverse health professionals working with people with diabetes and/or Parkinson’s disease in NHS services in London, northern England or Scotland. The interviews explored examples of more and less successful work, ways of defining success, and ideas about what facilitates success in practice. Subsequent group discussions considered the practical implications of different accounts of SSM. Interviews and group discussions were audio-recorded, transcribed and analysed thematically.ResultsParticipants identified a wide range of interlinked aspects or elements of success relating to: health, wellbeing and quality of life; how well people (can) manage; and professional-patient relationships. They also mentioned a number of considerations that have important implications for assessing the quality of their own performance. These considerations in part reflect variations in what matters and what is realistically achievable for particular people, in particular situations and at particular times, as well as the complexity of questions of attribution.ConclusionsA nuanced assessment of the quality of support for self-management requires attention to the responsiveness of professional practice to a wide, complex range of personal and situational states, as well as actions and interactions over time. A narrow focus on particular indicators can lead to insensitive or even perverse judgements and perhaps counterproductive effects. More open, critical discussions about both success and the assessment of quality are needed to facilitate good professional practice and service improvement initiatives.

Perspectives on financial incentives to health service providers for increasing breast feeding and smoking quit rates during pregnancy: a mixed methods study

Introduction Health policies internationally advocate health services provider support for health services users’ ‘self-management’ of chronic health conditions. Digital technologies are beginning to have a role in delivering such support. ‘Pushed’ self-tracking of health-related information, including imposed measurement of biomedical and behavioural data, is one approach; however, there is little systematic or discursive research. The aim of this research was to explore factors relevant to the implementation of ‘pushed’ self-tracking technologies into support for self-management of chronic health conditions interventions. Methods This paper reports a critical interpretive synthesis of studies involving ‘pushed’ self-tracking using digital technologies to support the self-management of chronic health conditions. The review systematically identified relevant literature, characterised the technologies and discursively explored their implementation and impacts, and human technology interactions. Findings The literature (n = 83), including ‘simple’ (n = 51) and ‘complex’ (n = 32) interventions, perhaps unsurprisingly, concentrates on technical and clinical rather than sociological and behavioural perspectives, which limits understanding. Some attention is paid to experiences and views of providers and users about digital technologies implementation and impacts on the delivery of care, for example: consequences of having increased information; compatibility with current systems; implications for personnel; and human–technology negotiations. Conclusions This is a rapidly developing field and early technical and clinical insights are useful. There are opportunities for researchers to explore the sociological and behavioural aspects, and ethical challenges, of implementing ‘pushed’ self-tracking support programmes too. Detailed multidisciplinary research is needed to understand and guide technical and medical developments that integrate digital technologies into the delivery of care.

The 2016 HIGh Heels: Health effects And psychosexual BenefITS (HIGH HABITS) study: systematic review of reviews and additional primary studies

Objective To explore the acceptability, mechanisms and consequences of provider incentives for smoking cessation and breast feeding as part of the Benefits of Incentives for Breastfeeding and Smoking cessation in pregnancy (BIBS) study. Design Cross-sectional survey and qualitative interviews. Setting Scotland and North West England. Participants Early years professionals: 497 survey respondents included 156 doctors; 197 health visitors/maternity staff; 144 other health staff. Qualitative interviews or focus groups were conducted with 68 pregnant/postnatal women/family members; 32 service providers; 22 experts/decision-makers; 63 conference attendees. Methods Early years professionals were surveyed via email about the acceptability of payments to local health services for reaching smoking cessation in pregnancy and breastfeeding targets. Agreement was measured on a 5-point scale using multivariable ordered logit models. A framework approach was used to analyse free-text survey responses and qualitative data. Results Health professional net agreement for provider incentives for smoking cessation targets was 52.9% (263/497); net disagreement was 28.6% (142/497). Health visitors/maternity staff were more likely than doctors to agree: OR 2.35 (95% CI 1.51 to 3.64; p<0.001). Net agreement for provider incentives for breastfeeding targets was 44.1% (219/497) and net disagreement was 38.6% (192/497). Agreement was more likely for women (compared with men): OR 1.81 (1.09 to 3.00; p=0.023) and health visitors/maternity staff (compared with doctors): OR 2.54 (95% CI 1.65 to 3.91; p<0.001). Key emergent themes were ‘moral tensions around acceptability’, ‘need for incentives’, ‘goals’, ‘collective or divisive action’ and ‘monitoring and proof’. While provider incentives can focus action and resources, tensions around the impact on relationships raised concerns. Pressure, burden of proof, gaming, box-ticking bureaucracies and health inequalities were counterbalances to potential benefits. Conclusions Provider incentives are favoured by non-medical staff. Solutions which increase trust and collaboration towards shared goals, without negatively impacting on relationships or increasing bureaucracy are required.