Nicola Crossland

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.

Nutritional requirements during lactation. Towards European alignment of reference values: the EURRECA network.

There is considerable variation in reference values for micronutrient intake during lactation across Europe. The European Micronutrients Recommendations Aligned project aims to harmonize dietary recommendations throughout Europe. Recommended nutrient intakes during lactation are based on limited data and are often extrapolated from known secretion of the nutrient in milk with adjustments for bioavailability, so that differences between values can be partly ascribed to differences in methodological approaches and how these approaches were applied. Few studies have considered the impact of lactation on the mothers nutritional status. Rather, focus has been placed on the influence of maternal nutritional status on the composition of her breast milk. Most common nutritional deficits in breast milk are the result of maternal deficiencies of the water-soluble vitamins, thiamine, riboflavin and vitamins B6 and B12. Other than maternal vitamin A status, which to some extent is reflected in breast milk, concentrations of fat-soluble vitamins and most minerals in breast milk are less affected by maternal status. Factors relating to suboptimal maternal nutritional status during lactation include maternal age, diet and lifestyle factors and spacing of consecutive births. Recent research is providing new knowledge on the micronutrient requirements of lactating women. Identifying needs for research and improving understanding of the differences in values that have been derived by various committees and groups across Europe will enhance transparency and facilitate the application of dietary recommendations in policy-making decision and their translation into recommendations for lactating women. Given the wide variation in breastfeeding practices across Europe, making nutritional recommendations for lactating women is complex and challenging. Thus, it is crucial to first examine the cultural practices within and across European populations and to assess its relevance before making recommendations.

The push me, pull you of financial incentives and health inequalities: a mixed methods study investigating smoking cessation in pregnancy and breastfeeding

Abstract Background Financial incentives are increasingly considered to address socially patterned behaviours like smoking in pregnancy and breastfeeding. We investigated their mechanisms of action in relation to health inequalities to inform incentive intervention design. Methods The evidence syntheses we undertook were incentive effectiveness, delivery processes, barriers and facilitators to smoking cessation in pregnancy and also breastfeeding; and incentives for lifestyle behaviours. We searched Medline, Embase, CINAHL, PsycINFO, Web of Science, the Cochrane Library (all sections), MIDIRS, ASSIA, and the Trials Register of Promoting Health Interventions for studies published in English between Jan 1, 1990, and March 31, 2012, using a range of natural language, MeSH, and other index terms. Surveys were done with 1144 respondents from the general public and with 497 maternity and early-years health professionals. Qualitative interviews and focus groups were conducted with pregnant women, recent mothers, and partners in three UK settings (n=88); and with 53 service providers, 24 experts and decision makers, and 63 conference attendees. A discrete choice experiment (DCE) was conducted with 320 female current or ex-smokers. Findings Systematic reviews raised concerns about the reach of incentives, particularly to marginalised groups. Baseline characteristics for people who were eligible, approached, and recruited to studies were under-reported. Sample sizes were mostly small. Surveys revealed mixed acceptability. Less educated, white British, and women general public respondents disagreed (odds ratios [OR] 0·5≤OR Interpretation Financial incentives can help some women, but whether they will address inequalities is unclear because of concerns about reach and resistance to being pushed and pulled. Funding The project was funded by the Health Technology Assessment programme (10/31/02) and will be published in full in Health Technology Assessment . The Chief Scientist Office of the Scottish Government Health and Social Care Directorates funds the Nursing Midwifery and Allied Health Professional Research Unit, University of Stirling; and the Health Services Research Unit and the Health Economics Research Unit, University of Aberdeen.

Callers' attitudes and experiences of UK breastfeeding helpline support

BackgroundBreastfeeding peer support, is considered to be a key intervention for increasing breastfeeding duration rates. Whilst a number of national organisations provide telephone based breastfeeding peer support, to date there have been no published evaluations into callers’ experiences and attitudes of this support. In this study we report on the descriptive and qualitative insights provided by 908 callers as part of an evaluation of UK-based breastfeeding helpline(s).MethodsA structured telephone interview, incorporating Likert scale responses and open-ended questions was undertaken with 908 callers over May to August, 2011 to explore callers’ experiences of the help and support received via the breastfeeding helpline(s).ResultsOverall satisfaction with the helpline was high, with the vast majority of callers’ recalling positive experiences of the help and support received. Thematic analysis was undertaken on all qualitative and descriptive data recorded during the evaluation, contextualised within the main areas addressed within the interview schedule in terms of ‘contact with the helplines’; ‘experiences of the helpline service’, ‘perceived effectiveness of support provision’ and ‘impact on caller wellbeing’.ConclusionCallers valued the opportunity for accessible, targeted, non-judgmental and convenient support. Whilst the telephone support did not necessarily influence women’s breastfeeding decisions, the support they received left them feeling reassured, confident and more determined to continue breastfeeding. We recommend extending the helpline service to ensure support can be accessed when needed, and ongoing training and support for volunteers. Further advertising and promotion of the service within wider demographic groups is warranted.

Intervention vignettes as a qualitative tool to refine complex intervention design

Background In trial design, decisions are made about which intervention components/processes to standardise and which remain flexible to maximise utility and/or effectiveness. The intervention-context-system fit for complex interventions impacts on trial recruitment, delivery and outcomes. Survey vignettes and discrete choice experiments are quantitative researcher led approaches which focus on a few measurable attributes. Our aim was to explore the utility of qualitative vignettes as a methodological tool allowing service users/providers to contribute to intervention design.

UK Breastfeeding Helpline support: An investigation of influences upon satisfaction.

BackgroundHelpline services have become an increasingly popular mode of providing community access to information and expert information and advice in the health and welfare sector. This paper reports on data collected from 908 callers to UK-based breastfeeding helplines.MethodsA mixed methods design was adopted utilising a structured interview schedule to elicit callers experiences of the help and support received. In this paper we report on a series of multiple regression models undertaken to elicit the variables associated with callers’ ‘overall satisfaction’ with the helpline service. Three models were constructed; 1) caller demographic/call characteristics; 2) attitudes and effectiveness of service characteristics and 3) impact of support on caller wellbeing.ResultsOverall, 74.6% of callers were very satisfied, and 19.8% were satisfied with the help and support received by the helpline service. The caller demographic/call characteristics found to have a significant relationship with overall satisfaction related to the ease of getting through to the helpline and whether the woman had previously breastfed. Service characteristics associated with overall satisfaction related to whether the information received was helpful and whether the support helped to resolve their issues. The extent to which the volunteer was perceived to have enough time, whether the support had encouraged them to continue breastfeeding, met the caller’s expectations and/or provided the support the caller needed were also significantly associated. Caller outcomes contributing significantly to overall satisfaction concerned callers feeling less stressed, more confident, reassured and determined to continue breastfeeding following the call. Consideration of the effect sizes indicated that key factors associated with overall satisfaction related to: volunteers having sufficient time to deal with the callers’ issues; the information being perceived as helpful; the volunteers providing the support the callers needed; and for callers to feel reassured following the call.ConclusionOverall, these results highlight the value of the breastfeeding helpline(s) in terms of providing rapid, targeted, realistic, practical, and responsive support that provides affirmation and encouragement. The benefits include confidence building and callers feeling reassured and motivated to continue breastfeeding. Care needs to be taken to ensure that helpline support is easily accessible to ensure that callers and their families can access support when needed. This may require consideration of extension to a 24 hour service.

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

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.

A realist review to explore how low-income pregnant women use food vouchers from the UK’s Healthy Start programme

Objectives To explore how low-income pregnant women use Healthy Start food vouchers, the potential impacts of the programme, and which women might experience these impacts and why. Design A realist review. Eligibility criteria for selecting studies Primary or empirical studies (of any design) were included if they contributed relevant evidence or insights about how low-income women use food vouchers from the Healthy Start (UK) or the Special Supplemental Nutrition Program for Women, Infants and Children (WIC) programmes. The assessment of ‘relevance’ was deliberately broad to ensure that reviewers remained open to new ideas from a variety of sources of evidence. Analysis A combination of evidence synthesis and realist analysis techniques was used to modify, refine and substantiate programme theories, which were constructed as explanatory ‘context–mechanism–outcome’–configurations. Results 38 primary studies were included in this review: four studies on Healthy Start and 34 studies on WIC. Two main outcome strands were identified: dietary improvements (intended) and financial assistance (unintended). Three evidence-informed programme theories were proposed to explain how aspects of context (and mechanisms) may generate these outcomes: the ‘relative value’ of healthy eating (prioritisation of resources); retailer discretion (pressure to ‘bend the rules’); the influence of other family members (disempowerment). Conclusions This realist review suggests that some low-income pregnant women may use Healthy Start vouchers to increase their consumption of fruits and vegetables and plain cow’s milk, whereas others may use them to reduce food expenditure and save money for other things.