Gillian Thomson

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.

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.

Pathways to emotional closeness in neonatal units - a cross-national qualitative study.

BackgroundResearch shows evidence for the importance of physical and emotional closeness for the infant, the parent and the infant-parent dyad. Less is known about how, when and why parents experience emotional closeness to their infants in a neonatal unit (NU), which was the aim of this study.MethodsA qualitative study using a salutogenic approach to focus on positive health and wellbeing was undertaken in three NUs: one in Sweden, England and Finland. An ‘emotional closeness’ form was devised, which asked parents to describe moments/situations when, how and why they had felt emotionally close to their infant. Data for 23 parents of preterm infants were analyzed using thematic networks analysis.ResultsA global theme of ‘pathways for emotional closeness’ emerged from the data set. This concept related to how emotional, physical, cognitive and social influences led to feelings of emotional closeness between parents and their infants. The five underpinning organising themes relate to the: Embodied recognition through the power of physical closeness; Reassurance of, and contributing to, infant wellness; Understanding the present and the past; Feeling engaged in the day to day and Spending time and bonding as a family.ConclusionThese findings generate important insights into why, how and when parents feel emotionally close. This knowledge contributes to an increased awareness of how to support parents of premature infants to form positive and loving relationships with their infants. Health care staff should create a climate where parents’ emotions and their emotional journey are individually supported.

Negative impressions of childbirth in a North-West England student population

Abstract Background: Sociocultural childbirth representations can influence the perceptions of childbirth negatively. In this paper we report on a survey study to explore the factors associated with negative impressions of childbirth in a North-West England University student sample. We also explored whether different sources and perceptions of childbirth information were linked to fear of childbirth. Methods: All students received a survey link via an online messaging board and/or direct e-mail. Female students who were 18–40 years of age and childless (but planned to have children in the future) were invited to participate. Demographics, birth preferences, a fear of birth and general anxiety measures were included as well as questions about what sources of information shaped students’ attitudes toward pregnancy and birth (i.e. visual/written media, experiences of friends/family members, school-based education and other) and impressions of birth from these sources (i.e. positive, negative, both positive and negative and not applicable). Results: Eligible students (n = 276) completed the online questionnaire. The majority were Caucasian (87%) with a mean age of 22.6 years. Ninety-two students (33.3%) reported negative childbirth impressions through direct or vicarious sources. Students with negative birth impressions were significantly more likely to report higher fear of birth scores. Negatively perceived birth stories of friends/family members, and mixed perceptions of visual media representations of birth were associated with higher fear of birth scores. Having witnessed a birth first-hand and describing the experience as amazing was linked to lower fear scores. Conclusion: First-hand observations of birth, especially positive experiences, had implications for salutary outcomes. Negative or conflicting perceptions of vicarious experiences were associated with increased levels of childbirth fear. While further research is needed, these insights suggest a need for positive birth stories and messages to be disseminated to mitigate any negative effects of indirect accounts.

Cross-cultural development and psychometric evaluation of a measure to assess fear of childbirth prior to pregnancy

BACKGROUND Assessment of childbirth fear, in advance of pregnancy, and early identification of modifiable factors contributing to fear can inform public health initiatives and/or school-based educational programming for the next generation of maternity care consumers. We developed and evaluated a short fear of birth scale that incorporates the most common dimensions of fear reported by men and women prior to pregnancy, fear of: labour pain, being out of control and unable to cope with labour and birth, complications, and irreversible physical damage. METHODS University students in six countries (Australia, Canada, England, Germany, Iceland, and the United States, n = 2240) participated in an online survey to assess their fears and attitudes about birth. We report internal consistency reliability, corrected-item-to-total correlations, factor loadings and convergent and discriminant validity of the new scale. RESULTS The Childbirth Fear - Prior to Pregnancy (CFPP) scale showed high internal consistency across samples (α > 0.86). All corrected-item-to total correlations exceeded 0.45, supporting the uni-dimensionality of the scale. Construct validity of the CFPP was supported by a high correlation between the new scale and a two-item visual analogue scale that measures fear of birth (r > 0.6 across samples). Weak correlations of the CFPP with scores on measures that assess related psychological states (anxiety, depression and stress) support the discriminant validity of the scale. CONCLUSION The CFPP is a short, reliable and valid measure of childbirth fear among young women and men in six countries who plan to have children.

Perceptions of European medical staff on the facilitators and barriers to physical closeness between parents and infants in neonatal units

Studies have provided insights into factors that may facilitate or inhibit parent–infant closeness in neonatal units, but none have specifically focused on the perspectives of senior neonatal staff. The aim of this study was to explore perceptions and experiences of consultant neonatologists and senior nurses in five European countries with regard to these issues.

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.

Managing risk in cancer presentation, detection and referral: a qualitative study of primary care staff views

Objectives In the UK, there have been a number of national initiatives to promote earlier detection and prompt referral of patients presenting to primary care with signs and symptoms of cancer. The aim of the study was to explore the experiences of a range of primary care staff in promoting earlier presentation, detection and referral of patients with symptoms suggestive of cancer. Setting Six primary care practices in northwest England. Participants: 39 primary care staff from a variety of disciplines took part in five group and four individual interviews. Results The global theme to emerge from the interviews was ‘managing risk’, which had three underpinning organising themes: ‘complexity’, relating to uncertainty of cancer diagnoses, service fragmentation and plethora of guidelines; ‘continuity’, relating to relationships between practice staff and their patients and between primary and secondary care; ‘conflict’ relating to policy drivers and staff role boundaries. A key concern of staff was that policymakers and those implementing cancer initiatives did not fully understand how risk was managed within primary care. Conclusions Primary care staff expressed a range of views and opinions on the benefits of cancer initiatives. National initiatives did not appear to wholly resolve issues in managing risk for all practitioners. Staff were concerned about the number of guidelines and priorities they were expected to implement. These issues need to be considered by policymakers when developing and implementing new initiatives.

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

Why do some women choose to freebirth in the UK? An interpretative phenomenological study

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 .