Healthcare encounters between asylum seekers and health professionals in Maltese primary care.

Background: There is a substantial body of literature that discusses the problematic nature of asylum seeker healthcare in several European countries. However, little is known about how asylum seekers experience primary healthcare in Malta. Aim: This paper draws on a qualitative study that aimed to explore the nature of healthcare encounters between asylum seekers and healthcare professionals in Maltese primary healthcare and the contextual processes which influence these interactions. Methodology: The study utilised critical ethnography, informed by postcolonial theory. Data were collected through observation of encounters between healthcare professionals and asylum seekers (130 hours) and in-depth interviews with asylum seekers (n11), cultural mediators (n4) and Maltese healthcare professionals (n7). Results: Thematic analysis of the combined data resulted in three themes: 'the impact of seeking refuge', 'seeking mutual understanding' and 'seeking resolution'. Healthcare encounters between asylum seekers and professionals are characterised by 'othering' practices, pre-conceived expectations and mutual mistrust. These are shaped by a complex interplay of factors, including damaging experiences of migration, derogatory political and public discourses and inadequate resources. Conclusion: In Maltese primary care, healthcare encounters are highly problematic for both patients and professionals. Nurses could take the lead in developing services to assess complex needs and aid asylum seekers in navigating the healthcare system.

Key considerations when involving children in health intervention design: reflections on working in partnership with South Asian children in the UK on a tailored Management and Intervention for Asthma (MIA) study.

Participatory research is an empowering process through which individuals can increase control over their lives, and allows researchers/clinicians to gain a clearer understanding of a child's needs. However, involving children in participatory research is still relatively novel, despite national and international mandates to engage children in decision making. This paper draws on the learnings from designing the Management and Intervention for Asthma (MIA) study, which used a collaborative participatory method to develop an intervention-planning framework for South Asian children with asthma. There are currently 1 million children in the UK receiving treatment for asthma, making it one of the most prevalent chronic childhood illnesses. Symptoms of asthma are often underrecognized in children from South Asian communities in the UK, contributing to increased disease severity and increased attendance at the emergency department compared to White British children. Despite this, ethnic minorities are often excluded from research and thus absent from the 'evidence base', making it essential to hear their perspectives if health inequalities are to be successfully addressed. We worked alongside healthcare professionals, community facilitators, parents, and children to identify the key concerns and priorities they had and then designed the framework around their needs. Reflecting on the process, we identified several key considerations that need to be addressed when co-developing interventions with children. These include the power dynamics between the parent/researcher and child; navigating the consent/assent process; how parental involvement might affect the research; establishing a convenient time and location; how to keep children engaged throughout the process; tailoring activities to different levels of ability; and accounting for cultural differences. These factors were considered by the researchers when designing the study, however, implementing them was not without its challenges and highlighted the need for researchers to develop expertise in this field. Tailoring existing research methods allowed us to explore children's perceptions, priorities, and experiences of illness more effectively. However, involving children in participatory research is a complex undertaking, and researchers need to ensure that they have the expertise, time, and resources necessary to be able to fully support the needs of child participants before deciding to commit to this approach.

Involving families in health research gives children the opportunity to have more control over their healthcare and can help researchers/clinicians to better understand a child's needs. However, involving children in research is still an uncommon practice despite international pressures to include children in decision making. This paper reflects on the development of the Management and Intervention for Asthma study, which worked with communities to develop a framework for planning health interventions for South Asian children with asthma. There are currently 1 million children in the UK being treated for asthma, making it one of the most common chronic childhood illnesses. Symptoms of asthma are overlooked in children from South Asian communities in the UK, leading to worse health outcomes and more visits to the emergency department. We worked with the community to identify the key concerns and priorities they had, and then jointly designed the framework around their needs. We identified several key things to consider when co-developing interventions with children: Power dynamics Consent/Assent Parental involvement Time and location Engagement Diversity of needs Ethnicity and Culture Adapting our research and engagement methods to suit children's needs enabled us to involve them in the study in a way that allowed us to effectively explore their views, priorities, and experiences of their illness. However, researchers need to make sure that they have the expertise, time, and resources to be able to support the needs of child participants.

Transition to parenthood after successful non-donor in vitro fertilisation: The effects of infertility and in vitro fertilisation on previously infertile couples' experiences of early parenthood.

Recent social science research in the field of parenting following assisted conception has focused on the experiences of donor-assisted conception and surrogacy. This article draws from a study which explored the experiences of the transition to early parenthood in 16 heterosexual non-donor couples and includes a specific consideration of the experiences of men as they navigate this journey. We argue that these couples' transition to early parenthood can be as complex and provisional as in other newer forms of family making as they struggle with an emerging identity as a parent after successful non-donor in vitro fertilisation following their experiences of infertility. Their family making is contingent upon their ability to work at integrating their experiences of infertility and in vitro fertilisation into their emerging identity as a parent. This struggle is prominent when they contemplate a further pregnancy. Considering a sibling causes them further uncertainty and anxiety because it reminds them of their infertile identify and the possibility of further in vitro fertilisation. We report novel findings about the experiences of this transition to parenthood: how couples' identity as parents is shaped by the losses and grief of infertility and the anxiety of in vitro fertilisation. We argue that their struggle with an emerging parenthood identity challenges the normative, naturalised view of non-donor heterosexual in vitro fertilisation parenthood. Our work contributes to the work on identity in parenthood after in vitro fertilisation in an ongoing effort to understand how assisted technologies shape infertile parents' lives. This article reports a small study with a relatively homogeneous sample recruited from one fertility clinic. Nevertheless as an exploratory study of an under researched topic, we discuss useful insights and ideas for further research with larger and more diverse samples.

An integrative literature review of psychosocial factors in the transition to parenthood following non-donor-assisted reproduction compared with spontaneously conceiving couples.

The paper reports an integrative literature review of research into the psychosocial factors which shape the transition to parenthood in couples following non-donor in vitro fertilization in comparison with those conceiving spontaneously. Nineteen papers of non-donor IVF and SC mothers and fathers were included. Differences between groups were reported for a range of psychosocial measures during the transition from pregnancy to parenthood including: the control couples feel they have over their lives (locus of control), parental adjustment and child behaviour, parental stress, parental investment in the child, self-esteem and self-efficacy, greater levels of protectiveness (separation anxiety) towards child, marital and family functioning, family alliance, marital satisfaction and communication, as well as anxiety, indirect aggression and lowered respect for the child. We have conceptualised these differences as three substantive themes which reflect psychosocial factors shaping transition to parenthood in parents after non-donor AR: namely social support, relationships and emotional well-being, which are in turn influenced by gender differences. These findings have implications for health care professionals' assessment of individual couples' support needs.

A structured collaborative approach to intervention design using a modified intervention mapping approach: a case study using the Management and Interventions for Asthma (MIA) project for South Asian children.

BACKGROUND: To describe how using a combined approach of community-based participatory research and intervention mapping principles could inform the development of a tailored complex intervention to improve management of asthma for South Asian (SA) children; Management and Interventions for Asthma (MIA) study. METHODS: A qualitative study using interviews, focus groups, workshops, and modified intervention mapping procedures to develop an intervention planning framework in an urban community setting in Leicester, UK. The modified form of intervention mapping (IM) included: systematic evidence synthesis; community study; families and healthcare professionals study; and development of potential collaborative intervention strategies. Participants in the community study were 63 SA community members and 12 key informants; in-depth semi-structured interviews involved 30 SA families, 14 White British (WB) families and 37 Healthcare Professionals (HCPs) treating SA children living with asthma; prioritisation workshops involved 145 SA, 6 WB and 37 HCP participants; 30 participants in finalisation workshops. RESULTS: Two key principles were utilised throughout the development of the intervention; community-based participatory research (CBPR) principles and intervention mapping (IM) procedures. The CBPR approach allowed close engagement with stakeholders and generated valuable knowledge to inform intervention development. It accounted for diverse perceptions and experiences with regard to asthma and recognised the priorities of patients and their families/caregivers for service improvement. The 'ACT on Asthma' programme was devised, comprising four arms of an intervention strategy: education and training, clinical support, advice centre and raising awareness, to be co-ordinated by a central team. CONCLUSIONS: The modified IM principles utilised in this study were systematic and informed by theory. The combined IM and participatory approach could be considered when tailoring interventions for other clinical problems within diverse communities. The IM approach to intervention development was however resource intensive. Working in meaningful collaboration with minority communities requires specific resources and a culturally competent methodology.

Men, chronic illness and healthwork: accounts from male partners of women with endometriosis.

Currently dominant in medical discourse, the concept of self-management sees the responsibility for health and illness shift from the state to the individual. However, while this emphasis on individual responsibility and management has burgeoned, the role and status of partners and other family members in the management of chronic illness remains under-theorised. While self-management privileges individual responsibility for the management of chronic illness, the role of partners remains unclear. This paper utilises data from a study of heterosexual couples' experiences of living with the chronic gynaecological condition endometriosis to explore how male partners engage in its day-to-day management. In all, 22 couples participated in in-depth, semi-structured interviews with each partner interviewed separately (n = 44). Data were analysed thematically and dyadically, informed by an interpretivist relational approach. The paper utilises the concept of healthwork to describe the illness work, everyday life work, biographical work and emotion work men engaged in. The paper demonstrates how the conceptual value of healthwork is enhanced by incorporating an analysis of the emotional effort required in managing chronic illness. The paper illustrates the value of investigating the role of partners in managing chronic illness to provide a fuller account of the distributed and relational nature of healthwork.

Factors influencing the utilisation of free-standing and alongside midwifery units in England: a qualitative research study.

OBJECTIVE: To identify factors influencing the provision, utilisation and sustainability of midwifery units (MUs) in England. DESIGN: Case studies, using individual interviews and focus groups, in six National Health Service (NHS) Trust maternity services in England. SETTING AND PARTICIPANTS: NHS maternity services in different geographical areas of England Maternity care staff and service users from six NHS Trusts: two Trusts where more than 20% of all women gave birth in MUs, two Trusts where less than 10% of all women gave birth in MUs and two Trusts without MUs. Obstetric, midwifery and neonatal clinical leaders, managers, service user representatives and commissioners were individually interviewed (n=57). Twenty-six focus groups were undertaken with midwives (n=60) and service users (n=52). MAIN OUTCOME MEASURES: Factors influencing MU use. FINDINGS: The study findings identify several barriers to the uptake of MUs. Within a context of a history of obstetric-led provision and lack of decision-maker awareness of the clinical and economic evidence, most Trust managers and clinicians do not regard their MU provision as being as important as their obstetric unit (OU) provision. Therefore, it does not get embedded as an equal and parallel component in the Trust's overall maternity package of care. The analysis illuminates how implementation of complex interventions in health services is influenced by a range of factors including the medicalisation of childbirth, perceived financial constraints, adequate leadership and institutional norms protecting the status quo. CONCLUSIONS: There are significant obstacles to MUs reaching their full potential, especially free-standing midwifery units. These include the lack of commitment by providers to embed MUs as an essential service provision alongside their OUs, an absence of leadership to drive through these changes and the capacity and willingness of providers to address women's information needs. If these remain unaddressed, childbearing women's access to MUs will continue to be restricted.

Women's experience of social egg freezing: perceptions of success, risks, and 'going it alone'.

Very few studies have explored women's experiences of social egg freezing and the limited primary research on this topic has suggested that users find the process of freezing eggs emotionally challenging. We, therefore, undertook semi-structured interviews with 31 women who identified as undergoing egg freezing for social reasons in order to explore how female users of social egg freezing technology reported their experience of freezing eggs for 'social' reasons. Interviews lasted between 40 minutes and 2 hours, were audio recorded and transcribed verbatim. Data were analyzed using thematic analysis assisted by Nvivo 10. Women employed multiple concepts of egg freezing 'success'. They reported a lack of detailed discussion of post-freezing processes and outcomes in their encounters with clinicians, and, contrary to the recommendations of professional associations, were not given clinic or age-specific information. Few women perceived freezing as involving physical risks. However, many participants reported the process of egg freezing as emotionally challenging, primarily linked to feelings of isolation and stigma due to their single status. Participants were generally satisfied with the treatment they received from clinics. However, they expressed a desire for more detailed information about potential outcomes from egg freezing and suggested ways in which clinics might address the emotional challenges of undertaking this process as an unpartnered person.

Conducting dyadic, relational research about endometriosis: A reflexive account of methods, ethics and data analysis.

Despite a growing literature on the value of relational data in studies of social phenomena, individuals still commonly constitute the basic unit of analysis in qualitative research. Methodological aspects of interviewing couples, particularly interviewing partners separately, and of conducting dyadic analysis have received scant attention. This article describes the experience of conducting separate interviews with both partners in 22 heterosexual couples (n = 44) in a study of the impact of the gynaecological condition endometriosis. In order to advance current methodological thinking regarding interviewing couples, we describe the dyadic, relational approach employed in designing the study and our specific method of dyadic analysis. We argue that utilising separate interviews with dyadic analysis rather than conducting joint interviews, while not without its ethical, practical and analytical challenges, offers considerable methodological benefits. Such an approach allows a unique relational insight into the impact of chronic illness on couples and how they navigate chronic illness by illuminating both shared and individual interpretations, experiences, understandings and meanings.

An analysis of media reporting on the closure of freestanding midwifery units in England.

PROBLEM: Despite clinical guidelines and policy promoting choice of place of birth, 14 Freestanding Midwifery Units were closed between 2008 and 2015, closures reported in the media as justified by low use and financial constraints. BACKGROUND: The Birthplace in England Programme found that freestanding midwifery units provided the most cost-effective birthplace for women at low risk of complications. Women planning birth in a freestanding unit were less likely to experience interventions and serious morbidity than those planning obstetric unit birth, with no difference in outcomes for babies. METHODS: This paper uses an interpretative technique developed for policy analysis to explore the representation of these closures in 191 news articles, to explore the public climate in which they occurred. FINDINGS AND DISCUSSION: The articles focussed on underuse by women and financial constraints on services. Despite the inclusion of service user voices, the power of framing was held by service managers and commissioners. The analysis exposed how neoliberalist and austerity policies have privileged representation of individual consumer choice and market-driven provision as drivers of changes in health services. This normative framing presents the reasons given for closure as hard to refute and cultural norms persist that birth is safest in an obstetric setting, despite evidence to the contrary. CONCLUSION: The rise of neoliberalism and austerity in contemporary Britain has influenced the reform of maternity services, in particular the closure of midwifery units. Justifications given for closure silence other narratives, predominantly from service users, that attempt to present women's choice in terms of rights and a social model of care.

Qualitative study to identify ethnicity-specific perceptions of and barriers to asthma management in South Asian and White British children with asthma.

OBJECTIVE: This paper draws on the data from the Management and Interventions for Asthma (MIA) study to explore the perceptions and experiences of asthma in British South Asian children using semi-structured interviews. A comparable cohort of White British children was recruited to identify whether any emerging themes were subject to variation between the two groups so that generic and ethnicity-specific themes could be identified for future tailored intervention programmes for South Asian children with asthma. SETTING: South Asian and White British children with asthma took part in semi-structured interviews in Leicester, UK. PARTICIPANTS: Thirty three South Asian and 14 White British children with asthma and aged 5-12 years were interviewed. RESULTS: Both similar and contrasting themes emerged from the semi-structured interviews. Interviews revealed considerable similarities in the experience of asthma between the South Asian and White British children, including the lack of understanding of asthma (often confusing trigger with cause), lack of holistic discussions with healthcare professionals (HCPs), an overall neutral or positive experience of interactions with HCPs, the role of the family in children's self-management and the positive role of school and friends. Issues pertinent to South Asian children related to a higher likelihood of feeling embarrassed and attributing physical activity to being a trigger for asthma symptoms. CONCLUSIONS: The two ethnicity-specific factors revealed by the interviews are significant in children's self-management of asthma and therefore, indicate the need for a tailored intervention in South Asian children.

Running out of time: exploring women's motivations for social egg freezing.

Objective: Few qualitative studies have explored women's use of social egg freezing. Derived from an interview study of 31 participants, this article explores the motivations of women using this technology. Methods: Semi-structured interviews were conducted with 31 users of social egg freezing resident in UK (n = 23), USA (n = 7) and Norway (n = 1). Interviews were face to face (n = 16), through Skype and Facetime (n = 9) or by telephone (n = 6). Data were analyzed using interpretive thematic analysis. Results: Women's use of egg freezing was shaped by fears of running out of time to form a conventional family, difficulties in finding a partner and concerns about "panic partnering", together with a desire to avoid future regrets and blame. For some women, use of egg freezing was influenced by recent fertility or health diagnoses as well as critical life events. A fifth of the participants also disclosed an underlying fertility or health issue as affecting their decision. Conclusion: The study provides new insights in to the complex motivations women have for banking eggs. It identifies how women's use of egg freezing was an attempt to "preserve fertility" in the absence of the particular set of "life conditions" they regarded as crucial for pursuing parenthood. It also demonstrates that few women were motivated by a desire to enhance their career and that the boundaries between egg freezing for medical and for social reasons may be more porous than first anticipated.

Mapping midwifery and obstetric units in England.

OBJECTIVE: to describe the configuration of midwifery units, both alongside&free-standing, and obstetric units in England. DESIGN: national survey amongst Heads of Midwifery in English Maternity Services SETTING: National Health Service (NHS) in England PARTICIPANTS: English Maternity Services Measurements descriptive statistics of Alongside Midwifery Units and Free-standing Midwifery Units and Obstetric Units and their annual births/year in English Maternity Services FINDINGS: alongside midwifery units have nearly doubled since 2010 (n = 53-97); free-standing midwifery units have increased slightly (n = 58-61). There has been a significant reduction in maternity services without either an alongside or free-standing midwifery unit (75-32). The percentage of all births in midwifery units has trebled, now representing 14% of all births in England. This masks significant differences in percentage of all births in midwifery units between different maternity services with a spread of 4% to 31%. KEY CONCLUSIONS: In some areas of England, women have no access to a local midwifery unit, despite the National Institute for Health&Clinical Excellence (NICE) recommending them as an important place of birth option for low risk women. The numbers of midwifery units have increased significantly in England since 2010 but this growth is almost exclusively in alongside midwifery units. The percentage of women giving birth in midwifery units varies significantly between maternity services suggesting that many midwifery units are underutilised. IMPLICATIONS FOR PRACTICE: Both the availability and utilisation of midwifery units in England could be improved.

A qualitative study to identify parents' perceptions of and barriers to asthma management in children from South Asian and White British families.

BACKGROUND: Over one million children receive treatment for asthma in the UK. South Asian children experience excess morbidity and higher rates of hospitalization than the White population. This study aimed to explore perceptions and experiences of asthma and asthma management in British South Asian and White British families, to identify barriers to optimal management and to inform culturally appropriate interventions to improve management. METHODS: A qualitative methodology, using semi-structured interviews was adopted. Members of 30 families from six major South Asian ethnic-religious groups were purposively sampled (n = 49). For comparison, 17 White British parents were interviewed. Topics included understandings of asthma; day-to-day management; interactions with health care providers and the perceived quality of healthcare services. Data were analyzed using interpretive thematic analysis, facilitated by NVivo. Similarities and differences between South Asian and White families were analysed across key themes. RESULTS: Many of the problems facing families of a child with asthma were common to South Asian and White British families. Both had limited understanding of asthma causes and triggers and expressed confusion about the use of medications. Both groups reported delays in receiving a clear diagnosis and many experienced what was perceived as uncoordinated care and inconsistent advice from health professionals. No family had received an asthma plan. South Asian families had more difficulty in recognising severity of symptoms and those with limited English faced additional barriers to receiving adequate information and advice about management due to poor communication support systems. South Asian parents reported higher levels of involvement of wider family and higher levels of stigma. Attendance at the emergency department was related to previous experience, difficulties in accessing primary care, lack of knowledge of alternatives and difficulties in assessing severity. CONCLUSIONS: Barriers to optimal asthma management exist at the individual family, community and healthcare systems levels. Culturally sensitive, holistic and collaboratively designed interventions are needed. Improved communication support for families with lower proficiency in English is required. Healthcare professionals need to ensure that families receive an asthma plan and make greater efforts to check families' understandings of asthma triggers, use of medications, assessment of asthma severity and accessing help.

Asthma management in British South Asian children: an application of the candidacy framework to a qualitative understanding of barriers to effective and accessible asthma care.

BACKGROUND: In the UK, people of South Asian origin with asthma experience excess morbidity, with hospitalisation rates three times those of the majority White population and evidence suggests that South Asian children with asthma are more likely to suffer uncontrolled symptoms and hospital admissions with acute asthma compared to White British children. This paper draws on data from The Management and Interventions for Asthma (MIA) study to identify the operation of barriers to optimal care and good asthma control for South Asian children. METHODS: The MIA study followed a multi-phase, iterative, participatory design, underpinned by the socio-ecological model. Findings presented here are from face-to face, semi-structured interviews with South Asian (Indian, Pakistani and Bangladeshi origin) parents and carers of a child with asthma (n = 49). Interviews were conducted in English or relevant South Asian languages using specially trained community facilitators. Data were transcribed verbatim and analysed according to the principles of interpretive thematic analysis, facilitated by the use of NVivo. RESULTS: Seven dimensions of candidacy are identified: identification of candidacy; navigation; the permeability of asthma services; appearances at health services; adjudications; offers and resistance and operating conditions in the local production of candidacy. The analysis demonstrates several ways in which a potential lack of alignment between the priorities and competencies of British South Asian families and the organization of health services combine to create vulnerabilities and difficulties in effectively managing childhood asthma. CONCLUSIONS: Healthcare systems have a responsibility to develop services that are sensitive and appropriate to the needs of their communities. In South Asian communities, further efforts are required to raise awareness of symptoms and effectively communicate how, when and where to seek help for children. There is a need for improved diagnosis and consistent, effectively communicated information, especially regarding medication. Parents made several suggestions for improving services: presentations about asthma at easily accessible community venues; an advice centre or telephone helpline to answer queries; opportunities for sharing experiences with other families; having information provided in South Asian languages; longer GP appointments; extended use of asthma nurses; and better education for healthcare professionals to ensure consistency of care and advice.

Cross-border-assisted reproduction: a qualitative account of UK travellers' experiences.

Surveys on patients' experiences of cross-border fertility treatment have reported a range of positive and challenging features. However, the number of such studies is limited, and there is no detailed qualitative account of the experiences of UK patients who travel overseas for fertility treatment. The present study used a cross-sectional, qualitative design and in-depth interviews. Fifty-one participants (41 women and 10 men, representing 41 treatment 'cases') participated in semi-structured interviews. The experiences reported were broadly positive with a large proportion of participants (39 cases, 95%) citing a favourable overall experience with only two cases (5%) reporting a more negative experience. Thematic analysis revealed 6 major categories and 20 sub-categories, which described the positive and challenging aspects of cross-border fertility travel. The positive aspects were represented by the categories: 'access', 'control' and 'care and respect'. The more challenging aspects were categorized as 'logistics and coordination of care', 'uncertainty' and 'cultural dissonance'. The study confirms findings from others that despite some challenges, there is a relatively high level of patient satisfaction with cross-border treatment with participants able to extend the boundaries of their fertility-seeking trajectories and in some cases, regain a sense of control over their treatment.

'We needed to change the mission statement of the marriage': biographical disruptions, appraisals and revisions among couples living with endometriosis.

The concept of biographical disruption has been widely applied in sociological explorations of chronic illness and has been subject to much theoretical scrutiny, reflection and development. However, little attention has been given to the impact of biographical disruption beyond the individual level. This article explores the concept from a dyadic perspective, utilising data from an exploratory, qualitative study (ENDOPART) that investigated the impact of endometriosis on women and their male partners. In total, 22 couples participated in in-depth, semi-structured, face-to-face interviews. The women and their partners were interviewed separately and, in most cases, simultaneously, by different interviewers. Data analysis was informed by an interpretivist relational approach, foregrounding the meanings participants applied to their experiences, treating interviews as accounts, and exploring partners' accounts in relation to one another. Two analytic approaches generated several themes for exploration in the context of the concept of biographical disruption: sex and intimacy; planning for and having children; working lives and social lives. The article argues that biographical disruptions are social and inter-relational processes and discusses how couples living with endometriosis negotiated these disruptions, how they were appraised and how lives and expectations were revised as a result.