RESUMO
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.
Assuntos
Asma , População Branca , Asma/terapia , Criança , Pesquisa Participativa Baseada na Comunidade , Grupos Focais , Humanos , Pesquisa QualitativaRESUMO
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.
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Endometriose , Doença Crônica , Emoções , Família , Feminino , Humanos , Masculino , Parceiros SexuaisRESUMO
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.
Assuntos
Povo Asiático/psicologia , Asma/terapia , Conhecimentos, Atitudes e Prática em Saúde , Pais/psicologia , População Branca/psicologia , Antiasmáticos/efeitos adversos , Criança , Pré-Escolar , Gerenciamento Clínico , Feminino , Humanos , Entrevistas como Assunto , Masculino , Pesquisa Qualitativa , Reino UnidoRESUMO
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.
Assuntos
Asma/epidemiologia , Asma/terapia , Acessibilidade aos Serviços de Saúde/estatística & dados numéricos , Disparidades em Assistência à Saúde/estatística & dados numéricos , Ásia/etnologia , Povo Asiático , Criança , Pré-Escolar , Feminino , Humanos , Masculino , Fatores Socioeconômicos , Reino Unido/epidemiologiaRESUMO
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.
Assuntos
Doença Crônica/psicologia , Endometriose/psicologia , Características da Família , Autoimagem , Adulto , Feminino , Humanos , Entrevistas como Assunto , Acontecimentos que Mudam a Vida , Masculino , Casamento , Pesquisa QualitativaRESUMO
A small number of studies from the USA and Europe have provided some data on the profile and characteristics of women who have undergone oocyte cryopreservation for what has been termed elective, social or non-medical reasons; however, little is known in a UK context about which women are undergoing oocyte cryopreservation or their reproductive intentions and actions after the procedure. Drawing on data from an exploratory study of 23 UK resident women who had undergone social oocyte cryopreservation, the demographic profile of these women, their reproductive intentions and actions are discussed, as well as their attitudes and intentions towards their cryopreserved oocytes should they never require them in treatment. The study found that, at the time of oocyte cryopreservation, women were on average 36.7 years of age, were university educated, with 65% of the sample holding further postgraduate or professional qualifications. Fifty-seven per cent of the participants were in professional employment. All participants identified as heterosexual and 87% were not in a relationship at the time of cryopreserving their oocytes. Most (88%) participants stated that they would donate unwanted oocytes to research or to other women for use in fertility treatment should they never require them.
Assuntos
Criopreservação , Oócitos/citologia , Adulto , Demografia , Feminino , Humanos , Reino UnidoRESUMO
This paper draws on the findings of the first survey of surrogacy arrangements in Human Fertilisation and Embryology Authority (HFEA) licensed fertility clinics since 1998. Given the complex social, ethical and legal issues involved, surrogacy continues to raise debate worldwide and fuel calls for increased domestic provision in developed countries. However, little is known about how recent changes have affected HFEA licensed clinics. A 24-item online survey was undertaken between August and October 2013, designed to improve understanding of recent trends and current practices associated with UK-based surrogacy, and consider the implications for future policy and practice in UK and cross-border surrogacy arrangements. The response rate was 51.4%, comprising 54 clinics. Quantitative data were analysed using descriptive statistics, and open-ended qualitative responses analysed for extending understanding. Of the participating clinics, 42.6% offered surrogacy (mostly gestational surrogacy). Heterosexual couples using gestational surrogacy were the largest group currently using services followed by male same-sex couples. Most clinics reported having encountered problems with surrogacy treatments, suggesting barriers still exist to expanding the UK provision of surrogacy arrangements. It is important that professionals are well informed about the legal implications of surrogacy and that clinics have consistent and appropriate operational protocols for surrogacy arrangements.
Assuntos
Técnicas de Reprodução Assistida/legislação & jurisprudência , Mães Substitutas/legislação & jurisprudência , Aconselhamento , Feminino , Fertilidade , Humanos , Masculino , Políticas , Gravidez , Técnicas de Reprodução Assistida/ética , Reino UnidoRESUMO
BACKGROUND: South Asian children with asthma are less likely to receive prescriptions and more likely to suffer uncontrolled symptoms and acute asthma admissions compared with White British children. Understanding barriers are therefore vital in addressing health inequalities. We undertook a systematic review identifying explanatory factors for barriers and facilitators to asthma management in South Asian children. South Asians were defined as individuals of Indian, Pakistani or Bangladeshi descent. METHODS: Data Sources - Medline, HMIC, EMBASE, ASSIA, Web of Science, BNI, CINAHL, PsycINFO, OpenSIGLE, CRD, Scopus, NHS Evidence, Cochrane Library, Campbell Collaboration, RCPCH, ATS, ERS, Asthma UK, Google Scholar & Asthma Guidelines (BTS, GINA, ATS, Monash, NAEPP, Singapore & New Zealand) to August 2013.Inclusion Criteria - Qualitative, quantitative or mixed methods research with primary focus on identifying explanations for barriers and/or facilitators to asthma management in South Asian children aged 0-18 years with diagnosed/suspected asthma and/or carers and/or healthcare professionals.Data Extraction - Three authors independently reviewed, selected & extracted eligible articles with disagreements resolved by research team discussion. RESULTS: 15 studies encompassing 25,755 children, 18,483 parents/carers and 239 healthcare professionals were included. Barriers and explanatory factors identified were:1. Lack of asthma knowledge in families and healthcare professionals.2. Under-use of preventer medications.3. Non-acceptance/denial of asthma.4. Over-reliance on Emergency Department management.5. Communication problems.6. Non-adherence to medication.7. Use of complementary therapies.Little facilitators regarding asthma management were identified. CONCLUSIONS: Several key issues were identified as likely to be ethnic-specific to South Asian families, rather than a reflection of minority status: impact of parental and professional knowledge and beliefs, health service utilisation pattern explanations and the impact of prejudice and stigmatisation. Other explanations such as language barriers are not strictly ethnic specific but instead reflect a minority position.Further research is required to identify why barriers exist, the mechanisms by which they impact on asthma management and how they can be overcome. Furthermore, understanding the difference between barriers and explanations that are ethnic-specific and those that are related to being a minority will enable the application of generic system-wide interventions where ethnicity is not the issue and ethnically-tailored interventions where needed.
Assuntos
Asma/prevenção & controle , Barreiras de Comunicação , Conhecimentos, Atitudes e Prática em Saúde , Adolescente , Asma/etnologia , Bangladesh , Criança , Proteção da Criança , Pré-Escolar , Feminino , Disparidades em Assistência à Saúde , Humanos , Índia , Lactente , Recém-Nascido , Masculino , Paquistão , Educação de Pacientes como AssuntoRESUMO
While social science research has begun to demonstrate the significant impact of infertility and involuntary childlessness for men, far fewer studies have specifically explored the male experience of, or men's involvement in, infertility treatment-seeking and there are few published studies which specifically describe men's experiences with cross-border reproduction. This paper presents data from the first UK study of transnational treatment-seeking and specifically explores men's involvement in this process. Data from interviews with 10 men and 34 women who were seeking treatment abroad are organized according to three themes: 'going along with it'; 'being a rock'; and 'doing their bit'. The paper argues that gender is an important aspect of the cross-border treatment experience and that both traditional and emergent gender identities are expressed in the process of treatment-seeking. Healthcare providers need to actively explore men's perspectives of the treatment process in all locations, to improve quality of care by reducing men's feelings of marginalization and enhancing their experience of treatment, especially but not exclusively, around the issue of semen collection.
Assuntos
Infertilidade/psicologia , Turismo Médico/psicologia , Homens/psicologia , Técnicas de Reprodução Assistida/psicologia , Adulto , Feminino , Humanos , Masculino , Marginalização SocialRESUMO
Assisted reproduction technologies have developed at an extraordinary rate in recent years. This, combined with the changing landscape of legal, technical and social possibilities, enables gay men to consider their options for fatherhood as new opportunities emerge for them to create families. Media coverage of gay celebrities embracing surrogacy as a way of having a family and high-profile legal cases have raised awareness of surrogacy across the world. However, gay fatherhood achieved through assisted reproduction is a highly under-researched area, both in the UK and internationally. The research that currently exists on gay fatherhood is largely related to gay men who become parents through processes such as adoption and fostering and children conceived through previous heterosexual relationships. Much of this evidence has centred on parenting experiences, the outcomes for children or the legal perspectives. This paper outlines the different types of surrogacy and the legal issues facing gay men who choose this route to parenthood, summarizes the limited research on gay men and surrogacy and discusses gaps in the current knowledge base.
Assuntos
Homossexualidade Masculina , Poder Familiar/psicologia , Técnicas de Reprodução Assistida/psicologia , Humanos , Masculino , Técnicas de Reprodução Assistida/legislação & jurisprudência , Mães Substitutas/legislação & jurisprudência , Mães Substitutas/psicologiaRESUMO
There is a wealth of research exploring the psychological consequences of infertility and assisted reproduction technology, a substantial body of sociological and anthropological work on 'reproductive disruptions' of many kinds and a small but growing literature on patient perspectives of the quality of care in assisted reproduction. In all these fields, research studies are far more likely to be focused on the understandings and experiences of women than those of men. This paper discusses reasons for the relative exclusion of men in what has been called the 'psycho-social' literature on infertility, comments on research on men from psychological and social perspectives and recent work on the quality of patient care, and makes suggestions for a reframing of the research agenda on men and assisted reproduction. Further research is needed in all areas, including: perceptions of infertility and infertility treatment seeking; experiences of treatment; information and support needs; decisions to end treatment; fatherhood post assisted conception; and the motivation and experiences of sperm donors and men who seek fatherhood through surrogacy or co-parenting. This paper argues for multimethod, interdisciplinary research that includes broader populations of men which can contribute to improved clinical practice and support for users of assisted reproduction treatment.
Assuntos
Infertilidade/psicologia , Homens/psicologia , Marginalização Social , Humanos , Masculino , Técnicas de Reprodução Assistida/psicologia , Sexismo , Apoio SocialRESUMO
Involvement of service users in decision making, in both clinical and research settings, has become a central feature of many health and research funding policies in the last 15 years. Over the same timeframe, there has been an increasing focus on children's rights, promoted by the UN Convention of the Rights of the Child, which gives children a right to be involved in decisions that affect their lives. In a research setting, this has resulted in increased engagement of children in research, as opposed to relying on parents or carers to represent their children, and a shift from research on children to research with children. In this article, we discuss collaboration with children under the age of 16 years in health research: what this means and why (or why not) to do it. The definition of collaboration is discussed and the lines among collaboration, involvement, participation and participatory research considered. The risks and benefits of collaboration are reviewed, both theoretical and evidence based, where evidence exists. The review ends with a look towards the future including the need for agreed definitions, better reporting of collaboration and other patient and public involvement activities with children to build up the much needed evidence base, the need for cost-benefit evaluations and, most importantly, the need for careful consideration as to whether collaborating with children is appropriate in each circumstance.
Assuntos
Tomada de Decisões , Pesquisa sobre Serviços de Saúde/organização & administração , Benchmarking , Criança , Comportamento Cooperativo , Tomada de Decisões/ética , Ética em Pesquisa , Pesquisa sobre Serviços de Saúde/ética , Humanos , Projetos de PesquisaRESUMO
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.
RESUMO
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.
RESUMO
Media reporting of 'fertility tourism' tends to portray those who travel as a cohesive group, marked by their desperation and/or selfishness and propensity towards morally questionable behaviour. However, to date little has been known about the profile of those leaving the UK for treatment. This paper discusses the first UK-based study of patient assisted reproduction travel that was designed to explore individual travel trajectories. It is argued that existing ways of conceptualizing cross-border reproductive care as 'fertility or reproductive tourism' are in danger of essentializing what the data suggest are diverse, complex and often ambiguous motivations for reproductive travel. The concept of seriality is used to suggest that, whilst 'reproductive tourists' share some characteristics, they also differ in significant ways. This paper argues that, through an examination of the personal landscapes of fertility travel, the diverse processes involved in reproductive travel can be better understood and policymakers can be assisted to avoid what might be regarded as simplistic responses to cross-border reproductive care.
Assuntos
Conhecimentos, Atitudes e Prática em Saúde , Turismo Médico/psicologia , Motivação , Técnicas de Reprodução Assistida/economia , Técnicas de Reprodução Assistida/psicologia , Características da Família , Feminino , Pesquisas sobre Atenção à Saúde/métodos , Humanos , Masculino , Gravidez , Reino UnidoRESUMO
Cross-border reproductive care (CBRC) has attracted considerable attention in media and professional publications. The aim of this review is to present a critical narrative overview of the published evidence on CBRC. A systematic search of key academic databases was undertaken with no time restrictions set for publication. This was supplemented by additional searches of key websites, reference chaining and enquiries to people working in the field. A total of 54 items are included in the review, including both empirical research studies (18) and debate papers (36). The key themes discussed are: terminology and definitions; incidence; experiences; explanations; implications; and policy responses. Significant methodological limitations and gaps in the literature are identified. Evidence on incidence is scant, though it suggests that CBRC is increasing. The literature suggests legal, social and political drivers, which vary in importance geographically and between individuals. Limited findings on patient perceptions suggest a broadly positive patient experience. Suggested policy responses include prohibition, regulatory harmonization and harm minimization. There is a need for better international data collection tools and both quantitative and qualitative work which encompasses views of patients, donors, surrogates and professionals and which explores the implications for healthcare services in sending countries.
Assuntos
Turismo Médico , Técnicas de Reprodução Assistida , Humanos , Turismo Médico/estatística & dados numéricos , Formulação de Políticas , Técnicas de Reprodução Assistida/estatística & dados numéricosRESUMO
OBJECTIVE: To describe the lay meanings of sickle cell disease (SCD) in the Ashanti region of Ghana. DESIGN: Depth interviews with 31 fathers of people with SCD; a focus group with health professionals associated with the newborn sickle cell screening programme, and a focus group with mothers of children with SCD. RESULTS: Whilst there are discourses that associate sickle cell with early or recurrent death, with supernatural undermining of family well-being, and with economic challenges in purchasing medical care, other discourses that value children and other family practices that resist stigma are also in evidence. CONCLUSION: Lay perspectives on SCD are constructed in the contexts of enduring culture (the high value placed on children); changing culture (medicine and research as available alternative discourses to supernatural ones); altered material circumstances (newborn screening producing cohorts of children with SCD); changing political situations (insurance-based treatment); enhanced family resources (the experience of a cohort of young people with SCD). Above all the praxis of successfully caring for a child with SCD, and the political experience of sharing that praxis, stands in opposition to discourses of death and helps parents resist stigma and despair.
Assuntos
Anemia Falciforme/etnologia , Anemia Falciforme/psicologia , Pai/psicologia , Mães/psicologia , Percepção , Adulto , Idoso , Feminino , Grupos Focais , Gana , Conhecimentos, Atitudes e Prática em Saúde , Humanos , Masculino , Pessoa de Meia-Idade , Aceitação pelo Paciente de Cuidados de Saúde , Estigma Social , Adulto JovemRESUMO
The experiences of young people living with a sickle cell disorder in schools in England are reported through a thematic analysis of forty interviews, using Bourdieu's notions of field, capital and habitus. Young people with sickle cell are found to be habitually dys-positioned between the demands of the clinic for health maintenance through self-care and the field of the school, with its emphases on routines, consistent attendance and contextual demands for active and passive pupil behaviour. The tactics or dispositions that young people living with sickle cell can then employ, during strategy and struggle at school, are therefore fragile: they work only contingently, transiently or have the unintended consequences of displacing other valued social relations. The dispositions of the young people with sickle cell are framed by other social struggles: innovations in school procedures merely address aspects of sickle cell in isolation and are not consolidated into comprehensive policies; mothers inform, liaise, negotiate and advocate in support of a child with sickle cell but with limited success. Reactions of teachers and peers to sickle cell have the enduring potential to drain the somatic, cultural and social capital of young people living with sickle cell.
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Serviços de Saúde Escolar/estatística & dados numéricos , Instituições Acadêmicas , Traço Falciforme/psicologia , Estudantes/psicologia , Adaptação Psicológica , Adolescente , Adulto , Fatores Etários , População Negra , Criança , Pré-Escolar , Doença Crônica , Cultura , Inglaterra/epidemiologia , Etnicidade , Feminino , Humanos , Masculino , Negociação , Preconceito , Autocuidado , Traço Falciforme/epidemiologia , Estresse Psicológico , Estudantes/estatística & dados numéricos , Inquéritos e Questionários , Adulto JovemRESUMO
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.
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Infertilidade , Feminino , Fertilização in vitro , Humanos , Masculino , Poder Familiar , Pais , GravidezRESUMO
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.