Identifying the unmet information and support needs of women with autoimmune rheumatic diseases during pregnancy planning, pregnancy and early parenting: mixed-methods study.
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ABSTRACT:
SUBMITTER: Phillips R
PROVIDER: S-EPMC6390539 | biostudies-literature | 2018
REPOSITORIES: biostudies-literature
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Identifying the unmet information and support needs of women with autoimmune rheumatic diseases during pregnancy planning, pregnancy and early parenting: mixed-methods study.
Phillips Rhiannon R Pell Bethan B Grant Aimee A Bowen Daniel D Sanders Julia J Taylor Ann A Edwards Adrian A Choy Ernest E Williams Denitza D
BMC rheumatology 20180727
<h4>Background</h4>Autoimmune rheumatic diseases (ARDs) such as inflammatory arthritis and Lupus, and many of the treatments for these diseases, can have a detrimental impact on fertility and pregnancy outcomes. Disease activity and organ damage as a result of ARDs can affect maternal and foetal outcomes. The safety and acceptability of hormonal contraceptives can also be affected. The objective of this study was to identify the information and support needs of women with ARDs during pregnancy p ...[more]
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Project description:ObjectiveWomen of reproductive age who have autoimmune rheumatic diseases [ARDs] have expressed a need to be better supported with making decisions about pregnancy. Women with ARDs want their motherhood identities and associated preferences to be taken into account in decisions about their healthcare. The aim of this study was to explore the interplay between illness and motherhood identities of women with ARDs during preconception decision making.MethodsTimeline-facilitated qualitative interviews with women diagnosed with an ARD [18-49 years old]. Participants were purposively sampled based on the following three criteria: thinking about getting pregnant, currently pregnant, or had young children. Interviews were thematically analysed.ResultsTwenty-two women were interviewed face-to-face [N = 6] or over the telephone [N = 16]. Interview length ranged from 20 minutes to 70 minutes, with a mean length of 48 minutes. Three main themes were identified: prioritisation, discrepancy, and trade-off. Difficulties in balancing multiple identities in healthcare encounters were reported. Women used 'self-guides' as a reference for priority setting in a dynamic process that shifted as their level of disease activity altered and as their motherhood identity became more or less of a focus at a given point in time. Women's illness and motherhood identities did not present in isolation but were intertwined.ConclusionsFindings highlight the need for holistic person-centred care that supports women with the complex and emotive decisions relating to preconception decision-making. In practice, health professionals need to consider women's multiple and sometimes conflicting identities, and include both their condition and family associated goals and values within healthcare communication.
| S-EPMC9635698 | biostudies-literature
Project description:To examine whether survivorship care planning (receipt of written treatment summary or instructions for follow-up care) is associated with unmet needs among adolescent and young adult (AYA) cancer survivors (aged 15-39 at diagnosis).We used data from the 2010 LIVESTRONG Survey for People Affected by Cancer. Outcome variables were survivor reports of unmet needs, including information on late effects of cancer treatment, fertility issues, cancer recurrence, and family cancer risk. We used multivariable logistic regression models to determine whether receipt of either a treatment summary or follow-up care instructions was associated with each unmet needs after controlling for sociodemographic and cancer history factors.Of the AYA respondents (N?=?1395), only 30% reported receipt of a written treatment summary and 86% received instructions for follow-up care. The most commonly reported unmet need was addressing recurrence concerns (80%), followed by information on late effects (78%), family risk of cancer (51%), and fertility information (45%). In multivariable analyses, receipt of a written treatment summary was associated with lower odds of having unmet needs about late effects information (odds ratio; OR?=?0.51 [0.37-0.71]) and recurrence concerns (OR?=?0.55 [0.39-0.79]). Receipt of follow-up care instructions was associated with lower odds of unmet needs about late effects information (OR?=?0.29 [0.15-0.58]) and fertility information (OR?=?0.62 [0.42-0.91]).Survivorship care planning including written treatment summaries and follow-up care instructions may help reduce unmet information and service needs of AYA survivors. This study provides further evidence for the importance of survivorship care planning as a way to improve survivor outcomes.
| S-EPMC5467130 | biostudies-literature
Project description:OBJECTIVE:Male breast cancer (MBC) is rare. Information about breast cancer is usually designed for female patients. However, in males this disease and some side effects differ from its female counterpart. Therefore, there is a need for male-specific information. The aim was to assess unmet information needs of (a) MBC patients and (b) health professionals. METHODS:Dutch MBC patients (diagnosed between 2011 and 2016 in 21 hospitals), patient advocates and partners were invited to participate in focus groups and/or complete a paper-based questionnaire on information needs. In addition, an online questionnaire on information needs was sent to health professionals involved in MBC patient care. RESULTS:In three focus groups with MBC patients (N = 12) and partners (N = 2) the following unmet information themes were identified: patients' experiences/photographs, symptoms, (delay of) diagnosis, treatments, side effects, follow-up, psychological impact/coping, genetics and family, research and raising awareness. 77 of 107 MBC patients (72%) completed the questionnaire: most patients lacked information about acute (65%) or late (56%) side effects, particularly sexual side effects. Among health professionals, 110 of 139 (79%) had searched for MBC-related information, specifically: patient information, anti-hormonal therapy, genetic testing, research, and psychosocial issues. CONCLUSIONS:Unmet information needs in MBC patients and health professionals were identified. Specific information on MBC should be developed to improve timely diagnosis, quality of life, treatment, and survival. A targeted website is an ideal tool to meet these needs. Therefore, we integrated these results into a user-centered design to develop an informative website, www.mannenmetborstkanker.nl.
| S-EPMC7317856 | biostudies-literature
Project description:ObjectivesInterstitial lung disease is frequent in SSc (SSc-ILD) and associates with significantly reduced quality of life. Here we aimed to analyse patient pathways, and experiences of patients and healthcare providers (HCPs) in order to identify unmet needs in the management of SSc-ILD patients.MethodsSemi-structured qualitative interviews conducted in eight European countries looked at HCP (n = 95) and patient perspectives (n = 47) using two sets of 70 research questions. Pre-diagnostic, diagnostic and post-diagnostic phases of the patient pathway were systematically explored.Results(i) In the pre-diagnostic phase several gaps were identified by HCPs and patients in all participating countries: limited disease knowledge among primary care physicians and specialists, lack of accurate patient information, and delayed and/or inappropriate referral. (ii) The diagnostic phase is in most countries coordinated by rheumatologists, who are also the main point of care. Depending on the local health system, organization of multidisciplinary collaboration varies. HCPs issued lack of national guidelines, while patients stated difficulties obtaining disease-related information. (iii) In the post-diagnostic phase, HCPs and patients indicated lack of curative treatment, specialized nurses, and paramedical and psychological support. Patients and caregivers additionally expressed the need for clear information on SSc-ILD.ConclusionLack of disease specific knowledge, gaps in national healthcare systems and insufficient information and support for patients and caregivers were identified as unmet needs to ensure timely diagnosis, provide better patient management and to improve quality of life in SSc-ILD patients.
| S-EPMC8788003 | biostudies-literature
Project description:ObjectivesThe aim was to assess the perceived needs of medicines information and information sources for pregnant women in various countries.DesignCross-sectional internet-based study.SettingMultinational.ParticipantsPregnant women and women with children less than 25 weeks.Primary and secondary outcome measuresThe need for information about medicines was assessed by a question: 'Did you need information about medicines during the course of your pregnancy?' A list of commonly used sources of information was given to explore those that are used.ResultsAltogether, 7092 eligible women responded to the survey (5090 pregnant women and 2002 women with a child less than 25 weeks). Of the respondents, 57% (n=4054, range between different countries 46-77%) indicated a need for information about medicines during their pregnancy. On average, respondents used three different information sources. The most commonly used information sources were healthcare professionals-physicians (73%), pharmacy personnel (46%) and midwifes or nurses (33%)-and the internet (60%). There were distinct differences in the information needs and information sources used in different countries.ConclusionsA large proportion of pregnant women have perceived information needs about medicines during pregnancy, and they rely on healthcare professionals. The internet is also a widely used information source. Further studies are needed to evaluate the use of the internet as a medicines information source by pregnant women.
| S-EPMC3641472 | biostudies-literature
Project description:BackgroundThe COVID-19 pandemic has impacted the lives of expectant parents and parents of young babies, with disruptions in health care provision and loss of social support.ObjectiveThis study investigated the impact of the COVID-19 pandemic and its associated lockdown on this population through the lens of users of the UK National Health Service-approved pregnancy and parenting smartphone app, Baby Buddy. The study aims were threefold: to gain insights into the attitudes and experiences of expectant and recent parents (with babies under 24 weeks of age) during the COVID-19 pandemic; to investigate whether Baby Buddy is meeting users' needs during this time; and to identify ways to revise the content of Baby Buddy to better support its users now and in future.MethodsA mixed methods study design combining a web-based survey with semistructured telephone interviews among Baby Buddy users in the United Kingdom was applied. Data were collected from April 15 to mid-June 2020, corresponding to weeks 4-13 of the lockdown in the United Kingdom.ResultsA total of 436 expectant (n=244, 56.0%) and recent (n=192, 44.0%) parents responded to the web-based survey, of which 79.1% (n=345) were aged 25-39 years and 17.2% (n=75) spoke English as their second language. Of the 436 respondents, 88.5% (386/436) reported increased levels of anxiety around pregnancy, birth, and being a new parent, and 58.0% (253/436) were concerned about their emotional and mental health. Of the 244 pregnant respondents, 43.4% (n=106) were concerned about their physical health. Telephone interviews with 13 pregnant women and 19 recent parents revealed similarly increased levels of anxiety due to reduced health care provision and loss of support from friends and family. Although a minority of respondents identified some positive outcomes of lockdown, such as family bonding, many telephone interviewees reported feeling isolated, disregarded, and overwhelmed. Recent parents were particularly anxious about the impact of the lockdown on their baby's development and socialization. Many interviewees were also concerned about their physical health as a consequence of both limited access to face-to-face medical appointments and their own poorer dietary and physical activity behaviors. Across both samples, 97.0% (423/436) of respondents reported that Baby Buddy was currently helping them, with many commenting that its role was even more important given the lack of face-to-face support from health care and parenting organizations. Greater speed in updating digital content to reflect changes due to the pandemic was suggested.ConclusionsThe COVID-19 pandemic has created heightened anxiety and stress among expectant parents and those with a young baby, and for many, lockdown has had an adverse impact on their physical and mental well-being. With reductions in health care and social support, expectant and new parents are increasingly relying on web-based resources. As a free, evidence-based app, Baby Buddy is well positioned to meet this need. The app could support its users even more by actively directing them to the wealth of existing content relevant to their concerns and by adding content to give users the knowledge and confidence to meet new challenges.
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Project description:In an age where autoimmune rheumatic diseases are successfully managed with biologics, their discontinuation in pregnancy is inadvisable without careful forethought; maternal disease activity is associated with adverse pregnancy outcomes, which has long-term implications for both mother and offspring. We aim to provide clinicians with the necessary tools to facilitate decision-making - when a biologic should be used, when it can be discontinued in pregnancy if appropriate. The pathophysiology of these biologic molecules and their effect on fertility, pregnancy and parturition are discussed. A summary of the 2016 international guidelines (European League Against Rheumatism and British Society in Rheumatology) on biologics in pregnancy has been tabulated; more recent publications are discussed in depth. Data on transplacental-transfer ratios and breastmilk excretion rates are also included. Biologic effects on organogenesis, their implications for the exposed infant in terms of infection risks and vaccination requirements are included, and future directions for research proposed.
| S-EPMC7133102 | biostudies-literature
Project description:OBJECTIVE:To explore whether there is a potential for greater use of research-based information in public health practice in a local setting. Secondly, if research-based information is relevant, to explore the extent to which this generates questioning behaviour. DESIGN:Qualitative study using focus group discussions, observation and interviews. SETTING:Public health practices in Norway. PARTICIPANTS:52 public health practitioners. RESULTS:In general, the public health practitioners had a positive attitude towards research-based information, but believed that they had few cases requiring this type of information. They did say, however, that there might be a potential for greater use. During five focus groups and six observation days we identified 28 questions/cases where it would have been appropriate to seek out research evidence according to our definition. Three of the public health practitioners identified three of these 28 cases as questions for which research-based information could have been relevant. This gap is interpreted as representing unrecognised information needs. CONCLUSIONS:There is an unrealised potential in public health practice for more frequent and extensive use of research-based information. The practitioners did not appear to reflect on the need for scientific information when faced with new cases and few questions of this type were generated.
| S-EPMC29105 | biostudies-literature
Project description:The complement system plays a double role in pregnancy exerting both protective and damaging effects at placental level. Complement activation at fetal-maternal interface participates in protection against infectious agents and helps remove apoptotic and necrotic cells. Locally synthesized C1q contributes to the physiologic vascular remodeling of spiral arteries characterized by loss of smooth muscle cells and transformation into large dilated vessels. Complement activation triggered by the inflammatory process induced by embryo implantation can damage trophoblast and other decidual cells that may lead to pregnancy complications if the cells are not protected by the complement regulators CD55, CD46, and CD59 expressed on cell surface. However, uncontrolled complement activation induces placental alterations resulting in adverse pregnancy outcomes. This may occur in pathological conditions characterized by placental localization of complement fixing antibodies directed against beta2-glycoprotein 1, as in patients with anti-phospholipid syndrome, or circulating immune complexes deposited in placenta, as in patients with systemic lupus erythematosus. In other diseases, such as preeclampsia, the mechanism of complement activation responsible for complement deposits in placenta is unclear. Conflicting results have been reported on the relevance of complement assays as diagnostic and prognostic tools to assess complement involvement in pregnant patients with these disorders.
| S-EPMC7481445 | biostudies-literature
Project description:PurposeTo critically appraise studies to identify experiences of unmet supportive care needs of individuals affected by testicular cancer.MethodsA registered priori systematic review was conducted in accordance with Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. CINAHL, PsycINFO, and MEDLINE were searched for quantitative, qualitative, and mixed methods studies using a wide range of search terms. All articles were double screened according to a pre-determined eligibility criterion. Reference lists of the final included studies were checked for further eligible studies. The review process was managed using Covidence systematic review software. Data from the studies were extracted, methodological quality appraisal conducted, and a narrative synthesis conducted.ResultsOf the 72 papers identified, 36 studies were included. In descending order of frequency of need, psychological needs were identified in 26/36, physical needs 18/36, interpersonal/intimacy needs 19/36, health system/information needs 11/36, cognitive needs 9/36, social needs 7/36, and of equal frequencies counts of 4/36 for family, practical, and patient-clinician information needs. Only one study explored spiritual needs and no daily living needs were identified.ConclusionsThe experience of needs varied in terms of frequency and distress which were commonly influenced by the age of the individual across the cancer care continuum persisting after 1-year post-treatment.Implications for cancer survivorsWhen caring for individuals affected by testicular cancer, clinicians are encouraged to take a holistic lens to cancer care, particularly to explore issue or concerns that young men affected by testicular cancer might be embarrassed or reticent to discuss.
| S-EPMC10960773 | biostudies-literature