Learning to live with Parkinson’s disease in the family unit: an interpretative phenomenological analysis of well-being

We investigated family members’ lived experience of Parkinson’s disease (PD) aiming to investigate opportunities for well-being. A lifeworld-led approach to healthcare was adopted. Interpretative phenomenological analysis was used to explore in-depth interviews with people living with PD and their partners. The analysis generated four themes: It’s more than just an illness revealed the existential challenge of diagnosis; Like a bird with a broken wing emphasizing the need to adapt to increasing immobility through embodied agency; Being together with PD exploring the kinship within couples and belonging experienced through support groups; and Carpe diem! illuminated the significance of time and fractured future orientation created by diagnosis. Findings were interpreted using an existential-phenomenological theory of well-being. We highlighted how partners shared the impact of PD in their own ontological challenges. Further research with different types of families and in different situations is required to identify services required to facilitate the process of learning to live with PD. Care and support for the family unit needs to provide emotional support to manage threats to identity and agency alongside problem-solving for bodily changes. Adopting a lifeworld-led healthcare approach would increase opportunities for well-being within the PD illness journey.     

Women��s Challenges with Postpartum Weight Loss

This study was designed to examine women??s experiences of weight loss during the postpartum period. Understanding women??s positive and negative experiences can assist health care providers to successfully intervene in helping women lose weight following pregnancy and avoid long-term weight gain and obesity development. Design: Phenomenology, according to Husserl??s perspective. Setting: Private location of the women??s choosing. Participants: Twenty-six women, who ranged in age from 25 to 35 years, and had given birth within the last 5 years, were interviewed regarding their experiences with postpartum weight loss. The majority of the sample was Caucasian. Interviews were transcribed and themes were identified from each of the interviews. Comparisons were made between interviews to identify common experiences between women. Data were analyzed according to the Giorgi method. The women in the study had a wide range of experiences. Themes that emerged from the interviews related to women??s challenges with return to prepregnancy weight. These included: time and motivation issues, the need for support, and weight and other struggles. This study provides a look inside the lives of women faced with the reality of losing weight after childbirth. Losing weight after delivery is multi-faceted and influenced by many factors. Interventions to assist women with weight loss should target the challenges described in this paper. When effective strategies are developed, education can be done during pregnancy to prepare for the postpartum period. Ultimately, future research efforts can help us to eliminate pregnancy as a risk factor for obesity in women.     

Father’s Education: An Independent Marker of Risk for Preterm Birth

To explore the association between paternal education and preterm birth, taking into account maternal social and economic factors. We analyzed data from a population-based cross-sectional postpartum survey, linked with birth certificates, of women who gave birth in California from 1999 through 2005 (n = 21,712). Women whose infants’ fathers had not completed college had significantly higher odds of preterm birth than women whose infants’ fathers were college graduates, even after adjusting for maternal education and family income [OR (95% CI) = 1.26 (1.01–1.58)]. The effect of paternal education was greater among unmarried women than among married women. Paternal education may represent an important indicator of risk for preterm birth, reflecting social and/or economic factors not measured by maternal education or family income. Researchers and policy makers committed to understanding and reducing socioeconomic disparities in birth outcomes should consider paternal as well as maternal socioeconomic factors in their analyses and policy decisions.     

Risk of Cardiovascular Disease Among Postmenopausal Women with Prior Pregnancy Loss: The Women’s Health Initiative

PURPOSE

Metabolic, hormonal, and hemostatic changes associated with pregnancy loss (stillbirth and miscarriage) may contribute to the development of cardiovascular disease (CVD) in adulthood. This study evaluated prospectively the association between a history of pregnancy loss and CVD in a cohort of postmenopausal women.

METHODS

Postmenopausal women (77,701) were evaluated from 1993–1998. Information on baseline reproductive history, sociodemographic, and CVD risk factors were collected. The associations between 1 or 2 or more miscarriages and 1 or more stillbirths with occurrence of CVD were evaluated using multiple logistic regression.

RESULTS

Among 77,701 women in the study sample, 23,538 (30.3%) reported a history of miscarriage; 1,670 (2.2%) reported a history of stillbirth; and 1,673 (2.2%) reported a history of both miscarriage and stillbirth. Multivariable-adjusted odds ratio (OR) for coronary heart disease (CHD) for 1 or more stillbirths was 1.27 (95% CI, 1.07–1.51) compared with no stillbirth; for women with a history of 1 miscarriage, the OR = 1.19 (95% CI, 1.08–1.32); and for 2 or more miscarriages the OR = 1.18 (95% CI, 1.04–1.34) compared with no miscarriage. For ischemic stroke, the multivariable odds ratio for stillbirths and miscarriages was not significant.

CONCLUSIONS

Pregnancy loss was associated with CHD but not ischemic stroke. Women with a history of 1 or more stillbirths or 1 or more miscarriages appear to be at increased risk of future CVD and should be considered candidates for closer surveillance and/or early intervention; research is needed into better understanding the pathophysiologic mechanisms behind the increased risk of CVD associated with pregnancy loss.     

“My Lung Disease Won’t Go Away, it’s There to Stay”: Profiles of Adaptation to Functional Limitations in Workers with Asthma and COPD

Purpose Earlier research has shown that adaptation (i.e., the way in which employees cope with limitations resulting from their disease) is associated with sick leave. Our aim was to investigate signs of adequate or inadequate adaptation in employees with asthma and COPD. Methods A Q-methodological study was carried out among 34 workers with asthma or COPD. Results Four adaptation profiles were distinguished: the eager, the adjusted, the cautious, and the worried workers. The adaptation profiles provide insight into the different ways in which workers with asthma and COPD cope with their illness at work. Conclusions The adaptation profiles serve as a starting point for the design of appropriate (occupational) care. The eager workers experience little difficulties at work; the cautious workers may need assistance in learning how to accept their disease; the worried workers need reassurance, and may need reactivation; the adjusted workers deserve extra attention, and, when necessary, advice on how to live with their asthma or COPD.     

‘Learning to play with new friends’: systematic quality development work in a leisure-time centre

This article explores the recontextualisation of systematic quality development work (Sqdw) in a leisure-time centre. Two teachers’ processes of planning, organisation, documentation and evaluation were investigated, the aim being to explore the recontextualisation of Sqdw in practice. The study is thus a case study of these teachers’ practice carried out through fieldwork and using different methods. The findings reveal a practice where play with play-boxes is used in a systematic process as a tool to make children's social learning visible. The teachers create possibilities for children's learning in a manner in accordance with a leisure-time tradition where social learning is documented and evaluated. A formal educational discourse is not enacted in this leisure-time centre; instead a social pedagogical approach is reproduced. Nevertheless, Sqdw is enacted and appears to help the teachers make visible their social pedagogical work in a new context.     

Barriers to Unmarried Father Involvement During Infancy: Qualitative Study from Professionals’ Perspectives

Introduction Unmarried fathers in the U.S. face barriers to establishing a relationship with their newborn children that married fathers do not confront. Our study was implemented to determine how systems and services could be modified to better support the engagement of unmarried fathers. Methods We conducted interviews with 35 professionals who interact with primarily low-income unmarried mothers and fathers to elicit their perceptions of such barriers. We developed a social ecological model to inform the study design and used purposive sampling with chain referrals to ensure a wide breadth of perspectives. Themes and subthemes categorizing personal and environmental factors were placed within five nested categories corresponding to different levels of influence on unmarried fathers’ behaviors: public policy, community, institutions, interpersonal relationships, and intrapersonal characteristics, and their intersections. Results Participants challenged as inaccurate the stereotype of unmarried fathers as disengaged and uninterested in being involved with their children. Rather, they described the marginalization and devaluing of unmarried fathers by government policies and family service systems and programs and also the dearth of resources available to them. They called on decision makers to adjust policies and services to be more inclusive of unmarried fathers, to promote father engagement more actively, and to urge direct service providers to respond to fathers as valued individuals. Discussion Adapting to the common reality of nonmarital childbearing will entail a systematic shift in the integration of ways in which we value, understand, include, and serve fathers.

     

Technologies of time: women’s practices of trying to conceive with ovulation biosensing

Ovulation biosensors are devices worn on or used with the body, which can help women detect ovulation. The manufacturers of such devices claim that if women know when they ovulate, couples can arrange heterosexual intercourse during this time, and thus increase their chances of conceiving. Within the contemporary UK context, in which becoming pregnant is presented in the popular media, and in medical discourses, as more difficult for women in their thirties and forties, manufacturers’ claims are attractive for those trying to conceive. Yet few sociological studies have examined women’s practices of ovulation biosensing. Drawing on women’s accounts of tracking ovulation, this paper explores how such practices fit into their trajectories of trying to conceive. It examines why ovulation biosensing seemingly becomes helpful, relevant or important during this time. Ovulation biosensors, it argues, alter the landscape of trying to become pregnant by introducing new stages and materialities which seemingly place women closer to conception. Women engage in ovulation biosensing, not only to help them become pregnant, but also as a way to manage the complexities of fertility and the uncertainties of becoming pregnant in contemporary society.     

Punjabi Immigrant Women’s Breast Cancer Stories

The breast cancer experiences of Punjabi immigrant women, who represent the most populace group of South Asians in Canada, need to be understood in order to inform culturally appropriate cancer services. The purpose of this qualitative study was to explore women’s stories of breast cancer in order to uncover how they made sense of their experiences. Interviews with twelve Punjabi immigrant women who had breast cancer within the last 8 years were available for this study. The four storylines that emerged from the ethnographic narrative analysis were: getting through a family crisis, dealing with just another health problem, living with never-ending fear and suffering, and learning a “lesson from God.” A minor theme, “being part of a close-knit family,” highlighted the family context as the most pronounced influence on the women’s experiences. These findings provide valuable insights into how women’s experiences of breast cancer were shaped by the intersections of culture, family, community, cancer treatments, and interactions with health care professionals.     

Chinese-Australian Women’s Knowledge,Facilitators and Barriers Related to Cervical Cancer Screening: A Qualitative Study

Understanding the different facilitators and barriers to screening within cultural and ethnic groups is important for developing appropriate education and outreach programs to underserved groups. Qualitative methods were employed to gain a rich understanding of participant views. In-depth interviews were conducted with 18 Chinese Australian women in their native languages and analysed using content analysis. Knowledge of cervical cancer was low, and few participants understood the benefits and purpose of screening. Having a doctor’s recommendation was a strong motivator, and returning for screening was encouraged by having a female Chinese doctor perform the exam, receiving a reminder letter and the absence of cost for screening participation. However, participation was inhibited by logistical barriers, cultural beliefs and previous painful screening experiences. A range of multifaceted facilitators and barriers must be considered when developing interventions to increase the rates of cervical screening in this population.     

Internet Message Boards for Pregnancy Loss: Who’s On-Line and Why?

BackgroundPregnancy loss is common, but its significance is often minimized by family, friends, and the community, leaving bereaved parents with unmet need for support. This study sought to describe demographics, usage patterns, and perceived benefits for women participating in Internet pregnancy loss support groups.MethodsWe requested permission to post an anonymous Internet survey on large and active United States Internet message boards for women with miscarriages and stillbirths. The study purposefully oversampled stillbirth sites and included both closed- and open-ended questions. The University of Michigan Institutional Review Board approved the study. Closed-ended questions were summarized and evaluated with bivariate analysis. We performed a qualitative analysis of open-ended data using an iterative coding process to identify key themes.ResultsOf 62 sites queried, 15 granted permission to post the survey on 18 different message boards. We collected 1,039 surveys, of which 1,006 were complete and eligible for analysis. Women were typically white, well educated, and frequent users. They noted message boards helped them to feel less isolated in their loss and grief and they appreciated unique aspects of Internet communication such as convenience, access, anonymity, and privacy. Pregnancy loss message boards are an important aspect of support for many bereaved mothers. African-American women seem to be substantially underrepresented on-line despite being at higher risk for stillbirth.ConclusionInternet message boards serve a unique function in providing support for women with miscarriage and stillbirth. The benefits are often significantly different from those encountered in traditional face-to-face bereavement support.     

Students Learning from Patients: Let’s Get Real in Medical Education

Medical students must be prepared for working in inter-professional and multi-disciplinary clinical teams centred on a patient’s care pathway. While there has been a good deal of rhetoric surrounding patient-centred medical education, there has been little attempt to conceptualise such a practice beyond the level of describing education of communication skills and empathy within a broad ‚professionalism’ framework. Paradoxically, while aiming to strengthen patient–student interactions, this approach tends to refocus on the role modelling of the physician, and opportunities for potentially deep collaborative working relationships between students and patients are missed. A radical overhaul of conventional doctor-led medical education may be necessary, that also challenges the orthodoxies of individualistic student-centred approaches, leading to an authentic patient-centred model that shifts the locus of learning from the relationship between doctor as educator and student to the relationship between patient and student, with expert doctor as resource. Drawing on contemporary poststructuralist theory of text and identity construction, and on innovative models of work-based learning, the potential quality of relationship between student and patient is articulated in terms of collaborative knowledge production, involving close reading with the patient as text, through dialogue. Here, a medical ‚education’ displaces traditional forms of medical ‚training’ that typically involve individual information reproduction. Students may, paradoxically, improve clinical acumen through consideration of silences, gaps, and contradictions in patients as texts, rather than treating communication as transparent. Such paradoxical effects have been systematically occluded or denied in traditional medical education. `No trace anywhere of life, you say... imagination not dead yet, yes, dead, good, imagination dead imagine dead imagine.' Samual Beckett, Imagination Dead Imagine.     

The Excess Preterm Birth Rate Among US-Born (Compared to Foreign-Born) Black Women: The Role of Father’s Education

Maternal and Child Health Journal - To ascertain the component of the excess preterm birth (<?37 weeks, PTB) rate among US-born (compared to foreign-born) Black women...     

Correction to: Reflections on the Clinician’s Role with Individuals Who Self-identify as Transgender

Archives of Sexual Behavior -     

Vitamin D Deficiency in Women with Breast Cancer: A Correlation with Osteoporosis? A Machine Learning Approach with Multiple Factor Analysis

Breast cancer (BC) is the most frequent malignant tumor in women in Europe and North America, and the use of aromatase inhibitors (AIs) is recommended in women affected by estrogen receptor-positive BCs. AIs, by inhibiting the enzyme that converts androgens into estrogen, cause a decrement in bone mineral density (BMD), with a consequent increased risk of fragility fractures. This study aimed to evaluate the role of vitamin D3 deficiency in women with breast cancer and its correlation with osteoporosis and BMD modifications. This observational cross-sectional study collected the following data regarding bone health: osteoporosis and osteopenia diagnosis, lumbar spine (LS) and femoral neck bone mineral density (BMD), serum levels of 25-hydroxyvitamin D3 (25(OH)D3), calcium and parathyroid hormone. The study included 54 women with BC, mean age 67.3 ± 8.16 years. Given a significantly low correlation with the LS BMD value (r² = 0.30, p = 0.025), we assessed the role of vitamin D3 via multiple factor analysis and found that BMD and vitamin D3 contributed to the arrangement of clusters, reported as vectors, providing similar trajectories of influence to the construction of the machine learning model. Thus, in a cohort of women with BC undergoing Ais, we identified a very low prevalence (5.6%) of patients with adequate bone health and a normal vitamin D3 status. According to our cluster model, we may conclude that the assessment and management of bone health and vitamin D3 status are crucial in BC survivors.