Background People with multiple sclerosis (MS) have varied experiences and approaches to self-management This review aimed to explore the experiences of people with MS, and consider the implications of these experiences for clinical practice and research Methods A meta-synthesis of the qualitative literature examining experiences of people with MS was conducted using systematic searches of ProQuest, PubMed, CINAHL and PsycINFO We incorporated feedback from team members with MS as expert patient knowledge-users to capture the complex subjectivities of persons with lived experience responding to research on lived experience of the same disease Results Of 1680 unique articles, 77 met the inclusion criteria We identified five experiential themes: (a) the quest for knowledge, expertise and understanding, (b) uncertain trajectories (c) loss of valued roles and activities, and the threat of a changing identity, (d) managing fatigue and its impacts on life and relationships, and (f) adapting to life with MS These themes were distributed across three domains related to disease (symptoms; diagnosis; progression and relapse) and two contexts (the health-care sector; and work, social and family life) Conclusion The majority of people in the studies included in this review expressed a determination to adapt to MS, indicating a strong motivation for people with MS and clinicians to collaborate in the quest for knowledge Clinicians caring for people with MS need to consider the experiential and social outcomes of this disease such as fatigue and the preservation of valued social roles, and incorporate this into case management and clinical planning

https://onlinelibrary.wiley.com/doi/pdf/10.1111/hex.13093

'It struck at the heart of who I thought I was': A meta-synthesis of the qualitative literature examining the experiences of people with multiple sclerosis.

A greater understanding of the reality of living with myasthenia gravis (MG) may improve management and outcomes for patients. However, there is little published data on the patient perspective of how MG impacts life. Our objective was to reveal the lived experience of MG from the patient perspective. This analysis was led by an international Patient Council comprising nine individuals living with MG who serve as local/national patient advocates in seven countries (Europe and the United States). Insights into the lived experience of MG were consolidated from three sources (a qualitative research study of 54 people with MG or their carers from seven countries; a previous Patient Council meeting [September 2019]; and a literature review). Insights were prioritised by the Patient Council, discussed during a virtual workshop (August 2020) and articulated in a series of statements organised into domains. Overarching themes that describe the lived experience of MG were identified by the patient authors. From 114 patient insights and supporting quotes, the Patient Council defined 44 summary statements organised into nine domains. Five overarching themes were identified that describe the lived experience of MG. These themes include living with fluctuating and unpredictable symptoms; a constant state of adaptation, continual assessment and trade-offs in all aspects of life; treatment inertia, often resulting in under-treatment; a sense of disconnect with healthcare professionals; and feelings of anxiety, frustration, guilt, anger, loneliness and depression. This patient-driven analysis enriches our understanding of the reality of living with MG from the patient perspective.

/pdf/the-lived-experience-of-myasthenia-gravis-a-patient-led-3hprnhn4st.pdf

The Lived Experience of Myasthenia Gravis: A Patient-Led Analysis.

Sufferers from burnout might experience a sincere bonding to their lost lifeworld, which can result in their holding on to their previous worlds while simultaneously trying to unleash themselves. In this article, four experiential dimensions are presented in discussion with the phenomenological insights provided by Merleau-Ponty. These dimensions are "Trapped in the present body," "the balancing act," "precious moments of joy," and "this is my Lifeworld now." In the rehabilitation process, the participants demonstrated deliberate choices and reflective self-cultivation to adjust to their present situation. The illness seemed to promote a search for meaning-and out of the existential chaos, a "new" habitual body might appear. The study provides invaluable information about the rehabilitation process and the need for humanistic interventions.

https://journals.sagepub.com/doi/pdf/10.1177/1049732320914584

Out of Chaos—Meaning Arises: The Lived Experience of Re-Habituating the Habitual Body When Suffering From Burnout:

This study clarifies the need for a renewed account of the body in physiotherapy to fill sizable gaps between physiotherapeutical theory and practice. Physiotherapists are trained to approach bodily functioning from an objectivist perspective; however, their therapeutic interactions with patients are not limited to the provision of natural-scientific explanations. Physiotherapists’ practice corresponds well to theorisation of the body as the bearer of original bodily intentionality, as outlined by Merleau-Ponty and elaborated upon by enactivists. We clarify how physiotherapeutical practice corroborates Merleau-Ponty’s critical arguments against objectivist interpretations of the body; particularly, his analyses demonstrate that norms of optimal corporeal functioning are highly individual and variable in time and thus do not directly depend on generic physiological structures. In practice, objectively measurable physical deviations rarely correspond to specific subjective difficulties and, similarly, patients’ reflective insights into their own motor deficiencies do not necessarily produce meaningful motor improvements. Physiotherapeutical procedures can be understood neither as mechanical manipulations of patients’ machine-like bodies by experts nor as a process of such manipulation by way of instructing patients’ explicit conscious awareness. Rather, physiotherapeutical practice and theory can benefit from the philosophical interpretation of motor disorders as modifications of bodily intentionality. Consequently, motor performances addressed in physiotherapy are interpreted as relational features of a living organism coupled with its environment, and motor disorders are approached as failures to optimally manage the motor requirements of a given situation owing to a relative loss of the capacity to structure one’s relation with their environment through motor action. Building on this, we argue that the process of physiotherapy is most effective when understood as a bodily interaction to guide patients towards discovering better ways of grasping a situation as meaningful through bodily postures and movements.

/pdf/phenomenological-physiotherapy-extending-the-concept-of-1u9i2mjm.pdf

Phenomenological physiotherapy: extending the concept of bodily intentionality

Fertility knowledge is vital to the fertility health of young people and greatly impacts their fertility choices. Delayed childbearing has been increasing in high-income countries, accompanied by the risk of involuntary childlessness or having fewer children than desired. The aim of this study was to investigate knowledge about fertility issues, the related influencing factors, the method of acquiring fertility knowledge, and the relationship between fertility knowledge and fertility intentions among college students. An online cross-sectional survey of Chinese college students was conducted in Hunan Province from March to April 2018. A total of 867 college students from three comprehensive universities responded to a poster invitation utilizing the Chinese version of the Cardiff Fertility Knowledge Scale (CFKS-C). Data were explored and analysed by SPSS (version 22.0) software. Descriptive statistics, chi-squared tests, T-tests, and Pearson’s correlations were used for the measurements. The average percent-correct score on the CFKS-C was 49.9% (SD = 20.8), with greater knowledge significantly related to living in a city district, being not single status, majoring in medicine, being in year 4 or above of study, and intention to have children (all p<0.05). A total of 81.9% of the participants reported that they would like to have children, the average score of the importance of childbearing was 6.3 (SD = 2.7), and the female score was lower than the male score (p = 0.001). A small positive relationship was observed between the CFKS-C and the importance of childbearing (r = 0.074, p = 0.035). Respondents indicated that they gained most of their knowledge from the media and internet (41.4%) and from schools (38.2%). Yong people in college have a modest level of fertility knowledge, a relatively low intention to have a child, and deficiencies in fertility health education. There is a need to improve the accessibility of fertility health services by developing a scientific and reliable fertility health promotion strategy.

/pdf/college-students-responding-to-the-chinese-version-of-4kcmitkfvi.pdf

College Students Responding to the Chinese version of Cardiff Fertility Knowledge Scale Show Deficiencies in Their Awareness: A cross-sectional survey in Hunan, China

For people living with multiple sclerosis (MS), one's own body may no longer be taken for granted but may become instead an insistent presence. In this article, we describe how the body experience of people with MS can reflect an ongoing oscillation between four experiential dimensions: bodily uncertainty, having a precious body, being a different body, and the mindful body. People with MS can become engaged in a mode of permanent bodily alertness and may demonstrate adaptive responses to their ill body. In contrast to many studies on health and illness, our study shows that the presence of the body may not necessarily result in alienation or discomfort. By focusing the attention on the body, a sense of well-being can be cultivated and the negative effects of MS only temporarily dominate experience. Rather than aiming at bodily dis-appearance, health care professionals should therefore consider ways to support bodily eu-appearance.

https://journals.sagepub.com/doi/pdf/10.1177/1049732318796831

The Mindful Body: A Phenomenology of the Body With Multiple Sclerosis.

Objective Delayed childbearing has gradually started to become the norm for higher educational students, with possible increased future fertility risks and psychological distress as a consequence. What do female students expect from their general practitioners (GP) and other health care providers (HCPs) with regard to delaying childbearing? We also looked into indicators that can be used by HCPs to detect female university students who have issues regarding delayed childbearing. Methods Cross sectional study: A total of 398 female students (mean age 21.83; SD = 2.4) from at least three different universities completed the questionnaire (distributed through the Internet and at a students' health service). Potential predictors for having an issue regarding delayed childbearing were assessed with multivariate logistic regression. Results Thirteen percent of 398 female students experienced being childless as more or less problematic. Forty-nine percent thinks having children deserves more attention and 33% of the students expect attention from their GP regarding a possible desire to have children during contraceptive consultations. Four factors demonstrated significant associations with having an issue concerning delayed childbearing: age (these issues also occur in younger students), worrying about fertility, not opting for an abortion if pregnant and dissatisfaction with current contraceptive use. Conclusion HCPs should discuss delayed childbearing with female students, addressing both the decrease of fertility after a certain age (30), the limited range of fertility methods, and the possible negative physical and psychological consequences of postponement. These elements could be included into programmes of sexual and reproductive health training and into pre-conception care and pre-conception education.

/pdf/better-informed-is-better-decided-addressing-the-risks-of-4w9mizyx5k.pdf

Better informed is better decided : Addressing the risks of delaying childbearing for female higher educational students

/pdf/sociale-wijkteams-en-verslavingspreventie-kansen-en-35alkfjw7x.pdf

Sociale wijkteams en verslavingspreventie: kansen en belemmeringen

Strategische verkenning over de rol van sociale wijkteams bij tijdige signalering en interventie bij problematisch gebruik van alcohol en drugs. De resultaten laten zien dat verslavingspreventie door sociale wijkteams nog niet voldoende ontwikkeld is. Dat komt omdat de teams in het algemeen nog zoeken naar het invullen van hun taken. Er blijkt echter ook een tekort aan kennis en vaardigheden rond preventief werken, en rond signalering en interventie bij problematisch gebruik en verslaving. Ook ontbreekt contact en samenwerking met instellingen voor verslavingszorg en hun preventiewerkers.

Sociale wijkteams en verslavingspreventie: Tijdige signalering en interventie bij problematisch gebruik van alcohol en drug

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The Mindful Body: A Phenomenology of the Body With Multiple Sclerosis.

Better informed is better decided : Addressing the risks of delaying childbearing for female higher educational students

Sociale wijkteams en verslavingspreventie: kansen en belemmeringen

Sociale wijkteams en verslavingspreventie: Tijdige signalering en interventie bij problematisch gebruik van alcohol en drug