1 Maternity services across Europe during the pandemic has undergone changes to limit virus transmission; however, many changes are not evidence-based. 2 Although these changes were introduced to keep women, babies and healthcare staff safe, the exclusion of companions and the separation of mothers and babies is particularly antithetical to a human rights-based approach to quality care. 3 A poll of COST Action 18211 network members showed that inconsistency in the application of restrictions was high, and there were significant deviations from the recommendations of authoritative bodies. 4 Concerns have emerged that restrictions in practice may have longer term negative impacts on mothers and their families and, in particular, may impact on the long-term health of babies. 5 When practice changes deviate from evidence-based frameworks that underpin quality care, they must be monitored, appraised and evaluated to minimise unintended iatrogenic effects.
Marfan syndrome (MFS) is a multisystemic, autosomal dominant connective tissue disorder that occurs de novo in 25%. In many families, parent and child(ren) are affected, which may increase distress in parents. To assess distress, 42 mothers (29% MFS) and 25 fathers (60% MFS) of 43 affected children, completed the validated screening‐questionnaire Distress thermometer for parents of a chronically ill child, including questions on overall distress (score 0–10; ≥4 denoting “clinical distress”) and everyday problems (score 0–36). Data were compared to 1,134 control‐group‐parents of healthy children. Mothers reported significantly less overall distress (2, 1–4 vs. 3, 1–6; p = .049; r = −.07) and total everyday problems (3, 0–6 vs. 4, 1–8; p = .03; r = −.08) compared to control‐group‐mothers. Mothers without MFS reported significantly less overall distress compared to mothers with MFS, both of a child with MFS (1, 0–4 vs. 3.5, 2–5; p = .039; r = −.17). No significant differences were found between the father‐groups, nor between the group of healthy parents of an affected child living together with an affected partner compared to control‐group‐parents. No differences in percentages of clinical distress were reported between mothers and control‐group‐mothers (33 vs. 42%); fathers and control‐group‐fathers (28 vs. 32%); nor between the other groups. Distress was not associated with the children's MFS characteristics. Concluding, parents of a child with MFS did not show more clinical distress compared to parents of healthy children. However, clinical distress was reported in approximately one‐third and may increase in case of acute medical complications. We advise monitoring distress in parents of a child with MFS to provide targeted support.
The objective of this study was to assess the association between psychosocial factors (in terms of anxiety, somatization, depression, and optimism) and pain (in terms of headache pain intensity and pain-related disability), in patients with a painful temporomandibular disorder (TMD) and one of the following headache types: migraine, tension-type headache (TTH), or headache attributed to TMD, corrected for the influence of bruxism. A retrospective study was conducted at an orofacial pain and dysfunction (OPD) clinic. Inclusion criteria were painful TMD, with migraine, TTH, and/or headache attributed to TMD. Linear regressions were performed to assess the influence of psychosocial variables on pain intensity and on pain-related disability, stratified per headache type. The regression models were corrected for bruxism and the presence of multiple headache types. A total of 323 patients (61% female; mean age 42.9, SD 14.4 years) were included. Headache pain intensity only had significant associations in TMD-pain patients with headache attributed to TMD, and anxiety showed the strongest relation (β = 0.353) with pain intensity. Pain-related disability was most strongly associated with depression in TMD-pain patients with TTH (β = 0.444), and with somatization in patients with headache attributed to TMD (β = 0.399). In conclusion, the influence of psychosocial factors on headache pain intensity and pain-related disability depends on the headache type presenting.
Psychosocial problems related to social isolation are a growing issue for wellbeing and health and have become a significant societal problem. This is especially relevant for children and adults with chronic illnesses and disabilities, and those spending extended periods in hospitals or permanently living in assisted living facilities. A lack of social relationships, social connectivity, and the inability to travel freely leads to feelings of isolation and loneliness. Loneliness interventions often use mediated environments to improve the feeling of connectedness. It has been proven that the utilization of haptic technologies enhances realism and the sense of presence in both virtual environments and telepresence in physical places by allowing the user to experience interaction through the sense of touch. However, the technology application is mostly limited to the experiences of serious games in professional environments and for-entertainment-gaming. This project aims to explore how haptic technologies can support the storytelling of semi-scripted experiences in VR to improve participants’ sense of presence and, therefore, the feeling of connectedness. By designing and prototyping the experience, the project aims to obtain insights and offer a better understanding of designing haptic-technology-supported storytelling and its potential to improve connectedness and become a useful tool in isolation interventions. The project will be conducted through the process of participants’ co-creation.
In the Netherlands, 125 people suffer a stroke every day, which annually results in 46.000 new stroke patients Stroke patients are confronted with combinations of physical, psychological and social consequences impacting their long term functioning and quality of live. Fortunately many patients recover to their pre-stroke level of functioning, however, almost half of them never will. Consequently, rehabilitation often means that patients need to adapt to a new reality in their lives, requiring not only physical but also psychosocial adjustments. Nurses play a key role during rehabilitation of stroke patients. However, when confronted with psychosocial problems, they often feel insecure about identifying the specific psycho-social needs of the individual patient and providing adequate care. In our project ‘Early Detection of Post-Stroke Depression’, (SIA RAAK; 2010-12-36P), we developed a toolkit focusing on early identification of depression after stroke continued with interventions nurses can use during hospitalisation. During this project it became clear that evidence regarding possible interventions is scarce and inclusive. Moreover feasibility of interventions is often not confirmed. Our project showed that during the period of hospital admission patients and health care providers strongly focus on surviving the stroke and on the physical rehabilitation. Therefore, we concluded that to make one step beyond we first have to go one step back. To strengthen psychosocial care for patients after stroke we have to add, reconsider and shape knowledge in context of health care practices in a systematic way, resulting in evidence based and practice informed stepping stones. With this project we aim to collect these stepping stones and develop a nursing care programme that improves psychosocial well-being of patients after stroke, is tailored to the particular concerns and needs of patients, and is considered feasible for use in the usual care process of nurses in the stroke rehabilitation pathway.
Vulnerable pregnant women are an important and complex theme in daily practice of birth care professionals. Vulnerability is an important risk factor for maternal and perinatal mortality and morbidity. Providing care for these women is often complex. First, because it is not always easy to identify vulnerability. Secondly, vulnerable women more often cancel their appointments with midwives and finally, many professionals are involved while they do not always know each other. Even though professionals are aware of the risks of vulnerability for future mothers and their (unborn) children and the complexity of care for these women, there is no international definition for ‘vulnerable pregnancies’. Therefore, we start this project with defining a mutual definition of vulnerability during pregnancy. In current projects of Rotterdam University of Applied Sciences (RUAS) we define a vulnerable pregnant woman as: a pregnant woman facing psychopathology, psychosocial problems, and/or substance abuse combined with lack of individual and/or social resources (low socioeconomic status, low educational level, limited social network). In the Netherlands, care for vulnerable pregnant women is fragmented and therefore it is unclear for birth care professionals which interventions are available and effective. Therefore, Dutch midwives are convinced that exchanging knowledge and best practices concerning vulnerable pregnancies between midwifery practices throughout Europe could enhance their knowledge and provide midwives (SMB partners in this project) with tools to improve care for vulnerable pregnant women. The aim of this project is to exchange knowledge and best practices concerning vulnerable pregnancies between midwifery practices in several European countries, in order to improve knowledge and skills of midwives. As a result, guidelines will be developed in order to exchange selected best practices which enable midwives to implement this knowledge in their own context. This contributes to improving care for vulnerable pregnant women throughout Europe.
