In the Netherlands, many parents of children with profound intellectual and multiple disabilities care for their children at home. Little is known about how parents and involved healthcare professionals share and align medical care for these children. This study aims to contribute to a better understanding of the dimensions that affect how medical care is shared and how healthcare professionals can align care with family needs. The study design was inspired by grounded theory. We analyzed in-depth interviews with 25 Dutch parents. The analysis identified five dimensions affecting how parents and professionals shared and aligned medical care: fragility, planned care, irregularities, interactions with providers, and parents’ choices. We recognized three distinctive ways these dimensions interplayed, characterizing scenarios of sharing care: dependent care, dialogical care, and autonomous care. The findings illuminated that parental distress decreased when parents could communicate about what they considered important for their child and family and its implications for sharing care. Parents developed their capacity to manage medical care and often evolved in their thinking about the quality of care and life. Sometimes this evolution was due to struggles with the care provided by professionals. Therefore, healthcare professionals may need to broaden the relational work of shared decision-making to include the sharing of medical care. Arrangements need to be continually reassessed as changes in the child’s and family’s situation trigger changes in preferred patterns of sharing care. Commitment to parents’ autonomy implies that healthcare professionals should be attentive to the parents’ emotional and relational needs.
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Many healthcare professionals experience difficulties in discussing sexual health with their patients. The aim of this review was to synthesize results of studies on communication practices in interactions about sexual health in medical settings, to offer healthcare professionals suggestions on how to communicate about this topic. Veel zorgprofessionals ervaren problemen bij het bespreken van seksuele gezondheid met hun patiënten. Het doel van deze review was een synthese te presenteren van studies naar communicatiepraktijken in interactie over seksuele gezondheid in medische settings, om zorgprofessionals handreikingen te bieden voor communicatie over dit thema.
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Abstract Background: Frail older adults who are hospitalized, are more likely to experience missed nursing care (MNC) due to high care needs, communication problems, and complexity of nursing care. We conducted a qualitative study to examine the factors affecting MNC among hospitalized frail older adults in the medical units. Methods: This qualitative study was carried using the conventional content analysis approach in three teaching hospitals. Semi-structured interviews were conducted with 17 nurses through purposive and snowball sampling. The inclusion criteria for the nurses were: at least two years of clinical work experience on a medical ward, caring for frail older people in hospital and willingness to participate. Data were analyzed in accordance with the process described by Graneheim and Lundman. In addition, trustworthiness of the study was assessed using the criteria proposed by Lincoln and Guba. Results: In general, 20 interviews were conducted with nurses. A total of 1320 primary codes were extracted, which were classified into two main categories: MNC aggravating and moderating factors. Factors such as “age-unfriendly structure,” “inefficient care,” and “frailty of older adults” could increase the risk of MNC. In addition, factors such as “support capabilities” and “ethical and legal requirements” will moderate MNC. Conclusions: Hospitalized frail older adults are more at risk of MNC due to high care needs, communication problems, and nursing care complexity. Nursing managers can take practical steps to improve the quality of care by addressing the aggravating and moderating factors of MNC. In addition, nurses with a humanistic perspective who understand the multidimensional problems of frail older adults and pay attention to their weakness in expressing needs, can create a better experience for them in the hospital and improve patient safety.
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Background: Parents of children with profound intellectual and multiple disabilities (PIMD) have extensive care duties. This study describes the phenomenon “parenting a child with PIMD.” Method: We conducted in-depth interviews with 25 Dutch parents. A reflective lifeworld research. Findings: The essential meaning of the phenomenon was understood as “continuously struggling to create and maintain new equilibriums that protect the child and the family from hardship; changing in context through time.” The following eight constituents were identified: (1) medical complexity; (2) multidimensional weariness; (3) care for siblings; (4) social connectedness; (5) uncertainty about the future; (6) wrecking bureaucracy; (7) dependency on healthcare delivery; and (8) financial concerns. Conclusions: Healthcare services should provide families with easy access to assistive technology and services needed to manage family life. Responsiveness to parents’ challenges offers them the possibility to participate in society. Healthcare professionals should address the parents’ perspectives related to the child’s quality of life.
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Purpose: Collaborative deliberation comprises personal engagement, recognition of alternative actions, comparative learning, preference elicitation, and preference integration. Collaborative deliberation may be improved by assisting preference elicitation during shared decision-making. This study proposes a framework for preference elicitation to facilitate collaborative deliberation in long-term care consultations. Methods: First, a literature overview was conducted comprising current models for the elicitation of preferences in health and social care settings. The models were reviewed and compared. Second, qualitative research was applied to explore those issues that matter most to clients in long-term care. Data were collected from clients in long-term care, comprising 16 interviews, 3 focus groups, 79 client records, and 200 online client reports. The qualitative analysis followed a deductive approach. The results of the literature overview and qualitative research were combined. Results: Based on the literature overview, five overarching domains of preferences were described: “Health”, “Daily life”, “Family and friends”, ”Living conditions”, and “Finances”. The credibility of these domains was confirmed by qualitative data analysis. During interviews, clients addressed issues that matter in their lives, including a “click” with their care professional, safety, contact with loved ones, and assistance with daily structure and activities. These data were used to determine the content of the domains. Conclusion: A framework for preference elicitation in long-term care is proposed. This framework could be useful for clients and professionals in preference elicitation during collaborative deliberation.
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Background: In general people after stroke do not meet the recommendations for physical activity to conduct a healthy lifestyle. Programs to stimulate walking activity to increase physical activity are based on the available insights into barriers and facilitators to physical activity after stroke. However, these programs are not entirely successful. The purpose of this study was to comprehensively explore perceived barriers and facilitators to outdoor walking using a model of integrated biomedical and behavioral theory, the Physical Activity for people with a Disability model (PAD). Methods: Included were community dwelling respondents after stroke, classified ≥ 3 at the Functional Ambulation Categories (FAC), purposively sampled regarding the use of healthcare. The data was collected triangulating in a multi-methods approach, i.e. semi-structured, structured and focus-group interviews. A primarily deductive thematic content analysis using the PAD-model in a framework-analysis’ approach was conducted after verbatim transcription. Results: 36 respondents (FAC 3–5) participated in 16 semi-structured interviews, eight structured interviews and two focus-group interviews. The data from the interviews covered all domains of the PAD model. Intention, ability and opportunity determined outdoor walking activity. Personal factors determined the intention to walk outdoors, e.g. negative social influence, resulting from restrictive caregivers in the social environment, low self-efficacy influenced by physical environment, and also negative attitude towards physical activity. Walking ability was influenced by loss of balance and reduced walking distance and by impairments of motor control, cognition and aerobic capacity as well as fatigue. Opportunities arising from household responsibilities and lively social constructs facilitated outdoor walking. Conclusion: To stimulate outdoor walking activity, it seems important to influence the intention by addressing social influence, self-efficacy and attitude towards physical activity in the development of efficient interventions. At the same time, improvement of walking ability and creation of opportunity should be considered
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This report presents the highlights of the 7th European Meeting on Molecular Diagnostics held in Scheveningen, The Hague, The Netherlands, 12-14 October 2011. The areas covered included molecular diagnostics applications in medical microbiology, virology, pathology, hemato-oncology,clinical genetics and forensics. Novel real-time amplification approaches, novel diagnostic applications and new technologies, such as next-generation sequencing, PCR lectrospray-ionization TOF mass spectrometry and techniques based on the detection of proteins or other molecules, were discussed. Furthermore, diagnostic companies presented their future visions for molecular diagnostics in human healthcare.
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As migrant populations age, the care system is confronted with the question how to respond to care needs of an increasingly diverse population of older adults. We used qualitative intersectional analysis to examine differential preferences and experiences with care at the end of life of twenty-five patients and their relatives from Suriname, Morocco and Turkey living in The Netherlands. Our analysis focused on the question how–in light of impairment–ethnicity, religion and gender intersect to create differences in social position that shape preferences and experiences related to three main themes: place of care at the end of life; discussing prognosis, advance care, and end-of-life care; and, end-of-life decision-making. Our findings show that belonging to an ethnic or religious minority brings forth concerns about responsive care. In the nursing home, patients’ minority position and the interplay thereof with gender make it difficult for female patients to request and receive responsive care. Patients with a strong religious affiliation prefer to discuss diagnosis but not prognosis. These preferences are at interplay with factors related to socioeconomic status. The oversight of this variance hampers responsive care for patients and relatives. Preferences for discussion of medical aspects of care are subject to functional impairment and faith. Personal values and goals often remain unexpressed. Lastly, preferences regarding medical end-of-life decisions are foremost subject to religious affiliation and associated moral values. Respondents’ impairment and limited Dutch language proficiency requires their children to be involved in decision-making. Intersecting gendered care roles determine that mostly daughters are involved. Considering the interplay of aspects of social identity and their effect on social positioning, and pro-active enquiry into values, goals and preferences for end-of-life care of patients and their relatives are paramount to achieve person centred and family-oriented care responsive to the needs of diverse communities.
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Many students persistently misinterpret histograms. This calls for closer inspection of students’ strategies when interpreting histograms and case-value plots (which look similar but are diferent). Using students’ gaze data, we ask: How and how well do upper secondary pre-university school students estimate and compare arithmetic means of histograms and case-value plots? We designed four item types: two requiring mean estimation and two requiring means comparison. Analysis of gaze data of 50 students (15–19 years old) solving these items was triangulated with data from cued recall. We found five strategies. Two hypothesized most common strategies for estimating means were confirmed: a strategy associated with horizontal gazes and a strategy associated with vertical gazes. A third, new, count-and-compute strategy was found. Two more strategies emerged for comparing means that take specific features of the distribution into account. In about half of the histogram tasks, students used correct strategies. Surprisingly, when comparing two case-value plots, some students used distribution features that are only relevant for histograms, such as symmetry. As several incorrect strategies related to how and where the data and the distribution of these data are depicted in histograms, future interventions should aim at supporting students in understanding these concepts in histograms. A methodological advantage of eye-tracking data collection is that it reveals more details about students’ problem-solving processes than thinking-aloud protocols. We speculate that spatial gaze data can be re-used to substantiate ideas about the sensorimotor origin of learning mathematics.
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BACKGROUND: In geriatric oncology, family members frequently accompany patients during medical consultations, providing emotional and practical support while participating in shared decision-making (SDM). Family involvement in SDM can facilitate the decision-making process but also pose challenges for healthcare professionals. Additionally, much of the SDM deliberation occurs outside the clinical setting, making it important to understand family dynamics to ensure treatment decisions align with the patient's values and preferences. Therefore this study aims to explore the experiences and perspectives of family members regarding their involvement in decision-making processes for older patients with cancer, and the subsequent impact on roles and family dynamics.METHODS: Qualitative open in-depth interviews were conducted with 16 family members of 11 patients with cancer of 70 years and older in the Netherlands. Qualitative data analysis was conducted using a thematic analysis approach.RESULTS: Four interconnected themes emerged. The first theme, "Roles" revealed that family members often provide both practical and informational support, and sometimes act as advocates for the patient. The second theme, "Family Values and Beliefs," highlighted a strong sense of unconditional and reciprocal support within families, emphasizing the core value of caring for one another. Third, "Family Dynamics," encompasses: keeping everyone informed, dividing caregiver tasks, dealing with disappointment and sadness, managing different opinions, and coping with uncertainty. Finally, "Dilemma's" describes: family members balancing their own opinions with the patient's preferences, reconciling hope and fear, weighing trust in medical professionals against their own judgment, and balancing caregiving responsibilities with their personal lives. These dilemmas were shaped by roles the family members assumed, the underlying values and beliefs, and family dynamics.CONCLUSION: The findings of this interview study provide valuable insights into the complex roles that family members of older patients with cancer play in medical consultations and treatment decision-making and their dilemma's. These roles are deeply influenced by family values and dynamics, which can significantly shape decision-making processes and outcomes. Understanding these factors can help healthcare professionals as it highlights the evolving responsibilities of family caregivers and the importance of supporting them in navigating the intricacies of treatment decisions while maintaining respect for patient autonomy.
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