Purpose: To support family caregivers of persons post-stroke adequately from the start and to develop self-management interventions, we aim to gain a better understanding of family caregivers experiences at the time of acute care and therefore achieve a better understanding of how they manage their new situation. Methods and Materials: We chose a qualitative descriptive methodology using individual semi-structured interviews with eleven family caregivers of persons post-stroke. We conducted interviews retrospectively, between 2 and 10 months post-stroke, and analysed transcripts using thematic analysis. Results: The themes (1) being in survival mode, (2) feeling supported by family and friends, (3) feeling left alone by the treatment team and (4) insisting on information emerged from the data. Conclusion: During acute care, many self-management skills are required from family caregivers but are just starting to be developed. This development can first be observed as co-management with the social network and is often combined with shared decision-making. Information-sharing, foundational for developing self-management, is essential for family caregivers and should be supported proactively by health professionals from the beginning. Further, from the start, health professionals should raise awareness about role changes and imbalances of activities among family caregivers to prevent negative influences on their health.
Family nursing conversations (FNC) are planned conversations between a care recipient, one or more family members, and a nurse. FNC, in the Netherlands, are intended to strengthen family functioning and family communication, improve collaboration between family and professional caregivers, and prevent overburden of family caregivers. This study aims to explore families’ experiences with FNC, and their perspectives on the benefits of FNC.Methods: A total of 26 participants (9 care recipients, 17 family members) from 11 families participated in a FNC and this qualitative study. Seven home health care nurses trained in FNC conducted these conversations as part of their daily practice. Four to six weeks after the FNC, care recipients and family members were interviewed about their experiences, and the perceived effects or benefits of the FNC. Interviews were semi-structured, face-to-face, and individual. Data collection continued until saturation had been reached. A grounded theory approach was used to analyze the data.Results: Participants experienced FNC as structured and open communication about the care situation. During the FNC, participants felt that they gained a clear overview of the care situation and that relationships among the FNC-participants improved. Participants reported that FNC decreased family members’ burden, and resulted in care that was more tailored to the care recipient’s needs.Conclusions: From the results of this study a model is proposed for families’ experiences with and perceived benefits of FNC. In a subsequent study, this model will be tested in a quantitative cost effectiveness study with a larger sample.
LINK
Background: Involvement of families in physiotherapy-related tasks of critically ill patients could be beneficial for both patients and their family. Before designing an intervention regarding family participation in the physiotherapy-related care of critically ill patients, there is a need to investigate the opinions of critically ill patients, their family and staff members in detail. Objective: Exploring the perceptions of critically ill patients, their family and staff members regarding family participation in physiotherapy-related tasks of critically ill patients and the future intervention. Methods: A multicenter study with a qualitative design is presented. Semistructured interviews were conducted with critically ill patients, family and intensive care staff members, until theoretical saturation was reached. The conventional content method was used for data analyses. Results: Altogether 18 interviews were conducted between May 2019 and February 2020. In total, 22 participants were interviewed: four patients, five family members, and 13 ICU staff members. Six themes emerged: 1) prerequisites for family participation (e.g., permission and capability); 2) timing and interactive aspects of engaging family (e.g., communication); 3) eligibility of patients and family (e.g., first-degree relatives and spouses, and long stay patients); 4) suitability of physiotherapyrelated tasks for family (e.g., passive, active and breathing exercises); 5) expected effects (e.g., physical recovery and psychological wellbeing); and 6) barriers and facilitators, which may affect the feasibility (e.g., safety, privacy, and responsibility). Conclusion: Patients, family members and staff members supported the idea of increased family participation in physiotherapy-related tasks and suggested components of an intervention. These findings are necessary to further design and investigate family participation in physiotherapyrelated tasks.
LINK
Everyone has the right to participate in society to the best of their ability. This right also applies to people with a visual impairment, in combination with a severe or profound intellectual and possibly motor disability (VISPIMD). However, due to their limitations, for their participation these people are often highly dependent on those around them, such as family members andhealthcare professionals. They determine how people with VISPIMD participate and to what extent. To optimize this support, they must have a good understanding of what people with disabilities can still do with their remaining vision.It is currently difficult to gain insight into the visual abilities of people with disabilities, especially those with VISPIMD. As a professional said, "Everything we can think of or develop to assess the functional vision of this vulnerable group will help improve our understanding and thus our ability to support them. Now, we are more or less guessing about what they can see.Moreover, what little we know about their vision is hard to communicate to other professionals”. Therefore, there is a need for methods that can provide insight into the functional vision of people with VISPIMD, in order to predict their options in daily life situations. This is crucial knowledge to ensure that these people can participate in society to their fullest extent.What makes it so difficult to get this insight at the moment? Visual impairments can be caused by a range of eye or brain disorders and can manifest in various ways. While we understand fairly well how low vision affects a person's abilities on relatively simple visual tasks, it is much more difficult to predict this in more complex dynamic everyday situations such asfinding your way or moving around during daily activities. This is because, among other things, conventional ophthalmic tests provide little information about what people can do with their remaining vision in everyday life (i.e., their functional vision).An additional problem in assessing vision in people with intellectual disabilities is that many conventional tests are difficult to perform or are too fatiguing, resulting in either no or the wrong information. In addition to their visual impairment, there is also a very serious intellectual disability (possibly combined with a motor impairment), which makes it even more complex to assesstheir functional vision. Due to the interplay between their visual, intellectual, and motor disabilities, it is almost impossible to determine whether persons are unable to perform an activity because they do not see it, do not notice it, do not understand it, cannot communicate about it, or are not able to move their head towards the stimulus due to motor disabilities.Although an expert professional can make a reasonable estimate of the functional possibilities through long-term and careful observation, the time and correct measurement data are usually lacking to find out the required information. So far, it is insufficiently clear what people with VZEVMB provoke to see and what they see exactly.Our goal with this project is to improve the understanding of the visual capabilities of people with VISPIMD. This then makes it possible to also improve the support for participation of the target group. We want to achieve this goal by developing and, in pilot form, testing a new combination of measurement and analysis methods - primarily based on eye movement registration -to determine the functional vision of people with VISPIMD. Our goal is to systematically determine what someone is responding to (“what”), where it may be (“where”), and how much time that response will take (“when”). When developing methods, we take the possibilities and preferences of the person in question as a starting point in relation to the technological possibilities.Because existing technological methods were originally developed for a different purpose, this partly requires adaptation to the possibilities of the target group.The concrete end product of our pilot will be a manual with an overview of available technological methods (as well as the methods themselves) for assessing functional vision, linked to the specific characteristics of the target group in the cognitive, motor area: 'Given that a client has this (estimated) combination of limitations (cognitive, motor and attention, time in whichsomeone can concentrate), the order of assessments is as follows:' followed by a description of the methods. We will also report on our findings in a workshop for professionals, a Dutch-language article and at least two scientific articles. This project is executed in the line: “I am seen; with all my strengths and limitations”. During the project, we closely collaborate with relevant stakeholders, i.e. the professionals with specific expertise working with the target group, family members of the persons with VISPIMD, and persons experiencing a visual impairment (‘experience experts’).
We willen de kwaliteit van onderzoek in de kunsten graag verhogen. Hiervoor is het belangrijk dat het ontwerpen van onderzoek op een manier benaderd wordt die zowel de onderzoekers ten goede komt en hun proces faciliteert, als ook dit proces van onderzoek ontwerpen en uitvoeren navolgbaar kan maken. Het doel van het project is dus expliciet niet om verschillende benaderingen samen te brengen in één manier van onderzoek, maar juist om een gedeelde visie te creëren over het ontwerp van onderzoeksmethodologie. Hiermee streven we naar een hoge kwaliteit van onderzoeksprocessen, uitkomsten en impact.Het onderzoeksproject Common Ground bestond uit vier elkaar overlappende fasen:Conceptueel, ethische en filosofische kaderingOntwikkeling van het methodologisch modelKennisdeling en verspreidingInbedding in het onderzoek van HKUHet onderzoek is op verschillende manieren uitgevoerd. Er werd onder meer gebruik gemaakt van gesprekken en interviews, observatie, theoretische reflectie en inbreng uit de onderwijs- en begeleidingspraktijk en de artistieke onderzoekspraktijk.Zie voor meer informatie de HKU-website over dit project.
Significant Others, family care, substance abuse, addiction, substance use disorder, Concerned significant others of a person with substance use disorder face psychological, social and financial problems caused by the subtance abuse of their loved one. Tradionally health care orginizations focus on the person with substance use disorder and pay less attention to their concerned significant other. In the Netherlands there is less information available about concerned significant others of persons with substance abuse. To develop a family care aproach for the significant other it's necessary to provide insight in the charasteristics of the concerned significant others of persons with substance use disorder.
