Purpose: Providing an overview of studies on family participation in physiotherapy-related tasks of critically ill patients, addressing two research questions (RQ): 1) What are the perceptions of patients, relatives, and staff about family participation in physiotherapy-related tasks? and 2) What are the effects of interventions of family participation in physiotherapy-related tasks? Material and methods: Qualitative, quantitative and mixed-methods articles were identified using PubMed, Embase and CINAHL. Studies reporting on family participation in physiotherapy-related tasks of adult critically ill patients were included. A convergent segregated approach for mixed-methods reviews was used. Results: Eighteen articles were included; 13 for RQ1, and 5 for RQ2. The included studies were quantitative, qualitative and mixed-method, including between 8 and 452 participants. The descriptive studies exhibit a general appreciation for involvement of relatives in physiotherapy-related tasks, although most of the studies reported on family involvement in general care and incorporated diverse physiotherapy-related tasks. One study explored the effectiveness of family participation on a rehabilitation outcome and showed that the percentage of patients mobilizing three times a day increased. Conclusion: Positive attitudes were observed among patients, their relatives and staff towards family participation in physiotherapy-related tasks of critically ill patients. However, limited research has been done into the effect of interventions containing family participation in physiotherapy-related tasks.
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OBJECTIVE: We designed a Patient and Family Participation Education Program (PFEP) with the aim of fostering a positive attitude and enhancing the competencies of hospital nurses required for effective patient and family participation in care.METHODS: In a Dutch university hospital, we conducted a before-after study. The PFEP comprising three courses: family conversation, supporting shared decision-making, and health literacy. We assessed nursing attitudes using the FINC-NA questionnaire and competencies with a separate questionnaire before and three months after the program. Changes in attitudes and competencies were analyzed using regression analysis.RESULTS: Twenty-two nurses participated in the education group, and 58 participated as controls.After three months, the change scores for the education group were statistically significantly higher on the total attitude score (FINC-NA) compared to the control group. Moreover, in six out of twelve competencies, the education group demonstrated significantly higher scores than the control group.CONCLUSION: The educational program appeared effective in promoting nurses' attitudes and feelings of competencies towards patient and family-centered care.INNOVATION: A blended education program focusing on patient and family has potential value for implementation in hospital care settings, especially for hospitals aiming to cultivate a more patient- and family-centered environment.
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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.
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Parental involvement is a crucial force in children’s development, learning and success at school and in life [1]. Participation, defined by the World Health Organization as ‘a person’s involvement in life situations’ [2] for children means involvement in everyday activities, such as recreational, leisure, school and household activities [3]. Several authors use the term social participation emphasising the importance of engagement in social situations [4, 5]. Children’s participation in daily life is vital for healthy development, social and physical competencies, social-emotional well-being, sense of meaning and purpose in life [6]. Through participation in different social contexts, children gather the knowledge and skills needed to interact, play, work, and live with other people [4, 7, 8]. Unfortunately, research shows that children with a physical disability are at risk of lower participation in everyday activities [9]; they participate less frequently in almost all activities compared with children without physical disabilities [10, 11], have fewer friends and often feel socially isolated [12-14]. Parents, in particular, positively influence the participation of their children with a physical disability at school, at home and in the community [15]. They undertake many actions to improve their child’s participation in daily life [15, 16]. However, little information is available about what parents of children with a physical disability do to enable their child’s participation, what they come across and what kind of needs they have. The overall aim of this thesis was to investigate parents’ actions, challenges, and needs while enhancing the participation of their school-aged child with a physical disability. In order to achieve this aim, two steps have been made. In the first step, the literature has been examined to explore the topic of this thesis (actions, challenges and needs) and to clarify definitions for the concepts of participation and social participation. Second, for the purposes of giving breadth and depth of understanding of the topic of this thesis a mixed methods approach using three different empirical research methods [17-19], was applied to gather information from parents regarding their actions, challenges and needs.
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ObjectiveWe designed a Patient and Family Participation Education Program (PFEP) with the aim of fostering a positive attitude and enhancing the competencies of hospital nurses required for effective patient and family participation in care.MethodsIn a Dutch university hospital, we conducted a before-after study. The PFEP comprising three courses: family conversation, supporting shared decision-making, and health literacy. We assessed nursing attitudes using the FINC-NA questionnaire and competencies with a separate questionnaire before and three months after the program. Changes in attitudes and competencies were analyzed using regression analysis.ResultsTwenty-two nurses participated in the education group, and 58 participated as controls.After three months, the change scores for the education group were statistically significantly higher on the total attitude score (FINC-NA) compared to the control group. Moreover, in six out of twelve competencies, the education group demonstrated significantly higher scores than the control group.ConclusionThe educational program appeared effective in promoting nurses' attitudes and feelings of competencies towards patient and family-centered care.InnovationA blended education program focusing on patient and family has potential value for implementation in hospital care settings, especially for hospitals aiming to cultivate a more patient- and family-centered environment.
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Background: Medical consultations with older patients often include triadic conversations and decision-making processes involving physicians, patients, and family members. The presence of family members may change the communication dynamics and therefore increase the complexity of the consultation and decision-making process. Objective: This study explored associations between physicians' shared decision-making (SDM) behaviour and patients' and family members' participation in the decision-making process. Methods: Using an observational design, we analysed 95 recorded consultations between medical specialists, patients aged ≥65 years, and accompanying family members at a Dutch hospital. The OPTIONMCC was used to assess the physicians' SDM behaviour and patients' and family members' levels of involvement in SDM. Results: We found a strong positive correlation between physicians' behaviour and patients' and family members' participation in SDM (0.68 and 0.64, respectively, p < .01). Family members were more involved in SDM for patients aged 80 and older. Conclusion: While not asserting causation, our study suggests physicians potentially play a facilitating role in shaping the SDM process together with proactive contributions from patients and family members. Innovation: The results offer new insights into triadic SDM and provide suggestions for refining the OPTIONMCC. Further research is recommended into participants' mutual directional influences in triadic SDM.
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This article describes a European project which was aimed at improving the situation of persons with psychiatric or learning disabilities with regard to social participation and citizenship. The project took place in three countries (Estonia, Hungary and the Netherlands) and four cities (Tallinn, Budapest, Amersfoort and Maastricht). The project included research and actions at the policy level, the organizational level and the practice level. At the policy level, the framework of the United Nations Convention on the Rights of Persons with Disabilities (United Nations, 2006) and the European Disability Strategy (European Commission, 2010) were used to look at national and local policies, at the reality of the lives of those with disabilities and at the support that professional services offer with regard to participation and inclusion. The project generated a number of insights, recommendations and methods by which to improve the quality of services and increase the number of opportunities for community engagement. In this article, we present some of the lessons learned from the meta-analysis. Although the circumstances in each country are quite different with regard to policy, culture and service systems, it is remarkable that people with disabilities face many of the same problems. The study shows that in all three countries, access to services could be improved. Barriers include bureaucratic procedures and a lack of services. The research identified that in every country and city there are considerable barriers regarding equal participation in the field of housing, work and leisure activities. In addition to financial barriers, there are the barriers of stigma and self-stigmatization. Marginalization keeps people in an unequal position and hinders their recovery and participation. In all countries, professionals need to develop a stronger focus on supporting the participation of their clients in public life and in the development of different roles pertaining to citizenship
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Purpose: As recovery time after oncological surgery can be long, family caregivers often play an important role in the delivery of care after patients’ discharge. To prepare carers for this role, we developed a family involvement program (FIP) to enhance their active involvement in post-surgical oncology care during hospitalization. The purpose of this qualitative study was to explore family caregivers experience of participating in a FIP. Methods: We conducted semi-structured interviews with 12 family caregivers who participated in the family involvement program. The program is comprised of two main components (1) training and coaching of physicians and nurses; (2) active involvement of family caregivers in fundamental care activities. This active involvement included six activities. Data were analyzed using interpretative phenomenological analysis. Results: Family caregivers positively valued the program. Active participation in post-surgical care was experienced as an acceptable burden. The program gave participants the ability to simply be present (‘being there’) which was considered as essential and improved their understanding of care, although family caregivers sometimes experienced emotional moments. Active involvement strengthened existent relationship between the family caregiver and the patient. Participants thought clinical supervision. by nurses is important. Conclusions: Physical proximity appeared as an essential part of the family involvement program. It helped carers to feel they made a meaningful contribution to their loved ones’ wellbeing. Asking families to participate in fundamental care activities in post-surgical oncology care was acceptable, and not over-demanding for caregivers.
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Aim: Participation of adolescents with autism spectrum disorder hardly occurs in settings outside of home and school. Little is known about how their participation is influenced by environmental factors. This study explored how and why adolescents with autism spectrum disorder perceive aspects of their environment as facilitators or barriers to their participation outside of home and school. Method: This explanatory case study explored the participation experiences of adolescents with autism spectrum disorder (15–21 years) from Zurich and surroundings with in-depth interviews and photo-elicitation, using photos made by the participants during activities outside of home and school. Data was analysed with a 7-step procedure. Result: The presence of two main themes seemed necessary to facilitate participation outside of home and school: “environmental prerequisites to attend activities”, which consists of five subthemes, such as “the company of trusted persons” and “the provision of knowledge and information”, and “social interchange and engagement”, which consists of three subthemes and describes how actual involvement can be supported. Conclusion: Our findings highlight the influence of trusted persons on adolescents with autism spectrum disorder, and the need to extend the support network for these adolescents to other individuals, services and society so that their participation in activities can be encouraged.
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AIM To examine which instruments used to assess participation of children with acquired brain injury (ABI) or cerebral palsy (CP) align with attendance and/or involvement constructs of participation; and to systematically review measurement properties of these instruments in children with ABI or CP, to guide instrument selection. METHOD Five databases were searched. Instruments that quantified ‘attendance’ and/or ‘involvement’ aspects of participation according to the family of participation-related constructs were selected. Data on measurement properties were extracted and methodological quality of the studies assessed. RESULTS Thirty-seven instruments were used to assess participation in children with ABI or CP. Of those, 12 measured attendance and/or involvement. The reliability, validity, and responsiveness of eight of these instruments were examined in 14 studies with children with ABI or CP. Sufficient measurement properties were reported for most of the measures, but no instrument had been assessed on all relevant properties. Moreover, most psychometric studies have marked methodological limitations. INTERPRETATION Instruments to assess participation of children with ABI or CP should be selected carefully, as many available measures do not align with attendance and/or involvement. Evidence for measurement properties is limited, mainly caused by low methodological study quality. Future studies should follow recommended methodological guidelines.
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