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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Background: This paper describes the Co-Care-KIT, a reflective toolkit designed to provide insights into the diverse experiences of home-based informal caregivers during the delivery of care to a relative or loved one.Objective: The aim of this study was to evaluate the toolkit, including a custom-designed journal, tools for photography-based experience sampling, and heart rate tracking, which enables caregivers to collect and reflect on their positive and negative daily experiences in situ.Methods: A 2-week field study with informal caregivers (N=7) was conducted to evaluate the Co-Care-KIT and to capture their daily personal emotional experiences. The collected data samples were analyzed and used for collaborative dialogue between theresearcher and caregiver.Results: The results suggest that the toolkit (1) increased caregivers’ awareness of their own well-being through in situ reflection on their experiences; (2) empowered caregivers to share their identities and experiences as a caregiver within their social networks; (3) enabled the capturing of particularly positive experiences; and (4) provided caregivers reassurance with regards to their ownmental health.Conclusion: By enabling capturing and collaborative reflection, the kit helped to gain a new understanding of caregivers’ day-to-day needs and emotional experiences.
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Introduction: The implementation of oncology care pathways that standardize organizational procedures has improved cancer care in recent years. However, the involvement of “authentic” patients and caregivers in quality improvement of these predetermined pathways is in its infancy, especially the scholarly reflection on this process. We, therefore, aim to explore the multidisciplinary challenges both in practice, when cancer patients, their caregivers, and a multidisciplinary team of professionals work together on quality improvement, as well as in our research team, in which a social scientist, health care professionals, health care researchers, and experience experts design a research project together. Methods and design: Experience-based co-design will be used to involve cancer patients and their caregivers in a qualitative research design. In-depth open discovery interviews with 12 colorectal cancer patients, 12 breast cancer patients, and seven patients with cancer-associated thrombosis and their caregivers, and focus group discussions with professionals from various disciplines will be conducted. During the subsequent prioritization events and various co-design quality improvement meetings, observational field notes will be made on the multidisciplinary challenges these participants face in the process of co-design, and evaluation interviews will be done afterwards. Similar data will be collected during the monthly meetings of our multidisciplinary research team. The data will be analyzed according to the constant comparative method. Discussion: This study may facilitate quality improvement programs in oncologic care pathways, by increasing our real-world knowledge about the challenges of involving “experience experts” together with a team of multidisciplinary professionals in the implementation process of quality improvement. Such co-creation might be challenging due to the traditional paternalistic relationship, actual disease-/treatment-related constraints, and a lack of shared language and culture between patients, caregivers, and professionals and between professionals from various disciplines. These challenges have to be met in order to establish equality, respect, team spirit, and eventual meaningful participation.
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Aim: To describe the extent of perceived collaboration between family caregivers of older persons and hospital nurses.Background: Collaboration between hospital nurses and family caregivers is of increasing importance in older patient’s care. Research lacks a specific focus on family caregiver’s collaboration with nurses.Method: Using a cross-sectional design, 302 caregivers of older patients (≥ 70 years) completed the 20-item Family Collaboration Scale with the subscales: trust in nursing care, accessible nurse, and influence on decisions. Date were analyzed with descriptive statistics and bivariate correlations.Results: Family caregivers rated their level of trust in nurses and nurses’ accessibility higher than the level of their influence on decisions. Family caregivers who had more contact with nurses perceived higher levels of influence on decisions (p ≤ .001) and overall collaboration (p ≤ .001).Conclusion: Family caregivers’ collaboration with nurses can be improved, especially in recognizing and exploiting family caregivers as partner in the care for older hospitalized persons and regarding their level of influence on decisions.Implications for Nursing Management: Insight into family caregivers’ collaboration with nurses will help nurse managers to jointlydevelop policy with nurses on how to organize more family caregiver’ involvement in the standard care for older persons.
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Background: Patient involvement in interprofessional education (IPE) is a new approach in fostering person-centeredness and collaborative competencies in undergraduate students. We developed the Patient As a Person (PAP-)module to facilitate students in learning from experts by experience (EBEs) living with chronic conditions, in an interprofessional setting. This study aimed to explore the experiences of undergraduate students, EBEs and facilitators with the PAP-module and formulate recommendations on the design and organization of patient involvement in IPE. Methods: We collected data from students, EBEs and facilitators, through eight semi-structured focus group interviews and two individual interviews (N = 51). The interviews took place at Maastricht University, Zuyd University of Applied Sciences and Regional Training Center Leeuwenborgh. Conventional content analysis revealed key themes. Results: Students reported that learning from EBEs in an interprofessional setting yielded a more comprehensive approach and made them empathize with EBEs. Facilitators found it challenging to address multiple demands from students from different backgrounds and diverse EBEs. EBEs were motivated to improve the personcentredness of health care and welcomed a renewed sense of purpose. Conclusions: This study yielded six recommendations: (a) students from various disciplines visit an EBE to foster a comprehensive approach, (b) groups of at least two students visit EBEs, (c) students may need aftercare for which facilitators should be receptive, (d) EBEs need clear instruction on their roles, (e) multiple EBEs in one session create diversity in perspectives and (f) training programmes and peer-to-peer sessions for facilitators help them to interact with diverse students and EBEs.
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BACKGROUND: Critical illness and the problems faced after ICU discharge do not only affect the patient, it also negatively impacts patients' informal caregivers. There is no review which summarizes all types of burden reported in informal caregivers of ICU survivors. It is important that the burdens these informal caregivers suffer are systematically assessed so the caregivers can receive the professional care they need. We aimed to provide a complete overview of the types of burdens reported in informal caregivers of adult ICU survivors, to make recommendations on which burdens should be assessed in this population, and which tools should be used to assess them.METHOD: We performed a systematic search in PubMed and CINAHL from database inception until June 2014. All articles reporting on burdens in informal caregivers of adult ICU survivors were included. Two independent reviewers used a standardized form to extract characteristics of informal caregivers, types of burdens and instruments used to assess these burdens. The quality of the included studies was assessed using the Newcastle-Ottawa and the PEDro scales.RESULTS: The search yielded 2704 articles, of which we included 28 in our review. The most commonly reported outcomes were psychosocial burden. Six months after ICU discharge, the prevalence of anxiety was between 15% and 24%, depression between 4.7% and 36.4% and post-traumatic stress disorder (PTSD) between 35% and 57.1%. Loss of employment, financial burden, lifestyle interference and low health-related quality of life (HRQoL) were also frequently reported. The most commonly used tools were the Hospital Anxiety and Depression Scale (HADS), Centre for Epidemiological Studies-Depression questionnaire, and Impact of Event Scale (IES). The quality of observational studies was low and of randomized studies moderate to fair.CONCLUSIONS: Informal caregivers of ICU survivors suffer a substantial variety of burdens. Although the quality of the included studies was poor, there is evidence that burden in the psychosocial field is most prevalent. We suggest screening informal caregivers of ICU survivors for anxiety, depression, PTSD, and HRQoL using respectively the HADS, IES and Short Form 36 and recommend a follow-up period of at least 6 months.
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Person-centered care interventions can improve the quality of life and decrease behavioral problems of people with dementia. Although not convincingly proven, person-centered care interventions may benefit the caregivers as well. This study aims to gain insight into how working with the Veder Contact Method (VCM) – a new person-centered care method – influences the job satisfaction of caregivers.
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Background: Online contacts with a health professional have the potential to support family caregivers of people with dementia. Objective: The goal of the research was to study the effects of an online self-management support intervention in helping family caregivers deal with behavior changes of a relative with dementia. The intervention—involving among others personal email contacts with a dementia nurse—was compared with online interventions without these email contacts. Methods: A randomized controlled trial was conducted with 81 family caregivers of people with dementia who live at home. Participants were randomly assigned to a (1) major self-management support intervention consisting of personal email contacts with a specialist dementia nurse, online videos, and e-bulletins; (2) medium intervention consisting only of online videos and e-bulletins; or (3) minor intervention consisting of only the e-bulletins. The primary outcome was family caregivers’ self-efficacy in dealing with behavior changes of the relative with dementia. Secondary outcomes were family caregivers’ reports of behavior problems in the people with dementia and the quality of the relationship between the family caregiver and the person with dementia. Measurements were performed at the baseline and at 6 (T1) and 12 weeks (T2) after the baseline. A mixed-model analysis was conducted to compare the outcomes of the 3 intervention arms. Results: Family caregivers participating in the major intervention involving email contacts showed no statistically significant differences in self-efficacy after the intervention compared with the minor intervention involving only e-bulletins (difference –0.02, P=.99). In the adjusted analysis, the medium intervention (involving videos and e-bulletins) showed a negative trend over http://www.jmir.org/2020/2/e13001/ J Med Internet Res 2020 | vol. 22 | iss. 2 | e13001 | p. 1 (page number not for citation purposes) JOURNAL OF MEDICAL INTERNET RESEARCH Huis in het Veld et al XSL•FO RenderX time (difference –4.21, P=.09) and at T1 (difference –4.71, P=.07) compared with the minor intervention involving only e-bulletins. No statistical differences were found between the intervention arms in terms of the reported behavior problems and the quality of the relationship between the family caregiver and the person with dementia. Conclusions: The expectation that an online self-management support intervention involving email contacts would lead to positive effects and be more effective than online interventions without personal email contacts was not borne out. One explanation might be related to the fact that not all family caregivers who were assigned to that intervention actually made use of the opportunity for personal email contact. The online videos were also not always viewed. To obtain more definite conclusions, future research involving extra efforts to reach higher use rates is required.
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This scoping review focuses on the views of informal caregivers regarding the division of care responsibilities between citizens, governments and professionals and the question of to what extent professionals take these views into account during collaboration with them. In Europe, the normative discourse on informal care has changed. Retreating governments and decreasing residential care increase the need to enhance the collaborationbetween informal caregivers and professionals. Professionals are assumedto adequately address the needs and wishes of informal caregivers, but little is known about informal caregivers’ views on the division of care responsibilities. We performed a scoping review and searched for relevant studies published between 2000 and September 1, 2016 in seven databases. Thirteen papers were included, all published in Western countries. Most included papers described research with a qualitative research design. Based on the opinion of informal caregivers, we conclude that professionals do not seem to explicitly take into account the views of informal caregivers about the division of responsibilities during their collaboration with them. Roles of the informal caregivers and professionals are not always discussed and the division of responsibilities sometimes seems unclear. Acknowledging the role and expertise of informalcaregivers seems to facilitate good collaboration, as well as attitudes such as professionals being open and honest, proactive and compassionate. Inflexible structures and services hinder good collaboration. Asking informal caregivers what their opinion is about the division of responsibilities could improve clarity about the care that is given by both informal caregivers and professionals and could improve their collaboration. Educational programs in social work, health and allied health professions should put more emphasis on this specific characteristic of collaboration.
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Abstract: Technological innovation in the healthcare sector is increasing, but integration of information technology (IT) in the care process is difficult. Healthcare workers are important agents in this IT integration. The purpose of this study is to explore factors that feed motivation to use IT. Self-determination theory (SDT) is applied to study how motivational factors impact effective IT use among frontline caregivers in residential care settings. As the team is very important to these caregivers, the team is our unit of analysis. In an embedded single case study design, interviews were conducted with all nine members of a team effectively using IT. All three basic psychological needs from SDT - autonomy, competence and relatedness - were found to have impact on effective IT use, though autonomy was primarily experienced at team level. Conversely, the effective use of an IT collaboration tool influences relatedness.
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