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This study explores the link between management characteristics of home care agencies and the involvement of informal caregiver in caregiving. Based on a study of policy documents of two agencies and semi-structured interviews with five team managers and 31 formal caregivers, we conclude that, although the importance of involving informal caregiver...
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One of the primary objectives of health systems is to provide a fair system by providing a comprehensive and holistic approach to caregiving rather than focusing on a single aspect of a person's care needs. This approach is often embodied by using standardized care assessments across health and social care settings. These assessments are completed...
Background
Care for activities of daily living (ADL) performed by nursing professionals is poorly informed by scientific evidence. To address the nursing professionals’ need for guidance, we developed a clinical practice guideline on ADL care. This guideline comprises key recommendations (KRs) on involving care receivers and informal caregivers in...
Background:
It is highly important for healthcare professionals to give discharge education to families to increase their knowledge of gastrostomy care and complications and to inform them about the correct behaviors. The purpose of the present descriptive pretraining and posttraining evaluation study was to investigate the effects of a standardiz...
Citations
... [2][3][4] Children with IDDs rely on their caregivers, who can be categorized as formal and family caregivers. 5,6 Among informal caregivers, mothers play a particularly crucial role in supporting children with disabilities. 7 Maintaining long-term motivation in mothers caring for children with IDDs is vital. ...
Background: Caring a child with intellectual and developmental disabilities (IDDs) presents numerous challenges that can impact the mothers’ caring motivation. This study aimed to explore the caring motivation barriers among mothers of children with IDDs.
Methods: This qualitative content analysis study was conducted from July 2023 to March 2024. Twenty-six mothers of children with IDDs were purposefully selected to participate in face-to-face semi-structured interviews. Data collection continued until saturation was achieved. Data analysis was conducted using Mayring’s inductive approach within MAXQDA version 20. We utilized Lincoln and Guba’s criteria for ensuring rigor.
Results: The mean ages of the mothers and children were 40.34±7.44 years and 9.38±4.33 years, respectively. The analysis identified several main categories and 15 subcategories: (I) Mother’s insufficient readiness: low level of competency, decreased maternal strength with child’s advancing age, caregiving fatigue, complex health problems, and incompatibility with the child’s disability; (II) Perceived lack of support for the mother in caregiving: insufficient family support, inadequate social support, deficient healthcare provider support, lack of spiritual support, and insufficient financial support; and (III) Encountering caring complexity: disappointment with the child’s recovery, challenges in providing optimal rehabilitation, multiple physical problems in the child, unintentional behaviors in the child, and priority of personal goals over the care.
Conclusion: The motivation of mothers to care for children with IDDs is influenced by a range of challenges. Future research should take these barriers into account to enhance maternal caregiving motivation. To modify the identified obstacles, a comprehensive plan of actions should be devised.
... However, previous studies have shown that family caregivers are seldom involved in reablement or are insufficiently supported throughout the process, often resulting in a higher experienced burden. [13][14][15][16] When involved, they often lack the right information and advice while providing care for their relative. 13,14 Moreover, family caregivers expressed a wish for more support and recognition of their needs (eg a break from providing care). ...
Background
Reablement is a person-centered, holistic approach promoting older adults’ participation through social, leisure, and physical activities. Family caregivers are seldom involved in reablement services despite their wish to be an active member of the care team and expressing a need for more support and recognition. The voice of family caregivers is often forgotten when evaluating services such as reablement. Little is known how family caregivers can be involved and supported more effectively in reablement services, therefore the aim of our research is to investigate the perceived support and involvement of family caregivers.
Methods
As part of the TRANS-SENIOR project, we studied perceived support and involvement of family caregivers during and after geriatric rehabilitation, a setting in which principles of reablement, like goal setting and training of daily activities, are applied. In total, fourteen semi-structured interviews were conducted with family caregivers of people admitted to a geriatric rehabilitation facility. Thematic analysis was used.
Results
Results reflected four themes: (1) support for family caregivers, (2) involvement in care, (3) trusting care professionals, and (4) asking for and accepting support. Family caregivers’ experiences with support from care professionals were mainly ambivalent. While caregivers expressing a lack of support and information whilst also indicating that they do not expect to be supported by care professionals. Regarding involvement, caregivers wanted to be involved; ie express their opinion and be involved in decision-making. However, more involvement could also lead to a higher burden.
Conclusion
There is a discrepancy between the perceived support and involvement of family caregivers, their expressed needs, and their expectations of care professionals. A personalized approach is needed to create room for the family caregiver to be an active participant in the care process while also providing the right amount of support, when preferred by the caregiver.
... For instance, older adults who were more likely to receive formal care were more psychologically frail than expected (Lambotte et al., 2018). The above discussion showed there are pros and cons of both formal and informal care, and informal and formal caregiving experience should be shared, communicated, and supplemented (Clark et al., 2014;van Wieringen et al., 2015). ...
Objective
This study reports the evaluation of the original 31-item Quality of Dying and Death Questionnaire (QODD) using a sample of caregivers of recently deceased older adults in China, and the validation of a shortened version (QODD-C) derived from the original scale.
Methods
The translation was performed using a forward and back method. The full scale was tested with 212 caregivers of decedents in four regions of China. Confirmatory factor analysis tested the model fit between the full Chinese version and the original conceptual model and generated the QODD-C. The psychometric analysis was performed to evaluate the QODD-C's internal consistency, content validity, construct validity, and discriminant validity.
Results
A five-domain, 18-item QODD-C was identified with excellent internal consistency reliability (Cronbach's α = 0.933; split-half Pearson's value = 0.855). The QODD-C total score was significantly associated with constructs related to five domains. The caregiver's relationship with the decedent, the decedent's age at death, death reason, and death place was significantly associated with the QODD-C total score.
Significance of results
The QODD-C is a valid and reliable instrument for assessing the quality of dying and death among the Chinese populations.
... In accordance with the literature we, therefore, showed that important multipliers, like (family) doctors [50], need to be gained to promote the usage of new technology. Unfortunately, many professional caregivers don't see the necessity to communicate with informal caregivers on a frequent basis [51], thus have no motivation to promote technology usage and see the caring relatives responsible for the initiation. ...
As more and more people reach high age the need for care, especially at home, rises. Caring involves the coordination of a wide variety of actors. Modern information and communication technologies (ICT) may improve care coordination and thus relieve all actors involved in outpatient care.
... Within individual care trajectories, actors face a similar diversity. For example, while 'the importance of involving informal caregivers is emphasized in official documentation' [62], in practice it is considerably less clear-cut who these informal caregivers are and with what they can or may want to be engaged. The category of 'informal caregivers' is not only extremely diverse, but informal caregiving networks may also be unstable and evolve in unexpected ways [44,63]. ...
Policy makers, practitioners and academics often claim that care users and other citizens should be ‘at the center’ of care integration pursuits. Nonetheless, the field of integrated care tends to approach these constituents as passive recipients of professional and managerial efforts. This paper critically reflects on this discrepancy, which, we contend, indicates both a key objective and an ongoing challenge of care integration; i.e., the need to reconcile (1) the professional, organizational and institutional frameworks by which care work is structured with (2) the diversity and diffuseness that is inherent to pursuits of active user and citizen participation. By identifying four organizational tensions that result from this challenge, we raise questions about whose knowledge counts (lay/professional), who is in control (local/central), who participates (inclusion/exclusion) and whose interests matter (civic/organizational). By making explicit what so often remains obscured in the literature, we enable actors to more effectively address these tensions in their pursuits of care integration. In turn, we are able to generate a more realistic outlook on the opportunities, limitations and pitfalls of citizen participation.
... In addition, it is increasingly expected that they integrate informal caregiver involvement in formal work processes. Results of a study of 2 agencies and their clients in the Netherlands [20] show that the nurses were aware of the organizational policy which stated that they should proactively keep connected with informal caregivers, yet most of them acknowledged that they hardly ever did so. The main reasons were lack of time, too little initiative from the informal carer, and no clarity on which team member is responsible and accountable for the informal caregiver involvement. ...
Background: Collaboration among informal and formal caregivers in a mixed care network of home-dwelling elderly may benefit from using a groupware app for digital networked communication (DNC).
... In addition, it is increasingly expected that they integrate informal caregiver involvement in formal work processes. Results of a study of two agencies and their clients in the Netherlands [20] show that the nurses were aware of the organizational policy which stated that they should proactively keep connected with informal caregivers, yet most of them acknowledged that they hardly ever did so. The main reasons were lack of time, too little initiative from the informal carer and no clarity on which team member is responsible and accountable for the informal caregiver involvement. ...
... Integrated care for frail elderly people typically involves a more active role of informal caregivers in the planning and delivery of care (Lopez-Hartmann, Wens, Verhoeven, & Remmen, 2012). More frequent interactions between formal and informal care are assumed to foster the trusting relationship needed to "renegotiate" the division of care activities (Van Wieringen et al., 2015;Ward-Griffin, 2001). Ideally, a new configuration of tasks emerges that is more in accordance with the needs, abilities and preferences of the frail elderly and informal caregivers. ...
... The EASYcare instrument that was used to assess the elderly patients' needs also includes an assessment of informal caregiver needs and burden, the results of which are included in the elderly patient's care plan (Melis et al., 2008 manager (Janse, Huijsman, de Kuyper, & Fabbricotti, 2014). Indeed, such explicit discussions of care activities have been argued to be essential to achieving a distribution of tasks that is more in line with the actual care situation (Jacobs et al., 2014(Jacobs et al., , 2015Van Wieringen et al., 2015). ...
Trial registration:
Current Controlled Trials ISRNT05748494.
... Other studies show that self-management skills in chronic disease can be profitable for overall health outcomes (3,11). When the need for care is relatively trivial, there are fewer complications in the formal care as well as for family members (31). Adequate patient self-management skills, for example the patient being able to participate in regulating his/her own blood glucose, contribute to a low need of attention from family members. ...
... Family caregivers provide a wide range of assistance to the old person (31,34), and for the participants in the present study, diabetes self-management was described as involving the measuring of blood glucose level, administering insulin and tablets, and reminding the old person of the importance of eating when blood glucose levels decreased. That family members assist with daily management is rather common (7). ...
... The competence in evaluating how other types of illness can influence blood glucose and when it is important for an older person with diabetes to have increased supervision around health issues because of inadequate blood glucose control, are basic competences that were sometimes lacking among formal caregivers. When the need for care becomes demanding, formal carers and family members need to interact to a greater extent (31). Such interaction should be encouraged by the home care personnel. ...
Aim:
To describe family members' experiences of attending to an old person with diabetes receiving home care services, including their interaction with the formal caregivers.
Methods and results:
The study has a qualitative descriptive design. From May to August 2015, eight family members were interviewed. Interviews were analysed using qualitative content analysis. To describe family members' experiences, the following four themes were identified: Security through patients' self-management skills and diabetes knowledge; Perceived burden due to the old persons' deteriorated health; Security through competent home care services; and Doubt due to personnel's inadequate approach and interaction.
Conclusion:
It is important for personnel in home care services to consider patients' self-management skills and the family members' diabetes knowledge as key aspects in order to limit experiences of burden when the older person with diabetes has deteriorating health. The findings underscore that interaction with home care personnel skilled in managing diabetes helps family members feel secure.
... 7,8 Although the importance of involving informal caregivers is highlighted in official documents, research points out that health care professionals contact and collaboration with informal caregivers is often lacking. [10][11][12][13][14] In the study of van Wieringen et al, 10 "professionals generally regard caregivers as 'coworkers' because both parties perform comparable tasks". However, informal caregivers do not feel like coworkers because they are hardly involved in the decision-making about care. ...
... 7,8 Although the importance of involving informal caregivers is highlighted in official documents, research points out that health care professionals contact and collaboration with informal caregivers is often lacking. [10][11][12][13][14] In the study of van Wieringen et al, 10 "professionals generally regard caregivers as 'coworkers' because both parties perform comparable tasks". However, informal caregivers do not feel like coworkers because they are hardly involved in the decision-making about care. ...
... However, informal caregivers do not feel like coworkers because they are hardly involved in the decision-making about care. Moreover, van Wieringen et al 10 argue that caregivers can experience a lack of sympathy and support from professionals. This usually results from the limited knowledge that professionals have of caregivers' needs and attitudes toward care. ...
Background
Reablement is an early and time-limited home-based model of rehabilitation intervention with an emphasis on intensive, goal-oriented, and multidisciplinary assistance for persons experiencing functional decline. When rehabilitation in general takes place in the person’s own home, in contrast to an institution, relatives may have larger responsibilities in helping and supporting the family member. Although there is evidence, showing that family caregivers, such as spouses and children, experience burdens and demanding situations related to their caregiving role, there are currently few publications exploring relatives’ experiences of participating in reablement. The aim of our study was to explore and describe how relatives in a community setting in Norway experienced participation in the reablement process.
Methods
Six relatives participated in semi-structured interviews. Qualitative systematic text condensation was used as the analysis strategy.
Results
Five themes emerged that summarized the relatives’ experiences with reablement: 1) a wish to give and receive information, wish to be involved; 2) wish to be a resource in reablement process; 3) conflicting expectations; 4) have more free time to themselves; and 5) a lack of follow-up programs.
Conclusion
Our findings highlight the involvement and collaborative process between health professionals, older adults, and relatives and have practical significance for health care services. To advance collaborative practices, the municipal health and social care services should consider establishing a system or a routine to foster this collaboration in reablement. Follow-up programs should be included.
