The Caregiving Health Engagement Scale (CHE-s): development and initial validation of a new questionnaire for measuring family caregiver engagement in healthcare
Abstract:BackgroundThis study was aimed to preliminary validate a cross-disease psychometric measure to assess the psycho-social experience of family caregiver engagement in healthcare (Caregiving Health Engagement Scale, CHE-s), which refers to the caregiver’s psychological attitude to be an active, skilled and motivated player in the care process of their loved ones.MethodThe study consisted of a mixed methods, multi-stage research. First, a preliminary qualitative stage was aimed at investigating – in the caregivers… Show more
“…Engagement—the second key domain identified in the previous phases—was operationalized throughout the adoption of specific engagement-related scales retrieved from the scientific literature and demonstrated to be reliable for assessing the level of engagement of the different stakeholders involved in the healthcare process [i.e., Patient Health Engagement Scale (PHE-S®) ( 46 ); Caregiving Health Engagement Scale (CHE-s) ( 47 ); Utrecht work engagement scale ( 48 )].…”
Background: Engaging patients in raising their voices to advocate for their priorities being taken into account is today acknowledged as essential to improve research and decision-making in healthcare. However, literature is scarce regarding an evaluation framework to monitor the extent to which this approach is successful, in particular in mental health, where the application of patient-reported outcome measures (PROMs) is particularly difficult. In this study, we describe the process of development and first implementation of a new assessment framework-"Co-production Compass" (COCO) framework-for monitoring patient preference collection in co-production of healthcare services within the scope of a national-based project (namely, Recovery.Net) in the mental health field. Method: We conducted (1) a narrative scan of relevant scientific literature on patient engagement in service co-production and (2) qualitative analysis of five subsequent workshops involving-in total−144 expert stakeholders (i.e., expert patients, doctors, nurses, psychologists, healthcare managers…). Data analysis involved three phases: identifying the themes, developing a framework, and confirming the framework. We coded and organized the data and abstracted, illustrated, described, and explored the emergent themes using thematic analysis. At the same time, content analysis was conducted to retrieve concepts and insights from relevant literature about health services co-production to integrate and extend the emergent conceptual framework. The framework was finally reviewed by the research partners belonging to the study project and preliminarily implemented. Results: According to the results of both the literature scan and the participatory workshops, the COCO evaluation framework for monitoring patient preference collection when coproducing medical pathways was drafted. The framework comprised of three organizing themes, corresponding to the three code clusters, which emerged from both the stakeholders' workshop data and relevant scientific literature: "the need for shared and practice-oriented evaluation standards"; "the quest for a multi-dominion approach"; Graffigna et al. "Co-production Compass" (COCO) "the need for a multi-stakeholder evaluation". These themes were interconnected and formed a conceptual framework to measure the phenomenon of meaningful patient involvement in healthcare co-production. This framework was endorsed by the research partners of the project and preliminarily applied in a mental health setting. Conclusion: The COCO framework provides guidance on aspects of co-production in healthcare to address for meaningful patient involvement in giving their inputs for more effective service and drug development processes. It could be particularly useful when monitoring patient-researcher partnership initiatives.
“…Engagement—the second key domain identified in the previous phases—was operationalized throughout the adoption of specific engagement-related scales retrieved from the scientific literature and demonstrated to be reliable for assessing the level of engagement of the different stakeholders involved in the healthcare process [i.e., Patient Health Engagement Scale (PHE-S®) ( 46 ); Caregiving Health Engagement Scale (CHE-s) ( 47 ); Utrecht work engagement scale ( 48 )].…”
Background: Engaging patients in raising their voices to advocate for their priorities being taken into account is today acknowledged as essential to improve research and decision-making in healthcare. However, literature is scarce regarding an evaluation framework to monitor the extent to which this approach is successful, in particular in mental health, where the application of patient-reported outcome measures (PROMs) is particularly difficult. In this study, we describe the process of development and first implementation of a new assessment framework-"Co-production Compass" (COCO) framework-for monitoring patient preference collection in co-production of healthcare services within the scope of a national-based project (namely, Recovery.Net) in the mental health field. Method: We conducted (1) a narrative scan of relevant scientific literature on patient engagement in service co-production and (2) qualitative analysis of five subsequent workshops involving-in total−144 expert stakeholders (i.e., expert patients, doctors, nurses, psychologists, healthcare managers…). Data analysis involved three phases: identifying the themes, developing a framework, and confirming the framework. We coded and organized the data and abstracted, illustrated, described, and explored the emergent themes using thematic analysis. At the same time, content analysis was conducted to retrieve concepts and insights from relevant literature about health services co-production to integrate and extend the emergent conceptual framework. The framework was finally reviewed by the research partners belonging to the study project and preliminarily implemented. Results: According to the results of both the literature scan and the participatory workshops, the COCO evaluation framework for monitoring patient preference collection when coproducing medical pathways was drafted. The framework comprised of three organizing themes, corresponding to the three code clusters, which emerged from both the stakeholders' workshop data and relevant scientific literature: "the need for shared and practice-oriented evaluation standards"; "the quest for a multi-dominion approach"; Graffigna et al. "Co-production Compass" (COCO) "the need for a multi-stakeholder evaluation". These themes were interconnected and formed a conceptual framework to measure the phenomenon of meaningful patient involvement in healthcare co-production. This framework was endorsed by the research partners of the project and preliminarily applied in a mental health setting. Conclusion: The COCO framework provides guidance on aspects of co-production in healthcare to address for meaningful patient involvement in giving their inputs for more effective service and drug development processes. It could be particularly useful when monitoring patient-researcher partnership initiatives.
“…Further monitoring of the experience would undoubtedly lead to improvements in the quality of services provided by these structures. The findings raise some interesting areas for consideration, discussion, and further research and might have wider implications for healthcare managers and professionals responsible for care management to adoptpatient and family engagement practices in their facilities (Barello, Castiglioni, Bonanomi, & Graffigna, 2019; Morelli et al, 2019; Cutica et al, 2014). Agency for Healthcare Research and Quality.…”
PurposeThe literature provides few examples of family caregivers’ retrospective evaluation of nursing home services. This study aimed at analyzing narratives of Italian family caregivers of elders who experienced nursing home placement.Design and MethodsData were gathered through in‐depth interviews with family members after their relatives’ death. The interviews were based on the Critical Incident Technique, which allowed the categorization of the most memorable positive and negative events from the perspective of family members of elders deceased in nursing homes. Interviews were interpreted with a phenomenologically inspired thematic analysis approach. Participants were screened for complicated grief disorder as a confounding variable in relatives’ accounts of the treatment.ResultsResults suggested that positive long‐term recollection of the nursing home was associated with different themes emerging from the interviews: medical reliability and expertise, active demonstrations of care that extend beyond the contract with the facility, individualized attention, responsiveness, openness to dialog with family members about routines, management of the first impression, and family engagement. Lack of professionals’ expertise and medical failures, lack of care for patients’ personal goods, lack of family involvement, lack of individualized attention, lack of responsiveness, poor patient surveillance, and structural limits of the facilities were the themes that were more frequently negatively associated with the nursing home experience.Implications for PracticeFocusing on the key dimensions connected to the quality of the experience of family members can enrich the quality of existing nursing home services and allow healthcare policymakers and managers to design better facilities for the patients.
“…The effect of subjective involvement in caregiving on exhaustion is less pronounced if an informal caregiver feels appreciated. The indirect effect of objective involvement or engagement [26] via subjective involvement in caregiving on exhaustion results from the multiplication of the coefficients of the two direct effects [27,28].…”
Background/Aims: Family members, who are often involved in providing home care, are often referred to as informal caregivers. The aim of our study is to analyze how their involvement in caregiving is connected to exhaustion and how this is influenced by caregiving training, social integration and appreciation controlled for social and demographic determinants.Methods: Across Germany, a multi-center study with randomly selected home care services was conducted in 2015. Questionnaires were based on the ARR inventory and handed out to informal caregivers and home care nurses separately. 223 complementary datasets could be analyzed for our purpose. A structural equation model was used to analyze the data.Results: First, objective involvement in caregiving increases subjective involvement (β = 0.161, p < 0.01), which in turn increases exhaustion (β = 0.231, p < 0.001). Second, the interactive effects between objective involvement and both caregiving training (β = -0.184, p < 0.001) and social integration (β = -0.094, p < 0.05) on subjective involvement in caregiving are statistically significantly negative. Similarly, the interactive effect on exhaustion between subjective involvement in caregiving and appreciation is negative (β = -0.126, p < 0.01).
Conclusion:If a caregiving relative has received training or is socially integrated, the effect of objective involvement on subjective involvement in caregiving is less pronounced. Further, the effect of subjective involvement in caregiving on exhaustion is less pronounced if an informal caregiver feels appreciated. Therefore, caregiving training and appreciation are important to moderate exhaustion in informal caregivers.
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