Research On The Action Framework For The Participation Of Patients With Chronic Diseases And Their Families In Informal Advance Care Plannin

Background:Chronic diseases are the leading cause of health and death among our population.Advance Care Planning(ACP)is a measure to respect individuals’ preferences in the field of palliative care.In the absence of legislative support in China,informal ACP is a preliminary step for individuals to sign formal ACP,which help family members understand patients’ dying wishes and protect patients’ autonomy.Under the culture of collectivist,families are indispensable for patients’ medical decision-making and end-oflife care.This study aims to construct a framework for action to promote informal ACP discussion,and provide reference for ACP research and clinical practice.Objectives:To construct a framework for action of informal ACP between patients with chronic diseases and their families in Chinese culture.(1)Form the draft of framework for action of informal ACP between patients with chronic diseases and their families in Chinese culture.(2)Revise and form the final framework for action of informal ACP between patients with chronic diseases and their families in Chinese culture.Methods:(1)Based on the socio-ecological system theory,theoretical analysis was used to determine the modules and core elements of the informal ACP action framework.(2)Preliminary identification of recommended action strategies for the informal ACP action framework.①By literature analysis,ACP evidence-based guidelines,expert consensus,systematic review and original studies were systematically searched.The literature evidence was extracted to determine the recommended action strategies of the framework.②The text analysis was used to retrieve policy documents,and improved the recommended action strategies of "systematic foundation" of the action framework.(3)The draft of the informal ACP action framework in Chinese culture was constructed by cross-sectional survey and interviews.①Snowball sampling was used to conduct online survey to understand the ACP cognition and readiness of the public,and multiple linear regression analysis was used to screen the influencing factors,so as to improve the recommended action strategy of "public education" in the exosystem of action framework.②Interview method:purposive sampling method was adopted to interview the views,attitudes and past behaviors of medical staff,patients with chronic diseases and their families in hospitals and community.The interview recordings were transcribed into text.Colaizzi’s seven-step analysis method was used to guide the data analysis.NVivo 12.0 software was used to encode the data.To analyze and extract the themes,then supplemented the recommended action strategies of "social culture" module of the macrosystem,and improved the recommended action strategies of each module.Through the above methods,the draft of informal ACP action framework was constructed.(4)Based on expert consultation,the informal ACP action framework was revised.The researcher consulted experts who were in relevant fields about the action framework.To revise the modules,core elements and recommended action strategies of the action framework in combination with experts’ suggestions.To preliminarily evaluate the feasibility of the recommended action strategies by likert 5-level score,and describe the feasibility with mean and standard deviation of the score.The coefficient of variation was used to reflect the dispersion of expert opinions.The positive degree,authority degree and opinion coordination degree of experts were analyzed.Results:1.To identify modules and core elements of the informal ACP action framework.Based on social ecosystem theory,Canada ACP national framework was put into the social environment of China.The action framework was divided into four system levels by theoretical analysis,including 8 modules and 18 core elements.The macrosystem includes three modules:social culture,systematic foundation and continuous quality improvement.The exosystem includes 2 modules:medical institution support and public education.The mesosystem consists of two modules:the medical staff practice,the informal ACP between patients and their families.The microsystem includes one module:family communication of informal ACP between patients and their families.2.To identify recommended action strategies for informal ACP action framework.2.1 literature evidence extractionLiterature analysis was used to extract the evidence of core elements of the action framework.After literature searching,screening and full-text reading,4 guidelines,17 systematic reviews,2 randomized controlled trials and 4 quasi-experimental studies were finally included.Summarized the literature evidence,and formulated 40 recommended action strategies for each core element of the action framework.There are 10 recommended action strategies under the 5 core elements contained in the "systematic foundation" and "continuous quality improvement" module.Because the social culture is deeply influenced by Chinese culture,its recommended action strategies were not included in literature analysis.There are 11 recommended action strategies under the 6 core elements contained in institution support and public education module.There are 18 recommended action strategies under the 5 core elements contained in the module of medical staff practice and informal ACP discussion between patients and their families.There is 1 recommended action strategy under 1 core element contained in the module of informal ACP family communication between patients and their families.2.2 Analysis of policy documentsThrough the analysis of policy documents,2 policy regulations,5 guiding opinions,1 normative document and 1 practice guide were included.Extracted and analyzed the relevant content of ACP,improved the recommended action strategies of "systematic foundation" module,which includes three aspects:policy support to promote ACP systematically,to ensure the continuity of informal ACP discussion,and to respect patients’rights and wishes.3.To form the draft of informal ACP action framework.Based on the above results,combined with cross-sectional survey and interviews,the cultural suitability of recommended action strategies was analyzed,and the draft of informal ACP action framework was constructed.(1)Through cross-sectional survey,from July to September 2021,online questionnaire survey was conducted on public ACP cognition and readiness,and 347 valid questionnaires were collected totally.The average score of ACP cognition and ACP readiness was 0(0,3)and 85.57±12.04 respectively.Seven variables entered the multiple linear regression model of ACP cognition and accounted for 47.2%of the total variance(F=48.342,P<0.01).A total of 8 variables entered the multiple linear regression model of ACP readiness,explaining 24.2%of the total variance(F=18.775,P<0.01).The influencing factors of public cognition to ACP included training courses,internet media,reading books and literature,health education from medical staff,participation in treatment decision-making discussions and chatting with family and friends.The intelligibility of information provided by existing medias was a common factor affecting public ACP cognition and readiness.According to the results,the strategy description of"public education" in the action framework was improved.(2)From January to September 2022,15 clinical medical staff,16 patients with chronic diseases and 14 family members of patients with chronic diseases were included for oneon-one interview.After data analysis,the themes in the "social culture" module of the macrosystem were extracted.Four recommended action strategies were formed from the four themes of the core element "focusing on the social and cultural factors affecting public participation in ACP".The interpretation of the recommended action strategies was formed by 12 sub-themes.In other modules,a total of one theme was extracted in the module of "continuous quality improvement" in macrosystem.A total of 1 theme and 3 sub-themes were extracted in the "institution support" module of the exosystem.There were 3 themes and 13 sub-themes in the module of "medical staff promote patients and their families to participate in informal ACP" in the mesosystem.A total of 2 themes and 3 sub-themes were extracted in the "family communication of informal ACP between patients and family members" module of the microsystem.Based on the interview themes,the researcher improved the recommended action strategies.4.To revise and form the final informal ACP action framework.Further revision of the informal ACP action framework through expert consultation.13 experts agreed with the modules and core elements of the action framework.4 experts proposed five aspects of suggestions for the modules and core elements.There was no contradiction or inconsistency between the experts’ opinions.The researcher revised the framework based on the experts’ suggestions.In the second round of expert consultation,the experts’ opinions were quite unanimous.The feasibility scores of the recommended action strategies in two rounds of consultation were more than 4 points,and the coefficient of variation was less than 0.25,indicating that the informal ACP action framework was in line with the culture and clinical practice in China,and the recommended action strategies were feasible.Conclusion:This study constructed a framework for action of informal ACP between patients with chronic diseases and their families in Chinese culture.The framework included four system levels:macrosystem,exosystem,mesosystem and microsystem.The four system levels include 8 modules and 18 core elements.Finally,the recommended action strategies of each core element of the action framework were determined.After expert consultation,the framework and strategies constructed in this study are in line with Chinese culture and clinical practice,and could provide references for promoting clinical practice of informal ACP in China.