| Dignity is a valuable,respected and honored state of life.For patients with terminal diseases,such as cancer patients,dignity also means physical comfort,functional autonomy,meaning of life,spiritual comfort,interpersonal communication and sense of belonging.A lot of studies have found that there is a significant negative correlation between dignity loss and quality of life in patients with advanced cancer.Therefore,within the modern palliative treatment system,apart from physical symptoms management,such as pain and fatigue,maintenance of dignity of patients is emphasized as well in the health care for patients with malignant tumors.Professor Chochinov from Canada proposed a multi-dimensional Dignity Model based on years of intensive research,which covers three domains including disease-related symptoms,maintenance of individual dignity and social dignity.On this basis,dignity therapy was created to encourage patients to recall important and unforgettable events in their lives.DT is administered by trained medical staff.DT interview provides an opportunity to share important life experience,inner feelings,emotions and wisdom for patients with terminal illness.It is tape-recorded and transcribed,with an edited transcript or generativity document being returned to the patient,to bequeath to their loved ones.DT plays an important role in maintaining dignity of patients in terms of bolstering the meaning of life,decreasing psychological distress,enhancing quality of life,and promoting family harmony.DT has been widely used in clinical practice in Europe and America and recommended by health care professionals and recognized by patients and their families.The National Comprehensive Cancer Network(NCCN)“Distress Management” Guidelines recommend using the dignity therapy for maintenance of dignity of dying patients.Meanwhile,the Chinese Guidelines on Psychotherapy for Cancer also recommend using Dignity Therapy as one of the effective individual interventions for patients with advanced malignant tumors,which highlights that it should be widely used in clinical practice.Patients at the end of life who are consciously and physically competent are recommended to accept dignity therapy.However,DT has not been widely used in domestic clinical practice at present,because the Dignity Model has different connotations in different cultural backgrounds,and the applicability of DT is also different.Based on the dignity model and cultural characteristics of countries,researchers from many countries have studied the connotation of patients’ dignity in terms of regional and cultural differences,and found some new sub-themes or influencing factors.Compared with western countries,the traditional culture in mainland China has great difference.In traditional Chinese culture,patients are tended to have strong "sense of shame towards disease",pay more attention to family,self-express and communicate poorly,and tend to be introverted.Therefore,the connotation and influencing factors of the dignity of patients with malignant tumors in mainland China may have their own unique characteristics.Dignity therapy was created based on the Canadian Dignity Model may not be suitable for Cancer patients with distinctive Chinese characteristics cultural backgrounds.It is necessary to adapt dignity therapy according to local culture by cultural adaptation before the implementation of dignity therapy.A series of studies on dignity has been conducted by our research team.In the preliminary study on dignity loss in patients with malignant tumors,some results found different characteristics from those have been published in foreign studies.However,there were few patients included in our study.They were with middle-stage and advanced malignant tumors from a single center.There was a lack of early stage patients,and the collection of data of related influencing factors was incomplete.Therefore,the results of the study are not representative enough,and there are some limitations.On the basis of previous studies,this study collected patient data from two representative cancer hospitals in North China(Beijing Cancer Hospital and Fourth Hospital of Hebei Medical University),which could basically represent the characteristics of patients with malignant tumors in North China.This study also included some patients with early-stage malignant tumors and expanded the scope of data collection for more comprehensive and in-depth analysis of dignity loss.This study aims to analyze the characteristics and influencing factors of dignity loss of cancer patients in North China.On this basis,the cultural adaptation and preliminary application of DT are studied.These studies can potentially lay a foundation for the promotion and implementation of DT in clinical practice,and make meaningful explorations and attempts to maintain patients’ sense of dignity,improve patients’ quality of life and optimize overall management.In part one,the research group investigated the prevalence and characteristics of dignity loss in cancer patients and analyzed the correlation between dignity loss and quality of life.In part two,we analyzed the independent factors affecting the dignity of cancer patients,so as to intervene individually to maintain the sense of dignity of cancer patients and improve the quality of life.In part three,semi-structured interviews with palliative care experts,clinical nurses,cancer patients and their families were conducted for cultural adaptation,adjusting the DT question protocol,and raising suggestions for the implementation of DT.In part four,we combined quantitative research with qualitative research to study the applicability,feasibility and effectiveness of DT.Part 1 Dignity loss characteristics of patients with cancer and its correlation analysisObjective: To investigate the incidence and degree of dignity loss in patients with cancer,analyze the clinical factors related to dignity loss of patients,and the correlation among dignity loss,quality of life and its dimensions.Methods: Inpatients and outpatients with cancer from the Fourth Hospital of Hebei Medical University and Beijing Cancer Hospital were enrolled in this study.The Patient Dignity Inventory(PDI)and EORTC Core Quality of Life questionnaire(EORTC QLQ-C30)was used for measuring patients’ dignity loss and quality of life.Spearman’s correlation analysis was conducted to analyze the correlation factors of dignity loss,and the correlation among dignity loss,quality of life and its dimensions.Results:1.A total of 403 patients with cancers were included in this study.In terms of loss of dignity,20 patients(4.96%)didn’t report loss of dignity,295 patients(73.20%)had mild loss of dignity,78(19.35%)had moderate and 10(2.48%)had severe loss of dignity.2.The mean PDI score was 41.3.The mean number of PDI problems reported by patients was four.The three most prevalent PDI problems of patients were “experiencing physically distressing symptoms”(146,36.23%),“Feeling that I am a burden to others”(126,31.27%)and “worrying about future”(114,28.29%).3.Companionship(r=0.167,P=0.001),PS(r=0.392,P<0.001),diagnosis to investigation time(r=0.107,P=0.031),stage of disease(r=0.279,P<0.001),stage of treatment(r=0.333,P<0.001),surgery and recurrence(r=0.158,P=0.001),anxiety(r=0.612,P<0.001),depression(r=0.603,P<0.001),psychological distress(r=0.453,P<0.001),symptom burden(r=0.421,P<0.001)and impact on life(r=0.450,P<0.001)were positive correlated with loss of dignity.Age(r=-0.134,P=0.007),occupation(r=-0.124,P=0.013)were negative correlated with loss of dignity.Loss of dignity had a moderate positive relationship with anxiety and depression.4.Loss of dignity and quality of life are significant correlated with each other.Dignity existential distress showed moderate negative correlation with emotional function(r=-0.513,P<0.001).Dignity symptom distress showed moderate negative correlation with emotional function(r=-0.675,P<0.001)and social function(r=-0.515,P<0.001).Dignity symptom distress showed moderate positive correlation with fatigue symptoms(r=0.541,P<0.001).Part 2 Analysis on influencing factors of dignity loss of patients with cancerObjective: To analyze the independent influencing factors of dignity loss of patients with cancer.Methods: Collect data on possible influencing factors of 403 patients with dignity loss in Part 1.Logistic regression analysis was employed to predict the independent factors influencing patient dignity.Results:1.Results of a multivariable logistic regression showed that age,occupation,PS,stage of disease,anxiety,depression and symptom burden and impact on life were significant predictors for loss of dignity in patients with cancer(P<0.05).2.Patients Whose age≤44 years old(P=0.003),who were farmer(P=0.002),whose PS is 3-4(P=0.010),who had a Late stage(P=0.012),who had a higher level of anxiety(P=0.006)or depression(P=0.001),who had a severe psychological distress(P=0.047),who had a higher symptom burden(P=0.026)and impact on life(P=0.016)were more susceptible to loss of dignity.Part 3 Cultural adaptation of dignity therapyObjective: To complete cultural adaptation of dignity therapy to adapt to Chinese patients with cancer.Methods: Following the translation procedure of the EORTC Quality of Life-group,we translated the dignity therapy question protocol(DTQP)from English to Chinese.Semi-structured questionnaires were used to investigate and interview 10 palliative therapists and 20 nurses,20 patients with cancer and their families.Suggestions for revision and implementation of the dignity therapy were given to adapt to the Chinese cultural atmosphere.Results:1.The comments in dignity therapy Cultural adaptation were grouped into 4 concerns(10 themes):Dignity therapy may have negative effects on patients and families:(1)Inappropriate wording may increase patient stress;(2)Patients worry about putting pressure on their families。The problems of DTQP:(1)Understanding problem;(2)Potential overlap between questions;(3)Add new topics.Pay attention to patients:(1)Pay attention to the individual status of patients(education level and physical status);(2)Patients tend to talk about their children and are willing to communicate with them;(3)Asked for patient’s familys’ consent;(4)protect patient privacy.Dignity therapy executors should be trained strictly.During the interview,the executors should pay attention to give proper guidance to the patient and explain the wording in DTQP.2.Appropriately adjustments of DTQP.(1)Some wording needs to be adjusted.Question 1: The question “When did you feel most alive?” change to “When did you feel most fully or energetically?”.Question 5: The question “things that you would want to take the time to say once again?” change to “things that you would want to take time to talk attentively”(2)Potential overlap questions needs to be merged.Combine Question 7 and Question 8 into a new question: “What have you learned about life or other important words that you would want to pass along to others? What advice or words of guidance that may help prepare your family for the future would you wish to pass along to your son,daughter,husband,wife,parents,or other(s)?”(3)Add a new question about "Regret" and "Wish".Add “Do you have anything which cannot be relieved or is regrettable? Do you have any unfulfilled wishes?”.Part 4 Preliminary study on the acceptability and feasibility of dignity therapyObjective: To complete the preliminary study on the acceptability,feasibility and effectiveness of dignity therapy.Methods: The plan of dignity therapy was introduced in detail to 20 patients and their families who participated in the cultural adaptation of dignity therapy.The completion status,completion time and patient satisfaction of dignity therapy were analyzed.The Patient Dignity Inventory,Distress Thermometer and hospital anxiety and depression scale were used for dynamic evaluation.Paired Students-t-test was employed to preliminarily analyze the effectiveness of dignity therapy.Qualitative research was used to analyze the interview content and process of patients who have completed dignity therapy.Results:1.18 patients agreed to participate in dignity therapy,7 patients conducted dignity therapy interviews,and 5 patients completed the interview and the generativity document.2.The average interview time of dignity therapy was 43 minutes(34-58 minutes).The patient satisfaction of dignity therapy averaged 8.60 points.The patient’s energy is tolerable.3.Quantitative analysis of the data of 5 patients who completed dignity therapy:(1)After 3 weeks of follow-up,the number of dignity questions(PDI≥3)was reduced.PDI(P=0.080)and Depression(P=0.052)scores were not significantly improved,but Anxiety(P=0.035)and Distress Thermometer(P=0.009)scores were significantly improved.(2)After 3 weeks of follow-up,the number of dignity questions(PDI≥ 3)was reduced.PDI(P=0.023),Anxiety(P=0.013),Depression(P=0.021),and Distress Thermometer(P=0.009)scores were significantly improved.4.Qualitative Research(1)Dignity therapy can benefit patients and families.The positive comments were grouped into 5 concerns: Full expression;Diversion;Reduce the psychological distress;To express and grant wishes;Family support and family harmony.(2)Some patients refused or didn’t complete dignity therapy.The negative comments were grouped into 5 concerns: The main reasons for patients’ refusal to participate in dignity therapy were(1)family members’ disagreement and(2)low educational level;The main reasons for The patients agreed to participate in dignity therapy,but not conducting dignity interview were(3)physical symptoms and(4)inappropriate time arrangement.The main reasons for The patient agreed and began the dignified interview,,but not incomplete the whole process of dignity therapy:(3)physical symptoms and(5)Disease deteriorated suddenly.Conclusion:1.In northern China,most cancer patients’ dignity were impaired slightly or moderately.Physical symptoms,fear of being burden of others and worrying about future are the three most common problems of impaired dignity of patients.2.Dignity of cancer patients showed significant association with quality of life.Anxiety and depression showed more consistent associations with dignity than other factors.It is important to improve the dignity and quality of life of patients3.Patients who were younger,who were farmers,who had a higher PS and a higher level of anxiety or depression,who had a severe psychological distress,who had a higher symptom burden and impact on life were more susceptible to loss of dignity.4.The DTQP needs to be adjusted appropriately.The words that patients cannot accurately understand should be explained and guided by the strictly trained therapist in the dignity interview process.Patient privacy needs to be kept strictly confidential.5.The culture-adaptation dignity therapy can be recognized and accepted by all palliative therapists,clinical nurses,patients with cancer and most of their families.Dignity therapy can bring benefits to patients and their families.6.Dignity therapy showed excellent applicability,but there are some difficulties in the actual implementation.We should select patients without severe physical symptoms to participate in dignity therapy.we should arrange the interview time reasonably and obtain the consent of the patients’ families. |
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