Application of family-based dignity therapy program in primary caregivers of advanced cancer patients
Bing Wu, Qiuyang Chen and Xuan Sun contributed equally to this article.
Abstract
To explore the effects of family-based dignity therapy on negative emotions, post-traumatic growth, family cohesion and adaptability in primary caregivers of advanced cancer patients, so as to provide the reference for clinical implementation of family-based dignity therapy. A non-synchronous controlled clinical trial design was adopted. A total of 38 pairs of advanced cancer patients and their primary caregivers who were hospitalized were conveniently selected as the control group for routine care. A total of 38 pairs of advanced cancer patients and their primary caregivers who were hospitalized from were selected as the experimental group, and family-based dignity therapy program was administered on the basis of the control group. Before intervention, 1 and 4 weeks after intervention, hospital anxiety and depression scale, post-traumatic growth inventory, family adaptability and cohesion evaluation scale-II were used to evaluate the intervention effect. At the first and fourth week after the intervention, the anxiety score of the experimental group was lower than that of the control group, the post-traumatic growth level was higher than that of the control group, and the family function at the 4th week after the intervention was better than that of the control group, with statistical significance (p < .05). The time effect, inter-group effect and interaction effect were statistically significant in the comparison of anxiety score, post-traumatic growth level and family function between the two groups at different time points (p < .05). There was no significant difference in time effect, inter-group effect and interaction effect between depression levels (p > .05). Family-based dignity therapy program can significantly alleviate the anxiety of the primary caregivers of advanced cancer patients, enhance their post-traumatic growth level, and effectively improve family function, which has certain promotion value in clinical care.
1 INTRODUCTION
According to the latest data from the National Cancer Center, China ranks first in the world in terms of cancer incidence and mortality.1 In China, family is regarded as the basic unit of life, and cancer is not only a traumatic experience for the patient, but also a family event.2 Chinese traditional culture attaches great importance to family and filial piety, and family plays a central role in personal life. The support and involvement of the family in the face of the disease is essential for cancer patients. Studies have shown that family support includes not only emotional support, but also medical decision-making, daily care, and financial assistance. Therefore, family is the focus of dignity therapy in China.3 Moreover, research has shown that family caregivers are prone to negative emotional experiences such as anxiety, depression, and post-traumatic stress disorder during the long-term treatment process with cancer patients due to the multiple pressures of fear of the disease, unpredictability of treatment efficacy, significant time consumption, and heavy economic burden.4-6 The mental health status of caregivers directly affects the treatment and quality of life of patients, and even the functioning of the entire family. Therefore, the psychological status of the primary caregivers of patients with advanced cancer also requires urgent attention.7 Currently, there is a general lack of non-pharmacological, structured psychological interventions suitable for patients at the end of life and their families.8
Family-based dignity therapy (FBDT) is a novel hospice care family psychological intervention that provides patients and their families with an opportunity to share memories and create a family document through recorded interviews,9 aiming to enhance patients' sense of dignity, promote meaningful communication between patients and their families, reduce the psychological burden of family members, and improve family relationships. In the context of FBDT, patients are afforded the opportunity to compile a legacy document, a comprehensive narrative encapsulating their life stories, values, cherished memories, along with personal statements and messages of significance.10 Upon achieving the patient's satisfaction through meticulous editing of this document, they may subsequently elect to disseminate it among their family members and close friends. There is a growing body of evidence attesting to the benefits of FBDT for individuals facing serious illnesses. Nevertheless, ambiguity persists regarding the potential impact of FBDT on the patients' loved ones.11 The majority of studies evaluating the impacts of the aforementioned interventions have primarily adopted a quantitative research approach, with a lesser proportion utilizing qualitative methodologies.12 Both of these research paradigms encompass distinct sets of limitations and strengths, necessitating a nuanced understanding and careful consideration in their application to medical research.13
Therefore, this study applied FBDT to patients with advanced cancer and their primary caregivers to explore the impact of FBDT on the psychological status of primary caregivers and family functioning. The findings are reported as follows.
2 METHODS
2.1 Design and settings
Convenience sampling method was used to select advanced cancer patients and their primary caregivers who were hospitalized from April 2022 to September 2023 in a tertiary-level specialized oncology hospital in Jiangsu Province as the study population. A non-simultaneous controlled clinical trial design was used, with 38 pairs of patients and their primary carers hospitalized from April 2022 to October 2022 as the control group, and 38 pairs of patients and their primary carers hospitalized from November 2022 to September 2023 as the experimental group.
This study is experimental research, and the sample size was calculated using the formula for comparing means of two samples: n1 = n2 = 2[(tα/2 + tβ)S/δ]2. With a significance level of α = .05 (two-tailed) and a type II error probability of β = .10, we obtained tα/2 = 1.96，tβ = 1.282 from the table. Using anxiety as the outcome measure, δ = 10.52–8.98 = 1.54, with S calculated as 1.72. This resulted in n1 = n2 = 26; considering a 20% dropout rate, each group required at least 33 participants to achieve adequate statistical power. The study initially enrolled 76 pairs, with 38 pairs in both the experimental and control groups, respectively.
2.2 Participants
Inclusion criteria: patients: ① diagnosed with malignant tumor at stage III or IV according to the TNM staging system by pathology; ② aged ≥18 years; ③ aware of the diagnosis and condition of the disease; ④ interested in or motivated to participate in the FBDT; ⑤ conscious and with normal verbal expression. Primary caregivers: ① immediate family members, including spouses, offspring, and relatives, who are responsible for the primary care of the patient; ② daily caregiving time ≥6 h and the caregiving time lasts for more than 2 months; ③ age ≥18 years ④ knowledge of the patient's disease diagnosis, condition, and treatment; ⑤ interest or motivation to participate in the FBDT; ⑥ conscious and normal speech; ⑦ have a smartphone and the ability to read electronic text.
Exclusion criteria: Patients: ① expected survival time <2 weeks; ② history of mental illness; ③ have received other similar psychological interventions since the disease.
Primary caregiver: ① previous or current psychological problems; ② history of mental illness; ③ previous participation in similar psychological intervention studies.
Eliminate criteria: those whose data were not collected completely.
Withdrawal criteria: Patients: ① deterioration or death during the trial; ② refusal to continue participation during the trial; ③ loss of contact during follow-up. Family caregivers: ① no longer take the main care of the patient during the trial; ② refuse to continue to participate during the trial; ③ lose contact during the follow-up.
The study was approved by the Ethics Committee of the hospital (2022 Section-001), and all study participants signed an informed consent form.
2.3 Intervention method for the experimental group
2.3.1 Formation of the FBDT implementation team
The team consists of a director of the nursing department, 3 hospice nurses with more than 5 years of experience, 3 hospice nurses with intermediate titles and above, 1 oncology nurse with a national level 2 counselor's certificate, 1 clinical counselor, and 2 oncologists with more than 8 years of experience in hospice specialties. The Director of the Nursing Department is responsible for the design and guidance of the FBDT program. The doctor is responsible for the comprehensive assessment of the patient's physical condition. The specialist nurses are responsible for the implementation of the program, and the counselor is responsible for data collection.
2.4 Implementation process of FBDT
- Preparation stage. Prior to the intervention, all team members completed 20 h of standardized training and assessment, including the theoretical basis of FBDT, implementation steps, interview techniques, methods of creating legacy documents, and other precautions.
- Implementation phase. This study is a national multi-center RCT study and the implementation process includes 8 steps: ① Determine the applicable population: determine the appropriate study population based on the inclusion and exclusion criteria; ② Introduce the FBDT to the patients and their families: an informal conversation format was used, which included the purpose of the meeting, what is dignity therapy, possible benefits, how FBDT is implemented, how long it takes, what the patient needs to do and what the researcher can do to help the patient. Be careful with language and avoid mentioning words such as “terminal,” “dying,” “death and dying”, and so forth; ③ Provide an outline of the FBDT interview: after the FBDT was introduced to the study participants, they were provided with an outline of the questions to be asked, so that the patients and their primary carers could make a decision about whether to participate or not with a full understanding of the FBDT. The outline of the interview is shown in Table 1; ④ Collecting basic information about the patient and family: The collection of information was completed as soon as possible within 1–3 days after the study participants had decided to participate in FBDT, including name, age, marital status, current living arrangements, education, work, family members, diseases and other relevant information, as well as the recipient of the inherited documents; ⑤ Making an appointment for FBDT: The appointment was made after the study participants had agreed to participate in FBDT and generally the appointment was made within 3 days.⑥ Implementation of FBDT interview: according to the agreed time, the specialist nurse interviewed the patient and his/her main caregiver by using the outline of the FBDT questions and the interviews lasted 45–60 min/times, and the specific number of times and the duration of the interviews depended on the physical condition and the energy of the study participant. The researcher was highly involved, listened actively, paid attention to the patient's responses, and assisted the patient and family to organize their language by asking questions and guiding them. At the same time, the researcher needs to control the rhythm of the interview and arrange the time reasonably to ensure that all the questions in the outline can be talked about. Timely clarification of ambiguous information is needed to obtain sufficient details as much as possible. When the patient or family member cannot continue the interview due to emotional or physical conditions, and sp forth, the interview can be discontinued and an appointment can be made for the next interview, with an interval of no more than 3 days between two interviews. The interview process was synchronously recorded; ⑦ Creation of the family heritage document: after the interview, the interviewer applied the word program to transcribe the audio recording into a text document, completed the initial editing of the document within 1–3 days, handed the first draft to the research subjects for checking, and completed the revision and finalization of the document according to their suggestions within 1–2 days. The whole process complied with the three principles of timeliness, confidentiality and accuracy; ⑧ Sharing of the family heritage document: the document was designed and named according to the wishes of the research participants, and the final printed version of the heritage document was provided to the participants. the FBDT intervention was completed within 2 weeks.
| Topics | Questions |
|---|---|
| Important memories | Patient: Thinking back, what are the things or experiences you remember most vividly or consider most important? Family member: Regarding your relationship with [Patient's Name], what are the moments that stand out most in your memory? |
| About oneself | Patient: Regarding yourself, what do you most want your family to know or remember about you? Family Member: Can you describe how [Patient's Name] appears in your heart? What does he/she mean to you? |
| Life roles | Patient: What are the significant family/occupational roles you have undertaken? What did you accomplish in these roles? Family Member: What significant roles do you think [Patient's Name] has undertaken? Why are these roles important? |
| Personal achievements | Patient: What are the important or noteworthy things you believe you have done? What are you most proud of? Family Member: What are the important or noteworthy things you think [Patient's Name] has done? |
| Family support | Patient: Since falling ill, what support have your family members provided you with? Family Member: Since [Patient's Name] fell ill, how have you cared for and supported him/her? |
| Gratitude | Patient: Are there any things you would like to express gratitude for to your family? Family Member: Are there any things you would like to express gratitude for to [Patient's Name]? |
| Apologies and forgiveness | Patient: Are there any things you need to apologize for to your family? Are there people or situations you wish to forgive or let go of? Family Member: Are there any things you would like to apologize for to [Patient's Name], or express your forgiveness toward? |
| Expectations and wishes | Patient/Family Member: What are your expectations and wishes for each other? |
| Lessons learned | Patient: What life lessons would you like to share with your family? Are there any advice or words of wisdom you would like to pass on? Family Member: What important life lessons have you learned from [Patient's Name]? |
| Teachings and advice | Patient: To help your family live well in the future, what important instructions would you like to convey? Family Member: Regarding your future life and plans with your family, what would you like to say to [Patient's Name]? |
| Other matters | Patient/Family Member: Is there anything else you would like to include in this family document? |
2.5 Intervention method for the control group
The control group received routine nursing care, which mainly included:
① Upon admission, the responsible nurse introduced the department's environment to the patient and their caregiver to alleviate anxiety.
② During treatment, the patient was provided with personalized information on the disease, medication guidance, dietary education, and psychological support based on their condition. Meanwhile, caregiving techniques were explained to the primary caregiver.
③ Upon discharge, a health education manual was distributed to the patient and their caregiver, with detailed explanations on home care techniques, and regular follow-up visits were recommended.
④ After discharge, follow-up visits were conducted through phone calls, WeChat, or home visits to understand the physical and psychological status of the patient and the primary caregiver, provide guidance on existing issues, with a frequency of once a month for a duration of 6 months.
2.6 Evaluation indicators
2.6.1 Anxiety and depression level
The Hospital Anxiety and Depression Scale (HADS)14 was used to assess the anxiety and depression levels of the primary caregiver. This self-rating scale is primarily used to evaluate anxiety and depression among patients in hospitals. It consists of 14 items, including two dimensions: anxiety and depression, with 7 items each. The scale uses a Likert 4-point scoring system (0–3 points), with a total score of 0–21 points for each dimension. A score of ≥9 points indicates the presence of anxiety or depression.15 The Cronbach's α coefficients for the anxiety and depression dimensions among family caregivers of cancer patients in China are 0.857 and 0.851, respectively.16
2.6.2 Post-traumatic growth level
The Post-traumatic Growth Inventory was used to evaluate the post-traumatic growth level of the primary caregiver. Developed by Tedeschi et al.,17 it comprises five dimensions: relationships, new possibilities, personal strength, spiritual change, and appreciation of life, with 21 items. Each item is scored using a Likert 6-point scale (0–5 points), with a total score ranging from 0 to 105 points. A higher score indicates a higher level of post-traumatic growth.18 This scale has been widely used among various patient populations in China, with Cronbach's α coefficients ranging from 0.611 to 0.874 for each dimension and the total scale.19
2.6.3 Family function
The family adaptability and cohesion evaluation scale-II (FACES II) was used to assess the family function of the primary caregiver. Developed by Olson et al.,20 it has Cronbach's α coefficients ranging from 0.680 to 0.850 for each dimension. This scale primarily measures the emotional bond between family members and the ability of the family system to adapt to environmental changes. It consists of two dimensions: family cohesion (16 items) and adaptability (14 items), scored using a Likert 5-point scale (1–5 points). The total score ranges from 30 to 150 points, with a higher score indicating better family function.21
2.6.4 Data Collection and Quality Control
Data collection was conducted by a psychological consultant using paper questionnaires or Questionnaire Star 1 day before the implementation of the FBDT intervention, as well as 1 and 4 weeks after the intervention. The anxiety, depression, post-traumatic growth level, family adaptability, and intimacy of patients and primary caregivers were evaluated. If paper questionnaires were used, they were carefully checked upon collection. If any omissions or logical errors were found, the participants were asked to complete or modify them immediately. For those who completed the questionnaire through Questionnaire Star, they were promptly contacted by phone or WeChat to request resubmission.
2.6.5 Statistical methods
Statistical analysis was performed using SPSS 26.0 software. Normally distributed continuous variables were described using mean ± standard deviation (−X ± S), with independent samples t-test used for comparison between groups and repeated measures analysis of variance for comparison across different time points. Non-normally distributed continuous variables were expressed as M (P25, P75), with Mann–Whitney U test used for comparison between groups and generalized estimating equations for comparison of indicators across different time points. Categorical variables were described using frequency and percentage, with chi-square test, Fisher's exact test, or rank-sum test used for comparison between groups. p < .05 is considered a statistically significant difference.
3 RESULTS
3.1 Comparison of general characteristics between the two groups
A total of 76 pairs of advanced cancer patients and primary caregivers were included in this study, of which 1 pair withdrew from the control group at 1 week of the intervention, and 2 pairs withdrew from each of the control group and the experimental group at 4 weeks of the intervention. A total of 71 pairs finally completed this study (35 pairs in the control group and 36 pairs in the experimental group). There was no statistically significant difference in the general characteristics of patients and primary caregivers between the two groups (p > .05) (Tables 2 and 3).
| Characteristics | Experimental group (n = 36) | Control group (n = 35) | Statistical value | p-value |
|---|---|---|---|---|
| Age (−x ± s) | 60.62 ± 12.50 | 62.08 ± 13.74 | 1.523a | .347 |
| Sex (%) | 0.122b | .727 | ||
| Male | 16 (44.44) | 17 (48.57) | ||
| Female | 20 (55.56) | 18 (51.43) | ||
| Marital status (%) | 2.113c | >.999 | ||
| Single | 1 (2.78) | 1 (2.86) | ||
| Married | 34 (94.44) | 33 (94.28) | ||
| Divorced | 0 (0.00) | 1 (2.86) | ||
| Widow | 1 (2.78) | 0 (0.00) | ||
| Education level (%) | 0.216c | .940 | ||
| Junior high school and below | 10 (27.78) | 11 (31.43) | ||
| High school or secondary school | 22 (61.11) | 20 (57.14) | ||
| College and above | 4 (11.11) | 4 (11.43) | ||
| Per capita monthly income (RMB) (%) | 0.303c | >.999 | ||
| <1000 | 2 (5.56) | 2 (5.71) | ||
| 1000–3000 | 10 (27.78) | 9 (25.72) | ||
| 3001–6000 | 14 (38.89) | 13 (37.14) | ||
| >6000 | 10 (27.78) | 11 (31.43) |
- a t-test.
- b χ2 test.
- c Fisher's exact test.
| Characteristics | Experimental group (n = 36) | Control group (n = 35) | Statistical value | p-value |
|---|---|---|---|---|
| Age(−x ± s) | 46.72 ± 10.64 | 48.13 ± 9.78 | 0.792a | .446 |
| Sex (%) | 0.354b | .638 | ||
| Male | 17 (47.22) | 19 (54.29) | ||
| Female | 19 (52.78) | 16 (45.71) | ||
| Education level (%) | 0.434b | .848 | ||
| Junior high school and below | 8 (22.22) | 6 (17.14) | ||
| High school or secondary school | 20 (55.56) | 22 (62.86) | ||
| College and above | 8 (22.22) | 7 (20.00) | ||
| Working conditions (%) | 0.206a | .793 | ||
| Employed | 11 (30.56) | 9 (25.71) | ||
| Unemployed | 25 (69.44) | 26 (74.29) | ||
| Relationship with patients (%) | 0.896c | .903 | ||
| Spouse | 18 (50.00) | 20 (57.14) | ||
| Children | 16 (44.44) | 13 (37.14) | ||
| Parents | 1 (2.78) | 1 (2.86) | ||
| Relatives | 1 (2.78) | 1 (2.86) |
- a t-test.
- b χ2 test.
- c Fisher's exact test.
3.2 Comparison of anxiety and depression levels at different time points between the two groups
Comparison of the anxiety and depression scores of the primary caregivers in the two groups before the intervention was not statistically significant (p > .05). 1 and 4 weeks after the intervention, the difference in the anxiety scores of the experimental group was lower than that of the control group and was statistically significant (p < .05). Comparison of anxiety scores of the two groups at different time points was statistically significant in terms of time, between-groups, and interactions (p < .05), and comparison of the depression scores of the two groups was statistically significant (p < .05). In terms of time, between groups, and interaction were not statistically significant (p > .05) (Table 4).
| Groups | Numbers | Anxiety scorea | Z-value | p-value | ||
|---|---|---|---|---|---|---|
| Pre-intervention | 1-week post-intervention | 4 weeks post-intervention | ||||
| Experimental group | 36 | 14.00 (8.00, 17.50) | 9.50 (4.50, 12.00) | 8.50 (4.00, 11.50) | −3.284 | <.001 |
| Control group | 35 | 14.50 (9.50, 17.25) | 14.75 (10.50, 17.00) | 14.25 (10.00, 17.50) | −1.865 | .617 |
| Z-value | −1.657 | −2.432 | −2.096 | |||
| p-value | 0.532 | <0.001 | <0.001 | |||
| Depression scoreb | ||||||
| Experimental group | 36 | 10.50 (8.00, 12.50) | 10.00 (8.50, 12.00) | 9.50 (8.00, 11.50) | −0.931 | .865 |
| Control group | 35 | 10.00 (8.00, 13.00) | 10.50 (9.00, 12.50) | 10.00 (8.50, 13.00) | −0.872 | .804 |
| Z-value | −1.053 | −1.036 | −1.327 | |||
| p-value | 0.712 | 0.683 | 0.735 | |||
- a Wald χ2time = 1528.738, P time<0.001; Wald χ2 intergroups = 489.055, P intergroups<0.001; Wald χ2interaction = 294.751, P interaction<0.001.
- b Wald χ2time = 1825.362, P time>0.05; Wald χ2 intergroups = 236.773, P intergroups>0.05; Wald χ2 interaction = 412.548, P interaction>0.05.
3.3 Comparison of levels of post-traumatic growth at different time points between the two groups
There was no statistically significant difference in the comparison of the post-traumatic growth scores of the primary caregivers in the two groups before the pre-intervention (p > .05). At 1 and 4 weeks after the intervention, the post-traumatic growth scores of the experimental group were higher than those of the control group, and the differences were statistically significant (both p < .05). The comparison of post-traumatic growth scores of the two groups at different time points was statistically significant in terms of time, between-groups, and in terms of interaction (p < .05) (Table 5).
| Groups | Numbers | Pre-intervention | 1-week post-intervention | 4 weeks post-intervention | F-value | p-value |
|---|---|---|---|---|---|---|
| Experimental group | 36 | 56.26 ± 4.11 | 70.58 ± 4.32 | 76.73 ± 4.08 | 56.235 | <0.001 |
| Control group | 35 | 56.85 ± 4.63 | 58.06 ± 4.21 | 58.29 ± 4.54 | 2.657 | 0.213 |
| t-value | 0.365 | 29.407 | 33.261 | |||
| P-value | 0.758 | <0.001 | <0.001 |
- Note: Ftime = 62.087, Ptime<0.001; Fintergroups = 16.397, Pintergroups<0.001; Finteraction = 183.675, P interaction<0.001.
3.4 Comparison of family functioning at different time points between the two groups
The differences between the primary caregiver intimacy scores, adaptability scores, and scale total scores of the two groups before the intervention were not statistically significant (p > .05). 1 week after the intervention, the intimacy scores of the experimental group were higher than those of the control group, and the difference was statistically significant (p < .05). 4 weeks after the intervention, the intimacy scores, adaptability scores, and scale total scores of the experimental group were higher than those of the control group, and the differences were all statistically significant (p < .05). There was an interaction effect when comparing the scores and scale total scores at different time points (p < .05) (Table 6).
| Groups | Numbers | Intimacy scorea | F-value | P-value | ||
|---|---|---|---|---|---|---|
| Pre-intervention | 1-week post-intervention | 4 weeks post-intervention | ||||
| Experimental group | 36 | 62.27 ± 3.30 | 68.69 ± 5.86 | 74.38 ± 7.40 | 34.167 | <.001 |
| Control group | 35 | 62.45 ± 3.56 | 62.89 ± 6.02 | 63.04 ± 5.79 | 1.985 | .557 |
| t-value | 1.375 | 2.472 | 4.334 | |||
| p-value | 0.226 | <0.020 | <0.001 | |||
| Adaptability scoreb | ||||||
| Experimental group | 36 | 45.78 ± 6.31 | 47.34 ± 6.25 | 53.28 ± 6.51 | 32.815 | <0.001 |
| Control group | 35 | 45.16 ± 6.50 | 45.92 ± 5.57 | 45.75 ± 6.13 | 1.343 | 0.425 |
| t-value | −0.023 | 2.371 | 4.756 | |||
| p-value | 0.937 | 0.318 | <0.001 | |||
| Total scorec | ||||||
| Experimental group | 36 | 108.29 ± 10.37 | 116.42 ± 12.61 | 127.72 ± 14.08 | 58.901 | <0.001 |
| Control group | 35 | 107.54 ± 10.75 | 108.71 ± 11.83 | 108.55 ± 12.13 | 2.571 | 0.862 |
| t-value | 0.926 | 3.275 | 8.328 | |||
| p-value | 0.342 | 0.164 | <0.001 | |||
- a Ftime = 16.065, Ptime<0.001; Fintergroups = 16.167, Pintergroups<0.001; Finteraction = 4.283, Pinteraction = 0.024.
- b Ftime = 25.756, Ptime<0.001; Fintergroups = 6.739, Pintergroups = 0.091; Finteraction = 4.076, P interaction = 0.003.
- c Ftime = 20.326, Ptime<0.001; F intergroups = 9.372, P intergroups<0.001; Finteraction = 5.071, Pinteraction = 0.018.
4 DISCUSSION
4.1 Implementing FBDT can effectively alleviate the anxiety of the primary caregiver
This study found that the primary caregivers had varying degrees of anxiety and depression before the intervention, which is consistent with the results of Yeni et al.22 The primary caregivers of late-stage cancer patients not only have to bear the heavy caregiving burden and huge economic burden, but also have to witness their family members being tortured by the disease for a long time, and at the same time face the psychological pain of losing their loved ones. They are prone to anxiety and depression, and other negative emotions. The time effect, group effect, and interaction effect of the anxiety score of the experimental group after intervention were all statistically significant (p < .05), indicating that FBDT can reduce the anxiety of the primary caregiver and improve their mental state, similar to the results of Zhiqian Chen et al.23 The FBDT intervention provides an opportunity for caregivers to express and share their inner feelings and emotions. During the long-term care of patients, caregivers have fewer opportunities to contact the outside world. By using this process of opening up one's heart and honest communication, caregivers' attention can be diverted and anxiety symptoms alleviated.24 Meanwhile, the FBDT program emphasizes guiding patients and caregivers to recall the most memorable and proud moments in their lives, as well as the most significant achievements, in an interview about life accomplishments to evoke their positive emotions and subsequently reduce their anxiety levels. The comparison of depression scores at different time points between the two groups showed no statistically significant effects of time, group, or interaction (p > .05), suggesting that the FBDT program had a limited effect on improving the depressive mood of the primary caregivers of late-stage cancer patients. This may be related to the fact that the caregivers' initial depression level was relatively low (median score 10.00–10.50 points) and the intervention time was relatively short.
4.2 FBDT can enhance the level of post-traumatic growth in primary caregivers
Post-traumatic growth is viewed from a positive psychology perspective, focusing on the positive changes experienced by caregivers.25 There is Intervention 1, and 4 weeks later, the trauma growth score of the intervention group was higher than that of the control group (p > .05). The comparison of the trauma growth scores of the two groups at different time points showed that there was an interaction effect between time and group (p < .001), suggesting that FBDT can significantly improve the trauma growth level of caregivers, similar to the results of Naima Seyedfatemi et al.26 The FBDT program invites patients and caregivers to participate in the intervention together, re-examining their shared life experiences and encouraging caregivers to talk about the support and care they have provided to the patient since they fell ill. This allows caregivers' contributions to be seen and recognized by outsiders, which can help guide caregivers to alleviate their emotional burden and psychological pressure, promote the growth of positive personality, and help them gain confidence, strength, and a sense of control. In addition, the FBDT program invites caregivers to talk about their plans for the future, which to some extent also helps divert their attention and enhance their ability to adjust their mental state, recover from themselves, and renew themselves, thereby re-setting and adjusting their life goals and life values and returning to normal life.
4.3 FBDT can improve the family function, family intimacy, and adaptability of the primary caregiver
Family function, family intimacy, and adaptability are one of the important indicators for evaluating family function. It has important effects on the psychological health and quality of life of cancer patients and their families.27 The average score of family intimacy in the normal Chinese population is (63.90 ± 8.00) points, and the average score of adaptability is (50.90 ± 6.20) points.28 The baseline survey results show that the scores of family intimacy and adaptability of the primary caregivers in this study are both lower than the national norm. During the long-term care of a cancer-stricken relative, family members not only face the heavy burden of time, energy, and finances, but also face the pain of losing their loved ones at any time, which seriously challenges their physical and mental health, work and life, and self-image, and consequently affects family function.29 This suggests that healthcare workers should pay attention to the psychological characteristics and changes in family function of cancer patients' primary caregivers in clinical practice and provide timely psychological counseling to help them better cope with family major events. The results after intervention show that there is an interaction effect between time and group on each dimension and total score of FACES II at different time points (p < .05). In the trial group, the scores of each dimension and the total score of FACES II increased continuously with the intervention time (p < .001), while the scores in the control group increased compared to the baseline, but the change was much smaller than that in the trial group (p > .05). After 4 weeks of intervention, the scores of family intimacy and family adaptability in the trial group were both higher than the national norm, while the scores of family intimacy and family adaptability in the control group were both lower than the national norm. Furthermore, after 4 weeks of intervention, the scores of each dimension and the total score of FACES II in the trial group were all higher than those in the control group (p < .001), suggesting that the FBDT intervention can enhance the family intimacy and adaptability of patients with advanced cancer and improve their family function, similar to the findings of Wang et al.30 in patients with hematological malignancies. A study31 indicates that the influence of caregivers on patients is not only reflected in material support, but more importantly in emotional connection. When patients suffer from serious diseases, they most desire the company of their family members, and involving family members in the psychological care of patients will help improve their psychological condition and enhance their courage to live. FBDT is a specifically designed individualized family psychological intervention method for end-of-life patients and their families, based on the theoretical framework of localized dignity model and incorporating traditional Chinese family cultural values. It involves both the patient and the family in the intervention, and adds themes such as “family support” and the uniquely Chinese “four paths of life” (expressing gratitude, apologizing, expressing love, and saying goodbye) to the interview guide, providing patients and primary caregivers with opportunities to listen to and express their inner thoughts and feelings to each other, strengthening their emotional bonds, and ultimately improving their family adaptation levels.
5 CONCLUSION
The FBDT approach treats the family as the unit of psychological intervention, which aligns with the traditional Chinese concept of “family” and can effectively alleviate the anxiety of the primary caregivers of late-stage cancer patients, enhance their post-traumatic growth levels, and improve family function. It provides medical workers with a scientific and effective family psychological intervention method for end-of-life care, which has important clinical practical significance and good application prospects. However, this study was affected by many factors such as research time, manpower, and patient physical condition, and the research subjects were only from one hospital, with a small sample size and a short intervention period. Future studies can conduct large-sample, multi-center studies on different disease populations to further explore the long-term intervention effects of FBDT.
AUTHOR CONTRIBUTIONS
Conceptualization, B.W.; methodology, H.C.; software, B.W. and Q.C.; validation, B.W., L.Z., and H.C.; formal analysis, Y.X.; investigation, Y.Z. and R.Y.; resources, L.Z. and P.Z.; data curation, Y.X.; writing—original draft preparation, B.W. and Q.C.; writing—review and editing, Q.C. and X.S.; visualization, H.C.; supervision, Q.C.; project administration, H.C.; funding acquisition, H.C. and L.Z. All authors have read and agreed to the published version of the manuscript.
ACKNOWLEDGEMENTS
We are grateful to all of those providing us extensive personal and professional guidance with whom we have had the pleasure to work during this and other related projects. With great gratitude, we acknowledge our debt to all those who have helped us to generate these ideas.
FUNDING INFORMATION
This research was funded by the National Natural Science Foundation of China 82203171; the Jiangsu Province Traditional Chinese Medicine Science and Technology Development Program MS2021097; the Medical Scientific Research Project of Jiangsu Provincial Health of Commission BJ23023; and the University-Industry Collaborative Education Program 241101449285120.
CONFLICT OF INTEREST STATEMENT
The authors declare that they have no competing interests.
ETHICS STATEMENT
The study was approved by the Ethics Committee of the hospital (2022 Section-001).
CONSENT TO PARTICIPATE
All study participants signed an informed consent form.
Open Research
DATA AVAILABILITY STATEMENT
Data sharing not applicable to this article as no datasets were generated or analysed during the current study.
