Objective
To develop a communication prompt based on dignity therapy to facilitate effective conversations between patients with haematologic neoplasms and their family caregivers and to improve the programme and preliminarily explore the benefits and challenges of family participatory dignity therapy (FPDT).
Methods
A mixed‐methods approach was applied to develop and revise the programme. The FPDT was developed and validated using the Delphi survey, and its further improvement was explored with a simple one‐group pre‐ and post‐trial and semi‐structured in‐depth interviews.
Results
Most of the FPDT items were endorsed by experts and patient–family dyads. The Content Validity Index was 93.6% in the first round of the Delphi survey and 100% in the second round. The “hope level,” “spiritual well‐being” and “general health” scores of pre‐ and post‐testing increased from 33.60 ± 4.30 to 37.70 ± 5.10 (t = 3.99, p = .003); from 30.30 ± 3.65 to 38.80 ± 7.29(t = 4.13, p = .003); and from 41.67 ± 8.78 to 53.33 ± 8.05 (t = 3.50, p = .007) respectively. The qualitative data also indicated that the project was meaningful and well received.
Conclusions
We showed that FPDT was a valuable and feasible means of improving communication between patients with haematologic neoplasms and their family caregivers in China by raising the hope level and spiritual well‐being and promoting general health.
Background Patients with acute leukaemia (AL) usually require prolonged periods of hospitalisation. The treatment and clinical symptoms may lead to patients’ supportive care needs (SCNs) not being met and impairs their quality of life (QoL). Studies on QoL and SCNs among AL patients are limited. This study aimed to identify the unmet SCNs and its relation to QoL of adult AL patients in China. Methods This multicentre cross-sectional study recruited 346 participants to complete a self-developed questionnaire, detailing demographic information and disease-related variables. A 34-item Supportive Care Needs Survey (SCNS-SF34) was used to identify unmet SCNs, and the Functional Assessment of Cancer Therapy-Leukaemia (FACT-Leu) questionnaire measured patients’ QoL. Results Unmet SCN rates for the 34 items ranged from17.6% to 81.7%. Patients’ needs were high for health systems and information, but low in the sexual domain. The results reveal nine factors associated with the unmet SCNs of adult AL patients, including marital status, original residence, age, education, occupation, other diseases, chemotherapy course, disease course, and treatment stage ( p <0.05). The total score of the FACT-Leu negatively correlated with the SCNS-SF34 in the physical/daily living (r = - 0.527, p <0.01), psychological (r = - 0.688, p <0.01), sexual (r = - 0.170, p <0.01), patient care and support (r = - 0.352, p <0.01), and health systems and information (r = - 0.220, p <0.01) domains. Conclusions Adult AL patients exhibit a high demand for unmet SCNs, especially in the domain of health systems and information. There was a significant association between patients’ unmet SCNs and QoL. Future research should develop tailored interventions to address the unmet SCNs of adult AL patients, to further improve their QoL.
Background: Patients with acute leukaemia (AL) usually require prolonged periods of hospitalisation.The treatment and clinical symptoms may lead to patients' supportive care needs (SCNs) not being met and impairs their quality of life (QoL). Studies on QoL and SCNs among AL patients are limited.This study aimed to identify the unmet SCNs and its relation to QoL of adult AL patients in China.Methods: This multicentre cross-sectional study recruited 346 participants to complete a selfdeveloped questionnaire, detailing demographic information and disease-related variables. A 34-item Supportive Care Needs Survey (SCNS-SF34) was used to identify unmet SCNs, and the Functional Assessment of Cancer Therapy-Leukaemia (FACT-Leu) questionnaire measured patients' QoL.Results: Unmet SCN rates for the 34 items ranged from17.6% to 81.7%. Patients' needs were high for health systems and information, but low in the sexual domain. The results reveal nine factors associated with the unmet SCNs of adult AL patients, including marital status, original residence, age, education, occupation, other diseases, chemotherapy course, disease course, and treatment stage (p <0.05). The total score of the FACT-Leu negatively correlated with the SCNS-SF34 in the physical/daily living (r = -0.527, p <0.01), psychological (r = -0.688, p <0.01), sexual (r = -0.170, p <0.01), patient care and support (r = -0.352, p <0.01), and health systems and information (r = -0.220, p <0.01) domains. Conclusions: Adult AL patients exhibit a high demand for unmet SCNs, especially in the domain of health systems and information. There was a significant association between patients' unmet SCNs and QoL. Future research should develop tailored interventions to address the unmet SCNs of adult AL patients, to further improve their QoL.
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