Lauren J Breen, Anne Same, Carolyn J Peddle-McIntyre, Calvin Sidhu, Deirdre Fitzgerald, Ai Ling Tan, Renee N Carey, Chanelle Wilson, Y C Gary Lee
{"title":"胸膜间皮瘤患者及其家庭照顾者的社会心理需求:混合方法研究。","authors":"Lauren J Breen, Anne Same, Carolyn J Peddle-McIntyre, Calvin Sidhu, Deirdre Fitzgerald, Ai Ling Tan, Renee N Carey, Chanelle Wilson, Y C Gary Lee","doi":"10.1002/pon.70031","DOIUrl":null,"url":null,"abstract":"<p><strong>Background: </strong>Mesothelioma is a cancer of growing global incidence, especially in developing countries, with unique complex psychosocial impacts on patients and their carers.</p><p><strong>Aims: </strong>To provide a comprehensive understanding of the psychosocial needs of people living with pleural mesothelioma and family carers.</p><p><strong>Methods: </strong>A mixed methods design with 61 semi-structured interviews and psychometrically validated questionnaires to assess pleural mesothelioma patients' (n = 36) quality of life and frailty and carers' (n = 25) caregiving experiences, quality of life, and pre-loss prolonged grief symptoms.</p><p><strong>Results: </strong>People with mesothelioma (29 men, 7 women, aged 46-89 years) indicated moderate quality of life; 18 (50%) met criteria for frailty. Current carers (21 women, 4 men; aged 41-79 years) generally reported positive caregiving experiences and high quality of life; 5 (20%) scored in the range indicative of risk for prolonged grief disorder. Four themes were generated: a desire for tailored information with bespoke detail, assistance to coordinate tasks of treatment, improved social and peer support, and effective psychological services. Needs varied, with main concerns being about breaking the news to spouses/children, the impact of the disease and death on family, loss of personal future, managing psychological symptoms, and avoiding burden.</p><p><strong>Conclusions: </strong>These specific and unmet psychosocial needs provide a strong basis for individualised care pathways to address these needs via the integration of psychology into the multidisciplinary care team and the development and evaluation of mental health and wellbeing interventions for mesothelioma patients and carers. Doing so will reduce psychosocial distress and improve residual vitality.</p>","PeriodicalId":20779,"journal":{"name":"Psycho‐Oncology","volume":"33 11","pages":"e70031"},"PeriodicalIF":3.3000,"publicationDate":"2024-11-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":"{\"title\":\"Psychosocial Needs of People Living With Pleural Mesothelioma and Family Carers: A Mixed Methods Study.\",\"authors\":\"Lauren J Breen, Anne Same, Carolyn J Peddle-McIntyre, Calvin Sidhu, Deirdre Fitzgerald, Ai Ling Tan, Renee N Carey, Chanelle Wilson, Y C Gary Lee\",\"doi\":\"10.1002/pon.70031\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<p><strong>Background: </strong>Mesothelioma is a cancer of growing global incidence, especially in developing countries, with unique complex psychosocial impacts on patients and their carers.</p><p><strong>Aims: </strong>To provide a comprehensive understanding of the psychosocial needs of people living with pleural mesothelioma and family carers.</p><p><strong>Methods: </strong>A mixed methods design with 61 semi-structured interviews and psychometrically validated questionnaires to assess pleural mesothelioma patients' (n = 36) quality of life and frailty and carers' (n = 25) caregiving experiences, quality of life, and pre-loss prolonged grief symptoms.</p><p><strong>Results: </strong>People with mesothelioma (29 men, 7 women, aged 46-89 years) indicated moderate quality of life; 18 (50%) met criteria for frailty. Current carers (21 women, 4 men; aged 41-79 years) generally reported positive caregiving experiences and high quality of life; 5 (20%) scored in the range indicative of risk for prolonged grief disorder. Four themes were generated: a desire for tailored information with bespoke detail, assistance to coordinate tasks of treatment, improved social and peer support, and effective psychological services. Needs varied, with main concerns being about breaking the news to spouses/children, the impact of the disease and death on family, loss of personal future, managing psychological symptoms, and avoiding burden.</p><p><strong>Conclusions: </strong>These specific and unmet psychosocial needs provide a strong basis for individualised care pathways to address these needs via the integration of psychology into the multidisciplinary care team and the development and evaluation of mental health and wellbeing interventions for mesothelioma patients and carers. 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Psychosocial Needs of People Living With Pleural Mesothelioma and Family Carers: A Mixed Methods Study.
Background: Mesothelioma is a cancer of growing global incidence, especially in developing countries, with unique complex psychosocial impacts on patients and their carers.
Aims: To provide a comprehensive understanding of the psychosocial needs of people living with pleural mesothelioma and family carers.
Methods: A mixed methods design with 61 semi-structured interviews and psychometrically validated questionnaires to assess pleural mesothelioma patients' (n = 36) quality of life and frailty and carers' (n = 25) caregiving experiences, quality of life, and pre-loss prolonged grief symptoms.
Results: People with mesothelioma (29 men, 7 women, aged 46-89 years) indicated moderate quality of life; 18 (50%) met criteria for frailty. Current carers (21 women, 4 men; aged 41-79 years) generally reported positive caregiving experiences and high quality of life; 5 (20%) scored in the range indicative of risk for prolonged grief disorder. Four themes were generated: a desire for tailored information with bespoke detail, assistance to coordinate tasks of treatment, improved social and peer support, and effective psychological services. Needs varied, with main concerns being about breaking the news to spouses/children, the impact of the disease and death on family, loss of personal future, managing psychological symptoms, and avoiding burden.
Conclusions: These specific and unmet psychosocial needs provide a strong basis for individualised care pathways to address these needs via the integration of psychology into the multidisciplinary care team and the development and evaluation of mental health and wellbeing interventions for mesothelioma patients and carers. Doing so will reduce psychosocial distress and improve residual vitality.
期刊介绍:
Psycho-Oncology is concerned with the psychological, social, behavioral, and ethical aspects of cancer. This subspeciality addresses the two major psychological dimensions of cancer: the psychological responses of patients to cancer at all stages of the disease, and that of their families and caretakers; and the psychological, behavioral and social factors that may influence the disease process. Psycho-oncology is an area of multi-disciplinary interest and has boundaries with the major specialities in oncology: the clinical disciplines (surgery, medicine, pediatrics, radiotherapy), epidemiology, immunology, endocrinology, biology, pathology, bioethics, palliative care, rehabilitation medicine, clinical trials research and decision making, as well as psychiatry and psychology.
This international journal is published twelve times a year and will consider contributions to research of clinical and theoretical interest. Topics covered are wide-ranging and relate to the psychosocial aspects of cancer and AIDS-related tumors, including: epidemiology, quality of life, palliative and supportive care, psychiatry, psychology, sociology, social work, nursing and educational issues.
Special reviews are offered from time to time. There is a section reviewing recently published books. A society news section is available for the dissemination of information relating to meetings, conferences and other society-related topics. Summary proceedings of important national and international symposia falling within the aims of the journal are presented.