Christian Heuser, Nicole Ernstmann, Lina Heier, Hannah Nakata, Franziska Geiser, André Karger, Andrea Icks, Manuela Brüne, Burkhard Haastert, Rebecca Horbach-Bremen, Tim Brümmendorf, Andrea Petermann-Meyer
{"title":"父母罹患癌症的未成年子女与健康相关的生活质量和经历--基于家庭的决定因素多层次分析。","authors":"Christian Heuser, Nicole Ernstmann, Lina Heier, Hannah Nakata, Franziska Geiser, André Karger, Andrea Icks, Manuela Brüne, Burkhard Haastert, Rebecca Horbach-Bremen, Tim Brümmendorf, Andrea Petermann-Meyer","doi":"10.1002/pon.70029","DOIUrl":null,"url":null,"abstract":"<p><strong>Objective: </strong>Children in families with parental cancer may experience emotional, social or physical problems. The aims are to analyze child, parent and family-based determinants of children's health-related quality of life (HRQoL) and their experiences of parental cancer.</p><p><strong>Methods: </strong>As part of a mixed-methods, multicenter, prospective, interventional non-randomized study \"Family-SCOUT,\" a family-centered intervention in the form of care and case management was developed. Children's HRQoL (KIDSCREEN-10) was assessed at baseline (study inclusion). Descriptive analyses and family cluster-adjusted linear mixed models were performed. Qualitative coding of children's experiences reported in an open-ended text field of the questionnaire was performed.</p><p><strong>Results: </strong>Four hundred and seventy-two families with 472 parents with cancer and 649 children were included in the study of which N = 346 were analyzed. The average age of the children was 12.8 years. 48% of the children were female. Family cluster-adjusted mixed linear model showed significant associations between children's HRQoL (dependent variable) and children's age (-0.44, p = 0.023, 95%-CI = -0.82 to -0.06) and between families (ICC<sup>null model</sup> = 0.377, Pseudo-R<sup>2</sup> = 0.443). Children experienced changes in the family situation, such as daily routines and communication among all family members, death of a parent, COVID-19-related difficulties, and supportive social relationships.</p><p><strong>Conclusions: </strong>Child, parent and family-based factors appear to be related to children's HRQoL. Research on children's HRQoL and experiences in the context of parental cancer underscores the need for a multidimensional and family-based approach to support these children.</p>","PeriodicalId":20779,"journal":{"name":"Psycho‐Oncology","volume":"33 11","pages":"e70029"},"PeriodicalIF":3.3000,"publicationDate":"2024-11-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":"{\"title\":\"Health-Related Quality of Life and Experiences of Minor Children With Parental Cancer-A Family-Based Multilevel Analysis of Determinants.\",\"authors\":\"Christian Heuser, Nicole Ernstmann, Lina Heier, Hannah Nakata, Franziska Geiser, André Karger, Andrea Icks, Manuela Brüne, Burkhard Haastert, Rebecca Horbach-Bremen, Tim Brümmendorf, Andrea Petermann-Meyer\",\"doi\":\"10.1002/pon.70029\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<p><strong>Objective: </strong>Children in families with parental cancer may experience emotional, social or physical problems. The aims are to analyze child, parent and family-based determinants of children's health-related quality of life (HRQoL) and their experiences of parental cancer.</p><p><strong>Methods: </strong>As part of a mixed-methods, multicenter, prospective, interventional non-randomized study \\\"Family-SCOUT,\\\" a family-centered intervention in the form of care and case management was developed. Children's HRQoL (KIDSCREEN-10) was assessed at baseline (study inclusion). Descriptive analyses and family cluster-adjusted linear mixed models were performed. Qualitative coding of children's experiences reported in an open-ended text field of the questionnaire was performed.</p><p><strong>Results: </strong>Four hundred and seventy-two families with 472 parents with cancer and 649 children were included in the study of which N = 346 were analyzed. The average age of the children was 12.8 years. 48% of the children were female. Family cluster-adjusted mixed linear model showed significant associations between children's HRQoL (dependent variable) and children's age (-0.44, p = 0.023, 95%-CI = -0.82 to -0.06) and between families (ICC<sup>null model</sup> = 0.377, Pseudo-R<sup>2</sup> = 0.443). Children experienced changes in the family situation, such as daily routines and communication among all family members, death of a parent, COVID-19-related difficulties, and supportive social relationships.</p><p><strong>Conclusions: </strong>Child, parent and family-based factors appear to be related to children's HRQoL. Research on children's HRQoL and experiences in the context of parental cancer underscores the need for a multidimensional and family-based approach to support these children.</p>\",\"PeriodicalId\":20779,\"journal\":{\"name\":\"Psycho‐Oncology\",\"volume\":\"33 11\",\"pages\":\"e70029\"},\"PeriodicalIF\":3.3000,\"publicationDate\":\"2024-11-01\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"Psycho‐Oncology\",\"FirstCategoryId\":\"3\",\"ListUrlMain\":\"https://doi.org/10.1002/pon.70029\",\"RegionNum\":2,\"RegionCategory\":\"医学\",\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"\",\"PubModel\":\"\",\"JCR\":\"Q2\",\"JCRName\":\"ONCOLOGY\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"Psycho‐Oncology","FirstCategoryId":"3","ListUrlMain":"https://doi.org/10.1002/pon.70029","RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q2","JCRName":"ONCOLOGY","Score":null,"Total":0}
Health-Related Quality of Life and Experiences of Minor Children With Parental Cancer-A Family-Based Multilevel Analysis of Determinants.
Objective: Children in families with parental cancer may experience emotional, social or physical problems. The aims are to analyze child, parent and family-based determinants of children's health-related quality of life (HRQoL) and their experiences of parental cancer.
Methods: As part of a mixed-methods, multicenter, prospective, interventional non-randomized study "Family-SCOUT," a family-centered intervention in the form of care and case management was developed. Children's HRQoL (KIDSCREEN-10) was assessed at baseline (study inclusion). Descriptive analyses and family cluster-adjusted linear mixed models were performed. Qualitative coding of children's experiences reported in an open-ended text field of the questionnaire was performed.
Results: Four hundred and seventy-two families with 472 parents with cancer and 649 children were included in the study of which N = 346 were analyzed. The average age of the children was 12.8 years. 48% of the children were female. Family cluster-adjusted mixed linear model showed significant associations between children's HRQoL (dependent variable) and children's age (-0.44, p = 0.023, 95%-CI = -0.82 to -0.06) and between families (ICCnull model = 0.377, Pseudo-R2 = 0.443). Children experienced changes in the family situation, such as daily routines and communication among all family members, death of a parent, COVID-19-related difficulties, and supportive social relationships.
Conclusions: Child, parent and family-based factors appear to be related to children's HRQoL. Research on children's HRQoL and experiences in the context of parental cancer underscores the need for a multidimensional and family-based approach to support these children.
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.