Sam Geuens, Kathelijne Leyen, Koen Raymaekers, Sofie Prikken, Joanna Willen, Nathalie Goemans, Liesbeth De Waele, Jurgen Lemiere, Koen Luyckx
{"title":"患有神经肌肉疾病的青少年和新生成人的疾病认知和疾病认同。","authors":"Sam Geuens, Kathelijne Leyen, Koen Raymaekers, Sofie Prikken, Joanna Willen, Nathalie Goemans, Liesbeth De Waele, Jurgen Lemiere, Koen Luyckx","doi":"10.1177/13591045221125631","DOIUrl":null,"url":null,"abstract":"<p><strong>Background: </strong>Neuromuscular disorders (NMD) are intrusive medical conditions with implications for psychosocial development.</p><p><strong>Objectives: </strong>This paper explores illness perceptions and illness identity dimensions of youth with NMD. First, we compare illness identity outcomes and illness perceptions of NMD patients with a comparison group of adolescents with type 1 diabetes mellitus (DM). Second, we report about the relationships between NMD-related variables and illness perceptions and illness identity.</p><p><strong>Methods: </strong>Scores on the Brief Illness Perception Questionnaire and the Illness Identity Questionnaire were compared between a group of NMD patients (<i>N</i> = 59; 12-22 years) and an age- and gender-matched group of DM patients (<i>N</i> = 118). NMD-related variables included time since diagnosis, prognosis, wheelchair use, and physical limitations.</p><p><strong>Results: </strong>Youth with NMD scored significantly higher on two of the four illness identity dimensions than youth with DM. NMD patients reported significantly less positive illness perceptions, experienced more physical symptoms, and had a lower score on understanding of their illness. Within the NMD group, wheelchair-users have a better understanding of their disease than those who are not wheelchair-bound.</p><p><strong>Conclusions: </strong>The present study is the first to investigate illness identity and illness perceptions in NMD. More research is needed to provide insight in the identity formation process of the growing group of adolescents with NMDs.</p>","PeriodicalId":48840,"journal":{"name":"Clinical Child Psychology and Psychiatry","volume":"28 3","pages":"983-996"},"PeriodicalIF":1.8000,"publicationDate":"2023-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"1","resultStr":"{\"title\":\"Illness Perceptions and Illness Identity in Adolescents and Emerging Adults With Neuromuscular Disorders.\",\"authors\":\"Sam Geuens, Kathelijne Leyen, Koen Raymaekers, Sofie Prikken, Joanna Willen, Nathalie Goemans, Liesbeth De Waele, Jurgen Lemiere, Koen Luyckx\",\"doi\":\"10.1177/13591045221125631\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<p><strong>Background: </strong>Neuromuscular disorders (NMD) are intrusive medical conditions with implications for psychosocial development.</p><p><strong>Objectives: </strong>This paper explores illness perceptions and illness identity dimensions of youth with NMD. First, we compare illness identity outcomes and illness perceptions of NMD patients with a comparison group of adolescents with type 1 diabetes mellitus (DM). Second, we report about the relationships between NMD-related variables and illness perceptions and illness identity.</p><p><strong>Methods: </strong>Scores on the Brief Illness Perception Questionnaire and the Illness Identity Questionnaire were compared between a group of NMD patients (<i>N</i> = 59; 12-22 years) and an age- and gender-matched group of DM patients (<i>N</i> = 118). NMD-related variables included time since diagnosis, prognosis, wheelchair use, and physical limitations.</p><p><strong>Results: </strong>Youth with NMD scored significantly higher on two of the four illness identity dimensions than youth with DM. NMD patients reported significantly less positive illness perceptions, experienced more physical symptoms, and had a lower score on understanding of their illness. Within the NMD group, wheelchair-users have a better understanding of their disease than those who are not wheelchair-bound.</p><p><strong>Conclusions: </strong>The present study is the first to investigate illness identity and illness perceptions in NMD. More research is needed to provide insight in the identity formation process of the growing group of adolescents with NMDs.</p>\",\"PeriodicalId\":48840,\"journal\":{\"name\":\"Clinical Child Psychology and Psychiatry\",\"volume\":\"28 3\",\"pages\":\"983-996\"},\"PeriodicalIF\":1.8000,\"publicationDate\":\"2023-07-01\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"\",\"citationCount\":\"1\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"Clinical Child Psychology and Psychiatry\",\"FirstCategoryId\":\"3\",\"ListUrlMain\":\"https://doi.org/10.1177/13591045221125631\",\"RegionNum\":4,\"RegionCategory\":\"医学\",\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"\",\"PubModel\":\"\",\"JCR\":\"Q3\",\"JCRName\":\"PSYCHIATRY\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"Clinical Child Psychology and Psychiatry","FirstCategoryId":"3","ListUrlMain":"https://doi.org/10.1177/13591045221125631","RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q3","JCRName":"PSYCHIATRY","Score":null,"Total":0}
Illness Perceptions and Illness Identity in Adolescents and Emerging Adults With Neuromuscular Disorders.
Background: Neuromuscular disorders (NMD) are intrusive medical conditions with implications for psychosocial development.
Objectives: This paper explores illness perceptions and illness identity dimensions of youth with NMD. First, we compare illness identity outcomes and illness perceptions of NMD patients with a comparison group of adolescents with type 1 diabetes mellitus (DM). Second, we report about the relationships between NMD-related variables and illness perceptions and illness identity.
Methods: Scores on the Brief Illness Perception Questionnaire and the Illness Identity Questionnaire were compared between a group of NMD patients (N = 59; 12-22 years) and an age- and gender-matched group of DM patients (N = 118). NMD-related variables included time since diagnosis, prognosis, wheelchair use, and physical limitations.
Results: Youth with NMD scored significantly higher on two of the four illness identity dimensions than youth with DM. NMD patients reported significantly less positive illness perceptions, experienced more physical symptoms, and had a lower score on understanding of their illness. Within the NMD group, wheelchair-users have a better understanding of their disease than those who are not wheelchair-bound.
Conclusions: The present study is the first to investigate illness identity and illness perceptions in NMD. More research is needed to provide insight in the identity formation process of the growing group of adolescents with NMDs.
期刊介绍:
Clinical Child Psychology and Psychiatry brings together clinically oriented, peer reviewed work of the highest distinction from an international and multidisciplinary perspective, offering comprehensive coverage of clinical and treatment issues across the range of treatment modalities.
Clinical Child Psychology and Psychiatry is interested in advancing theory, practice and clinical research in the realm of child and adolescent psychology and psychiatry and related disciplines.
The journal directs its attention to matters of clinical practice, including related topics such as the ethics of treatment and the integration of research into practice.
Multidisciplinary in approach, the journal includes work by, and is of interest to, child psychologists, psychiatrists and psychotherapists, nurses, social workers and all other professionals in the fields of child and adolescent psychology and psychiatry.