Henning Cuhls, Michaela Hesse, Gregory Heuser, Lukas Radbruch, Gülay Ateş
{"title":"有未成年子女的临终父母与姑息治疗患者的生命意义比较--利用 SMiLE 进行定量分析。","authors":"Henning Cuhls, Michaela Hesse, Gregory Heuser, Lukas Radbruch, Gülay Ateş","doi":"10.1177/26323524241264883","DOIUrl":null,"url":null,"abstract":"<p><strong>Background: </strong>Caring for terminally ill patients with minor children can be very stressful. The perceived quality of life is significantly influenced by the Meaning in Life (MiL). No studies were found that focus on the prioritized special needs of this patient group.</p><p><strong>Objectives: </strong>The aim is to compare and contrast terminally ill parents with minor children and palliative care patients in Germany, in order to provide appropriate support beyond medical, nursing or therapeutic interventions.</p><p><strong>Methods: </strong>Terminally ill parents diagnosed were surveyed using a validated instrument 'Schedule for Meaning in Life Evaluation (SMiLE)'. The study listed various areas that contribute to the MiL, followed by an evaluation of their importance and satisfaction levels. The researchers then compared these findings with data collected from palliative care patients.</p><p><strong>Results: </strong>In Germany, 54 patients, mostly female and with a mean age of 43, were included in this study between February 2017 and September 2020. The median age of the 96 children during the survey phase was 7 years. The comparison group consists of 100 palliative care patients in Germany; mostly aged 50 years and older. For terminally ill patients most important areas were in decreasing order family (100%), social relations (80%), leisure time (61%), nature/animals (39%) and home/garden (30%). Although the overall indices are close between both groups, there are significant and highly correlated differences between them. Parents felt limited by their illness in being a mother or father, as they wanted to be.</p><p><strong>Conclusion: </strong>The involvement with SMiLE led patients to consider their coping resources. The areas relevant to terminally ill parents differed from those relevant to palliative care patients. All participants identified family as the most important factor for MiL. The results suggest that evaluating MiL can serve as a coping strategy and help terminally ill parents with minor children.</p>","PeriodicalId":36693,"journal":{"name":"Palliative Care and Social Practice","volume":"18 ","pages":"26323524241264883"},"PeriodicalIF":2.7000,"publicationDate":"2024-07-31","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11289801/pdf/","citationCount":"0","resultStr":"{\"title\":\"Meaning in life of terminally ill parents with minor children compared to palliative care patients - a quantitative analysis using SMiLE.\",\"authors\":\"Henning Cuhls, Michaela Hesse, Gregory Heuser, Lukas Radbruch, Gülay Ateş\",\"doi\":\"10.1177/26323524241264883\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<p><strong>Background: </strong>Caring for terminally ill patients with minor children can be very stressful. The perceived quality of life is significantly influenced by the Meaning in Life (MiL). No studies were found that focus on the prioritized special needs of this patient group.</p><p><strong>Objectives: </strong>The aim is to compare and contrast terminally ill parents with minor children and palliative care patients in Germany, in order to provide appropriate support beyond medical, nursing or therapeutic interventions.</p><p><strong>Methods: </strong>Terminally ill parents diagnosed were surveyed using a validated instrument 'Schedule for Meaning in Life Evaluation (SMiLE)'. The study listed various areas that contribute to the MiL, followed by an evaluation of their importance and satisfaction levels. The researchers then compared these findings with data collected from palliative care patients.</p><p><strong>Results: </strong>In Germany, 54 patients, mostly female and with a mean age of 43, were included in this study between February 2017 and September 2020. The median age of the 96 children during the survey phase was 7 years. The comparison group consists of 100 palliative care patients in Germany; mostly aged 50 years and older. For terminally ill patients most important areas were in decreasing order family (100%), social relations (80%), leisure time (61%), nature/animals (39%) and home/garden (30%). Although the overall indices are close between both groups, there are significant and highly correlated differences between them. Parents felt limited by their illness in being a mother or father, as they wanted to be.</p><p><strong>Conclusion: </strong>The involvement with SMiLE led patients to consider their coping resources. The areas relevant to terminally ill parents differed from those relevant to palliative care patients. All participants identified family as the most important factor for MiL. The results suggest that evaluating MiL can serve as a coping strategy and help terminally ill parents with minor children.</p>\",\"PeriodicalId\":36693,\"journal\":{\"name\":\"Palliative Care and Social Practice\",\"volume\":\"18 \",\"pages\":\"26323524241264883\"},\"PeriodicalIF\":2.7000,\"publicationDate\":\"2024-07-31\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11289801/pdf/\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"Palliative Care and Social Practice\",\"FirstCategoryId\":\"1085\",\"ListUrlMain\":\"https://doi.org/10.1177/26323524241264883\",\"RegionNum\":0,\"RegionCategory\":null,\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"2024/1/1 0:00:00\",\"PubModel\":\"eCollection\",\"JCR\":\"Q2\",\"JCRName\":\"HEALTH CARE SCIENCES & SERVICES\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"Palliative Care and Social Practice","FirstCategoryId":"1085","ListUrlMain":"https://doi.org/10.1177/26323524241264883","RegionNum":0,"RegionCategory":null,"ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"2024/1/1 0:00:00","PubModel":"eCollection","JCR":"Q2","JCRName":"HEALTH CARE SCIENCES & SERVICES","Score":null,"Total":0}
Meaning in life of terminally ill parents with minor children compared to palliative care patients - a quantitative analysis using SMiLE.
Background: Caring for terminally ill patients with minor children can be very stressful. The perceived quality of life is significantly influenced by the Meaning in Life (MiL). No studies were found that focus on the prioritized special needs of this patient group.
Objectives: The aim is to compare and contrast terminally ill parents with minor children and palliative care patients in Germany, in order to provide appropriate support beyond medical, nursing or therapeutic interventions.
Methods: Terminally ill parents diagnosed were surveyed using a validated instrument 'Schedule for Meaning in Life Evaluation (SMiLE)'. The study listed various areas that contribute to the MiL, followed by an evaluation of their importance and satisfaction levels. The researchers then compared these findings with data collected from palliative care patients.
Results: In Germany, 54 patients, mostly female and with a mean age of 43, were included in this study between February 2017 and September 2020. The median age of the 96 children during the survey phase was 7 years. The comparison group consists of 100 palliative care patients in Germany; mostly aged 50 years and older. For terminally ill patients most important areas were in decreasing order family (100%), social relations (80%), leisure time (61%), nature/animals (39%) and home/garden (30%). Although the overall indices are close between both groups, there are significant and highly correlated differences between them. Parents felt limited by their illness in being a mother or father, as they wanted to be.
Conclusion: The involvement with SMiLE led patients to consider their coping resources. The areas relevant to terminally ill parents differed from those relevant to palliative care patients. All participants identified family as the most important factor for MiL. The results suggest that evaluating MiL can serve as a coping strategy and help terminally ill parents with minor children.