Ellen Gabrielsen Hjelle, Helle Rønn-Smidt, Anita Haahr, Silje Bjørnsen Haavaag, Dorthe Sørensen, Maria Victoria Navarta-Sánchez, Mari Carmen Portillo, Line Kildal Bragstad
{"title":"填补服务空白。作为帕金森病患者家庭照顾者的合作伙伴：斯堪的纳维亚视角。","authors":"Ellen Gabrielsen Hjelle, Helle Rønn-Smidt, Anita Haahr, Silje Bjørnsen Haavaag, Dorthe Sørensen, Maria Victoria Navarta-Sánchez, Mari Carmen Portillo, Line Kildal Bragstad","doi":"10.1177/17423953231174470","DOIUrl":null,"url":null,"abstract":"<p><strong>Objectives: </strong>The purpose of this study was to explore the expectations of and experiences with the public healthcare system of domestic partners of people with Parkinson`s disease (PD) in Denmark and Norway.</p><p><strong>Methods: </strong>A qualitative exploratory design was applied. The sample consisted of 14 people from Denmark (<i>n</i> = 9) and Norway (<i>n</i> = 5) living with a partner with PD. Semi-structured individual interviews were conducted between June and September 2020, digitally recorded, transcribed verbatim and analysed using a reflexive thematic analysis approach combining inductive and deductive approaches.</p><p><strong>Results: </strong>The main themes were 'negotiating systems of support' and 'balancing being both a partner and a family carer'. Partners take responsibility for the people with whom they live and attempt to fill gaps in the public healthcare system. The most frequently described needs were more information, service coordination as the illness progressed and acknowledgement of the complex role.</p><p><strong>Discussion: </strong>A recommendation for practice is recognition of the complex roles of partners to people with PD and reaching out to both regularly to determine needs. This may enhance the collaboration between partner carers, people with PD and healthcare providers, ensure sustainability of the system and optimise living with PD in the family.</p>","PeriodicalId":48530,"journal":{"name":"Chronic Illness","volume":" ","pages":"258-270"},"PeriodicalIF":1.8000,"publicationDate":"2024-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":"{\"title\":\"Filling the gap in service provision. Partners as family carers to people with Parkinson's disease: A Scandinavian perspective.\",\"authors\":\"Ellen Gabrielsen Hjelle, Helle Rønn-Smidt, Anita Haahr, Silje Bjørnsen Haavaag, Dorthe Sørensen, Maria Victoria Navarta-Sánchez, Mari Carmen Portillo, Line Kildal Bragstad\",\"doi\":\"10.1177/17423953231174470\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<p><strong>Objectives: </strong>The purpose of this study was to explore the expectations of and experiences with the public healthcare system of domestic partners of people with Parkinson`s disease (PD) in Denmark and Norway.</p><p><strong>Methods: </strong>A qualitative exploratory design was applied. The sample consisted of 14 people from Denmark (<i>n</i> = 9) and Norway (<i>n</i> = 5) living with a partner with PD. Semi-structured individual interviews were conducted between June and September 2020, digitally recorded, transcribed verbatim and analysed using a reflexive thematic analysis approach combining inductive and deductive approaches.</p><p><strong>Results: </strong>The main themes were 'negotiating systems of support' and 'balancing being both a partner and a family carer'. Partners take responsibility for the people with whom they live and attempt to fill gaps in the public healthcare system. The most frequently described needs were more information, service coordination as the illness progressed and acknowledgement of the complex role.</p><p><strong>Discussion: </strong>A recommendation for practice is recognition of the complex roles of partners to people with PD and reaching out to both regularly to determine needs. This may enhance the collaboration between partner carers, people with PD and healthcare providers, ensure sustainability of the system and optimise living with PD in the family.</p>\",\"PeriodicalId\":48530,\"journal\":{\"name\":\"Chronic Illness\",\"volume\":\" \",\"pages\":\"258-270\"},\"PeriodicalIF\":1.8000,\"publicationDate\":\"2024-06-01\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"Chronic Illness\",\"FirstCategoryId\":\"3\",\"ListUrlMain\":\"https://doi.org/10.1177/17423953231174470\",\"RegionNum\":4,\"RegionCategory\":\"医学\",\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"2023/5/9 0:00:00\",\"PubModel\":\"Epub\",\"JCR\":\"Q3\",\"JCRName\":\"HEALTH CARE SCIENCES & SERVICES\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"Chronic Illness","FirstCategoryId":"3","ListUrlMain":"https://doi.org/10.1177/17423953231174470","RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"2023/5/9 0:00:00","PubModel":"Epub","JCR":"Q3","JCRName":"HEALTH CARE SCIENCES & SERVICES","Score":null,"Total":0}
Filling the gap in service provision. Partners as family carers to people with Parkinson's disease: A Scandinavian perspective.
Objectives: The purpose of this study was to explore the expectations of and experiences with the public healthcare system of domestic partners of people with Parkinson`s disease (PD) in Denmark and Norway.
Methods: A qualitative exploratory design was applied. The sample consisted of 14 people from Denmark (n = 9) and Norway (n = 5) living with a partner with PD. Semi-structured individual interviews were conducted between June and September 2020, digitally recorded, transcribed verbatim and analysed using a reflexive thematic analysis approach combining inductive and deductive approaches.
Results: The main themes were 'negotiating systems of support' and 'balancing being both a partner and a family carer'. Partners take responsibility for the people with whom they live and attempt to fill gaps in the public healthcare system. The most frequently described needs were more information, service coordination as the illness progressed and acknowledgement of the complex role.
Discussion: A recommendation for practice is recognition of the complex roles of partners to people with PD and reaching out to both regularly to determine needs. This may enhance the collaboration between partner carers, people with PD and healthcare providers, ensure sustainability of the system and optimise living with PD in the family.
期刊介绍：
Chronic illnesses are prolonged, do not resolve spontaneously, and are rarely completely cured. The most common are cardiovascular diseases (hypertension, coronary artery disease, stroke and heart failure), the arthritides, asthma and chronic obstructive pulmonary disease, diabetes and epilepsy. There is increasing evidence that mental illnesses such as depression are best understood as chronic health problems. HIV/AIDS has become a chronic condition in those countries where effective medication is available.
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