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儿科肿瘤姑息治疗:全科医生和丧亲父母的经历

Pediatric Oncology Palliative Care: Experiences of General Practitioners and Bereaved Parents.

作者信息

Neilson Sue J, Gibson Faith, Greenfield Sheila M

机构信息

Birmingham Children's Hospital NHS Foundation Trust, Steelhouse Lane, Birmingham, B4 6NH, UK ; School of Health and Population Sciences, University of Birmingham, Edgbaston, Birmingham, B15 2TT, UK.

Centre for Outcomes and Experience Research in Children's Health, Illness and Disability, Great Ormond Street Hospital for Children NHS Foundation Trust, Faculty of Health and Social Care, London South Bank University, 103 Borough Road, SE1 0AA, London.

出版信息

J Palliat Care Med. 2015 Mar 1;5(2):214. doi: 10.4172/2165-7386.1000214.

Abstract

OBJECTIVE

This qualitative study set in the West Midlands region of the United Kingdom, aimed to examine the role of the general practitioner (GP) in children's oncology palliative care from the perspective of GPs who had cared for a child with cancer receiving palliative care at home and bereaved parents.

METHODS

One-to-one semi-structured interviews were undertaken with 18 GPs and 11 bereaved parents following the death. A grounded theory data analysis was undertaken; identifying generated themes through chronological comparative data analysis.

RESULTS

Similarity in GP and parent viewpoints was found, the GPs role seen as one of providing medication and support. Time pressures GPs faced influenced their level of engagement with the family during palliative and bereavement care and their ability to address their identified learning deficits. Lack of familiarity with the family, coupled with an acknowledgment that it was a rare and could be a frightening experience, also influenced their level of interaction. There was no consistency in GP practice nor evidence of practice being guided by local or national policies. Parents lack of clarity of their GPs role resulted in missed opportunities for support.

CONCLUSIONS

Time pressures influence GP working practices. Enhanced communication and collaboration between the GP and regional childhood cancer centre may help address identified GP challenges, such as learning deficits, and promote more time-efficient working practices through role clarity. Parents need greater awareness of their GP's wide-ranging role; one that transcends palliative care incorporating bereavement support and on-going medical care for family members.

摘要

目的

这项定性研究在英国西米德兰兹地区开展,旨在从那些照料过在家接受姑息治疗的癌症患儿的全科医生(GP)以及患儿离世后其父母的角度,探讨全科医生在儿童肿瘤姑息治疗中的作用。

方法

在患儿死亡后,对18名全科医生和11名患儿离世后的父母进行了一对一的半结构化访谈。采用扎根理论进行数据分析;通过按时间顺序的比较数据分析来确定产生的主题。

结果

发现全科医生和父母的观点存在相似之处,全科医生的角色被视为提供药物和支持。全科医生面临的时间压力影响了他们在姑息治疗和丧亲照护期间与家庭的参与程度,以及他们解决已确定的知识不足问题的能力。对家庭缺乏了解,再加上认识到这是一种罕见且可能令人恐惧的经历,也影响了他们的互动程度。全科医生的实践缺乏一致性,也没有证据表明实践是由地方或国家政策指导的。父母对全科医生角色的不明确导致了错过获得支持的机会。

结论

时间压力影响全科医生的工作实践。全科医生与地区儿童癌症中心之间加强沟通与协作,可能有助于应对已确定的全科医生面临的挑战,如知识不足,并通过明确角色促进更高效的工作实践。父母需要更清楚地了解全科医生广泛的角色;这一角色超越了姑息治疗,包括丧亲支持以及为家庭成员提供持续的医疗护理。

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本文引用的文献

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Paediatric palliative medicine in the UK: past, present, future.英国的儿科姑息治疗:过去、现在与未来。
Arch Dis Child. 2012 Apr;97(4):381-4. doi: 10.1136/archdischild-2011-300432. Epub 2011 Oct 28.

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