"来安宁疗护之前,我一无所有"。对病人、家属照顾者、临床医生和志愿者最看重居家、日间治疗或住院安宁疗护服务的哪些方面进行定性探讨。

IF 2.7 Q2 HEALTH CARE SCIENCES & SERVICES Palliative Care and Social Practice Pub Date : 2024-02-28 eCollection Date: 2024-01-01 DOI:10.1177/26323524241231820
Nicole Marie Hughes, Jane Noyes, Carys Stringer, Trystan Pritchard
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引用次数: 0

摘要

背景:在全球范围内,对临终关怀的需求持续增长,造成了巨大的资源负担。虽然一些国家能够依靠政府的固定捐助,但在英国,用于姑息关怀的法定资金分配不均。这些不稳定的资金流和日益增长的需求意味着临终关怀机构需要证明其价值:本研究探讨了病人和家属护理者的经历,以确定他们在威尔士接受临终关怀服务时最看重的是什么:在这项大型多地点定性研究中,对安宁疗护患者(45 人)、家属照护者(18 人)、安宁疗护工作人员(31 人)和志愿者(10 人)进行了 94 次半结构式访谈和 2 次焦点小组讨论。录音被逐字转录,并使用框架分析法进行分析:七个主题描述了病人和家属护理者的经历以及他们最看重的东西:与工作人员和志愿者的关系;更大的支持网络,从而减少社会隔离和孤独感;提供信息和建议,从而提高病人的自主性;症状管理,从而减少心理困扰;改善病人的功能、活动能力和整体身体健康;缓解喘息,从而促进人际关系的改善:这是探索病人和家属照顾者对安宁疗护价值的最大规模研究。研究结果表明,安宁疗护为临近或处于生命末期的患者提供了真正以需求为导向、以优势为基础的服务,受到了患者和家属的高度评价。
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"Before I came to the hospice, I had nobody". A qualitative exploration of what patients, family-caregivers, clinicians and volunteers valued most about home, day therapy or inpatient hospice services.

Background: Globally, the demand for hospice care continues to grow resulting in substantial resource burden. Whilst some countries are able to rely on fixed government contributions, statutory funding for palliative care in the United Kingdom is unequally distributed. These unstable funding streams and increased demand means that hospices need to evidence their value.

Objective: This study explored the experiences of patients and family-caregivers to determine what they valued most from accessing hospice services in Wales.

Methods: In this large multi-site qualitative study, 94 semi-structured interviews and 2 focus groups were conducted with hospice patients (n = 45), family-caregivers (n = 18), hospice staff (n = 31) and volunteers (n = 10). The audio recordings were transcribed verbatim and analysed using Framework analysis.

Results: Seven themes described patient and family-caregiver experiences and what they valued most: relationships with staff and volunteers, greater support networks which reduced social isolation and loneliness, provision of information and advice which improved patient autonomy, symptom management and subsequent reduction in psychological distress, improvements in patient functionality, mobility and overall physical health and respite relief which promoted improved relationships.

Conclusion: This is the largest study to explore what patients and family-caregivers value from hospice care. Findings indicate that hospice care provides a truly needs-led and strengths-based service to those who are nearing and at the end-of-life, which is highly valued by patients and family members.

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来源期刊
Palliative Care and Social Practice
Palliative Care and Social Practice Nursing-Advanced and Specialized Nursing
CiteScore
2.90
自引率
0.00%
发文量
37
审稿时长
9 weeks
期刊最新文献
Medical influence: what does success look like? Palliative care consultation in the last week of life and associated factors: a cross-sectional general population study. Using relational ethics to approach equity in palliative care. Fostering timely integrated palliative care in nursing homes through critical companionship: experiences from a Padi-Palli interventional study in France. Experience or perception: What healthcare providers need when using the Utrecht Symptom Diary-4 Dimensional, a mixed-methods study.
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