Centre for Cardiovascular and Chronic Care, Faculty of Health, University of Technology Sydney, PO Box 123, Broadway, NSW 2007, Australia.
Discipline, Palliative and Supportive Services, Flinders University, 700 Goodwood Rd, Daw Park, South Australia 5041, Australia.
BMC Palliat Care. 2014 Jun 16;13:30. doi: 10.1186/1472-684X-13-30. eCollection 2014.
Lower socioeconomic populations live and die in contexts that render them vulnerable to poorer health and wellbeing. Contexts of care at the end of life are overwhelmingly determined by the capacity and nature of formal and informal networks and relations to support care. To date, studies exploring the nature of networks and relations of support in lower socioeconomic populations at the end of life are absent. This qualitative study sought to identify the nature of individual, community and civic networks and relations that defined the contexts of care for this group.
Semi-structured qualitative interviews were conducted with 16 patients and 6 informal carers who identified that they had social and economic needs and were from a lower socioeconomic area. A social capital questionnaire identifying individual, community and civic networks and relations formed the interview guide. Interviews were audio-taped, transcribed and analysed using framework analysis.
Participants identified that individual and community networks and relations of support were mainly inadequate to meet care needs. Specifically, data revealed: (1) individual (informal caregivers) networks and relations were small and fragile due to the nature of conflict and crisis; (2) community trust and engagement was limited and shifted by illness and caregiving; (3) and formal care services were inconsistent and provided limited practical support. Some transitions in community relations for support were noted. Levels of civic and government engagement and support were overall positive and enabled access to welfare resources.
Networks and relations of support are essential for ensuring quality end of life care is achieved. Lower socioeconomic groups are at a distinct disadvantage where these networks and relations are limited, as they lack the resources necessary to augment these gaps. Understanding of the nature of assets and limitations, in networks and relations of support, is necessary to inform interventions to improve end of life care for lower socioeconomic populations.
较低社会经济地位的人群生活和死亡的环境使他们容易受到较差的健康和福祉的影响。生命末期的护理环境主要由正式和非正式网络以及支持护理的关系的能力和性质决定。迄今为止，探索生命末期较低社会经济地位人群的网络和支持关系性质的研究尚不存在。本定性研究旨在确定界定该人群护理环境的个人、社区和公民网络和关系的性质。
对 16 名患者和 6 名自认为有社会和经济需求且来自较低社会经济地区的非正规护理者进行了半结构式定性访谈。社会资本问卷确定了个人、社区和公民网络和关系，形成了访谈指南。访谈进行了录音、转录，并使用框架分析进行了分析。
参与者确定，个人和社区网络和支持关系主要不足以满足护理需求。具体而言，数据显示：（1）由于冲突和危机的性质，个人（非正规护理人员）网络和关系很小且脆弱；（2）社区信任和参与因疾病和护理而受到限制和转移；（3）正规护理服务不一致，提供的实际支持有限。还注意到一些社区关系的转变以获得支持。公民和政府参与和支持的总体水平是积极的，并使人们能够获得福利资源。
网络和支持关系对于确保实现高质量的临终关怀至关重要。较低社会经济群体处于明显的劣势，因为这些网络和关系有限，他们缺乏必要的资源来弥补这些差距。了解网络和支持关系中资产和限制的性质，对于为较低社会经济群体改善临终关怀的干预措施是必要的。
