Knowles Sarah, Combs Ryan, Kirk Sue, Griffiths May, Patel Neesha, Sanders Caroline
Centre for Primary Care, Institute of Population Health, University of Manchester, Manchester, UK.
School of Nursing, Midwifery and Social Work, University of Manchester, Manchester, UK.
Health Soc Care Community. 2016 Mar;24(2):203-13. doi: 10.1111/hsc.12207. Epub 2015 Feb 23.
Informal carers make a significant contribution to illness management in communities, but many struggle to access support and remain 'hidden carers'. We aimed to explore how carers of people with common long-term conditions (LTCs, such as coronary heart disease or kidney disease) conceptualised their caring, and whether they struggled to identify themselves with the term 'carer' or access for support. We conducted semi-structured interviews with 19 informal carers of people with LTCs recruited from local support groups. Topic guides were designed to encourage participants to provide their retrospective accounts of identifying as a carer or struggling to do so. Data were analysed using the constant comparative method. The study was designed collaboratively with a patient and public involvement (PPI) partner, and we consulted with a PPI steering group of people with lived experience of caring during the study. Results showed how participants drew on comparisons with those caring for more dependent relatives in explaining their reluctance to define themselves as a carer, and resisted adopting the label due to concerns that it would threaten the identity of the cared-for person. The data were interpreted in terms of types of 'work' undertaken to manage LTCs, and revealed that carers of patients with LTCs appear to primarily engage in biographical and emotional support, which may be more difficult to conceptualise as legitimate caring 'work'. Participants indicated that health professionals may be in a unique position to validate their role as carers and encourage support seeking. The study suggests how the greater focus on self-management of LTCs in the community must be complemented by recognition of this group as potentially 'hidden carers', who support the patient to minimise the impact the illness has on their lives and consequently may minimise their own caring role, with negative implications for support seeking.
非正式护理人员对社区疾病管理做出了重大贡献,但许多人难以获得支持,仍然是“隐形护理人员”。我们旨在探讨患有常见慢性病(如冠心病或肾病)患者的护理人员如何理解他们的护理工作,以及他们是否难以认同“护理人员”这一称谓或难以获得支持。我们对从当地支持小组招募的19名患有慢性病患者的非正式护理人员进行了半结构化访谈。主题指南旨在鼓励参与者回顾他们作为护理人员的经历或为此所面临的困难。使用持续比较法对数据进行了分析。该研究是与患者及公众参与(PPI)合作伙伴合作设计的,并且在研究期间我们咨询了一个有护理亲身经历的PPI指导小组。结果表明,参与者在解释他们不愿将自己定义为护理人员时,会与那些照顾更依赖他人的亲属的人进行比较,并且由于担心这会威胁到被照顾者的身份而抵制采用这个标签。根据为管理慢性病所开展的“工作”类型对数据进行了解释,结果显示慢性病患者的护理人员似乎主要提供传记式和情感支持,而这可能更难被视为合法的护理“工作”。参与者表示,健康专业人员可能处于独特的地位来认可他们作为护理人员的角色并鼓励他们寻求支持。该研究表明,社区中对慢性病自我管理的更多关注必须辅之以认识到这一群体可能是“隐形护理人员”,他们支持患者将疾病对其生活的影响降至最低,从而可能最小化自己的护理角色,这对寻求支持会产生负面影响。
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