Wallcook Sarah, Dahlkvist Ulla, Domeij Yvonne, Green Kerstin, Isaksson Gigi, Goliath Ida
Department of Neurobiology, Care Sciences and Society, Karolinska Institutet, Stockholm, Sweden.
Stockholm Gerontology Research Centre, Stockholm, Sweden.
Health Expect. 2025 Feb;28(1):e70171. doi: 10.1111/hex.70171.
Prevention of health deterioration is a key policy objective in Sweden informed by active and healthy ageing initiatives. However, the perspectives of older people with mobility and health limitations on current prevention initiatives are seldom gained meaning these initiatives may fail to align to with the priorities of people whose health has ostensibly already deteriorated. We aimed to explore older care-experienced people's perspectives on the topic of health deterioration prevention and highlight aspects that they think are important to prioritise.
Eight older people with experience in giving or receiving formal or informal care were involved as lay co-researchers in a participatory action research project that involved recruiting 11 further older informants to participate in peer interviews or complete a logbook. In a series of 13, 2-h workshops held over 1 year, we undertook data generation, training, reflection and analytic activities inspired by framework analysis.
The lay co-researchers found the topic of health deterioration to be negatively and narrowly focussed opting instead to pursue a focus on articulating aspects, or puzzle pieces, that influence the improvement of wellbeing. Six influential puzzle pieces (stigma, digitalisation, services, losses, meaning and interactions) were regarded as important to prioritise which together illustrated that wellbeing is continually shaped in an interplay with dominant, but manipulable, social norms.
This study highlights how the language of active and healthy ageing, which pervades policy and practice, is imbued with ageist and ableist subtexts that can influence older people's wellbeing and lead to exclusionary experiences in society. We highlight wider societal trends, particularly digitalisation and effectivisation, whose negative impact on older people's wellbeing could be mitigated through inclusive co-design and resistance to normative influences.
This project was initiated in dialogue with stakeholder representatives from pensioner organisations in a larger scale participatory action research project. The care-experienced lay co-researchers collaborated in all phases of this project-gaining funding, formulating research questions, planning the study design, generating data in peer interviews, analysing and interpreting data, disseminating findings, prioritising future research and co-authoring articles.
在积极健康老龄化倡议的推动下，预防健康恶化是瑞典的一项关键政策目标。然而，行动不便且健康状况不佳的老年人对当前预防举措的看法却很少被了解，这意味着这些举措可能无法与那些健康状况表面上已经恶化的人群的优先事项保持一致。我们旨在探讨有护理经验的老年人对预防健康恶化这一主题的看法，并突出他们认为应优先考虑的重要方面。
八名有提供或接受正式或非正式护理经验的老年人作为外行人共同研究者参与了一个参与式行动研究项目，该项目还招募了另外11名老年受访者参与同伴访谈或填写日志。在为期1年举办的一系列共13次、每次2小时的研讨会上，我们开展了受框架分析启发的数据生成、培训、反思和分析活动。
外行人共同研究者发现，健康恶化这一主题被消极且狭隘地关注，他们转而选择关注阐述影响幸福感提升的各个方面或拼图碎片。六个有影响力的拼图碎片（耻辱感、数字化、服务、损失、意义和互动）被认为是需要优先考虑的重要因素，它们共同表明，幸福感是在与占主导地位但可操控的社会规范的相互作用中不断形成的。
本研究凸显了贯穿政策和实践的积极健康老龄化语言如何带有年龄歧视和能力歧视的潜台词，这些潜台词会影响老年人的幸福感，并导致他们在社会中遭遇被排斥的经历。我们强调了更广泛的社会趋势，特别是数字化和效率化，通过包容性的共同设计和抵制规范性影响，可以减轻这些趋势对老年人幸福感的负面影响。
该项目是在一个更大规模的参与式行动研究项目中与养老金领取者组织的利益相关者代表进行对话后启动的。有护理经验的外行人共同研究者在该项目的各个阶段进行了合作，包括获得资金、制定研究问题、规划研究设计、在同伴访谈中生成数据、分析和解释数据、传播研究结果、确定未来研究的优先事项以及共同撰写文章。
