Empowering Family Carers: Discovering and Sharing Creative Ideas to Navigate Daily Life

Abstract

Purpose The majority of individuals requiring care in Germany are looked after by family members (Statistisches Bundesamt [Destatis], 2022). Especially, at the beginning of the caregiving period, family caregivers experiences a lack of experience and routines, which leads to stress (Koch et al., 2021). However, long-term carers have often developed creative practices or self-made products to manage not only the challenging caregiving tasks but also to navigate daily life, employment, family life and social participation to enhance their quality of life. These creative ideas have not yet been systematically documented nor made accessible. It could be assumed that these grassroots ideas and products could enhance nursing families’ lives (Duncan et al 2019) as many use online support communities (Friedman et al 2018) and rely on peer support (Lancaster 2023), mostly for emotional relief (Chi & Demiris 2015). Structured peer know how was not mentioned in reviews we researched: How can digital technological networks support the creation of know how on quality of life for all those involved, so that families who take on the main burden of care in Germany can meet the requirements in the long term? How can creative ideas for a better management of everyday life be identified, presented and shared through a digital platform? Method An interactive digital platform “Pflegeschaetze” will document such practices. The design and accessibility of the platform and the information to be displayed need thorough planning: Through a qualitative study the creative ideas of family carers are surveyed through semi-structured interviews, elements of diary and photovoice methods, as well as solution-focused and co-creative design thinking workshops. Solutions identified are described and visualized to be presented on an “exhibition” on an interactive platform with regard to accessibility and plain language and visualization. Based on the collected ideas, a scientifically grounded categorization system for structuring and finding the creative ideas on the platform is developed. Results and Discussion Often carers are not even aware of how much knowledge they have, which is why the data collection process itself has the potential to empower research participants. Even new ideas are generated during the identification process. With regard to work, leisure and social participation, creative ideas were identified in categories such as: time management; communication; DIY; self-care. Examples of identified creative ideas include the use of (digital) collaborative charts for communication; strategies for organizing necessary care aids at vacation destinations; cork panelling to protect walls when using a wheelchair. In contrast to exchange in self-help associations or exchanges through social media, the design of the digital content will not be volatile but solution-oriented and searchable in a structured manner. Key requirements for presenting these on the digital platform include the use of concise, understandable descriptions and images/videos to enable the quick comprehension of content without demanding high levels of reading, language and text comprehension (unlike online forums) or knowledge of medical terms and designing for family carers as a highly diverse target group.

References

Chi, N.-C, Demiris, G. (2015). A systematic review of telehealth tools and interventions to support family caregivers. Journal of Telemedicine and Telecare, 21: 37–44.

Duncan, T. S., S. Riggare, S. Koch, L. Sharp and M. Hägglund (2019) ‘From Information Seekers to Innovators: Qualitative Analysis Describing Experiences of the Second Generation of E-Patients’. Journal of Medical Internet Research, 21(8): e13022. DOI: 10.2196/13022.

Friedman, E. M., T. E. Trail, C. A. Vaughan and T. Tanielian (2018) ‘Online peer support groups for family caregivers: are they reaching the caregivers with the greatest needs?’, Journal of the American Medical Informatics Association, JAMIA, 25(9): 1130–1136. DOI: 10.1093/jamia/ocy086.

Koch, A., Kozhumam, A. S., Seeler, E., Docherty, S. L., & Brandon, D. (2021). Multiple Roles of Parental Caregivers of Children with Complex Life-Threatening Conditions: A Qualitative Descriptive Analysis. Journal of Pediatric Nursing, 61, 67–74. https://doi.org/10.1016/j.pedn.2021.03.017

Statistisches Bundesamt. (2022). 5 Millionen Pflegebedürftige zum Jahresende 2021. https://www.destatis.de/DE/Presse/Pressemitteilungen/2022/12/PD22_554_224.html

Lancaster, K., A. Bhopti, M. L. Kern, R. Taylor, A. Janson, and K. Harding (2023) ‘Effectiveness of peer support programmes for improving well-being and quality of life in parents/carers of children with disability or chronic illness: A systematic review’, Child: Care, Health and Development, 49(3): 485–496. DOI: 10.1111/cch.13063.