Session Information
04 SES 05.5 A, General Poster Session
General Poster Session
Contribution
Families caring for their children with special needs require appropriate skills, competences, and knowledge to provide adequate care [11]. These caregiving families often face economic, health, and social challenges and frequently do not receive enough political and structural support. Especially in the early stages of caregiving, family carers particularly face a lack of experience and routines. This contributes to increased stress levels [8]. Typically, it is expected that essential knowledge is imparted to family carers by professional experts [12]. However, while there are numerous social services focused on the care of the elderly, offerings for those providing care to children with special needs at home are insufficient [11]. Furthermore, families who have been in caregiving for several years tend to accumulate substantial practical experiential knowledge. Approaches like the empowered family model acknowledge the expertise of family carers [12]. This expertise remains mostly unrecorded, inaccessible or even tacit. Some of the knowledge is passed on to other caring families through self-help groups, online forums, social media and other personal contacts within the peer group [2]. Within these groups or loose networks, informal educational processes take place , which can be understood through the concept of communities of practice [6, 7]. However, the experiential knowledge of family carers is not easily accessible, not structured, and the information is often volatile.
To address these challenges, the "Pflegeschätze" project aims to identify experiential knowledge of caring families, describe it in a comprehensible way and make it available to other families in a structured and systematized way. In this context, the heterogeneity of the target group must be taken into account when presenting the care treasures. An online platform is designed to share this experiential knowledge and thus support informal educational processes of family carers. The focus is on the creative everyday practices that family carers have developed through their experiential knowledge, referred to as "Pflegeschätze" or in English care treasures. Care treasures are innovative or creative practices, processes and artefacts that help self-organized caregivers to cope with and shape challenges in their everyday family life as well as in non-everyday situations (e.g. hospital stays or vacations). They are developed based on the (experiential) knowledge of the family carers alone or in exchange with other people in care communities. How this valuable knowledge and creative practices can be identified, documented, systematized and shared with other families and professionals is not yet researched. In addition to identifying specific care treasures, the project aims to provide the means to discover and share this type of knowledge.
This may support a democratization of knowledge which consists of making information accessible to as many families as possible. At the same time, the circle of those involved in the production of knowledge is widened, in that not only traditional experts create and disseminate knowledge, but also people from different backgrounds contribute to the generation and dissemination of knowledge and are empowered to contribute their perspectives. The aim is to support families, who bear the main responsibility for care in many countries, includingGermany [11], to fulfill ongoing requirements in the long term and enhance their quality of life.
Method
The research and development project "Pflegeschätze" is a transdisciplinary initiative involving partners from academia, self-help, and business. To identify and describe the care treasures, a qualitative study is conducted. Data is collected using various methods: semi-structured interviews [5], co-creative workshops [3], and the messenger-impulse-method. The messenger-impulse method was newly developed within the project and is based on photovoice [13], diary method [10], and elements of solution-focused counseling [1]. This method uses mobile instant messaging services to identify care treasures. The aim is to keep the burden of data collection on family carers as low as possible by allowing them to participate at any time and from any location. In addition, the use of translation tools means that people who do not speak German (very well) can also be reached, supporting participation across language barriers. The collected data are analyzed using qualitative content analysis methods [9] in order to identify the care treasures and to develop a scientifically grounded categorization system for the systematic structure of the online platform. The identified care treasures are described in plain language and accompanied by clear illustrations to ensure accessibility and understandability for a diverse audience on the platform. The insights regarding description and visualization of caregiving treasures are documented in a presentation guide. Family carers, who participate in the project through a citizen advisory board, are involved in the process.
Expected Outcomes
The findings of the qualitative study contain many different practical examples illustrating the experiential knowledge of family carers as they navigate daily care responsibilities alongside family life. Examples of identified care treasures include freezing portions of pureed food for tube feeding, using knee pads when bathing a child in need of care, and strategies for organizing necessary medical care for the child on holiday. It can be concluded that family carers possess substantial experiential knowledge across various domains, which is valuable to share with families new to caregiving. Interestingly, most family carers were unaware of the extent and value of their knowledge. Additionally, it became apparent that participants continued to refine their practices throughout the data collection process. These findings suggest that the data collection process itself, by recognizing and making the expertise of family carers visible, provides opportunities for empowerment, informal educational processes and encourages the co-creative development of knowledge. In contrast to exchange in self-help associations or through social media, the design of the digital content will not be volatile but solution-oriented and searchable in a structured manner. The most important requirements for the presentation include the use of concise, comprehensible descriptions and images to enable a quick understanding of the content without requiring a high level of text comprehension, as well as the design for family carers as an extremely diverse target group across different cultural contexts. In the face of societal uncertainties, flexibilization, and rapid technological change, informal educational processes gain importance[4]. However, technological progress also offers many opportunities for sharing knowledge and experience regardless of time and place [7]. The results of the "Pflegeschätze" project extend beyond Germany to have significance across Europe and globally, providing valuable insights not only for caregiving families but also for non-formal educational processes in various contexts.
References
[1]Bamberger, G. (2001): Lösungsorientierte Beratung. Weinheim Beltz. [2]Friedman, E., Trail, T., Vaughan, C., Tanielian, T. (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. [3]Hackett, C., Mulvale, G., Miatello, A. (2018): Co-designing for quality: Creating a user-driven tool to improve quality in youth mental health services. Health Expectations: An International Journal of Public Participation in Health Care and Health Policy 21, 6, 1013–1023. [4]Harring, M., Witte, M., Burger, T. (2016): Informelles Lernen – Eine Einführung. In Handbuch informelles Lernen, Harring, M., Witte, M. ,Burger, T.(Hrsg.). Beltz Juventa, Weinheim, Basel, 11–24. [5]Helfferich, C. (2014): Leitfaden- und Experteninterviews. In Handbuch Methoden der empirischen Sozialforschung, Baur, N. ,Blasius, J.(Hrsg.). Springer VS, Wiesbaden, 559–574. [6]Jütte, W. (2016): Netzwerke und informelles Lernen. In Handbuch informelles Lernen, Harring, M., Witte, M. ,Burger, T.(Hrsg.). Beltz Juventa, Weinheim, Basel, 561–575. [7]Kimmerle, J., Moskaliuk, J., Oeberst, A., Cress, U. (2015): Learning and Collective Knowledge Construction with Social Media: A Process-Oriented Perspective. Educational Psychologist 50, 2, 120–137. [8]Koch, A., Kozhumam, A., Seeler, E., Docherty, S., 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. [9]Kuckartz, U.,Rädiker, S. (2022): Qualitative Inhaltsanalyse. Methoden, Praxis, Computerunterstützung. Beltz Juventa, Weinheim, Basel. [10]Kunz, A. (2018): Einführung in Diary-Verfahren. Beltz Juventa, Weinheim. [11]Oetting-Roß, C. (2022): Pflegerische Versorgungssituation (schwerst-)pflegebedürftiger Kinder. In Pflege-Report 2022, Jacobs, K., Kuhlmey, A., Greß, S., Klauber, J. ,Schwinger, A.(Hrsg.). Springer Open, Heidelberg, 3–15. [12]Theunissen, G. (2022): Empowerment. Lambertus, Freiburg im Breisgau. [13]Wang, C. ,Burris, M. (1997): Photovoice: Concept, Methodology, and Use for Participatory Needs Assessment. Health education & behavior: the official publication of the Society for Public Health Education 24, 3, 369–387. [14]Wysocki, T., Pierce, J., Caldwell, C., Aroian, K., Miller, L., Farless, R., Hafezzadeh, I., McAninch, T., Lee, J. (2018): A Web-Based Coping Intervention by and for Parents of Very Young Children with Type 1 Diabetes: User-Centered Design. JMIR diabetes 3, 4, e16.
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