Children and adolescents with caring responsibilities are an uncontested reality in our society. Most are hidden from public view, and they perform a broad range of caring activities for chronically ill or disabled family members. The research literature has accumulated a comprehensive body of knowledge about young carers' personal needs. However, knowledge and understanding are limited regarding the needs of young carers' families. This knowledge can contribute to preventing children and adolescents from assuming inappropriate caring roles. A qualitative research approach was used to investigate the needs of young carers' families in terms of managing daily caring demands. Nine family interviews were conducted with 34 individuals including 15 young carers during spring/summer 2015 in eastern Austria. Open and axial coding procedures and constant comparison method were used to analyse the data. The findings revealed that young carers' families need to live in accordance with their inherent family logic. Family logic is generated and maintained via (i) family reciprocity that involves the natural help within the family, (ii) individual developmental space that allows family members to be perceived and act as individuals and (iii) network cooperation that offers formal and informal support and recognition from society in general. The findings contribute to understanding how families with caring children manage the caring demands of their everyday lives. The findings also indicate that formal support for families with young carers should consider the individuality of caring arrangements with respect to the holistic and personal needs and avoid stigmatising families that integrate children into caring.
Aims
To evaluate why no families could be recruited for a nurse‐led and family‐centred support programme in Austria which aimed to prevent an age‐inappropriate caring role for young carers.
Design
A qualitative study incorporating qualitative e‐interviews and telephone interviews.
Method
Twenty‐one interviews were conducted with statistically significant project stakeholders (N = 17) and with adult family members of children with caring responsibilities (N = 4). Data collection and analysis were guided by the “Social Marketing Framework.” Relevant statements were assigned to the main categories: product; price; promotion; place; and working with partners.
Results
The lack of awareness towards young carers, the unfamiliar, open outcome approach of the intervention, the inappropriate language used in promotional materials and the families' fear of stigma while seeking support were identified as central obstacles for successful recruitment of families and implementation of the support programme.
Background
People with cancer have high information needs; however, they are often inadequately met. Patient versions of clinical practice guidelines (PVGs), a special form of evidence-based information, translate patient-relevant recommendations from clinical practice guidelines into lay language. To date, little is known about the experience of PVGs from healthcare providers’ perspective in healthcare.
Methods
Twenty semi-structured telephone interviews were conducted with oncological healthcare providers in Germany between October and December 2021. Interviews were recorded and transcribed verbatim. Mayring’s qualitative content analysis with MAXQDA software was utilised to analyse the data.
Results
A total of 20 healthcare providers (14 female, 6 male), mainly working as psychotherapists/psycho-oncologists and physicians, participated. Most participants (75%) were aware of the existence of PVGs. The content was predominantly perceived as comprehensible and relevant, whereas opinions on the design and format were mixed. The perceived lack of up-to-date information limited participants' trust in the content. Most felt that PVGs positively impact healthcare owing to the fact that they improve patients’ knowledge about their disease. Additionally, PVGs served as a guide and helped healthcare providers structure physician–patient talks. Healthcare provider’s unawareness of the existence of PVGs was cited as an obstructive factor to its dissemination to patients.
Conclusion
Limited knowledge of the existence of PVGs among healthcare providers, coupled with alternative patient information, hinders the use and dissemination of PVGs in healthcare. However, the applicability of PVGs seemed to be acceptable owing to their content and good comprehensibility, especially with respect to physician–patient communication.
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