Background: Students living with a chronically ill family member may experience significant pressure, stress, and depression due to their caregiving situation. This may also lead to them delaying or dropping out of school when the combination of being a caregiver and their education program are too demanding. This survey study aims to explore the consequences for students of bachelor or vocational education programs when they are growing up with a chronically ill family member and the influence of various background characteristics and risk factors. Methods: A survey was sent to 5997 students (aged 16–25 years) enrolled in bachelor or vocational education programs in the north of the Netherlands. The content of the survey was based on a literature study and consultation with experts. Descriptive statistics, Chi-square tests, and logistic regression analyses were performed. Results: A total of 1237 students (21%) responded to the survey. A sub group of 237 (19%) students (mean age 21(2.2); 87% female) identified themselves as growing up with a chronically ill family member. More than half (54.9%) of these students indicated that they experienced negative consequences in daily life. A significant association (OR .42, p < .02) was found for these consequences and the level of education for which attending vocational education yields a higher risk. In addition, growing up with a mentally ill family member was associated with a 2.74 (p = .04) greater risk of experiencing negative consequences in daily life compared to students living with a family member with a physical disorder or multiple disorders. Conclusion: Since a substantial number of students growing up with a chronically ill family member indicate serious physical, mental, and social consequences as a result of this care situation, awareness for this specific age-group is needed. Students with a mentally ill family member and students undertaking vocational education appear to be especially at risk. Further research is required in order to gain insight that is more in-depth into the exact type of problems that these students encounter and the specific needs that they have regarding support.

This scoping review provides an overview of the impact of growing up with a chronically ill family member on young adults (18–25 years old), and their specific needs. Young adults represent an important life stage involving a transition to adulthood, during which individuals’ family situations can affect their future. We searched relevant studies following the guideline of Arskey and O’Mailley’s methodological framework and the PRISMA statement guidelines for scoping reviews in PubMed, PsychInfo and reference lists to identify articles for inclusion. Studies from 2005 to 2020 were included in this review. Of the 12 studies, six qualitative studies, five quantitative studies and one mixed method study were included. Eight studies discussed the impact, including consequences at a physical and mental level, at their personal development and future perspectives, but also positive effects, such as being capable of organizing their lives. Four studies discussed the needs of young adult carers, including emotional needs, support needs with regard to stimulating autonomy (arising from internal conflicts) and developing their own identity, and the concerned attitude of involved professionals. An unambiguous definition of the target group and further well-designed research are needed to improve clarity about the role of support, so that future professionals can adequately address the needs and wishes of young adults who grow up with an ill family member.

Background: Healthcare professionals in the hospital setting frequently assume primary caregiving responsibilities, which often leads family members to perceive this as standard practice during hospitalization. This dynamic may create a gap between actual and desired levels of family involvement. The aim of this study is to explore the opinions of families about their involvement in care during the hospitalization of a relative. Methods: A sequential explanatory mixed-method study design was used, where quantitative data collection is followed by qualitative data collection for a deeper understanding of the quantitative findings. Data were collected between November 2023 and April 2024 across 15 wards in a university hospital in the north of the Netherlands. 153 family members of hospitalized patients completed the adapted Families’ Importance in Nursing Care–Families’ Opinions questionnaire, providing valuable quantitative data. Twenty-three of these family members were subsequently interviewed to gather qualitative insights. Data were analyzed sequentially, with the quantitative results guiding qualitative data collection. The two types of data were integrated to draw comprehensive conclusions about the significance of family involvement during hospitalization. The study adhered to the guidelines of the Good Reporting of A Mixed Method Study (GRAMMS). Results: The questionnaire scores indicate a high willingness for involvement in care during hospitalization. Subsequent in-depth interviews led to the development of a model demonstrating that this involvement is sequentially related to the themes of acknowledgement, alignment, and collaboration. Conclusions: Family members expressed a need to be acknowledged by healthcare professionals as partners in care. Role agreements and information sharing during hospital care should be aligned to achieve effective collaboration between family members and healthcare professionals.

There is a lack of service provision for young adult caregivers (18–25 years of age). This study aims to describe the expectations and prospects of young adult caregivers regarding support from health and education professionals. A qualitative focus group design was used. Twenty-five young Dutch adults (aged 18–25 years) who were growing up with a chronically ill family member participated in one of seven focus groups. Qualitative inductive analysis was used to identify codes and main themes. Two overarching themes with five sub-themes emerged from the focus group discussions. The overarching themes are: the ‘process of approaching young adults’ and the ‘types of support these young adults require’. The process of approaching young adults contains the sub-themes: ‘recognition, attention, and listening’, ‘open-minded attitude’, ‘reliability’, and ‘respecting autonomy’. The types of support this group requires contains the sub-themes: ‘information and emotional support’. Health and education professionals should first and foremost be aware and listen to young adult caregivers, pay attention to them, have an open-minded attitude, respect their autonomy, and have the knowledge to provide them with information and emotional support. Further research could yield comprehensive insights into how professionals can meet these requirements and whether these results apply to male young adult caregivers and young adult caregivers not enrolled in a healthcare-related study program.

Young adult caregivers experience reduced wellbeing when the combination of family care and an educational program becomes too demanding. We aim to clarify the role views, competences, and needs of lecturers regarding the identification and support of these students to prevent negative mental health consequences. A mixed-methods explanatory sequential design was used. We collected quantitative data using a survey of lecturers teaching in bachelor education programs in the Netherlands (n = 208) and then conducted in-depth interviews (n = 13). Descriptive statistics and deductive thematic analyses were performed. Most participants (70.2%) thought that supporting young adult caregivers was the responsibility of the educational institution, and 49% agreed that it was a responsibility of the lecturer, but only 66.8% indicated that they feel competent to do so. However, 45.2% indicated that they needed more training and expertise to identify and support these students. All interviewees felt responsible for their students’ wellbeing but highlighted a lack of clarity regarding their role fulfillment. In practice, their ability to identify and support these students depended on their available time and level of expertise. The lecturers required agreements on responsibility and procedures for further referral, as well as information on support and referral opportunities, communication skills courses, and peer-to-peer coaching.