The present study contributes to the limited research evidence on young adult carers (YACs) aged 18 to 25 years. A national population study of young adults in higher education (N = 40,203, 18–25 years) was examined, comparing students with and without informal care responsibility due to physical or mental illness, substance abuse, or disabilities in family members, relatives, or others. YACs reported poorer study progress compared to students without care responsibilities. Regarding recreational activities, caring responsibility differed depending on number of hours of caring on weekdays. Whereas YACs who provided 1 h or less of daily care were more likely to participate in voluntary student activities, those with 2 h or more of daily caring reported less involvement in such activities. YACs also reported less physical exercise, somewhat lower number of close friends, and more loneliness compared to students without care responsibilities. A dose response pattern was found, with number of hours providing care being associated with poorer study progress and more loneliness.
Study progress
Findings of YACs having more delayed study progress (i.e., number of failed exams and changes in study program) correspond to negative educational consequences of caring (e.g., high degree of lateness and absence from school) reported in previous studies on YACs [6, 11, 35]. In line with Becker and Sempik [11], we found a dose–response pattern between caring and education, with greater caring responsibilities associated with more negative consequences. However, based on our findings we cannot account for the mechanisms in which informal caring influence education. Hours spent on studies per week was no different between non-carers and carers reporting 1 h or less of care per day on weekdays. This indicates that YACs with less care responsibility prioritized studies as much as their non-caring counterparts measured by hours spend studying. However, delayed study progression and failed exams among YACs with 2 h or more of caring per day may indicate conflicting demands between studies and caring. Thus, combination of lack of time and energy and the need to balance between care responsibilities and educational priorities are possible explanations for the association between caring responsibilities and poorer study progress, particularly for YACs who provide caring for several hours per day.
Poorer study progress among YACs with extensive care responsibility may also be the result of emotional challenges related to caring responsibility. Successful study progress necessitates continued focus and dedicated attention. Some YACs may be less concentrated on their studies, an assumption supported by a study by Blake-Holmes [35] who interviewed 20 carers (19–54 years) and found that their ability to engage with education was affected by tiredness, distraction, and worry about what was happening with the care-recipient at home. Similar findings have been reported by Stamatopoulos [10], describing sleep deprivation and worrying for the care-receiver as reasons for missing tests and assignment deadlines, as well as absenteeism and difficulties staying focused in class among young carers in secondary school. Hamilton and Adamson [18] found that caring responsibilities did not affect ambitions among YACs to go to university. Nevertheless, YACs choose courses and institutions based on what was possible or practical to combine within their caring responsibilities. Thus, caring responsibilities seemed to have priority, and perhaps also contribute to poorer study progress.
Recreational activities
Compared to students without care responsibilities, YACs in the present study were more likely to participate in organized volunteer student activities (e.g., cultural activities, student democracy, and other interests societies). This may be explained by a previous study describing YACs to be involved in recreational activities if these activities were easily available on campus [6]. In our study increased recreational activities were reported only by YACs with 1 h or less of daily care responsibility, whereas YACs with more extensive care responsibility reported lesser involvement in leisure activities. This is in line with findings from a previous study where 66% of young carers (12–21 years) reported being unable to participate in activities outside of school hours because they were needed at home.
YACs reported being less physically active than students without care responsibilities. According to a systematic review on physical activity in informal carers, across age groups, informal carers place their own health needs as secondary to the health of the care-recipient [36]. Even though the number of studies examining physical activities among informal carers is very scarce, it was concluded that the level of physical activity among informal carers is below what they themselves desire, below governmental guidelines and below what is commonly found in the general population. Furthermore, health issues often found among informal carers, such as bodily pain, anxiety and insomnia [15], are suggested as possible barriers towards physical activities in informal carers. Physical activity has been examined as a potential protective strategy against emotional exhaustion and burnout in carers, with results indicating that activities such as walking, meditation, climbing and yoga etc. may decrease distress, improve self-efficacy and sleep quality, and increase well-being within a wide age-range of informal caregivers [37]. Further studies are warranted examining how and to what degree interventions involving physical activity may affect the psychosocial and physical well-being of YACs.
Loneliness and number of close friends
YACs in the current study reported more loneliness compared to their peers. Also, they reported having slightly fewer friends with whom they felt close to or could talk to. Feelings of being left out and isolated were more pronounced among YACs with more extensive care responsibility (2 h or more per day). According to Vasileiou, et al. [20] loneliness and social isolation is common among informal carers, probably due to restrictions in the caregiver situation, with carers having limited time and opportunity to build and maintain social relationships. However, loneliness may also be a result of powerlessness, helplessness, and feelings of overwhelming responsibility among carers [20]. Young carers report that they feel different from others and that others are not fully able to understand their situation or the challenges they are confronting [24]. Feelings of being more mature and different from their peers may limit YACs’ in establishing close friendships. Furthermore, fear of stigmatization and experiences of being bullied because of an ill or disabled family member, relative or friend have also been suggested to contribute to loneliness in young carers [10, 11]. As higher levels of social support has been related to positive outcomes among carers between 10 to 25 years [21], improving social support for YACs would probably reduce feelings of loneliness and increase positive health outcomes.
Strengths and limitations
The present study comprise a large sample of YACs recruited from a national population study on students in higher education. The sample allows us to compare outcomes between young adults with and without care responsibilities. A strength of the present study is the use of psychometrically sound outcome measures. Furthermore, the study focuses on a group of young adults where little previous research has been published [1, 4, 5].
The YACs in the present study were identified by self-report. Because young carers are considered to be “a hidden group”, often not identified by professionals in health care, education, or social services [38], self-report measures are considered the best available strategy to identify this group of cares. Furthermore, the survey questions applied to identify YACs is considered to be reliable and has previously been evaluated as suitable to identify young carers [8].
However, limitations of the study include definition of YACs not provided for responders of the survey. This may have resulted in some YACs not being identified. On the other hand, as the concept of young carers or young adult carers are not commonly used in Norway, a definition could have resulted in responders with care responsibility not identifying themselves with this label. Furthermore, despite the large sample, the results should be interpreted in accordance with the relatively modest response rate for the survey (31%). Also, worth noticing is the fact that we have limited information about the students who did not participate in the survey.
YACs may experience barrier against entering higher education [6, 39]. Thus, an important selection bias is the exclusion of young adults who are not in higher education, but rather in training, employment, or receiving welfare benefits. Thus, the present findings are limited to YACs in higher education. As females constitute about 70% of the student population in Norwegian colleges/universities, the sex difference in our sample should not represent a substantial bias.
Study progress is probably related to cognitive abilities, and this could be considered a relevant confounder. However, most students have proved their academic skills to get into university. Furthermore, as reliable measures on IQ require resources that are hard to include in a large population study like the present, cognitive abilities were not controlled for in the analyses. Also, we find it unlikely that cognitive abilities or IQ are associated with young adults providing informal care, making it less relevant to include IQ as a confounding variable.
The present study did not test potential relationships across study progress, recreational activities, and loneliness, and possible pathways between the caring situation and functional impact. Hopefully future studies will include longitudinal designs where more complex models for prediction of outcomes in YACs may be evaluated.
Limitations regarding the measures used in this study needs to be commented. Ideally all three outcomes (study progress, recreational activities, and loneliness) should have been assessed more extensively, including a broader specter of variables within each domain. For example, whereas social relations were assessed by self-reported loneliness and number of close friends, well-known scales measuring social support and/or social network could have been applied. As large surveys like the present have limited space for extensive measures, we anticipate future studies that may replicate, dispute, or nuance the present findings.
As this was a cross-sectional study, we cannot determine the temporal order and causality between caring responsibilities and outcomes. However, caregiving most likely affects study progress, recreational activities, and social relations, rather than the other way around. Other limitations in the study include the lack of information about aspects of the caregiving, such as the type of care provided (e.g., emotional care, personal care), type of illness/disability in the care-recipient (e.g., mental health problems), the relationship to the care recipient (e.g., parent, sibling, friend), duration of the illness/disability, or duration of the caregiving. This is information needed to be included in future studies to further nuance our understanding of the consequences of informal caregiving for young adults.
Implications
Young adulthood is a period characterized by increased independence, development of voluntary relationships, and decisions regarding education and career. Disruptions of these tasks can have long-term adverse effects. In some countries (e.g., UK, Australia) interest organizations for young carers below 18 years have been established, providing information, advice, support, social relations, practical skills, and referrals to specialist organizations, whereas other countries (e.g., Norway) have limited attention towards the needs of young carers, either above or below 18 years. Thus, increased attention and support for young people with care responsibilities is warranted within the health and educational systems. As the need of YACs to prioritize multiple demands and the lack of time to pursuit own interests may also be a barrier against receiving help and support, web-based interventions (e.g., for psychoeducation, social networking) have been suggested to make support more available [10]. Furthermore, as activities available on campus may be easier to attend for some YACs, psychosocial interventions, and/or physical activity directed at YACs could be offered as student activities. Counsellors and employees within the higher education system should be sensitized towards the needs of YACs. This could make it easier to recognize YACs and to help them balancing their caring responsibility and education (e.g., offer flexibility regarding exams, attendance, and study progress). When necessary, referral should be made to specialized services for the young carer him/herself and for the care-receiver (e.g., home-based care services, psychotherapy, physiotherapy). Finally, heightened public awareness and social appreciation of the contributions made by young adult caregivers may diminishing their sense of loneliness and isolation.