Study protocol: young carers and young adult carers in Switzerland

Abstract

BackgroundIn Switzerland, the issue of young carers and young adult carers - young people under the age of 18 and 24 respectively, who take on significant or substantial caring tasks and levels of responsibility that would usually be associated with an adult - has not been researched before. The number of these younger carers is unknown, as is the extent and kind of their caring activities and the outcomes for their health, well-being, psycho-social development, education, transitions to adulthood, future employability and economic participation.MethodsThe project is comprised of three stages:A national Swiss-wide online survey to examine awareness of the issue of younger carers amongst professional populations in the education, health and social services sectors;An online survey of 4800 Swiss pupils in schools using standardised instruments to identify the proportion and characteristics of pupils who are carers; andSemi-structured interviews with 20 families comprising family members with care needs and younger carers, to consolidate and validate the other stages of the study; and to hear directly from care-dependent family members and younger carers about their experiences of the issues identified in the surveys and in previous published research.DiscussionThe needs of younger carers and their ill and disabled family members in Switzerland have not been systematically investigated. This will be the first study in the country to investigate these issues and to develop evidence-based recommendations for policy and practice, drawing also on international research.The present study therefore fills an important national and international research gap. It will collect important data on the awareness, extent, kind and impact of caring amongst children and young people in Switzerland, and cross-link these findings with robust evidence from other countries. The study will reveal (a) the extent of awareness of the issue of young carers amongst medical, social, health, educational, and other groups in Switzerland; (b) the proportion and number of young carers amongst a normative child population, and what these young carers ‘do’ in terms of their caring roles; and (c) direct accounts by families of their care-giving and receiving experiences.

Students growing up with a chronically ill family member; a survey on experienced consequences, background characteristics, and risk factors

“…Policymakers and NGO's within the UK and Australia have substantially increased their national awareness and response to the needs of these children, though awareness is only recently emerging in other countries such as the Netherlands [5]. Previous research that was mostly conducted with young children and adolescents (age 8-16) indicated that experiencing negative consequences of growing up with a chronically ill family member generally depends on characteristics that are related to individual traits of the child but also on factors such as which family member is ill [2,3], the type of illness of this family member [6][7][8], and the type of tasks that must be performed [9][10][11][12]. Earlier studies indicate that it matters which family member is ill. Barkmann et al [13] described the influence of a physically ill parent on children and adolescents between eight and 18 years.…”

“…Also, the number of tasks could result in more stress and burden, however, most of this stress appears to be related to emotional situations such as watching their chronically ill family member crying, feeling stress from the other family members, and being aware of the dependency of the ill person [16,23]. In conclusion, it can be stated that most studies on the consequences of growing up with a chronically ill family member are being performed among young children and adolescents; there is minimal research among students in the specific age group between 16 and 25 years old [9,22]. This is inadequate since these young adults are in a critical developmental stage in which they must determine the balance between their caregiving role while simultaneously struggling with identity formation and specific developmental tasks [21,24].…”

Difficulties and Needs of Adolescent Young Caregivers of Grandparents in Italy and Slovenia: A Concurrent Mixed-Methods Study

“…The non-standardized questions on health and choice options were identified based on the previous research studies on (A)YCs [ 1 , 2 , 3 , 4 , 5 , 6 , 7 , 8 , 9 , 10 , 11 , 12 , 13 , 14 , 15 , 16 , 17 , 18 , 19 , 20 , 21 , 22 ].…”

“…Nevertheless, these are rough estimates of the prevalence of (A)YCs in the whole young population, because every national study adopted a different definition of caring and (A)YC, and a different methodology to identify and count them (e.g., the age range) [ 4 ]. However, results collected at the national level seem to suggest that caring for a sick or disabled family member during adolescence and youth is quite a common phenomenon [ 5 ]. Focusing on the two countries that are analysed in this study, while no estimate of the number of AYCs in Slovenia is available so far, in Italy 7% of the population between the ages of 15 and 24 are estimated to take care of frail adults or older people, i.e., grandparents (GrPs) [ 6 ].…”

“…Positive outcomes include soft skills such as maturity [ 10 ], resilience in the face of difficulties [ 11 ], empathy [ 12 ], and a better self-efficacy [ 13 ]. Conversely, negative outcomes include frustration and stress, mental health problems [ 14 ], and poor-well-being [ 15 , 16 ], in addition to the risk of experiencing inequalities in accessing health services [ 4 , 5 , 6 , 7 , 8 , 9 , 10 , 11 , 12 , 13 , 14 , 15 , 16 , 17 ], and of having fewer education and employment opportunities in the long-term [ 18 , 19 , 20 ]. AYCs often face numerous challenges at school, such as tardiness and/or absenteeism, and difficulties in completing or carrying out homework and meeting deadlines [ 21 ].…”