Undergraduate caregivers for individuals with chronic conditions: Stressors and needs
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Cited by 3 publications
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Perceived life balance among young adult students: a comparison between caregivers and non-caregivers
Background Young adult caregivers (YACs) are individuals aged 18–25 years who provide care to a loved one (parent, sibling) with frailty, disability, or illness. As young adults, the transition period between adolescence and adulthood can be more challenging for YACs than their peers without care responsibilities (non-YACs), as they have to integrate caregiving with other life areas (education, relationships). This study compared the perceived life balance and the psychological functioning (i.e., burnout, negative and positive affect, and life satisfaction) between YACs and non-YACs. Method An online cross-sectional survey was conducted among 74 YACs (85.1% females, 22.0 ± 2.1 years) and 246 non-YACs (76.0% females, 21.8 ± 2.0 years) studying in the Netherlands. The survey assessed demographic characteristics, caregiving characteristics (to be filled out only by the YACs), life balance, and psychological functioning. We used Chi-square tests for categorical variables and independent T-tests for continuous variables to examine possible differences in demographic characteristics between YACs and non-YACs. In addition, we used independent T-tests to compare the perceived life balance and psychological functioning between YACs and non-YACs. Results YACs and non-YACs were similar on all the demographic characteristics, except for living status; fewer YACs (44.6%) than non-YACs (59.3%) lived on their own, with or without other students/friends (χ2 = 16.3, p = 0.01). YACs perceived slightly less balance in life than non-YACs (d = -.29, p = .03). Both groups did not differ in experiencing burnout, affect, and life satisfaction (all p > .05). They experienced high levels of burnout and moderate levels of life satisfaction. Discussion Although YACs perceived a little less balance in life than non-YACs, this was not reflected in their psychological functioning. Healthcare professionals and school counselors may need to recognise the critical phase of all young adults and provide the support that could, for example, help them reduce burnout and enhance their quality of life.
Perceived life balance among young adult students: a comparison between caregivers and non-caregivers
Background Young adult caregivers (YACs) are individuals aged 18–25 years who provide care to a loved one (parent, sibling) with frailty, disability, or illness. As young adults, the transition period between adolescence and adulthood can be more challenging for YACs than their peers without care responsibilities (non-YACs), as they have to integrate caregiving with other life areas (education, relationships). This study compared the perceived life balance and the psychological functioning (i.e., burnout, negative and positive affect, and life satisfaction) between YACs and non-YACs. Method An online cross-sectional survey was conducted among 74 YACs (85.1% females, 22.0 ± 2.1 years) and 246 non-YACs (76.0% females, 21.8 ± 2.0 years) studying in the Netherlands. The survey assessed demographic characteristics, caregiving characteristics (to be filled out only by the YACs), life balance, and psychological functioning. We used Chi-square tests for categorical variables and independent T-tests for continuous variables to examine possible differences in demographic characteristics between YACs and non-YACs. In addition, we used independent T-tests to compare the perceived life balance and psychological functioning between YACs and non-YACs. Results YACs and non-YACs were similar on all the demographic characteristics, except for living status; fewer YACs (44.6%) than non-YACs (59.3%) lived on their own, with or without other students/friends (χ2 = 16.3, p = 0.01). YACs perceived slightly less balance in life than non-YACs (d = -.29, p = .03). Both groups did not differ in experiencing burnout, affect, and life satisfaction (all p > .05). They experienced high levels of burnout and moderate levels of life satisfaction. Discussion Although YACs perceived a little less balance in life than non-YACs, this was not reflected in their psychological functioning. Healthcare professionals and school counselors may need to recognise the critical phase of all young adults and provide the support that could, for example, help them reduce burnout and enhance their quality of life.
Exploring the support needs of young adult caregivers, their issues, and preferences towards a web-based tool: a mixed-method study
Background Young adult caregivers (YACs, aged 18–25) who take care of a loved one may juggle between caregiving responsibilities and other life areas such as education and social life, leading to an imbalance in their lives. The web-based tool ‘MantelzorgBalans’ aims to support informal caregivers (ICGs) in balancing caregiving tasks and activities in other life areas. However, this tool was designed to support ICGs of loved ones receiving palliative care and is not yet tailored to the needs of YACs. In order to do so, in this study we aim to explore (i) challenges and support needs of YACs in caregiving, (ii) their needs towards the content of the ‘MantelzorgBalans’ tool, and (iii) issues they encountered in using the tool and their preferences for adaptation of the tool. Method We conducted semi-structured interviews and usability testing with 13 student YACs in the Netherlands. Within usability testing, we used three approaches: (i) a thinking-aloud approach (verbalizing thoughts while using the tool), (ii) a task-based performance approach (scoring task completion rate), and (iii) questionnaires. We used thematic analysis to synthesize the qualitative data. For the quantitative data, we calculated frequencies and mean scores. Results Our findings suggest that the majority of YACs faced challenges in balancing caregiving with life areas such as education and social life. They needed support from healthcare professionals who could listen to them without judging them. With respect to the MantelzorgBalans tool, YACs needed more information on how to provide emotional support to their loved one and the emotional support that is available for them. In regards to the aesthetics, they preferred bright colours and more visuals in the tool. Overall, they were satisfied with the information presented in the tool, but they were neutral in their willingness to use it in the future. Conclusion From this study, we learn that YACs may experience specific challenges and needs in general, and towards a web-based tool in specific. In the near future, it will be important to develop digital tools to support YACs that match their specific needs. This may enable healthcare professionals to offer targeted and personalized digital support to YACs in future.
Informal caregivers (ICGs) provide care to their family or friends in case of an illness, disability, or frailty. The caregiving situation of informal caregivers may vary based on the relationship they have with the care recipient (CR), e.g., being a spouse or being an adult child. It might be that these different ICGs also have different needs. This study aims to explore and compare the needs of different groups of ICGs based on the relationship they have with their CR. We conducted a systematic review, performing a search in the databases PubMed, CINAHL, and PsycINFO. We included studies with qualitative, quantitative, or mixed-method study designs. We analyzed the data using the thematic analysis method. We included 22 articles (18 qualitative; 4 quantitative). The included articles reported the needs of ICGs taking care of a spouse (spousal ICGs), parent (adult child ICG), or sibling aged 18 years or above (adult sibling ICGs). We did not include other relationships due to the limited number of articles on these relationships. The most prominent needs reported by the spousal, adult child, and adult sibling ICGs were the need for information and need for support. The three groups differed in their needs as well. Adult child and adult sibling ICGs indicated a need to be acknowledged by the people around them for their role of carer, while they also needed to be seen as an individual having their own personal needs. Moreover, spousal ICGs indicated a unique need of redefining their role and relationship with their CR. Overall, the findings indicate that along with experiencing common needs, the investigated groups have unique needs as well. Knowing the needs of different groups of ICGs can help develop tailored solutions to improve the quality of life of the ICGs and their CR.Systematic Review Registration: [www.crd.york.ac.uk/prospero/], identifier [CRD42020188560].
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