Exploring the support needs of young adult caregivers, their issues, and preferences towards a web-based tool: a mixed-method study

Springer Science and Business Media LLC - Tập 2 Số 1
Srishti Dang1, Anne Looijmans1, Nikita Sharma2, Annemarie Jansen2, Mariët Hagedoorn1
1University of Groningen, University Medical Center Groningen, Groningen, the Netherlands
2University of Twente, Enschede, The Netherlands

Tóm tắt

Abstract 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.

Từ khóa


Tài liệu tham khảo

Levine C, Hunt GG, Halper D, Hart AY, Lautz J, Gould DA. Young adult caregivers: A first look at an unstudied population. Am J Public Health. 2005;95(11):2071–5 (PMID:16195506).

Arnett JJ. A theory of development from the late teens through the twenties. Am Psychol. 2000;55(5):469–80 (PMID:10842426).

Tanner JL, Arnett JJ. The emergence of emerging adulthood: The new life stage between adolescence and young adulthood. InRoutledge handbook of youth and young adulthood 2016 Oct 14 (pp. 50–56). Routledge.. Available from: http://www.tandfebooks.com/isbn/9781315753058

Rindfuss RR. The young adult years: Diversity, structural change, and fertility. Demography. 1991;28(4):493–512 (PMID: 1769399).

Day C. Young adult carers: a literature review informing the re-conceptualisation of young adult caregiving in Australia. J Youth Stud. 2015;18(7):855–66.

Haugland BS, Hysing M, Sivertsen B. The burden of care: a national survey on the prevalence, demographic characteristics and health problems among young adult carers attending higher education in Norway. Front Psychol. 2020;10:2859 PMCID: PMC6989434.

Becker S, Sempik J. Young adult carers: The impact of caring on health and education. Child Soc. 2019;33(4):377–86.

Hagberg P, Johansson P, Nordqvist E, & Hanson E. Tearing down barriers to employment & education: for young, black and minority ethnic carers: national reports. IARS Publications. 2017, 1. p. 105–124.

Becker F, Becker S. Young adult carers in the UK. Experiences, needs and services for carers aged. 2008:16–24.

Rose HD, Cohen K. The experiences of young carers: A meta-synthesis of qualitative findings. J Youth Stud. 2010;13(4):473–87.

Kettell L. Young adult carers in higher education: the motivations, barriers and challenges involved–a UK study. J Furth High Educ. 2020;44(1):100–12.

Mickens MN, Goldberg LD, Perrin B, Librandi H. Undergraduate caregivers for individuals with chronic conditions: stressors and needs. Phys Med Rehabil Res. 2017;2:1–7. https://doi.org/10.15761/PMRR.1000153.

Pitsenberger DJ. Juggling work and elder caregiving: work–life balance for aging American workers. AAOHN J. 2006;54(4):181–7 (PMID: 16629008).

Bacharz KC, Goodmon LB. The caregiver’s burden: Psychological distress in the younger adult caregiver. Modern Psychol Stud. 2017;23(1):5.

De Carvalho AF, Schinkinger S, Breskovic I, Tellioglu H, Fabiano A, De Carvalho P, Schinkinger S, Breskovic I, Tellio H. Technology for Work-Life Balance in Terms of Informal Care Work. InECSCW 2013 Workshop “CSCW at the Boundary of Work and Life 2013 (pp. 1–6).

Greene J, Cohen D, Siskowski C, Toyinbo P. The relationship between family caregiving and the mental health of emerging young adult caregivers. J Behav Health Serv Res. 2017;44(4):551–63 (PMID:27460072).

Leu A, Frech M, Jung C. “You don’t look for it”—A study of Swiss professionals’ awareness of young carers and their support needs. Health Soc Care Community. 2018;26(4):e560–70 (PMID:29642272).

van der Werf HM, Luttik MLA, de Boer A, Roodbol PF, Paans W. Growing up with a chronically ill family member—The impact on and support needs of young adult carers: A scoping review. Int J Environ Res Public Health. 2022;19(2):855 (PMID:35055678).

Ali L, Ahlström BH, Krevers B, Skärsäter I. Daily life for young adults who care for a person with mental illness: A qualitative study. J Psychiatr Ment Health Nurs. 2012;19(7):610–7 (PMID:22074116).

Ali L, Ahlström BH, Krevers B, Sjöström N, Skärsäter I. Support for young informal carers of persons with mental illness: a mixed-method study. Issues Ment Health Nurs. 2013;34(8):611–8 (PMID:23909673).

van der Werf HM, Paans W, Emmens G, Francke AL, Roodbol PF, Luttik ML. Expectations and prospects of young adult caregivers regarding the support of professionals: A qualitative focus group study. Int J Environ Res Public Health. 2020;17(12):4299 (PMID:32560150).

Scott D, Hudson P, Charnley K, Payne C, Westcott G. Development of an eHealth information resource for family carers supporting a person receiving palliative care on the island of Ireland. BMC Palliat Care. 2019;18(1):1–1 (PMID:31470841).

Anderberg P, Barnestein-Fonseca P, Guzman-Parra J, Garolera M, Quintana M, Mayoral-Cleries F, Lemmens E, Berglund JS. The effects of the digital platform support monitoring and reminder technology for mild dementia (SMART4MD) for people with mild cognitive impairment and their informal carers: protocol for a pilot randomized controlled trial. JMIR research protocols. 2019;8(6):e13711 (PMID: 31228177).

Slev VN, Pasman HR, Eeltink CM, van Uden-Kraan CF, Verdonck-de Leeuw IM, Francke AL. Self-management support and eHealth for patients and informal caregivers confronted with advanced cancer: an online focus group study among nurses. BMC Palliat Care. 2017;16(1):1–2 (PMID: 29162081).

Darley A, Coughlan B, Furlong E. People with cancer and their family caregivers’ personal experience of using supportive eHealth technology: a narrative review. Eur J Oncol Nurs. 2021;1(54):102030 (PMID:34531122).

Sherifali D, Ali MU, Ploeg J, Markle-Reid M, Valaitis R, Bartholomew A, Fitzpatrick-Lewis D, McAiney C. Impact of internet-based interventions on caregiver mental health: systematic review and meta-analysis. J Med Internet Res. 2018;20(7):e10668 (PMID:29970358).

Slev VN, Mistiaen P, Pasman HR, Verdonck-de Leeuw IM, van Uden-Kraan CF, Francke AL. Effects of eHealth for patients and informal caregivers confronted with cancer: a meta-review. Int J Med Informatics. 2016;1(87):54–67 (PMID:26806712).

Li Y, Li J, Zhang Y, Ding Y, Hu X. The effectiveness of e-Health interventions on caregiver burden, depression, and quality of life in informal caregivers of patients with cancer: A systematic review and meta-analysis of randomized controlled trials. Int J Nurs Stud. 2022;17:104179 (PMID:35124473).

McKechnie V, Barker C, Stott J. Effectiveness of computer-mediated interventions for informal carers of people with dementia—a systematic review. Int Psychogeriatr. 2014;26(10):1619–37 (PMID:24989249).

2020. https://balans.mantelzorg.nl/

Kivunja C. Theoretical perspectives of how digital natives learn. Int J Higher Educ. 2014;3(1):94–109.

Martin-Hammond A, Ali A, Hornback C, Hurst AK. Understanding design considerations for adaptive user interfaces for accessible pointing with older and younger adults. InProceedings of the 12th International Web for All Conference 2015 May 18 (pp. 1–10).

Zimerman M. Digital natives, searching behavior and the library. New Library World. 2012 Mar 23.

Villanti AC, Johnson AL, Ilakkuvan V, Jacobs MA, Graham AL, Rath JM. Social media use and access to digital technology in US young adults in 2016. J Med Internet Res. 2017;19(6):e7303 (PMID:28592394).

Moran K. Designing for young adults (ages 18–25). Retrieved from Nielsen Norman Group’s website:

Lazard AJ, Pikowski J, Horrell L, Ross JC, Noar SM, Sutfin EL. Adolescents’ and young adults’ aesthetics and functionality preferences for online tobacco education. J Cancer Educ. 2020;35(2):73–9 PMCID: PMC6687578.

Milward J, Deluca P, Drummond C, Watson R, Dunne J, Kimergård A. Usability testing of the BRANCH smartphone app designed to reduce harmful drinking in young adults. JMIR Mhealth Uhealth. 2017;5(8):e7836 PMCID: PMC5566629.

Fusch PI, Ness LR. Are we there yet? Data saturation in qualitative research. Qual Rep. 2015;20(9):1408.

Hansen G. Handbook of Translation Studies - Computer-aided translation. 2010. ISBN:978 90 272 0331 1

de Boer PS, van Deursen AJ, van Rompay TJ. Internet-of-things skills among the general population: task-based performance test using activity trackers. JMIR Hum Factors. 2020;7(4):e22532.

Albert B, Tullis T. Measuring the user experience: collecting, analyzing, and presenting usability metrics. Newnes; 2013 May 23.

Laugwitz B, Held T, Schrepp M. Construction and evaluation of a user experience questionnaire. InSymposium of the Austrian HCI and usability engineering group. 20. Berlin, Heidelberg: Springer; 2008. p. 63–76.

Lewis JR. Psychometric evaluation of an after-scenario questionnaire for computer usability studies. ACM SIGCHI Bull. 1990;23(1):78–81.

Meschtscherjakov A, Gärtner M, Mirnig A, Rödel C, Tscheligi M. The persuasive potential questionnaire (ppq): Challenges, drawbacks, and lessons learned. InInternational Conference on Persuasive Technology 2016 Apr 5 (pp. 162–175). Springer, Cham.

Orlowski SK, Lawn S, Venning A, Winsall M, Jones GM, Wyld K, Damarell RA, Antezana G, Schrader G, Smith D, Collin P. Participatory research as one piece of the puzzle: a systematic review of consumer involvement in design of technology-based youth mental health and well-being interventions. JMIR human factors. 2015;2(2):e4361 PMCID: PMC4797690.

Fleming T, Merry S, Stasiak K, Hopkins S, Patolo T, Ruru S, Latu M, Shepherd M, Christie G, Goodyear-Smith F. The importance of user segmentation for designing digital therapy for adolescent mental health: findings from scoping processes. JMIR Ment Health. 2019;6(5):e12656 PMCID: PMC6707580.

Struik LL, Bottorff JL, Baskerville NB, Oliffe J, Crichton S. Comparison of Developers’ and End-Users’ Perspectives About Smoking Cessation Support Through the Crush the Crave App. JMIR mHealth and uHealth. 2019;7(3):e10750 PMCID: PMC6427095.

Cristancho-Lacroix V, Moulin F, Wrobel J, Batrancourt B, Plichart M, De Rotrou J, Cantegreil-Kallen I, Rigaud AS. A web-based program for informal caregivers of persons with Alzheimer’s disease: an iterative user-centered design. JMIR research protocols. 2014;3(3):e3607 (PMID: 25263541).

Pope ND, Baldwin PK, Gibson A, Smith K. Becoming a Caregiver: Experiences of Young Adults Moving into Family Caregiving Roles. J Adult Dev. 2022;29(2):147–58.

Dellmann-Jenkins M, Blankemeyer M, Pinkard O. Incorporating the elder caregiving role into the developmental tasks of young adulthood. Int J Aging Hum Dev. 2001;52(1):1–8 (PMID: 11310571).

Jensen LA, Arnett JJ. Going global: New pathways for adolescents and emerging adults in a changing world. J Soc Issues. 2012;68(3):473–92.

Arnett JJ. Emerging adulthood: What is it, and what is it good for? Child development perspectives. 2007;1(2):68–73.

Broese van Groenou MI, De Boer A. Providing informal care in a changing society. Eur J Ageing. 2016;13(3):271–9 PMID: 27610055.

Sihto T. Distances and proximities of care: Analysing emotio-spatial distances in informal caring. Emot Space Soc. 2018;1(29):62–8.

Medvedskaya EI. Features of the attention span in adult Internet users. RUDN Jo Psychol Pedagogics. 2022;19(2):304–19.

Subramanian KR. Myth and mystery of shrinking attention span. Int J Trend Res Dev. 2018;5(1).

Quintero G, Bundy H. “Most of the time you already know”: pharmaceutical information assembly by young adults on the Internet. Subst Use Misuse. 2011;46(7):898–909 (PMID: 21599506).

Wozney L, Baxter P, Newton AS. Usability evaluation with mental health professionals and young people to develop an Internet-based cognitive-behaviour therapy program for adolescents with anxiety disorders. BMC Pediatr. 2015;15(1):1–1 (PMID: 26675420).

Djamasbi S, Siegel M, Tullis T, Generation Y. web design, and eye tracking. Int J Hum Comput Stud. 2010;68(5):307–23.

Djamasbi S, Siegel M, Skorinko J, Tullis T. Online viewing and aesthetic preferences of generation y and the baby boom generation: Testing user web site experience through eye tracking. Int J Electron Commer. 2011;15(4):121–58.

Harari GM, Müller SR, Stachl C, Wang R, Wang W, Bühner M, Rentfrow PJ, Campbell AT, Gosling SD. Sensing sociability: Individual differences in young adults’ conversation, calling, texting, and app use behaviors in daily life. Journal of personality and social

Miller B, Cafasso L. Gender differences in caregiving: fact or artifact?. The gerontologist. 1992 Aug 1;32(4):498–507.psychology. 2020 Jul;119(1):204. PMID: 31107054.

Sharma N, Chakrabarti S, Grover S. Gender differences in caregiving among family-caregivers of people with mental illnesses. World J Psychiatry. 2016;6(1):7.

Gallicchio L, Siddiqi N, Langenberg P, Baumgarten M. Gender differences in burden and depression among informal caregivers of demented elders in the community. Int J Geriatr Psychiatry. 2002;17(2):154–63.

Akpınar B, Küçükgüçlü Ö, Yener G. Effects of gender on burden among caregivers of Alzheimer’s patients. J Nurs Scholarsh. 2011;43(3):248–54.

Thông tin
Thông tin xuất bản

Springer Science and Business Media LLC

Tập 2 Số 1

Thông tin tác giả