Information needs of a vulnerable community: The case of visually impaired first-time mothers in Malaysia

Main Article Content

Siti Nurul
Kiran Kaur

Abstract

Interest in exploring women’s new experiences as they step into motherhood and their information
behaviour has increased over the last decade. However, little attention has been given to vulnerable
first-time mothers, specifically those with visual impairment. This study aims to provide an insight
into the information needs of first-time mothers with visual impairments as they embrace
motherhood. A case study design was employed to capture the information experiences of first-time
mothers with visual impairment during their first year of motherhood. Three data collection
techniques were employed, namely interviews, observations and audio diary, that provided rich and
deep insights into the experiences of these mothers. The codes-to-theory model for qualitative
inquiry resulted in identifying five main facets of information needs, namely baby care, mother care,
family welfare, daily living and disability rights. Wilson’s model of information behavior is used to
provide an understanding of how these mothers’ personal factors, role demands and environmental
context shape their information needs as they take on the role as mothers. The findings raise
implications for strategies to facilitate this vulnerable community’s information provisions,
specifically in the context of visually impaired mothers.

Downloads

Download data is not yet available.

Article Details

How to Cite
Siti Nurul Maryam, & Kaur, K. (2024). Information needs of a vulnerable community: The case of visually impaired first-time mothers in Malaysia. Malaysian Journal of Library and Information Science, 29(1), 1–28. https://doi.org/10.22452/mjlis.vol29no1.1
Section
Articles
Author Biography

Siti Nurul, Universiti Malaya

Lecturer, School of Information Science, College of Computing, Informatics and Mathematics, Universiti Teknologi MARA Selangor, MALAYSIA

References

Adesina, O., Tunde, T., Oyedokun, A., Zainab, O., & Florence, O. (2022). Information behaviour of visually impaired users in the era of COVID-19 Pandemic in Lagos State, Nigeria. Journal of Balkan Libraries Union, 9(1), 14-18. https://doi.org/10.16918/jblu.1080828.

Ahmed, M.R., & Naveed, M.A. (2021). Information accessibility for visually impaired students. Pakistan Journal of Information Management and Libraries, 22, 16-36. http://journals.pu.edu.pk/.

Aizan Sofia, A., Azianura Hani, S., & Khairul Farhah, K. (2019). Barriers to marriage and motherhood: The experiences of disabled women in Malaysia. The History of the Family, 25(2),246-264. https://doi.org/10.1080/1081602X.2019.1663548.

Anthony, W. A. (1972). Societal rehabilitation: Changing society's attitudes toward the physically and mentally disabled. Rehabilitation Psychology, 19(3), 117–126. https://doi.org/10.1037/h0090877.

Azzopardi-Lane, C., & Callus, A. M. (2016). Disability and parenting: The experiences of four women with disability. Considering Disability Journal, 1(3), 3-33.

Barnes, C. (1992). Institutional discrimination against disabled people and the campaign for anti-discrimination legislation. Critical Social Policy, 12(34), 5-22.

Bassoumah, B., & Mohammed, A.A. (2020). The socio-cultural challenges to maternal and neonatal care: The views of women with disabilities receiving maternity care in the Chereponi district of the Northern Ghana. Scientific African, 7. https://doi.org/10.1016/j.sciaf.2019.e00258.

Belkin, N. J. (2005). Anomalous state of knowledge. In K. E. Fisher, S. Erdelez, & L. E. McKechnie (Eds.), Theories of information behaviour (pp. 44-48). American Society for Information Science and Technology by Information Today.

Berget, G., & Macfarlane, A. (2020). What is known about the impact of impairments on information seeking and searching? Journal of the Association for Information Science and Technology, 71, 596-611.

Beverley, C. A., Bath, P. A., & Barber, R. (2007). Can two established information models explain the information behaviors of visually impaired people seeking health and social care information? Journal of Documentation, 63(1), 9-32.

Beverley, C. A., Bath, P. A., & Booth, A. (2004). Health information needs of visually impaired people: A systematic review of the literature. Health & Social Care in the Community, 12(1), 1-24. https://doi.org/10.1111/j.1365-2524.2004.00460.x

Beverley, C.A., Bath, P.A. and Barber, R. (2011) Health and social care information for visually-impaired people. Aslib Proceedings; New Information Perspectives, 63 (2-3), 256 - 274. http://dx.doi.org/10.1108/00012531111135691.

Bodaghi, N.B., Cheong, L.S., & Ngah, Z.A. (2019). Transition to campus life: The perceptions of visually impaired students towards librarians' communication skills. LIBER Quarterly: The Journal of the Association of European Research Libraries, 29(1),1-24.

Bogdan, R., & Taylor, S. J. (1989). Relationships with severely disabled people: The social construction of humanness. Social Problems, 36(2), 135-148.

Bordens, K., & Abbott, B.B. (2020). Research designs and methods: A process approach (11th ed.). McGraw Hill.

Case, D. O., & Given, O.L. (2016). What’s the use? Measuring the frequency of studies of information outcomes. Journal of the Association for Information Science & Technology, 67(3), 649-661.

Cezario, K. G., Oliveira, P. M. P. D, Sousa, A. A. S., Carvalho, Q. C. M., Pennafort, V. P. D. S., & Santos, L. A. P. F. D. (2017). Blind parents and nutrition of children: Experiences and care. Revista Da Rede de Enfermagem Do Nordeste, 17(6), 850-857. https://doi.org/10.15253/2175-6783.2016000600017.

Commission for Healthcare Audit and Inspection. (2008). Towards better births: A review of maternity services in England. Healthcare Commission. http://image.guardian.co.uk/sys-files/Society/documents/2008/07/10/ Towards_better_births.pdf

Darvill, R., Skirton, H., & Farrand, P. (2008, July). Psychological factors that impact on women’s experiences of first-time motherhood: A qualitative study of the transition. Midwifery, 26(3), 357–366.

Davies, J. E. (2007). An overview of international research into the library and information needs of visually impaired people. Library Trends, 55(4), 785-795.

Demo, D.H., & Cox, M.J. (2000). Families with young children: A review of research in the 1990s. Journal of Marriage and the Family, 62 (4), 876-896.

Department of Social Welfare. (2024). Statistik Pendaftaran OKU mengikut negeri dan kategori sehingga 31 Januari 2023. Retrieved March 16, 2024, from http://www.jkm.gov.my/jkm/uploads/files/pdf/Buku%20JKM%202014.pdf.

Frederick, A. (2015). Between stigma and mother-blame: Blind mothers’ experiences in USA hospital postnatal care. Sociology of Health and Illness, 37(8), 1127-1141.

Frederick, A. (2014). Mothering while disabled. Contexts,13(4), 30-35. https://doi.org/10.1177/1536504214558214.

Hamid, K., Iqbal, M. W., Muhammad, H. A. B., Fuzail, Z., Ghafoor, Z. T., & Ahmad, S. (2022). Usability evaluation of mobile banking applications in digital business as emerging economy. International Journal of Computer Science and Network Security, 22(1), 250-260.

Horner, J.W, Darney, B.G, Kulkarni, R. S, Quigley, B., & Caughey, A. B. (2016). Pregnancy among US women: Differences by presence, type, and complexity of disability. American Journal of Obstetrics and Gynecology, 214(4), 529e1-529e9. https://doi.org/10.1016/j.ajog.2015.10.929.

Islam, M. R. (2015). Rights of the People with disabilities and social exclusion in Malaysia. International Journal of Social Science and Humanity, 5(2),171–177. https://doi.org/10.7763/ijssh.2015.v5.447.

Iezzoni, L.I., Wint A.J., Smeltzer S.C., & Ecker, J.L. (2017). Recommendations about pregnancy from women with mobility disability to their peers. Women’s Health Issues, 27(1), 75-82.

Kazuye Kimura, A. (2018). Defining, evaluating, and achieving accessible library resources: A review of theories and methods. Reference Services Review, 46(3), 425–438. https://doi.org/10.1108/RSR-03-2018-0040.

Kitchin, R. (1998). 'Out of Place',' Knowing One's Place': Space, power and the exclusion of disabled people. Disability & Society, 13(3), 343-356. https://doi.org/10.1080/09687599826678.

Khowaja, S., & Fatima, N. (2023). Information seeking behaviour of visually impaired university students in India. Journal of Library and Information Technology, 43(3),164 – 168.

Krishnamoorthi, C., Shariff, A.A.M., Yahya, M.A., Hassan, M.S., & Kamaruddin, H. (2024). Protecting the well-being of the people with disabilities in achieving the nation’s Sustainable Development Goals. In IOP Conference Series: Earth and Environmental Science, Vol. 1304, No. 1:012006.

Kuhlthau, C. C. (2005). Kuhlthau’s information search process. In K. E. Fisher, S. Erdelez and L. E. F. McKechnie (Eds.), Theories of Information Behaviour: 230-234. Information Today, Inc.

Laski, F. J. (1975). Legal advocacy, positive factor in rights for disabled people. American Rehabilitation, 1(5), 12-17.

Law, K. H., Jackson, B., Guelfi, K., Nguyen, T., & Dimmock, J. A. (2018). Understanding and alleviating maternal postpartum distress: Perspectives from first-time mothers in Australia. Social Science & Medicine, 204, 59-66. https://doi.org/10.1016/j.socscimed.2018.03.022.

Lawler D., Lalor J., & Begley C. (2013). Access to maternity services for women with a physical disability: a systematic review of literature. International Journal of Childbirth, 3(4), 203-217.

Leahy-Warren, P., McCarthy, G., & Corcoran, P. (2012). First-time mothers: Social support, maternal parental self-efficacy and postnatal depression. Journal of Clinical Nursing, 21(3–4), 388–397.

Lebron, C. N., St. George, S. M., Eckembrecher, D. G., & Alvarez, L. M. (2020). “Am I doing this wrong?” Breastfeeding mothers’ use of an online forum. Maternal and Child Nutrition, 16(1), 1–11. https://doi.org/10.1111/mcn.12890.

Lorenzo‐Blanco, E. I., Meca, A., Piña‐Watson, B., Zamboanga, B. L., Szapocznik, J., Cano, M. Á., & Soto, D. W. (2019). Longitudinal trajectories of family functioning among recent immigrant adolescents and parents: Links with adolescent and parent cultural stress, emotional well‐being, and behavioural health. Child Development, 90(2), 506-523.

Loudon, K., Buchanan, S. and Ruthven, I. (2016). The everyday life information-seeking behaviours of first-time mothers. Journal of Documentation, Vol.72, no.1: 24-46.

Madge, C., & O’connor, H. (2006). Parenting gone wired: Empowerment of new mothers on the internet?” Social and Cultural Geography, 7(2), 199-220. https://doi.org/10.1080/14649360600600528.

Mahony, C., Heavin, C., & Sammon, D. (2022). Identifying design guidelines for online information resources: A study of expectant and new mothers. Information Technology and People, 35(8), 23-51. https://doi.org/10.1108/ITP-04-2020-0180.

McKenzie, P. (2003). A model of information practices in accounts of everyday-life information seeking. Journal of Documentation, 59(1),19-40.

Moore, N. (2002). A model of social information need. Journal of Information Science, 28(4), 297-303.

Moran, K. M., Turiano, N. A., & Gentzler, A. L. (2018). Parental warm during childhood coping and well-being in adulthood. Journal of Family Psychology, 32(5),610-621. https://doi.org/10.1037/fam0000401.

Mulauzi, F., Delphine, C., Ivy, A., Emmanuel, C., Charles, M., & Dexter, H. (2020). Health information literacy, information needs and information seeking behaviors among mothers with children under the age of five: A case study of Chilenje Level One Hospital in Lusaka, Zambia. International Journal of Research Publication and Reviews, 1(4), 43-59.

Munin, N., & Yu, H. (2018). Adaptive equipment technology and services for supporting disabled users: A case study in the Central Library, University of Malaya. International Journal of Academic Research in Business and Social Sciences, 7(12), 445-460. https://doi.org/10.6007/IJARBSS/v7-i12/3626.

Munro, E., Holmes, L., & Ward, H. (2005). Researching vulnerable groups: Ethical issues and the effective conduct of research in local authorities. British Journal of Social Work, 35(7), 1023-1024.

Nasir, M.N.A., & Hussain, R.B.M. (2021). The roles of organizations for blind persons in research-oriented activities: a research proposal. International Journal for Studies on Children, Women, Elderly and Disabled, 13. https://www.ijcwed.com/wp-content/uploads/2021/09/IJCWED13_204.pdf.

Nelson, A.M. (2003). Transition to motherhood. Journal of Obstetric, Gynecologic and Neonatal Nursin, 32(4), 465–467.

Okiki, O.C., & Okonj, P.E. (2019). Access to information resource and opportunities for social inclusiveness: perceptions of visually impaired students of higher education institutions in Lagos, Nigeria. Gateway Information Journal, 20(1). Retrieved from https://www.gatewayinfojournal.org/index.php/gij/article/view/23

Oliveira, P. M. P. D., Pagliuca, L. M. F., Cezario, K. G., Almeida, P. C. D., & Beserra, G. D. L. (2017). Breastfeeding: validation of assistive audio technology for the visually impaired individual. Acta Paulista de Enfermagem, 30(2), 122-128.

Oliver, M. (1990). The politics of disablement: A sociological approach. St. Martin’s Press.

Opoku, M.P., Swabey, K., Pullen, D., & Dowden,T. (2019). Poverty alleviation among persons with disabilities via United Nations’ sustainable development goals in Ghana: Voices of stakeholders with disabilities. Sustain Development, 27(1), 175–82.

Panahi, S., Mahmoudvand, F., & Sedghi, S. (2020). Health Information-Seeking Behaviour of Iranian first-time Mothers and First-Time Pregnant Women in Northwest Health Centers of Tehran. Journal of Community Health Research, 9(4),222–232. https://doi.org/10.18502/jchr.v9i4.4975

Parkes, J., Caravale, B., Marcelli, M., Franco, F., & Colver, A. (2011). Parenting stress and children with cerebral palsy: a European cross-sectional study. Developmental Medicine And Child Neurology, 53(9), 815-821.

Pawlowska-Cyprysiak K., & Konarska, M. (2013). Working Life of Women with Disabilities - A Review. International Journal of Occupational Safety and Ergonomics, 19(2), 409–414.

Pebrianti, H. (2023). Access to information resources by students with disabilities: Case study Dar al-Hikmah IIUM Library. Inkunabula: Journal of Library Science and Islamic Information, 2(2), 59-70.

Persons with Disabilities Acts. (2008). http://www.agc.gov.my/agcportal/uploads/files/ Publications/LOM/MY/Akta%20685%20%20Akta%20Orang%20Kurang%20Upaya%202008.pdf.

Powell, R.M., Mitra, M., & Smeltzer, S.C. (2018). Breastfeeding among women with physical disabilities in the United States. Journal of Human Lactation, 34(2), 253-261. doi:10.1177/0890334417739836

Richter, N., Bondü, R., Spiess, C. K., Wagner, G. G., & Trommsdorff, G. (2018). Relation among maternal life satisfaction, shared activities, and child well-being. Frontiers Psychology, 9, 739. https://doi.org/10.3389/fpsyg.2018.00739.

Richter, N., Bondü, R., & Trommsdorff, G. (2022). Linking transition to motherhood to parenting, children’s emotion regulation, and life satisfaction: A longitudinal study. Journal of Family Psychology, 36(2), 291-300. https://doi.org/10.1037/fam0000868.

Robson, A., & Robinson, L. (2013). Building of models of information behaviour: linking information seeking and communication. Journal of Documentation, 69(2), 69-193.

Roller, M.R. and Lavrakas, P.J. 2015. Applied Qualitative Research Design: A Total Quality Framework Approach. Guilford Press.

Ruthven, I., Buchanan, S., & Jardine, C. (2018a). Relationships, environment, health and development: the information needs expressed online by young first-time mothers. Journal of the Association for Information Science and Technology, 69(8), 985-995.

Ruthven, I., Buchanan, S. and Jardine, C. (2018b). Isolated, overwhelmed, and worried: young first-time mothers asking for information and support online, Journal of the Association for Information Science and Technology, 69(9), 1073-1083.

Saldana, J. (2016). The coding manual for qualitative researchers (3rd ed.). SAGE.

Shahbazzadegan, S., Behbodi Moghadam, Z., Ghiyasvandian, S., Shamshiri, M., Mozaffari, N., & Mohammadi, M. (2018). Blind mothers’ experiences of marginalization: a hermeneutic phenomenological qualitative study. Journal of Qualitative Research in Health Sciences, 7(1), 23-34.

Shandra, C. L., Hogan, D. P., & Short, S. E. (2014). Planning for motherhood: Fertility attitudes, desires and intentions among women with disabilities. Perspectives on Sexual and Reproductive Health, 46(4), 203–210.

Shorey, S., Chee, C. Y. I., Ng, E. D., Chan, Y. H., San Tam, W. W., & Chong, Y. S. (2018). Prevalence and incidence of postpartum depression among healthy mothers: A systematic review and meta-analysis. Journal of Psychiatric Research, 104, 235–248. https://doi.org/10.1016/j.jpsychires.2018.08.001.

Shrivastava, S. R., Shrivastava, P. S., & Ramasamy, J. (2015). Antenatal and postnatal depression: A public health perspective. Journal of Neurosciences in Rural Practice, 6(1), 116–119.

Sink, K. K. (2009). Seeking newborn information as a resource for maternal support. Journal of Perinatal Education, 18(3), 30–38. https://doi.org/10.1624/105812409x461207.

Siti Mariam M., Nur Qurratu Ain Zahra M.Z., & Muzaitul Akma M.K.B. (2022). Knowledge, attitude and practice of exclusive breastfeeding among primipara at Baby Friendly Hospital (BFHI). Jurnal Islam dan Masyarakat Kontemporari, 23(1), 104-115.

Sonik, R. A., Parish, S. L., Mitra, M., & Nicholson, J. (2018). Parents with and without disabilities: Demographics, material hardship, and program participation. Journal of Intellectual & Developmental Disabilities, 88(4), 1–5.

Statistica.com (2021). Number of people with blindness worldwide in 2020, by age and gender. https://www.statista.com/statistics/1237876/number-blindness-by-age-gender/ #statisticContainer.

Stern, D. N. (1995). The motherhood constellation: A unified view of parent–infant psychotherapy. Basic Books.

Subekti, A. (2019). Analisis kebutuhan dan pencarian informasi ibu dengan kelahiran anak pertama periode postpartum: Studi kasus Whatsapp group Zona Mama. Baca: Jurnal Dokumentasi Dan Informasi, 40(2), 159-169. https://doi.org/10.14203/j.baca.v40i2.493.

Sung, H. Y., & Parboteeah, P. (2017). Diversity-related research reported in high-impact library and information science journal literature: A content analysis. Library & Information Science Research, 39(2), 77-84.

Taylor, R. S. (1968). Question-negotiation and information seeking in libraries. College & Research Libraries, 29(3), 178-194.

Tefera, B., Van Engen, M., Schippers, A., Eide, A., Kersten, A., & Van der Klink, J. (2018). Education, work, and motherhood in low- and middle-income countries: A review of equality challenges and opportunities for women with disabilities. Social Inclusion, 6(1), 82-93. https://doi.org/10.17645/si.v6i1.1206.

Wang, S., & Yu, J. (2017). Everyday information behaviour of visually impaired in China. Information Research, 22(1). https://files.eric.ed.gov/fulltext/EJ1138643.pdf.

Warkentin, T., Hermann, S., Watson, J., & Berndl, A. (2019). Breastfeeding strategies used by women with physical disabilities. American Journal of Obstetrics & Gynecology, 220(1), S209. https://doi.org/10.1016/j.ajog.2018.11.318.

Weinberg, N., & Williams, J. (1978). How the physically disabled perceive their disabilities. Journal of Rehabilitation, 44(3), 31-33.

Wentz, B., Pham. D., & Tressler, K. (2017). Exploring the accessibility of banking and finance systems for blind users. First Monday, 22(3). https://doi.org/10.5210/fm.v22i3.7036.

Wilson, T.D. (1991). On user studies and information needs. Journal of Documentation, 37(1), 3-15.

Wilson, T. D. (1997). Information behaviour: an interdisciplinary perspective. Information Processing and Management, 33(4), 551-572.

Wilson, T. D. (1999). Models of information behaviour research. Journal of Documentation, 55(3), 249-270.

Wint, A. J., Smith D.L., & Iezzoni L., I. (2016). Mothers with disability: Child care adaptations at home. American Journal of Occupational Therapy, 70(6), 7006220060p1-7006220060p7.

World Health Organization. (2011, January 1). Summary world report on disability. http://apps.who.int/iris/bitstream/10665/70670/1/WHO_NMH_VIP_11.01_eng. pdf.

Xie, I., Wang, S., & Saba, M. (2021). Studies on blind and visually impaired users in LIS literature: A review of research methods. Library & Information Science Research, 43(3). https://doi.org/10.1016/j.lisr.2021.101109 .

Xin, W. (2022). Lack of alternative: Chinese first-time mothers’ construction of social support network of online secondary groups. Digital Health, 8. https://doi.org/10.1177/20552076221129062.