“She looked like an Alien”. Experience and definitions children attach to a parental cancer diagnosis

DOIhttps://doi.org/10.1108/AJIM-06-2017-0142
Date15 January 2018
Pages78-103
Published date15 January 2018
AuthorSuzanie Adina Mat Saat,Mark Hepworth,Tom Jackson
Subject MatterLibrary & information science,Information behaviour & retrieval,Information & knowledge management,Information management & governance,Information management
She looked like an Alien
Experience and definitions children attach to a
parental cancer diagnosis
Suzanie Adina Mat Saat, Mark Hepworth and Tom Jackson
Centre for Information Management, Loughborough University,
Loughborough, UK
Abstract
Purpose The purpose of this paper is to explore the Malay childrens information needs from their
experience with parental cancer using information behaviour techniques to elicit sensitive information that
provided an indication of what children were thinking.
Design/methodology/approach Data collection adapted the participatory action research method and
used participatory-based techniques that included drawings, essays and interviews. Data explication used an
interpretative phenomenological analysis approach. Social constructionism, learning theory and cognitive
theory were used to analyse the data. In total, 32 participants took part, ten mothers with breast cancer at
different stages of their cancer journey, and 32 children between 6 and 18 years old.
Findings There are shortcomings in the provision of cancer information for Malay children. Unlike verbose
and difficult to digest medical definitions and descriptions about cancer and its treatment, the Malay children
defined cancer as having components made from their experiences and observations about how cancer
affected their parent. The findings explain the relationship between children participantsreaction to a health
situation and the subsequent processes they undergo to resolve their state of information need.
Originality/value It highlights the importance of determining information needs and the combined
methods used to gain and interpret the experience children face with a parental cancer diagnosis. The
findings about ethnic-based information problems, needs and provision for dependent children of cancer
patients are one of the original contributions of this research. To the best of the authorsknowledge, this
research is believed to be the first in-depth qualitative and highly participative study of the implications of
cancer for dependent children of Malay cancer patients.
Keywords Participatory action research, Information needs, Social constructionism, Children as cancer carers,
Learning theory, Sense making
Paper type Research paper
1. Introduction
[] (giggles) Her hair got less and less, until it was gone! Ahyo! That was scary, like alien!
I was afraid. Mama did not look like herself and I was scared.I pity her. She had no hair
and she had to wear a scarf even inside the house. I did not want to see her bald. I was worried
that she would be bald forever. That would have been bad. It is like [] umm []a girl must
have hair. If a girl does not have hair [] you are not a girl anymore?F6(C1).
Advances in medicine have contributed to the management and treatment of cancer as a
long-term chronic illness (Miller et al., 2016; Ljungman et al., 2014). Longevity and the
increased number of new cancer cases from among younger adults (Omar and Ibrahim,
2011, p. 31) continue to necessitate more economical cancer management (National Cancer
Institute, 2009, p. 1). A parallel increase developed in the prevalence for home-based care,
which in turn, also increased the number of dependent children experiencing parental
cancer (Barnes et al., 2000, p. 480; 2002, p. 209; Kornreich et al., 2008, p. 64).
This is illustrated by a comparative study of the number of new cancer cases from
among families in the USA, UK and Malaysia. A combination of data extrapolated from
cancer statistics (American Cancer Society, 2016; Macmillan Cancer Support, 2017; Abdul
et al., 2012) of 21-55-year-old adults who were considered in prime childbearing and
parenting years and, fertility rates from the World Bank suggested that approximately
3,182,177 American children, 673,474 British children and 246,087 Malaysian children were
Aslib Journal of Information
Management
Vol. 70 No. 1, 2018
pp. 78-103
© Emerald PublishingLimited
2050-3806
DOI 10.1108/AJIM-06-2017-0142
Received 7 June 2017
Revised 4 November 2017
Accepted 18 December 2017
The current issue and full text archive of this journal is available on Emerald Insight at:
www.emeraldinsight.com/2050-3806.htm
78
AJIM
70,1
possibly exposed to the vagaries of cancer while their parents convalesced at home.
Even though Malaysia recorded lowernumber of children, the ratiowas higher at 2.5 children
per household (Banci Penduduk dan Perumahan Malaysia, Jabatan Perangkaan, 2013).
Visser et al. (2004, 2007), Osborn (2007) and Edwards et al. (2008) reported that parental
cancer had a range of consequences from the aspect of childrens functioning and
psychosocial difficulties. Anxiety, fear and uncertainty were common emotional distresses
(Kornreichet al., 2008; Fourie, 2008; Buchwaldet al., 2011; Wats on etal., 200 6). However, unlike
these studies on latent, cognitive and behavioural development, this paper focusses on
meanings and experiential sense-making children develop arising from exposure to parents
cancer journeyand information provisions, andthe lack of. This is because while theconcern
to provide caregivers and people impacted by a health situation require special information
needs and attentionhas been long advocated (Granet, 2002; Dervin,2001; Kubler-Ross, 1969),
the domain is still in its infancy (Alzougool et al., 2013; Glassman, 2012; Fletcher et al., 2012).
Informationprovisions for children were mostlydeveloped either from the views of parentsas
proxies or without empirical proof of childrens actual needs and experiences .
Greig et al. (2013) also believed that children were a product of, and were influenced by
their ethnicity, level of education, social class, upbringing and other influencing elements.
An exploration of these influences may provide nuanced insight towards
information-seeking behaviours of children who were exposed to their parents recovery
and had a role in caregiving. Of particular interest was the increasingly evident role Malay
children had as caregivers. Specifically, very little research has been conducted with Malay
children that acknowledged and identified their roles, the influence of socio-cultural norms
and attitudes to information sharing within the family and community about cancer. These
gaps in knowledge were likely to have significant consequences for childrens development
in most non-English-speaking cultures like the Malay.
This paper began by quoting a childs fear about her mothers hair loss from
chemotherapy. Such reactions call for an understanding of what children experience,
understand and attribute to cancer. Continued evidence of emotional distress, childrens
functioning and psychosocial difficulties suggest that childrens experience, meanings and
sense-making about parental cancer were little understood and, that there were problems
and shortcomings in information provisions and the development of interventions.
This paper therefore aims to explore Malay childrens information needs and views about
parental cancer and their experience; specifically, childrens meaning and definition of
cancer, suggesting a better understanding for information needs resulting from experiences
and reactions that surround exposure to parental cancer and providing care.
Section 2 provides the theoretical background, discusses the research design, and details
the methods and approach used to collect and analyse the data. Section 3 informs on the
research design and Section 4 describes the used interpretative phenomenological analysis
(IPA) approach. Section 5 presents the findings and provides details of the most salient
constructs from the participantsresponses. The results of the said findings are discussed in
Section 6. The paper concludes by highlighting that children made sense of cancer through
their experience, observations and beliefs and how these findings impact on information
provision and the wider academic knowledge.
2. Theoretical background
This research was interdisciplinary in nature because it focussed on the various topics
related to information science (health informatics), cancer (patients information needs),
children (experience of young carers) and psychology (psychological consequences to
cancer). The scope of review strategy and search terms is illustrated in Figure 1.
Health professionals have begun to recognise cancer as a phenomenon experienced by
the entire family (Kristjanson and Ashcroft, 1994, p. 1). According to the National Cancer
79
She looked like
an Alien

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