Fear, coping and support- from the perspective of children aged 10-17-year old having acute lymphoblastic leukemia

ABSTRACT

Purpose

To describe experiences of fear, coping, and support in 10–17-year-old children under treatment for acute lymphoblastic leukaemia (ALL).

Methods

A longitudinal descriptive qualitative design was adopted. Ten children participated in one to three interviews each (24 interviews in all). Interviews were analysed using a matrix-based qualitative method.

Results

The variety of fears described related to uncertainty, pain and medical procedures, bodily changes and loss of control, complications, professionals’ attitudes, affected school results, and social isolation. Children used various strategies to deal with fear: some more general, to cope with the whole situation, and others more related to specific events such as treatment and tests. The most reported strategies we labelled Accepting the situation, Positive thinking, and Being an active agent. Less favourable strategies were also reported. Health care professionals, families, and friends offered valuable, but different kinds of, support.

Conclusions

Children aged 10 to 17 undergoing treatment for ALL experience various fears. Each experience is individual and changes over time, but there are common patterns. Most children used problem-solving or emotional-regulation strategies, but withdrawal was also reported. Even children who can deal with fear need support from their health care professionals, families, and friends.

KEYWORDS:

• Children
• fear
• coping
• support
• acute lymphoblastic leukaemia

Acknowledgments

We wish to thank all the children that participated in this research, and their parents who generously shared their time and effort by arranging for us to conduct the interviews. We also wish to thank the contact nurses at the Regional Child Oncology Centers who helped with the recruitment.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Data availability statement

The authors elect not to share data for confidentiality reasons.

Additional information

Funding

The research was funded by The Swedish Childhood Cancer Foundation [Grant number PR2009-0016].

Notes on contributors

Ingela Leibring

Ingela Leibring is a registered nurse and midwife, with a BSc in Nursing and a Degree of Licentiate of Philosophy in Educational work. She holds a position as a lecturer at Karlstad University, Sweden. She has previously conducted research about fear in younger children with acute lymphoblastic leukaemia.

Annica Kihlgren

Professor Annica Kihlgren has a background as a registered nurse in haematology nursing. Today, she is working at the School of Health Science, Faculty of Health and Medicine at Örebro University, Sweden. She is teaching at undergraduate, graduate and postgraduate levels, with focus on nursing and qualitative methods.

Agneta Anderzén-Carlsson

Agneta Anderzén-Carlsson is a paediatric nurse and professor who currently holds a position as a researcher at Örebro County Region, Sweden, as well as a part time position at the Inland Norway University of Applied Sciences, Elverum, Norway. She has two major research focuses: the health and wellbeing of children and families and the psychosocial health of people living with deafblindness.