Clare Williams - Mothers, Young People and Chronic Illness
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This title was first published in 2003: Although young people are generally very healthy, it has become clear that many of the health behaviours of young people can have serious consequences later in life. This is particularly so with the management of chronic illness, where poor management can result in serious long-term complications. This book explores how gender differentially affects both the ways in which young people manage chronic illness and the ways in which mothers care for their teenage sons and daughters. Until recently, where gender and health have been linked, the focus has typically been on women rather than men. However, there is growing interest in the health of men, with the recognition that masculinities and health interact in specific, sometimes detrimental ways. Most books examine either womens, or less commonly, mens health, but the comparative approach proposed reflects a growing academic and empirical trend which aims to develop new theoretical perspectives both on gender and on the relationship between gender and health. The book also challenges assumptions that gender is static, by exploring the effects of gender at a specific time of transition in the life course. The focus on adolescence is important, as it is seen by many to be the time when heterosexual values are most powerfully pursued and enforced, thus enabling interactions between gender and health to be thrown into relief. The approach adopted takes issue with many current ideas about young people, which tend to portray them as autonomous individuals, acting independently. For example, in terms of health care for young people with a chronic illness, health professionals generally adopt an individualistic approach, stressing the importance of independence for young people. Rather than seeing young people as purely autonomous, this book relocates them within families, in transition between childhood and adulthood and acting interdependently with other family members. Little is known about the complex deci
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Clare Williams
Kelly Gurnett
Christine Rich
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Mothers, Young People and Chronic Illness
This book is dedicated to three generations of women:
my mother, Barbara, my sister, Carol, and my daughter, Rebecca
my mother, Barbara, my sister, Carol, and my daughter, Rebecca
First published 2002 by Ashgate Publishing
Reissued 2018 by Routledge
2 Park Square, Milton Park, Abingdon, Oxon OX14 4RN
711 Third Avenue, New York, NY 10017, USA
Routledge is an imprint of the Taylor & Francis Group, an informa business
Copyright Clare Williams 2002
All rights reserved. No part of this book may be reprinted or reproduced or utilised in any form or by any electronic, mechanical, or other means, now known or hereafter invented, including photocopying and recording, or in any information storage or retrieval system, without permission in writing from the publishers.
Notice:
Product or corporate names may be trademarks or registered trademarks, and are used only for identification and explanation without intent to infringe.
Publishers Note
The publisher has gone to great lengths to ensure the quality of this reprint but points out that some imperfections in the original copies may be apparent.
Disclaimer
The publisher has made every effort to trace copyright holders and welcomes correspondence from those they have been unable to contact.
A Library of Congress record exists under LC control number: 2001099654
ISBN 13: 978-1-138-73797-6 (hbk)
ISBN 13: 978-1-315-18508-8 (ebk)
Contents
Guide
Firstly, I am very grateful to all of the young people and their parents who contributed to this book by giving so generously of their time and their thoughts. I owe a considerable and ongoing debt to Sara Arber at the University of Surrey, who supervised my doctoral work and continues to provide encouragement and advice. Thanks to the many other people who have given support and advice, with particular thanks to Priscilla Alderson and Jo Campling. Also to Gordon, who has always provided enthusiastic encouragement! The doctoral research on which this book is based was supported by a fellowship from the Department of Health, and latterly, by South Thames Health Authority.
Chapter One
Introduction
Introduction
By exploring how young people live with asthma or diabetes, this book links a number of under researched areas. Firstly, it looks at how gender interacts with the management of chronic illness during adolescence, recognising that patterns of inequalities vary by gender at different stages of the life-course (Arber and Cooper 2000). With the possible exception of work on social class health inequalities which has tended to explore patterns amongst men (Popay and Groves 2000), the majority of research linking health disadvantage with gender has focused on women (Nathanson 1975; Arber 1990). However, more recent work indicates that hegemonic, or dominant masculinities can also place the health of men at risk, both in terms of being a risk factor in the aetiology of disease, and in the ways in which men manage illness (Cameron and Bemardes 1998). In order to illuminate the complex ways in which the social relations of gender operate, the importance of comparing the experiences of women and men has recently been emphasised (Annandale and Hunt 2000). For example, Verbrugge comments that: Wherever germane and possible, results should be obtained for men as well as women. Womens specialness (or nonspecialness, which can be just as informative) can be demonstrated only by gender comparisons (1997: 3). Similarly, Kathy Charmaz (1995: 287) states:
As the research in chronic illness grows, studying men and women comparatively in conjunction with marital, age, and social class statuses, in addition to the type of illness, can substantially refine sociological interpretations of the narratives of chronically ill people.
There is also a growing recognition that much of the academic literature has tended to universalise both the experiences and the constructions of masculinity and femininity, failing to recognise that there are various forms which may be dominant in different contexts (Lupton and Barclay 1997). It is argued that this tends to reify the dichotomy between masculinity/femininity and the reproduction of gender, and in recognition of the plural and often contradictory experiences women and men face, the terms femininities and masculinities are increasingly being used (Connell 1995; Mac an Ghaill 1996).
Secondly, it has been observed that children and young people have been neglected in both family research and illness research because of concerns about their competence and anxieties about the protection of children (Brannen and OBrien 1996). Brannen and OBrien (1996) also highlight the converse problem of underplaying parental perspectives and contexts. In relation to what she sees as the current prolonged parental responsibility for young people, Brannen states that, despite the importance policy makers place on parents as agents of socialisation and social control, there is virtually no support for them (1996:115). She links this to the failure of academic research to situate young people within families. Jones and Wallace (1992) also argue that the ambivalent attitude displayed towards young people may partly explain the lack of research on young people and their parents. By focusing on both young people and the role that parents, mainly mothers, play in helping their teenage children manage these conditions, the book aims to make a contribution to these neglected areas.
In medical research there is a growing recognition that to improve management, individual chronic illnesses should not be looked at in isolation, as similar strategies may be effective in treating many conditions (Davis et al. 2000). Similarly, in attempting to categorise chronic illnesses in a sociological way, Conrad makes a distinction between lived-with illnesses and other types of chronic illnesses, stating:
By lived-with illness I mean simply illness that a person must adapt to and learn to live with but which is (usually) not life-threatening . While these illnesses have different symptoms and manifestations, the problems that people must deal with and the strategies they develop may be quite similar (1987: 24).
For this reason, I chose to interview young people with two conditions, asthma and insulin dependent diabetes mellitus (IDDM) as they are both lived-with illnesses requiring high levels of self-management. They also have similar high levels of personal responsibility for juggling treatment (Bytheway and Furth 1996), enabling gendered notions of dependence, responsibility and care-giving to be explored. In addition, these two conditions highlight the difficult dilemma that parents of teenagers with a chronic condition can face, in that they are expected to balance the conflicting norms of being held ultimately responsible for care, with respecting the young persons autonomy and ability to manage (Silverman 1987b).
These two conditions also have a number of interesting contrasting features. Both asthma and diabetes have a specific treatment regimen, but there is arguably more leeway in the management of asthma, in that it may be possible to be more flexible with treatment in the short term at least. In contrast, ketoacidosis (high blood glucose levels) due to lack of insulin in diabetes can lead to coma and death within 2448 hours if untreated. With diabetes there is more emphasis on the prevention of long term complications such as blindness and renal failure. There are also epidemiological differences between diabetes and asthma. Amongst children, the prevalence of asthma is higher in males until the mid-teens when the sex ratio reverses, but the reasons for this are unclear (Gregg 1983; Strachan et al. 1994). In contrast, there is evidence of a slightly higher incidence of diabetes amongst males during adolescence. However, in terms of morbidity and control of both conditions it appears that adolescence is a critical time when control worsens, particularly for young women (Skobeloff et al. 1992; Pond et al. 1996). This fits in with the general trend of health during adolescence, when there is a gradual emergence of excess morbidity in females over this stage of the life-course. There is debate as to whether biochemical, hormonal or social factors or a combination of all three cause this reversal of childhood patterns in asthma and diabetes, which then continues throughout adult life.
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