Parents’ information needs about the treatment of their chronically ill child: A qualitative study

Abstract

Effective information provision is a prerequisite for partnership between child patients, their parents and health professionals.

Objectives

To explore the complexity of parents’ information needs and how current information provision is evaluated.

Methods

Qualitative methodology using semi-structured interviews with 27 parents of 20 families with a chronically ill child, recruited at the paediatric department of a British district general hospital.

Results

The need for information varied greatly between individuals and over time, and commonly involved diagnosis, management plan and prognosis. However, most parents in this study experienced professional communication and information provision to be inadequate. Information provision appeared to be related to the diagnosis, the level of secondary care involvement and the extent to which parents were required to take responsibility for daily management of the child's condition. Parents’ complex and shifting evaluations and responses point to the double-edged nature of information. Some parents actively sought out information, but resisting information, for fear of its potentially negative impact, was also noted to be a coping strategy.

Conclusion

Parents of chronically ill children presented with a great variety of information needs, which was not always appreciated by healthcare professionals.

Practice implications

This study highlights the need for good communication based on professional awareness of how parents understand and experience their child's illness, as well as the importance of sensitively individualising information provision to parents’ needs so as to address their requirements but not to unnecessarily increase their anxiety or insecurity.

Introduction

The development of patient-centred medicine responsive to the needs and preferences of health service users is at the forefront of UK government health policy [1], [2], [3]. Partnership between patients and health professionals is widely advocated as a means of improving the quality of health care and treatment outcomes. It also accords with the ideological commitment to personal autonomy and informed consent, which are integral components of the modern conception of citizenship. The provision of accurate and comprehensive information is now widely regarded as both an individual entitlement and a prerequisite for a genuine partnership between patients and health professionals. In spite of the proliferation and widespread dissemination of information materials in recent years, patient dissatisfaction, especially concerning the direct communication of information in clinical encounters, has been frequently reported. Most attention has focused on the individual dyad of patient and professional. However, the dynamics of interaction become increasingly complex when a third party is involved, as in paediatric settings, where the parent usually takes the lead as intermediary between the child patient and the professional. Gabe et al. [4] point out that the assumption that partnership is universally desirable and equally applicable, or even feasible, throughout all clinical settings is not yet underpinned by empirical findings. Rights and obligations relating to children as patients are not clearly worked out, despite a move to formal recognition of the child's entitlement to information and involvement in decisions regarding treatment and care [3], [4]. Evidence suggests that patients are often dissatisfied with the amount, quality and consistency of information about their condition and treatment provided to them by professionals [5], [6], [7]. However, the variable and complex effects of information have also been demonstrated by studies, which have found that information provision and shared decision-making beyond the patient's needs and preferences may increase mental strain and anxiety and reduce confidence [8], [9], [10]. Although good information is necessary as a basis for patient and parent decisions, provision must be sensitively tailored to parents’ individual requirements. However, the practical difficulties involved in achieving this are considerable, given the variable and changing responses of individual patients in different clinical settings [11], [12], [13], [14]. These difficulties are particularly challenging in complex interactions involving a triad of parent, child and professional [4]. Effective professional tailoring of information to patients’ felt and changing needs depends on a clear and sensitive understanding of their knowledge and concerns relating to the illness and its treatment over time. However, several studies have reported that health professionals often remain unaware of patients’ treatment preferences and consistently underestimate both their information needs and desire for involvement in medical consultations [12], [14], [15].

This paper presents findings from an exploratory qualitative study investigating the complexity of parents’ information needs with respect to their child's chronic illness and prescribed medication, and how they felt these were addressed by health professionals providing care. The present focus is on the nature and development of parents’ need for information over time, their reasons for wanting information and their assessment of the adequacy of information provided by health professionals.