Changes in conceptions of meaning, effects and treatment of amblyopia. A phenomenographic analysis of interview data from parents of amblyopic children

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Abstract

The research reported is an experimental study on the effects of intensified education of parents of children with amblyopia on their understanding of the nature of the defect, its origins and treatment. Parents in the control group were exposed to the ordinary information provided at two departments of paediatric ophthalmology, whereas parents in the experimental group, attending the same clinics, were asked to read a booklet aiming at enhancing their understanding of amblyopia and its treatment. Experimental as well as control subjects were thereafter interviewed about their understanding of the meaning of amblyopia and amblyopia-related phenomena. Data were generated in single subject, semi-structured, in-depth interviews which were taped and transcribed in extenso. The interviews were analyzed according to the phenomenographic approach: i.e. the outcome is a description of the various conceptions that emerged in the interviews. In almost all cases the categories of meaning could be hierarchically ordered with regard to the level of understanding implied. Parallel to the interviews the subjects had also filled out a questionnaire assessing general and specific attitudes towards disease and treatment (the Health Belief Model, HBM). The results reveal a superior understanding among parents in the experimental group. The experimental group had also changed attitudes towards disease and treatment in a direction that would favour compliance, more than could be observed in the control group. The outcome is discussed in terms of the role of understanding for a compliant behaviour. It is also emphasised that health care personnel would profit from being aware of the nature of common misconceptions of diseases and their treatment, in the sense that they would be better prepared for entering instructional dialogues with patients or, as in this case, other persons responsible for the management of prescriptions provided.

Introduction

It is known that on average one third of all patients do not comply with prescribed treatment, regardless of type of illness and treatment 1, 2. For some minor complaints, non-compliance might be of no significance to the patients' health, but for grave illnesses it might lead to serious and permanent damage. The consequences of non-compliant behaviour are, however, not limited to the individual patient, because a non-compliant patient may, by not getting better at the pace that would have been possible, put a burden on the health care system, on the production due to illness. Earlier research shows that it is not possible to predict from background characteristics such as age, sex, marital status, education, profession, socio-economic level, religion or race, which patients will be compliant or non-compliant [3]. On the other hand, there are indications that if the patient has understood the aims and effects of the treatment, the degree of compliance will increase [4]. A problem in all compliance research is that it has been difficult to establish precise criteria for measuring compliance [5]. Direct methods such as studying the serum level of drugs and indirect methods such as therapeutic results, patients' self reports and pill counting have often appeared to be unreliable.

The choice of the disease for this study was mainly made on methodological premises, i.e. it could be claimed that children with amblyopia due to, for example, strabismus, form an ideal group from a compliance perspective since there is a well known correlation between a compliant patient behaviour and a positive development of visual acuity. On the other hand non-compliant behaviour will result in absence of progress—or even deterioration—of visual acuity.

One group of investigations within the compliance domain has focused on patients' knowledge. These studies have generally been fairly straightforward, i.e. conventional tests of factual knowledge, mostly designed as paper and pen tests. The outcome of such studies has been rather discouraging in the sense that patients seem to retain only marginal quantities of knowledge provided in the health care system 6, 7.

Since about a decade studies have been performed that apply qualitative approaches to the area of measuring patients' knowledge and compliance [8]. Scherman-Hansson and Lindholm [9]in their study of patients suffering from asthma bronchialae, found that only a minority of the subjects had understood the differences between medication in the acute phase of the disease and maintenance treatment. Fallsberg [10]interviewed 90 patients suffering from either asthma, hypertension or chronic pain. She found that about half of the patients were non-compliant with respect to the drugs prescribed, partly as a result of their own considerations within a complex of symptoms of the disease and experienced or anticipated side effects, but also due to an obvious lack of understanding of their disease and the effects of the medication. How important it is that the patients' understand their disease, its origin, symptoms and development as well as its treatment has been demonstrated by Reichard et al. [4]in an experimental study among diabetics. The patients in the experimental group took part in a series of intense instructional sessions aimed at enhancing their understanding of diabetes and its treatment. The instructions were based on a previous analysis of the diabetics' conceptions of the disease and related phenomena. The effects of instruction, evaluated by clinical measures such as the level of HbA1C (which is a retrospective evaluation of the effectiveness of the treatment during the final weeks), were impressive when compared with the control group, which had been exposed to the conventional information provided at the clinic. The study by Reichhard et al. [4]is in many respects similar to the present study in the sense that it is an experimental study and that it involves an instructional intervention in addition to the conventional medical treatment. The aims of the study to be reported here is to (a) see if a qualitative analysis can be applied to the description of how parents of amblyopic children conceive of refractive errors and other amblyopia-related phenomena, and (b) to evaluate if an instructional tool based on these descriptions and some previous research on meaningful learning can affect the understanding of the disease and attitudes concerning the disease and have an effect on compliance.

Section snippets

Amblyopia and strabismus: Some basic concepts

It was decided, as has been stated above, to restrict the study to an illness where there is a clear connection between compliance with the prescriptions and improvement of the illness. At the same time non-compliance should result in an unchanged or deteriorated state of illness. Amblyopia in children is such a disease. There is a clear and measurable connection between a well accomplished treatment and observed clinical effect, i.e. improved visual acuity. About 3–4% of all pre-school

Materials and methods

The study was performed on a total of 119 parents of children with amblyopia due to strabismus and/or refractive errors. The group represented a consecutive material of patients attending either of two departments of paediatric ophthalmology in Stockholm. The reason for not using a random assignment rests with the assumption that it was difficult for the nursery staff after training to treat the control group and experimental group differently. The overall design of the study is illustrated by

Refractive error

The first domain to be dealt with is the meaning of refractive errors. This is a general question and does not pertain to any particular kind of refractive error. Five different conceptions can be discerned: (A) The light is refracted in front of or behind the retina. (B) The light is spread too much or too little. (C) The light turns around/is reflected/too far behind or in front of the retina. (D) One has difficulties in seeing at far distance or close up. (E) Refraction defects depend on

Group comparisons

Below the experimental and the control group are compared as to their distribution over the different categories. Generally, it has been possible to order the categories of outcome to a question hierarchically, i.e. answers belonging to an A category reveal a deeper insight into the phenomenon in question than do B answers, etc. The level of insight is thus defined in terms of the degree of concordance with the meaning conveyed by the information provided by the health care personnel. In most

Parent's knowledge about amblyopia

An additional statistical test was used to test the correlation between the parents level of knowledge and change of visual acuity of the child. The rank of the level of knowledge was determined for each patient among those with a registered value of change of visual acuity. The correlation between the rank and the change calculated as a percentage was tested by Pitman's test [19]. Two-tailed test was used. Change in visual acuity is expressed as percentage of change in visual acuity during a

Conclusions

The qualitative analysis of the participating parents' conceptions of amblyopia, strabismus and refractive errors reveals a substantial variation. This outcome is well in accordance with the results of previous research. Several investigations have demonstrated that humans vary with regard to how they conceive of phenomena in the surrounding world 9, 10, 21, 22. The aim of the present study was to apply qualitative analysis as a means of evaluating the effects of an intensified education of

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