Original Article

Development and Validation of Psychological Adaptation Tool (PAT) for Children with Chronic Illness

Introduction

The concept of adaptation is omnipresent in psychology.¹Adaptation is described as the ability to accept and respond to changes in the internal and external environment with the right attitude and behaviour.²

Piaget defined adaptation as a process through which children modify their actions, ideas, or plans in response to environmental changes in order to reach a condition of cognitive equilibrium.³ A chronic illness or medical condition is a health issue that impacts a child’s daily activities, lasts three months or more, and necessitates repeated hospitalisations, home health care, and/or intensive medical attention.⁴ In general, chronic diseases have at least three key characteristics: They are rarely fully curable, have a long duration, and do not resolve spontaneously.⁵

Psychological adaptation is a functional change in response to environmental stimuli, in terms of sensory functioning, behavior, cognition, or emotions.^1,6-8 The theory of cognitive adaptation is based on the assumption that people possess unrealistically positive views of themselves to enhance their well-being.^9,10

The emotional reaction to the diagnosis of a chronic illness can be a greater challenge than coping with the physical manifestations of the illness.^11-14Children use various strategies to cope with the psychological stressors associated with chronic illness.¹⁵

Hospitalization is considered as most unfamiliar environment for children. Children experience psychosocial problems as a result of short and long-term impact of hospitalization.^16,17 Children undergo a variety of unpleasant situations in addition to varied physical environments, such as painful procedures and the adverse effects of chemotherapy.¹⁸

The need of the study is that we hope to provide academic and practical researchers with a tool that allows them to explore new aspects of children’s well-being and improve their coping abilities, and, consequently, their health status. Children’s psychological adaptation is an area of study that’s yet to be explored. Measuring children’s psychological adaptation is an important endeavour, knowing the adaptation levels of the children can guide treatment, care, education, and counselling planning for optimum growth and development during their chronic illness period.^19,20On other hand, parents were chosen as the instrument completers due to the uncooperativeness of the children with the defined age group. Therefore, the aim of this study was to development and validation of psychological adaptation tool (PAT) for children with chronic illness.

Material and Methods

An exploratory mixed method design was used to conduct the study. The PAT was developed in three phases. Figure 1 shows the schematic representation of the research.

Phase 1: Item Development Phase

This phase has two steps

1. Identification of Domain

Extensive Review of Literature

For the identification of domains, an extensive review of literature was carried out in order to explore the psychological adaptation of children with chronic illness. The review had been conducted from various journals, articles and other previous studies using the electronic databases PubMed, MEDLINE, CINHAL, Cochrane Library and Google Scholar. The areas focused in this review were related to the psychological adaptation children undergo who is suffering from chronic illness. The BOOLEAN operators, AND/OR was used for review, using the following:

Psychological adaptation AND Children

Psychological adaptation AND Chronic illness

Psychological adaptation AND Chronic illness AND children

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Figure 1.

Systematic representation of research methodology

Figure 1.

Systematic representation of research methodology

Focused Group Discussion (FGD)

In order to develop the items, focused group discussion (unstructured) was conducted among two groups. One group consisted of 6 Pediatric doctors and 8 pediatric nurses working in pediatric medicine unit at AIIMS (All India Institute of Medical Sciences), Jodhpur and the other consisted of 10 parents whose children were suffering from chronic illness. Both FGDs were of about 30-35 minutes duration and the responses were noted.

The components of psychological adaptation of children with chronic illness obtained from the FGDs commonly included cognitive component which included about attention, learning, memory and concentration of the child. Other components included self-efficacy which included interaction of the child or relationship with others as a component of psychological adaptation to chronic illness in children. Participants also highlighted different coping mechanism usually used by the children.

2. Item Pool Generation

An item pool was generated which consisted of 4 domains, 14 subdomain and 29 items, generated based on the content that were identified through deductive and inductive methods via literature reviews and FGDs respectively. The items generated from literature review and FGDs were summarised domain wise in following manner in Table 1.

Phase 2: Tool Development

1.Selection of measurement scale

After the generation of the item pool list of opposite adjectives pairs in accordance with the statement were selected and a 5-point semantic differential tool was prepared based on which the participants selected the response that best represent the direction and intensity of their judgement about the adaptation of their child in last 6 months.

2. Expert Review of Initial Item Pool

The review of initial pool of items was done by the expert panel through the modified Delphi process. Two rounds of modified Delphi were conducted.

Stages of Delphi

Different stages are followed in the Delphi process:

Identification and Selection of Experts

The proper accomplishment of Delphi process depends mainly on the expert panel. Therefore, careful selection of experts should be made.

The Delphi panel for the present study consisted of 15 experts out of which 6 were from the field of paediatric nursing, 2 from the Department of Clinical and Child Psychology, and 7 from the Department of Psychiatry.

Sending Invitation to the Experts

The initial contact with the selected experts was made through mail in which a request letter was sent inviting them for the Delphi method along with the study title. Request letter was sent to 30 experts out of whom 21 had given the consent for participation. For those experts within the Institute, the correspondence was obtained through personal contact.

First Delphi Round

Once the confirmation mail was obtained, another email was sent to the experts consisting of the brief study methodology, preliminary draft of the tool and the evaluation criteria for validation of the tool, notifying them regarding the return of their suggestions to the same email id. Out of 21 experts to whom the draft was sent, 15 experts completed the first round. The first round was completed in three weeks.

Analysis of First Delphi Round Results

Once the response was obtained, the interpretation of the first round was done. The major areas of suggestion included merging of sub-domains, renaming of some domains and rephrasing of the sentences. The item related to thought (cognitive domain), global functioning (self-efficacy), repression and regression (defence mechanism) were considered irrelevant. Renaming of the domain defence mechanism as coping strategies was also suggested. Out of initial 11 items 8 items were considered as highly relevant by all validators and 3 needed modifications. Also, out of 29 items, 7 items were considered highly significant, 5 items were rephrased, 9 were merged and 8 were considered as irrelevant by the majority of validators and therefore removed.

After interpretation of expert’s suggestion from first Delphi round, first modification was made in the initial draft of tool with 29 items. Items were reviewed and revised. Further, the revised items were rearranged by assigning them to appropriate categories. The revision of initial draft was made in manner as given in Table 2.

Second Delphi Round

Invitation for the second round was sent to only those who completed the first round and feedback of first round was also sent along with the modified tool. Out of 15 experts to whom the feedback of first round was sent, 9 completed the second round. It took 2 weeks to complete the second round.

Analysis of Delphi Round Second Results

After obtaining the responses from the validators, interpretation of second round was done. There were no suggestions for section A. for section B suggestions regarding removal of items 2, 8, 15, 17, 18, 19, 21 and 26 from initial draft were accepted by validators along with merging of items. Final 16 item tool with opposite adjective pairs after Delphi modification (Table 2).

Revision and Inclusion of Items

After the expert’s review of initial item pool, the tool consists of 4 domains (cognitive, conative, self-efficacy and coping strategies) with 10 subdomains (Attention, Learning, Memory, Concentration, Interaction, Denial, Isolation, Temper tantrums, Distortion, Fantasy) and 16 items. The S-CVI/ Ave and S- CVI/UA were 0.96 and 0.87 respectively. This shows good content validity.

Phase 3: Tool Evaluation

Administration of the Items to the Subjects

The final modified draft of tool consisting of 16 items that were evolved through literature review, content validation by experts, and the study was then administered to 160 parents of children with chronic illness in the study setting at AIIMS, Jodhpur, in order to test the validity and reliability. Researcher has taken the ethical approval for the current study from the institutional ethical committee. The process of data collection explained to the subjects (parents) and a written informed consent obtained from them. Confidentiality regarding the data was assured so as to get cooperation throughout the procedure of data collection. Data were collected using PAT in Hindi language and only from those who fulfil the inclusion criteria. Parents were asked to fill the 5point semantic differential tool of PAT, ranging from 1-5, with their responses between two opposite adjective pairs. The method of administration was pen and paper method. Confidentiality and anonymity of the responses maintained throughout the study.

For Reliability analysis of the PAT Cronbach alpha was calculated, to find out the internal consistency of the tool.

Exploratory factor analysis was done to find out construct validity. Principal component matrix was used to normalize the sets of data. The appropriateness of PAT was checked by Kaiser–Meyer–Olkin (KMO) test and the Bartlett test of sphericity by using Statistical Package for the Social Sciences (SPSS, version 22).

Results

Evaluation of the Items

Reliability Analysis for the PAT

The Cronbach alpha was calculated to find out the internal consistency of the tool. The Cronbach alpha value was 0.814 for the entire 16 items, which was found to be good.

Since the value of Cronbach’s alpha of scale increase on deletion of item 6, this item can be removed from the tool, but after discussing with the experts and considering the importance of the item it was decided to retain it.

Construct Validity Analysis for the PAT

The KMO value of the PAT was 0.886 and Bartlett’s test of sphericity shows P value of < 0.001 with a χ² value of 586.418, which was significant. These values show the adequacy of the sample for factor analysis.

To find out the extraction communality of each item of the tool, principal component analysis method was instituted. The initial communality of each item was assured to be 1 (100%). For the PAT, extraction communality of the item was in between 0.322-0.670 (Table 3). Hence, this data was appropriate for factor analysis.

Table 4 shows total variance of the item extracted through principal component analysis. Factor extraction condenses the item into smaller number of items and is used to identify the number of underlying dimensions. Principal component analysis method was used for the extraction of factors for PAT. Principal component analysis had generated 4 factors (cognitive, conative, self-efficacy and coping strategies). The Eigen value of all the 4 factors was above 1.00. Here the principal component analysis had showed the first four factors account for 51.0% of the total variance.

Figure 2 illustrates the scree plot for the four-factor structure for the PAT. Since there is considerable discontinuity after 4^th component with Eigen value of less than 1.00, four factors could be extracted.

Table 5 depicts the Rotated Component Matrix of PAT through varimax rotation. Once the factors were extracted through principal component analysis was done with Varimax with Kaiser Normalization.

The first factor had an initial acceptable loading of 7 items (Item- 1, 5, 10, 12, 13, 14, 15) (range, 0.474-0.690) accounted for 30.34% of variance with Eigenvalue of 4.85. The second factor evidenced loading of 4 items out of which 3 were retained (Item- 2, 3, 4) (range, 0.419-0.806) and accounted for 7.60 % of variance with Eigenvalue of 1.21. The third factor was loaded with 3 items (Item 7, 9, 16) (range, 0.475-0.722) and accounted for 6.78% of variance and Eigenvalue of 1.086. The fourth factor evidenced acceptable loading from 3 items (Item-6, 8, 11) (range-0.533-0.631) and accounted for 6.26% of variance with an Eigenvalue of 1.00.

A factor loading of 0.4 was considered as the criteria for acceptable loading.²¹ Also the items were retained within the factor in which they had higher factor loading.^22,23 The four factors were cognitive, conative, self-efficacy and coping strategies.

Scoring Of Psychological Adaption Tool

The scoring of the tool was divided into five parts with score of 16 being not at all adaptable, score of > 16-32 being a little bit adaptable, > 32-48 somewhat adaptable, > 48-64 as quite a bit adaptable and > 64 as very much adaptable.

Discussion

In this study to assess the psychological adaptation of children with chronic illness a 16-item, 5-point semantic differential tool was prepared. Through literature review it was evidenced that the previously developed adaptation tool are all Likert type.²⁴ The reason behind selecting the semantic differential scale was that it tends to produce more accurate results than Likert scale and offer the participant a bipolar adjective pair which makes it easy to respond.²⁵ The PAT developed in three phases: item development, tool development and tool evaluation through seven steps. Similar methodology was used in other studies from the literature.^26,27 The final items were compiled by reviewing the literature, conducting semi-structured interviews and Delphi process.

The study unequivocally emphasizes the significance of assessing psychological adaptation in children with chronic illnesses, which is consistent with previous study finding regarding the importance of assessing psychological adaptation.^15,24 Additionally, the study discusses the need of taking into account the psychological component, which is more frequently disregarded, in children who are living with chronic disease and also the lack of tools for assessing psychological adaptation in paediatric population.

Four domains were identified to measure the psychological adaptation with PAT those were cognitive, conative, self-efficacy and coping strategies. Studies looking at illness-related coping methods also showed that children with chronic illnesses used cognitive adaption techniques more frequently.²⁸

Although the PAT represents an important methodological advance in the area of children’s psychological adaptation, its limitations must be recognized. First, research findings cannot be generalized as only single setting was selected for conducting the study also age group of the study subject was school age i.e., 6 to 12 years and thus not applicable to all paediatric age groups.

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Figure 2.

Scree plot for the four-factor structure for the PAT

Figure 2.

Scree plot for the four-factor structure for the PAT

Conclusion

In conclusion, result of this study has shown that PAT is a feasible, highly reliable and valid tool to measure the psychological adaptation in children with chronic illness and thus can be used to assess the psychological adaptation level. It accords towards the need for further more research into the measurement of the psychological adaptation since it is an important aspect to consider in children who are suffering from the chronic illness. Therefore, by paying attention to the psychological adaptation level doctors and nurses can provide high quality paediatric health care services for children.

Competing Interests

There is no conflict of interest in the study.

Data Availability Statement

The data supporting the findings of this study are available from the corresponding author upon reasonable request.

Ethical Approval

Ethical clearance was obtained from the institutional ethical committee of the with reference number: AIIMS/IEC/2022/4061. Informed written consent was taken from the study subjects after giving proper explanation of the purpose of the study. Confidentiality and anonymity of the subjects and the data collected were maintained throughout the study.

Research Highlights

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