Table 2 Summary of studies included in the review

S1

Admi (2007) [41]

Israel

To determine the importance of epilepsy in the lives of the participants, to examine their view of others’ perceptions of people with epilepsy, to analyze their ways of managing disease-related information, and to analyze their ways of managing medical regimens

Qualitative interview study

Analyzing medical records

Adolescents and young adults with epilepsy (15–24), n = 14

S2

Allen (1984) [24]

USA

To assess the concerns of children with insulin-dependent diabetes mellitus and how the concerns relate to their understanding of diabetes

Qualitative interview study

Coding the response levels was based on the general progression from preoperational to formal operational thinking

Children with insulin-dependent diabetes mellites, type 1 (8–17), n = 34

S3

Bernardo (1982) [25]

USA

To integrate models of adaptation to disability and knowledge about children’s cognitive development using Piagetian theory of cognitive development and Crate’s stages of adaptation to chronic illness

Unclear.

Unclear

S4

Brewster (1982) [26]

USA

To investigate the relationship between cognitive development and children’s understanding of the cause of illness, intent of medical procedures, and role of the medical staff

Cross-sectional developmental design

Standardized cognitive tasks based on Piaget’s developmental theory

Results were scored in ascending order of cognitive maturation

Chronically ill hospitalized children (5–12), n = 50

S5

Brown (1982) [27]

USA

The author spells out the main struggles adolescents face due to their chronic illness. And gives recommendations by age group (10–14, 15–18 years old) for loved ones and caregivers on how to support the child

Unclear. Involves 1 case study

Unclear

S6

Cantrell (2013)[28]

USA

To develop a framework based on Piaget’s cognitive development theory that considers the developmental progression of illness understanding and allows reintegration of concepts

Unclear.

Unclear

S7

Clunies-Ross (1988) [38]

UK

To report on the concepts of death in children with leukemia (ideas about the causes of illness)

Qualitative interview study

Analyzing children’s drawings using the Kinetic Family Drawing Revised Scale (KFD-R)

Children with leukemia (4–9), n = 21

S8

Gibson (2010) [45]

UK

To explore children’s and young people’s views of cancer care and to present a conceptual model of communication and information sharing

Cross-sectional developmental design

Three techniques were employed to offer a range of activities drawing on play and participation based on approaches:

Play and puppets (4–5)

Draw and write technique (6–12)

Activities day and interviews (13–19)

Children and adolescents with cancer at different disease stages (4–5, 6–12, 13–19), n = 38

S9

Hinds (1997) [29]

USA

To challenge and refine existing theories of adolescent development and to contribute to the revision of current theories (Freud; Piaget; Erikson; Sullivan; Fowler; Bronfenbrenner) to better account for the unique conditions and experiences of adolescents dealings with serious health challenges

Unclear. It is an editorial. Describes two cases

Unclear

S10

Hinds (2005) [63]

USA

To identify the preferences of children and adolescents with advanced cancer about their end-of life care and the factors that influenced their decisions

Qualitative interview study

A descriptive decision-theoretic decision analysis model was used to analyze the data

Pediatric patients with advanced cancer (10–20), n = 20

S11

Kozlowska (2011) [44]

AUS

To describe an individual intervention– one component of a multimodal treatment program– to help children find skills for pain management

Unclear. this is an underpinning of their intervention

Unclear. Not clear what number of examples they tested the intervention on.

S12

Campbell (1975) [39]

USA

To study development of concepts of illness, to provide information on how children’s views of illness evolve and change over time

Mixed-methods design

Including semi-structured interviews children and mothers and

questionnaires filled in by mothers

Children that were short-term patients in a pediatric hospital (6–12), n = 264, and their mothers

S13

Carandang (1978) [36]

USA

To evaluate illness conceptualizations by children at different stages of cognitive development and to evaluate the role of sibling illness on conceptualizations about illness

Mixed-methods design

Including interviews and Piagetian tasks of physical conservation

Children with a healthy sibling (6.5–15) n = 36, or a chronically ill sibling with diabetes (6.5–15) n = 36, and their mothers

S14

Claflin (1991) [37">]

USA

To examine how information disclosure related to the child’s age and whether disclosure mediates the socioemotional distress of the illness as assumed in the protective approach

Qualitative interview study

Including interviews with children and

group interviews family

Children with cancer (< 9, 9–14, 14> ) n = 43, and their families

S15

Kury (1995) [42]

USA

To evaluate whether previous medical experience is associated with more sophisticated conceptions of illness causality among chronically ill children

Mixed-methods design

Including semi-structured interviews and intelligence subtests

Chronically ill children (4–16), n = 64

S16

Mouratidi (2016) [30]

GR

To explore possible age differences in children’s (subjective) perceptions of illness and health and to what extent these differ from adults’ perceptions

Thematic content analysis design with a drawing-based method

Children from nursery and primary schools (5–11) n = 347, and adults (µ 20.6), n = 114

S17

Neul (2003) [31]

USA

To explore whether cognitive development level and chronological age were related to sickle-cell disease (SCD) knowledge and pain conceptualization in young children with SCD

Mixed-methods design

Including a multiple-choice questionnaire, sentence completion tasks and

Piagetian conservation tasks

Children with SCD (6–13), n = 44

S18

Poltorak (2006) [32]

USA

To explore how children’s understanding of death develops through various cognitive and developmental stages. The study seeks to integrate insights from both cognitive developmental and psychoanalytic perspectives to provide a comprehensive framework that can help clinicians, caregivers, and parents approach the topic of death in a developmentally informed manner

Unclear.

Unclear

S19

Schmidt (2003) [43]

DE

To delineate major issues involved in the study of coping with chronic conditions in childhood. The article lists and specifically discusses currently existing tests to ascertain coping strategies in children with chronic conditions

Unclear. More like a critical reading to find a connection between coping and development in literature.

Unclear

S20

Sezgin (2020) [46]

USA

To understand the life journey (to independence) of adolescents with chronic diseases and their caregivers. This study proposed a new perspective to the life journey, transition stages, and personal archetypes from a patient centered approach

Qualitative design including face-to-face interviews complemented with visual materials

Chronically ill adolescents (13–18), n = 13, and one of their caregivers

S21

Sigelman (1993) [33]

USA

To trace developmental changes in the content and organization of knowledge (theoretical perspective). To emphasize that it is useful to shift from a Piagetian perspective, with its emphasis on the complexity of thinking about disease, to theoretical perspectives that focus on developmental changes in the content and organization of knowledge

Cross-sectional descriptive survey design

152 Middle-class children (µ9, µ11, µ13), n = 152, and psychologists’ college students (µ19), n = 58

S22

Thies (1999) [34]

USA

To test the hypothesis ‘cognitive appraisal of stress changes with cognitive development’

Mixed-methods design including structured interviews by the Stress Appraisal Protocol, rating emotions on Likert scale and

the Piagetian task of causal reasoning

Chronically ill children (8–9, 11–12, 14–16), n = 79

S23

Werner- Lin (2018) [35]

USA

To offer recommendations for parental disclosure of genetic risk to children, case examples with critical discussion of relevant topics, common child questions with sample scripted responses, and additional printed and online resources. Recommendations are based on well-established theories of child development, empirical research on family communication of hereditary cancer risk, and clinical counseling experience

Unclear. More like a critical reading of well-established theories of child development and a how-to to disclosure genetic risk to children.

Unclear

S24

Yeh (2001) [40]

TW

To establish a conceptual framework for the adaptation process of Taiwanese children with cancer. Comparison with Roy’s adaptation theory is discussed.

Mixed-methods design including in-depth interviews, observations, medical chart review and

researchers’ reflective journals review

Pediatric cancer patients with different illness trajectories (µ11.4), n = 34, and their caregivers