Table 2 Characteristics of the three domains of life philosophy, relational and transcendent

1. Life philosophy

1.1. Theory of origins

Parents’ explanations of the reason of what caused their child’s illness

1.2. Sources of knowledge

Research process for sources of knowledge that can explain their child’s illness

1.3. Liminality

Feeling between the borders of knowledges, at the limits of the various available knowledges

1.4. Uncertainty

Not knowing what their child’s future will be

1.5. Ethical limits

Setting of ethical limits that guide their decision-making in regards to their child

1.6. Change in values

Reorganization of personal and family values as a result of caring for their child

1.7. Learnings

Incorporation of new ideas and principles into their philosophy of life because of their lived experiences

1.8. Meaning

Meaning-making process since the irruption of their child's illness

1.9. Normalcy

Awareness of being part of a minority, which escapes the criteria of normality

1.10. Images of death

Ideas and representations about what happens when someone dies (postmortem, afterlife)

2. Relational

2.1. Child description

Description of the personal and physical characteristics of one’s child

2.2. Social support

Help of friends, family, and/or its absence

2.3. Purpose of child’s life

Possible purpose of the life of their child

2.4. Child as a source of knowledge

How their child's reactions help parents know how to act, think, or make a decision

2.5. Others’ gaze

Thoughts and emotions generated by the gaze of others towards their child

2.6. Relationships with healthcare professionals

Relationships (good/bad) between professionals and parents

2.7. Parental role

Uniqueness of their motherhood and fatherhood

3. Transcendent

3.1. Role of faith

Effect that religious faith has had on their experience

3.2. Images of God

Conceptualization of divinity and vision of divine intervention in their particular life (and their absence)

3.3. Prayer

Orientation, content, characteristics and benefits of prayer

3.4. Hope

Confidence in the future

3.5. Own spirituality

Personal synthesis on transcendent aspects

3.6. Miracle

Explanation of a phenomenon from the viewpoint of a transcendent interpretative framework as a way of explaining that which cannot be explained from a rational viewpoint

3.7. Rituals

Religious or non-religious practices they have performed with/for their child

3.8. Religious metaphor

Expressions from sacred books used as an analogy of their personal situation and experiences