Table 3 Analysis process

Parents

A picture of the playground outside the family’s house

The family went to the playground to get a sense of normal life in a strained situation (Family 3).

“Essentially, it’s about living a normal life. Quality of life comes when we can engage in ordinary activities” (Father, Family 4).

Time

Body

Living a normal life

Ill child

A toy skeleton of a human being that hung in the child’s room

The parents emphasized the toys’ significance in bringing joy to their child in various situations (Family 1).

“To me, quality of life means that Monica enjoys the best possible life. A good day for Monica is when she is free from pain and seizures. You can see the joy on her face, perhaps you even see a smile. Our ongoing goal is to ensure that she has pleasant days, getting to experience things and simply be a child at her age” (Father, Family 9).

Time

Relation

Giving my child a good life

Siblings

A picture of the ill child and the sibling at the zoo

Parents described the importance of doing things and letting the siblings have experiences while still being a child (Family 5).

“On the day he passes away, we don’t want his siblings to feel like their lives have been put on hold. It burdens us when they cannot engage in activities because we are unable to accompany them due to our focus on Morten” (Mother, Family 2).

Time

Relation

Fulfilling siblings’ needs

System

Not addressed in this round of the analysis.

“You feel a profound sense of powerlessness. Because it doesn’t matter what you say or what you deliver in documentation of his needs. And it doesn’t even help what the physician in the specialist health service writes. You are told, indirectly, that you must pull yourself together. They have such enormous power. To decide our quality of life” (Mother, Family 6).

Relation

Body

Feeling heard and respected by the health and social care system