Table 2 Identified supportive and distressing factors

Supporting factors

 • Experiencing continuity and stability as a precondition for maintaining a balance while “navigating unknown waters” [4].

 • Adopting an active attitude towards challenging and continuously changing situations [4, 22]

 • Being able to redefine normality in one’s life situation, thereby creating new possibilities of well-being in the context of an incurable illness [4].

 • Acknowledging the present situation and being satisfied with it [22, 27]

 • Being able to keep hope alive [27, 29]

 • Experiencing family cohesion and support [21, 23, 26]

 • Using openness and honesty in communication to handle the situation and support each other [21, 26, 30]

 • Relying on positive memories of the past as a basis for accepting the present situation [4, 23]

 • Receiving support by professionals [20, 25, 28,29,30]

 • Using magical thinking and memories of the past [23]

Distressing factors

 • Experiencing disruption and instability [21] as a reason of losing one’s balance while “navigating unknown waters” [4]

 • Not being able to adopt an active attitude [22].

 • Not being able to redefine one’s life situation in the context of an incurable illness [4].

 • Being exposed to distress, anxiety and uncertainty leads to a feeling of losing control because of not knowing what to expect [4, 21].

 • Vulnerability of the sick persons influence the family members’ lives and was on their mind [22]

 • Experiencing fears about the future [22].

 • Losing hope [27, 29]

 • Experiencing a lack of family cohesion and support [21]

 • Missing authentic communication [21, 26]

 • Missing support by professionals and experiencing difficulties with the health care system [25, 31]