Table 2 Main hope dimensions and hope evidence in parental experience of perinatal and neonatal palliative care

Cognitive

Sense of control, identity, normality and validation for themselves and their baby (S1) [12]

Parents hope that the diagnosis could be wrong or hope that it is not as bad as predicted (S5) [13]

Information is vital (S12) [14]; (S20) [15]; (S22) [16]; (S23) [17]. To obtain information using Internet was distressing (S12) [14]; (S23) [17]

Parents to express their goals, fears, hope help them do stablish decisions (S15) [18]; (S17) [19]; S20 [15] and emotions (S27) [20]

Parents hope after the diagnosis is designed for: meet their child alive, spend some time as a family, bring their child home, and give their child a good life. Parents wanted to give them a chance (S18) [21]

Describe the process as a life transformation, in which the need for hope, honesty in prognosis, compassion and facilitation of connection (S19) [22]

The mothers need make plans for the birth of their baby, and to cope later in the Neonatal Intensive Care Unit (S21) [23]

Finding meaning is one of the first step for parents to begin to reorganize their lives (S25) [24]

Parents avoid being given false hope. False hope is about information too optimistic given to make parents feel better. (S20) [15]

Affective

Parents belief that the child is alive, a chance for him to fight could be given, and miracles could occur (S2) [25]; (S7) [26]; (S10) [27]; (S15) [18]; (S23) [17]; (S24) [28]; (S27) [20]

Parents` decisions about continuing or interrupting the pregnancy is linked to their beliefs, and meaning gave to child existence (S3) [29]; (S6) [30]; (S8) [27]; (S17) [19]

Parents share a theme of discerning what makes for a valued life, highlighting their quality-of-life considerations for the unborn child and existing family members (S5) [13]; (S11) [31]

This perception of themselves as a mother and the bond with their baby remained (S6) [30]

Families rely on their faith and spirituality in times of crisis to help them make sense of the path to the end of life (S8 [32]; S20 [15])

Parents often have an intrinsic need to feel that they have “done the best that they could” for their child (S9) [33]

The couple’s decision was to normalize and celebrate the pregnancy and the child life (S20) [15]; (S26) [34]

They want counseling without judgment, with attention to continuity of treatment and a hopeful approach that recognizes the uncertainty of prognosis (S26) [34]

The transformations of life involve changes of perspectives, acceptance of uncertainty e lack of control, advances in gratitude, humility, valuing emotions e feelings and forgiveness. (S19) [22] They value connections, belief, and possibilities of rewriting stories. They became more compassionate and hopeful as people and providers. (S19) [22]

Temporal

The parents struggled through the situation as a couple and envisioned what the future would bring (S2) [25]

Memorabilia and clinical milestones in their pregnancies validated these maternal identities (S6) [30]

All mothers learned to focus on living in the present (S12) [14]

When a life-limiting diagnosis is made, the remainder of the pregnancy and time afterward are vastly different than what was anticipated and hoped for (S13) [35]

Decision to enjoy the pregnancy despite limit time of the time life of their baby (S16) [36]

Affiliative

Connectedness to others (children, family, friends and other parents) played a part in parents’ resilience and emotional wellbeing (S1) [12] (S26) [34] Sharing this decision with their family and social network helped them hope. (S20) [15] (S23) [17] Contacting experience of parents in similar situations was helpful (S20) [15]

When pregnancy became obvious mothers felt difficulties with social relations but engaged with mothers who had a similar experience. (S12) [14]

To attach with the child during his existence is hopeful, as well as being invited to think about willing to establish memories. (S3) [29] Fetal movement helped a woman to replace sadness and to feel more affection for the child. (S26) [34]

To invest in the relation with the survival twin helped parents to hope and suffer less. (S16) [36]

Fathers often kept their emotions under control for fear of further upsetting the mother but were also unsure how to support their partners. (S27) [20]

Spirituality and religion assisted their progression and feelings of hope for their future without their child. (S1) [12] and helped them to make sense of the situation. (S4) [37]

Parents need collaborative discussions with specialists to make their decisions. (S10) [27]

Feeling part of the team and being able to discuss things openly with them helped to make decisions. (S2) [25]; (S20) [15]; (S23) [17]. Feeling freely included and involved was experienced in a positive way (S21) [23], balancing autonomy and parental authority with medical recommendations and prognosis. (S11) [31]; (S24) [28]

Feeling that professionals are compassed, available, honest and empathic contributes to making decisions and to hope and comfort (S3) [29]; (S8) [32]; (S14) [38]; S22 [16] To feel involved, have a parental role, and have their wishes respected (S13) [35]. In the other hand, lack of sensitive attunement from the providers intensified the trauma. (S12) [14];(S21) [23]; (S22) [16]; (S24) [28]

To balance moments of hope and hopelessness is complex and is linked with professionals’ attitudes and the information given by providers (S14) [38]

Hope is promoted through valuing and allowing parents needs in terms of interacting with their child. (S14) [38]

Parents recognized nurses’ efforts for “special attention” regards to their physical, emotional, and spiritual needs, as helpful. (S27) [20]