Table 1 Characteristics of the studies included in the review
From: Parents’ hope in perinatal and neonatal palliative care: a scoping review
ID | Country and Publication date | Aim | Participants | Design |
|---|---|---|---|---|
S112 | United Kingdom 2023 | Increase understanding of how parents experience the antenatal diagnosis of a life-limiting or life-threatening condition during pregnancy and following the birth of their baby. | Not applicable | Qualitative meta-ethnography |
S213 | Netherlands 2023 | Provide an insight about parent personal experiences of their sons’ birth and making decisions at the limit of viability. | Not applicable | Reflexive Narrative |
S314 | Ireland 2023 | Explore the care experiences of parents whose pregnancy was diagnosed with fatal fetal anomaly. | 6 mothers and 4 fathers of children diagnosed with a fatal fetal anomaly | Qualitative phenomenological study |
S415 | Germany 2022 | Enhance our knowledge about care experiences and needs of parents who decide to continue pregnancy despite the life-limiting condition of their unborn child and to reconstruct their pathway through existing healthcare structures. | Mothers and fathers who continued pregnancy following a severe and life-limiting fetal diagnosis | Qualitative descriptive study |
S516 | USA 2022 | Provide an overview of the role that Perinatal Palliative Care providers play in the care of families facing severe or life-limiting neurologic diagnoses. | Not applicable | Literature Review |
S617 | USA 2022 | Explore the experiences of women who received life-limiting fetal diagnoses during pregnancy and support from a perinatal palliative care program. | 12 women who experienced pregnancies with life-limiting fetal diagnoses and received care from a perinatal palliative care program. | Qualitative descriptive study |
S718 | Brazil 2021 | Synthesize qualitative evidence from primary studies to better understand the experience of the spirituality of bereaved parents and its relationship with adapting following a stillbirth. | Not applicable | Qualitative meta-synthesis |
S819 | USA 2021 | Report on what is known about the cultural, spiritual, and religious practices of parents and how this might impact the neonates who are born with a Life Limiting Fetal Diagnosis. | No applicable | Integrative literature review |
S920 | USA 2020 | Synthesize parental decisions through potentially life-limiting fetal diagnosis in pregnancy and the principles of perinatal palliative care | Not applicable | Literature review |
S1021 | Australia 2020 | Provide empirical Australian evidence of views and experiences of care provision from health professionals (HPs) and parents | 11 parents (7 mothers and 4 fathers, from 7 parental couples), who decide to continue a pregnancy following a diagnosis of a lethal fetal abnormality and 08 professionals | Qualitative phenomenological study |
S1122 | USA 2020 | Review recent and relevant literature on the importance of birth planning and the role of perinatal palliative care when a life-limiting fetal diagnosis is made | Not applicable | Literature Review |
S1223 | Ireland 2019 | Increase the understanding of the lived experience of mothers with a prenatal lethal diagnosis who continued their pregnancy, and their response to the care they received. | 4 women/mothers | Qualitative phenomenological study |
S1324 | USA 2019 | Discover important components of a birth plan for parents and providers who carry them out, and understand the experience of parents and providers with birth plans. | 20 parents living a pregnancy complicated by a life-limiting diagnosis and 116 providers | Mixed-methods, descriptive, exploratory survey |
S1425 | USA 2018 | Describe parents’ experiences of continuing a pregnancy with an LFD and to examine parents’ needs and responses to healthcare provider interactions in the prenatal, intrapartum, and postnatal periods. | 30 parents (16 mothers and 14 male partners) | Qualitative phenomenological study |
S1526 | USA 2017 | Describe, using literature on trisomy 13 and trisomy 18, how information shared between parents and providers can improve perinatal counseling and family support. | Not applicable | Literature review |
S1627 | Ireland 2017 | Explore parents’ perception of pregnancy and the loss of a twin, their experience of diagnosing a congenital abnormality and their experience of CPP. | 09 parents (5 women/mothers and 4 men/fathers) | Qualitative phenomenological study |
S1728 | USA 2016 | Investigate the developmental tasks of pregnancy that parents undertake after receiving a lethal diagnosis and continuing the pregnancy. | 16 mothers, 13 fathers and 1 female partner. | Qualitative phenomenological study |
S1829 | Canada 2016 | Examine parental goals/decisions, the length of life of their child and factors associated with survival. | 332 parents (202 men/fathers and 59 women/mothers) | Descriptive quantitative study |
S1930 | USA 2016 | Share the experience of having an infant in the NICU, perspectives of a life transformation and lesson in the hope of helping health professionals consider a balanced view of the NICU’s impact on families. | 25 health professionals parents or relatives of high-risk newborn | Experience report |
S2031 | New Zealand 2013 | Describe the journey for a family when they decided to continue the pregnancy and build a support network to meet their personal, physical, emotional, cultural, religious and spiritual needs. | One case | Case study |
S2132 | USA 2013 | Synthesize the existing qualitative literature about parental involvement in ethical decision making for critically ill neonates and develop a preliminary theoretical framework of parent ethical decision making. | Not applicable | Qualitative meta-ethnography |
S2233 | USA 2012 | Report findings related to the varying notions of hope between parents who were at risk of a periviable delivery and their healthcare professionals. | 40 women/mothers and 14 male partners/fathers | Qualitative narrative study |
S2334 | USA 2011 | Describe how parents make life support decisions for extremely premature infants from the prenatal period through death from the perspectives of parents, nurses, and physicians. | 5 cases involving life support decisions. | Case study |
S2435 | USA 2011 | Describe the experiences of women and male partners as they interpreted and made meaning of the fact that their fetus was substantially impaired, with particular attention to the way facts were presented to them and how they constructed their own truth. | 15 women and 10 of their male partners | Qualitative ethnography study |
S2536 | USA 2011 | Increase practitioners’ awareness of spiritual and existential distress and to provide strategies to address such needs, particularly at the end of life. | 6 cases | Case study |
S2637 | USA 2011 | Explore parents’ experience with a lethal fetal diagnosis during pregnancy to gain insight into their needs. | 5 women/mothers and 3 men/fathers; 3 couples took part in the study together. | Qualitative descriptive study |
S2738 | USA 2005 | Examine the experience of low-income, African-American parents surrounding perinatal loss and to describe how other life stressors influenced the parents’ responses and caring needs. | 23 parents, from 17 families consisting of 17 mothers and 6 of their male partners. | Qualitative phenomenological study |