Parents’ hope in perinatal and neonatal palliative care: a scoping review

The discovery of a pregnancy is an essential milestone in the parenting process and creates expectations about life, health and the child [1]. When challenged by prematurity, malformations, congenital diseases and even death, expectations are frustrated, and suffering is experienced [1]. Receiving the diagnosis of a child’s life-threatening condition is challenging to cope with and requires professional support aligned with palliative care (PC).

Perinatal and neonatal Palliative Care is a coordinated care strategy that encompasses actions in obstetric and neonatal care, focusing on maximizing quality of life and comfort for fetuses and newborns with conditions considered life-limiting [2]. The PC practice is not aimed at a disease-modifying treatment but, rather, a collaborative support process for the incorporation and management of losses experienced, centered on people, their values and beliefs [2, 3]. Critical elements in the context of perinatal and neonatal PC are shared decision-making, care planning and coping with distress, with attention to its early introduction and maintenance into childhood [2].

The concept of hope in neonatal and perinatal contexts is related to parental expectations and desires for mobilizing energy to achieve babies’ positive outcomes [4]. Regarding attributes, they are an experiential process targeted toward the present and future in your lives [4]. Hoping is not a single act but a complex of many thoughts, feelings and activities that change with time [5].

Hope is a multidimensional dynamic life force characterized by confidence yet uncertainty about achieving a future good, which is realistically achievable and personally necessary to the hoping person. In this context, hope has implications for action and interpersonal relatedness, which are directly associated with family coping [6, 7]. In this framework, hope is conceptualized as being compared to two spheres (generalized hope and particularized hope) and six dimensions (affective, cognitive, behavioral, affiliative, temporal, and contextual) [5]. Generalized hope has a broad scope and is not linked to any concrete or abstract hope object. It is the same as intangible hope. Particularized hope involves a special effect or being in a good state – a hope object. Hope objects that are hoped for can be concrete or abstract, explicitly stated, or implied [5].

Each of the six dimensions has a set of components that structure the hope experience. Changes in emphasis within and among the dimensions and their elements characterize the process of hoping. In the same instances, multiple hope processes related to different objects are active in the same person at the same time: (i) the affective dimension of hope focuses on sensations and emotions that permeate the entire hoping process; (ii) the cognitive dimension focuses on the processes by which individuals wish, are imaginative, wonder, perceive, think, remember, learn, generalize, interpret and judge about the identification of hope objects; (iii) the behavioral dimension focuses on the hoping person’s action orientation about hope; and (iv) the affiliative dimension focuses on the hoping person’s sense of relatedness or involvement beyond the self as it bears upon hope. This dimension includes social interactions, mutuality, attachment and intimacy, other-directedness, and self-transcendence; (v) the temporal dimension focuses on the hoping person’s experience of time (past, present, and future) about hopes and hoping. Hope is directed toward a future good, but the past and present are also involved in the hoping process. (vi) The contextual dimension of integrated hope is brought to the forefront of awareness and experience within the context of life as interpreted by the hoping person. The contextual dimension focuses on those life situations or circumstances that surround, influence and are part of a person’s expectations and are an opportunity for the hoping function to be activated or to test hope [5].

Parents of children who have life-limiting and life-threatening diseases undergo profound and pervasive uncertainty, leading to their own illness experience being described as a dual reality in which fighting for survival and recognizing the threat of their child’s death are daily challenges. Hope is an indispensable and vital source of strength for parents, allowing them to cope with their children’s condition and with palliative care and enabling them to continue living. Recognizing the meanings, facets and dimensions of hope that emerge in parents’ experiences may help health professionals better understand and develop a comprehensive, collaborative, and supportive care plan that considers the intricacies inherent to the complexity of the parents’ experience and the importance of hope [6, 7]. This allows for alignment with family-centered care.

The present study sought to integrate knowledge and to advance the understanding of hope within the context of neonatal and perinatal PC, expand health interventions focused on hope, and foster new research in the area. The objective was to map scientific evidence on parental hope in the perinatal and neonatal palliative care contexts.

This study was developed through the five steps recommended in the Joanna Briggs Institute (JBI) protocol [8]: definition of the research question; identification of relevant studies; selection and inclusion of studies; data organization; and grouping, synthesis, and reporting of results. To ensure the integrity of this manuscript and methodological rigor, the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR) checklist and the PRISMA flowchart of the study selection (Fig. 1) were used to report this study [9].

A primary survey of the International Prospective Register of Systematic Reviews (PROSPERO) and The Cochrane Library was carried out in the second half of 2020, with no previous reviews identified. The research protocol was registered and updated in the Open Science Framework on July 26th, 2023 (https://​osf.​io/​u9xr5/​).

The PCC mnemonic was used to elaborate the guiding question: Which is the evidence on the hope of parents who experience perinatal and neonatal palliative care? Population in question (P): parents experiencing fetal and neonatal conditions eligible for palliative care; Concept (C): hope [5]; and Context (C): palliative care.

The research was carried out in the following databases: Medical Literature Analysis and Retrieval System Online (MEDLINE), Cumulative Index to Nursing and Allied Health Literature (CINAHL) and American Psychological Association (APA PsycINFO) in February 2021, updated in May 2023. Original studies were selected, such as randomized and nonrandomized clinical trials, bibliographic, documentary, experimental, field and case studies, review studies and reflective or theoretical studies, with the following types of approaches: quantitative, qualitative, theoretical, or mixed-methods studies, primary and secondary (reviews/reflective/theoretical) and data triangulation. There was no restriction regarding the research period, and the languages included were English, Spanish, and Portuguese. Exclusion criteria were applied to publications covering other age groups, articles focusing exclusively on death, and those in which the target audience was health professionals and not parents. Letters to the editor, abstracts, clinical protocols, and annals of scientific events were also excluded.

The databases and the language limits were defined based on pretests, and several preliminary searches were carried out with the support and input of a research librarian. These databases were chosen for being the most appropriate for the scoping review on parental hope in perinatal and neonatal palliative care, as they have the most relevant production on this subject matter. Regarding language, we considered the feasibility criterion; however, notably more than 90% of the production on the topic is in English.

The gray literature was an exclusion criterion for this scoping review. As the intersection between the concepts of parental hope and perinatal and neonatal palliative care is a new and emerging process in terms of science, the decision was made to map the literature published on this topic.

This study considers the WHO definition of pediatric palliative care applied to perinatal and neonatal palliative care [10‐12]. Neonatal-Perinatal Palliative Care is a complete, multidisciplinary approach to providing comprehensive care to families when there is a potentially life-limiting, serious or clinically complex fetal or neonatal diagnosis (from 22 gestational weeks to 28 weeks after birth) to relieve pain and control symptoms and improve the care quality and well-being of fetuses and infants, their families and health care providers involved. It is holistic, family-centered, comprehensive, and multidimensional, so it addresses not only the physical aspect but also the psychological, social, and spiritual dimensions [2, 10, 11].

Concerning eligibility criteria, in this study, the definition of populations in need of perinatal and neonatal palliative care was adopted [2, 10, 11]. The criteria were families or parents facing a condition in which there is a lethal diagnosis in the prenatal or neonatal period or a diagnosis for which there is little or no prospect of long-term survival without severe morbidity or extremely poor quality of life and for which there is no cure [2, 10, 11].

The lists of references of the articles selected were systematically searched to find additional literature relevant to this review.

The search strategy adopted was developed with descriptors and Boolean operators, as well as the MeSH descriptors applied in the scientific databases. (for full search strategies, see Supplementary Table 1).

All the studies retrieved were imported into Rayyan.ai reference management software (https://​www.​rayyan.​ai/​), and duplicates were removed. Articles were initially selected by examining their titles and abstracts and, in a second selection stage, based on full-text reading. The selection process was performed based on the inclusion and exclusion criteria prespecified in the review protocol. An independent review was carried out by two pairs of reviewers (AOS, MW, LFF, and PLMD) to reach consensus and increase consistency when selecting the articles that were part of this review. This reference manager software was also used to organize the results.

The process of extracting data from the sources of evidence followed the JBI instrument template for source of evidence details, characteristics, and results extraction. In this study, the following information was extracted: author, year of publication, country where the study was conducted, participants, theoretical and methodological framework, evidence of hope, and implications.

The analytical process took place at the level of characterization of the studies and publication trends and at the level of hope evidence in the parental experience of perinatal and neonatal palliative care. The parental hope evidence was extracted in full and grouped into thematic categories representing the hope dimensions (affective, cognitive, behavioral, affiliative, temporal, and contextual) according to the theoretical model guiding this scoping review [5]. In addition, an analysis of the implications of the studies was conducted to map the gaps and challenges for practice and research into parental and family hope in the context of pediatric and neonatal palliative care.

The results are summarized in Table 1 with the characterization of the studies, including title, country, publication date, aim, participants and study design. The hope evidence and corresponding dimensions according to Dufault and Martocchio’s Framework [5] are presented in Table 2.

Faced with the diagnosis and initial information about the child’s situation, the parents’ hope process has been linked to the management of “uncertainties” and the revelations of “certainties”, when information support is crucial and linked to parent-professional interactions [25‐29, 13‐36, 21‐24]. Parents need collaborative discussions with specialist providers to make decisions about the continuity of the pregnancy and childcare [23, 27, 28]. Trust must be nurtured in care relations because it influences hope and decision-making [23]. In sum, information support exerts effects mainly in the affiliative and cognitive hope dimensions. In this way, parents can identify goals they want to achieve in the short and medium term, as they have the necessary and realistic information to support their experiential processes.

In most cases, in the peri/neonatal PC context, the diagnosis is made by an ultrasonographer who is not part of the family’s care and, therefore, has no knowledge of the family’s life history on first contact. When communication is carried out in a hostile manner and in an unwelcoming environment and ambience, it becomes devastating for hope [17‐28], again highlighting the cognitive and affiliative hope dimensions.

The articles included in this scope point to the need for parents to process the information they receive to gradually establish attachment and bonds, value time with their newborn, create memories and experience parenthood [12, 29, 30, 27‐38, 15‐23, 17‐28], which is strongly connected to the affiliative, affective, and temporal hope dimensions. However, there is interference in the cognitive and behavioral dimensions, as it is under the understanding that time with the child is limited and uncertain (temporal and affiliative dimensions) that the parents expressed the desire to make the most of the pregnancy moments, such as naming the child, which lends value to the newborn’s humanity; including it in family rituals (having a Baby Shower), celebrations and holidays; seeking closer physical, auditory and visual interactions with it before and after birth; setting up the baby’s room and buying layette items; going on walks and trips for the newborn to visit different places; and experiencing and performing activities such as other pregnant women (behavioral dimension). These are attachment and care actions with the child [37, 27, 18‐36] (affiliative dimension).

Social support takes part in feelings of hope, well-being and resilience and is singular in terms of who they want to connect to [12, 15, 28, 31]. On the other hand, religion and spirituality were highlighted in the articles as important to make sense of the situation and distress faced [13, 32, 33, 31, 24]. Spiritual and religious beliefs contribute to understanding life events and are related to the affiliative dimension of hope. Through religion and spirituality, people seek to mitigate the agony of the finitude of life and their suffering. For parents who have decided to invest in their child’s life, hope is sustained by the belief that life is important; therefore, the child deserves a chance to live [25‐29, 13‐30, 32, 27‐31, 19, 15], as well as by the understanding that having time with the newborn is an opportunity for parenthood [13‐31, 19, 15, 34]. Higher power and spiritual beliefs guided hope in some studies [24, 31, 32]. The above illustrates that the affective and affiliative hope dimensions have a close connection.

The quality and nature of the relationships involved in parental care shape the parents’ needs, promote a positive experience and a parental role, deal with emotions and resilience [12, 20, 23, 35], and have their wishes respected [35]. This articulation illustrates the relation between the affiliative, affective and cognitive hope dimensions.

The interaction with the professionals at the time of the diagnosis or suspicion was highlighted in the review, attributed as a distressing and unwelcoming moment related to hopelessness. The parenting process is taking place; mothers and fathers are facing a complex and difficult time, in which hope is an imperative of parental existence [39]. Information about the diagnosis or its suspicion interferes with the newborn’s existence in family life (cognitive dimension); therefore, the way in which professionals inform and support bereavement is crucial.

The expansion of prenatal screening and technological advances tends to amplify such situations and, therefore, the establishment of interactions directed to the parents’ needs, focusing efforts on the people affected by the news, respecting silences, providing opportunities for conversations, and placing them at the center of the care provided.

This review identified health professionals’ actions as a direct determinant of parents’ hopes and, therefore, of their coping and the scope of care and its alignment with PC precepts. However, a tendency has been described for professionals to quickly diagnose perinatal conditions that determine the need for PC, without talking to parents about the meaning of such diagnosis and its consequences, let alone sharing decisions with them [40]. The professionals’ effective communication skills and preparedness to work in PC cases are extremely important and linked to the parents’ hope and quality of their experience in PC [40]. However, professionals are currently unprepared to deal with the vulnerabilities, demands and needs that emerge in the PC context [41‐43], which is seen in the results of this review. It would be a contribution if health professionals’ training turned its gaze to human subjectivity and incorporated this discussion, expanding a human and singular view of care.

This scoping review has produced a broad mapping and innovative synthesis of evidence of parental hope in perinatal and neonatal palliative care. The limitations of this study are the languages (English, Portuguese, and Spanish) selected and the noninclusion of gray literature.