Palliative care for children and adults is defined by the World Health Organization as the active and global care of the child with life limiting and life threatening diseases and his family. This care involves managing the child and families’ physical, psychosocial and spiritual needs (World Health Organization [WHO], 2018). The criteria for eligibility for pediatric palliative care (PPC) primarily include the presence of a diagnosis of life limiting and life threatening diseases and a highly complex care situation (Benini et al., 2008). PPC are provided by a multidisciplinary specialist team (Fitchett et al., 2011; O’Connor and Fisher, 2011; Verberne et al., 2017; Cervantes Blanco and Jones, 2018) and interface with the professionals present in the other health centers. The network is a functional and integrated aggregation of PPC activities delivered in hospital, pediatric hospice and at home. It is made up of all the institutions necessary for the child care management (hospital and territorial health, socio-health, social-assistance and educational services) and integrates and collaborates with the networks, pediatric and not, existing in the geographic area (Bergstraesser et al., 2013). The psychologist is part of this specialist team which aims to respond in a synergistic way to global needs that are taken care of in a biopsychosocial paradigm (Quill et al., 2003; Brown, 2006; Moore, 2019; Ribbers et al., 2020; Benini et al., 2022).

The experience of the caregivers of young patients is widely taken into consideration. The researchers underline patients’ family members’ fatigue and different psychosocial needs (Jünger et al., 2010a; Collins et al., 2016; Perpiñá-Galvañ et al., 2019) who often live with a strong sense of guilt (Gonyea et al., 2008). The impact of being a caregiver involves social isolation and work difficulties (Wakabayashi and Donato, 2005; Knapp et al., 2010; Price et al., 2012; Collins et al., 2016; Harputluoğlu et al., 2021). Stress, anxiety and depression are common in parents (Collins et al., 2016; Wightman, 2020) and can generate traumatic experiences (Mitchell et al., 2006; Kars et al., 2011). Such emotions are present not only in adult caregivers but also in pediatric patients and their siblings (Barlow and Ellard, 2006; Collins et al., 2016; Weaver et al., 2019).

Family’s reaction mechanisms are a promoter of the child’s health (Cipolletta et al., 2015) and this allows them to develop coping and emotional management strategies (Sloper, 2000; Goldbeck, 2006; Felipe Silva et al., 2021). Psychological needs can be traced throughout the disease’s history, which can be very long and can have different critical moments (Mitchell et al., 2006; Liben et al., 2008). Caregivers often feel they are in a battle and use the metaphor of “combat” to describe their story (Knapp et al., 2010), so continuous monitoring of psychosocial needs is crucial (Goldbeck, 2006; Mitchell et al., 2006; Liben et al., 2008; Weaver et al., 2016). The PPC psychologist takes care not only of the patient, but of the entire family (Kazak and Noll, 2015).

Pediatric palliative care is not limited to end-of-life support, but involves the whole natural history of child’s disease, even where specific treatments for the disease are pursued (Nilsson et al., 2020).

Despite this, PPC is often associated only with end-of-life care and this leads many professionals to not use the service adequately or refer patients late (Thompson et al., 2009; Twamley et al., 2014). Professionals show a certain reluctance to send families to CPP (Davies et al., 2008; Knapp and Thompson, 2012) both because they struggle to use certain terms with their parents (Davies et al., 2008; Durall et al., 2012) and because families can perceive this as a giving up by lead physicians (Thompson et al., 2009).

Furthermore, there is a lack of knowledge on the subject of PPC and this leads to little knowledge of temporal indicators, protocol and strategies (Thompson et al., 2009). In evaluating the specific challenges that differentiate CPP from adult CP, the following are pointed out: the need to offer family support to the whole family and not just to the patient; the presence of pathologies that can have very long life expectancies; the difficulty of having a health system that meets the special needs and priorities of children; the variety of care needs of different clinical conditions; the difficulty in relating not with the patient but often with family members and the tensions that arise; the priority of managing communications taking into account the parental authority and the communicative possibilities of the young patient; the need for highly specialized skills and knowledge (Jünger et al., 2010b). However, some works are also focusing more professional attention on the PPC issue and more recognition of PPC services in ensuring the patient’s quality of life (Jünger et al., 2010b; Bergstraesser et al., 2013).

The purpose of this work is to show, through the retrospective study of clinical diaries, the complexity of the psychologist’s work within the CPP network, in order to increase knowledge of a holistic and global care model.

The sample examined was 225 patients, of which 57 were excluded due to private psychological counseling or absence of psychological sessions records at the time of the study. Therefore the sample of the clinical reports analyzed was 168 patients, of which 49 died. The time range taken into consideration runs from 01/01/2019 to 12/31/2020. The service had a number of variable psychologists (3 between 01/01/2019 to 01/07/2019, 2 between 02/07/2019 to 01/10/2020, and 1 between 02/10/2020 and 31/12/2020). In addition, this period also includes the beginning of the COVID-19 emergency, for which the activity of our service has seen a change since 07.03.2020.

The analysis objectives were to identify: the different teams with which the psychologist works during communications, the settings and target of psychological interviews, the interviews’ topics.

The material examined includes clinical reports, consultations and clinical charts for a total of 1292 interventions: 511 interventions by the PPC team and 781 psychological sessions. The psychological work has been divided on the basis of a thematic analysis (Vaismoradi et al., 2013; Nowell et al., 2017) which has made it possible to identify homogeneous thematic areas by topic. This process took place following the indications of Nowell et al. (2017), using the clinical material produced by psychologists. A deductive approach was used, the writings were analyzed using a priori categories relating to the psychological issues found in the literature and compared with the clinical experience of the PPC psychologists.

These categories have been discussed numerous times on the basis of the readings of clinical material, two different operators have worked on databases (authors AM, AS) and all discrepancies and uncertainties have been addressed through a peer-debriefing.

The thematic areas identified are:

Socio-demographic variables (Table 1) showed a patient average age of 9.5 years, mostly male (54.1%). The most frequent disease was non-oncological one (79.76%). Parents spoke fluent Italian for 88.10% of the sample, most of them were also a married couple (90.48%). In these families, another psychologist was rarely already present before accessing PPC service (6.19%).

As interventions with psychologist presence were all communications that involve psychologists with other members of the PPC team (Figure 1). The highest number of communications were in Hospice with members of the CPP team (31.3%) such as communications relating to treatment, worsening clinical conditions, end-of-life communications, etc. Other interventions included discussions with public and private territorial structures (27.2%) with the aim of sharing family needs and coordinating resources. The PPC team also carried out consultations in local hospitals (18.0%). A structured and formalized intervention was carried by a multidimensional assessment unit to define an individualized care project. Furthermore, the PPC psychologist carried out information and training meetings for school staff (8.8%).

A total of 781 psychological sessions were carried out and divided on the basis of target (Table 2). Most of the interventions were carried out with caregivers (63.5%) and then with patients (18.4%). Less frequently, psychological sessions were carried out with the couple (8.3%), siblings (4.7%), entire family unit (2.7%), and extended family (2.3%). In general, the most addressed issues were relationship management (26.50%) and emotional manifestations (25.22%). Specifically for the target, the parent’s sessions concerned manifestations management (43.75%) and relationships management (20.83%). Caregivers, on the other hand, mostly dealt with parenting and relationships (31.45%) and emotional variables (19.56%) management. Couple sessions mainly concerned end-of-life (47.69%). The end-of-life topic latter issue was more commonly addressed in interviews with the extended family (38.89%), while the family in the strict sense mainly managed interpersonal relationships (33.33%). Siblings, instead, dealt more with emotional management (51.35%).

In general (Table 3), the most common setting was hospice (52.5%), followed by sessions conducted online (27.7%) and by those at home (14.6%). This particular covid-emergency period may had led to favoring online sessions. The least used setting was the hospital (5.12%). Although the hospice setting was the most common, the out-of-hospital setting (home and online) was used for 43.75% by patients, for caregivers for 46.37%, for couples 20%, for siblings 37.84%, for the family 47.62% and for the extended family it was only 5.56%.

This work shows the variety of the psychologist’s skills in CPP, but the main research limitations concerning database. The clinical records are certainly not as punctual as verbatim transcripts and not all contacts between the family and the psychologist have been officially documented. Interviews cover the history of the disease, but it is interesting for future work to analyze the psychologist role after patient death. The data collected can be a first exploration, it would be interesting to be able to evaluate also the effectiveness of the interventions or analyze drop-outs. It might be interesting to consider the perspective of the patient and the family through a qualitative analysis of their point of view. Other future interventions could be aimed at understanding which interventions were useful and why.

The management of complexity is the mission of PPC professionals, the psychologist is called to improve transversal skills and specific intervention methods. The psychologist must first of all show flexibility, combined with the ability to 1dialog with all professionals and be able to deal with different topics with changing targets. Health is promoted in different places of care, which are not only the hospital environment.

In this regard, a dedicated skills curriculum has been developed in the Italian PPC (Benini et al., 2014a). The main characteristics that are required of the psychologist working in this field are:

In general, it is necessary to think of a clear training path for the psychologist in PPC because this expert is called upon to operate in extremely complex areas.

The original contributions presented in the study are included in the article/supplementary material, further inquiries can be directed to the corresponding author.

AM, AS, and VD were involved in the data recollection and thematic analysis. IA and AS drafted the manuscript. PL, GP, and FB were involved in the critical revision of the manuscript and approved the final version of the manuscript. All authors contributed to the article and approved the submitted version.

The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.

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