Tailored Psychoeducational Home Interventions for Children with a Chronic Illness: Families’ Experiences

The quality of life for a child with a chronic illness depends on various factors, including the illness’s severity, medical treatments, psychosocial and educational support, resource availability, and community involvement. These biopsychosocial factors become significant when the child receives care at home. This article presents and evaluates a highly personalized support project offered to 40 Sicilian families, consisting of educational, social, and psychological services delivered at the families homes and in their communities. Guided by the Psychosocial Assessment Tool (PAT) and the Functional Psychology framework, the project employed a family-focused approach to healthcare and was based on a continuous dialogue between all stakeholders. The project was evaluated through a qualitative interview with eight families in the Palermo area, which was analyzed using consensual qualitative research. Results revealed families’ appreciation of the project and the importance of a professional who listened to their needs, provided a connection with the medical team, and tailored activities inside and outside the home. The ability of professionals to listen and adapt activities to different contexts and needs was crucial for the project’s success. We conclude that creating tailored family-level interventions with an educator acting as a liaison with the medical team is a widely acceptable strategy that should be further developed and investigated.

Approximately one in two hundred children in Italy have one or more chronic illnesses (Ministero della Salute, 2016).The care of these children requires close coordination between hospital and community care providers and ongoing interactions between professionals, parents, and the community (Galligan & Hogan, 2021).The quality of life for the child and their family is infuenced by many factors such as the type and severity of the disease, psychosocial and educational support within the family and the local community, access to medical and other services, effectiveness of treatment and rehabilitation, and community acceptance and connectedness (Marchetti et al., 1995;Mitchell et al., 2020;Yang et al., 2022).
Illnesses and their treatments can cause signifcant psychosocial stressors and side effects that can negatively impact the quality of life of both the child and their family; additionally, they may hinder the child's ability to participate in common social and educational activities that are otherwise important for healthy development, such as play, sports, and school (Ospina et al., 2021).However, psychoeducational interventions and physical and psychological therapies designed to support children and their families in managing the psychosocial consequences of chronic diseases and their treatments can alleviate such negative side effects (Barlow & Ellard, 2004;Yang et al., 2022).
Medical advancements have improved the survival rate of children with severe illnesses, and hospital stays have generally become shorter (Howlader et al., 2021;Price et al., 2012).Children with chronic medical conditions at home are challenged with readapting to various physical, emotional, and routine changes (Mitchell et al., 2020).For example, hospitalizations and health issues often compromise school attendance, affecting their socialization with peers (Nap- Van Der Vlist et al., 2020).Therapies may also cause changes in their physical appearance that can worry many children.These factors combined can have negative psychological effects on the developing child (Askins & Moore, 2008).For all these reasons, delivering psychoeducational intervention directly in the child's own home is important (Galligan & Hogan, 2021).
Families face similar challenges and adjustments when dealing with chronic illnesses and similarly need emotional and practical support (Collins et al., 2020).Homecare involves practical and sometimes fnancial reorganization of family life.It requires a new balance between a sense of "normality" and the need to cope with the many demands posed by the illness (Van Schoors et al., 2018).
Given the above challenges, focusing on their sense of belonging is key to supporting children with chronic medical conditions.This focus is achieved by empowering them to interact socially and keep up with their peers (Hung & Chen, 2008;Tomberli & Ciucci, 2021).Based on these premises, the Italian Ministry of Work and Social Policies established a special fund in 2017 to support children with oncology diseases and their families (Law No. 205 of December 27th, 2017).Following the establishment of this fund, several charities and not-for-proft organizations developed projects to improve the quality of life of children and their families in different areas of the country.This study reports on the progress of a project run by SAMOT (Società Assistenza Malati Oncologici Terminali), a palliative and social care association in Palermo (Italy).It reports the qualitative results as perceived by a group of parents.

METHODS
The intervention described in this study consists of several methodological stages, including the initial Learning by Play: Growing Together project, a specifc method for assessing family functioning, and specifc methodologies for planning, delivering, and personalizing the athome psychoeducational intervention.These stages will be explained in detail below.

THE "LEARNING BY PLAY: GROWING TOGETHER" PROJECT
The Learning by Play (LbP) project was initiated in 2021 by the SAMOT association in collaboration with the Libertas association (both in Palermo, Italy) and the Foundation for Social Policy Studies (Labos) located in Rome, along with two children's oncology hospitals in Sicily.The project combined social support principles with "exercise oncology," which aims to improve patients' health through regular, highly customized structured exercises (Adams et al., 2021;Watson et al., 2022).Additionally, sports and exercise programs provide opportunities for children to engage in positive peer interactions and learn new skills.These opportunities help families overcome social isolation and the stigma associated with cancer and other chronic diseases (Schmitz, 2020).
The main goal of the LbP project was to help children with chronic illnesses feel included in society and to sustain family development.This goal was achieved via two types of activities: (a) Play, sport, and leisure activities to children with medical conditions, following the principles of exercise oncology and with the guidance of a medical and rehabilitation expert; and (b) psychosocial, emotional, and relational support to families, young patients, and siblings.Specifcally, the objectives of the LbP project were: (a) Promote the biopsychosocial well-being of children with a chronic medical condition; (b) Provide access to free and tailored psychosocial activities in combination with the therapeutic path to support children holistically in their lives and development at times of illness; (c) Facilitate the participation and inclusion of children in school activities even when they must stay home or in the hospital due to their condition; and (d) Use technological solutions to support children's relationships and sense of belonging through play-and sport-based social activities.
The LbP project started December 1, 2021, and ended in February 2023.During this period, it encompassed 40 Sicilian families, including 73 children and young people with a medical condition (mostly hematological and/or oncological) and some of their siblings.The project activities were managed by 20 professionals (i.e., psychologists, educators, social workers, administrators, and child psychomotrists) under the coordination of the SAMOT association's project leaders.
One characteristic of the project was participation fuidity, which was applied at both the staff and family level.Staff participation was fuid because staff members were involved with families to deliver various services throughout the project.However, the hospital psychologists ensured the continuity of care throughout the project by acting as liaisons between the oncology-hematology departments and the families and supervised all the home interventions.Family participation in the project was fexible and subject to factors such as medical, biopsychosocial, and contextual conditions that changed over time.Some children had to leave the project due to declining physical health, while others could join later after receiving medical clearance.Additionally, the COVID-19 pandemic, which began in March 2020 and resulted in strict lockdown measures, continued to cause concerns for vulnerable individuals until at least the summer of 2022.
The assessment and related personalization of the psychoeducation homebound intervention plan was based on a series of steps designed to meet patient and family needs, utilizing the competencies of the project team and contexts while simultaneously creating connections with community resources.We describe the model implemented by one of the project partners to explain the different steps of the personalization process, namely, the psychologists of the pediatric hematology-oncology department at the Hospital Arnas Civico di Cristina Benfratelli's multidisciplinary team in Palermo, which served 13 families who participated in the project.The t steps of the assessment and consequent planning of the personalized interventions are shown in Figure 1.

ASSESSMENT OF FAMILY FUNCTIONING
The project used the Pediatric Psychosocial Preventative Health Model (PPPHM; Kazak, 2006) a framework for understanding the impact of illness on families.The model highlights the importance of considering the social environment when assessing the child's and family's strengths and vulnerabilities (Kazak & Noll, 2015).To assess family needs, the PPPHM utilizes the parent-report screener Psychosocial Assessment Tool (PAT 2.0; Pai et al., 2007), which classifes families into Universal, Targeted, or Clinical categories based on psychological risk and subsequently recommends appropriate services.The PAT has strong psychometric properties and effectively identifes child behavior and parent stress (Pai et al., 2007).A corresponding set of support activities was developed for each category, varying in sensitivity and clinical characteristics.

PERSONALIZATION OF THE INTERVENTION
The literature suggests that providing intervention components without considering the child's and family's specifc needs is not productive (Mitchell et al., 2021).It is important to focus on the child's and family's key characteristics to identify the most effective and wellorganized intervention options.The LbP project implemented personalized interventions based on assessing each family's risk level.These interventions were designed to ft the individual needs of the patients and their families, considering the available local care systems (Galligan & Hogan, 2021).
To guide personalized intervention planning, the LbP project used an approach based on the functional psychology theory, which focuses on body image and meaningful physical experiences within the environment (Rispoli, 2008).Specifcally, according to functional psychology, every experience involves a holistic understanding of the person as an integrated organism with various functions and subsystems (central and peripheral nervous systems, psychological and endocrine subsystems, physical sensations, emotional states, etc.).
Each holistic intervention can promote the development of resources to manage stress, cultivate well-being, and maintain good mental health by simultaneously addressing different systems in different ways (Rocco et al., 2022).For example, an equine-assisted activity impacts the physiological and postural system through horseback riding techniques, the emotional system through awareness of touch, the relational system through interactions with the animal and others, and the emotional-cognitive system using images and words to recall and share personal memories.The functional psychology theory identifes a set of Basic Experiences of the Self (BES; Rispoli, 2008; see Supplementary File 1) as a tool.These experiences have cognitive, emotional, physiological, and postural effects throughout life.Consequently, individuals gradually develop stable capacities that help them navigate and effectively manage various life situations.In summary, the initial PAT assessment determined the risk level for each family.Based on the results, psychologists identifed a set of missing or misconfgured BES, which, in turn, formed the foundation for the intervention.The most identifed BES were contact, vitality, sharing, and tenderness.Table 1 provides an overview of the interventions implemented during the project.
In line with the PPPHM, the specifc schedule and delivery method of the intervention varied for each participant.However, all activities were grounded in a common set of psychoeducational principles as follows:

DATA ANALYSIS
The data analysis followed the established guidelines for consensual qualitative research (Hill et al., 2005).This methodology provides a rigorous systematic qualitative research method to investigate the subjective experience of a few participants to create rich descriptions of the experiences.
Data were analyzed through a consensual process involving three researchers and three phases: the creation of general domains refecting general content, the creation of related summaries of texts, and the creation of categories based on common "core ideas."Subsequently, frequencies were calculated to determine how the individual categories represented the entire

CODING PROCESS
First, the researchers read all the transcripts of the interviews and identifed the various subject areas.Subsequently, the researchers discussed each interview's segment and assigned it to a core idea until a fnal list of common core ideas was created.Next, the researchers developed similar core ideas for a more general category to summarize all similar core ideas.
Once the list of categories was completed, the researchers reviewed the transcript material to determine whether each text segment was placed in the appropriate category group.Finally, the researchers placed coherent categories in a more general domain by consensus.In line with the recommendations of Hill and colleagues (2005), when a category occurred in more than half of the participants (in our case, more than fve interviewees), we termed it "typical" and reported it as "most participants" who responded in a particular way.Core ideas cited by fewer than half the participants were termed "some" and identifed as "some participants" who responded in a particular way.Low-frequency topics (two occurrences) were labeled "variable," and very rare occurrences (1-2) were labeled "rare."

RESULTS
Table 3 shows an overview of categories and the eight domains identifed.

DOMAIN I
Domain I deals with the description of the participants' health.Here, the parents described the different physical pathologies of their children (e.g., a rare disease of the immune system, leukemia) and provided an overview of their child's functioning at the beginning of the project and throughout.See Table 3, section A of Domain I (I/A), with eight occurrences out of eight participants (8/8).For example, one mother said: "My daughter is immunocompromised and suffers from epileptic seizures, so she often stays at home, and it benefts her when the LbP's operators come to be with her because, like all girls her age, she also has desires and dreams that the project helps to realize."(PP13) The second typical category (I/B, 5/8 occurrences) describes patients who participated in the LbP project after recovering from an illness but were still dealing with comorbidities or psychological after-effects.Sometimes, the parent described the patient using terms refecting severe psychological issues such as anxiety, depression, and so on.According to one mother: "My son has recovered from the organic illness, but he has some side-effects that still need to be overcome.So, rightfully, he still has to come to terms with what he has faced day by day." (PP6) Parents also mentioned the importance of interventions beyond the traditional boundaries, such as professionals going to the patient's home to act within the context of the whole family: "My daughter's medical condition often prevents her from going out, so caregivers come to our home to be with her, and she gets along very well with these professionals.In fact, she can't wait to see them and asks me every time, "Mom, when are they coming?" Even we, her family, have established a good relationship with the professionals who don't just focus on the patient.Together, we all become a family because, as

B.
The positive effects of the project included the support of families and General collaboration with professional fgures and hospitals (7/8).

VI. Perceived patients' feelings associated with activities
A. Patients recalled the project activities and professionals positively (6/8).

B.
Patients were tired, anxious, or angry towards people or activities connected Typical with the project (5/8).provide more opportunities for sharing with the other participants in the network, intensify activities, and include siblings (6/8).

VII. Future development perspectives
Note: Total N = 8.
a mother, they provide support when my husband is not around.They help me and explain the problems.
After the COVID lockdown, the caregivers organized outdoor events such as visits to the botanical garden and various feld trips.It was important for my daughter, who has some challenges, as she could socialize in small, protected groups.For instance, my daughter was thrilled about the trip with the animals and the boat ride.
As parents, we would have never taken her on these experiences because of our fears, but the caregivers encouraged us.Just seeing our children happy is enough to make me feel more at ease." (PP13)

DOMAIN II
Domain II and its related single category (II/A, 8/8) deal with access to the project and its main perceived motivations, described as providing support, helping the user process the disease, providing socialization opportunities, and enhancing physical activity.
"The doctor we met at the hospital proposed to my daughter to participate in the LbP project to socialize with other kids, talk about her illness, and perhaps help her understand that there is more to life than just her illness.
My daughter refuses to go to the hospital because she sees the illness and typical problems of that environment, so she doesn't socialize much there.That's why the doctor tried to involve my daughter in the project, to have her interact more with other people and help her understand that it is possible to face the illness with the help of others."(PP8)

DOMAIN III
Domain III describes the LbP activities and includes a general category, III/A (8/8), about the objectives to support the patients to improve their self-image, increase their personal security, socialize, develop their autonomy, and improve their talents.The interviewees also reported how objectives were highly tailored to the child and family's needs and continuously adapted.For example: "The caregivers who came to our home helped my daughter socialize.They played together, pretending to be fashion designers, and did sewing activities.They played with magic sand, but most importantly, they talked a lot.They shared their diffculties, doubts, joys, and sorrows, and I can see how this helps my daughter to grow."(PP15) "The goals to be achieved with my daughter were built daily together with the caregiver.Sometimes, with specifc activities like music therapy, because of her pathology, my daughter never went out.Hence, the goal was to have a person to help her realize her dream of becoming a singer."(PP13) A second variable category, III/B (4/8), describes patients' participation in the project, which occurred several times a week in various contexts.It is proposed in combination with other activities (e.g., physiotherapy, music therapy, play therapy, tasks, sewing, communication, psychoeducational support, and gardening).For example: "My little girl received two support activities from the project, music therapy, conducted at home, and homework assistance with an educator-psychologist who helped her with school, and they played together."(PP4) "Now they have suggested that we try hippotherapy with the doctor, along with music therapy and cognitive stimulation work.Altogether, the activities take place two to three times a week."(PP13) The third typical category, III/C (6/8), highlights that the project activities were free for the families, conducted at home and elsewhere, and were chosen based on the needs and inclinations of the participants.Parents stressed the importance of the fexibility of the project, considering their family's psychological needs and personalizing the project dangerous situations.The lockdown measures were often seen as worsening the patients' and their families' psychological aspects and as interrupting or limiting many activities.For example, one mother said: "Having a daughter with leukemia during a global pandemic was bad luck because it drove us away from the project, which was helping the whole family to recover.However, when the incidence rates of contagion increased, we decided to stop the project to avoid the inevitable."(PP4) On the other hand, the rare category IV/B (2/8) shows that, occasionally, the project was less effective in getting to know the patients and engaging them over time.This happened when there was a lack of personalization due to the healthcare professional not gaining a thorough initial knowledge of the child and their needs or missed communications with the hospital healthcare team.For example, a mother reported: "The effects were generally positive, but some practitioners had no connection with the hospital; they did not know my son's situation well.This has led to some diffculties.But when there were activities that were a collaboration between the hospital and the home, my son was delighted and felt more comfortable."(PP4)

DOMAIN V
Domain V describes the project's positive effects on the participating children and their families.This domain contains two general categories.Category V/A (8/8) describes the positive effects on the child in helping them to feel happy, quiet, and protected, sustaining their development, improving their socialization and autonomy, and receiving useful information about their physical condition.One mother reported on the positive effect of the project as follows: "My son had the opportunity to share his time of illness outside the home with the psychologist who knew how to manage his resistance, and I saw him gradually become happier and carefree."(PP4) Category V/B (7/8) outlines the family support and facilitation of communication and collaboration with the healthcare professional and hospital.Often, mothers reported the importance of feeling part of a social support network, which counteracted their isolation and the family's self-isolation.According to one mother: "The professionals were dedicated to implementing the interventions.The important thing is that they knew how to talk to us as parents to get to know our daughter better.
In my opinion, the activities have many benefts, more emotional than physical.These benefts also concerned the family members because they considered us an active part, which allowed us to recover and manage the time to work from home better.They provided moral support and fostered a bond with the professionals at the hospital."(PP06)

DOMAIN VI
Domain VI concerns the perceived feelings of patients associated with the activities.This domain contains a general category, VI/A (6/8), which highlights how participation in the activities induced positive emotions.For example: "For me, the caregiver is truly a kind, professional, and incredibly sensitive person.My son is very attached to her and feels very comfortable.Our participation in the project makes us feel good."(PP9) "A beautiful relationship has developed between our family and the caregivers.The project helps us tremendously.Moreover, the caregivers are lovely and always available, and we see our children happy.In short, participating has been very important for us."(PP13) Another typical category (VI/B; 5/8) highlights that some patients felt tired, anxious, or angry towards certain people or activities related to the project.Some patients perceived the project activities as an additional commitment, requiring them to invest more energy in addition to that needed to manage their condition.

"My son attends the activity in the pool, but understandably, sometimes he feels tired because he has to juggle many things.
It is also challenging for us, as family members, to balance school, work, and a series of other things, so we try to do our best.My son tells me he's tired because he has to study and participate in activities, and he's right."(PP6) "With one educator, my daughter experienced some discomfort; every time the activity with her ended, she would tell me that she wasn't very happy.My daughter is very empathetic but couldn't establish a good relationship with the facilitator.
Honestly, I also couldn't form a connection with this professional, so perhaps it was a personal character issue with the caregiver.However, it went well for the others we have met."(PP13)

DOMAIN VII
Domain VII contains suggestions and requests to improve the project in the future, with a typical category, VII/A (6/8), mentioning ways to intensify and improve the activities.All the interviewees stressed that the project should continue and develop in the future and that it should do more to help the families cope with their child's illness, especially in the initial phase of the disease when there is a lot of uncertainty and insecurity.For example, one mother said: "I would appreciate it if the caregivers went to the hospital at the beginning, maybe once or twice, when the child is still there, to have an initial introduction."(PP4) Another way to expand the project's reach is within the family and their relationship with the community.One mother said: "I hope that in the future, the children who participate in the project can be known from the start when they are at the hospital.This initial acquaintance with all the people involved in the project (doctors, psychologists, therapists, parents, and children) would allow for networking and enable the caregivers to build trust with the parents."(PP4) "Home care and outdoor care could be combined to promote socialization and include siblings.In these situations, even siblings suffer, so it would be good to promote activities to do together."(PP15)

DOMAIN VIII
During the interviews, the hospital was sometimes seen as a place of illness or a venue associated with stressful events and restrictions.This is reported in the variable category VIII/A (3/8), referring to the negative physical or emotional state associated with hospital-based therapies.For example, when a mother was asked what kind of relationship her child had developed with the psychologist who was seeing her at the hospital, she replied: "For my daughter, the idea of the hospital is always a drama because she still has nightmares about undergoing examinations, making her nervous.The thought of going to the hospital is flled with anxiety, even though she tries not to show it to me." (PP4) Another mother stated: "The oncology department psychologist suggested that my child try to join in with the other hospital's teens to socialize, talk about her illness, and perhaps make her understand that there is something else besides her illness.But my daughter won't entertain going to the hospital, seeing all the things that happen there, the diseases and the problems."(PP8)

THE SPECIAL CASE OF FAMILY PP14
As an example of the project's fexibility and adaptability, we will discuss the case of family PP14.In this family, the young boy with leukemia showed steady improvement.When he Capurso et al.
Continuity in Education DOI: 10.5334/cie.100 reached the age of 18, he began attending the local university.However, during the same period, the mother was diagnosed with Alzheimer's.The father describes the event as follows: "So, both my son's situation and my wife's occurred one day after the other, so basically this was a double knockout blow, a 1-2 boxing punch."(PP14) The presence of two family members with chronic conditions and the ongoing COVID-19 situation placed a signifcant strain on the family and presented a series of complex and distressing challenges.

DISCUSSION
Overall, the project was well received by both families and children.The LbP objectives, which aimed to provide social participation opportunities through play, sport, and leisure, alongside psychosocial, emotional, and relational support, were fully recognized and appreciated by the respondents (refer to Domains III and V in Table 3).These fndings align with the existing literature on the importance of parenting and social support programs to reduce stress and improve coping and family functioning (Gill et al., 2021;Yang et al., 2022).Parents reported improvements in their children's functioning, their own, and the overall family dynamics (Domain V).They often wanted more activities, hours, and involvement from other family members, indicating that the project effectively addressed real family needs (Domain VII).
The perceived improvements in the child's social-emotional functioning (Domain VI) are particularly relevant.Studies show that children's and adolescents' chronic illnesses are often associated with different forms of emotional distress, including symptoms of anxiety, depression, and post-traumatic stress (Compas et al., 2012).Less frequently investigated are problems of disruptive and oppositional behavior (Compas et al., 2012).The fact that the parents in the LbP project perceived improvements in the child's emotional state shows how the interventions changed the child's behavior in their own setting and their daily life.
We believe that underlying the project's success is its high level of tailoring of the psychoeducational plans to the needs of the child and the families and that the activities were free of charge.This approach allowed young people and their families to participate in the planning and organization of support activities, combining psychosocial care and education in response to their individual needs (Cowen et al., 2010).Such active participation is important to children and families because the emphasis is on the young person and their family as capable of contributing to their own health, and not just as service users (Saffer et al., 2018).
The interventions focused on getting to know the children and families in their own contexts, informing them about different activity options, giving opportunities to try things out, and making better-informed choices.The interview results show that when the project professionals overlooked this process, the parents noted this as a major defect (see Table 3, Domain IV).
The interview results also highlight the importance for the families and children to participate in activities that are run in locations connected to a sense of normalization; indeed, parents often mentioned the comfort of being at home (Domain VI).These fndings align with the previous research of Jibb et al. (2021), showing that parents and children undergoing homecare have more opportunities to engage with friends, siblings, and each other while developing strong therapeutic relationships with their clinicians.This fnding should also be interpreted in view of the fact that the COVID-19 pandemic was still ongoing when the project was run and meant that families saw the home as a safe place.
The fndings related to doing things in a familiar or neutral context could better inform stakeholders on the importance of choosing the child's home or other natural or public places as venues for psychosocial activities.Given that the main goal of chronic disease health management in children is to promote and support their best possible development in all areas and to prevent or reduce dysfunctions on behavioral, emotional, and social levels (Gill et al., 2021), this process should start with the choice of a venue that encourages positive development.In our analysis, this suggestion is reinforced by Domain VIII ("The Hospital as a Negative Place").Indeed, the hospital was often mentioned as a place connected with stress and pain with interviewees repeatedly reporting that their child did not willingly attend the hospital.Therefore, any activities that could be performed elsewhere (e.g., psychotherapy, peer group meetings) should occur in another location whenever possible.
Another important fnding associated with project personalization was that when the educators and healthcare professionals visited the children and families in their homes, they could dynamically adapt and consider activities based on a spur-of-the-moment assessment (Domain III).The need for fexibility is typical for those working with children with a medical condition at home (Capurso et al., 2021), showing that planning interventions must always be fexible and that the professionals' interpersonal skills to read an ever-changing and fragile situation and adapt accordingly are essential.The main example of adaptation is that the LbP project initially aimed to involve young people and their families in social and communal activities outside their homes.However, due to the COVID-19 measures and concerns about ongoing contagion risks, project professionals had to change or adapt many of the activities to be done at home.Another example of the project's ability to adapt is seen in the case of family PP14, as described at the end of the Results section above.
The fndings, connected to the parents' appreciation of the project and the critiques of things that did not work well, highlight the importance of conducting a family-based initial assessment and discussion.Such a process will gather knowledge of the specifc needs and characteristics of the family and subsequently enable personalization of the types and modes of intervention delivery.However, in the context of childhood illness, greater intensity and complexity of interventions do not necessarily lead to better outcomes.For example, additional schedules to the daily agenda may create more burdens for parents, children, and families (Mitchell et al., 2021).A discussion with the family and the young person with a chronic illness allows for an assessment of the individual's wishes and aptitudes while considering the family's concerns or fears.Discussion also facilitates communication with the hospital-based healthcare team, which can positively affect patient compliance.Through dialogue with the family members, a professional can consider aspects that might otherwise be easily overlooked, such as logistics (e.g., transport, equipment), physical strains connected to the participation in a specifc activity, or interference with other children or family occupations.

CONCLUSION
From a systemic perspective, interventions with children with a medical condition and their families often have effects that extend beyond the immediate family unit.Such interventions can lead to positive changes at various levels, improving the overall health and well-being of the entire family by altering their perception of control and interactions with the external environment.
Implementation of evidence-based interventions require the involvement of a caring professional who can establish a compassionate relationship with the families and children (Cousineau et al., 2019).From the family's perspective, listening is essential for patient-centered care and the customization of activities.It is also a fundamental requirement for a strong therapeutic alliance as it enables young patients and their families to actively participate in their treatment and adopt a collaborative approach toward recovery or improving their quality of life (Epstein & Street, 2011).
More healthcare activities are increasingly being transferred to the home (National Research Council, 2011).This study supports such the existing literature by showing that it is not only medical activities that need to be transferred.Various psychoeducational services must be provided to the patient and their family to promote resilience and development at home.This often requires new professional skills, effective listening, and the ability to coordinate among all professionals involved in home healthcare practice.

STUDY LIMITATIONS
The project evaluation was limited to a small sample of participants, all associated with a single pediatric care center in Palermo.Further, the study was constrained by the availability and willingness of participants to share their experiences and perspectives.We are unaware of why some families declined to consent to participate in the evaluation interview.Nevertheless, this qualitative study provides a wealth of data derived from the perspectives of participants involved in a specifc program that aligns with the objectives of this research paper.
Finally, self-report testimonies and all the responses should be understood as the perceptions and viewpoints of the individuals interviewed and, thus, are subject to potential bias.Several measures were implemented to minimize interview bias.First, a semi-structured interview protocol was used, ensuring all participants were questioned about the same main topics.Additionally, the interviews were conducted by a trained interviewer, who followed a jointly constructed discourse with the participants.The researcher was blinded to the identity of the patients and interviewees, and all participants were informed of that.Furthermore, general statements made by the interviewees were validated by requesting specifc examples to enhance the reliability of the information collected.This approach also facilitated the subsequent coding of the text.
Despite these limitations, the data provide valuable insights.The fndings validate the project (with 100% of the interviewees reaching a consensus on the positive project outcome) while depicting specifc aspects of how the project activities were experienced within each family.

IMPLICATIONS FOR FURTHER RESEARCH AND DEVELOPMENT OF THE INTERVENTION
Training of home-based professionals is crucial for these types of projects to be successful.Different content can be delivered in such training, such as developing listening and empathic abilities.These skills are particularly important, as they greatly contribute to the successful outcome of the project.One example of this type of training could be the Thomas Gordon Effectiveness Program (Gordon & Burch, 2003) or any other established counseling course (Pieterse et al., 2009), which can be delivered in the form of intensive workshops to meet the needs of working professionals.Another type of training that would beneft similar projects relates to the BES (refer to Supplementary File 1).Since the interventions are based on different BES, professionals must become aware of the meaning, signifcance, and psychological dynamics that defne the particular BES they are working on with each intervention.A workshop structure would enable professionals to actively develop ideas on various activities and learn how to connect them with each BES.
The component of involving families in their own healthcare can be further developed.For instance, families could gradually assume responsibility for organizing specifc community events, while volunteer associations, deeply rooted in the community, could scale back their involvement and provide logistical and administrative support instead (e.g., obtaining public permits, arranging transport, securing reception facilities, renting public spaces).This would make it easier to support the activities in the long term.Continuous support for communication

Figure 1
Figure 1 Personalization Process Used by the Team of Psychologists, Department of Pediatric Hematology Oncology A.R.N.A.S. Civico, Palermo.
the disease, such as shyness.Promote open and positive physical postures through playful motor activity.shutdowns related to hospitalization, and to unload the negativity linked to the disease experience.

A.
The project should be repeated with the following changes: support parents Perceptions of the Effects of more, reinforce planning, have prevention and COVID-19 emergency protocols, Typical the LbP Project (N = 8).

Table 1
Capurso et al.Description of the Main Activities of the LbP Project Delivered to 14 Families in the Palermo Area.Note: Families PP5 and PP10 were omitted because they withdrew from the project.

Table 2
Overview of the Eight Families Interviewed, the Child's Condition, and Related Home-Based Interventions.
Capurso et al.Continuity in Education  DOI: 10.5334/cie.100sampleand labeled using conventional terms.The researchers conducting the analysis were an associate professor of developmental psychology with expertise in educating children and young people with medical needs, a psychology researcher with relevant experience in consensual qualitative analysis, and a sociology researcher with relevant experience in qualitative research.

Table 3
Results of the Parents' Interviews Regarding Their Capurso et al.
. For example: The caregivers are a ray of light, an opportunity, and moral support during this diffcult time.I hope it can continue; it moves me deeply."(PP13)DOMAINIVDomainIV concerns the perceived barriers to the activities, with a typical category, IV/A (5/8), connected to the COVID-19 situation and the family's fear of exposing the patient to Despite the challenges, the project successfully adapted its goals and interventions to provide targeted support to the entire family.Additionally, it helped with practical matters, partially alleviating the father's heavy workload and responsibilities."So, the professional who comes to our house is amazing because besides talking with my son and me about all our family's needs, she also takes care of some paperwork and anything else we need.We absolutely need someone like her.She also supports my wife, to whom she dedicates quite a bit of time … the time she has available, so I'm really very happy indeed about the help that the project gives us.When she gives us an appointment, we wait for her with open arms because, for us, it's like having an encyclopedia that helps us with every aspect: 360° help.So, the beneft of the help is really signifcant, and it's not just help for my son, it's also help for my wife, and for me, because we see her as a reference point when we have a problem or a doubt."(PP14)