Tailored Psychoeducational Home Interventions for Children with a Chronic Illness: Families&rsquo; Experiences

Michele Capurso; Gaetano Catalano; Anna Calvaruso; Annalinda Monticelli; Calogero Taormina; Samanta Battiato; Francesca Paola Guadagna; Tania Piccione; Paolo D’Angelo; Delia Russo; Antonino Trizzino; Veronica Raspa

doi:10.5334/cie.100

Figures & Tables

Personalization Process Used by the Team of Psychologists, Department of Pediatric Hematology Oncology A.R.N.A.S. Civico, Palermo.

Table 1

Description of the Main Activities of the LbP Project Delivered to 14 Families in the Palermo Area.

ACTIVITY NAME	DELIVERED BY	SUITABLE FOR PAT CATEGORY SERVICE GROUP	DESCRIPTION OF THE ACTIVITY	CORRESPONDING BES	TOTAL HOURS DELIVERED
Music therapy	Psychologist with music therapy certification	Targeted, Clinical	Work on emotions and relationships to build trusting relationships using nonverbal communication (communicating through the language of sound).	Losing Control, Joy, Vitality, Sharing	72
Psychosocial support to the family	Psychologist	Targeted, Clinical	Provide counseling to help the family deal with specific problems connected to the child’s education, illness, or other difficulties identified at the family level.	Being Held, Contact, Receiving Attention, Being Carried	247
Psychosocial support to the child	Psychologist	Targeted, Clinical	Provide counseling to help the child deal with specific tasks or behaviors connected to their illness or therapy.	Being Held, Being Carried, Control, Contact	270
Support with school	Educator	Targeted, Clinical	Provide support with homework and specific metacognitive functions such as attention, planning, problem-solving, studying, and memory.	Soft Attention, Autonomy Receiving Attention	120
Psychomotricity	Psychomotrist	Targeted, Clinical	Support motor and coordination abilities while also facing relational difficulties associated with the disease, such as shyness. Promote open and positive physical postures through playful motor activity.	Vitality, Control, Sharing	60
Equine-assisted activities	Educator	Targeted	Arrange activities that involve interacting with horses to address physical, mental, and social issues. These activities are designed to foster growth and development.	Active Contact, Sharing, Tenderness	120
Cognitive stimulation intervention	Psychologist	Targeted	Harmonize attention through commitment and respect for the rules and establishing positive relationships.	Control, Sharing, Being Carried	80
Home-based play-educational physical activity	Physical Education Teacher	Targeted, Clinical	Arrange physical activity with a playful educational value to re-establish a harmonious relationship with the child’s body.	Vitality, Control, Sharing	30
Dance-movement activity	Psychomotrist	Targeted, Clinical	Explore the possibility of more open, freer movement, to overcome postural and character shutdowns related to hospitalization, and to unload the negativity linked to the disease experience.	Vitality, Calm, Sharing	71

[i] 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.

CODE	INTERVIEWEE (AGE)	CHILD CONDITION	CHILD AGE	PAT CATEGORY SERVICE GROUP	TOTAL HOURS OF DELIVERED ACTIVITIES, CONTEXT	TYPE OF DELIVERED ACTIVITIES	MAIN ACTIVITY AIMS	ACTIVITY OBJECTIVES
PP4	Mother (42)	ALL	6	Targeted	36, H	Music therapy	Provide psychological home support to child and parents	Facilitating soft motor movements; helping the child to concentrate and follow family rules; support of parenting skills.
					36, S	Interven-tions at school	Promotion of basic learning	Growth through games, drawings, and playful-creative activities to develop basic skills and to enhance the relational aspect of “doing together.”
					36, O	Equine-assisted activities	Improvement of motor coordination through a relationship with nature	Improvement of relational difficulties related to the illness, to improve posture and closed attitudes through playful motor activity.
PP6	Mother (57)	MDB	17	Clinical	20 H	Psycho-logical support to the child	Intervention in compliance and symptom management	Improving the locomotor system through new action possibilities.
PP8	Mother (53)	CVID CRMO	18	Clinical	20 H	Psycho-logical support to the child	Intervention in compliance and symptom management	Construction of therapeutic alliance and interventions for symptoms such as sleeping difficulties, increased psoriasis, and worsening of general well-being. Interventions to support the well-being and university choice of the patient, who is conditioned by fear.
PP8	Mother (53)	CVID CRMO	18	Clinical	20 H	Psycho-logical support to the family	Supporting parenting skills	Helping parents to understand and meet the autonomy needs of their child.
PP9	Mother (45)	SCID	6	Clinical	36 H	Psycho-social support to the child	Intervention in compliance and symptom management	Support connected to communicating about a medical relapse.
					36 H	Psycho-logical support to the family	Psychological support to the family and advice on the Family Protection Project	Increasing awareness of the child’s resources despite the limitations imposed by the illness.
					37 H	Support of school learning	Support of basic learning and social skills	Growth through games, drawings, and playful-creative activities to develop basic skills and to enhance the relational aspect of “doing together.”
PP11	Mother (36)	ALL	13	Clinical	50	Psycho-logical support to the child	Supporting and developing an alliance and symptom management	Improving the child’s locomotor system through new actions.
PP11	Mother (36)	ALL	13	Clinical	20	Psycho-logical support to the family	Supporting and listening to parents’ difficulties in managing their children’s illness	Improving the ability to manage relationships and communicate with the child.
PP13	Mother (53)	PHP, DI, CNS-GCT	17	Targeted	90 H	Music therapy and cognitive rehabili-tation	Tackling some functional and relational difficulties related to the disease experience in a playful way	Promotion of social aspects in response to the isolation caused by the physical illness. Support of cognitive functions and development of personal interests related to music.
					30, O	Equine-assisted activities	Improvement of motor coordination through a relationship with nature	Improvement of relational difficulties related to the illness, to improve posture and closed attitudes through playful motor activity.
					100 H	Dance-movement activity, play-educational physical activity	Improvement of motor difficulties, coordination	Exploring the possibility of a more open, freer movement to overcome postural and character closures linked to hospitalization and to release the negativity linked to their experience of their illness.
PP14	Father (65)	CNS-GCT, DI, PHP	18	Targeted	10	Psycho-logical support to the child	Establishing good compliance and promoting health management autonomy	Supporting the patient to increase their self-awareness, understanding growth, and recognizing personal resources to manage social and family challenges.
PP14	Father (65)	CNS-GCT, DI, PHP	18	Targeted	20 H	Psycho-educational support to the family	Supporting the family to manage the onset of Alzheimer’s in the mother	Reducing the family’s isolation and offering support to manage the mother’s behavioral issues. Addressing and preventing family distress caused by the mother’s illness while providing support and education on Alzheimer’s management. Creating an environment where the son can prioritize his studies and well-being, allowing him to step back from the overwhelming responsibility of caring for his mother.
PP15	Mother (46)	LCH	12	Targeted	98	Psycho-logical support to the family	Providing support for parenting skills and managing issues related to parenting difficulties	Enhancing family well-being and helping to manage quality time together. Special consideration given to the patient’s emotions, sensations, desires, and fears, as well as those of the single mother. Granting the mother additional leisure time to attend to her other child and her own needs. Alleviating chronic family stress associated with the patient’s condition.
					91	Psycho-educational and play-based support to the child	Improving emotion regulation and peer interaction	Recognizing and regulating emotions to develop greater self-awareness and awareness of others. Preparing the child for re-entering school after the COVID-19 lockdown and facilitating positive interactions with their peers.
					10	Equine-assisted activities	Improvement of motor coordination through a relationship with nature	Promoting awareness of own body posture and improving personal well-being through nature.
					20 H	Dance-movement activity	Promoting greater awareness of one’s body concerning emotions	Promoting an awareness of own body through play activities. Providing the means to express and share emotions. Improving motor autonomy.

[i] Note:

Medical conditions: ALL = acute lymphocytic leukemia. CNS-GCT = central nervous system germ cell tumor. CRMO = chronic recurrent multifocal osteomyelitis. CVID = common variable immunodeficiency. DI = diabetes insipidus. HL = Hodgkin lymphoma. LCH = Langerhans cell histiocytosis. MDB = medulloblastoma. PHP = panhypopituitarism. SCID = severe combined immunodeficiency. Ts21 = Trisomy 21.

Activity settings: H = Home. I = individual. G = group. O = outdoor or community center. S = School.

Table 3

Results of the Parents’ Interviews Regarding Their Perceptions of the Effects of the LbP Project (N = 8).

DOMAINS AND CATEGORIES	FREQUENCY*
I. Health status of the patient during the project
A. The patient participated in the project’s activities during their illness (8/8).	General
B. The patient participated in the activities after recovering from the illness, but they were still experiencing psychological after-effects (5/8).	Typical
II. Invitation and motivation to participate in the project
A. The patient’s mother or doctor proposed participation in the project to provide support, help the child assimilate the disease process, promote socialization, and enhance the physical component (8/8).	General
III. Description and delivery of the LbP activities and attendance
A. The objectives were to support the development of improved self-image, socialization, and autonomy (8/8).	General
B. The participation of patients in the project varied in different contexts, with sessions offered several times a week and with different combinations of activities (i.e., physiotherapy, music therapy, play therapy, homework, sewing, communication, school psychological assistance, and gardening) (4/8).	Variable
C. The project activities were free of charge for families and conducted at home and elsewhere, as appropriate. The activities were chosen based on the patient’s needs and attitudes (6/8).	Typical
IV. Barriers and negative aspects of the project
A. The restrictions imposed by the emergency health situation due to COVID-19 and the resulting parental concerns hindered the smooth progress of the project activities (5/8).	Typical
B. The project was ineffective in getting to know the patients and keeping them involved over time (2/8).	Rare
V. Positive effects of the project on children and families
A. The project had positive effects, helping users to feel happy, calm, and protected. It also assisted them in their personal growth, socializing, coping with COVID-19, and enhancing their autonomy (8/8).	General
B. The positive effects of the project included the support of families and collaboration with professional figures and hospitals (7/8).	General
VI. Perceived patients’ feelings associated with activities
A. Patients recalled the project activities and professionals positively (6/8).	Typical
B. Patients were tired, anxious, or angry towards people or activities connected with the project (5/8).	Typical
VII. Future development perspectives
A. The project should be repeated with the following changes: support parents more, reinforce planning, have prevention and COVID-19 emergency protocols, provide more opportunities for sharing with the other participants in the network, intensify activities, and include siblings (6/8).	Typical
VIII. Hospital as a negative place
A. The hospital is mentioned as a place of illness, stressful events, and restrictions (3/8).	Variable

[i] Note: Total N = 8.

*General: 8–7 occurrences; typical: 6–5 occurrences; variable: 4–3 occurrences; rare: 2–1 occurrences.

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

Figures & Tables

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