Family-centered care on a physiotherapy course: case reports

Cunha, Romana Francthesk Mendes da; Costa, Karine Beatriz; Morais, Rosane Luzia de Souza

doi:10.1590/fm.2022.35301

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ORIGINAL ARTICLE • Fisioter. mov. 35 • 2022 • https://doi.org/10.1590/fm.2022.35301 copy

Family-centered care on a physiotherapy course: case reports

Authorship SCIMAGO INSTITUTIONS RANKINGS

Abstract

Introduction:

Family-Centered Care (FCC) is a philosophy that recognizes the family as a partner in the intervention process and currently constitutes one of the most important practices in pediatric physical therapy intervention. For this reason, FCC should be part of pediatric physiotherapy training so that future physiotherapists are able to include it in their clinical practice.

Objective:

To verify the feasibility of applying FCC as part of an undergraduate Physiotherapy course, focusing on the activity of children with different health conditions.

Methods:

This is a case report, based on information collected from medical records, on an intervention program carried out with 5 children and their families, in the home, once a week for seven weeks, by students of physical therapy in pediatrics. For pre- and post-intervention assessment of the children, standardized instruments were used: Gross Motor Function Measure (GMFM) and the Alberta Infant Motor Scale (AIMS). Reports were collected from families and students regarding the FCC experience.

Results:

The children with neurological impairment increased the GMFM target area score by more than 5%, indicating clinical improvement. A child at biological risk had a pre-intervention AIMS percentile of < 25 and a post-intervention percentile of 50, while another child with developmental delay did not alter his percentile. At the end of the intervention, families reported greater confidence in carrying out activities with their children and students reported the experience as relevant to their professional training.

Conclusion:

The practical application of FCC proved promising in the academic context of pediatric physical therapy.

Keywords:
Child; Family; Higher education; Physiotherapy

Chilfd	Body function and structure		Activity and Participation		Contextual Factors
Chilfd	Diagnosis and classifications	Deficiency of body structure and function	Activity and participation	Limitation and restriction	Personal and environmental
1	Spastic cerebral palsy (quadriplegia) GMFCS III, Mini-MACS II	Postural control deficit. Muscle weakness (in the lower limbs and trunk). Associated reactions. Right converging strabismus.	Sitting in the buddha position, he is able to pull himself up to a standing position with little assistance. Manipulates and reaches. Maintains the standing position with the support of hands and hips. Moves by dragging. Participates in outings with parents.	Does not perform forward and lateral gait. Does not assume the four-pronged position. Maintains sitting on the floor with one hand or with assistance, thoracic kyphosis, hip abduction, and knee flexion, but is unable to assume this position independently. Does not perform bimanual activities sitting on the floor. Doesn’t ride his tricycle.	2 years and 11 months. Male. Cheerful, communicative, and motivated. Outings on weekends and late afternoons. Parents present and participative. Positive environmental characteristics (facilitators): access to regular school, home environment rich in stimuli and adaptations. Negative environmental characteristics (barriers): irregular surfaces in the external area of the residence that limit mobility.
2	Mixed cerebral palsy (quadriplegia) GMFCS IV, Mini-MACS IV	Dyskinetic-type hypotonia chorea. Scoliosis. Visual and hearing deficit. Muscle shortening (iliopsoas, tensor fascia latea, and hamstrings). Hip in flexion and abduction. Postural control deficit.	In the supine and prone positions, performs movement with the upper and lower limbs. Performs supine to prone roll.	Difficulty sitting without support and keeping the head at 45°. Limitation on transfers. Interaction difficulty.	3 years and 10 months. Male. Calm, collaborative. He has a 1-year-old sister. Outings on weekends. Positive environmental characteristics (facilitators): Participative and motivated mother, access to regular school and other health services, has an adapted bathtub. Negative environmental characteristics (barriers): domicile in a place of difficult access and city structure does not favor mobility with a wheelchair.
3	Hypotonic cerebral palsy (quadriplegia) GMFCS V, Mini-MACS III	Global hypotonia. Visual impairment. Macrocephaly.	Reaches objects in the midline. Manipulates. Rolls to both sides. In prone, maintains head position. Sitting, with hands supported, maintains control of head and trunk for a few seconds. Plays with the sister.	Does not assume a standing posture. Has limitations making transfers.	2 years. Male. Introspective, easily irritated. He has a 10-year-old sister. Positive environmental characteristics (facilitators): access to other health services. Negative environmental characteristics (barriers): Does not attend school, home environment with little stimulation, female single-parent family. The child does not interact with children of his age. Lives in a neighborhood with a high crime rate.
4	Biological risk (normal delivery with breech presentation and perinatal asphyxia )	Absence of deficiencies in the body structure.	In supine, keeps head oriented in midline, joins hands above chest, reaches for objects. In prone, maintains weight support in the forearm, elevates and supports the head for a few seconds. Standing, keeps her head in line with her body. She goes on late-afternoon walks with her mother.	In the supine position, maintains abduction and external rotation of the hips, flexion of the knees, dorsiflexion and ankle eversion. Less active lower limbs. Can remain, for a short period, with weight bearing on the upper limbs and thoracic kyphosis.	Four months. Female. Cheerful, but easily irritated. Positive environmental characteristics (facilitators): Educated and participative parents, access to health services. Frequent aquatic stimulation (once a week). Evening outings. Negative environmental characteristics (barriers): dimensions of the house limited for play.
5	ADNPM Psychomotor developmental delay	Absence of deficiencies in the body structure.	Pulls himself up to a standing position. Walks sideways. Makes transfers. Plays.	Does not walk independently. Does not speak. Does not interact with other children.	11 months. Male. Good-natured. Positive environmental characteristics (facilitators): nuclear family composed of father and mother, minimal financial conditions. Negative environmental characteristics (barriers): poor home environment in stimuli. Does not live with other children or adults.

Child	Week 1	Week 2	Week 3 to 6	Week 7
1	Parents’ main complaint: "My child has difficulty standing and does not take steps, even when supported."	- Mutually agreed goals: “get the child to stand up from sitting on the floor and increase the time in orthostatism.” - The family established moments in the routine to stimulate the child. - They suggested games that encourage the child to reach the goals, such as placing toys at different heights so that the child tries to move to standing from sitting on the floor. They also encouraged the standing position during the bath.	- Main difficulty for parents: failing to support the child during position transfer. - Main facilities for parents: they allowed the child to try and make mistakes during the process. They understood that the child needed less support than was provided for position transfer. They motivated the child. The activities were varied and in different contexts. The parents built and acquired toys that helped to stimulate the achievement of goals and showed more autonomy in care and greater understanding of the child's condition over the weeks.	- In the evaluation shared with the parents, an improvement was observed in the child’s ability to pull himself to a standing position from the buddha sitting position, in addition to greater interest of the child in playing in the standing position. - Parents recognized advances in their child's motor performance. - Parents stated that they were less overprotective and more patient in waiting for the child to respond to activities, in addition to having a better understanding of their child's health condition.
2	Mother's main complaint: “I would like my child to have an improvement in sitting balance and stay in that position longer.”	- Mutually agreed goals: make the child stay in the sitting position longer, with as little support as possible, and improve alignment in the position. - The mother established moments in the routine to stimulate the child during daily care activities and during play. -The students helped the mother to think about how to overcome the limitations she presented so that she could have ideas for games to be developed with her child, until the mother suggested building a sensory mat for the child and suggested encouraging her to sit on a step, with her feet supported.	- Mother's main difficulty: maintaining the child's alignment in the sitting position. Due to low visual and auditory acuity, the mother reported difficulties in stimulating the child. - Main facilities of the mother: very attentive to the child’s routine and in the implementation of stimuli as she learned more about the child’s health condition. She made rugs with different textures so that the child could be stimulated in the position of all fours, on the mother’s legs, and, thus, improve the activation of the spine muscles and the child's head control. - Over the weeks, the difficulties initially reported ceased to exist and the mother was more empowered and assertive in playing with her child.	- In the assessment shared with the mother, there was an improvement in the child's balance in the sitting position, which enabled him to considerably increase playing time without becoming destabilized, going from a few seconds (in the pre-intervention assessment) to a few minutes (in the post-intervention assessment). - The mother stated that she was more confident in the decisions made in relation to her son and easily perceived his greater interaction with her and with his younger sister, who was being involved in the games developed with her brother.
3	Mother's main complaint: “I wanted my son to firm up his body more and put food in his mouth by himself.”	- Mutually agreed goals: to provide opportunities for the child to feed himself, giving him the necessary time. Play with the child on more stable surfaces to encourage better head and trunk control. - The mother was initially afraid to make suggestions as to moments in her routine when she could stimulate her child. - The students conducted the visit/treatment in order to eliminate hierarchies. - After understanding that the one who has the most knowledge about the child's health is herself, the mother was able to define, together with the students, the games to be played to stimulate the child and the best moments within the routine. A board with the routine was fixed on the wall of the house to help the mother remember.	Main difficulties encountered by the mother: she was initially unable to develop activities, which made her feel discouraged with the approach. Main facilities: the mother was able to see the child's progress as she overcame the difficulties in giving him time to perform the tasks, so she became more participative and more motivated during the following sessions. The child's older sister was included in her brother's routine in order to contribute with games that stimulated him. - A clothesline of photos with the child in different positions and with encouraging phrases was prepared by the group of students to give visual stimuli to the family.	- In the evaluation shared with the child's mother and sister, it was observed that he spent more time in the sitting position with the support of his hands and presented better control of the head and trunk (from 5 seconds to almost 2 minutes). When stimulated, the child began to pivot to reach objects. As for putting food in the mouth, it was agreed with the family that the child needed more opportunities to explore food and be able to put it in his mouth. - Over the weeks, the mother and sister were more participative in activities with the child and more open to talking about their anxieties with the students. - The family was motivated not to give up encouraging the child in the first attempts at a new game, since the child needed trials and errors, and training was necessary for the proposed task to be carried out.
4	Parent’s main complaint: “My daughter moves her legs little compared to other children.”	- Mutually agreed goals: reach the feet in the supine position. Stimulate the child in the absence of the ecological cloth diaper to facilitate performance in the activity, since it was previously observed that the volume of the diaper made it difficult for the child to move.³²32 Cole WG, Lingeman JM, Adolph KE. Go naked: diapers affect infant walking. Dev Sci. 2012;15(6):783-90. DOI DOI... - Moments were established within the family's routine so that the child was stimulated, including during diaper changes, as suggested by the parents.	- Parents' main difficulty: the child's irritability in some postures made it difficult to carry out certain activities designed by the parents. - Main facilities: parents engaged in relation to different ways of stimulating the child. To overcome the child's irritability, the parents introduced musical resources, which enabled the daughter to remain calmer and stay longer in the postures defined for stimulation. - As the weeks went by, the child showed progress in motor development and new goals were set with the parents, such as playing longer in the prone position and, subsequently, stimulating the child in the cat position and to pull herself to a standing position.	-In the evaluation shared with the parents, there was an improvement in the child's gross motor performance with improvement in active movement of the lower limbs in all postures, good performance in rolling over, sitting without support, and in the use of the hands to reach and manipulate toys in the position. - Parents were even more engaged and assertive about ways to stimulate the child. - The mother stated that she was calmer about the child's condition, as she began to understand her condition better, and said that she understood that it was necessary to allow time for the daughter to respond to stimuli, which greatly reduced anxiety and fears about the child's future.
5	Parents' Chief Complaint: “We want our child to take his first steps.”	- Mutually agreed goal: make the child pull himself to his feet, encourage the child to stay longer in orthostatism, promote anterior gait with the help of toys. - The parents, with the help of the students, identified factors that facilitated and hindered the performance of activities by the child. - The parents determined moments in the routine when they could play with the child, in order to achieve the goals and use facilitating elements to carry out the activities.	- Main difficulties for parents: establishing, within the routine, a time to play with the child during the week that could be effectively accomplished. They reported difficulty in meeting the goals agreed with the students. - Main facilities: as the sessions progressed, the parents became more creative in stimulating the child and began to try to overcome difficulties.	- In the evaluation shared with the parents, they mentioned that they realized the importance of letting the child play on the floor longer and how much their participation in games made the child more motivated and made him/her stay on his/her feet longer. - The parents, despite leaving the child a little freer to play on the floor, remained overprotective until the end of the visits. At the end of the treatment, the environment had more stimuli for the child and the parents adapted a stroller so that the child could push it and steps were encouraged.

	Child 4		Child 5
	Pre-intervention	Post-intervention	Pre-intervention	Post-intervention
Prone	4	8	21	21
Supine	6	8	9	9
Sitting	3	10	12	12
Standing	2	3	7	10
Total score	15	29	49	52
Percentile	< 25	50	10	10

Child	Family report	Student group report
1	“I understood better what to expect or not from my son, and how I could contribute to his development”.	“The experience of participating in a family-centered home care program was rewarding and important to our academic background. Knowing the environment where the child lives, their routine, and their families helped us create a clinical perspective on the most diverse situations in everyday life, and to find simple ways to solve possible small problems when we know the environment where the family lives.”
2	“I enjoyed the experience and thought my son was getting better.”	“The experience was gratifying, as it was our first contact with a pediatric patient; it enabled us to learn a lot. The child's improvement at the end was clear and gratifying and we were very proud of our work. Unfortunately, the location of the child's house made it somewhat difficult; due to the rains and very hot sun, we had a bit of trouble.”
3	“I was very happy with the evolution of my son, and I understood that it is very important to offer stimuli to the child.”	“We found the experience interesting, as it is a way of closely observing a child who has a certain health condition and developmental delay as a consequence, thus enabling us to have a better idea of how to deal with these cases. Not forgetting also that the family-centered approach shows us that it is extremely important to know the personal, social, and environmental factors of the family, because only then will the care have stronger positive consequences for our patient and in this way his treatment will be effective.”
4	“I noticed an improvement in my daughter's performance, and I learned to take advantage of moments within my routine to stimulate her.”	“For us, being able to have a closer experience with a patient was beneficial, helping us in the relationship with the family and patient.”
5	“For us, being able to have a closer experience with a patient was beneficial, helping us in the relationship with the family and patient.”	“We observed that the intervention is extremely important for the child's development, not to mention that it strengthens the bonds between the parents and the child."

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[1] * Correspondence: rosane.morais@ufvjm.edu.br

First visit	1. Initial presentation: open and informal dialogue with parents, breaking any hierarchy. 2. Observation of familiar characteristics and resources in the home environment. 3. Collection of personal data and main complaint from parents. 4. Collection of the child's daily routine. 5. Assessment (AIMS or GMFM).
Second visit	1. Establishment of goals, parents and therapist together, based on the ICF activity domain. 2. Establishment of moments of activities between parents and children within the proposed objectives (completing the routine table with the new activities). The proposed activities must be within the daily care routine or in the moments reserved for parents to "play" with their children, that is, within parenting.
Third to sixth visit	From the third visit, in all sessions. 1. Inquiry of the following questions: - How have things been since our last visit? - What did your child like best? What was most difficult? - What did you (father/mother) like most? What was most difficult? - Has there been any change in your child's performance? - Do you have questions or concerns about carrying out the activities we have planned (play and self-care) for your family? - Do you think we should change the plan? - How do you think we should change the plan? 2. If necessary, adaptation of the approach based on the answers. 3. Observation of how the parents were “playing with the child” (within the proposed objectives). 4. Demonstration and suggestion, if necessary.
Seventh visit	1. Reassess the child using the GMFM or AIMS. 2. Collection of the family's experience report in relation to FCC.