”Love and patience is most important”

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UPPSALA UNIVERSITY

Department of Neuroscience Physiotherapy Programme Research Methodology IV Bachelor thesis 15 hp

”Love and patience is most important”

A qualitative interview study about the views and experiences from physical therapists working with orphan children diagnosed with cerebral palsy in Ho

Chi Minh City, Vietnam.

”Kärlek och tålamod är viktigast”

En kvalitativ intervjustudie om erfarenheter från fysioterapeuter som arbetar med barn diagnostiserade med cerebral pares i Ho Chi Minh City, Vietnam.

Writers:

Lidén, Frida Samuelson, Kajsa

Spring Term 2020

Mentor

Lena Zetterberg Lic. Physical therapist PhD

Department of Neuroscience Physical therapy

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Abstract

Background: Cerebral palsy (CP) is a diagnosis found worldwide. Literature indicates the importance of teaching families how to support the child. Orphan children are an exposed group and if the child also is diagnosed with CP the child is even more exposed. A literature search on how the lack of social support from close family, for example a child being

orphan, affects the physical therapy intervention for CP showed no results.

Purpose: The purpose of this bachelor thesis was to investigate views and experiences from physical therapists at “The Center of Rehabilitation and Support For Children With Disabilities”, Ho Chi Minh City, about their work with orphan children diagnosed with CP.

Method: A qualitative interview study with physical therapists working with orphan children diagnosed with CP. The data was collected through five semi-structured interviews.

Summary of result: The result was divided into four categories and 14 subcategories. The treatment for the orphan children was motor skill oriented and included a psychosocial view. “Love” was very important in physical therapy treatment, as a substitute for social support from close family. The participants had examples of obstacles and experiences on ways to overcome lack of social support.

Conclusion: The most prominent views and experiences from the physical therapists were to love the orphan children as their own and act in their professional roles in ways that compensate for strong social support. There is a need for more research in this area.

Keywords: Cerebral palsy, Orphan children, Physical therapy, Social support, Love

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Sammanfattning

Bakgrund: Cerebral pares (CP) är en diagnos som finns över hela världen. Litteratur och riktlinjer anger vikten av att lära familjer hur man kan stödja barnet. Föräldralösa barn är en utsatt grupp och om barnet också är diagnostiserat med CP är barnet ännu mer utsatt.

En litteratursökning om hur bristen på socialt stöd, till exempel ett barn som är föräldralöst, påverkar fysioterapeutisk behandling för CP visade inga resultat.

Syftet: Syftet med denna kandidatuppsats var att intervjua fysioterapeuter vid ”The Center for Rehabilitation and Support For Children with Disabilities” i Vietnam, Ho Chi Minh City, om erfarenheter av deras arbete med föräldralösa barn som har fått diagnosen CP.

Metod: En kvalitativ intervjustudie med fysioterapeuter som arbetade med föräldralösa barn diagnostiserade med CP. Datan samlades in genom fem semistrukturerade intervjuer.

Sammanfattning av resultatet: Resultatet delades in i fyra kategorier och 14

subkategorier. Behandlingen för de föräldralösa barnen var motorisk färdighetsorienterad och inkluderade ett psykosocialt perspektiv. ”Kärlek” var mycket viktigt i

fysioterapibehandlingen, som en ersättning för bristen av socialt stöd från nära familj.

Deltagarna hade exempel på hinder som uppkom men också erfarenheter av sätt att övervinna bristen på socialt stöd.

Slutsats: De mest framstående erfarenheterna från fysioterapeuterna var att älska de föräldralösa barnen som sina egna och agera som ett starkt socialt stöd. Det finns ett behov av ytterligare forskning inom detta område.

Keywords: Cerebral palsy, Orphan children, Physical therapy, Social support, Love

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Background

Introduction

World Confederation for Physical Therapy (WCPT) has a vision to uplift the important role of Physiotherapy and improving health and well-being worldwide. According to WCPT a physical therapist (PT) use a holistic, biopsychosocial perspective when helping people to maximize their quality of life [1].

Cerebral palsy is a diagnosis found worldwide. Literature and guidelines indicate the importance of teaching families how to support the child [2,3,4]. Children without a family, orphans, are to begin with an exposed group and if the child also is diagnosed with CP the child is even more exposed. There are eight million children across the world that despite having at least one living parent live in orphanages. According to an article from “The Guardian”, treatment at orphanages is old-fashioned, focusing solely on motoric treatment and neglect psychosocial factors e.g. essential personal support [5]. A literature search on how the lack of social support from parents or close family, for example a child being orphaned, affects the physical therapy intervention for CP showed no results.

One main benefit with Minor Field Studies (MFS) and Vietnam to be the chosen country for our bachelor thesis, is the already established cooperation with Phuong Luong, Project Manager in Regional Representative Office for Uppsala University in Ha Noi thanks to an earlier study [6] made within MFS in Vietnam. More studies also strengthen the likelihood of further collaborations between Vietnam and Sweden regarding physical therapy.

Cerebral palsy

Cerebral palsy is the most common reason for functional impairment among children resulting from injury to the developing brain [2,3]. According to a report from 2016, 2 per 1000 live births are diagnosed with CP [2,7]. In Vietnam, there are 500 000 people living with CP (8). CP is a non-progressive clinical syndrome, but the expression of the disease can

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change as the brain matures and it can differ between individuals [3]. In 2006 a group of scientists expanded the definition of the disease to:

“CP describes a group of permanent disorders of the development of movement and posture, causing activity limitations that are attributed to non-progressive disturbances that occurred in the developing fetal or infant brain. The motor disorders of CP are often accompanied by disturbances of sensations, perceptions, cognition, communication, and behaviour, by epilepsy, and by secondary musculoskeletal problems.” [2,3,9].

Aside from the fact that CP contributes to motoric consequences like lack of motor planning, impaired postural control, muscle weakness, muscle tone deviations, restricted mobility, joint defects, muscle contractures and pain, cerebral palsy can cause other disabilities like speech and language impairment, cognitive difficulties, vision problems or hearing

impairment. A child’s motor function is affected by e.g. age, environmental factors and social support. [10]

Cerebral palsy can be categorized into different subgroups based on the most dominating neurological symptom causing functional disability, e.g. muscle tone deviations. Each subgroup can therefore suffer from various symptoms. Surveillance of Cerebral Palsy in Europe (SCPE) present four subgroups: unilateral spasm CP, bilateral spasm CP, dyskinetic CP and atactic CP [2].

Physical therapy examination and treatment for cerebral palsy

To be able to offer the best rehabilitation, it is required to have good knowledge about the underlying causes to the disease and explanations to the symptoms that can occur. It is important to see the child as an individual whose motor function can vary between children as well as the child’s mental abilities [2].

The Gross Motor Function Classification System - Expanded & Revised, can be used in examination. It is a 5-level classification system used in North America and Western Europe to describe the gross motor function for children with cerebral palsy based on their self-

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initiated movement [11]. The World Health Organization (WHO) presents the International Classification of Functioning (ICF) to promote international communication between PT:s and other health workers. International Classification of Functioning highlights different components in physical therapeutic examination and intervention such as body function and body structure, activity and participation, environmental and personal factors. This means not only considering biological factors, but also social and psychological factors in treatment, using a salutogenic approach [12].

The overall goal with the physical therapy intervention is to promote function and ease disabilities for the children. Each child is unique and therefore the treatment should be adjusted to the needs of the individual child [2]. The European Journal of Physical and Rehabilitation Medicine gives recommendations for physiotherapy intervention for children diagnosed with CP based on three categories:

1. The patient’s functional profile

2. The abilities and/or activities in relation to the child’s age 3. The operating methods to be used [13]

The training methods most commonly used today in rehabilitation for children diagnosed with CP, also proved to give good results, are functional strength training, gait- and

movement training, passive stretch, contracture prophylaxis, orthoses, cognitive tasks and balance training. Evidence also suggests that the physical therapy intervention should be goal- and activity targeted to promote everyday chores [14].

There is currently no clear general evidence regarding frequency, duration or intensity for one session of the treatment, instead guidelines suggest taking the child’s age and ability into consideration when deciding on these issues. [2,13]. According to a study from 2015 there is no qualitative research on views and experiences from any group of participants on how activity, participation and quality of life gets affected for children with CP and

communication difficulties. “This in turn could lead to improved understanding of how activity and participation should be assessed and managed for this subgroup.” [15].

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Social support - the parent's role in the physical therapy treatment

Literature regarding CP and physical therapy intervention brings up the importance of social support, such as parents, for the children in treatment. Studies have shown that parents play an important role in rehabilitation, and it is important for PTs working with children with CP to create a strong bond and cooperation with the parents [2]. In ICF terms, parents are the central 'contextual factor' in their children's lives [16]. Parents play an important role to make sure the treatment is on-going even when not at the PT. Since the parents are a part of the child ́s everyday life, they can be a part of the rehabilitation and for example help their child with daily tasks and perform contracture prophylaxis every day at home. The PT shows and educate the parents how to provide support and practice on every day task at home, such as meals, getting dressed and other goal-oriented tasks. The parents should not be expected to act like a therapist, but they have a central role to play in their child’s rehabilitation [2, 13].

The Center of Rehabilitation and Support For Children With Disabilities in Vietnam The Center of Rehabilitation and Support For Children With Disabilities is located in the third district in Ho Chi Minh City. It was formed in 1978 under a different name, shortly after the end of the Vietnam war. Over the years as society and the needs for The Center of Rehabilitation changed, the name of the referral center did as well [17].

Today the center offers care, rehabilitation and training for disabled children, some of whom are also orphans and live in the center. The children have different conditions like CP and other motor difficulties, mental retardation and children with autism. The center has the possibility to have 120-150 children in care [17].

There are people with different professions working at the center, like PTs, speech therapists and other people with medical education. They have a physical therapy room, several classrooms and indoor playrooms. The people working at the center wants to make the life of every child as enjoyable as possible and to get these children integrated in society [17].

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Sustainable development goals and the World Confederation of Physical Therapy In the United Nations (UN) Agenda 2030 the Sustainable goal number three is formulated as follows: “Good health and well-being". A good health at all ages is the foundation to raise a thriving society, and a significant human right. Therefore, the agenda aims for everybody to have access to high standard health care. According to the UN agenda 2030, two things to do to help reach the goal are:

1) “You can raise awareness in your community about the importance of good health, healthy lifestyles as well as people’s right to quality health care services”

2) “Take action through schools, clubs, teams and organizations to promote better health for all, especially for the most vulnerable such as women and children” [18]

By visiting Vietnam and The Center of Rehabilitation and Support For Children With Disabilities to write our bachelor thesis, we aimed to contribute to raise awareness to PTs in Sweden about the health-care work in a country very different from ours. By raising awareness, we can promote better help to an exposed group of children, namely orphans diagnosed with CP or children that do not have enough support at home. This is also in line with the WCPT whose vision is to uplift the important role of physical therapy in improving health and well-being. The WCPT wants to – besides action that contributes to goal three – unite the profession internationally [19].

Problem statement

Cerebral palsy is the most common neurologic disability among children worldwide [3].

Studies show that physical activity plays an important role in treatment [2]. Furthermore, researchers have found that the parents' role is important in the treatment, as social support but also as a provider of the treatment when the PT is not present (2,13,16). An article states that personal/social support is neglected in treatment at orphanages [5] and research promotes more qualitative studies regarding children with CP [15]. Therefore, there is a need to fill the gap of knowledge about how lack of social support, for example a child being orphan, affects the physical therapy intervention for a child diagnosed with CP.

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Views and experiences about how the lack of social support – not only the importance of social support – affects the treatment of the child from a physical therapy view, is valuable for PTs worldwide in their planning of effective treatments to help orient themselves among abstract guidelines [2,13]. Therefore, this research is also transferable to the Swedish medical system.

Purpose & research question

The purpose of this bachelor thesis was to investigate views and experiences from PTs at The Center of Rehabilitation and Support For Children With Disabilities in Vietnam, Ho Chi Minh City, about their work with orphan children diagnosed with CP.

Research question: What are the views and experiences from the Physical therapists working at The Center of Rehabilitation and Support For Children With Disabilities with orphan children diagnosed with Cerebral palsy?

Method

Contacts in Vietnam

The authors reached out to Phuong Luong, Project Manager in the Regional Representative Office for Uppsala University in Ha Noi. She is the administrator for the Unit of International Cooperation and has been a part of Uppsala University since 2015. Phuong Luong gave us various suggestions on diagnoses and places in Vietnam where a study like this bachelor thesis could be performed, thereof the interest for The Center of Rehabilitation and Support For Children With Disabilities. She also helped the authors to contact Minh Nguyen Ngoc and colleagues including Liên Nguyen, whom are working at Ho Chi Minh University of Medicine and Pharmacy. Liên Nguyen, lecturer at the Physiotherapy department, and Minh Nguyen Ngoc have been helpful in various ways, like providing information about The Center of Rehabilitation and Support For Children With Disabilities.

Liên Nguyen accepted to be the contact person in Vietnam as well as the contact person between The Center of Rehabilitation and Support For Children With Disabilities and us.

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When the second draft of the memorandum was done, it was sent to Liên Nguyen so she and the center could take part of the details.

Design

In this bachelor thesis, the aim was to describe views and experiences from the PTs at the Center of Rehabilitation and Support For Children With Disabilities. For this a qualitative interview study was the best choice. The design fits the research question since the purpose was to investigate an area with limited literature, and describe views and experiences, which cannot be described with statistic data. In a qualitative interview study, the number of participants is often smaller than in a quantitative study, but the investigation digs deeper into the issue than in a quantitative study. Therefore there are not the same possibilities to generalize the result, but the data is instead described in so-called

“qualities”, such as words and descriptions (20).

An inductive research process was used, meaning that one tries to conclude by the data or observations one collects rather than emanate from a hypothesis as in a deductive process.

In a design like this, the researchers played an important role. The researcher collected and interpreted data, which caused the design to be more subjective than for example an

experiment. The research process started with literature reviews, followed by data collection, data analysis, collocation of results and ended with a discussion where the results and earlier knowledge was compared [20].

Sample

The participants in this study were selected by convenience sampling (21). Since this study took place abroad and few PTs were available at the center this was the best choice. Six PTs was needed for this study, one PT for a try-out interview and five for the data collection.

Due to circumstances in the country regarding develop of the Covid-19 virus which lead to less resources at the center, there were only five PTs available, accepted and chosen by the head manager of the rehabilitation department. Therefore, the try-out interview never took place, else than with the interviewers.

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Inclusion criterion: PTs working with orphan children under 18 years diagnosed with CP and being treated at The Center of Rehabilitation and Support For Children With

Disabilities. PTs working with both orphan children and children with parents.

Exclusion criterion: Therapists with other specialties within medicine. PTs working only with orphan children or only with children with parents.

Data collection

The data was collected through semi-structured interviews. Semi-structured interviews allowed the authors to ask follow-up questions and gave the participant a chance to narrate as much as possible without being controlled by many detailed questions (20).

The interviews were based on an interview guide (appendix 1). They were held at The Center of Rehabilitation and Support For Children With Disabilities, in a separate room.

Five interviews were completed and both authors were present at all of them together with two interpreters, to secure the languages quality as the interviews were held in English. The interpreters were both present at all interviews and took turn of having the main

responsible for the translation while the other acted as a support. The interpreters were asked to translate as precise as possible, avoid summaries and translate in short sentences.

Execution

This field study took place during the 10^th - 19^th of February 2020, at The Center of

Rehabilitation and Support For Children With Disabilities in Ho Chi Minh City in Vietnam.

All the interviews were done together by the authors. One had the primary responsibility and lead at every interview. The other author observed and filled in with follow-up questions if needed. The participant needed to sign a written consent before entering the field study (appendix 2). The interviews was recorded with a private password protected cell phone and lasted for approximately 30 minutes. Liên Nguyen helped the authors to come in contact with two interpreters, which was two of her students studying English and medicine.

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Before departure to Vietnam a written consent form “Approval for the study from the head manager” (appendix 3) was produced and approved by the head manager of The Center of Rehabilitation and Support For Children With Disabilities. An information letter (appendix 4) was given to the director of the center and the head manager of the department before initiating the field study. The two interpreters signed consent to professional secrecy before the interviews started (appendix 5).

Data processing

The interviews in this study were analysed with a qualitative inductive narrative/content analysis. The audio recordings of the interviews were transcribed literally. Some parts of the interview were irrelevant to the thesis due to language limitations and were excluded from the transcription together with comments on what had been deleted. All the

interviews were transcripted jointly to secure the understanding of the interpretation. All the transcriptions were read individually to seek and identify important aspects like

patterns, conformity or differences in the interviews and later the findings were compared.

The analysis consisted of different phases where the transcribed data was disassembled and further on coded. This was helpful for identification of different topics, similarities or other differences. The coding helped to form categories, so the findings could be presented in a coherent and meaningful way (21). An example of the analytic process is shown in table 1.

To secure credibility and transferability in the study the authors used investigator triangulation with the tutor. Investigator triangulation means involving different

researchers in the analytical process. This method was used to bring new perspectives to the data analyse from an objective part (22).

To verify the conclusion, multiple reaches were used when coding the transcripted data.

Furthermore, the data were also verified by a verbal summary after each interview to give the participants a chance to correct or clarify themselves in their own interview (20).

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Table 1: Example of the analytical process

Content analytical unit

Condensed content

analytical unit Code Subcategory Category

“She feel the children, they need to love cause they don’t have the love from their family. She will give ah, and you will

give ah them, she will give the love by holding and ehh… Eum… strong…

and strike. And and because the, children don’t don’t have contact

from their family, and hold and when you hold the children, the children

will be like very happy.

They like holding.”

She feel the children, they need

to love cause they don’t have the love

from their family.

She will give the love by holding

and strike.

Because the, children don’t have contact from their family. When

you hold the children, the children will be very happy. They

like holding

Orphan children needs love and human contact to be

happy

PT must show the children love

to do a good job

The importance of love in physical therapy

treatment

Ethical considerations and benefits of the study

The participation in this study was voluntary and the participants received both written and verbal information about the study and their participation. The information contained facts about anonymity and confidentiality of the participants, that the study was optional and about the right to drop out or repeal the participation at any given point without any further explanation. The participants had to read and sign a consent form before

participating in the study, The interviews were recorded with a private password protected cell phone, furthermore the information contained facts about how the interviews were saved and in what way they were used and published. The recorded interviews were erased from the phone after being transferred to a private password protected computer, where

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they were saved and named with a code for the sake of preserving anonymity. When the bachelor thesis was finished and published the files were erased from the computer.

There were aspects and challenges to consider when doing a qualitative study. There was the risk of cultural differences, intrusion on privacy or misrepresentations. There was also a risk that the questions asked could be perceived as too sensitive to talk about or arouse emotions. According to Liên Nguyen, working with children, especially children with disabilities or diseases at The Center of Rehabilitation and Support For Children With Disabilities in Vietnam was a sensitive subject. This was very important when it came to the phrasing of the questions in the interview, the environment of the interviews – private rooms where the participants could speak in peace without disturbance. An article regarding ethical challenges in qualitative studies brings up inter alia the importance of having an appropriate structured planning when executing fieldworks that can be potential emotional challenging [23]. We believed, after considering the risks, that the benefits from this study exceeded the possible risks.

Results/outcome

Description of the participants

The participants in this study were all PTs working at the Center of Rehabilitation and Support for Children with Disabilities. They were all females and had the same working hours. They had worked at the center minimum 10 months, and had various experience regarding previous work. The participants are described in table 2.

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Table 2: description of the participants in the study. The number in the parenthesis describes how many participants out of five

Gender

Working hours

Time working at the center

Previous experience of working with

children

Previous experience of working with cerebral palsy

Previous experience of working with

orphans Female (5) 7-11 and

13-16.30 (5)

Between: 10 months - 9 years

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“Yes, practise in school” (3) and “No” (2)

“Yes, practise in school” (4) and “No” (1)

No (5)

After the analysis process four categories and 14 subcategories were formed. These are presented in the table (table 3) below and further explained in detail with quotes from the participants. The quotes are directly from the participants through the interpreter.

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Table 3: Categories and subcategories

Categories Subcategories

Physical therapy treatment for motor skills*

Motor skill oriented treatment

Adjusted motor skill treatment Safety thinking in motor skill treatment

Psychosocial physical therapy treatment*

A holistic view is important in physical therapy treatment

Understanding the child as an individual and her emotions

Development is individual and is partly effective by cognitive skills

Challenging views due to lack of social support

The importance of love in physical therapy treatment*

Children with no parents need love

PT must show the children love to do a good job Outcomes of love in treatment

Experiences on ways to overcome the lack of social support*

Obstacles when working with orphan children diagnosed with CP*

Problem solving when working with orphan children diagnosed with CP*

How to work successfully with orphan children diagnosed with CP as a PT*

Outcomes of a successful treatment

*at the Center of Rehabilitation and Support for Children with Disabilities

Physical therapy treatment for motor skills

This category is about motor skill treatment, which was a part of the work the PT does at the center.

Motor skill oriented treatment

The analysis showed that the treatment at the center was motor skill oriented with regular training on daily activities such as eating and walking. Other parts in motor skill treatment were passive movement, learning how to sit and crawl and play with ball. “Guide the children how to walk, to crawl /.../ walking upstairs and down the stairs. /.../ Do the exercise

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on the big ball and weight barring.” (Participant 3). Use of assistant tools such as orthosis and neck collar was common. The goal for the orphan children was to develop in motor skills but if not the goal changed into maintaining the orphan child's abilities. “If the children don´t develop she do the exercise to maintain the able of the children” (Participant 4). The treatment was the same whether the child had parents or not, but the orphan children lacked the opportunity for home exercises.

Adjusted motor skill treatment

The training and the orphan child's motor skill were after 3-6 months evaluated by a doctor. “Assessment with the doctor 3...6 months make again”. (Participant 1). The doctor then decided the overall treatment, as the treatment was decided by the grade of brain injury and ability of the child. It was the role of the PT to set interim goals and adjust the treatment for the orphan child to reach the long-term goal. “Exercise follow the order from the doctor /…/. She can degree the hard of the exercise if the children react, don’t like the exercise, so she just do the step by step or slowly.” (Participant 5).

Safety in motor skill treatment

According to the analysis PTs in the center considered the safety aspect in motor skill treatment. Examples of this was to work closely with one child at a time, keep alert to avoid and operate an epileptic attack, and use of tools to prevent orphan children from hurting themselves during training. “Control the hip of the children or stand close to her or grip the bar. She also use some device like walking table.” (Participant 5). The analysis also showed that the PT considered the risk of immobilisation for the orphan children, which could cause muscle hypotrophy. “If the children, the development just lie down, she thinks and avoid the muscle become smaller.” (Participant 4).

Psychosocial view in physical therapy treatment

This category is about the importance of including psychological views in physical therapy treatment.

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A holistic view is important

The analysis showed that an orphan child needs more than motor skill exercise in

treatment. The treatment should also combine aspects such as nutrition and psychological factors. If the orphan child doesn’t develop as planned an arousal of emotions, like

frustration, can occur for both the orphan child and the PT. The PT must put her emotions aside for the benefit of the orphan child since the PT is much needed if the child is

disappointed on herself and don´t have any family to turn to. A holistic view aimed to optimize the physical treatment for the orphan child. “She say the difficult, she [PT] feel a little upset, a little disappointed, but she says when working with children we must give the loving, give them more love so she don’t feel upset”. (Participant 5).

Understanding the child as an individual and her emotions

Every child is an individual with her own emotions and needs, which guided the treatment.

The analysis showed that it took time to get to know the orphan children at the center.

Understanding the orphan child and her emotions was important to be able to give the right exercise. “She observe the children detail and she understand the psycho of the children and she can give the right exercise exactly.” (Participant 1). The PT avoided the exercise the child didn’t like, since it was easier and more successful to do the exercise when the child was happy. The PT followed the orphan child’s emotions and made the exercise harder or easier depending on the child's mood. “She work with the children, she observes their emotions in the face of the children, so she can degree the hard of the exercise” (Participant 5). PT had good experiences from adjusting the treatment to what the orphan child needed

emotionally.

Development is individual and is partly affected by cognitive skills

The analysis showed that the development of motor skill is individual but most determined by the grade of the brain injury. Improvement took long time and some children stopped developing after a while. If two children had the same grade of brain injury, the child with parents would develop more due to better communication skills. This would make the connection between PT and the child easier, which would make the treatment more effective. “The method for motor, motor skill is the same but the communication is different

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for the orphan children can’t /.../ connect more because they don’t have the parents”

(Participant 2). Orphan children got less time for playing and by that grow cognitive skills since they didn’t have parents to act as social support at home. “The children have parents can be talk with the children can be holding and orphan don’t have this. And it affect for a long time.” (Participant 4).

Challenging views due to lack of social support

Social support was important in long term. According to the analysis the lack of opportunity for motor skill home exercises affected the children with no parents. “The CP children must have three helping resources. She have /.../ helping from the doctor, the PT and from the family. And the orphan children don’t have the helping from the family. If two children in the same disorder, but the children with parents will be held more, will be happy and connect more and do the exercise more because /.../ the family do the exercise in home.” (Participant 5).

The importance of love in physical therapy treatment

This category is about how love for the orphan children is included in treatment in different ways.

Children with no parents need love

According to the analysis the orphan children lacked love and social support from a family.

Orphan children with CP needed love and support. “She feel the children, they need to love cause they don’t have the love from their family.” (Participant 3).

PT must show the children love to do a good job

The analysis showed when working with orphan children, love and patience were the most important factors and also necessary to do a good job. Without love the treatment would not be successful. “Love and patience is more important. It is very important eh when she work with the children”. (Participant 4). The orphans children got love from the PTs which could be shown through hugs and touch. It was also important not to do any harm for the orphan children. “She will give she will the love by holding /.../ and strike. When you hold the children, the children will be very happy. They like holding.” (Participant 3).

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Outcomes of love in treatment

Love for the orphan children took time to develop. Without love the exercise would be harder. The analysis showed that mutual love between PT and child builded trust and eased communication. “She says when she love the children the children has familiar and the

children will follow with the guide of the PT. They just want to do exercise with her. /.../ The children have some behaviour like “yeah”, a smile, are waving and this show her how the children love her to. And the children will follow with the guide.” (Participant 3). It also gave the PTs more motivation when the orphan children loved them. “The baby happy and smile so her mood is high and then she have more powerful for them.” (Participant 4).

Experiences on ways to overcome the lack of social support

This category is about experience from PTs on how they handle adversity and what they believed was most important for successful treatment

Obstacles when working with orphan children diagnosed with CP

The analysis showed that there are many obstacles to concur as a PT working with orphan children. It was exhausting work were the PT must be patience and work as a strong support for the orphan children. If the child arrived at the center when in high age it was harder for the PT to get to know the child and build trust. “She have a lot of difficult in the treatment. Like if the children when come here is high age, and she have a bad behaviour and she cant control it.” (Participant 1). Other obstacles that the PT’s also presented solutions for were lack of control in treatment such as if the orphan child was upset and did not follow guiding, communication problem and that the job included dealing with unpleasant tasks like handling if the child peed on the floor during exercises. “The smell of their breath is so bad and the children always crying. /.../.When they do the exercise some children is peeing on the floor and the PT must have clean this floor.” (Participant 3). One problem that did not have a solution was nevertheless the time for the orphan child, which always was to little.

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Problem solving when working with orphan children diagnosed with CP

According to the analysis setting interim goals pointed towards behaviour, degree

treatment and taking extra time for the orphan child who needs it, were solutions for lack of control in treatment when the child was upset or had bad behaviour. “One children have 30 minutes for exercise. But when spend more time do the exercise in the afternoon /.../ the orphan children two times a day. /.../ If the children can’t reach the goal, she degree the goal.”

(Participant 3). If the orphan child lacked verbal communication skills, alternative communication like facial expression and body language were used. “She know how to communication with the children.” (Participant 2). Combining help from colleagues, loving the children like their own and having the mind-set of letting the children be children eased handling unpleasant tasks. “She says the children like her daughter, her son, her daughter and she loves the children.” (Participant 3). Other general solutions were following order from doctor and study more about the profession.

How to work successfully with orphan children as a PT

The work as a PT was successful when setting individually interim goals, graded treatment and working methodically. Human contact was soothing for children and helps build trust.

Trust makes the orphan children attached to the PT, which supported compliance for treatment. “The baby 18 months. She is far from her mother and she usually cry so the PT help her combine motor and psychological, and held her. /.../. She do exercise for her can sit on the chair, next she help her can stand, do balance. /.../. And now she can walking.” (Participant 2).

Other factors for compliance were PT following the mood of the child for the specific day and using rewards for good outcomes. The analysis also showed that following the official protocol was important for a successful treatment.

Outcomes of a successful treatment

The analysis showed that a successful treatment helped to build independence and

confidence for the orphan child. It also brought joy for the PT and the child. “If achieve her goal the baby happy when she can crawl and walking. The baby very happy so the PT happy to.” (Participant 4).

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Discussion

Summary of the results

Four categories and 14 subcategories were formed after the analytical process, which captured the most important views and experiences from the participants. The treatment for the orphan children was motor skill oriented but based on experiences it was important to include a holistic view in treatment. This meant understanding the orphan child as an individual and her emotions. The analysis showed that the factor “love” from the PT to the orphan child was very important in physical therapy treatment, as a substitute for social support from close family. The participants had examples of obstacles to concur but also experiences on ways to overcome the lack of social support.

Discussion of the results

The motor skill treatment described by the participant included regular training on daily activities such as eating and walking, passive movement, learning how to sit and crawl and play with ball, common use of assistant tools such as orthosis and neck collar. According to literature mentioning the rehabilitation for children diagnosed with CP, this sort of physical therapy intervention is strengthened by evidence [14]. The participants set individual interim goals in treatment and adjust the session depending on the child's abilities, which is also suggested by guidelines since there is no clear evidence regarding frequency, duration or intensity for treatment [2, 13,14].

The participants described how they used a holistic approach in their physical therapy intervention for orphan children diagnosed with CP. According to an article from Journal of Multidisciplinary Healthcare (2016) motor skills are attributed as more important than other aspects such as emotions and motivation. The article suggest that psychological aspects are vital for the well-being, which is why every individual diagnosed with CP must be treated as “an active player, and not as a passive recipient of care.” [24]. These arguments are comparable with the result of this study, since the emotions of the orphan children were considered by the participants as important to be able to give the right exercise at the

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specific occasion. The PTs at the center also cater to the emotions and mood of the orphan children in order for compliance.

Furthermore, a three-way relationship by the child diagnosed with CP, the therapist and the family are considered vital for a successful outcome [24]. The participants used the same reasoning as the article where the orphan children did not have the same prerequisites for improvement compared to a child with parents, although the grade of brain injury is the most determine part of development. Due to the lack of social support, the PTs experienced that the orphan children lacked some cognitive skills in communication. Communication difficulties made the treatment less effective.

Studies show that parents are a contextual factor in the rehabilitation for children with CP and the social support from family is important for the development of a child diagnosed with CP [2,12,13,16,24]. No previous studies show how the physical therapy intervention gets affected if the child diagnosed with CP is orphan, but the results in this study show that orphan children need love in order to be able to benefit from and respond to the therapy, and the PT therefore must give the children love. There are similarities from this reasoning appearing in “attachment theory”. This theory argues that the parent-child relationship is important for a child's well-being [25]. Children with no parents lack this relationship, meaning the PT in this case need to take the role as a parent to sustain the well-being of the child. Love, which builds trust, is crucial for the success of the treatment. PT experienced that when the orphan children and PT loved each other they can communicate even though the child lack the communication skill a child with parents have. In contrary to what the article from The Guardian states regarding treatment in orphanages to be old-fashioned, the PTs at the center put a lot of care in the essential personal support [5].

Many of the factors of success mentioned by the participants are already established in the physical therapy community according to the authors. One of them is setting interim goals for the child in treatment. A study from 2018 proves that setting goals, in that study SMART approach, strengthen the likelihood for successful outcome [26]. The participants in this field study did not formulate their goal setting as “SMART approach”, but their method was

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to set individual, achievable and relevant goals pointed towards both motor skill and behaviour. The authors find this to be comparable to the SMART approach, since both methods showed that setting goals is successful in treatment.

Other successful factors mentioned by the participants were taking extra time for the child that needed it, give human contact and care for the emotions of the children. A study from 2020 shows that working family-centred, meeting the children’s’ needs and focusing on a structured treatment session helped the children “improve more than expected” and at the same time “a focus on health and well-being was positively associated with participation”

[27]. The participants in this field study worked with orphan children, therefore family- centred care is not relevant to this discussion, but just like the study from 2020, the participants considered “meet the children´s need” and “focus on a structured treatment session” to be important for compliance and a successful treatment.

Discussion of the method

Triangulation is one of few methods to be used to secure credibility in qualitative studies [22]. The authors discussed the formulation and content of the subcategories and the categories together with their tutor. Triangulation gave the authors an objective view from an experienced researcher who brought new perspectives to the data analysis. Discussion about interpretations caused by prejudice was also held during the analytic process with the aim to keep an objective approach through the whole study.

The use of semi-structured interviews gave the possibility to ask follow-up questions and learn more about the views and experiences from the participants. The authors got more detailed information and a chance for the participants to further explain, compared to for example a survey. The data collection was eased by the fact that this study was executed at a particular location, since all participants received the same amount of designated time within their working hours to do the interview.

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Another strength of this field study was that the analytic process was done separately and then compared, so the findings could be presented in a coherent and meaningful way. This method allowed the authors to lift different views, discuss interpretations caused by prejudice and be able to present more substantiated results.

The authors have not transcribed and analysed semi-structured interviews before. This could affect the results due to loss of important or underlying information, which the authors did not detect, and therefore could not present. There was also the aspect when working with interpreters and doing a study in the authors second language, that some information got lost in the translation. This is also an example of the ethical considerations the authors have to acknowledge. When working with interpreters the authors could only use the data that was presented through the interpreter. Receiving information second hand increases the risk that the participants views and experiences were presented

differently than they intended to. To secure the best translation possible, the authors tried to hire a professional interpreter instead of two English university students, but due to the Covid-19 outbreak this was not possible.

According to a systematic methodological study from 2016 regarding how to structurally produce a semi-structured interview, one of five steps involves a pilot-testing interview. For the trustworthiness and objectivity of the study, all steps should be performed [28]. The authors lacked opportunity for pilot testing the interview guide, which could have led to the primary interview being less informative. Lastly, a semi-structured interview guide makes it harder to re-do the study, since the follow-up questions differ.

Clinical relevance and future research

Orphanage does not exist in Sweden. Therefor the transferability is in need of a discussion.

From the author´s own experience the analysis showed similarities to what is educated in the physical therapy programme at Uppsala University. The most important result was the emphasis in the orphanage on the value to love and get to know the child as a therapist, and ambition and determination to be a strong social support since the child lacks that in other terms. The authors therefore believe that the results from this field study is transferable to

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the medical system in Sweden since not every child has a family who can be a strong social support, for example socioeconomically factors or abuse. Learning from PTs who is working with orphan children with CP every day is for that reason a great knowledge exchange.

This field study shows the importance of dedicating time to get to know the child, in order to provide health and well-being to the child for a successful treatment, which is also strengthened by research [27]. One way to transfer knowledge from the study to clinics in Sweden is therefore to value the emotional connection between PT and the child, for a successful outcome. It is furthermore beneficial to share the experiences about physical therapy intervention as a treatment for children diagnosed with CP, and in addition to that share knowledge and clinical experiences about different patient groups such as children being orphans. With this study we were interested in if- and how the lack of close social support affects the treatment and how the PTs work around that obstacle. Knowledge about how the lack of social support – not only the importance of social support – affects the child is valuable for PTs in their planning of effective treatments. The authors believe that there are still too few studies in this area, and future research with a larger sample and study material than in this field study, is required to induce substantiated recommendations and guidelines.

Conclusion

The most prominent views and experiences from the PTs regarding how to succeed with physical therapy treatment with orphan children diagnosed with Cerebral Palsy were to love the orphan children as their own and act like a strong social support. The PTs claimed, in accordance with research [2,12,13,16,24,27], that social support is an important building stone in treatment. By dedicating time with the orphan children to get to know them

enough to understand their emotions, a strong connection between the PT and the child was created. The analysis argues that this is crucial for a successful motor skill treatment, since the psychosocial view in treatment benefited the physical. This area is still in need of further research.

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Acknowledgement

We would like to thank Phoung Loung, Project Manager in Regional Representative Office for Uppsala University in Ha Noi, Minh Nguyen Ngoc and Liên Nguyen at Ho Chi Minh University of Medicine and Pharmacy, Head manager and all staff at the Center of

Rehabilitation and Support for Disabled Children, and Study Principal Lena Zetterberg at Uppsala University for making this project possible. Without you and your big help this thesis would not been possible. Many, many thanks. Xai cảm ơn!

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Appendix

Appendix 1 Interview guide

Estimated time for the interview will be 45-60 minutes, with room for a short break if needed by the participant. The participant can at any given time withdraw their

participation without any special reason. Question 1-5 is descriptive questions with the intention to give us background information about the participant, and question 6 - 12 is the main part of the interview with the purpose to answer our research question. Before the interview start, the participant will be asked if he/she have any questions.

1. Do you have any previous experience of working with children as a Physiotherapist?

2. Do you have any previous experience of working with cerebral palsy as a Physiotherapist?

3. Do you have any previous experience of working with orphans as a Physiotherapist?

4. How long have you been working at the Center for Rehabilitation and Support For Disabled Children?

5. What is your role at the Center for Rehabilitation and Support For Disabled Children?

6. Can you tell us about how a regular day at the Center for Rehabilitation and Support For Disabled Children look like as a physiotherapist working with the orphan

children diagnosed with cerebral palsy?

7. Can you tell us about your work at the Center for Rehabilitation and Support For Disabled Children with the orphan children diagnosed with cerebral palsy?

- Can you tell us about treatment do you give the orphan children with cerebral palsy at the Center for Rehabilitation and Support For Disabled Children?

What are your reasoning behind it?

8. Can you tell us about the experiences you have with the treatment you give the orphan children diagnosed with cerebral palsy?

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- Can you tell us about any good examples? What made it successful?

- Can you tell us about any time it didn’t go so well? What was the reason for it?

9. Can you tell us about what you believe is the most important view in the treatment for the orphan children diagnosed with cerebral palsy?

10. According you, are there any differences between the treatment for a child diagnosed with cerebral palsy if the children is orphan or have parents?

- If yes, please describe in what way?

11. Can you tell us about your experiences you have from working with the children at the Center for Rehabilitation and Support For Disabled Children.

12. Obstacles you have to concur in your profession when working with the orphan children diagnosed with cerebral palsy at the Center for Rehabilitation and Support For Disabled Children?

- If yes, how do you concur it?

13. Your views and experiences from working with the orphan children diagnosed with cerebral palsy the Center for Rehabilitation and Support For Disabled Children?

14. Before we end the interview, is there something else you would like add?

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Appendix 2

Consent form participant

I do hereby acknowledge, consent and agree to all of the following terms and conditions:

• I have the right to withdraw my participation in the study whenever I like without any given reason.

• I have the right to change or exclude parts of my own interview if I regret anything I have said.

• I have received information about the confidentiality of the study.

• The interview will be recorded.

• I have received information about how my data will be used.

Participant 1

Date: ________________

Signature: __________________________________________________

Printed name: ________________________________________________

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Appendix 3

Approval for the study from the head manager

I do hereby approve of the study of the bachelor thesis named “Views and experiences on physiotherapeutic intervention from physiotherapists working with orphan children diagnosed with Cerebral palsy” will be executed at the Rehabilitation Center and Help

Disabled Children, Ho Chi Minh City, Vietnam.

Date: ________________

Signature: __________________________________________________

Printed name: ________________________________________________

”Love and patience is most important”

UPPSALA UNIVERSITY

Department of Neuroscience Physiotherapy Programme Research Methodology IV Bachelor thesis 15 hp