Parenting in cerebral palsy: where and when the challenges and needs occur?

Universidade do Minho Escola de Psicologia Ana Isabel Guimarães da Cunha Parenting in Cerebral Palsy: Where and when the challenges and needs occur? outubro de 2019 UMinho | 2019 Ana Cunha Parenting in Cerebral Palsy: Where and when the challenges and needs occur? Ana Isabel Guimarães da Cunha Parenting in Cerebral Palsy: Where and when the challenges and needs occur? Dissertação de Mestrado Mestrado integrado em Psicologia Trabalho realizado sob a orientação do Professor Doutor Pedro Rosário e da Doutora Armanda Pereira Universidade do Minho Escola de Psicologia outubro de 2019 ii DIREITOS DE AUTOR E CONDIÇÕES DE UTILIZAÇÃO DO TRABALHO POR TERCEIROS Este é um trabalho académico que pode ser utilizado por terceiros desde que respeitadas as regras e boas práticas internacionalmente aceites, no que concerne aos direitos de autor e direitos conexos. Assim, o presente trabalho pode ser utilizado nos termos previstos na licença abaixo indicada. Caso o utilizador necessite de permissão para poder fazer um uso do trabalho em condições não previstas no licenciamento indicado, deverá contactar o autor, através do RepositóriUM da Universidade do Minho. Licença concedida aos utilizadores deste trabalho Atribuição-NãoComercial-SemDerivações CC BY-NC-ND https://creativecommons.org/licenses/by-nc-nd/4.0/ iii Agradecimentos Gostaria de agradecer… Aos meus pais, pelo amor incondicional, pelos valores e exemplos transmitidos que fazem de mim o que sou hoje. Obrigada por me darem a oportunidade de seguir os meus sonhos e me incentivarem a querer sempre fazer mais e melhor. À restante família, avós, padrinhos, tios, primos e afilhado. Obrigada por tornarem este percurso mais simples, mais bonito e, sem dúvida, mais feliz. Ao Pedro, companheiro de quase todas as horas, pelo carinho, paciência e cuidado. Obrigada por acreditares em mim mesmo quando eu não sou capaz de o fazer. À Elsa e à Rita pela amizade. Obrigada por estarem sempre cá para me apoiar. Aos elementos dos Grupo de Investigação em Autorregulação da Aprendizagem (GUIA) que tão bem me acolheram durante este ano e meio de trabalho. Em especial à Sílvia, pela simpatia, carinho e preocupação com que me tratou desde o início. À Ritinha, pela disponibilidade, pelo incentivo e por ter a palavra certa no momento certo. Obrigada ainda, às duas, pelo contributo intelectual que deram para a realização desta tese. Por último, ao André, pela vontade de ajudar e pela espontaneidade. Obrigada por nos fazeres rir mesmo quando a vontade não é muita. Às minhas colegas de turma, Clara, Raquel e Vânia pelos momentos partilhados ao longo desta aventura no GUIA. Em especial à Clara, com quem mais partilhei as minhas dúvidas e inquietações, principalmente nos últimos meses. Obrigada por me ouvires e tranquilizares. Ao Professor Pedro, pela orientação, incentivo e apoio. Obrigada por me dar a oportunidade de aprender com o professor. À Doutora Armanda, pela orientação, entrega, persistência, compreensão e carinho demonstrados. Obrigada por nunca desistir deste projeto, nem de mim. Obrigada a todos! iv STATEMENT OF INTEGRITY I hereby declare having conducted this academic work with integrity. I confirm that I have not used plagiarism or any form of undue use of information or falsification of results along the process leading to its elaboration. I further declare that I have fully acknowledged the Code of Ethical Conduct of the University of Minho. University of Minho, october 18, 2019 Full name: Ana Isabel Guimarães da Cunha Signature: ___________________________________________________________________ v Parentalidade na Paralisia Cerebral: Onde e quando surgem os desafios e as necessidades? Resumo A Paralisia Cerebral está referenciada como a desordem física mais comum na infância. É originada por uma lesão cerebral que ocorre em períodos pré-, periou pós-natais, sendo o movimento e a postura as áreas mais comumente afetadas. O exercício da parentalidade com uma criança com estas características traz desafios e também necessidades acrescidas, por exemplo, necessidades de informação. O objetivo do presente estudo foi o de identificar os desafios e necessidades parentais percebidos por pais de crianças com paralisia cerebral que frequentam o primeiro ciclo do ensino básico. Para tal foi usado um desenho qualitativo, no qual os 11 participantes responderam a uma entrevista semiestruturada centrada na sua experiência de educar uma criança com uma esta perturbação desenvolvimental. As entrevistas foram analisadas segundo uma abordagem temática e recorrendo ao software Nvivo . Surgiram então quatro temas: (1) Desafios experienciados pelos pais, (2) Necessidades parentais de informação, (3) Necessidades parentais de suporte e, (4) Necessidades parentais de bemestar pessoal. Foi ainda possível identificar o(s) contexto(s) e o(s) período(s) de desenvolvimento em que os desafios e as necessidades ocorrem. É expectável que estes resultados possam contribuir para o desenho de intervenções e o estabelecimento de boas práticas junto desta população. Palavras-chave: desafios, necessidades, paralisia cerebral, parentalidade vi Parenting in Cerebral Palsy: Where and when the challenges and needs occur? Abstract Cerebral Palsy is considered the most common physical disorder in childhood. It is a neurodevelopmental disorder, caused by a brain injury that occurs in pre, post or natal periods with movement and posture impact. Parenting a child with these clinical features brings challenges such as additional parenting tasks and also requires, for example, the need for further educational information. The present study aimed to identify the parenting challenges and needs faced by parents of children with cerebral palsy attending elementary school. For this, a qualitative approach was used with a sample of 11 participants who responded to a semi-structured interview centered on their experience of educating a child with Cerebral Palsy. The interviews were analyzed according to a thematic analysis approach. Four themes were identified: (1) Challenges experienced by parents, (2) Parental need for information, (3) Parental need for support, and (4) Parental need for personal well-being. It was also possible to identify the context(s) and period(s) of the children's development in which these challenges and associated needs occur. Findings are expected to contribute to identify good practices and benefit the parenting experience of parents of children with cerebral palsy. Keywords: cerebral palsy, challenges, needs, parenting vii Contents Parenting in Cerebral Palsy: Where and when the challenges and needs occur? ................................... 8 Parenting experiences in CP: Challenges and needs mapping .......................................................... 9 Critical Developmental Periods approach ....................................................................................... 10 Bronfenbrenner Ecological Systems Theory ................................................................................... 11 Materials and Methods ..................................................................................................................... 11 Participants and recruitment process ............................................................................................ 11 Procedure ..................................................................................................................................... 13 Data Analysis ................................................................................................................................ 15 Results ............................................................................................................................................. 16 Theme 1: Challenges experienced by parents ................................................................................ 16 Theme 2: Parental need for information ........................................................................................ 19 Theme 3: Parental need for support .............................................................................................. 21 Theme 4: Parental need for personal well-being............................................................................. 23 Discussion ........................................................................................................................................ 25 Limitations and future studies ....................................................................................................... 27 References ....................................................................................................................................... 28 Index of tables Table 1 Demographic characteristics of participants: parents (N = 11). ………………………………………..12 Table 2 Demographic characteristics participants’ children (N=12) ……………………………………………..13 Table 3 General, Typical and Variant Outcomes from the Cross-Analysis of 12 parents’ interviews …….17 List of illustrations Figure 1. Themes, sub-themes and the connections between them. In black the general and in grey the typical sub-themes …………………………………………………………………………………………………………….24 PARENTING IN CEREBRAL PALSY 14 Firstly, the children Gross Motor Function Classification System (GMFCS) level was requested to the physical therapists. GMFCS is a standardized classification system that classifies the gross motor children’s skills (e.g., walking, climbing stairs, sit) in one of the five descriptive levels considering the motor severity (level I to V). This is a reliable classification instrument for children with CP (intraclass correlation coefficient .95, 95% CI .90-.97) (Palisano et al., 1997). Additionally, parents were asked to fulfill a sociodemographic questionnaire (e.g., literacy level, number of children). Educational Video . Afterwards parents were invited to visualize a five minutes educational video before the interview moment. The educational video (Diu & Lockhart, 2015; see https://s.telegraph.co.uk/graphics/projects/fathers-days/index.html) was created by a cartoonist from the Telegraph “whose experience of fatherhood was unlike anything he had expected”. The video was translated to Portuguese in audio and using subtitles. The video presents, in two different parts, a selfreport of the expectations, difficulties, and adaptations to the fatherhood of a child diagnosed with CP. Firstly, the video explored the diagnosis communication reaction, highlighting father’s perception of loss of control and lack of information about what was happening. The second part explored the management and adjustment of the parenthood expectations to the long-term health condition of his daughter (e.g., acceptance, guilt feelings, setting priorities). This video was used with an ice-breaker purpose. The option of using this method were grounded on the fact that parents of children with CP are frequently questioned about developmental goals regarding their children and difficulties in the process. Consequently, their narrative is likely to develop a practical and goal-driven approach. Through the presentation of a peer experience we aimed to promote an emotional connection with characters (e.g., Singhal & Rogers, 2002) and instigate participants readiness to reflect on the challenges and needs in their parenting of CP children. The rationale to use the video was theoretically rooted on the model by Larkey and Hecht (2010). These authors conceptualized a theoretical model (Narrative as Culture – Centric Health Promotion) to describe the relationships between the narrative and their effects on health behaviors. This model has three levels: the narrative characteristics, the mediators and the outcomes/responses that sequentially affect each other (Larkey & Hecht, 2010). The first one is related to the involvement of the person exposed to the narrative with the characters, the story and the cultural aspects associated. To this aim, story and characters must be realistic. The main persuasive effects identified by this model are emotional connection (i.e., empathy and linking) and the identification with the characters (Singhal & Rogers, 2002; Slater, Rouner, & Long, 2006). Moreover, the mediator (narrator) promotes the process of understanding the phenomena by engaging PARENTING IN CEREBRAL PALSY 15 people who is watching the video to the story in a personal level. These first two levels are expected to predict positive attitudes towards, and, in some cases, behavior changes. The last one, outcomes/responses level, is related to the transfer of the lessons learned on the narrative to the real world. The identification with topics in the story is expected to trigger actions in the individual life (e.g., discussion) (Larkey & Hecht, 2010). The video used in this study fitted in the narrative characteristics mentioned in the model as follows: realistic (a nearby story), emotional connection, and identification with the characters (“that person is like me”) (Larkey & Hecht, 2010). Semi-structure interview: After the visualization of the video, parents participated in a semistructured interview focused on their perceptions of parenting challenges and major needs faced while educating a child with CP. This qualitative data collection method uses open-ended questions to promote detailed storytelling sharing about participants own perception (Madill, 2012). The data collection took place in a sound-proof room (medical office) in the rehabilitation centre. The six open-ended questions of the interview aimed to: (i) explore the participants’ feelings and thoughts while watching the educational video (e.g., How do you felt watching this video? What do you think about the message conveyed?) and (ii) learn their thoughts about being parent of a child with a developmental disorder (e.g., If I ask you about what is like be a father of a child with a developmental disorder, what would you say?). All the interviews were audio recorded and then transcribed verbatim. Data Analysis To analyze the interviews we used the thematic analysis approach (see Braun & Clarke, 2006). After the identification of the codes through “top-down” and “bottow-up” analysis, researchers searched for patterns and interconnections between codes to generate themes (Braun & Clarke, 2006). Prior to the analysis, a coding frame (codebook) was created based on the theoretical background (e.g., Buran et al, 2009; Dieleman et al., 2019; Palisano et al., 2010; Nurullah, 2013) and on the two bodies of knowledge selected to ground this research. Specifically, for the critical developmental periods the codes were retrieved from the theory and matched with the participant’s speech (i.e., Pre-natal; Birth and Neo days; First days at home; Pre-school period; School period; and Life-span). Moreover, a deductive approach was used to code the data, fitting data to these theoretical-driven codes. During the process, news codes emerged from the data. PARENTING IN CEREBRAL PALSY 16 Data analyses were conducted with the assistance of QSR International’s NVivo 10 software. This software simplifies the data analytics and provides tolls for and support in the search process of map interconnections between codes and check for patterns (Bazeley & Jackson, 2013). The codification of the data involved two researchers (AC and AP) with training on qualitative analysis. AC codified all the data and AP codified 30% of the data. Consensus was reached after discussing the discrepancies in the codification. The inter-observer agreement reached (=.90) indicates an almost perfect agreement according to Landis and Koch (1977). Results Data were organized and reported against the two bodies of knowledge considered, i.e., in which development period challenge and need is more prevalent and in which context occurred more frequently. Using a thematic approach four themes emerged: (1) Challenges experienced by parents, (2) Parental needs for information, (3) Parental need for support and, (4) Parental need for personal well-being. Categories were screened using the criteria of Hill et al. (2005) to Consensual Qualitative Research (CQR), i.e., general, typical and variant outcomes. A general outcome means the theme is present in responses from almost all the participants (i.e., 11 [91.6%] or 12 [100%]). This type of outcome suggests that these findings match the speech of the majority of the participants. A typical outcome includes more than half of the sample until the cutoff for general. In this case means the theme is identified in responses from at least seven (58.3%) but no more than 10 (83.3%) of the 12 participants. Lastly, a variant outcome comprises at least two cases up to the cutoff for typical. In this case means the theme is present in responses between two (16.7%) and six (50%) of the 12 participants (see Table 3). This section presents the general and typical findings by theme. In the reported findings, participants verbatim quotes were introduced to illustrated categories patterns that were identified in the conversation held during the interview. Theme 1: Challenges experienced by parents Most of the participants reported challenges that they had experienced some years ago (shortly after the birth of their child with CP), were facing at the moment, or were anticipating that they would facing in the future. Regarding the birth and neonatology experience, participants highlighted diagnosis acceptation as a relevant step stone of the process. Participants reported to have felt anger, guilty and sense of unfairness in the diagnosis moment. However, most of them were able of overcome these feelings and accept their child condition. “At home A. is now fully accepted; but when you learn the diagnosis […] , in that moment is difficult to accept the situation […] is not easy, because it is a shock” (A1p0). PARENTING IN CEREBRAL PALSY 17 Table 3 General, Typical and Variant Outcomes from the Cross-Analysis of 12 parents’ interviews Theme General Subtheme(s) f Typical Subtheme(s) f Variant Subtheme(s) f Challenges experienced by parents Additional daily parenting tasks 12/12 Achievements 10/12 Anticipation with the transition to the adulthood 6/12 Comparison with typically developing children 12/12 Comprehension of children functionality 10/12 Parents’ physical health 5/12 Diagnose acceptation 12/12 Family management 10/12 Job and childcare management 4/12 Parenting burden 12/12 Comparison with non-typically developing children 8/12 Parental social isolation solation 3/12 Parents’ mental health 11/12 Social Stigma 8/12 Parental needs for information Lifespan 11/12 Meso-system 10/12 Micro-system 10/12 Macro-system 7/12 Parental needs for support Lifespan 12/12 Birth and Neo days 10/12 First days at home 5/12 Meso-system 12/12 Parental needs for personal well-being Lifespan 10/12 Micro-system 10/12 Parental needs for services Lifespan 5/12 Meso-system 5/12 Macro-system 5/12 PARENTING IN CEREBRAL PALSY 18 Following to the diagnosis moment, a set of not expected parenting tasks occupied family time requiring a strict time-management (e.g., medical consultations, therapies) “ […] was born on June 23rd and went home on July 7th. Until July 29th we [my son and I] attended a total of 37 consultations with different therapists and medical doctors […] ” (A1p0), and the need to set priorities to ensure that the needs of the new born child with CP were fulfilled “[…] My husband agreed with me that I needed to quit my job. We agreed that I stay in home taking care of our daughter and doing everything for her benefit, rather than earning money of having a career ” (M1e0). Consequently, parents reported the need to be engaged in a continuous learning process on how children with CP behave, on their needs and understand how they could establish safe routines for their children. Despite acknowledging the complexity of the ongoing educational challenge, parents stressed this process as positive and rewarding “Despite the huge efforts G. makes to talk better, he cannot hold a clear and completely understandable communication. So, to communicate with him, sometimes we have guess his possible needs or wishes. We have to think on things that we anticipate that he is going to ask. We have to put ourselves in his shoes and find the word that he wants to say, and that works for him and for us” (G8l1). Children small achievements become relevant because after the diagnosis of long-term health condition, parent's expectations about their children abilities are limited. For that reason, all the child achievements are considered very important hallmarks for the family hope increasing. “ […] G. teaches us that [...] he never gives up. We did not expect that he would walk, and today he walks; G. was not expected to succeed in school, but he attends school and has good grades” (G1p9). However, parents of children with CP reported that is unavoidable to compare their children behaviors with those of children with typical development; but they mentioned to feel displeasure when they listen to comparisons regarding their own children made by others. Furthermore, this social judgment is often associated with lack of knowledge about the clinical condition and is likely to cause suffering and anger for parents of children with CP “One time, my daughter was yelling at the supermarket and one lady covered the ears of his son. This child told her that he wants to yell too, but the mother replied: “Son, you are not a freak”. This sentence hurt me deeply” (B8e6). Educating a child with CP was associated by parents to a constant feeling of pressure or burden and, in some moments, to disturbance in their mental health state “we always feel an agony, me and my wife, that pushes us to learn more to be able to teach G. everything that may help him feel normal and live a happy life” (G1p9); “There were days that I just wished to disappear. That days still exist” (B8e6). PARENTING IN CEREBRAL PALSY 19 Some of the challenges reported by parents are related to specific needs. This relation will be addressed in the following sections considering the developmental period and the context (micro-, meso- , macro-system) in which the reported behavior occurred with higher frequency. Theme 2: Parental need for information Parents reported that during the journey of educating a child with CP they often felt the need for more information about the clinical condition. All participants had premature children with CP and the diagnosis communication was reported as a relevant steppingstone to the task of parenting their child. Participants stressed that the birth of a premature child with a clinical diagnosis unleashes a mix of emotions, thoughts, and questions that were difficult to deal with. For example, surprise, doubts about the disability in itself, uncertainty about the prognostics, fear about the future, doubts about their ability to educate a child with a long term health condition and general questions about the process, such as “why did this has happened to my child?” (M1e0), “why this happened to us?” (L6l8). These questions have a different nature: those mostly about the reasons why their child had born with CP, and, the others about daily life management (e.g., what to do? how can we promote his/her autonomy? what to expect?). The latter increase the need for information to help parents cope with educating a child with CP. The need for information was referred by participants as something that is always present in their lives due to the fact that CP is a long-term health condition with a lifelong impact. “In the beginning, everything was scary, I didn't know what was going to happen, I didn’t understand anything, I didn’t know the purposes and how to use some medical devices […] , but today we have more knowledge about the process, we feel a little less threatened [...] ” (B1s6). Parents stressed the rehabilitation process as an example of a set of medical appointments, sessions with rehabilitation therapists and activities that occupies an important part of the family days. They all mentioned that CP is complex and unique due to the distinct manifestations of the clinical condition for each child, and for that reason they often lack information about what and why to follow the protocols indicated by the medical doctors or the rehabilitation therapists. For example, participants reported the difficulties felt to understand and accept that a child with 15th days of life is in need of being submitted to physiotherapy treatments. “I didn’t know what was the main purpose of occupational therapy […] the physiotherapy purpose was more clear […] useful for the neck pains. Well, at home I did what I could, I used to put a warm towel on the back and giver a massage, and that was it [laughs]. But the neurological rehabilitation is very different, that is something don’t you agree?” (A1p0). Notwithstanding, parents stressed that the rehabilitation therapists working with their children were available and prepared to explain the specificities of therapy and the benefits associated. Parents PARENTING IN CEREBRAL PALSY 20 reported seizing the availability of these therapists to teach them some techniques that they could use at home to improve their child competencies and autonomy. Another topic found in this theme was related with the planning of a new pregnancy. One of the participant mothers shared that she wanted deeply to plan another pregnancy; however, she was afraid about the possibility of having another child with CP. A participant father who had other child after the first with CP, reported that this latter pregnancy entailed high tension for all the family; during the pregnancy both parents felt in a permanent alert mood which led them to monitor the process closely with several medical doctors to ensure that the baby was growing as expected. “For example, thinking in having another child It is difficult, because we need to overcome the barrier of the first experience. I would like to have another child, but obviously, there is some pain and bruises associated, you understand what I mean […] when I give this idea some thought. Because, […] how can I put it? This was a relevant learning experience for my life, but I don’t want to repeat it” (T7f4). Moreover, parents also stated that services and organizations their children were attending (e.g. social services, hospitals) need to learn further about this disability to better understand the unique nature of CP and the problems associated with the condition. Parents identified key-persons that should improve their knowledge about CP: extended family, friends, and doctors. About the last ones, a mother referred that the specialist doctors tend to have sensibility to the specificities of this disability, but general practitioners no (e.g., emergency doctors). “ […] a simple example: the respect for people with this clinical condition and their families. Children with CP are likely to have a weakened respiratory system, and because of that, when we are in the hospital, we can’t be in the waiting room for a long time, where there are countless bacteria’s. So, I always inform the nurses that my son has bronchopulmonary dysplasia, and ask them to put us in another room so we can wait without being so exposed […] . Most of the doctors understand and try to find a room, but other tell me that we have to wait there as all people, and that solution often comes with a respiratory infection and a stay of a few days in the pediatric hospital […] ” (V1m7/P1m7). School is also referred as a context in which educators (e.g., school administrators, teachers, staff) show lack of information about CP. As an example, parents mentioned the typical food meal offered in schools to children with CP with feeding impairments not fitted to their needs. One participant mother referred that school did not prepare the food for her daughter following the medical doctors recommendations, and because of that, her daughter was losing weight. As this situation was recurrent despite the alerts to the school administration, the family decided to prepare the food at home. “The soup has to be chopped very well, neither too thin nor too thick. At school, the soup it would stick on the wall, PARENTING IN CEREBRAL PALSY 21 as students say. M. can’t swallow that it and almost all the soup in the spoon stay outside her mouth rather than inside. The truth is that her weight was decreasing, despite the supplement cans […] the school is not helping as expected. So, we decided to add the task of preparing her meals to the never ending list of tasks for every day […] ” (M1e0). Parents also reported that “society as a whole” does not cope well with children with disabilities. To exemplify, participants said that people are not likely to be aware of the load involved in educating a child with CP. Furthermore, parents stated that for example, either in school or in the hospital children with CP face a strong challenge: ”the stigma of being different”. According to participants, the majority of the stigma situations occur due to lack of information about this clinical condition. Parents stressed that people with more awareness about disabilities are more available to deal with their children differently. For example, some children with CP struggle to find other children available to play in the playground or adults open to listen without judging. “When we are in a coffee shop or in the restaurant, my son always wants to place the order. He looked me in the eyes and asks gently “Mom, can I go?”; now I encourage him to “Go on, son. Go and order the sandwich”. Now, I let him do it. But for a long time I protected him because I knew that people would look at him like an alien. Sometimes people say horrible things in a mumble. We don’t have a society ready for these kids” (A1p0). Theme 3: Parental need for support The need for support was identify as a general theme in the parents speech. More specifically, parents reported the need for being supported but, also, the need for giving support. Participants mentioned the day of the birth and the days at the neonatology sector at the hospital as the most stressful moments. During this time frame parents received their child diagnosis and, consequently, reported the emergent need for being supported at that moment. Most of participants stressed the relevance of having access, for example, to the support from an educator with proper training to help them cope with the diagnosis and answer their questions about how it will be their daily life. “ […] when your first born son has CP, the situation is even more difficult because you feel completely lost: It is our first experience […] to the expected inexperience of a rookie, you add the absolute sense of being alone with a huge task ahead. You hear multiple tips, suggestions, warnings and advices from different people in different places; several inconsistent, most wrong. And you feel alone, you don’t know where you should go or who can help you […] when they [medical doctors at the hospital] give you the diagnosis of long term health condition there should be someone, not necessarily a medical doctor, an educator with medical training, or a parent with a child with CP giving you support and […] hope ” (S7c8). PARENTING IN CEREBRAL PALSY 22 Contrarily to the majority of participants in this study, a mother of twins with CP reported that enrolling in the neonatology support group did not help her. When compared with the other parents in the support group with children with CP, this mother perceived her situation as very distinct and unique. For this reason, instead of receiving support from the group, she felt even more uncomfortable and anxious than she was before enrolling the group. “ […] I quit attending the meetings [support sessions for parents of children held by a hospital] because there I found parents whose children with CP were in the neonatology for 15 days while my sons were hospitalized for more than six months. For me, that sessions didn’t make much sense because I didn’t have anything to add, I didn’t want to talk there about my parenting experience because it is bad” (V1m7/P1m7). However, this particular experience was not representative of the general discourse of participants regarding the importance of sharing and learning from peers with similar experience. The majority of participants reported talking with parents of older children with CP (e.g., in the waiting room of the rehabilitation center) in the first months after their child was born as a positive experience. These parents understood these conversations as opportunities to collect information and benefit from peers-support; participants mentioned that parents with more experience helped them better understand new possibilities and alternative paths to design their family routines. “I learned very much in the waiting rooms; sometimes more important things than those learned in the therapies” (A1p0). Beyond this support (focused on encouraging the acceptance of the diagnosis), some participants reported the need of support on how to perform the daily parenting tasks with their child. They also stressed the need for support from a formal caregiver that could take care of their child for some time. This help would allow parents to have time for themselves (e.g., go to the medical doctor, rest in the coach). “How is to be mom of B.? How can I say [about myself] , B. occupies much of my time. […] I don’t have plenty time for my things: to go to a hairdresser […] ; For example, unfortunately, I didn’t do medical exams for a long time; and because of that delay, now I have to do a surgery. To take care of B, we do not take care of ourselves […] ” (B1s6). Some participants reported the need for support other parents that are in the beginning of the process of taking care of a child with CP. One father shared an experience in a support meeting to illustrate how parents in the first months may feel confused and anxious. “ […] I remember one time in one support meeting there was a couple with a child, a baby, a newborn baby; so, they had learned recently the diagnosis and they questioned out loud: “What will happen with our life?”. In these meetings it is important to transmit that the world does not finish with the diagnosis of CP, everything is possible; of course, it depends whether they are willing to believe it or not” (G1p9). PARENTING IN CEREBRAL PALSY 23 Parent’s reported that this need for support and help to care for their children will be present for the rest of their lives. However, the days at the neonatology and the moment of the diagnosis communication could be considered a critical period to benefit from support. Theme 4: Parental need for personal well-being The majority of participants reported needs related to their own well-being. While accompany their children education, parents mentioned to follow strict routines with many and very diverse physical and emotional demanding tasks likely to cause stress and fatigue (e.g., children with CP unable to walk need to be picked up by their parents/caregivers for every displacement). “We don’t have any relaxing moment because we are always alert to learn if one of them is drooling to clean him; if V. have pee or if P. wants to poop. So, I think that for us there is no moment of rest and quiet peace […] We are always busy” (P1m7/V1m7). Occasionally, participants reported to feel the need to renounce to do something pleasant for themselves to take care of the child. “Many times, I desire want to watch or play football with my friends, but I know that if I stay at home with my son he will be happy and safe. So, I stay.” (G8l1) Some parents mentioned that their children will need to be taken care of in a life-long term. This fact requires reflection about the expectations and challenges associated. For example, participants reported the constant need to manage the physical and emotional fatigue. “[…] Sometimes, at the end of the day, my head is completely exhausted. I´m always very tired. I go to bed early, like 11 p.m., because I´m tired and I need to rest to have strength to cope with all my tasks, but I can’t sleep. My personal doctor gave me a medicine, but for now I don’t want to create an addition to the pills” . (M1e0) Additionally, parents reported to feel demoralized when realizing that despite their daily efforts, the goals set for their children health are not being accomplished as they hoped. Some parents mentioned that they fight on a daily basis with their-own reality, because they believe that with a strong commitment and effort, their children lives would improve (e.g., begin walking, be independent). However, in some cases, the children health evolutions are not consistent with the efforts displayed. Some parents mentioned that their own well-being is threatened when they realize the slowness of the improvement process, and the limited level of control on the results of their efforts. “ […] During many years this was my daily fight: do everything for him, every effort to help him be capable of walk independently. But now I begin to realize that is being hard to reach this goal […] despite all the therapies […] it’s being much more difficult than what we had anticipated and idealized for him all these years.” (G8a9). PARENTING IN CEREBRAL PALSY 30 Niesel, R. & Griebel, W. (2007). Enhancing the competence of transitions systems through coconstruction. In A. W. Dunlop & H. Fabian (Eds.), Informing Transitions in the Early Years: Research, Policy and Practice , (pp. 21-32). London, United Kingdom: McGraw-Hill Education. Novak, I., Mcintyre, S., Morgan, C., Campbell, L., Dark, L., Morton, N., … Goldsmith, S. (2013). A systematic review of interventions for children with cerebral palsy: State of the evidence. Developmental Medicine & Child Neurology, 55 (10), 885-910. doi:10.1111/dmcn.12246 Nurullah, A. S. (2013). “It’s really a roller coaster”: Experience of parenting children with developmental disabilities. Marriage & Family Review , 49 (5), 412-445, doi:10.1080/01494929.2013.768320 Ones, K., Yilmaz, E., Cetinkaya, B., & Caglar, N. (2005). Assessment of the Quality of Life of Mothers of Children with Cerebral Palsy (Primary Caregivers). Neurorehabilitation and Neural Repair, 19 (3), 232-237. doi:10.1177/1545968305278857 Palisano, R., Rosenbaum, P., Walter, S., Russell, D., Wood, E., & Galuppi, B. (1997) Development and reliability of a system to classify gross motor function in children with cerebral palsy. Developmental Medicine and Child Neurology, 39 (4), 214-223. doi:10.1111/dmcn.1997.39.issue-4 Palisano, R. J., Almarsi, N., Chiarello, L. A., Orlin, M. N., Bagley, A., & Maggs, J. (2010). Family needs of parents of children and youth with cerebral palsy. Child: Care, Health and Development, 36 (1), 8592. doi:10.1111/j.1365-2214.2009.01030.x Raina, P., O’Donnell, M. Rosenbaum, P., Brehaut, J., Walter, S. D., Russel, D. … Wood, E. (2005) The health and well-being of caregivers of children with cerebral palsy. Pediatrics, 115 (6), 626-636. doi:10.1542/peds.2004-1689 Rentinck, I. C. M., Ketelaar, M., Jongmans, M. J., & Gorter, J. W. (2007). Parents of children with cerebral palsy: A review of factors related to the process of adaptation. Child: Care, Health and Development, 33(2), 161-169. doi:10.1111/j.1365-2214.2006.00643.x Rimm-Kaufman, S. E., & Pianta, R. C. (2000). An ecological perspective on the transition to kindergarten. Journal of Applied Developmental Psychology, 21 (5), 491-511. doi:10.1016/s01933973(00)00051-4 Rosenbaum, P. (2003). Cerebral palsy: What parents and doctors want to know. British Medical Journal, 326 (7396), 970-974. doi:10.1136/bmj.326.7396.970 Rosenbaum, P., Paneth, N., Leviton, A., Goldstein, M., Bax, M., Damiano, D., … Jacobsson, B. (2007). A report: The definition and classification of cerebral palsy April 2006. Developmental Medicine & Child Neurology Supplement, 49 (6), 8-14. doi:10.1111/j.1469-8749.2007.tb12610.x Russ, S. J., Herbert, J., Cooper, P., Gunnar, M. R., Goodyer, I., Croudace, T., & Murray, L. (2012). Cortisol levels in response to starting school in children at increased risk for social phobia. Psychoneuroendocrinology, 37 (4), 462-474. doi:10.1016/j.psyneuen.2011.07.014 Singhal, A., & Rogers, E. M. (2002). A theoretical agenda for entertainment education . Communication Theory, 12 (2), 117-135. doi:10.1111/j.1468-2885.2002.tb00262.x Slater, M. D., Rouner, D., & Long, M. (2006). Television dramas and support for controversial public policies: Effects and mechanisms. Journal of Communication, 56 (2), 235-252. doi:10.1111/j.1460-2466.2006.00017.x Surveillance of Cerebral Palsy in Europe. (2002). Prevalence and characteristics of children with cerebral palsy in Europe . Developmental Medicine & Child Neurology, 44 (9), 633640. doi:10.1017/s0012162201002675 Trabacca, A., Vespino, T., Di Liddo, A., & Russo, L. (2016). Multidisciplinary rehabilitation for patients with cerebral palsy: Improving long-term care. Journal of Multidisciplinary Healthcare, 9, 455462. doi:10.2147/jmdh.s88782 Whittingham, K., Wee, D., & Boyd, R. (2011). Systematic review of the efficacy of parenting interventions for children with cerebral palsy . Child: Care, Health and Development, 37 (4), 475483. doi:10.1111/j.1365-2214.2011.01212.x PARENTING IN CEREBRAL PALSY 31 Whittingham, K., Boyd, R. N., Sanders, M. R., & Colditz, P. (2013). Parenting and prematurity: Understanding parent experience and preferences for support. Journal of Child and Family Studies, 23 (6), 1050-1061. doi:10.1007/s10826-013-9762-x