[Acute care of patients with cerebral palsy in neuro-resuscitation surgery]. / La prise en soins des patients cérébrolésés à la phase aiguë en neuroréanimation chirurgicale.

Severe head trauma, with or without polytrauma, subarachnoid haemorrhage due to aneurysm rupture, is an unexpected tragedy for patients and their families. These accidents are likely to result in extremely serious neurological damage, with many of the patients under our care facing a life-threatening prognosis. To protect the brain, one solution is to put the patient into a deep sleep during the so-called "acute" phase, making it impossible to assess the repercussions of the initial injuries at the time: this is what we call "waiting resuscitation".

[Follow-up of cerebral palsy patients in neurological rehabilitation departments]. / Le suivi des patients cérébrolésés en service de rééducation neurologique.

Patients suffering from head trauma or hemorrhagic cardiovascular accident can be cared for in special facilities. Located near Grenoble, the Fondation santé des étudiants de France Grenoble La Tronche (ex-clinique du Grésivaudan) (38) provides post-resuscitation care for brain-damaged patients. This article presents the department, its specific features and their daily routine, as shared with us by Mélanie, Leslie and her fellow nurses in the neurological rehabilitation department.

Análisis de los factores relacionados con la carga del cuidador de personas con parálisis cerebral / Analysis of factors related to caregiver burden in carers of persons with cerebral palsy

Objetivo Estudio de prevalencia que describe la percepción de la carga de los cuidadores de los pacientes con parálisis cerebral que asistieron a un centro de rehabilitación neurológica. Material y métodos Esta investigación se realizó en un centro de neurorrehabilitación de Cali, Colombia, en la que participaron 117 cuidadores de pacientes con parálisis cerebral. Se recogió información sobre la percepción de carga del cuidador, sus características sociodemográficas y las clínicas de los pacientes, entre los meses de junio a agosto de 2017. La información sobre la carga del cuidador fue obtenida con el cuestionario de carga de Zarit. Esta variable se categorizó en 2 grupos (carga leve a moderada y carga moderada a severa) para el análisis bivariado. Resultados La mayoría de los cuidadores presentaron carga leve a moderada (74%); se observó un incremento de la probabilidad de carga del cuidador moderada a severa en cuidadores de mujeres (OR 1,35; p>0,05), de niños de 6 a 10 años (OR 1,9; p>0,05), y con mayor compromiso en la función motora gruesa, clasificados en nivel iv y v según GMFCS (OR 1,60 y 1,11, respectivamente; p>0,05). También hubo incremento de carga en cuidadores con edades entre 20 a 39 años (OR 7,92; p<0,05), que se encuentran separados, divorciados o viudos (OR 2,38; p>0,05), y con formación básica secundaria incompleta (OR 2,86; p>0,05). Conclusiones Este estudio evidencia que la percepción de carga del cuidador varía principalmente según el sexo, la edad y la afectación del paciente con parálisis cerebral, así como la edad, el estado civil y el nivel educativo del cuidador (AU)

Objective Prevalence study describing the perception of burden among the caregivers of patients with cerebral palsy attending a neurological rehabilitation centre. Material and methods This study was carried out in a neuro-rehabilitation centre in Cali, Colombia, with the participation of 117 caregivers of cerebral palsy patients. Information was gathered on caregiver burden, caregivers’ sociodemographic characteristics and the patients’ clinics between June and August 2017. Information on caregiver burden was collected with the Zarit Burden Interview. Burden was classified into 2 groups (light to moderate burden and moderate to severe burden) for the bivariate analysis. Results Most caregivers experienced light to moderate burden (74%); an increase in the probability of burden among caregivers with moderate to severe burden was observed in the caregivers of women (OR 1.35; P>.05), children aged 6 to 10 years (OR 1.9; P>.05), and those with greater gross motor function involvement, classified in level iv and v according to the GMFCS (OR 1.60 and 1.11, respectively; P>.05). Burden was also higher in caregivers who were separated, divorced or widowed (OR 2.38; P>.05), and those with incomplete basic secondary education (OR 2.86; P>.05). Conclusions This study suggests that perceived burden among caregivers varies mainly according to the age, sex, and disability of patients with cerebral palsy, as well as the age, marital status and educational level of the caregiver (AU)

Relationships among parenting stress, health-promoting behaviors, and health-related quality of life in Korean mothers of children with cerebral palsy.

Health-promoting behaviors have been shown to enhance the quality of life across diverse populations. In this study, we examined the indirect effects of several health-promoting behaviors on the relationship between parenting stress and health-related quality of life in mothers of children with cerebral palsy (CP). A convenience sample of Korean mothers (N = 180) of children aged 10 months to 12 years with CP was recruited from clinical and school settings. Health-promoting behaviors were measured using the health-promoting lifestyle profile II, which is comprised of six subscales: health responsibility, physical activity, nutrition, spiritual growth, interpersonal relations, and stress management. Multiple mediation analyses were conducted to examine the mediating role of these behavioral categories. Spiritual growth (ß = .56, p < .05) had an indirect effect on the relationship between parenting stress and physical health-related quality of life while spiritual growth (ß = -1.00, p < .01) and stress management (ß = -.80, p < .05) were found to mediate the association between parenting stress and mental health-related quality of life. The findings of multiple mediation analyses provide evidence of the influence of specific health-promoting behaviors on health-related quality of life, thereby informing the development of intervention programs for mothers of children with disabilities.

Team Approach: The Perioperative Management of Reconstructive Hip Surgery for the Non-Ambulatory Child with Cerebral Palsy and Spastic Hip Disease.

Cerebral palsy (CP) is the leading cause of physical disability in children. Although physical disability is the hallmark of CP, children with CP also often have complex medical comorbidities. Spastic hip subluxation is the second most common orthopaedic deformity in children with CP, and the incidence increases with the severity of CP. Hip surveillance should be implemented in children with CP to monitor hip stability over time. A reconstructive surgical procedure is recommended when the migration percentage is >40%. Perioperative care of children undergoing a hip reconstructive surgical procedure is a multidisciplinary endeavor requiring the expertise of professionals with different backgrounds. The core team should comprise orthopaedic surgeons, nurses, nurse practitioners, pediatricians, nurse case managers, anesthesiologists, and physical therapists. Additional team members include nutritionists, clinical pharmacists, social workers, child life therapists, and consulting specialty services. This review describes the team approach to the perioperative care of non-ambulatory children with spastic hip subluxation undergoing a reconstructive hip surgical procedure, utilizing a case scenario of a 7-year old girl with CP and complex associated medical comorbidities.

Burden of caregivers of children with cerebral palsy: an intersectional analysis of gender, poverty, stigma, and public policy.

BACKGROUND: Caregivers of children with cerebral palsy suffer from a substantial psychosocial burden. However, there is a scarcity of documentation of the various sources of burden in low- and middle-income settings. METHODS: We conducted qualitative in-depth interviews among mothers of children with cerebral palsy attending a physiotherapy facility. We purposively sampled mothers from rural and peri-urban areas in Tamil Nadu, India, till the point of data saturation. We analysed the transcripts using the socio-ecological model to identify the major dimensions of psychosocial burden among these mothers. RESULTS: At the individual level the mothers perceived aches and pains due to the heavy physical activity of caregiving. They also suffered from a feeling of guilt about the child's condition. Due to the difficulty in balancing family and work, they had significant financial burdens. They also perceived a lack of knowledge and awareness about possible options for the treatment of their child. At the interpersonal level, the mothers lacked support from their husband and family in the process of caregiving. They also had to suffer the ill effects of alcoholism and domestic violence from their husbands. They had to compromise on the care they provided to the other family members and their children without cerebral palsy. At the community level, the mothers had no support from the community members and felt isolated from others. The mothers also reported discrimination and lack of participation in social events. Environmental stressors like lack of inclusive public spaces, lack of options for public transport and unfriendly work timings and environment were major sources of burden. The mothers felt that the disability welfare support offered by the government was grossly insufficient and there was no platform for interactions with other peers and mothers suffering from a similar burden. CONCLUSION: Caregivers of children with cerebral palsy have unique burdens in a typical low- and middle-income setting including an intersection of gender norms, poverty, stigmatization and non-inclusive public policy, which need to be addressed to improve the quality of life of caregivers.

QUALITY OF LIFE IN CAREGIVERS OF PEDIATRIC PATIENTS WITH CEREBRAL PALSY AND GASTROSTOMY TUBE FEEDING.

BACKGROUND: Cerebral palsy is the most common cause of physical disability in childhood. Caregivers of patients presenting tetraparesis cerebral palsy (TCP) and gastrostomy tube feeding (GTF) were selected for this study because both conditions represent a great demand for their caregivers. OBJECTIVE: To describe the quality of life related to the state of health of caregivers of patients with TCP who were fed by gastrostomy, to assess the results linked to the mental health of these caregivers, to compare our data with data from other studies on children with cerebral palsy without gastrostomy and to evaluate the possible interference of gastrostomy in the quality of life. METHODS: A number of 30 major caregivers were interviewed and assessed. Quality of life and mental health tools applied and analyzed only for caregivers were: Medical Outcomes Study (MOS) 36-item Short Form Health Survey (SF-36), WHOQOL-BREF and Beck scales. Other information (age, gender, marital status, number of residents per household and psychological support) was evaluated. The Spearman's rank correlation coefficient was used to analyze. A 5% significance level was adopted. RESULTS: Results obtained through questionnaires are as follows: moderate hopelessness in 20% of caregivers (the higher the number of residents per household the higher the level of caregiver's hopelessness); moderate and severe anxiety in 33.33% of the sample studied; moderate and severe depression identified in 46.67% of interviewed caregivers; health-related quality of life of caregivers of patients with TCP were found to be below world averages; no significant figures for suicide potential were noted for the population under this study. CONCLUSION: The HRQOL of caregivers of TCP patients who were fed by gastrostomy is below the average of the general population. Our results are very similar to those found in other studies that evaluated caregivers of patients with cerebral palsy with different degrees of neurological impairment and no report of using GTF, suggesting that the presence of gastrostomy did not negatively interfere with the caregiver's HRQOL.

Qualidade de vida em cuidadores de pacientes pediátricos com paralisia cerebral alimentados por gastrostomia / Quality of life in caregivers of pediatric patients with cerebral palsy and gastrostomy tube feeding

ABSTRACT BACKGROUND: Cerebral palsy is the most common cause of physical disability in childhood. Caregivers of patients presenting tetraparesis cerebral palsy (TCP) and gastrostomy tube feeding (GTF) were selected for this study because both conditions represent a great demand for their caregivers. OBJECTIVE: To describe the quality of life related to the state of health of caregivers of patients with TCP who were fed by gastrostomy, to assess the results linked to the mental health of these caregivers, to compare our data with data from other studies on children with cerebral palsy without gastrostomy and to evaluate the possible interference of gastrostomy in the quality of life. METHODS: A number of 30 major caregivers were interviewed and assessed. Quality of life and mental health tools applied and analyzed only for caregivers were: Medical Outcomes Study (MOS) 36-item Short Form Health Survey (SF-36), WHOQOL-BREF and Beck scales. Other information (age, gender, marital status, number of residents per household and psychological support) was evaluated. The Spearman's rank correlation coefficient was used to analyze. A 5% significance level was adopted. RESULTS: Results obtained through questionnaires are as follows: moderate hopelessness in 20% of caregivers (the higher the number of residents per household the higher the level of caregiver's hopelessness); moderate and severe anxiety in 33.33% of the sample studied; moderate and severe depression identified in 46.67% of interviewed caregivers; health-related quality of life of caregivers of patients with TCP were found to be below world averages; no significant figures for suicide potential were noted for the population under this study. CONCLUSION: The HRQOL of caregivers of TCP patients who were fed by gastrostomy is below the average of the general population. Our results are very similar to those found in other studies that evaluated caregivers of patients with cerebral palsy with different degrees of neurological impairment and no report of using GTF, suggesting that the presence of gastrostomy did not negatively interfere with the caregiver's HRQOL.

RESUMO CONTEXTO: A paralisia cerebral é a causa mais comum de incapacidade física na infância. Cuidadores principais de pacientes que apresentam paralisia cerebral tetraparética (PCT) em alimentação por tubo de gastrostomia foram selecionados para este estudo porque ambas as condições representam uma grande demanda para seus cuidadores. OBJETIVO: Descrever a qualidade de vida relacionada à saúde (QVRS) de cuidadores de pacientes com PCT alimentados por gastrostomia e avaliar os resultados relacionados a sua saúde mental, comparar nossos dados com dados de outros estudos em cuidadores de crianças com paralisia cerebral sem gastrostomia e avaliar a possível interferência da gastrostomia na qualidade de vida dessa população. MÉTODOS: Trinta cuidadores foram entrevistados e avaliados. Os instrumentos de qualidade de vida e saúde mental foram aplicados e analisados apenas para os cuidadores foram: Medical Outcomes Study 36-item Short Form Health Survey, WHOQOL-BREF e escalas Beck. Outras informações (sexo, idade, estado civil, número de habitantes na mesma casa e suporte psicológico) foram avaliadas. O coeficiente de correlação de Spearman foi utilizado na análise estatística. Foi adotado um nível de significância de 5%. RESULTADOS: Os resultados obtidos por meio de questionários são os seguintes: desesperança moderada identificada em 20% dos cuidadores (quanto maior o número de moradores por domicílio, maior o nível de desesperança do cuidador); 33,33% demonstraram ansiedade moderada e grave; 46,67% depressão moderada e grave; a qualidade de vida relacionada à saúde de cuidadores de pacientes com PCT mostrou-se abaixo da média mundial; não foram observados números significativos de potencial suicida. CONCLUSÃO: A QVRS dos cuidadores de pacientes com PCT alimentados por gastrostomia está abaixo da média da população geral. Nossos resultados são muito semelhantes aos encontrados em outros estudos que avaliaram cuidadores de pacientes com paralisia cerebral com diferentes graus de comprometimento neurológico e sem relato de alimentação por gastrostomia, sugerindo que a presença da gastrostomia não interferiu negativamente na QVRS dos cuidadores.

Calidad de vida en adultos institucionalizados con parálisis cerebral infantil / Quality of life in institutionalized adults with cerebral palsy

INTRODUCCION: La parálisis cerebral es considerada como un grupo de trastornos permanentes del desarrollo que originan limitaciones en la actividad diaria. Una de las complicaciones en las personas con parálisis cerebral es la disminución de la calidad de vida. OBJETIVO: El objetivo de este estudio es conocer la calidad de vida de las personas adultas institucionalizadas con parálisis cerebral infantil y conocer si existen diferencias en el índice de calidad de vida en función de las características funcionales. MÉTODO: Estudio observacional descriptivo trasversal en personas adultas institucionalizas con parálisis cerebral infantil realizado en los centros APCA y ASPROPACE entre marzo y septiembre de 2017. Se administró el cuestionario San Martín para medir la Calidad de Vida, Gross motor classification system, cuestionario Barthel, Escala CFCS para medir función motora, dependencia física, nivel de comunicación y relacionarlas con variables sociodemográficas y clínicas. La selección de los participantes se llevó a cabo mediante un muestreo estratificado aleatorio. Se contó con la aprobación de las direcciones de los centros. RESULTADOS: Participaron 39 personas con edad media de 32,54 años. La puntuación media global del cuestionario San Martin fue de 102,97 puntos. Las dimensiones más afectadas fueron bienestar material, desarrollo personal e inclusión social. No se obtuvo significación estadística en la puntuación global del cuestionario en función de las variables secundarias. CONCLUSIONES: Los resultados de este estudio han demostrado que la Calidad de vida de adultos con parálisis cerebral en los sujetos estudiados es buena

INTRODUCTION: Cerebral palsy is considered a group of permanent developmental disorders that causelimitations in daily activity. One of the complications in people with cerebral palsy is the decrease inquality of life. OBJECTIVE: The objective of this study is to know the quality of life for institutionalized adults with infantile cerebral palsy and to know if there are differences in the quality of life index based on functional characteristics. METHOD: Cross-sectional descriptive observational study in institutionalized adults with infantile cerebralpalsy performed in the APCA and ASPROPACE centers between March and September 2017. The San Martín questionnaire was administered to measure the Quality of Life, Gross motor classification system, Barthel questionnaire, Scale CFCS to measure motor function, physical dependence, level ofcommunication and relate them with sociodemographic and clinical variables. The selection of the participants was carried out by random stratified sampling. It was approved by the centers' addresses. RESULTS: Participants were 39 people with an average age of 32.54 years. The overall average score ofthe San Martin questionnaire was 102.97 points. The most affected dimensions were material wellbeing, personal development and social incluison. No statistical significance was obtained in the overall score of the questionnaire based on the secondary variables. CONCLUSIONS: The results of this study have shown that the quality of life of adults with cerebral palsy inthe subjects studied is good

A willing existence: the care of the mother to the child/adolescent with cerebral palsy / Uma existência solícita: o cuidado da mãe à criança/adolescente com paralisia cerebral

To understand the care of the mother to the child/adolescent with cerebral palsy. A qualitative study with a hermeneutical phenomenological approach based on Heidegger and Ricoeur. It was developed with ten mothers of child/adolescent with cerebral palsy who attend an Association of Parents and Friends of Special of a city located in the north of the State of Rio Grande do Sul/Brazil. The information was collected through the phenomenological interview, from April to June 2015 and was interpreted with the hermeneutics of Ricoeur. The results showed that the mother of the child/adolescent with cerebral palsy reorganized her life in order to dedicate herself exclusively to the care of the child, offering her the maximum of existential possibilities. The being-in-the-world of these mothers is to be-with the child in a bond so intense that the mother in many moments is understood as part of the corporality of the son. Due to the range of complex care that the mother dedicates to the child/adolescent with cerebral palsy, it is necessary that the health professionals, especially the nurse, put themselves in the presence of the mother, and taking care of it as a way of being in care.

Compreender o cuidado da mãe à criança/adolescente com paralisia cerebral.Estudoqualitativo com abordagemfenomenológica hermenêutica baseada em Heidegger e Ricoeur. Foi desenvolvido com dez mães de criança/adolescente com paralisia cerebral, que frequentam uma Associação de Pais e Amigos dos Excepcionais de uma cidade localizada ao norte do estado do Rio Grande do Sul/Brasil. A coleta das informações por meio da entrevista fenomenológica, ocorreu no período de abril a junho de 2015 e foram interpretadas com a hermenêutica de Ricoeur. Os resultados mostraram que a mãe da criança/adolescente com paralisia cerebral reorganiza sua vida a fim de dedicar-se exclusivamente ao cuidado do filho, ofertando-lhe o máximo de possibilidades existenciais. O ser-no-mundo destas mães é ser-com o filho em uma ligação tão intensa que a mãe em muitos momentos se compreende como parte da corporeidade do filho. Devido a gama de cuidados complexos que a mãe dedica a criança/adolescente com paralisia cerebral, faz-se necessário que os profissionais de saúde, em especial o enfermeiro, coloquem-se como presença aproximando-se da mãe, percebendo-a e cuidando-a como modo de ser na solicitude.

Parenting stress and life satisfaction in mothers of children with cerebral palsy: The mediating effect of social support.

In this study, we investigated the mediating effect of social support on the relationship between parenting stress and life satisfaction in Chinese mothers of children with cerebral palsy (N = 369). The results showed that family support and friend support, but not significant-other support, had mediating effects on the relationship between parenting stress and life satisfaction. Moreover, the mediating effect of friend support was equal to family support. These results suggest that the focus should be on reducing parenting stress and increasing support from family and friends to help improve life satisfaction in mothers of children with cerebral palsy.

[Cerebral palsy associated urological pathologies. Nurse´s role.] / Patologias urologicas asociadas a paralisis cerebral. El rol de la enfermera.

OBJECTIVES: The objectives of this study were: To analyze the causes of urological consultation of the child with CP, to analyze the role of nursing in the urological care of children with CP referred to Urology, and to know the relationship between the child's urinary tract infection and CP and its degree of independence. METHOD: Retrospective analytical observational study based on the review of the clinical records of patients diagnosed with cerebral palsy. Forty-seven patients selected by simple randomization in an age range of 2 to 16 years were included in the study in an outpatient clinic for CP patients located in a town in northern Mexico. RESULTS: The causes of urological consultation of the child with CP, referred by nursing were: urinary infection, phimosis, retractable testicle, cryptorchidism, hypogonadism, overactive bladder, and hypospadias. The relationship between the urinary infection of the child with CP and its degree of independence was established with the level of urinary sphincter control. CONCLUSIONS: The nursing staff is a key and decisive factor in the diagnosis, early reference for treatment and monitoring of the evolution of urinary disorders in children with CP. It is not indicated to start a toilet training program in children with CP, without having previously ruled out a urinary tract infection.

OBJETIVOS: Los objetivos de este estudio fueron: analizar las causas de consulta urológica del niño con Parálisis Cerebral (PC), analizar el rol de enfermería en el cuidado urológico de niños con PC referidos a Urología, y conocer la relación entre la infección urinaria del niño con PC y su grado de independencia. MATERIAL Y METODO: Estudio observacional analítico retrospectivo en base a la revisión del expediente clínico de pacientes con diagnóstico de parálisis cerebral. Se incluyeron en el estudio a 47 pacientes seleccionados mediante aleatorización simple en un rango de edad de 2 a 16 años en una clínica de atención ambulatoria para pacientes con PC, ubicada en una población del norte de México. RESULTADOS: Las causas de consulta urológica del niño con PC, referidos por enfermería fueron: infección urinaria, fimosis, testículo retráctil, criptorquidia, hipogonadismo, vejiga hiperactiva, e hipospadias. La relación entre la infección urinaria del niño con PC y su grado de independencia se estableció con el nivel de control de esfínter urinario. CONCLUSIONES: El personal de enfermería es factor clave y decisivo en el diagnóstico, referencia temprana para tratamiento y vigilancia de la evolución de los trastornos urinarios en niños con PC. No está indicado iniciar un programa de control de esfínteres en niños con PC, sin haber descartado antes una infección urinaria.

Patologias urologicas asociadas a paralisis cerebral. El rol de la enfermera / Cerebral palsy associated urological pathologies. Nurse's role

Objetivos: Los objetivos de este estudio fueron: analizar las causas de consulta urológica del niño con Parálisis Cerebral (PC), analizar el rol de enfermería en el cuidado urológico de niños con PC referidos a Urología, y conocer la relación entre la infección urinaria del niño con PC y su grado de independencia. Material y método: Estudio observacional analítico retrospectivo en base a la revisión del expediente clínico de pacientes con diagnóstico de parálisis cerebral. Se incluyeron en el estudio a 47 pacientes seleccionados mediante aleatorización simple en un rango de edad de 2 a 16 años en una clínica de atención ambulatoria para pacientes con PC, ubicada en una población del norte de México. Resultados: Las causas de consulta urológica del niño con PC, referidos por enfermería fueron: infección urinaria, fimosis, testículo retráctil, criptorquidia, hipogonadismo, vejiga hiperactiva, e hipospadias. La relación entre la infección urinaria del niño con PC y su grado de independencia se estableció con el nivel de control de esfínter urinario. Conclusiones: El personal de enfermería es factor clave y decisivo en el diagnóstico, referencia temprana para tratamiento y vigilancia de la evolución de los trastornos urinarios en niños con PC. No está indicado iniciar un programa de control de esfínteres en niños con PC, sin haber descartado antes una infección urinaria

Objectives: The objectives of this study were: To analyze the causes of urological consultation of the child with CP, to analyze the role of nursing in the urological care of children with CP referred to Urology, and to know the relationship between the child’s urinary tract infection and CP and its degree of independence. Method: Retrospective analytical observational study based on the review of the clinical records of patients diagnosed with cerebral palsy. Forty-seven patients selected by simple randomization in an age range of 2 to 16 years were included in the study in an outpatient clinic for CP patients located in a town in northern Mexico. Results: The causes of urological consultation of the child with CP, referred by nursing were: urinary infection, phimosis, retractable testicle, cryptorchidism, hypogonadism, overactive bladder, and hypospadias. The relationship between the urinary infection of the child with CP and its degree of independence was established with the level of urinary sphincter control. Conclusions: The nursing staff is a key and decisive factor in the diagnosis, early reference for treatment and monitoring of the evolution of urinary disorders in children with CP. It is not indicated to start a toilet training program in children with CP, without having previously ruled out a urinary tract infection

Assessment of pain, care burden, depression level, sleep quality, fatigue and quality of life in the mothers of children with cerebral palsy.

The aim of this study were to evaluate pain, care burden, depression level, sleep quality, fatigue and quality of life (QoL) among a group of mothers of children with cerebral palsy (CP) and to compare their results with a group of healthy controls. The study involved 101 mothers who had children with CP and 67 mothers who had a healthy child as the control group. Pain, care burden, depression level, sleep quality, fatigue and QoL of all the participants were evaluated by the numerical rating scale, the Zarit care burden scale (ZCBS), the beck depression inventory (BDI), the Pittsburgh sleep quality index (PSQI), the checklist individual strength (CIS) and the short form-36 (SF-36), respectively. Numerical rating scale value was 3.57 ± 2.96 in the patient group. When the two groups were compared, the CP group showed higher scores for ZCBS, BDI, PSQI, total CIS and SF-36 subscales of general health and vitality whereas the scores for role physical, role emotional, mental health and mental component summary were found to be lower in the patients, compared to the control group. Reducing caregiving burden of the mothers' by other family members and increasing psychosocial supports may help improve the mother's health status.

A systematic review of the association between coping strategies and quality of life among caregivers of children with chronic illness and/or disability.

BACKGROUND: Parents of children with chronic illness have reported decreased psychological and physical quality of life (QoL) relative to parents of children without such illness, which may be associated with the extent of complexity involved in the caregiving role. Given that coping strategies have been reported to influence QoL, our goal was to synthesize existing research about the association between coping strategies and QoL in caregivers of children with chronic illness. We were particularly interested in whether coping strategies may mediate the association between caregiving complexity and QoL, or may modify the association. METHODS: We developed an electronic search strategy to identify relevant citations in Medline, EMBASE, PsycINFO and CINAHL. Two reviewers independently assessed retrieved citations against pre-specified inclusion criteria in two stages of screening. One reviewer abstracted data on study characteristics, methods to address confounding, measurement tools, risk of bias, and results with respect to associations of interest. A second reviewer validated extracted data. We summarized results narratively. RESULTS: 2602 citations were screened and 185 full-text articles reviewed. The 11 articles that met inclusion criteria addressed 5 diseases and included a total of 2155 caregivers. Ten of the 11 included studies were cross-sectional. We identified some evidence that coping was associated with QoL: in three studies, coping strategies considered to be adaptive were positively associated with psychological QoL while in one study, maladaptive strategies were negatively associated with psychological QoL. Only two studies considered coping as a potential mediating variable in the association between caregiving complexity and parental QoL, with inconsistent findings and challenges in interpreting cross-sectional associations. No studies considered coping as a moderating variable. The variability among instruments used to measure key constructs, particularly coping strategies, made it difficult to synthesize results. CONCLUSIONS: We found that coping strategies may be associated with psychological QoL among parents of children with chronic illness. We also identified important research gaps related to the consistent and clear measurement of coping strategies and their prospective association with QoL. Understanding how coping strategies are associated with QoL is important to inform the development of interventions to support families of children with chronic illness.

The Unmet Needs of Parents of Highly Dependent Children with Cerebral Palsy.

The overall care for children with cerebral palsy (CP) is challenging to the family which causes significant impacts to their livelihood. There is limited qualitative research that reports the unmet needs of parents with physically disabled children, especially highly dependent CP. The aim of this study was to explore the unmet needs of parents of highly dependent children with CP. A qualitative study using semi-structured face to face interviews was carried out among nine parents of children with CP with gross motor classification function score (GMFCS) levels III, IV, and V. The interviews were tape-recorded and transcribed verbatim. Transcribed data was analysed using thematic analysis method. Several unmet needs were highlighted by the parents; namely the needs in receiving information regarding CP conditions, getting psychological and financial support and explaining the child's condition to strangers. In addition, parents expressed the need for better support from the social welfare department, as well as in effectively organising family functioning. The findings of this study indicate that there is a need for the healthcare professionals to develop suitable strategies to assist the parents of highly dependent children with CP in fulfilling their specific needs. The role of relevant agencies should be optimised in addressing this area of concern.

Madre-cuidadora de niño/adolescente con parálisis cerebral: El cuidado de sí misma / Mãe-cuidadora de criança/adolescente com Paralisia Cerebral: o cuidar de si / The Mother-caregiver of child/teenager with Cerebral Palsy: taking care of herself

El cuidado de sí mismo permite a la persona integrar las diversas etapas de la vida de una manera saludable en los aspectos físicos, emocionales y espirituales. Objetivo: Comprender cómo la mujer-madre de niño/adolescente con Parálisis Cerebral toma el cuidado de sí misma. Método: Un estudio cualitativo con un enfoque fenomenológico/hermenéutico realizado en la Asociación de Padres y Amigos de niños excepcionales en un municipio del sur del estado de Rio Grande do Sul/Brasil, con diez madres/cuidadoras de niños y adolescentes con parálisis cerebral, entre abril y junio de 2015. Para la recogida de información se utilizó la observación participante y la entrevista fenomenológica, la interpretación por medio del enfoque de la hermenéutica. Con respecto a las consideraciones éticas, la investigación fue aprobada por el Comité de Ética de la Facultad de Medicina de la Universidad Federal de Pelotas, Opinión N 1.001.573. También se presentó, leyó y se entregó el Formulario de Consentimiento Libre e Informado (ICF). Resultados: El cuidado de sí misma de la mujer-madre está vinculado al cuidado del niño/adolescente. Refiere que el cuidar de sí misma, a veces significa cuidar de la salud, pudiendo estar relacionado con el tratamiento de belleza, menciona, también, no cuidar de sí misma a no ser en el momento del baño, y, aun así, el hijo está junto a ella. Conclusión: El estudio aporta contribuciones a la práctica de la enfermera para subsidiar estrategias capaces de facilitar a estas mujeres el cuidado de sí mismas, al ayudarlas en el proceso de adaptación a la nueva situación, y en el proceso de cuidar del niño/adolescente

O cuidar de si possibilita a pessoa integrar as várias fases da vida de maneira saudável nos aspectos físicos, emocionais e espirituais. Objetivo: Compreender como a mulher-mãe de criança/adolescente com Paralisia Cerebral cuida de si. Método: Estudo qualitativo, com abordagem fenomenológica/hermenêutica, realizado na Associação de Pais e Amigos dos Excepcionais em um município ao sul do Rio Grande do Sul/Brasil, com dez mães/cuidadoras de crianças/adolescentes com paralisia cerebral, entre abril e junho de 2015. Para a coleta de informações utilizou-se observação participante e entrevista fenomenológica, a interpretação por meio da abordagem hermenêutica. Quanto às considerações éticas, a pesquisa foi aprovada pelo Comitê de Ética em Pesquisa da Faculdade de Medicina da Universidade Federal de Pelotas, Parecer nº 1.001.573. Também foi apresentado, lido e entregue o termo de Consentimento Livre e Esclarecido (TCLE). Resultados: O cuidar de si da mulher-mãe está atrelado ao cuidado da criança/adolescente. Refere que cuidar de si, por vezes, significa cuidar da saúde, podendo estar relacionado ao tratamento da beleza, menciona ainda, não ter cuidado consigo a não ser no momento do banho, e, mesmo assim o filho está junto. Conclusão: O estudo traz contribuições à prática da enfermeira ao subsidiar estratégias capazes de facilitar a estas mulheres o cuidar de si, ao auxilia-las no processo de adaptação à nova situação e no processo de cuidar a criança/adolescente

The care for oneself allows the person to add the various stages of life in a healthy way in the physical, emotional and spiritual aspects. Objective: To understand how the woman-mother of child/teenager with Cerebral Palsy takes care of herself. Method: A qualitative study with a phenomenological-hermeneutical approach held in the Association of Parents and Friends of Exceptional Children in a municipality located in the south of Rio Grande do Sul, Brazil, with ten mothers/caregivers of children/adolescents with cerebral palsy, between April and June 2015. For the collection of information there was used the participant observation and phenomenological interview, the interpretation by means of the hermeneutical approach. With regard to ethical considerations, the research was approved by the Ethics Committee of the Medical School of the Federal University of Pelotas, Opinion N 1,001,573. It was also presented, read and delivered the word of Informed Consent Form (ICF). Results: The care for herself the woman-mother is tied to the care for the child/adolescent. It refers to taking care of herself, sometimes means taking care of the health, which may be related to the treatment of beauty, mention yet, not taking self-care unless at the time of the shower, and, even so, the son is next. Conclusion: The study brings contributions to the practice of nurse to subsidize strategies for these women of taking care of themselves, to assist them in the process of adaptation to the new situation and in the process of taking care of the child

Caregivers' experiences of feeding children with cerebral palsy: a systematic review protocol of qualitative evidence.

REVIEW QUESTION/OBJECTIVE: The overall objective of this systematic review is to identify, critically appraise and synthesize the literature regarding the feeding experiences of caregivers who care for children with cerebral palsy. The specific review question is: What are the experiences of caregivers feeding children with cerebral palsy?

Evolution of self-care and functional mobility after single-event multilevel surgery in children and adolescents with spastic diplegic cerebral palsy.

AIM: To explore the evolution of self-care and functional mobility after multilevel surgery in children and adolescents with spastic diplegic cerebral palsy and to identify factors affecting these outcomes. METHOD: Thirty-four participants (22 males, 12 females) were evaluated before surgery, and at 2 months, 6 months, 1 year, 18 months, and 2 years after surgery. Self-care was assessed with the Pediatric Evaluation of Disability Inventory Dutch edition. The Mobility Questionnaire47 (MobQues47) and Functional Mobility Scale (FMS) were used to measure functional mobility. RESULTS: All outcomes revealed a significant decrease 2 months after single-event multilevel surgery (SEMLS) (p-value between <0.001 and 0.02) followed by a significant increase at 6 months (p<0.001 and p=0.045). Between 6 months and 1 year, a significant increase was also revealed for Mobques47 (p<0.001), FMS (p≤0.008), and the Pediatric Evaluation of Disability Inventory Functional Skills Scale (PEDI-FSS) (p=0.001). Improvement continued until 18 months for the PEDI-FSS. Initial score, initial muscle strength, Gross Motor Function Classification System level, age, and number of surgical interventions significantly influenced time trends for self-care and/or functional mobility. INTERPRETATION: Most preoperative scores are regained at 6 months after SEMLS. Further improvement is seen until 18 months. Participants with a higher functional level before surgery will temporarily lose more than participants with lower initial functional ability, but they also fast regain their function. WHAT THIS PAPER ADDS: Self-care and functional mobility decrease significantly in the first months after single-event multilevel surgery (SEMLS). Six months after SEMLS most preoperative scores are regained. Impact of SEMLS is more pronounced for functional mobility than for self-care. Muscle strength and functionality at baseline are important influencing factors on the evolution after SEMLS.

Caregiver Difficulties Scale (CDS): Translation and Psychometric Evaluation Among Iranian Mothers of Cerebral Palsy Children.

The aim of this study was to investigate of psychometric properties of the Caregiver Difficulties Scale (CDS) for Iranian caregivers of children with cerebral palsy (CP). After a forward-backward translation, the Persian version of CDS (P-CDS) was administered to 151 Iranian mothers of CP children. The confirmatory factor analysis (CFA) was applied to measure the factor structure of P-CDS. The reliability was evaluated by examining internal consistency and test-retest method over a 2-week period using Cronbach's alpha and the intraclass correlation coefficient (ICC), respectively. The construct validity was assessed by measuring the association between the scores of the P-CDS and Caregiver Burden Scale (CBS), World Health Organization Quality of Life (WHOQOL-BREF), the Beck Depression Index (BDI II), and the Fatigue Severity Scale (FSS). The fit indices showed that the original model of CDS was relatively adequate (χ2/df = 2.03, CFI = 0.90, TLI = 0.88 and RMSEA = 0.08). All domains of P-CDS met the minimum reliability standards (Cronbach'salpha and ICC > 0.7). All subscales of P-CDS were positively correlated with the CBS, BDI-II and FSS and negatively correlated with the WHOQOL-BREF. The results showed that P-CDS is a valid and reliable measure for assessing the burden of care in Iranian mothers of CP children.