Anxiety, depression, and support needs of the mothers of children with cerebral palsy and determining their opinions: Mixed methods study.

PURPOSE: This study aimed to determine the level of anxiety, depression, support needs and opinions of mothers of children with cerebral palsy. DESIGN AND METHODS: The study used a descriptive qualitative design. The population of the study consisted of children with cerebral palsy who were educated in special education centers in a province of Eastern Turkey. All participants who volunteered for the study were accepted and the study was completed with 126 mothers. RESULTS: Caregiver mothers with male cerebral palsy patients had higher carer support needs and anxiety total mean scores. The mean scores of depression and anxiety of the mothers who were older were statistically higher. This study found that mothers of children with diseases other than cerebral palsy had statistically higher mean depression scores. The mothers of child with cerebral palsy who had a high gross motor classification score had higher mean carer support needs, depression, and anxiety total scores. CONCLUSIONS: According to the study, depression and trait anxiety were linked to greater maternal support needs. Qualitative interviews revealed that mothers experienced issues such as stigmatization and withdrawal from social activities as a result of their children's illness. PRACTICE IMPLICATIONS: This study shows the relationship of need for support of mothers of children with cerebral palsy and mental problems such as depression and trait anxiety. Pediatric nurses should provide emotional support to mothers and guide them towards support groups and training programs.

[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.

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.

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.

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.

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.

Professionals' Perceptions about the Need for Pain Management Interventions for Children with Cerebral Palsy in South African School Settings.

Pain is common in children with cerebral palsy (CP) and may have negative consequences for children's success in their studies. Research has shown that pain in childhood negatively influences individuals' participation and quality of life in later years. This study investigated how professionals in South African school settings respond to children's need for pain management in an attempt to enable the children to be active participants in school activities, despite their pain. The study was descriptive and followed a qualitative design (i.e., focus group interviews with semistructured questions and a conventional content analysis). Five government schools for children with special education needs in South Africa's Gauteng province participated. Participants/Subjects: Thirty-eight professionals who represented eight professions. Professional statements on the topic were collected from five focus group sessions conducted during one week. Qualitative content analysis of the data was performed. Similar statements were combined, coded, and sorted into main categories and subcategories. The analysis identified three main categories for pain management: environmental, treatment, and support strategies. In addition, four groups of statements emerged on how contextual factors might affect pain in children with CP and their participation in school settings. It is important to train professionals in pain management and to implement structured models for pain prevention and management to ensure that best practices are adhered to for children with CP who suffer from acute or chronic pain.

German translation of the caregiver priorities and child health index of life with disabilities questionnaire: test-retest reliability and correlation with gross motor function in children with cerebral palsy.

We aimed to translate the Caregiver Priorities and Child Health Index of Life with Disabilities (CPCHILD) questionnaire into German and to evaluate its reliability and validity by studying the association between CPCHILD scores and gross motor function as measured by the gross motor function classification system (GMFCS) in children with cerebral palsy (CP). The original CPCHILD questionnaire and manual were translated and back translated. It was administered to primary caregivers of persons with CP (GMFCS levels III-V) and was completed a second time 2 weeks after the first to measure test-retest reliability (n = 17). Primary caregivers of 68 children with CP; GMFCS level III (n = 14), level IV (n = 28), and level V (n = 26) completed the questionnaire. Mean total CPCHILD scores across GMFCS levels were 67.1 ± 14.9 for GMFCS level III, 56.6 ± 11.8 for level IV, and 44.3 ± 12.9 for level V. Good correlation (r = - 0.56) was observed between GMFCS and total scores test-retest reliability showed intraclass correlation coefficients between 0.4 and 0.9. The German CPCHILD yielded similar test-retest reliability and score distributions across the GMFCS level as the original version. The best correlations were observed for domains that are close to the functional deficits.

Social support provided to caregivers of children with cerebral palsy.

OBJECTIVE: To describe the perception of caregivers of children with cerebral palsy (CP) concerning social support received and to verify how the characteristics of the children (i.e. type of CP and severity of motor impairment) and those of their caregivers (i.e. age, level of education, occupation, income and number of children) are significantly related to this perception. METHOD: A total of 50 children with CP aged between 3 and 12 years and their respective caregivers participated in this study. Children were grouped in terms of type of CP and according to the severity of motor impairment through the Gross Motor Function Classification System (GMFCS). The Social Support Questionnaire (SSQ) was used to evaluate the perception of caregivers concerning the social support they receive (number of people offering support - SSQ-N index, and level of satisfaction concerning such support - SSQ-S index). RESULTS: The caregivers reported receiving support from a mean of 1.67 people. Core and extended family members (i.e. husband, mother, siblings) and friends are the most common providers of support. In regard to level of satisfaction, caregivers considered the support they received to be positive, obtaining a mean of 5.52 out of a total of six points. Children's and caregivers' characteristics were not significantly related to the SSQ-N and SSQ-S indexes. CONCLUSION: Family members are the caregivers' primary source of social support and caregivers reported being satisfied with the support they received.

The MM-CGI Cerebral Palsy: modification and pretesting of an instrument to measure anticipatory grief in parents whose child has cerebral palsy.

AIMS AND OBJECTIVES: To establish the potential of a modified version of the MM-CGI Childhood Cancer to assess anticipatory grief in parents of children with cerebral palsy, to amend the existing scale for use with the specific patient group, to test the psychometric properties of the modified version (MM-CGI Cerebral Palsy) and to review the clinical potential of the new scale. BACKGROUND: Parents of children with cerebral palsy may experience reactions similar to parents of children with other enduring or life-limiting conditions, and anticipatory grief may be one such psychological reaction. While the burden of caring is sometimes balanced by positive perceptions of the child, which enhance coping ability, for many parents the outcome is damage to their physical and mental health and impaired family functioning. DESIGN: A cross-sectional, descriptive, correlational design. METHODS: The MM-CGI Cerebral Palsy was administered in structured interviews with 204 parents. Standardised measures of caregivers' depression, stress and perceived social support were also administered. Mothers and fathers were recruited from healthcare centres and schools for special education. Cronbach's alpha was used to assess internal consistency, and Pearson's product-moment correlation was used to assess construct validity. RESULTS: The subscales were each found to measure a single dimension of anticipatory grief, and significant correlations were established with existing instruments. The instrument demonstrated excellent internal consistency reliability and good construct validity. CONCLUSIONS: The MM-CGI Cerebral Palsy could be useful for diagnosing anticipatory grief among parents of children with cerebral palsy. This preliminary work moves the programme on to testing in intervention studies. RELEVANCE TO CLINICAL PRACTICE: In the absence of an existing measure for the assessment of anticipatory grief, specifically in parents of children with cerebral palsy, the MM-CGI Cerebral Palsy could prove to be an effective assessment tool for clinicians and researchers.

The social context of occupations: analysis of a father feeding his daughter diagnosed with cerebral palsy.

The purpose of this article is to examine a father feeding his daughter who is diagnosed with cerebral palsy in order to identify the contexts that make this occupation significant. The analysis of direct observation and interviews demonstrates significant moments where two individuals make intersubjective connections. Themes that are presented are the Intensity of Mealtime, Connections Between Participants, and Adapted Forms of Communication. Both the difficulties and rewards of mealtime are illustrated within these themes. This analysis reveals the structure and importance of doing together in influencing and determining occupations. From a clinical perspective, the meaningfulness of fathering occupations highlights the importance of including fathers in family-centered care.

Predictors of psychological adjustment, experienced parenting burden and chronic sorrow symptoms in parents of children with cerebral palsy.

AIM: To investigate the role of child behaviour, parental coping and experiential avoidance in predicting the psychological outcomes of: (i) psychological symptoms; (ii) chronic sorrow symptoms; and (iii) experienced parenting burden in parents of children with cerebral palsy (CP). METHOD: This study is a cross-sectional, correlational study. Ninety-four parents of children (aged 2-12 years) with CP (various levels of motor functioning GMFCS I-V) participated. RESULTS: Together, the three predictors of child behaviour, parental coping and experiential avoidance explained 36.8% of the variance in psychological symptoms with child behavioural problems and experiential avoidance as significant unique predictors. In addition, 15.8% of the variance in chronic sorrow symptoms was explained by the three predictors with experiential avoidance alone as a significant unique predictor. Lastly, the predictors together explained 24.3% of the variance in experienced parenting burden with child behavioural problems and experiential avoidance as significant unique predictors. CONCLUSIONS: This study demonstrates a relationship between child behavioural problems and parental psychological symptoms and experienced parenting burden as well as a relationship between experiential avoidance and parental psychological symptoms, experienced parenting burden and chronic sorrow symptoms.

A different life: caring for an adolescent or young adult with severe cerebral palsy.

Mothers of children with severe functional disabilities often assume roles that exceed the normative activities of parenting in relation to the intensity, complexity, and temporal nature of the family caregiver experience. This phenomenologic inquiry explored the lived experience of caregiving among mothers caring for an adolescent or young adult with severe cerebral palsy. Data were collected through semi-structured interviews with 11 mothers and analyzed using van Manen's approach. Analyses revealed four interrelated essential themes related to managing an unexpected life, balancing caregiver demands, assuming advocacy roles, and facing an uncertain future. Findings suggest the need for improved supports and services to optimize family caregiving during this transitional period of family life.

The development and validation of an instrument to assess caregiver burden in cerebral palsy: Caregiver Difficulties Scale.

OBJECTIVES: To develop a valid and reliable instrument to assess caregiver burden in caregivers of children with cerebral palsy (CP). METHODS: A self-administered, multidimensional instrument--Caregiver Difficulties Scale (CDS)--was developed using a combined qualitative-quantitative approach. Items for the preliminary draft were selected from existing caregiver assessment instruments by consensus of experts or key informant interviews with caregivers and service providers of children with CP. Standard item reduction techniques based on responses of 50 caregivers were used to develop the 25 item final draft of CDS. Multidimensionality of CDS was established by exploratory factor analysis, using responses of 125 caregivers. Construct validity of CDS was confirmed by assessing correlations between CDS score and two other constructs: 'Caregiver quality of life' and 'Severity of disease in the care recipient' in a sample of 90 caregivers. Internal consistency and reliability of CDS were assessed using Cronbach's alpha and test/retest reliability. RESULTS: A new instrument (CDS) was developed with four subscales measuring caregiver's concerns for child, impact on self, support for caregiving and social and economic strain. Face validity, content validity and consensual validity of CDS was established through the process of item generation. Caregiver quality of life and severity of disease in care recipient demonstrated significant moderate to high correlations (r ≥ 0.3) with scores of CDS, confirming construct validity. Both internal consistency and reliability of CDS were satisfactory. CONCLUSIONS: CDS is a valid and reliable instrument to assess caregiver burden among caregivers of children with cerebral palsy in Sri Lanka.

Being concerned: caregiving for Taiwanese mothers of a child with cerebral palsy.

AIMS AND OBJECTIVES: This article explores the Chinese social context and provides insight into Taiwanese mothers' challenging experiences when a disabled child is born into their families. BACKGROUND: International research indicates that barriers to maternal caregiving for a disabled child revolve around challenging relationships. Giving birth to a disabled child creates a huge challenge for mothers in Chinese society. DESIGN: Data were collected using in-depth interviews and journaling methods. A hermeneutic phenomenological approach, informed by the philosophical world views of Heidegger and Gadamer, provided theoretical guidance in revealing and interpreting mothers' experiences. METHOD: Interviews were carried out with a purposeful sample of 15 mothers who were primary caregivers for a child aged between 0-18 years who was diagnosed with cerebral palsy and used Mandarin or Taiwanese as their primary language. RESULTS: Shared meanings revealed four modes of being concerned: (1) experiencing burden as a sole primary caregiver; (2) managing the challenges by balancing demands; (3) being marginalised by others; and (4) encountering limited or no professional support. CONCLUSIONS: Taiwanese mothers face the strain of managing barriers to caregiving in contexts in which their children are not supported or acknowledged as being important contributors to family and Chinese society at large. This study highlights how the family can be important to caregiving mothers in traditional Chinese family life. Poor support and dynamics will emerge when family members regard disability as a loss of face or a stigma. RELEVANCE TO CLINICAL PRACTICE: By learning from Taiwanese mothers who accommodate barriers to caregiving on a daily basis, nurses can seize the impetus to explore ways of reconceptualising nursing practice with families and people with disabilities. The aim is to explore ways that will ultimately align intentions and caring processes and foster coping and positive reward in caring, thereby creating a context that is stress reducing and therapeutic.

Application of the M technique to two severely disabled children in Belarus.

Following the early-morning explosion of reactor four at the Chernobyl nuclear plant on 26 April 1986, radioactive fallout fell over 80% of Belarus. More than 2.2 million people were affected, including thousands of children. As a result, there are now over 50,000 children in 600 orphanages in Belarus. Many of the orphanages are without basic amenities and are operating in dire circumstances. This article outlines two case studies of orphaned children with profound disabilities in one of these orphanages. The first author, a nurse volunteer from Ireland, used a method of touch called the 'M technique' to calm and soothe the children. The M technique is a gentle repetitive method of touch that can be learnt in a few hours. The results suggest that even when the situation appears very challenging, simple touch can have a beneficial effect.

Life decisions of Taiwanese women who care for a sibling with cerebral palsy.

We used a phenomenological method to examine how the caregiving experiences of Taiwanese women who care for a sibling with cerebral palsy (CP) influence their life decisions. In-depth qualitative interviews were conducted with six adult women, each of whom self-identified as being the sister most involved in caring for a sibling with CP. Themes emerging from caregivers' experiences were caring through interpretation, caring through protection, and caring through sacrifice. These ways of caring created unique considerations and tensions that appeared to have a profound effect on the women's major life decisions.

The role of magnesium sulfate in the prevention of cerebral palsy.

Magnesium sulfate (MgSO4) has been widely used in the perinatal arena for many decades. It has been used for tocolysis in the U.S. for more than 60 years. Estimations of MgSO4 use for preterm labor (less than 34 weeks of gestation) run as high as 80 percent. Magnesium sulfate is a smooth, skeletal, and cardiac muscle depressant. It is used for preterm labor because of its potential to decrease muscle contractility by interfering with calcium uptake in the cells. Thousands of moms and babies have been exposed to this medication even though tocolysis remains an off-label use, the exact mechanism of action is not completely understood, and there are studies that show that it is ineffective for this indication, and no evidence that it improves perinatal outcomes.1-3 Additionally, it is a high alert medication because of its narrow therapeutic window and the risk of causing an immediate life-threatening condition (acute respiratory failure) if an error in administration occurs.4.