Article

With a little help from my friends: Psychological, endocrine and health corollaries of social support in parental caregivers of children with autism or ADHD

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Abstract

Elevated psychological distress and concomitant dysregulation of the hypothalamic-pituitary-adrenal (HPA) axis has been implicated as one pathway that links the stress of caregiving with adverse health outcomes. This study assessed whether perceived social support might mitigate the psychological, endocrine and health consequences of caregiver stress in parents of children with autism and attention deficit hyperactivity disorder (ADHD). Parental caregivers completed measures of psychological distress, perceived availability of social support and physical health complaints. To capture important parameters of the basal diurnal cortisol pattern, caregivers collected salivary cortisol at waking, 30 min post waking, 1200 h and 2200 h on two consecutive weekdays. Psychological distress and self reported physical health complaints were inversely related to scores on all support subscales: tangible, belonging, self esteem and appraisal. Results further revealed a significant, positive association between magnitude of the cortisol awakening response (CAR) and caregivers' self esteem. As a buffer between the stress of caregiving and adverse physical health outcomes, social support acts to reduce stress appraisals and mitigate disturbances of the HPA axis. Moving forward, intervention programmes might seek to increase caregivers' perceived availability of social resources.

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... Additionally, these caregivers are more susceptible to common illnesses such as coughs and colds, as well as mild aches and pains that drive them to visit doctors more frequently [14][15][16][17]. On a physiological level, it appears that slight changes in endocrine and immune processes may be a mediator of poorer physical health among caregivers of children with ASD [15,[18][19][20][21]. ...
... As subjective measures are prone to biases and lapses in reporting, there is a need for more objective measures of caregiver wellbeing and sleep quality. Together with the findings relating caregivers' physical and psychological health with physiological changes in endocrine processes [15,[18][19][20][21], a potential method of investigation is by using cortisol as biomarker of caregiver stress and sleep. Cortisol secretion follows a diurnal pattern that is negatively affected by sleep problems such as short sleep duration. ...
... Questions in CARS-2 focus on interpersonal relations, the use of body and objects, affective response, imitation, adjustment to change, and visual and listening response. Total scores range from 15 to 60, where the lowest score range (15)(16)(17)(18)(19)(20)(21)(22)(23)(24)(25)(26)(27)(28)(29)(30) indicate no or minimal signs of autistic behaviour. The categories are followed by mild-to-moderate signs of autistic behaviour (30)(31)(32)(33)(34)(35)(36) with the highest range indicating strong signs of autistic behaviour. ...
Article
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Caregivers of children with autism spectrum disorder (ASD) experience poorer sleep, but studies have not yet used objective measures to investigate how child and caregiver sleep affect each other. In this study, 29 mothers and their child with ASD aged between 6 and 16 years were recruited. Questionnaires measuring child autism, maternal depression, and maternal and child sleep quality were administered. Cortisol salivary samples were also obtained from the mothers over the course of a day. Results revealed that maternal depression is significantly correlated with their subjective sleep quality, sleep latency and daytime dysfunction. Child sleep quality was also found to be significantly correlated with ASD severity. In terms of maternal cortisol profiles, a significant number of mothers showed a flattened diurnal cortisol expression, and children of mothers with a flattened cortisol profile had significantly more sleep problems. Overall, results suggest that maternal and child sleep are affected by the child’s disability but also are mutually related. Future studies may consider employing measures such as actigraphy or somnography to quantify sleep quality and establish causal pathways between sleep, cortisol expression and caregiver and child outcomes. The present study has clinical implications in examining family sleep when considering treatment for ASD.
... [21] Psychological stress was inversely related to perceived social support. [22] Few other studies explore the influence of various socio-demographic variables and its correlation with stress in parents of intellectually disabled children. [23] Income is found to be clinically significant with stress among parents of children's with intellectual disability. ...
... The role of social support as a mediating variable between income and stress was found significant in the study. [22] Conclusion Stress has become an integral part of life. The condition of stress is developed within the environment. ...
Preprint
Parents of children with intellectual disability put more care and effort in raising their children. The perceived stress faced by this segment of parents is more than that of the parents with normal child. It is therefore essential for the caregivers to release their burden to perform normal care giving functions. The objective of the study was to determine the effect of socioeconomic demographics and social support on the perceived stress of parents of children with intellectual disability. The study was conducted in Chhattisgarh state among 100 parents of children with intellectual disability. Perceived stress scale and Social support scale were the tools used in the study for data collection. Purposive sampling technique was the method adopted in the study for the selection of samples in the study. Multiple hierarchal regression analysis was used to test the proposed model. Structural equation modeling (SEM) was used to further confirm the mediating effect of social support on income and stress. Result indicated that socio-demographic variables income, education and gender significantly contributed to the variation of stress and showed negative association with stress. However age did not contribute significantly in the variation of stress. Result of mediating effect of social support showed significant association between income and stress.
... [21] Psychological stress was inversely related to perceived social support. [22] Few other studies explore the influence of various socio-demographic variables and its correlation with stress in parents of intellectually disabled children. [23] Income is found to be clinically significant with stress among parents of children's with intellectual disability. ...
... The role of social support as a mediating variable between income and stress was found significant in the study. [22] CONCLUSION Stress has become an integral part of life. The condition of stress is developed within the environment. ...
Article
Full-text available
Parents of children with intellectual disability put more care and effort in raising their children. The perceived stress faced by this segment of parents is more than that of the parents with normal child. It is therefore essential for the caregivers to release their burden to perform normal care giving functions. The objective of the study was to determine the effect of socio-economic demographics and social support on the perceived stress of parents of children with intellectual disability. The study was conducted in Chhattisgarh state among 100 parents of children with intellectual disability. Perceived stress scale and Social support scale were the toolsused in the study for data collection. Purposive sampling technique was the method adopted in the study for the selection of samples in the study. Multiple hierarchal regression analysis was used to test the proposed model. Structural equation modeling (SEM) was used to further confirm the mediating effect of social support on income and stress. Result indicated that socio-demographic variables income, education and gender significantly contributed to the variation of stress and showed negative association with stress. However age did not contribute significantly in the variation of stress. Result of mediating effect of social support showed significant association between income and stress. © 2019, Indian Journal of Public Health Research and Development. All rights reserved.
... 66,67 Parents of children with ASD report more anxiety, depression, and distress compared with parents of children without ASD, 63 and parents themselves may be affected by ASD symptoms, which has been linked to increased parenting stress. 68 Some studies have found blunted cortisol responses, 63,69,70 and some, 71 but not all, 63 have found elevated blood pressure in caregivers of children with developmental disabilities. Headache, backache, muscle soreness, and fatigue may also be commonly reported. ...
... 66 Caregiver positivity, lower stress levels, and increased social support, particularly in the form of friends and family members providing no-cost assistance to caregivers whose children do not live independently, 74 have been linked to better outcomes for caregivers. 70,74,75 Rigorous studies that examine caregiver burden as individuals with ASD enter mid-and late-adulthood are limited. ...
Article
Children with autism spectrum disorder (ASD) eventually grow up and need to make the transition from pediatric services to adult. This is a diverse patient population.
... Caring for a child with a developmental disability (DD) (e.g., autism, Down syndrome, attention deficit hyperactivity disorder -ADHD) has been associated with elevated stress and decreased health and well-being (Benson, 2014;Hastings & Johnson, 2001;Miodrag, Burke, Tanner-Smith, & Hodapp, 2015;Woodman, Mawdsley, & Hauser-Cram, 2014). This vulnerable group of parents not only report greater incidence of stress, this has been implicated in back problems, migraine headaches, stomach/intestinal ulcers, asthma, arthritis/rheumatism, and high blood pressure in these parental carers (Gallagher & Hannigan, 2014;Gallagher & Whiteley, 2012;Gallagher & Whiteley, 2013;Woodman et al., 2014); this caregiving is also linked with a range of other health related risks factors, such as a poorer immune and poor hormonal health (Gallagher, Phillips, Drayson, & Carroll, 2009;Lovell, Moss, & Wetherell, 2012) and cognitive impairment (Lovell, Elliot, Liu, & Wetherell, 2014). ...
Article
Predictors of depression over time were examined in parental carers of children with developmental disabilities (DD) and parents of typically developing children (controls) who participated in the Growing up in Ireland Study. Parents completed measures of depression, the Centre for Epidemiological Depression Scale (CES-D) and child problem behaviours, the Strength and Difficulties Questionnaire when the children were aged 9 (Wave 1) and 13 (Wave 2). Using CES-D cut-off scores to indicate probable depression, caregivers were more likely to be depressed at both waves compared to controls with a Wave 1 rate of depression of 14.6% vs. 7.9% (p < 0.001, Cramer`s V = 0.059) and Wave 2 (14.8% vs. 10%, p = 0.003, Cramer`s V = 0.038). While overall rates of depression were stable for caregivers, a shifting pattern emerged; 59.6% of those who were depressed at Wave 1, were not at Wave 2; similarly, 10.9% who were not depressed at Wave 1, were at Wave 2. Parents of children with DD were also more likely to report greater problem behaviours in their children compared to controls at both waves. Depression in caregivers at Wave 1 and persistent child problem behaviours were significant predictors of depression at Wave 2. In conclusion, while overall rates of depression remain stable in caregivers, there are shifting patterns evident with prior depression and persistent behaviour problems predictive of ongoing depression.
... Moreover, Lovell et al. [19] reported that caregivers of autism experience high level of burden which resulted in multidimensional psychological and physical health problems. These problems can be more associated with some personal characteristics of caregivers, e.g., older age or male gender. ...
... In-school adolescents who had support from their peers were also protected from experiencing suicidal plan and attempt. The findings regarding close friends and peer support highlight the role of social support in mitigating the adverse effects of mental health challenges on the psychosocial development of adolescents [47][48][49]. Our finding could be because adolescents mostly turn to their close friends as their source of emotional, financial, advice and other possible supports during a time of crisis or need [50,51]. ...
Article
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Introduction: Despite interventions by low and middle-income countries toward the achievement of the global Sustainable Development Goal (SDG) on promoting mental health and well-being of their populace by the year 2030, suicidal behaviours continue to be major causes of premature mortality, especially among young people. This study examined the prevalence and predictors of suicidal behaviours among in-school adolescents in Mozambique. Materials and methods: This was a cross-sectional study of 1918 in-school adolescents using data from the 2015 Global School-based Health Survey (GSHS) of Mozambique. The outcome variables (suicidal ideation, suicidal plan, and suicidal attempt) were measured with single items in the survey. Both bivariate and multivariate analyses were performed using chi-square test of independence and binary logistic regression respectively. Results are presented as Adjusted Odds Ratios for the binary logistic regression analysis. Statistical significance was set at p<0.05. Results: The prevalence of suicidal behaviours 12 months prior to the survey were 17.7%, 19.6% and 18.5% for suicidal ideation, suicidal plan, and suicidal attempt respectively. Adolescents who experienced anxiety had higher odds of suicidal ideation [AOR = 1.616, 95%CI = 1.148-2.275], suicidal plan [AOR = 1.507, 95%CI = 1.077-2.108], and suicidal attempt [AOR = 1.740, 95%CI = 1.228-2.467]. Adolescents who were physically attacked in school were also more likely to ideate [AOR = 1.463, 95%CI = 1.115-1.921], plan [AOR = 1.328, 95%CI = 1.020-1.728], and attempt [AOR = 1.701, 95%CI = 1.306-2.215] suicide. Having close friends was, however, an important protective factor against suicidal ideation [AOR = 0.694, 95%CI = 0.496-0.971], plan [AOR = 0.625, 95%CI = 0.455-0.860], and attempt [AOR = 0.529, 95%CI = 0.384-0.729]. Peer support also reduced the risk of suicidal ideation [AOR = 0.704, 95%CI = 0.538,0.920] and plan [AOR = 0.743, 95%CI = 0.572,0.966] among the in-school adolescents. Conclusion: Suicidal behaviours constitute major public health challenges among in-school adolescents in Mozambique. The behaviours are predominant among adolescents who are physically attacked and those who experience anxiety. Conversely, having close friends serves as a protective factor against suicidal behaviours. To ensure that Mozambique meets the SDG target of promoting the mental health of all by the year 2030, the Government of Mozambique and educational authorities should urgently design and implement innovative interventions and strengthen existing ones that seek to address physical attacks and anxiety among in-school adolescents. School administrations should also incorporate programmes that seek to congregate students and offer platforms for social interaction and cohesion.
... Essentially, family support, parent group support, school support have become important social supports for parents, which have played important roles in aiding parents of children with ASD to successfully cope with their struggles (e.g. Ekas et al. 2010, Lovell et al. 2012, Tehee et al. 2009, Weiss et al. 2013. ...
Article
Background: Parenting children with autism spectrum disorder (ASD) continues to be challenging worldwide, especially in the Chinese context where there lacks support for parents. Method: Five parents of children with ASD of high level of resilience in China were interviewed about their experiences of raising children with ASD and influencing factors of developing resilience. Results: Findings highlighted the process of developing resilience shaping from the interaction between different social system, including introspect and self-cultivation in micro system, acceptance of ASD, playing various roles for their children, and expanded social network in the interactions between micro and mezzo systems and accept the worst results in the interactions between micro and macro systems. The characteristics of resilience for Chinese parents of children with ASD were that parents built positive relationships with themselves and outsides though active interaction and changed their social environment as an outcome. Conclusion: The results of this study may reveal the process and characteristics of resilience for Chinese parents having children with ASD, which can be a starting point for other parents to understand and learn from them. Besides, it provides insight for service providers into paying attention to the whole experience of parents and help them to expand the relative network to support them.
... As Myers and Johnson (2007) noted, support groups can be perceived by participants as an opportunity to acquire knowledge and skills while sharing and bonding with others. The social support provided by other parents of autistic children can improve parental well-being (Catalano, Holloway, & Mpofuet, 2018;Derguy, Michel, M'Bailara, Roux & Bouvard, 2015;Hock, Yingling and Kinsman, 2015;Lovell, Moss & Wetherell, 2012;Samadi, McConkey & Kelly, 2012). ...
Article
Lay abstract: The recent increase of diagnosed cases of autism spectrum disorders has led to a considerable rise in the demands for autism-related services and interventions. Caring for an autistic child can be perceived as an enrichment, which coexists with stress in parents. Parents express the need to access relevant information about their child's difference, and parent support interventions appear to respond effectively to this demand, as they are knowledge-focused and offer indirect support to the child. The aim of this study was to capture the subjective experience of facilitators who implemented a psychoeducational program called Beyond PDD: Parental Skills within My Reach. This program is based on the acknowledged fact that parents of autistic children play a central role in their child's development. Its main goal is to help parents of autistic children under the age of 8 to identify, develop, and update their parenting competences. This program broaches different topics: (1) specific features of an autistic child, (2) post-diagnostic parental adjustment, (3) communication and social relationships, (4) importance of providing the child with a structured environment, and (5) parental emotions and perceptions that impact everyday life. Structured interviews of the facilitators provided insight on institutional support, issues related to the program itself, required and/or recommended professional background, personal experience and competences, and difficulties linked to recruitment and research criteria. Recommendations aiming to enhance program implementation and delivery were then created using facilitators' feedback on these aspects.
... When parent training programs are proposed in groups, the costeffective ratio is more advantageous (Bearss et al. 2015a(Bearss et al. , 2015bBrookman-Frazee et al. 2006), which is an important element for choosing an intervention (Shepherd et al. 2018). Furthermore, the social support provided by other parents of children with ASD in these groups is a factor that can improve parental well-being (Catalano et al. 2018;Derguy et al. 2015;Hock et al. 2015;Lovell et al. 2012;Samadi et al. 2012). ...
Article
Full-text available
Parents of children with autism spectrum disorder (ASD) risk higher levels of stress and a lower quality of life compared to parents of typically developing children. Few parent training programs focus on parenting outcomes, and few authors evaluate the implementation fidelity of their program. A systematic review was conducted to target studies assessing the effects of group training programs on the stress levels or quality of life of parents of children with ASD as well as the implementation fidelity. A total of 12 studies were identified. Findings suggest that mindfulness could be a promising parent training tool to improve the well-being of parents of children with ASD.
... There are sensory issues to consider, educational decisions to be made, medical interventions, safety concerns, and therapeutic decisions, to name just a few [62]. More often than not, these children also have accompanying health conditions and self-regulation difficulties. ...
Article
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Aim: The aim of this paper is to exploratory research support on Families with Autistic Children. Objective research is needed for identifying helpful resources and helping families with autistic children. Methods: The approximated number of participants that answered the questionnaire are 406 people and consists of men and women. Process data collection is through the research which circulated to participants consisting of families with autistic children. After the research was ends and data already gathered, the researcher will access data achieved forcleaning data and then data will be analysed. Results: The results revealed four support resources is a best social support that is spouses (husband/wife), another child, grandparents, and doctors as the percentage of support provided are very high compared to support from other sources. To achieve the objective, researchers have identified the "helpful" and " very helpful" support of the autism family as a result of the research findings. If seen, these four groups have a great influence on the lives of parents while managing their children with autism. Conclusion: Parents or guardians have identified many positive and supportive aspects that really help them at all levels of support available. To meet the needs of these autism children, parents or guardians need to find the best source of support to produce quality attitudes that are caring, knowledgeable and caring in other communities. Parents or guardians specifically require the support of outsiders as the support is flexible and can find dynamic needs to meet the needs of families with these autism children.
... The support could be formal (therapists or support groups) or informal (family and friends). Prior research has shown that parents of children with disabilities who report having high social support also report having better physical and mental health (Cantwell et al, 2014;Lovell et al, 2012;Peer and Hillman, 2014). ...
Technical Report
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OVERVIEW We looked at the effects of three social determinants-community conditions, emotional support, and family resilience on the mental and physical health of mothers of children with complex special health care needs. Mothers across all race and ethnicity groups who reported having formal or informal emotional support, fewer adverse neighborhood conditions, and more family resilience also reported having better mental and physical health. This highlights the importance of social determinants in both physical and mental health. It also highlights the importance of recognizing family context when designing policies and practices for family caregivers.
... Moreover, in several qualitative studies and literature reviews, caregivers have highlighted the value of resourcefulness for coping with caregiving related challenges, like CPB (Bayat 2007;Bekhet et al. 2012;Foo et al. 2015), and benefit finding has been shown to positively predict resourcefulness in caregivers of children with ASD, and in other caregiving populations (Bekhet 2013;Bekhet and Garnier-Villarreal 2018). Finding benefits amidst the negative sequelae of the caregiving experience has also been associated with increased social support, and socially supported caregivers of children with ASD, in addition to reporting lower distress (Lovell et al. 2012), feel better equipped to manage caregiving related challenges, like CPB (Freuler and Baranek 2016). Moreover, in studies involving other caregiving groups, such as caregivers of adults with chronic illness, benefit finding moderated the relationship between caregiving related burden and psychological distress. ...
Article
Full-text available
Caregivers of children with ASD often find benefits associated with their caregiving role, and benefit finding predicts lower distress. Child problematic behaviours (CPB), which positively predict caregivers’ distress, are perceived to be being less problematic, or more manageable, by caregivers who find benefits. Benefit finding therefore might mitigate the negative psychological impact of CPB. A sample of n = 158 caregivers of children with ASD completed an online survey assessing benefit finding, CPB, and psychological distress. CPB positively, and benefit finding negatively, predicted caregivers’ distress. Moderation effects however were not observed. Findings implicate increased CPB and lower benefit finding as risk factors for caregivers’ psychological distress. Findings provide clearly definable targets for intervention.
... These effects have been seen at both global (across months to year, e.g., Uchino, 2006) and daily (e.g., Gleason et al., 2008) levels. The receipt of positive emotional support has also been shown to be related to adaptive psychological and physical health in parents of children with neurodevelopmental disorders other than FXS such as autism spectrum disorder (ASD; Smith et al., 2012), ID (Gallagher & Whiteley, 2013) and attention deficit hyperactivity disorder (e.g., Lovell, Moss, & Wetherell, 2012). Positive emotional support may similarly play a role in resiliency for premutation carrier mothers of children with FXS. ...
Article
We examined the benefit of emotional support on daily health in premutation carrier mothers of adolescents and adults with fragile X syndrome ( n = 114), and whether this benefit was moderated by the mother's genetic status ( FMR1 CGG repeat length). In an 8-day daily diary, maternal daily health was assessed subjectively through self-reported number of physical health symptoms and physiologically via cortisol awakening response. Multilevel lagged-day models indicated that premutation carrier mothers with midrange CGG repeats derived less health benefit from a day with high positive emotional support than those with lower or higher numbers of repeats within the premutation range. The data support the influence of both genetic and environmental influences on the health of this population.
... For example, research among parents of children with attention deficit hyperactivity disorder in China has shown that parents reporting high levels of social support also report more psychological well-being (Ma et al., 2017). Social support among these parents has also been found to modulate physical health outcomes like blood pressure (Gallagher and Whiteley, 2012;Lovell et al., 2012). Besides these benefits, social support is also implicated in fostering and sustaining resilience among parents of children with special needs (Bekhet et al., 2012;Iacob et al., 2020). ...
Article
Full-text available
Background: While parenting a child with special needs is burdensome, some parents do overcome through protective resources. Social support has been widely linked to this unique ability to overcome the challenges of raising a child with special needs. In spite of this, there is still paucity of research about the influence of the sources of perceived social support on this ability, known as resilience. Aim: This study examined three sources of perceived social support—family, friends and significant other—on the resilience of Ghanaian parents raising children with special needs while adjusting for covariates (parental gender, marital status and educational level). Methods: One hundred and seven (107) biological parents were recruited from special schools and parents support groups in Accra, Ghana. They completed paper-and-pencil or online questionnaires on resilience and perceived social support. Results: Output from hierarchical multiple regression after adjusting for covariates showed that only support from significant others predicted resilience. Additionally, being married was positively and holding a higher education was inversely associated with resilience. Conclusion and implication: These findings indicate the importance of support from significant others in the resiliency of parents but underscore the need to fully integrate and emphasize support from the other sources in resilience enhancing interventions.
... Tak jarang ABK mendatangkan masalah tersendiri dalam keluarga baik dari masalah ekonomi, ketidakpedulian (ignorance) yang berujung penelantaran, dan tentunya masalah psikologis bagi keluarga termasuk gejala-gejala depresi (FAREO 2015). Beberapa penelitian menunjukan hubungan positif antara kesehatan mental khususnya gejala depresi dengan orang tua ABK (England et al., 2009;Lovell et al., 2012; Tabassum and Mohsin 2013) Depresi menurut Pedoman Penggolongan Diagnostik Gangguan Jiwa (PPDGJ) berarti suatu kondisi yang ditandai dengan gejala hilangnya minat (anhedonia), afek yang depresif dan kehilangan energi yang ditandai dengan cepat lelah (Maslim 2013). Dari suatu studi cross-secsional didapatkan bahwa orang tua dengan ABK memiliki tingkat kesehatan mental yang lebih buruk, gejala depresi yang lebih besar, dan memiliki keterbatasan lebih banyak dalam melakukan aktivitas sehari-hari dengan instrumen (instrumental activities of daily living/IADL) (Smith and Grzywacz 2014). ...
Article
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p> Anak berkebutuhan khusus (ABK) membutuhkan perhatian lebih di segala bidang, tak jarang mereka mendatangkan masalah tersendiri bagi keluarganya. Beberapa penelitian menunjukan hubungan positif antara orang tua ABK dengan gejala psikopatologi termasuk depresi. SLB Negeri Kendal merupakan SLB terbesar di Kabupaten Kendal yang memiliki kurang lebih 183 siswa dengan ABK baik tuna grahita, tuna netra, tuna rungu, dan tuna daksa. Penelitian tentang pengukuran tingkat depresi pada keluarga dengan ABK di SLB Negeri Kendal belum pernah dilakukan sebelumnya. Tingkat depresi diukur menggunakan Beck depression inventory (BDI). Sampling dilakukan dengan metode purposive random sampling dari wali murid (ayah, ibu, nenek, tante) Sekolah Dasar Luar Biasa (SDLB). Data demografi berupa hubungan responden dengan ABK, tingkat pendidikan dan pekerjaan, serta tingkat depresi ditampilkan dalam bentuk tabel dan pie chart. Penelitian ini melibatkan 54 responden yang memenuhi kriteria inklusi. Dari 54 responden didapatkan 46.3% (25/54) memiliki skor BDI normal, 29.6% (16/54) dengan gangguan mood ringan, 9.3% (5/54) dengan depresi borderline, 11.1% (6/54) dengan depresi moderat, dan 3.7% (2/54) dengan depresi berat. Mayoritas responden merupakan first degree relative (66.7% ibu dan 24.1% ayah). Kebanyakan dari responden merupakan lulusan SD (33.3%) dan mayoritas bekerja sebagai IRT (55.6%). Mayoritas keluarga ABK di SDLB Kabupaten Kendal pada penelitian ini tidak mengalami gejala depresi.</em
... One of the effective ways is to provide more available social support services. Social support refers to the perceived or actual assistance that an individual receives from another person or institution and can be in the form of either physical and instrumental assistance or emotional and psychological support (Boyd, 2002), which can effectively relieve the stress, upset, and anxiety of families of children with ASD, and then improve the life satisfaction (Dunn et al., 2001) as well as multiple domains of family functioning (Lovell et al., 2012). However, an investigation showed that the family internal support of children with autism was sufficient, but professional rehabilitation education information and education practice support were deficient, and the other social supports were severely deficient (Xiong et al., 2014). ...
Article
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p> The present study aimed at exploring the status of family cohesion, adaptability and quality of life of caregivers of children with ASD, as well as the relationship between family cohesion and adaptability, and quality of life. One hundred and sixty-three caregivers of children with ASD from Sichuan province in China were investigated by the Chinese vision of Family Adaptability and Cohesion Scale and Beach Center Family Quality of Life Scale . The results showed that: (1) The score on family cohesion of caregivers of children with ASD was higher than the national norm, and the score on family adaptability was lower than the national norm; (2) The satisfaction of quality of life wa s between general level and satisfactory level, and the score on satisfaction in e ach dimension from high to low was Family Interaction, Parenting, Disability-Related Support, Emotional Well-Being and Physical/Material Well-Being ; (3) Family cohesion and quality of life were significantly correlated, and adaptability and quality of life were also significantly correlated; (4) Caregivers with higher family cohesion and adaptability showed higher quality of life than the caregivers with lower family cohesion and adaptability; (5) Family cohesion and adaptability had a positive impact on quality of life. </p
... However when we examined the social and emotional support aspect across the contextual categories, we found that parents to children that are not mobile, have individual assistance and attend a special education class reported receiving lower social support than parents to children who are mobile, do not have individual assistance and study in a regular class. This may support the notion that the child's intensity of symptoms and especially less autonomy may trigger a greater need for support in parents (Lovell et al. 2012). ...
Article
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The present study examined the quality of parent–child relationships as reported by 383 parents of chronically ill children. The medical condition category, child’s mobility, education type and childcare assistance were examined. Parents answered the Parent–Child Relationship Inventory (PCRI). In addition, 45 parents of chronically ill children were interviewed. The results indicated a significant difference in most aspects of the PCRI (limit setting, promotion of autonomy, communication, satisfaction and involvement) across medical condition categories. Further child variables (mobility, assistance and education type) had an effect on the PCRI subscales as well. Interview analysis revealed a difference in the reported quality of parent–child relationships between medical conditions categories. Parents of mentally ill children primarily felt anger and guilt in their relationship with their ill children, whereas parents of children with cancer and autoimmune disease primarily felt depressed. Our results suggest the need for further study of parent–child relationships in and between different chronic childhood medical conditions in an attempt to address parents’ and children’s needs in an optimal way.
... La ricerca del supporto sociale, come fonte di aiuto emotivo, informativo o pratico riconosciuto utile dalla famiglia, può influenzare positivamente la condizione dei genitori e l'attivazione dei trattamenti di cura adeguati. Il supporto (attraverso servizi, associazioni o l'aiuto di altre famiglie) stempera le preoccupazioni e il disorientamento e riduce i livelli di stress, migliorando efficacemente la qualità di vita dei genitori (Lovell, Moss e Wetherell, 2012); la perdita di controllo, invece, è associata a emozioni negative, bassa soddisfazione e alla sensazione di rimanere intrappolati nelle proprie responsabilità familiari. ...
... Among a number of factors that can attenuate the individual's psychological distress, social support is the one that has been most investigated. Indeed, a considerable body of research has documented the critical role of social support as a key predictive factor for the effective coping and psychological well-being of parents raising a child with autism (Ekas et al., 2010;Gena, 2006;Lovell et al., 2012;Weiss et al., 2013), as it has been associated with lower levels of psychological distress (Bromley et al., 2004;Lindsey & Barry, 2018) and depressive symptoms in parents of children with autism (Ekas et al., 2010) or lower stress levels in general (Bitsika & Sharpley, 2004;Ekas et al., 2010;Sharpley et al., 1997). That said, little is known about the relation between the social support provided to the family and the presence of depressive symptoms among the TD siblings of autistic children. ...
Article
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Lay abstract: Typically developing siblings of children with autism spectrum disorders are often found to exhibit elevated levels of stress and depressive symptoms compared to siblings of typically developing children or siblings of children with other disabilities. Besides the behavioral problems of the child with autism and certain demographic characteristics that have been recognized as factors associated with typically developing siblings' psychological distress, the role of parental mental health and the social support from the family has not been studied sufficiently. The goal of this study is to assess depressive symptoms in 85 Greek school-aged typically developing siblings of children with autism and to investigate for any associations between siblings' depressive symptoms on one hand and demographics, parental mental health, and perceived social support on the other hand. It was found that typically developing siblings had higher levels of depressive symptoms compared to children from a general population sample. In addition, parental anxiety and social support from the family as perceived by the parents themselves were identified as independently associated with typically developing siblings' depressive symptoms. Of note, perceived social support failed to attenuate the association between parental anxiety and siblings' depressive symptoms. These results highlight the importance of assessing both parental and typically developing siblings' psychological state to implement interventions addressed to the needs of all family members.
... Satisfaction with informal supports may play a crucial role in impacting family resilience in the context of raising a child with ASD. Previous research has demonstrated that satisfaction with informal support networks is a significant predictor of improved physical health (Gallagher & Whiteley, 2012;Lovell et al., 2012) and mental health functioning (Benson & Karlof, 2009;Bromley et al., 2004;Khanna et al., 2011), and has been shown to reduce stress (Renty & Roeyers, 2007;Ruiz et al., 2014). However, despite these findings, numerous studies have reported that families of children with ASD tend to report poorer quality of life and lower levels of social support and friendships (Weiss, 2002). ...
Article
The current study examined the role of informal supports in predicting resilience among families of children with autism spectrum disorder. Participants included 153 caregivers of children with autism spectrum disorder, who were between the ages of 2 and 18 years ( M = 10.45; SD = 4.32). Caregivers completed a measure of satisfaction with informal supports as well as the Family Resilience Assessment Scale-autism spectrum disorder. After controlling for demographic factors and child behavioural problems, regression analyses revealed that satisfaction with informal supports significantly predicted family resilience. The findings highlight the importance of specifically strengthening informal support networks when providing services and interventions to families of children with autism spectrum disorder to foster the family’s resilience. Lay abstract The study of resilience among individuals with disabilities and their families represents a paradigmatic shift from a deficits orientation towards a more holistic and contextualized approach focused on strength and adaptation. The current study investigated whether informal supports could help improve families’ capacity for resilience. We recruited 153 caregivers of children aged between 2 and 18 years who all had a diagnosis of autism. Participants were asked to complete surveys assessing resilience in their families as well as their satisfaction with informal supports (e.g. friends and family). Families more likely to report higher satisfaction with their informal support networks demonstrate greater resilience. The results suggest that informal social supports are a valuable resource for families in strengthening their capacity for resilience. The findings may help inform the development of interventions and services that work collaboratively and innovatively with families and their social networks to provide assistance and support in meaningful and effective ways.
... It is reasonable to assume that the effort and vigilance needed to hide a child's diagnosis, presenting a "business as usual" image, requires an over-abundance of energy and could, as such, affect parental burden. Moreover, concealment limits the concealer's ability to be aided by those in his/her life (Corrigan, Kosyluk, & R€ usch, 2013), whereas a stable and supportive social network has been shown to improve parents' well-being and functioning (Ann Davis, 2005;Armstrong, Birnie-Lefcovitch, & Ungar, 2005;Lovell, Moss, & Wetherell, 2012 ...
Article
Parents of children with psychiatric disorders who are hospitalized in a psychiatric unit often experience family burden. Family burden has been found to be affected by many variables related to parents' personal traits and ways of reacting to the disorder. The current study examined the association between information coping styles (monitoring and blunting) and family burden, among parents of children who were hospitalized in a day care unit. The possible role of self-stigma as a mediator between coping style and family burden and the role of self-concealment as a moderator between coping style and self-stigma were examined. A total of 41 parents completed questionnaires assessing their levels of self-stigma, information coping style, self-concealment, and family burden. Self-stigma was found to mediate the positive association between the monitoring coping style and family burden. Moreover, a moderation effect of self-concealment was found, indicating that monitoring parents suffered from higher levels of self-stigma particularly if they had a high tendency toward self-concealment. Taking into account parents' information, coping style, self-stigma, and self-concealment can help professionals tailor family interventions according to parents' diverse needs. A monitoring coping style may not be beneficial especially when combined with concealment, suggesting the need to promote other coping styles.
... Another study conducted on parents of children with complex needs reported that parents struggled significantly more to manage their child's psychosocial needs instead of their physical limitations, resulting in them becoming mentally drained; an estimated 40% of them show signs of psychiatric distress (Thurston et al. 2011). Due to their poor mental well-being, these parents were also more susceptible to a plethora of physical health problems such as headaches, insomnia, muscle pains, high blood pressure, arthritis and stomach ulcers (Gallagher and Whiteley 2012;Lovell et al. 2012). Poor parental mental and physical health deserve attention because they directly affect children's health outcomes (Karazsia and Wildman 2009). ...
Article
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Parents of children with developmental disabilities are susceptible to mental health problems. Mindfulness-based and acceptance and commitment therapy (ACT)-based interventions can improve their mental well-being. This review examined the effectiveness of mindfulness-based and ACT-based interventions in improving mental well-being and mindfulness among parents of children with developmental disabilities. Six electronic databases were searched, resulting in the inclusion of ten studies published between 2014 and 2020. Meta-analysis was conducted using the random-effect model. The results suggest that mindfulness-based and ACT-based interventions were effective in decreasing parental stress, anxiety and depression, however, the effectiveness of these interventions in increasing parental mindfulness was inconclusive. Based on these findings, we discussed considerations for implementing interventions and identified areas which warrant further research.
... Caring for autistic children requires adjustment in the day to day activities of their parents because of the special medical and educational requirements of ASD children. Therefore such parents experience psychological and physical health challenge (Lovell, Moss, & Wetherell, 2012 )) they have also being known to be stigmatized (Mak & Kwok, 2010). This stigma creates difficulties to find information and service system related to child's disabilities resulting in more and more stress and depression in parents as well as pressure in relationships, especially, between all family members (Mak & Kwok, 2010). ...
Article
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Primary caregivers of children living with Autism Spectrum Disorder carry the larger burden of care and they may feel a need to be with their child at all times so they experience stress, related to coping with the heavy load of care giving. The study assessed the relationship between the demographic characteristics of parents of autistic children and the Family Crisis Oriented Personal Evaluation Scales (F-COPES). The study employed a cross-sectional design. The respondents comprised of all the parents of autistic children at the autism centres. The parents demographic characteristics assessed are age, level of education, religion and marital status. Therefore four null hypotheses were generated and T-Test was used to analyse the relationship between the family oriented evaluation scale and the demographic characteristics. The results revealed that for the null hypothesis of no significant relationship between utilization of FCOPES and respondents age, the calculated p-value and r revealed 0.215 > 0.05 and-0.156< 1 respectively. Therefore the null hypothesis is upheld. Conclusively the study found no association between the demographic characteristics and the utilization of the family oriented evaluation scale. The implication being that regardless of the differences in the respondents' demographic characteristics, parents of autistic children can benefits from the use of reframing, passive appraisal, spiritual support, and mobilizing social support in child care.
... In addition to chronic psychological conditions, caregivers of children with disabilities also often experience physical health problems including frequent episodes of headaches, gastrointestinal symptoms, high rates of infection, back pain and heart problems (Gallagher & Whiteley, 2013;Lee et al., 2017;Lovell et al., 2012). ...
Article
Background Caregivers of children with disabilities often experience poor health. One way for caregivers to promote their own health may be to participate in physical activity (PA). Aims The purpose of this study was to examine the association between PA and psychological and physical health problems in caregivers of children with disabilities. Methods 2018 National Health Interview Survey (NHIS) data was used, and 890 household representatives were identified as caregivers of children with disabilities. Based on the national PA guidelines, caregivers were classified into three groups: inactive (IA), aerobically active (AA), and aerobically and muscularly active (AMA). Results Multivariable logistic regression indicated that the AMA group had a lower likelihood of reporting depression compared to the IA group (OR: 0.73 [95% confidence interval: 0.54, 0.98]). The AMA group also had a lower likelihood of reporting back pain and obesity compared to the IA group (OR:0.69 [95% confidence interval: 0.56, 0.84] and OR:0.63 [95% confidence interval: 0.52, 0.76], respectively). Conclusions The results of the current study suggest that caregivers of children with disabilities may benefit from PA, especially from the combination of aerobic and muscle-strengthening PA.
... It has been reported that home-based care of children with disabilities places psychological burdens, physical burdens (such as sleep disorders), and social constraints on the primary caregiver (usually the mother) (Bourke-Taylor et al., 2013;Cantwell et al., 2014;Dardas & Ahmad, 2015;Gallagher et al., 2010;Gallagher & Whiteley, 2013;Lovell et al., 2012;Raina et al., 2005;Yantzi et al., 2007). It has also been reported that the psychological and physical burdens on the caregiver are lesser when the child has few behavioral problems (Raina et al., 2005). ...
Article
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Purpose Social supports are critical to alleviate the psychological and physical burden of primary caregivers of children with disabilities. This study aims to (1) clarify how cerebral palsy in children affects caregiving burden of the mother, and (2) identify the social supports that can effectively reduce that burden. Design and methods This is a cross-sectional study in which mothers of children with cerebral palsy completed questionnaires and provided data regarding their child's condition, family support, social support usage, degree of satisfaction with supports, and caregiving burden. Results We analyzed responses from 1190 mothers. Support usage, particularly of home-visit nursing, home care, home-visit rehabilitation, and mobility support, was higher in severely burdened groups. However, the proportion of satisfaction with social support in groups with light or no burden were higher, particularly in home care, home-visit rehabilitation, training/treatment, and short stays. Mothers whose children have an intellectual disability and gross exercise ≥1 in addition to tube feeding or intravenous nutrition especially felt a strong sense of burden. The most effective measure in reducing mother's sense of burden was short stays. Conclusions Mothers with children who can move and have an intellectual disability felt more burden compared with mothers of bedridden children. The findings clarify that supports, such as home care and short stays, have a significant impact on reducing the mother's sense of burden. Practice implications Due to the large sample size, we believe that the results can inform efforts to increase social support for caregivers.
... considering that poorer quality of life in parents of children with autism has been associated with child behavioural difficulties and lack of social support 34 and social support acts to reduce stress appraisals in parents of children with ADHD and autism. 35 In a cross- and parents of children diagnosed with a psychological or physical difficulty reported higher levels of parental burnout and less social support. 41 As services adjust to new ways of working, it is essential to consider the impact which the COVID-19 pandemic has had on this cohort of parents to inform paediatric practice and appropriate supports. ...
Article
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Background: This longitudinal cohort study aimed to examine the impact of the first wave of the COVID-19 pandemic in Ireland on parents of children with externalising difficulties, in comparison to parents of such difficulties. Method: Parents of 159 children completed online self-report measures at three time points during the first wave of the COVID-19 pandemic; 1) Delay and Mitigation Phase (March 2020 - May 2020), 2) Reopening of Society Phase (June 2020 – July 2020), and 3) Wave 2 Case Acceleration Phase (September 2020 - October 2020). Participants were allocated to the Clinical group if they met the clinical cut off point on the Conduct or Hyperactivity/Inattention sub-scales of the Strengths and Difficulties Questionnaire at Time 1. Results: Parents of children with externalising difficulties experienced significantly higher levels of stress, lower levels of wellbeing, and engaged in higher levels of avoidant-focused coping strategies longitudinally. There was a significant difference between outcomes at the different phases of the COVID-19 pandemic, for stress related to parenting, personal/family stress related to the impact of the COVID-19, and type of coping strategies employed. Children with externalising difficulties, in comparison to children without externalising difficulties, showed significantly greater adjustment over time for behavioural and emotional difficulties, as reported by their parents. Conclusions: Results provide important information regarding the trajectory of psychological outcomes in parents of children with externalising difficulties over the first wave of the COVID-19 pandemic, highlighting the need for increased parental supports during, and after, the COVID-19 pandemic.
... And what were the factors accounted for? Some variables such as levels and sources of social support (such as from family members, neighbors, professionals, schools, etc.), severity of ASD symptoms, financial status, etc. have been found to be significantly related in coping with parenting stress in caregivers of children with ASD (Ilias et al., 2018;Tehee et al., 2009;Ekas et al., 2010;Lovell et al., 2012;Weiss et al., 2013;Mackintosh et al., 2012;Vohra et al., 2014). ...
Article
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Background: Previous studies showed that caregivers of children with autism spectrum disorder (ASD) and other developmental disorders had higher levels of parenting stress, anxiety and depression. In the present study, the author examined the caregivers' mental health and investigated the mediating role of social support between symptoms severity and parenting stress during COVID-19. Methods: During 20 March to 8 April 2020, 1932 caregivers of children and adolescents with ASD and other developmental disorders from China were enrolled to fill in a sociodemographic questionnaire, Depression, Anxiety and Stress Scale and Social Support Rating Scale. The author also collected children's disability severity symptoms and behavioral problems. Results: The results showed that 46.01% of the caregivers reported symptoms of depression, 44.67% showed anxiety and 44.62% showed stress during COVID-19 pandemic. Fathers were found to get more subjective support than mothers (P < 0.05). Caregivers who had the highest educational attainment had the most social support (P = 0.01). People who had the more household income showed the significantly lower levels of depression and anxiety (P < 0.05). The caregivers' employment status during COVID-19 was found significantly related with their depression, anxiety, stress and social support (P < 0.05). Limitations: This study has some limitations, such as it did not conduct the longitudinal analysis of variables before COVID-19. Conclusions: The findings showed that many caregivers experienced mental health problems during COVID-19. The author suggested to promote caregivers' engagement in functional social support and the behavioral interventions for their children to reduce the impact of stress, anxiety and depression.
... Así mismo, se evidencia que es necesario crear espacios de apoyo psicológico y educar en estrategias de afrontamiento adaptativas a las familias de personas con TEA, con el objetivo de mantener la unidad familiar y mejorar la calidad de vida de los padres o cuidadores. Así, se podrá aumentar la percepción de apoyo social, lo cual es importante pues dicho apoyo promueve la reducción del estrés y mitiga las alteraciones endocrinas (Cid- García, 2016;Higgins et al., 2005;Lovell et al., 2012). Se debe resaltar el hecho de que, en muchas ocasiones, los cuidadores de niños con TEA soportan un dolor intenso y continuo, debido al impacto que genera el cuidado de un niño con estas características. ...
Article
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Los cuidadores primarios de niños con autismo muestran menor calidad de vida, mayor sobrecarga y depresión. El objetivo del presente estudio es determinar la relación entre calidad de vida y sobrecarga en cuidadores primarios de niños con Trastorno del Espectro Autista (TEA) que asisten al Instituto para el desarrollo integral del niño autista. La presente investigación es de corte descriptivo, correlacional y transversal. La muestra, intencional y por conveniencia, estuvo conformada por 29 cuidadores primarios de niños y niñas con TEA. El análisis de la información, recolectada mediante la encuesta sociodemográfica, la escala de sobrecarga del cuidador de Zarit, la encuesta PHQ-9 y la encuesta SF-36, se llevó a cabo mediante el software de procesamiento estadístico SPSS, versión 21. No se evidenciaron alteraciones en las tres variables evaluadas. Los resultados se discuten a la luz de la literatura científica sobre el tema, y los hallazgos permitirán generar políticas públicas enfocadas en el cuidador, para diseñar y fortalecer programas de intervención familiar.
... In addition, in a recent systematic review, over half of studies exploring stress among families of children with severe DD found satisfaction with social support to correlate negatively with stress (Kyzar et al., 2012). Social support has also been shown to predict neuroendocrine functioning and increase cardiovascular health in caregivers of children with DD (Gallagher & Whiteley, 2012;Lovell et al., 2012). ...
Article
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The current exploratory study sought to develop and pilot a Facebook-delivered health-promoting self-care intervention for caregivers of children with developmental disabilities (DD). Survey and focus group methods were used to gain information about the participation of caregivers of children with DD in existing Facebook support groups and their experiences related to stress, self-care, and social support that would aid in intervention development. Results were used in concert with existing guidance to determine the content and targets of the intervention. Caregivers were recruited to participate in a Facebook group-delivered intervention focused on broad areas of self-care including physical health, psychological health, social health, and work health. The Facebook group-delivered intervention, designed to target these identified areas using social support, was piloted over an 8-week period with caregivers of children with DD. Across all variables, differences from pretest to posttest were statistically significant, with small to large effect sizes.
... Restrictions imposed on social meetings are of concern, considering that poorer quality of life in parents of children with autism has been associated with child behavioural difficulties and lack of social support 19 and social support acts to reduce stress appraisals in parents of children with ADHD and autism. 20 Research conducted in Italy during the COVID-19 pandemic found parents of children with externalising difficulties reported increased intensity and frequency in their children's behavioural difficulties, 23 and parents of children diagnosed with a mental or physical difficulty reported higher levels of parental burnout and less social support 24 . ...
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Background: This longitudinal cohort study aimed to examine the impact of the first wave of the COVID-19 pandemic in Ireland on parents of children with externalising difficulties, in comparison to parents of children without such difficulties. Method: Parents of 159 children completed online self-report measures at three time points during the first wave of the COVID-19 pandemic; 1) Delay and Mitigation Participants were allocated to the Clinical group if they met the clinical cut off point on the Conduct or Hyperactivity/Inattention sub-scales of the Strengths and Difficulties Questionnaire at Time 1. Results: Parents of children with externalising difficulties experienced significantly higher levels of stress, lower levels of wellbeing, and engaged in higher levels of avoidant-focused coping strategies longitudinally. There was a significant difference between outcomes at the different phases of the COVID-19 pandemic, for stress related to parenting, personal/family stress related to the impact of the COVID-19, and type of coping strategies employed. Children with externalising difficulties, in comparison to children without externalising difficulties, showed significantly greater adjustment over time for behavioural and emotional difficulties. Conclusions: Results provide important information regarding the trajectory of psychological outcomes in parents of children with externalising difficulties over the first wave of the COVID-19 pandemic, highlighting the need for increased parental supports during, and after, the COVID-19 pandemic. What is already known about this topic?: The COVID-19 pandemic has been associated with negative psychological outcomes in the general population. Parents of children with externalising difficulties experience poorer outcomes than parents of children without such difficulties, in pre-pandemic circumstances. What does this article add?: Over the first wave of the COVID-19 pandemic, parents of children with externalising difficulties experienced significantly higher levels of stress, lower levels of wellbeing, and engaged in higher levels of avoidant focused coping strategies. Children with externalising difficulties showed significantly greater adjustment over time for behavioural and emotional difficulties. These results highlight the need for services to support the psychological wellbeing of parents of children with externalising difficulties.
... Mothers of adolescents with ASD were found to devote more time to providing childcare and completing household work and less time participating in leisure activities than mothers of typically developing children (Smith et al., 2012), in addition, the limited time to work increases financial stressors on families and may also diminish parents' resources for both social and emotional support (Karst & Van Hecke, 2012). Familial, friends, or others providing social support for the parents in their daily struggle, appears to be one of the most crucial factors when raising a child with disabilities, as it acts to reduce the associated negative psychological and physiological effects (Ekas et al., 2016;Lovell et al., 2012). A study of parents to individuals with ASD found that informal social support partially mediated the connection between the parent's burden and his/her quality of life (Marsack & Samuel, 2017). ...
... Similar to studies of adults, we found that current life stress and social support influenced the CAR and the DS. Current life stressors, the availability of social resources, and anticipatory stress have previously been associated with the CAR (Fries et al., 2009;Gartland et al., 2014;Lovell et al., 2012;Proulx et al., 2017;Stalder et al., 2016;Williams et al., 2005). Similarly, DS is sensitive to emotional and psychosocial stress, with adverse psychosocial experience associated with a flatter DS (Adam & Gunnar, 2001;Adam et al., 2007;Doane et al., 2013). ...
Article
Current and early life stress (ELS) are associated with diurnal cortisol patterns, which themselves are associated with mental and physical health. The pubertal recalibration hypothesis suggests that the social environment can impact dysregulated cortisol patterns for previously ELS‐exposed youth as they transition through puberty. This study examined longitudinal change in cortisol awakening response (CAR) and diurnal slope (DS) across puberty as a function of ELS in infancy, current stress, and social support (N = 290, 7–17 years). The CAR and DS were examined thrice annually with an accelerated longitudinal design with nurse‐assessed puberty to assess associations between diurnal cortisol and pubertal recalibration with ELS and the current social environment. Exposure to ELS was associated with less steep DS but not changes in CAR, and no evidence of pubertal calibration was found. The DS became less steep for youth in later pubertal stages and as youth progressed through puberty. The CAR was steeper for youth in later pubertal stages. Across the cohort, current life stress and support were associated with changes in the DS and the CAR through the pubertal transition. The pubertal stage and the peripubertal and pubertal social environment may have important implications for adrenocortical functioning with or without exposure to ELS.
Article
Problem Caregivers of children with Autism Spectrum Disorder (ASD) report high levels of stress, social isolation, and poor mental health. Social and emotional support may buffer negative effects of stress for caregivers of children with ASD, however, those living in rural areas may be disadvantaged due to social isolation and increased distance from resources. This scoping review examined the literature regarding the mental health and impact of support for rural caregivers of children with ASD. Eligibility criteria Articles were limited to those available in the English language and conducted in a high income country. Articles had to include a population of rural caregivers of children with ASD and focus on caregiver mental health and/or the impact of support on caregiver mental health. Sample Searches were conducted with Embase, PubMed, CINAHL, ERIC, and PsycINFO and 22 articles were included. Results Study findings indicate overall poor mental health for rural caregivers of children with ASD. Formal and informal support appear to be beneficial in decreasing stress for rural caregivers of children with ASD. However, a few studies indicated that formal support may add stress to rural caregivers. Conclusion There is limited information regarding support needs and the impact of support services on the mental health of rural caregivers of children with ASD. Implications There is a need to increase access to support resources in rural areas for caregivers of children with ASD. Healthcare professionals, including nurses, can play a fundamental role in supporting, educating, and connecting caregivers to other support services.
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Background Worldwide, parents of children with psychological problems have poor psychological well‐being. However, the factors associated with psychological distress among parents living in the Arab world have yet to be established. Purpose The aim of this study was to investigate the correlates of psychological distress among parents who have children with psychological problems in Jordan. Methods A descriptive correlational design was utilized. A total of 228 parents recruited from seven centers serving children with psychological problems completed the study. The outcome variables were measured using the demographic questionnaire, the Multidimensional Scale of Perceived Social Support, and a psychological distress scale (Kessler 6 instrument). Results More than half of the parents in this study had severe levels of psychological distress. Parental psychological distress was significantly correlated with marital status, employment, and the type of childhood psychiatric disorder. Social support was significantly and negatively correlated with psychological distress among parents (r = −0.58; p < 0.01). Conclusion Tailoring specific interventions to support these parents is necessary considering the specific variables identified in the current study.
Article
A wealth of research indicates that social support positively influences parental and family well-being in families of children with disabilities; however, not all supportive efforts are positively received. This study employs the framework of relational turbulence theory to examine evaluations of social support from social network members among parents of children with Autism Spectrum Disorder (ASD). In a cross-sectional survey, ninety-four parents of children with ASD (47 heterosexual couples) reported a social network member to whom they disclose issues regarding their marriage and evaluated that network member’s support for their marriage and their parenting. Results of actor-only interdependence modeling demonstrated significant negative associations between husbands’ reported experience of relational turbulence and perceptions of the social network member as helpful with regard to their marriage and parenting their child with ASD. Wives’ relational turbulence was negatively correlated with their perception of the social network member’s parenting support, but not relationship support.
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Substantial evidence identifies mothers of children with a disability as having a higher risk for compromised health outcomes and lifestyle restrictions secondary to caring responsibilities. Healthy Mothers Healthy Families (HMHF) is an evidence informed health and empowerment group-based workshop program. Methods: HMHF features health education and lifestyle redesign content. Mixed methods evaluated the program. This paper presents a pretest-postest time series design to evaluate outcomes over 8 months. Results: Mothers reported significant change across 4 time points including participation in healthy activity (p = 0.017), depression, anxiety, stress symptoms (p = 0.017, 0.016, 0.037 respectively) and empowerment (p = 0.009). Conclusion: Coupled with qualitative findings, these results suggest that HMHF is effective at improving health and wellbeing outcomes for mothers of children with a disability.
Article
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The current study assessed whether reactions to diagnosis are associated with health status for mothers of children with autism spectrum disorder at the time of diagnosis, and whether such diagnostic-reaction resolution status is associated with changes in health status over time. A total of 84 mothers of children newly diagnosed with autism spectrum disorder, with stable reactions to diagnosis over a year, participated. Their perceptions of their physical and psychological functioning, and quality of life, were taken at the time of diagnosis and 1 year later. The mothers were also given the Reaction to Diagnosis Interview. Mothers who had an unresolved reaction to diagnosis had a worse health status in terms of their perception of the physical symptoms at the time of the diagnosis, and showed worsening levels of health over the period of a year, relative to mothers who had a resolved diagnostic status. These relationships were independent of other potential predictors of ill health in this sample. The findings point to the potential of the diagnostic process to negatively impact parental health. Given that this can have negative consequences for child prognosis, as well as parental health, there is a need to develop better understanding of the impacts of diagnostic practices.
Article
This study examines a promising new coping and parental competency (CPC) intervention for parents of children with special educational needs that targets parents' mental health outcomes. Coping and parental competency impact parents' mental health, but no studies have rigorously assessed whether CPC is an effective strategy for cultivating emotional wellness in these parents. A seven‐week skills‐based CPC parenting programme was developed and administered in groups. One hundred twenty‐four parents in Hong Kong were randomly assigned to the intervention group or the wait‐list control group. Parents in the intervention group (a) showed reductions in depression, anxiety, and stress, (b) used fewer emotion‐oriented coping strategies and (c) exhibited an increased sense of parenting competency compared to the wait‐list control group. The serial multiple mediation of emotion‐oriented coping and parental competence in the relationship between treatment condition and mental health outcomes was found to be statistically significant. The discussion highlights the potential usefulness of a CPC intervention for populations at risk for parenting and coping challenges.
Article
Objective There is increasing interest in the role of contextual factors in promoting well-being among parents of children with developmental disabilities. This study aimed to examine whether social network types moderate the impacts of having a child with a developmental disability on parents' health. Methods Using cross-sectional data from the Midlife in the United States survey (MIDUS 2 and Refresher cohorts), we analyzed a sample of 363 parents of children with developmental disabilities and 4919 parents of children without developmental disabilities. K-means cluster analysis was implemented to identify a social network typology. Modified Poisson and negative binomial regression models estimated the effect of having a child with a developmental disability and the typology on parents' physical health (self-rated health, number of chronic conditions) and mental health (self-rated mental health, major depression). Results The cluster analysis revealed two social network types. Parents of children with developmental disabilities were more likely to have “restricted/unsupported” networks, whereas parents in the comparison group were more likely to have “diverse/supported” networks. Social support was more important for differentiating the network types of parents of children with developmental disabilities, while social integration was more salient for the comparison group. Parents of children with developmental disabilities fared worse on all outcomes relative to parents of children without disabilities. However, the typology had a compensatory psychological effect; the diverse/supported network type conferred greater mental health benefits to parents of children with developmental disabilities than to those in the comparison group. The diverse/supported network type was also associated with better physical health, but the associations did not differ between the two parent groups. Conclusions The results of this study emphasize the importance of social determinants of well-being for those with exceptional parenting responsibilities. Strengthening social networks may have a particularly positive impact on such parents' mental health.
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Although the study of autism is burgeoning with important implications both for public health and society, there is little research exploring the experiences of raising a child with autism spectrum disorder (ASD) from the maternal perspective. The aim of this study was to investigate the lived experiences of mothers of children with ASD in Greece. Nine mothers of children with ASD were recruited and engaged in semistructured interviews. Transcripts of the interviews were analyzed using interpretative phenomenological analysis. Three interconnected themes were identified in the analysis: (a) emotional burden, (b) family burden, and (c) social burden. A key finding in the themes was the sense of burden, distress, and vulnerability experienced by the mothers. The findings provide valuable understanding of the experiences of mothers raising children with ASD in one of Europe’s medium-income countries. Further, results can be used by researchers, clinicians, mental health providers, and policy makers to address the unique needs of families caring for and supporting children with ASD.
Article
Background: Caregivers of children with autism spectrum disorder (ASD) has been shown to have unique mental health vulnerabilities that community support may buffer. Positive caregiver mental health can stimulate family resilience behaviors, such as strong communication and problem-solving. Further, community support has been found to be related to caregiver mental health, as well as improved child functioning. The current study aimed to investigate caregiver mental health as a mediator between community support and family resilience in families of a child with an autism spectrum disorder. Methods: Data obtained from caregivers of 654 children with a reported diagnosis of ASD were utilized from the 2016 National Survey of Children's Health (NSCH) public database. Results: Community support was positively correlated with family resilience and caregiver mental health. Bivariate correlations indicated significant positive associations between community support and family resilience. Caregiver mental health significantly partially mediated the relationship between community support and family resilience. Conclusions: The present study provided important insight into fostering caregiver health as a strategy to promote family resilience behaviors. Interventions designed to address family resilience behaviors among families of children with ASD should focus on ways in which to positively impact caregiver mental health.
Article
Resumo: A Internet pode ser uma fonte de apoio social que auxilia no aprimoramento de competências parentais. Objetivou-se analisar o panorama internacional das pesquisas que investigaram apoio social online entre cuidadores de crianças e jovens. O estudo consiste em uma Revisão Integrativa em Rede da Literatura (RIRL) que aborda a literatura como uma rede de associação de variáveis e a analisa com base na Teoria dos Grafos. A busca ocorreu em duas bases de dados e os estudos foram filtrados por meio de dois testes de relevância. Foram resgatados 36 artigos, cujos resultados foram convertidos em 53 variáveis, que foram categorizadas conforme suas relações. Considerando-se a recorrência de relações entre as variáveis, conclui-se que “Participação em grupos online” favorece o “Apoio social”, a “Conexão com outras pessoas na mesma situação” e o surgimento do “Senso de comunidade”. Outros achados são discutidos de acordo com as medidas de rede.
Article
Background: Affiliate stigma negatively predicts social support, and positively predicts psychological distress, in caregivers of children with ASD. Whether the affiliate stigma-distress relationship occurs indirectly via social support however has not been explored. Methods: A correlational design was used. A sample of n = 124 caregivers of children with ASD completed an online survey assessing affiliate stigma, perceived support from family, friends and significant others, and perceived stress. Results: The relationship between greater affiliate stigma and increased perceived stress occurred indirectly via lower perceived support from family, but not from friends or significant others. Conclusions: These findings underscore the importance of increasing caregivers' perceived family support. Whether interventions that alleviate affiliate stigma are beneficial for reducing perceived stress, and whether this effect is mediated by increased perceived availability of support, might be the subject of future research.
Article
Background: Evidence has established the association between risk factors and attention-deficit/hyperactivity disorder (ADHD) severity, but less is known about factors that may have protective effects on clinical, academic, and social outcomes among children with ADHD. Objective: To examine associations between family cohesion, caregiver social support, community support, and (1) ADHD severity, (2) school engagement, and (3) difficulty making or keeping friends. Methods: Cross-sectional study of school-aged and adolescent children with ADHD using data from the 2016 National Survey of Children's Health. Our outcomes were (1) parent-rated ADHD severity, (2) school engagement, and (3) difficulty making or keeping friends. Our independent variables were (1) family cohesion, (2) caregiver social support, and (3) community support. We used logistic regression models to examine associations between our independent variables and each of our outcome variables, adjusting for child and parent sociodemographic characteristics. Results: In our sample (N = 4,122, weighted N = 4,734,322), children exposed to family cohesion and community support had lower odds of moderate to severe ADHD [adjusted OR (aOR): 0.73 (0.55-0.97); aOR: 0.73 (0.56-0.95), respectively], higher odds of school engagement [aOR: 1.72, (1.25-2.37); aOR: 1.38, (1.04-1.84), respectively], and lower odds of difficulty making or keeping friends [aOR: 0.64, (0.48-0.85); aOR: 0.52, (0.40-0.67), respectively]. Conclusion: Among children with ADHD, family cohesion and community support show protective effects in clinical, academic, and social outcomes. Systematically identifying family- and community-level strengths may be important components of multimodal treatment strategies in children with ADHD.
Article
Objectives Caregivers of children with autism spectrum disorder self-report more physical health problems than controls. Sleep disturbances are also more prevalent in caregivers, and are positively associated with physical health problems. The negative impact of caring for a child with ASD on physical health therefore, might occur indirectly via poorer sleep. Methods Participants, of which n = 43 were caregivers and n = 17 were controls, completed self-report measures of physical health problems and, to capture objective measures of sleep, wore an actigraphy device. Results Physical health problems were greater in caregivers, as were subjective reports of disturbed sleep. Objectively, waking after sleep onset (WASO) and average number of awakenings were higher, as was sleep latency, and sleep efficiency was poorer, in caregivers. Total sleep time however, was greater in caregivers, as was time in bed. Physical health problems, while unrelated to actigraphy measures, were positively associated with self-reported sleep disturbances. Caregivers’ increased risk for physical health problems occurred indirectly via greater self-reports of disturbed sleep. Conclusions Interventions that help alleviate caregivers’ sleep disturbances might be effective, by reducing physical health problems, for improving quality of provided care, and this might be explored in future research.
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Background: The health professionals are involved in the paths of care for patients with different medical conditions. Their life is frequently characterized by psychopathological outcomes so that it is possible to identify consistent burdens. Besides the possibility to develop pathological outcomes, some protective factors such as resilience play a fundamental role in facilitating the adaptation process and the management of maladaptive patterns. Personal characteristics and specific indexes such as burdens and resilience are essential variables useful to study in-depth ongoing conditions and possible interventions. The study was aimed at highlighting the presence and the relations among factors as personal variables, burdens, and resilience, to understand health professionals' specific structure and functions. Methods: The observation group was composed of 210 participants, 55 males (26.2%), and 155 females (73.8%), aged from 18 to 30 years old with a mean age of 25.92 years old ( SD = 3.33). The study considered personal characteristics of the subjects, such as age, gender, years of study, days of work per week, hours of work per week, and years of work. Our study had been conducted with the use of measures related to burdens (Caregivers Burden Inventory) and resilience (Resilience Scale for Adults). Results: The performed analyses consisted of descriptive statistics, correlations, and regressions among the considered variables. Several significant correlations emerged among personal characteristics, CBI, and RSA variables. Specifically, age and work commitment indexes appeared to be significantly related to the development of burdens, differently from the years of study. Significant correlations emerged among personal and RSA variables, indicating precise directions for both domains. Age and gender were identified as predictors to perform multivariate regression analyses concerning CBI factors. Significant dependence relations emerged with reference to all CBI variables. Conclusion: Pathological outcomes and resilience factors represent two sides of the health professionals' experiences, also known as “invisible patients.” Greater knowledge about present conditions and future possibilities is a well-known need in literature so that the current analyses considered fundamental factors. In line with state of the art, future studies are needed in order to deepen elusive phenomena underlying maladjustment.
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The Family Support Scale (FSS) has been adopted widely in recent years to measure social support among populations with special needs, including those who have Attention deficit hyperactivity disorder (ADHD). Nevertheless, there has been no examination of its psychometric properties with families of these children. In this study, a principal component analysis was run on data of 130 parents of children with ADHD in Vietnam. A structure of four components was identified. The full scale as well as four identified subscales was shown to have good internal consistency reliability and face validity.
Article
The purpose of this integrative review is to synthesize the literature examining the relationship between parenting stress and social support in Hispanic parents of children with autism spectrum disorder (ASD). A database search of studies that evaluated parenting stress and social support in this population was conducted. Fourteen studies met inclusion criteria. Despite high stress levels, both informal and formal social supports improved parenting stress among Hispanic families. Few studies evaluated culturally sensitive social support interventions. With the increasing prevalence of ASD, the development of culturally sensitive social support interventions is necessary to promote the well-being of Hispanic families.
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The Strengths and Difficulties Questionnaire (SDQ) is a brief behavioral screening questionnaire that can be completed in 5 minutes by the parents or teachers of children aged 4 to 16; there is a self-report version for 11- to 16-year-olds. In this study, mothers completed the SDQ and the Child Behavior Checklist (CBCL) on 132 children aged 4 through 7 and drawn from psychiatric and dental clinics. Scores from the SDQ and CBCL were highly correlated and equally able to discriminate psychiatric from dental cases. As judged against a semistructured interview, the SDQ was significantly better than the CBCL at detecting inattention and hyperactivity, and at least as good at detecting internalizing and externalizing problems. Mothers of low-risk children were twice as likely to prefer the SDQ.
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To examine the impact of having a close relative experience a severe brain injury. Six-month longitudinal mixed methods concurrent embedded study. Quantitative data provided the primary database and qualitative data provided the secondary source. Assessment included psychosocial factors of perceived stress, traumatic stress symptoms, coping and social support in addition to salivary cortisol as a biological marker of stress. Written accounts of the experience were provided in response to an open-ended question. Participants composed 15 close relatives of adults with severe brain injury admitted to a specialist rehabilitation facility (mean age 49.4 years; SD 11.79). Assessments were conducted on admission, at 6 weeks, 3 months and 6 months post-admission. Quantitative data revealed high traumatic stress at admission, with a non-significant decline at follow-up. Diurnal cortisol output declined significantly from baseline to all follow-up assessments. Coping sub-scales of acceptance and religion were repeated associated with cortisol indices at baseline, 6 weeks, 3 months and 6 months follow-up. Qualitative data revealed two themes; 'relational impact' and 'passage of time'. Findings offer the potential for effective and timely intervention in family members of persons with severe brain injury.
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This article shows age and gender differences in the magnitude and day-to-day variability of the cortisol awakening response (CAR) using a national sample of 1,143 adults who completed the second wave of the National Study of Daily Experiences, a part of the Midlife Development in the United States survey. Participants between the ages of 33 and 84 years completed 8 consecutive nightly interviews and provided 4 saliva samples (upon waking, 30 min after waking, before lunch, and before bed) on 4 consecutive interview days. Results revealed substantial day-to-day variability in the CAR as well as significant AgexGender interactions, indicating that although no systematic age-related differences emerged for women, the magnitude and day-to-day variability of the CAR increased with age among men.
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This study examined the relationship between maternal mental health problems and both caregiving time and experience of time pressure for 216 mothers of children with autism. Data describing caregiving time was obtained using 24-h time-diaries. Standard questionnaires were used to assess time pressure, social support, children's emotional and behavioural problems, and maternal mental health problems. After adjusting for the effect of children's age, maternal social support, and children's behaviour problems, time pressure but not hours of caregiving, had a significant positive relationship with maternal mental health problems. Findings suggest that the quality of home-based care for children with autism may be adversely affected if time pressure experienced by caregivers compromises their mental health and well being.
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Using daily diary methods, mothers of adolescents and adults with ASD (n = 86) were contrasted with a nationally representative comparison group of mothers of similarly-aged unaffected children (n = 171) with respect to the diurnal rhythm of cortisol. Mothers of adolescents and adults with ASD were found to have significantly lower levels of cortisol throughout the day. Within the ASD sample, the son or daughter's history of behavior problems interacted with daily behavior problems to predict the morning rise of the mother's cortisol. A history of elevated behavior problems moderated the effect of behavior problems the day before on maternal cortisol level. Implications for interventions for both the mother and the individual with ASD are suggested.
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Using daily telephone interviews, 82 midlife parents (mean age = 57.4) of children with disabilities (mean age = 29.9) were compared with a closely matched sample of unaffected parents (N = 82) to elucidate the daily experience of nonnormative parenting. In addition, salivary cortisol samples were obtained to examine whether parents of children with disabilities had dysregulated diurnal rhythms and the extent to which the amount of time spent with children was associated with divergent patterns of cortisol expression. We found that parents of children with disabilities had similar patterns of daily time use and similar likelihood of positive daily events as the comparison group, but they had elevated levels of stress, negative affect, and physical symptoms, all reported on a daily basis. In addition, their diurnal rhythm of cortisol expression differed significantly from the comparison group, a pattern that was strongest for parents of children with disabilities on days when they spent more time with their children.
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The purpose of this article is to determine whether the positive association between social support and well-being is attributable more to an overall beneficial effect of support (main- or direct-effect model) or to a process of support protecting persons from potentially adverse effects of stressful events (buffering model). The review of studies is organized according to (a) whether a measure assesses support structure or function, and (b) the degree of specificity (vs. globality) of the scale. By structure we mean simply the existence of relationships, and by function we mean the extent to which one’s interpersonal relationships provide particular resources. Special attention is paid to methodological characteristics that are requisite for a fair comparison of the models. The review concludes that there is evidence consistent with both models. Evidence for a buffering model is found when the social support measure assesses the perceived availability of interpersonal resources that are responsive to the needs elicited by stressful events. Evidence for a main effect model is found when the support measure assesses a person’s degree of integration in a large social network. Both conceptualizations of social support are correct in some respects, but each represents a different process through which social support may affect well-being. Implications of these conclusions for theories of social support processes and for the design of preventive interventions are discussed.
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The objective of the study was to test predictive models of schizophrenia caregiver burden and infectious illness episodes for caregivers who had regular contact with their mentally ill family members. A nurse interviewer, blind to the patient's symptoms, caregiver burden, and psychosocial status, administered the Health Review to 70 caregivers. A second family interviewer, blind to caregiver health status and patient symptoms, assessed caregiver resources (eg, active coping and social support), vulnerabilities (eg, anger expression and passive coping) and burden. Concurrently, independent patient raters, blind to caregiver health and psychosocial status, assessed caregiver stressors. The Brief Psychiatric Rating Scale and the Modified Scale for the Assessment of Negative Symptoms were used to assess the severity of positive (eg, hallucinations and delusions) and negative (eg, anhedonia and asociality) symptoms, respectively. Predictive models, including measures of stressors, resources, and vulnerability factors for caregiver burden and for presence of infectious illness, were each highly significant, accounting for 40% and 29% of the variance, respectively. However, the specific measures that predicted burden and infectious illness differed. Greater burden was predicted by more severe patient negative symptoms (stressor), greater anger control and blame self-coping (vulnerability), and decreased tangible social support (resource). Presence of infectious illness episodes was predicted by more severe patient positive symptoms (stressor) and less satisfaction with social support while controlling for the frequency of reporting on the Health Review. When scores from the Brief Psychiatric Rating Scale (stressors) were categorized into quartiles, it was found that the frequency of infectious illness in the highest quartile was four times that in the lowest quartile. Other results indicated that even though burden was not associated with infectious illness, it was associated with "continuing health problems," perceived stress, and depression. These data indicate that although schizophrenia caregiver burden and infectious illness are predicted by measures of patient stressors, vulnerabilities, and resources, the specific measures predicting these outcomes differ. The results also call attention to the powerful influence of patient symptoms as a predictor of burden and the presence of infectious illness among caregivers.
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Since the work of Hans Selye, stress has been associated with increased activity of the limbic-hypothalamic-pituitary-adrenocortical (LHPA) axis. Recently, a number of studies in adults have shown that this neuroendocrine axis may be hyporesponsive in a number of stress-related states. Termed hypocortisolism, the paradoxical suppression of the LHPA axis under conditions of trauma and prolonged stress presently challenges basic concepts in stress research. Adverse conditions that produce elevated cortisol levels early in life are hypothesized to contribute to the development of hypocortisolism in adulthood. However, as reviewed in this paper, hypocortisolism also may be a common phenomenon early in human childhood. Although preliminary at this point, the ubiquity of these findings is striking. We argue that developmental studies are needed that help explicate the origins of low cortisol and to determine whether the development of hypocortisolism is, in fact, preceded by periods of frequent or chronic activation of the LHPA axis. We also argue that developmental researchers who incorporate measures of salivary cortisol into their studies of at-risk populations need to be aware of the hypocortisolism phenomenon. Lower than expected cortisol values should not necessarily be relegated to the file drawer because they contradict the central dogma that stress must be associated with elevations in cortisol. Lastly, we note that evidence of low cortisol under adverse early life conditions in humans adds to the importance of understanding the implications of hypocortisolism for health and development.
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This study examined whether chronic stress impairs the immune system's capacity to respond to hormonal signals that terminate inflammation. Fifty healthy adults were studied; half were parents of cancer patients, and half were parents of healthy children. Parents of cancer patients reported more psychological distress than parents of healthy children. They also had flatter diurnal slopes of cortisol secretion, primarily because of reduced output during the morning hours. There was also evidence that chronic stress impaired the immune system's response to anti-inflammatory signals: The capacity of a synthetic glucocorticoid hormone to suppress in vitro production of the pro-inflammatory cytokine interleukin-6 was diminished among parents of cancer patients. Findings suggest a novel pathway by which chronic stress might alter the course of inflammatory disease.
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Ambulatory saliva collections for subsequent analysis of free cortisol levels are now frequently applied to measure adrenocortical activity in healthy subjects and patient populations. Despite the prime importance of accurate timing of saliva collection outside the laboratory, no data are available on the compliance of study participants following a given sampling protocol. This study investigated how accurately subjects adhered to the instructions to collect six saliva samples throughout 1 day. Subjects were instructed to collect six saliva samples throughout 1 day (directly after awakening, 30 minutes after awakening, 11 AM, 3 PM, 8 PM, 10 PM). Objective compliance was measured using an electronic monitoring device given to the subjects either with ("informed" N = 23) or without ("noninformed" N = 24) their knowledge of the nature of the device. Data on subjective compliance were obtained by self-report. Thirty-one subjects (74%) were found to comply with the sampling instructions, and 11 (26%) failed at least once to obtain the saliva sample at the correct time of day. Nine of the 11 noncompliant subjects (82%) had two or more noncompliant samples. Fifty-five percent (6 of 11) of the noncompliant subjects took sample 2 outside the sampling window. The circadian cortisol profile differed significantly between compliant and noncompliant subjects (F = 7.98, p =.007). The most important effect of compliance was seen in the rise of cortisol at awakening. Compliant subjects showed a robust increase, whereas noncompliant individuals had only minimal changes from baseline at 30 minutes after awakening (t = 2.89, p =.007). Thus the steepness of the circadian cortisol decline was greater for compliant subjects (t = 2.10, p =.043). Furthermore, the informed group adhered more closely to the sampling protocol than the noninformed subjects (p =.001). Self-reported compliance also differed significantly between study groups (p =.03). In the noninformed group, self-reported sampling accuracy was significantly higher than objectively measured compliance (p =.03); the two measures were similar in the informed group (p = NS). A significant number of subjects did not obtain saliva samples reliably in an ambulatory setting. This can partially invalidate the cortisol results and mask potential differences between subject groups of interest. We therefore recommend the use of electronic monitoring devices or other suitable methods and that study participants be informed about the device when ambulatory saliva collection is performed.
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The findings described in this report and summarized here focus on the prevalence of mental disorders among 5-15 year olds and on the associations between the presence of a mental disorder and biographic, sociodemographic, socio-economic, and social functioning characteristics of the child and the family. Causal relationships should not be assumed for any of the results presented in this report.
Chapter
Attempting to understand the body’s signals is similar to trying to interpret the noises and sensations of the automobile that we drive. We do not have a computer printout of either the current physiological status of our body or the condition of the various systems of our car. Given this, we are in the position of attempting to understand a large array of ambiguous sensations about which we have at best a modicum of knowledge. Whether we are dealing with human bodies or inanimate cars, the awareness and reporting of symptoms are dependent on psychological or perceptual processes. Throughout this book, a large number of studies have outlined some of the parameters that determine when and why symptoms are reported. Before discussing some of the implications of symptom research, we present the following brief review of our current knowledge about the perception of physical symptoms.
Book
Physical symptoms are fascinating phenomena to examine. We all experience them, use them as signals to guide our behavior, and usually assume that they accurately represent underlying physiological activity. At the same time, we implicitly know that bodily sensations are often vague, ambiguous, and subject to a variety of interpretations. It is not surprising, then, that there is often a disparity between what we think is going on in our bodies and what is objectively occurring. In short, phenomena such as physical symptoms are the stuff of psychology. My own research into physical symptoms started by accident several years ago. In a hastily devised experiment dealing with the effects of noise on behavior, I had to write a post-experimental questionnaire that would be long enough to allow the experimenter time to calibrate some equipment for a later portion of the study. I included some physical symptoms on the questionnaire as fillers. The experiment was a total failure, with the exception of the symptom reports. People's perceptions of symptoms were easily influenced by our manipulations, even though their actual physiological state had not changed. And so began the present inquiry. Despite the pervasiveness, importance, and sheer amount of time and money devoted to discussing and curing common physical symptoms and sensations, very little empirical work has been devoted to examining the psychological and perceptual factors related to sensory experience. Occa sional papers have tested a specific theory, such as cognitive dissonance, wherein physical symptoms served as an interesting dependent measure."
Article
The purpose of the present study was to explore the associations among benefit finding, daily positive and negative emotion, and daily cortisol slope in 71 maternal caregivers. Benefit finding was measured using the Posttraumatic Growth Inventory (PTGI; Tedeschi, R. G., & Calhoun, L. G. (199656. Tedeschi , RG and Calhoun , LG . 1996. The Posttraumatic Growth Inventory: Measuring the positive legacy of trauma. Journal of Traumatic Stress, 9: 455–472. [CrossRef], [PubMed], [Web of Science ®], [CSA]View all references). The Posttraumatic Growth Inventory: Measuring the positive legacy of trauma. Journal of Traumatic Stress, 9, 455–472.). Cortisol slope was not significantly correlated with any of the PTGI subscales, positive emotion, or negative emotion. However, the interactions of daily positive emotion with the PTGI subscales of Personal Strength, Appreciation of Life, and Spiritual Change were statistically significant such that higher scores on these subscales predicted a steeper (more adaptive) daily cortisol slope only for those women who also had higher levels of daily positive emotion.
Quality of Life (QoL) is a critical measure of treatment outcome for people with mental and physical health concerns. However, little research has been conducted toward evaluating outcomes in autism by utilizing real-world measures, such as employability, self-sufficiency, and social support to gauge treatment success, despite longitudinal research that indicates poor outcomes for people with autism. Utilizing QoL indicators as the standard for developing treatments and evaluating outcomes in autism is advantageous. After a brief description of the domains and indicators comprising QoL, this paper reviews the literature describing the course of autism, followed by an examination of indicators which contribute to QoL for people with autism in particular. In conclusion, a model for utilizing QoL indicators to measure and evaluate outcome for people with autism will be proposed.
Article
ABSTRACT– A self-assessment scale has been developed and found to be a reliable instrument for detecting states of depression and anxiety in the setting of an hospital medical outpatient clinic. The anxiety and depressive subscales are also valid measures of severity of the emotional disorder. It is suggested that the introduction of the scales into general hospital practice would facilitate the large task of detection and management of emotional disorder in patients under investigation and treatment in medical and surgical departments.
Article
A perceived availability of social support measure (the ISEL) was designed with independent subscales measuring four separate support functions. In a sample of college students, both perceived availability of social support and number of positive events moderated the relationship between negative life stress and depressive and physical symptomatology. In the case of depressive symptoms, the data fit a “buffering” hypothesis pattern, i.e., they suggest that both social support and positive events protect one from the pathogenic effects of high levels of life stress but are relatively unimportant for those with low levels of stress. In the case of physical symptoms, the data only partially support the buffering hypothesis. Particularly, the data suggest that both social support and positive events protect one from the pathogenic effects of high levels of stress but harm those (i.e., are associated with increased symptomatology) with low levels of stress. Further analyses suggest that self-esteem and appraisal support were primarily responsible for the reported interactions between negative life stress and social support. In contrast, frequency of past social support was not an effective life stress buffer in either the case of depressive or physical symptomatology. Moreover, past support frequency was positively related to physical symptoms and unrelated to depressive symptoms, while perceived availability of support was negatively related to depressive symptoms and unrelated to physical symptoms.
Article
This study investigated individual differences in the diurnal cycle of cortisol and explored their relation to several psychosocial variables and to upper-respiratory symptoms. Cortisol and daily experience were assessed for 2 days in 109 healthy employed and unemployed community residents (mean age = 36.4 ± 12.1, 69% female); self-report upper respiratory illness (URI) symptoms were assessed for an additional 10 days. Fifty-six (51%) participants showed typical declines in cortisol during both days, 19 (17%) showed no significant diurnal pattern on both days, and 34 (31%) showed different diurnal patterns on the 2 days. Individuals with no cycles did not differ from those with normal or inconsistent cycles on demographic factors, baseline psychological measures, health behaviors, or daily experiences over the two assessment days. Individuals without cortisol cycles, however, reported fewer URI symptoms than the remaining subjects. That 17% of our sample did not exhibit diurnal cycles of cortisol was surprising, given established views of normal endocrine function. Although average daily level of cortisol is related to a number of psychosocial and psychiatric factors (e.g. stress and depression), pattern of diurnal cycle was not related to any demographic or psychosocial measures in this study. The finding that flat cycles were related to fewer reports of URI symptoms suggests that perturbations in cycle may be related to processes associated with symptom susceptibility or symptom expression.
Article
Cortisol awakening responses (CAR) are often blunted or even extinguished when saliva samplings are delayed. The literature suggests that delays of 10 or 15 min are tolerable. Delays of 15 min were analysed with 510 CARs with the first sample taken within 3 min post-awakening followed by 4 samples taken 15, 30, 45, and 60 min later. Varying delays of up to 30 min were analysed with these and further 148 CARs where sampling began within 30 min post-awakening. Times of awakening and of saliva collection were verified by polysomnography or actimetry and by electronic devices respectively. Simulated sampling delays of 15 min revealed highly significant deviations from correctly taken CARs. No deviations were found for delays of up to 11.5 min suggesting that delays of up to 10 min are acceptable but that delays between 10 and 15 min might become critical.
Article
Research has frequently linked perceived stress with changes in subjective and objective measures of ill health; however, additional assessment should consider the physiological mechanisms mediating these effects. This study investigated whether differential patterns of cortisol secretion might partially mediate perceived stress related disparities in common health complaints in young, otherwise healthy individuals. To capture the kinds of health complaints commonly reported in this population, the Pennebaker Inventory of Limbic Languidness (PILL) was selected. To capture important parameters of the diurnal profile, cortisol was sampled at waking, 30 minutes post waking, 1200 h and 2200 h on three consecutive weekdays. Results revealed flatter diurnal cortisol slopes and elevated mean diurnal output (characterised by HPA hyperactivity in the evening) for participants in the higher stress group. Participants that reported higher perceived levels of stress also reported experiencing common health complaints with markedly greater frequency; however, these disparities were abolished when mean diurnal output of cortisol was statistically controlled. While dysregulation of basal HPA activity has been implicated in the aetiologies of chronic illness, findings reported here implicated hypersecretion of cortisol as one physiological pathway, partially mediating perceived stress related disparities in the kinds of common health complaints that typically affect young, otherwise healthy individuals.
Article
This study concerned the possible influence of experimental shift work, morningness and sleep length on the cortisol awakening response (CAR). Eight morning-oriented (MT) and eight evening-oriented (ET) healthy young men (19-27 years) slept after three consecutive day shifts during the night and after three consecutive night shifts during the day in the laboratory. Salivary cortisol concentrations were ascertained after each sleep period upon awakening and half an hour later, half-hourly during work shifts, and hourly during two 24-h periods, after the three day shift/night sleep sequences and after the three night shift/day sleep sequences. Statistical analyses considered the temporal position of sleep (night, day), the succession of sleep periods, the diurnal type and the polysomnographically verified total sleep time. The CAR was significantly smaller after day than after night sleep and increased significantly with total sleep time in ET. MT had moderately higher cortisol concentrations upon awakening than ET probably because they wake up at a later time of their circadian rhythm. But neither the CARs nor the cortisol concentrations during the following work shifts or during the 24h profiles were different in both diurnal types. The cortisol concentrations during work shifts correlated significantly with the previous post-awakening concentrations in MT but not in ET. Due to the small samples further studies are needed.
Article
This review will provide an overview of literature that has linked caregiver stress with development and progression of disease, via interactions between the hypothalamic-pituitary-adrenal (HPA) axis and immune systems. The link between caregiver stress and dysregulation of key physiologic mediators has, in the main, focussed on elderly caregivers of spouses with degenerative illness, i.e., dementia. In these populations, aberrations of both endocrinological and immunologic mediators have been demonstrated. However, as a function of their advancing age, elderly populations experience natural dysregulation of the HPA axis and decline of immunologic efficacy. More recently, research has begun to assess whether caregiver stress exacts a similar physiologic toll on non elderly caregivers, i.e., parents of medically fragile children. Dysregulation of endocrinological and immunologic mediators have been observed in both populations, however, more consistently so in the elderly. The authors suggest that, by considering specific characteristics of the care recipient, i.e., type of impairment, and concomitant changes in the caregiving experience, i.e., caregiving intensity, as well as the role of dyadic support, researchers might be better poised to explain discrepant physiologic findings between elderly and non elderly caregivers and reconcile similar physiologic inconsistencies between different, non elderly populations.
Article
This study evaluated level of salivary cortisol and perceived burden, stress and health of mothers and primary caregivers of children (4-11 years of age) with cerebral palsy (purpose group, n=37) and those for mothers of children of the same age without developmental problems (control group, n=38). Anthropometric and socioeconomic data were collected from the participants, who also completed the perceived stress questionnaire, the Burden Interview and the 36-Item Short Form Health Survey (SF-36). Cortisol level was assayed in saliva samples collected at various times in a single day and the area under the cortisol curve was then determined. Both groups presented low socioeconomic level and high, although equivalent, perceived stress index. However, the purpose group showed lower cortisol levels, as well as lower scores for many of the SF-36 domains related to physical well-being (physical functioning, role-physical, vitality, and general health) and social functioning. Nevertheless, bodily pain was also reported to be lower. For the control group, the area under the cortisol curve correlated negatively with mental health and social functioning. For the purpose group, where the burden is greater, no such correlation was found. It was concluded that mothers of healthy children leaving in unfavorable socioeconomic conditions face high levels of stress with the hypothalamus-pituitary-adrenal cortex axis function preserved. However, to the mothers of children with cerebral palsy, who live in even worse socioeconomic conditions and also have the burden of caring for a disabled child, the level of stress was overwhelming, to an extent that it impaired the hypothalamus-pituitary-adrenal cortex axis function, as well as reflecting negatively on certain aspects of their physical and psychological well-being. This must receive consideration during the treatment of the child, an approach which is in line with present day tendencies towards family-centered models of assistance to disabled children.
Article
Higher daytime cortisol output has been associated with higher levels of perceived stress and worse mental and physical health outcomes. Hypothalamic-pituitary-adrenal (HPA) axis dysregulation, such as elevated secretion of daytime cortisol, occurs in many mental and physical illnesses. However, the nature of the association between functional health status and daytime cortisol production has not been established. Healthy adult volunteers (n=68, 45 females) provided saliva samples 3, 6, 9 and 12 h after waking, for two consecutive days, in everyday settings. Bivariate correlations between log salivary cortisol concentrations were calculated, and the SF-36 component summary scores were calculated. Latent growth curve modeling was used to model the daytime profile and adjust for covariates (age, sex and waking time). Higher PCS scores were not associated with cortisol three hours after waking (cortisol intercept), or the diurnal decline (cortisol slope). Higher MCS scores were correlated with faster cortisol decline across the day (r=-.31, P<.01) but not with cortisol intercepts. In a latent growth curve model adjusting for age, sex and waking time, the association was no longer statistically significant. Large scale epidemiological studies involving salivary cortisol would benefit from measuring SF-36 component summary scores. Cortisol intercepts and slopes may be differentially related to the PCS and MCS, although greater statistical power is needed to test this hypothesis more fully. Associations between daytime cortisol and the PCS or MCS could reflect the regulatory competence of bodily systems, common causes or unmeasured confounding factors.
Article
While a 'Family-Centered' approach to care is accepted as best practice in the context of childhood disability, it may lead to increased demands on family members by requiring them to be active participants in their child's care. This may impact upon the physical and mental health of the caregiver and therefore needs to be investigated. This study aimed to assess the health status of caregivers of children with cerebral palsy (CP) in Ireland and to identify vulnerable subgroups. A cross-sectional postal survey was conducted using a questionnaire incorporating the SF-36v2.0. The sample consisted of male and female caregivers of children with CP, representing all levels of ability. Two questionnaires were sent to each child's home; a total of 312 questionnaires were sent to the homes of 156 children. Completed questionnaires were returned by 161 caregivers (100 women, 61 men) of 101 children, giving a response rate of 65%. Caregivers of children with CP were found to have poorer health than the Irish general population, for whom normative data exist. Female caregivers had poorer health than male caregivers in both the physical (P < 0.05) and mental health (P < 0.001) domains of the SF-36. Caregivers spending more time caring had significantly poorer mental health than those spending less time caring (P < 0.05). There was no difference in the health of caregivers of 'more independent' versus 'more dependent' children, apart from the latter group reporting higher levels of bodily pain (P < 0.05). This study provides evidence of the inferior health status of caregivers of children with CP in Ireland, particularly that of women.
Article
The present study examined the effects of illness representation, perceived quality of information provided by the health-care professional, and perceived social support on the depressive symptoms of the caregivers of children with leukemia. The sample was composed of 71 caregivers of children with leukemia living in Turkey. The obtained data were analyzed by path analysis. The results show that caregivers of children with leukemia experience higher levels of depressive symptoms when they have negative illness representation and lower levels of depressive symptoms when they perceive higher levels of social support. Moreover, they perceive higher social support when they perceive high quality of information provided by health-care professionals. It can be suggested that intervention programs which aim to increase caregivers' social support and change their illness representation in a positive way would be helpful for the caregivers showing depressive symptoms.
Article
The cortisol awakening response (CAR) is a burst of cortisol in response to awakening from sleep that is superimposed on the circadian rhythm of cortisol. Determination of the CAR is contingent on the timing of sample collection: a delay between waking and collection of the first sample may affect the rise of the CAR, and could explain equivocal findings reported in the literature. We evaluated the impact of a delay between wake time and collection of waking cortisol samples on the CAR. Two methods were used to identify wake time: polysomnography (PSG) and self-report (S-R). Participants (total n=207, mean age 74.0+/-7.2 years) included bereaved older adults (n=35), caregivers (n=50), patients with insomnia and co-morbid medical disorders (n=68), and the healthy older adults (n=54). We used ANOVA to test if a delay >15 min affected the CAR. We also fitted cubic spline models to assess expected cortisol levels, the expected CAR, and the expected decrease in CAR. Wake times measured by PSG and S-R did not differ significantly. Large delays were observed (for both PSG and S-R) between wake time and collection of the waking cortisol sample (24.8+/-32.2 min for PSG and 28.3+/-49.2 min for S-R). Both statistical methods indicated that a delay >15 min between wake time and first cortisol sample collection significantly affected the CAR (p's<.005); later collection times were associated with smaller CAR values. Later collection times and reduced CAR values may affect the interpretation of clinical associations. Our data also show that S-R assessments of wake time perform equally well to PSG for evaluating adherence with CAR sampling procedures.
Article
The present study based on World Health Organization quality of life (WHOQOL-BREF) scale to examine quality of life of the caregivers caring for their children/adolescents with intellectual disabilities in Taiwan, and the factors contributing to their quality of life. Structured interviews were conducted with 597 caregivers of children/adolescents with intellectual disabilities. The results found that the mean scores in each domain of WHOQOL-BREF of the caregivers as the followings: physical capacity (PC) was 13.71+/-2.35, psychological well-being (PW) was 12.21+/-2.55, social relationship (SR) was 12.99+/-2.43 and environment (EN) was 12.32+/-2.38. These mean scores were lower than the general population and slight higher than the caregivers of adults with intellectual disabilities in Taiwan. Finally, multiple stepwise regressions were conducted to examine the characteristics of caregiver and children/adolescents with intellectual disabilities will more likely explained the WHOQOL-BREF mean scores. The study found the following three factors: self-perceived health status, household income and stress from insufficient family support were significantly correlated to all four domains in multiple stepwise regression analyses. The results highlights that caregivers of children and adolescents with intellectual disabilities seem to display a lower WHOQOL-BREF mean score than the general population, probably for a combination of stress, health and household income factors. These finding must be taken into account in policy making to provide better and more specific supports and interventions for the caregivers of people with intellectual disabilities.
Article
The cortisol awakening rise (CAR) is defined as cortisol secretory activity in the first 45-60 min immediately post-awakening. It has been suggested that psychological factors may disrupt the normal awakening rise. Recent research has shown that psychological stress may influence the magnitude of the CAR, however the findings have been mixed. This study examined the impact of stress on the CAR and the diurnal mean in a sample of middle-aged women. One hundred and eighteen healthy female participants who reported experiencing high or low stress were recruited. Salivary cortisol levels were measured immediately upon awakening (at 0, 15, 30, and 45 min) and at 3, 6, 9 and 12 h on two consecutive days. A number of metabolic and inflammatory biomarkers were also assessed together with measures of mood disturbance and health behaviour. The magnitude of the CAR, assessed by the area under the response curve (AURC) estimate, was significantly lower in the high stress group compared to the low stress group indicating that participants who experienced high stress secreted lower levels of cortisol. The effect was largely accounted for by differences 30 min after waking. The diurnal mean was also lower for the high stress group. Although participants in the high stress group had a slightly worse inflammatory profile, only low-density lipoprotein levels were found to be significantly higher, compared to the low stress group. Lifestyle indicators and mood were also found to be significantly poorer in the high stress group. The results suggest that psychological stress may be associated with a smaller cortisol awakening rise, a lower diurnal mean, poor lifestyle choices and high levels of psychological distress. These findings may have broader implications for future health risk and for an individual's ability to cope with imminent daily stressors and demands.
Article
Caring for a family member with cancer is a psychologically demanding experience. However, it remains unclear whether the distress that caregiving provokes also takes a physiologic toll on the body. This study observed familial caregivers of patients with brain cancer for a year after diagnosis and tracked changes in neurohormonal and inflammatory processes. Eighteen caregivers (age 50.4 +/- 3.5 years) and 19 controls (age 50.2 +/- 2.6 years) were assessed four times during a year (before and after radiotherapy, as well as 6 weeks and 4 months thereafter). Salivary biomarkers of hypothalamus-pituitary-adrenal axis and sympathetic nervous system (SNS) activity were collected, and blood was drawn for assessment of the systemic inflammatory markers C-reactive protein (CRP) and interleukin-6 (IL-6). Blood was also used to monitor in vitro IL-6 production by endotoxin-stimulated leukocytes and expression of mRNA for pro- and anti-inflammatory signaling molecules. Caregivers showed marked changes over time in diurnal output of salivary amylase, a marker of SNS activity, whereas secretions in controls were stable during follow-up. Cortisol output was similar in caregivers and controls. During the year, caregivers showed a profound linear increase in systemic inflammation, as indexed by CRP. At the same time, they displayed a linear decline in mRNA for anti-inflammatory signaling molecules and diminished in vitro glucocorticoid sensitivity. These preliminary data show that familial caregivers of patients with cancer experience marked changes in neurohormonal and inflammatory processes in the year after diagnosis. These changes may place them at risk for morbidity and mortality from diseases fostered by excessive inflammation.
Article
The etiopathogenesis of chronic fatigue syndrome (CFS) remains poorly understood. Although neuroendocrine disturbances - and hypothalamic-pituitary-adrenal (HPA) axis hypofunction in particular - have been found in a large proportion of CFS patients, it is not clear whether these disturbances are cause or consequence of the illness. After a review of the available evidence we hypothesize that that HPA axis hypofunction in CFS, conceptualized within a system-biological perspective, primarily reflects a fundamental and persistent dysregulation of the neurobiological stress system. As a result, a disturbed balance between glucocorticoid and inflammatory signaling pathways may give rise to a pathological cytokine-induced sickness response that may be the final common pathway underlying central CFS symptoms, i.e. effort/stress intolerance and pain hypersensitivity. This comprehensive hypothesis on HPA axis hypofunction in CFS may stimulate diagnostic refinement of the illness, inform treatment approaches and suggest directions for future research, particularly focusing on the neuroendocrine-immune interface and possible links between CFS, early and recent life stress, and depression.