Cognitive abilities of patients with Lesch-Nyhan disease
Male; Child; Humans; Adult; Adolescent; Female; Child Preschool; Social Environment; Combined Modality Therapy; Social Adjustment; Social Behavior; Behavior Therapy; Awareness; Intelligence; Neuropsychological Tests; Achievement; Lesch-Nyhan Syndrome/di [Diagnosis]; Intellectual Disability/di [Diagnosis]; Intellectual Disability/px [Psychology]; Intellectual Disability/th [Therapy]; Language Development Disorders/di [Diagnosis]; Language Development Disorders/px [Psychology]; Language Development Disorders/th [Therapy]; Lesch-Nyhan Syndrome/px [Psychology]; Lesch-Nyhan Syndrome/th [Therapy]; Self-Injurious Behavior/di [Diagnosis]; Self-Injurious Behavior/px [Psychology]; Self-Injurious Behavior/th [Therapy]; Thinking; alertness; behavioral; Lesch-Nyhan syndrome; trajectory; characteristics; attempted suicide; suicide
Parents of 42 patients with Lesch-Nyhan disease completed a questionnaire systematizing caregiver observations of the subject's behavior during a wide variety of daily events. Responses were grouped in nine categories reflecting different aspects of cognitive skills. Only 1 boy appears to have any significant generalized cognitive impairment. The patients' memory for both recent and past events is excellent, their emotional life has a normal range of reactions and is appropriate; they have good concentration, are capable of abstract reasoning, have good self-awareness, and are highly social. However, they are behind in academic ability, with only 15% at grade level for math and reading. Implications for designing educational activities, parenting or caregiver strategies, and research methodology are discussed.
Anderson L T; Ernst M; Davis S V
Journal of Autism and Developmental Disorders
1992
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1007/bf01058150" target="_blank" rel="noreferrer noopener">10.1007/bf01058150</a>
Children's experiences of cystic fibrosis: a systematic review of qualitative studies
adolescent; Child; Humans; Young Adult; Prognosis; Health Services Needs and Demand; social support; Qualitative Research; Social Isolation; Sick Role; Social Adjustment; Cystic Fibrosis; Activities of Daily Living; Self Care; Cost of Illness; Internal-External Control; Defense Mechanisms; Disability Evaluation; Hope; Power (Psychology); quality of life; Preschool; Adaptation; Psychological; Resilience
BACKGROUND AND OBJECTIVE: Cystic fibrosis (CF) is a common life-shortening genetic disease and is associated with poor psychosocial and quality of life outcomes. The objective of this study was to describe the experiences and perspectives of children and adolescents with CF to direct care toward areas that patients regard as important. METHODS: MEDLINE, Embase, PsycINFO, and Cumulative Index to Nursing and Allied Health Literature were searched from inception to April 2013. We used thematic synthesis to analyze the findings. RESULTS: Forty-three articles involving 729 participants aged from 4 to 21 years across 10 countries were included. We identified 6 themes: gaining resilience (accelerated maturity and taking responsibility, acceptance of prognosis, regaining control, redefining normality, social support), lifestyle restriction (limited independence, social isolation, falling behind, physical incapacity), resentment of chronic treatment (disempowerment in health management, unrelenting and exhausting therapy, inescapable illness), temporal limitations (taking risks, setting achievable goals, valuing time), emotional vulnerability (being a burden, heightened self-consciousness, financial strain, losing ground, overwhelmed by transition), and transplant expectations and uncertainty (confirmation of disease severity, consequential timeliness, hope and optimism). CONCLUSIONS: Adolescents and children with CF report a sense of vulnerability, loss of independence and opportunities, isolation, and disempowerment. This reinforces the importance of the current model of multidisciplinary patient-centered care that promotes shared decision-making, control and self-efficacy in treatment management, educational and vocational opportunities, and physical and social functioning, which can lead to optimal treatment, health, and quality of life outcomes.
2014-06
Jamieson N; Fitzgerald D; Singh-Grewal D; Hanson CS; Craig JC; Tong A
Pediatrics
2014
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Journal Article
<a href="http://doi.org/10.1542/peds.2014-0009" target="_blank" rel="noreferrer">10.1542/peds.2014-0009</a>
Behavioral, social, and educational outcomes after pediatric stem cell transplantation and related factors
adolescent; Child; Female; Humans; Male; mothers; Neoplasms; Adult; Parent-Child Relations; Treatment Outcome; Longitudinal Studies; Social Adjustment; Behavior; Mental Health; Depression; Internal-External Control; Survivors; Teaching; Adaptation; Psychological; Cranial Irradiation; Social Behavior; Stem Cell Transplantation
BACKGROUND: The purpose of the current study was to investigate longitudinally children's behavioral and social competence outcomes up to 2 years after pediatric stem cell transplantation (SCT) and related factors. METHODS: Ninety-nine mothers and 24 youths completed standardized questionnaires (Child Behavior Checklist [CBCL] and Youth Self-Report [YSR]) pre-SCT, and 12 and 24 months after SCT; 26 teachers completed Teacher Report Form (TRF) at 24 months. Information regarding clinical (eg, diagnosis, cranial radiation, graft vs host disease [GVHD]), child (eg, age, sex, physical health), and familial (eg, maternal age, education, distress) factors was also obtained. RESULTS: Linear mixed regression models with compound covariance structure followed by adjusted pairwise analyses yielded significant improvements from pre-SCT to 1 and 2 years after SCT in total scores; in externalizing and internalizing scores from pre-SCT to 2 years after SCT; and in total competence from pre-SCT to 1 year after SCT. Child's physical health, maternal age, and depression were found to be significantly associated with the total, internalizing, and externalizing CBCL scores, whereas GVHD, mother's age, and time since diagnosis were associated with CBCL competence scores. Diagnosis, cranial radiation, GVHD, child's physical health, and maternal age and education were associated with YSR total behavioral and competence scores. Finally, total TRF scores were associated with time since diagnosis; TRF educational and adaptability scores were associated with maternal education, age, and distress. CONCLUSIONS: Clinical, personal, and familial factors must be considered to understand the psychosocial outcomes of these survivors up to 2 years after SCT. This study has important implications for psychosocial interventions for this population.
2009-02
Barrera M; Atenafu E; Pinto J
Cancer
2009
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Journal Article
<a href="http://doi.org/10.1002/cncr.24109" target="_blank" rel="noreferrer">10.1002/cncr.24109</a>
Brief report: psychosocial functioning of fathers as primary caregivers of pediatric oncology patients
Child; Humans; Male; Adult; Questionnaires; Social Adjustment; Psychology; Stress; Social Behavior; Psychological/diagnosis/epidemiology/psychology; Caregivers/statistics & numerical data; Disabled Children/statistics & numerical data; father experience; Fathers/psychology/statistics & numerical data; Neoplasms/epidemiology
OBJECTIVE: To evaluate the psychosocial functioning of fathers as primary caregivers of pediatric oncology patients. METHODS: Fathers who identified themselves as the primary medical caregivers were given a packet of questionnaires, including the Brief Symptom Inventory (BSI), the Impact of Event Scale (IES), the Impact on Family Scale (IFS), the Caregiver Strain Questionnaire (CGSQ), and the Parent Experience of Child Illness (PECI) scale, to complete and return by mail. The 23 fathers who returned the questionnaire packets were compared with 23 mothers who were matched on demographic variables. RESULTS: There were no differences between groups on self-report measures of distress or illness-related parenting stress. Descriptively, however, the majority of parents were above normative means on measures of psychological distress with a significantly greater proportion of fathers endorsing elevated levels of depression on the BSI. CONCLUSION: Including fathers in pediatric psychosocial research is important and represents a growing trend in psycho-oncology.
2007
Bonner MJ; Hardy KK; Willard VW; Hutchinson KC
Journal of Pediatric Psychology
2007
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Journal Article
<a href="http://doi.org/10.1093/jpepsy/jsm011" target="_blank" rel="noreferrer">10.1093/jpepsy/jsm011</a>
Posttraumatic growth in former Vietnam prisoners of war
Humans; Male; Aged; social support; Age Factors; Social Adjustment; Regression Analysis; Psychological Tests; Psychiatric Status Rating Scales; Stress Disorders; Post-Traumatic; Prisoners; Vietnam Conflict
This study examined posttraumatic growth in 30 male veterans captured and held as prisoners of war during the Vietnam War. Participants were assessed with structured diagnostic interviews administered by trained clinicians as well as with the Posttraumatic Growth Inventory (PTGI) and other questionnaires measuring dispositional optimism, religious coping, social supports, and purpose in life. Mean age (standard deviation-SD) of participants was 66.7 (6.0) years. Mean total PTGI score (SD) was 66.3 (17.5), indicating a moderate degree of posttraumatic growth. The most strongly endorsed items corresponded to the Appreciation of Life and Personal Strength factors. The group as a whole was optimistic and reported moderate use of positive religious coping. Posttraumatic growth did not significantly differ in repatriates with and without psychopathology, but it was significantly positively correlated with dispositional optimism. In the final regression model, length of captivity and optimism were significant predictors of posttraumatic growth. Our findings confirm that it is possible to achieve long-lasting personal growth even in the face of prolonged extreme adversity. Prospective studies are needed to further evaluate whether pre-existing traits such as optimism can predict growth after trauma.
2008
Feder A; Southwick SM; Goetz RR; Wang Y; Alonso A; Smith BW; Buchholz KR; Waldeck T; Ameli R; Moore J; Hain R; Charney DS; Vythilingam M
Psychiatry
2008
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Journal Article
<a href="http://doi.org/10.1521/psyc.2008.71.4.359" target="_blank" rel="noreferrer">10.1521/psyc.2008.71.4.359</a>
How do teens view the physical and social impact of asthma compared to other chronic diseases?
Female; Humans; Male; Questionnaires; Social Adjustment; Motor Activity; adolescent; Adolescent Transitions; Chronic disease; Asthma/psychology
We surveyed cognitively normal teens with and without chronic illness regarding the perceived physical and social impact of various chronic diseases including asthma. The overall physical impact of asthma was perceived equivalently to diabetes and arthritis, but less than epilepsy, Down's syndrome, leukemia, and human immunodeficiency virus infection. However, asthma was rated to more commonly cause physical disability (p < 0.001) and restrict activities (p < 0.0005). The social impact of asthma was perceived equivalently to diabetes, but more favorably than the other chronic diseases surveyed. Specifically, teens with asthma were perceived as having fewer behavior problems, being more honest, popular, and fun to be around, but less adept at sports. Only 6 of 149 (4%) teens surveyed expressed any degree of reluctance to befriend peers with asthma.
2006
Wirrell E; Cheung C; Spier S
The Journal Of Asthma : Official Journal Of The Association For The Care Of Asthma
2006
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Journal Article
<a href="http://doi.org/10.1080/02770900500499038" target="_blank" rel="noreferrer">10.1080/02770900500499038</a>
A multi-dimensional approach to the transition of children with developmental disabilities into young adulthood: the acquisition of adult social roles
Child; Cross-Sectional Studies; Female; Humans; Male; Adult; Logistic Models; Questionnaires; Social Adjustment; adolescent; Adolescent Transitions; Social Behavior; Disabled Persons/psychology; Georgia; Developmental Disabilities/psychology
PURPOSE: To test the hypothesis that the difficulties young adults with developmental disabilities have in obtaining adult social roles are not inevitable consequences of their childhood impairment. We used the conceptual framework of the International Classification of Functioning, Disability, and Health to test this hypothesis. METHOD: We used a structured questionnaire to obtain information on the consequences of childhood impairment in young adulthood and to examine the relationship between impairment and acquisition of adult social roles. The sample (n = 635) came from the Metropolitan Atlanta Developmental Disabilities Follow-up Study of Young Adults, a population-based cohort of young adults aged 21 - 25 years identified at age 10 with childhood impairment. RESULTS: The results suggest that: (i) attaining adult social roles varies by impairment type and severity, (ii) experiencing activity limitations partially mediate the relationship between impairment and adult social roles, and (iii) attending postsecondary education increases the likelihood of attaining markers of adulthood. CONCLUSIONS: Intervention to reduce activity limitations and to develop strategies to increase attendance in postsecondary education may increase the likelihood for the acquisition of adult social roles among young adults with childhood impairment.
2006
Van Naarden Braun K; Yeargin-Allsopp M; Lollar D
Disability And Rehabilitation
2006
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Journal Article
<a href="http://doi.org/10.1080/09638280500304919" target="_blank" rel="noreferrer">10.1080/09638280500304919</a>
Brief report: family-based group intervention for young siblings of children with chronic illness and developmental disability
adolescent; Child; Female; Humans; infant; Male; Adult; Chronic disease; Follow-Up Studies; Siblings; Social Adjustment; Developmental Disabilities; Family Therapy; Analysis of Variance; Practice; Preschool; Adaptation; Psychological; Attitudes; PedPal Lit; Health Knowledge; Intervention; Interventions; sibling bereavement
OBJECTIVE: To evaluate the impact of a family-based group intervention for young siblings of children with chronic illness and developmental disability (CI/DD). METHODS: Forty-three healthy siblings (ages 4-7 years) of children with CI/DD and their parents participated in an intervention designed to address sibling challenges that cut across types of diagnostic conditions. The intervention consisted of six sessions of collateral and integrated sibling-parent groups. Measures of sibling knowledge, sibling sense of connectedness with other children in similar family circumstances, and sibling global functioning were collected before and after intervention. A subsample of 17 families completed a 3-month follow-up. RESULTS: Siblings' knowledge of the child's disorder and sibling connectedness increased significantly from pre- to posttreatment for both boys and girls, regardless of the nature of the brother or sister's condition. Sibling perceptions of self-competence increased from pre- to posttreatment, whereas parent reports of sibling behavioral functioning remained within the normal range. Improvements in sibling knowledge and connectedness maintained at follow-up. Parent satisfaction with the program was high. CONCLUSIONS: Results support more controlled evaluations of family-based intervention to improve young sibling adaptation to CI/DD.
2005-12
Lobato DJ; Kao BT
Journal of Pediatric Psychology
2005
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Journal Article
<a href="http://doi.org/10.1093/jpepsy/jsi054" target="_blank" rel="noreferrer">10.1093/jpepsy/jsi054</a>
Brief report: psychosocial adjustment in adolescents with inflammatory bowel disease
Female; Humans; Male; United States; Family Relations; Social Adjustment; Case-Control Studies; adolescent; Adaptation; Psychological; Adolescent Transitions; Inflammatory Bowel Diseases/psychology
BACKGROUND: Inflammatory bowel disease (IBD) is an ideal disease for investigating adolescent adjustment to chronic illness, given its embarrassing, socially limiting, appearance-changing symptoms and adolescent onset. OBJECTIVE: To compare psychosocial adjustment among adolescents with a chronic illness to that of healthy adolescents and examine the role of adolescent disease onset. METHODS: Participants were 50 adolescents with IBD and their parents, and parents of 42 healthy comparison adolescents who completed questionnaires assessing behavioral, emotional, social, and family functioning. RESULTS: Adolescents with IBD were reported to have worse anxious and/or depressed and social problems than healthy adolescents. More adolescents with IBD were reported to have clinically significant social problems. Those diagnosed during adolescence were reported to have significantly worse social competence scores. CONCLUSIONS: Adolescents with a chronic illness such as IBD may be at higher risk for specific psychosocial difficulties than healthy adolescents. Diagnosis of a chronic illness during adolescence may have implications for social functioning.
2006
Mackner LM; Crandall WV
Journal of Pediatric Psychology
2006
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Journal Article
<a href="http://doi.org/10.1093/jpepsy/jsj023" target="_blank" rel="noreferrer">10.1093/jpepsy/jsj023</a>
Constructing a prospective model of psychosocial adaptation in young adolescents with spina bifida: an application of optimal data analysis
Child; Female; Humans; Male; Prospective Studies; Self Concept; Longitudinal Studies; Sick Role; Social Adjustment; Conflict (Psychology); Motivation; Body Image; Stress; adolescent; Adaptation; Psychological; Models; Family/psychology; Statistical; Adolescent Transitions; Parents/psychology; Psychological/complications; Social Behavior; Educational Status; Individuation; Intelligence; Spinal Dysraphism/psychology
OBJECTIVE: To examine how individual- and family-level predictors in late childhood and preadolescence relate to psychosocial adaptation (i.e., scholastic success, social acceptance, and positive self-worth) in early adolescence. METHOD: This prospective longitudinal study includes 68 families of children with spina bifida and 68 comparison families of healthy children. Multimethod, multiinformant data were evaluated via optimal data analysis (ODA) and classification tree analysis (CTA) techniques. RESULTS: Factors best predicting psychosocial adaptation in early adolescence included (a) intrinsic motivation, (b) estimated verbal IQ, (c) behavioral conduct, (d) coping style, and (e) physical appearance. There were no significant group (spina bifida vs. able-bodied) effects. CONCLUSIONS: The final classification model correctly classified 77.8% of the total sample, indicating that this model had significant predictive capabilities. Results suggested that processes leading to psychosocial adaptation may be similar for youth with and without chronic illness.
2006
Coakley RM; Holmbeck GN; Bryant FB
Journal of Pediatric Psychology
2006
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Journal Article
<a href="http://doi.org/10.1093/jpepsy/jsj032" target="_blank" rel="noreferrer">10.1093/jpepsy/jsj032</a>
Family focused grief therapy: a randomized, controlled trial in palliative care and bereavement
Female; Humans; Male; Grief; Palliative Care; Terminal Care; Adult; Follow-Up Studies; Middle Aged; Family Relations; Treatment Outcome; Longitudinal Studies; Social Adjustment; Family Health; Personality Inventory; Stress; bereavement; Caregivers/psychology; Family/psychology; SSHRC CURA; Family Therapy/methods; Depressive Disorder/therapy; Psychological/therapy
OBJECTIVE: The aim of family focused grief therapy is to reduce the morbid effects of grief among families at risk of poor psychosocial outcome. It commences during palliative care of terminally ill patients and continues into bereavement. The authors report a randomized, controlled trial. METHOD: Using the Family Relationships Index, the authors screened 257 families of patients dying from cancer: 183 (71%) were at risk, and 81 of those (44%) participated in the trial. They were randomly assigned (in a 2:1 ratio) to family focused grief therapy (53 families, 233 individuals) or a control condition (28 families, 130 individuals). Assessments occurred at baseline and 6 and 13 months after the patient's death. The primary outcome measures were the Brief Symptom Inventory, Beck Depression Inventory, and Social Adjustment Scale. The Family Assessment Device was a secondary outcome measure. Analyses allowed for correlated family data and employed generalized estimating equations based on intention to treat and controlling for site. RESULTS: The overall impact of family focused grief therapy was modest, with a reduction in distress at 13 months. Significant improvements in distress and depression occurred among individuals with high baseline scores on the Brief Symptom Inventory and Beck Depression Inventory. Global family functioning did not change. Sullen families and those with intermediate functioning tended to improve overall, whereas depression was unchanged in hostile families. CONCLUSIONS: Family focused grief therapy has the potential to prevent pathological grief. Benefit is clear for intermediate and sullen families. Care is needed to avoid increasing conflict in hostile families.
2006
Kissane DW; McKenzie M; Bloch S; Moskowitz C; McKenzie DP; O'Neill I
The American Journal Of Psychiatry
2006
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Journal Article
<a href="http://doi.org/10.1176/appi.ajp.163.7.1208" target="_blank" rel="noreferrer">10.1176/appi.ajp.163.7.1208</a>
The search for social safety and comfort in families raising children with complex chronic conditions
Child; Female; Humans; Male; United States; Adult; Interpersonal Relations; Social Adjustment; Family Nursing; Preschool; Adaptation; Psychological; Family/psychology; Parent caregivers; Chronic Disease/nursing/psychology; Developmental Disabilities/nursing/psychology; Leisure Activities
Social consequences of raising children who were medically fragile and developmentally delayed (MF/DD) were explored in an ethnographic study of 20 families with school-age children. The overarching theme was the families' search for safety and comfort in social situations. Major categories comprising this theme included the need to anticipate and plan for the child's care; overcoming environmental, child-related, and attitudinal barriers; and finding social activities that were comfortable for all members of the family. When this search was successful, families could relax, and all members could participate in a variety of social encounters and activities; but when safety and comfort could not be achieved, families were likely to limit social activities or split the family so that the child who was MF/DD could be cared for while other family members participated in social events.
2005
Rehm RS; Bradley JF
Journal Of Family Nursing
2005
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Journal Article
<a href="http://doi.org/10.1177/1074840704272956" target="_blank" rel="noreferrer">10.1177/1074840704272956</a>
The effects of self-help and psychotherapy intervention on child loss: the limits of recovery
Child; Female; Humans; Male; Grief; Social Adjustment; Self-Help Groups; Combined Modality Therapy; Non-U.S. Gov't; P.H.S.; Research Support; U.S. Gov't; Adaptation; Psychological; Parents/psychology; Intervention; Interventions; Adjustment Disorders/therapy; Psychotherapy/methods
Results of a longitudinal study of the effects of bereaved parents' participation in a self-help group and in psychotherapy are presented. Active self-help group participants evidenced unique changes in attitudes about bereavement. Reasons for lack of differences in mental health, marital, and parental roles are discussed.
Videka-Sherman L; Lieberman M
The American Journal Of Orthopsychiatry
1985
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Journal Article
<a href="http://doi.org/10.1111/j.1939-0025.1985.tb03422.x" target="_blank" rel="noreferrer">10.1111/j.1939-0025.1985.tb03422.x</a>
Habitual somatic discomfort in a representative sample of adolescents
Female; Humans; Male; Social Adjustment; Personality Inventory; adolescent; Adaptation; Psychological; social support; Personality Development; Set (Psychology); Somatoform Disorders/psychology
The study is concerned with relations between habitual somatic discomfort, assessed by means of a questionnaire, and indicators of psychosocial adjustment, in a representative sample of 15-16 yr-old Finnish girls (N = 179) and boys (N = 205). Symptom prevalence was associated with anxiety, negative relations with parents, modest plans for education, fear of the future, loneliness, smoking, and drinking. These associations were significant for the boys but not for the girls. High symptom scores also tended to be associated with difficult peer relations (fighting, being target of peers' verbal aggression), and with the use of aggressive and the lack of constructive coping strategies in conflict situations. Boys who often felt lonely and girls who had been involved in physical fights with peers had consistently high scores. Different symptom patterns and sex differences are discussed.
1992
Rauste-von WM; von Wright J
Journal Of Psychosomatic Research
1992
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Journal Article
<a href="http://doi.org/10.1016/0022-3999(92)90074-c" target="_blank" rel="noreferrer">10.1016/0022-3999(92)90074-c</a>
Chronic disease and perceived developmental progression in adolescence
Female; Humans; Male; Peer Group; Sick Role; Social Adjustment; Body Image; adolescent; Adaptation; Psychological; Adolescent Transitions; Activities of Daily Living/psychology; Personality Development; Diabetes Mellitus; Life Style; Type 1/psychology
This study examined whether chronic illness causes delays in adolescents' perceived developmental status. Longitudinal data were obtained from 86 adolescents afflicted with insulin-dependent diabetes mellitus and 103 healthy adolescents. The adolescents annually completed a questionnaire pertaining to their current developmental status and their desired future developmental status in 11 age-specific developmental tasks. Health status and physical maturity were also determined. In the first year of the study, the diabetics reported delays compared with their healthy peers in some developmental tasks, particularly physical maturity and an independent lifestyle. However, the overall developmental progression perceived by chronically ill adolescents was impressive. The difficulty of balancing normative development with the demands of chronic illness is discussed.
1998
Seiffge-Krenke I
Developmental Psychology
1998
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Journal Article
<a href="http://doi.org/10.1037//0012-1649.34.5.1073" target="_blank" rel="noreferrer">10.1037//0012-1649.34.5.1073</a>
Making sense of loss and benefiting from the experience: two construals of meaning
Female; Humans; Male; Grief; Adult; Interpersonal Relations; Middle Aged; Social Adjustment; Cognition; Life Change Events; Spirituality; Analysis of Variance
Theoretical models of the adjustment process following loss and trauma have emphasized the critical role that finding meaning plays. Yet evidence in support of these models is meager, and definitions of meaning have been too broad to facilitate a clear understanding of the psychological process involved. Using a prospective and longitudinal study of people coping with the loss of a family member, we differentiate 2 construals of meaning--making sense of the event and finding benefit in the experience--and demonstrate that both independently play roles in the adjustment process following the loss. Results indicate that making sense of the loss is associated with less distress, but only in the 1st year postloss, whereas reports of benefit finding are most strongly associated with adjustment at interviews 13 and 18 months postloss.
1998
Davis CG; Nolen-Hoeksema S; Larson J
Journal Of Personality And Social Psychology
1998
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Journal Article
<a href="http://doi.org/10.1037//0022-3514.75.2.561" target="_blank" rel="noreferrer">10.1037//0022-3514.75.2.561</a>
A community survey of children with severe intellectual disability and their families: psychological adjustment, carer distress and the effect of respite care
Child; Female; Humans; Male; Questionnaires; Severity of Illness Index; Social Adjustment; Respite Care; Stress; Adaptation; Psychological; Caregivers/psychology; Family/psychology; Parent caregivers; Psychological/psychology; Community Mental Health Services; Mental Retardation/diagnosis
The present paper describes a cross-sectional study of the psychosocial adjustment of 143 children with severe disability and their families identified from a regional case register for children with special needs. Thirty-eight per cent of the children had significant psychiatric morbidity. By contrast, the overall level of distress in carers was not that different from probable community prevalence figures. Nevertheless, distress among carers was consistently associated with increased disability in the child. Although respite care is a valuable resource for many carers, its use is indicative of underlying distress in the carer.
1998
Hoare P; Harris M; Jackson P; Kerley S
Journal Of Intellectual Disability Research
1998
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Journal Article
<a href="http://doi.org/10.1046/j.1365-2788.1998.00134.x" target="_blank" rel="noreferrer">10.1046/j.1365-2788.1998.00134.x</a>
Predictors of distress in parents of children with cancer: a prospective study.
Child; Female; Humans; Male; Parent-Child Relations; Questionnaires; Prospective Studies; Longitudinal Studies; Social Adjustment; Cost of Illness; Internal-External Control; Stress; adolescent; Non-U.S. Gov't; Research Support; Adaptation; Psychological; Parents/psychology; Neoplasms; social support; Psychological/psychology; Depression/diagnosis/drug therapy/psychology
OBJECTIVE: To investigate levels of psychological distress in parents of children with cancer and relationships between distress and measures of illness variables, appraisal, psychosocial resources and coping strategies. METHODS: Questionnaires were completed by 68 mothers and 58 fathers at 6 (Time 1) and 18 (Time 2) months post-diagnosis. RESULTS: High levels of distress for 51% of mothers and around 40% of fathers were apparent at both time points, with little change over time. For mothers, their appraisal of the strain of the illness, and their own ability to deal with it, and family cohesion were predictive of distress, both concurrently and prospectively, and, at Time 1, greater use of self-directed coping strategies was related to higher levels of distress. For fathers, risk factors of employment problems (Time 1) and the number of the child's hospital admissions (Time 2) were significant, along with appraisal and family cohesion. CONCLUSIONS: Continuation of high levels of distress over time points to the importance of identification of those at risk at an early stage and provision of ongoing support. Implications for such support are discussed.
2000
Sloper P
Journal Of Pediatric Psychology
2000
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Journal Article
<a href="http://doi.org/10.1093/jpepsy/25.2.79" target="_blank" rel="noreferrer">10.1093/jpepsy/25.2.79</a>
Effects of sudden infant death on bereaved siblings: a comparative study
Child; Female; Humans; infant; Male; bereavement; mothers; social support; Social Adjustment; Sibling Relations; Internal-External Control; Preschool; Adaptation; Psychological; Grief; sibling bereavement; Sudden Infant Death; Child Behavior Disorders
This study investigated behavioural problems (as rated by mothers) in 38 children who had been suddenly bereaved of an infant sibling between 3 and 27 months previously. These children were compared with 40 children matched on age, gender, family composition and social background. Bereaved siblings were reported to have a prolonged and significantly elevated rate of non-specific behavioural problems. It is argued that, either the bereaved children's problems were real, or bereaved mothers' perceptions of their surviving children were significantly distorted. In either case, there is serious cause for concern about the welfare of children in families bereaved by Sudden Infant Death Syndrome.
1994-05
Hutton CJ; Bradley BS
Journal Of Child Psychology And Psychiatry, And Allied Disciplines
1994
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Journal Article
<a href="http://doi.org/10.1111/j.1469-7610.1994.tb01217.x" target="_blank" rel="noreferrer">10.1111/j.1469-7610.1994.tb01217.x</a>
Positive and negative life changes following bereavement and their relations to adjustment
Grief; Social Adjustment; Life Change Events; bereavement
1993
Lehman DR; Davis CG; DeLongis A; Wortman CB; Bluck S; Mandel DR; Ellard JH
Journal Of Social And Clinical Psychology
1993
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1521/jscp.1993.12.1.90" target="_blank" rel="noreferrer">10.1521/jscp.1993.12.1.90</a>
Indicators of family resilience after the death of a child
Child; Female; Humans; infant; Male; Adult; Parent-Child Relations; Parents; Anecdotes as Topic; Middle Aged; Self Concept; Attitude to Death; social support; Social Adjustment; Survivors; Self-Help Groups; Belgium; Preschool; Adaptation; Psychological; Newborn; Grief; sibling bereavement; Resilience; Object Attachment
The aim of this study was to identify and describe resilience qualities in families after losing a child. Questionnaires, including an open-ended question, were utilized to collect data independently from the parents and siblings of the deceased in 89 Belgian families. The results indicate that family strengths in general, and commitment to the family in particular, helped the families' adaptation after the loss. In addition, the adaptation process after the loss was aided if the family members viewed the crisis as a challenge. Both the siblings and the parents indicated that the extent to which a family experienced support from the community was directly related to family adaptation after the loss. Redefining the situation and utilizing social support from friends and family were underlined as effective family coping strategies. The findings could be used in interventions to promote family resilience, thereby affirming the reparative potential of families.
Greeff AP; Vansteenwegen A; Herbiest T
Omega
2011
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.2190/om.63.4.c" target="_blank" rel="noreferrer">10.2190/om.63.4.c</a>
Trauma and transformation: growing in the aftermath of suffering
Self Concept; Social Adjustment; Life Change Events; psychological; stress
Tedeschi RG; Calhoun LG
1995
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Book/Book Section
Unraveling the mystery of health: how people manage stress and stay well
Social Adjustment; Health Behavior; psychological; stress
Antonovsky A
1987
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Book/Book Section
Conceptual and measurement issues in the study of coping with chronic stress
stress; psychological; caregivers; Adaption; Psychology; Social Adjustment
Gottlieb BH
Coping With Chronic Stress
1997
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Book/Book Section
Psychosocial Health Outcomes for Family Caregivers Following the First Year of Bereavement
Bereavement; Adolescent; Adult; Aged; Caregivers/ Psychology; Depression/epidemiology/etiology; Health Status; Humans; Middle Aged; Psychiatric Status Rating Scales; Psychological Tests; Psychology; Social Adjustment; Spouses/psychology; Stress Psychological/epidemiology; Stress Psychological/etiology; Time Factors; Young Adult
The authors examined psychosocial outcomes following the first year of bereavement, for 51 family caregivers, including both spouses and offspring. Researchers assessed caregivers during palliative care and again during the second year of bereavement, for social functioning, depression, and distress. For all family caregivers, only depression scores declined significantly between T1 and T2 (p < 0.05). Caregiver relationship and gender did not make a difference in recovery. Results demonstrate that poor psychosocial health outcomes exist beyond the first year of bereavement. Early identification of these caregivers is necessary to provide mental health professionals the opportunity to intervene proactively.
Masterson MP; Hurley KE; Zaider T; Corner G; Schuler T; Kissane DW
Death Studies
2015
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="https://doi.org/10.1080/07481187.2014.985406">10.1080/07481187.2014.985406</a>