‘I’ve got to prioritise’: being a parent with cystic fibrosis

Due to advances in earlier diagnosis and treatment, the life expectancy of a person born with cystic fibrosis (CF) has increased. Therefore, more people with CF are becoming parents but the psychological understanding of CF has lagged behind advances in medical treatment; there is very limited applied psychological research on which parents and professionals can draw when considering issues of parenting in this context. This qualitative research explored how mothers and fathers with CF experience and manage the dual roles of being a parent and living with CF. The aim was to facilitate development of an understanding of experience rather than test existing theory. A qualitative methodology was chosen as it allowed participants to reflect openly on their individual experiences. Nine participants completed semi-structured interviews either in their own homes or a clinic base which examined parenting, CF and the interaction between the two roles. Four participants were male and five were female with an age range of 21–50. Interpretive Phenomenological Analysis was used to interpret the participants’ accounts and generate super-ordinate and master themes. ‘Being a parent on compressed time’ was the super-ordinate theme which reflected the challenge of parenting within both a limited life trajectory and a complex treatment regime with daily adherence and time pressures. The findings have implications for parents with CF, those considering parenting and for health professionals working in CF services whose guidance needs to be grounded in an evidence-base. Further research is needed to explore the experiences of parents within different family structures, parents who have had a transplant and the perspectives of others in the wider system in which parents with CF are located.     

Family Functioning,Parental Psychological Distress and Child Behaviours: Evidence from the Victorian Child Health and Wellbeing Study

We examined, using data from the 2006 Victorian Child Health and Wellbeing Study (VCHWS), whether family functioning is associated with parental psychological distress and children's behavioural difficulties. The VCHWS was a statewide cross‐sectional telephone survey to 5,000 randomly selected primary caregivers of 0‐ to 12‐year‐old children between October 2005 and March 2006. Only parents or guardians of children aged 4–12 years (n = 3,370) were included in this study. After adjusting for sociodemographic variables and ethnicity, parents or guardians scoring higher on the family functioning scale (i.e., from poorly functioning households) were at greater risk of psychological distress and had children with lower levels of prosocial behaviour and higher levels of behavioural difficulties relative to those from healthily functioning households. Mental health prevention programmes addressing child mental and conduct problems should consider the family environment and target those families functioning poorly.     

Parent routines for managing cystic fibrosis in children

Management of cystic fibrosis (CF) is burdensome and adherence is often suboptimal. Family routines are associated with adherence and health outcomes in other disease populations. Few studies have examined routines in CF. The study’s aim was to describe parent experiences developing and utilizing CF care routines. Semi-structured interviews with a convenience sample of 25 parents of children under 13 years of age with CF were analyzed using phenomenological analysis. Three domains emerged: parent experiences developing a routine, support systems facilitating maintenance of routines, and challenges with maintaining care routines. Parents found routines difficult to establish, used trial and error, encountered barriers, and found support helpful to manage care demands. Some parents chose to deviate from their routine. Providing anticipatory guidance to promote the use of care routines and strategies to manage potential challenges may facilitate use of routines and improve CF management.     

Theory of Mind Understanding and Conversational Patterns in Middle Childhood

The author investigated the longitudinal relations between theory of mind (ToM) understanding and perceptions of self and social conversations in 17 school-aged children (12 girls, 5 boys, age 8–12 years). ToM was assessed at Time 1 (T1; M age = 8 years 5 months, SD = 8.7 months, and perceptions of self and conversational experiences assessed two years later at Time 2 (T2; M age = 10 years 4 months, SD = 7.9 months. Most importantly, longitudinal findings showed that children who scored relatively high on ToM at T1 reported relatively lower perceptions of self-worth and higher number of mental states verbs in their perceptions of peer and family conversations at T2. Significant negative longitudinal associations were found between children's number of siblings and their perceptions of self-worth (T1) and number of cognitive terms in their perceptions of peer and family conversations (T2). Frequency analysis suggested that girls’ perceptions of conversations referred to more social and psychological aspects of self and relationships, whereas boys focused mainly on physical activities. Most children were more likely to prefer listening to talking during social conversations. The majority of children reported feelings of mixed or ambiguous emotions during experiences of silence. Implications for socioemotional and cognitive development in early adolescents are discussed.     

Psychological functioning in siblings of children with Attention Deficit Hyperactivity Disorder

We examined psychological functioning in siblings of children with Attention Deficit Hyperactivity Disorder (ADHD). Siblings of children diagnosed with ADHD (n = 45) between the ages of 9 and 13 and a control group (n = 46) within the same age range composed of siblings of children with no diagnosed disorders completed measures of psychological functioning. A significant multivariate difference was observed on these measures across groups. Post hoc investigation of the univariate means revealed one significant group difference, which occurred on a measure of Trait Anger. This finding suggests that future research on family members of children with ADHD may be warranted.     

Caring for children with an intellectual disability: An exploratory qualitative study

This study explored family caregiver experiences of children with an intellectual disability in a rural South African day-care centre. The family caregivers (N = 15; mothers = 60%; age range = 35 to 68 years) completed in-depth interviews regarding their experiences providing care to children with intellectual disability. Data collection and analysis was done using phenomenological methods. The following themes emerged to characterise the family caregiver experiences: deeper understanding of intellectual disability; disability disclosure conditions; and social and economic support needs. Family support emerged as an important factor in the relationship between caregivers’ psychological stress and well-being.     

Psychosocial issues among children and adolescents in an integrated paediatric HIV psychology service in Botswana

This study explored the psychosocial issues faced by children and adolescents with HIV in Botswana. Data on psychosocial issues were collected from 27 young children aged 5–9 years and 128 adolescents aged 10–19 years (n = 155). Data were analysed using Microsoft Excel 2007 and MiniTab16. The most frequently identified psychosocial issues were behaviour problems (70%), family issues (58%), and HIV medication adherence (57%). Compared to young children, adolescents were more likely to have HIV medication adherence issues. Missed appointments were most commonly attributed to patient forgetfulness (21%) and conflicting appointments (18%).     

Adolescents-Family Connectedness: A First Cross-Cultural Research on Parenting and Psychological Adjustment of Children

Connectedness between children and their family is a major factor that distinguishes between collective and individualistic cultures. The Multigenerational Interconnectedness Scale, measuring adolescents-family connectedness was administered to adolescents in nine western and eastern countries. The findings show that connectedness in eastern countries was higher than that in western ones. Female adolescents were more connected to their families than males. Connectedness was higher among families with a higher economic level and where the parents had more education. Financial and functional connectedness was associated with adolescents’ better mental health, whereas emotional connectedness (or dependency) was associated with psychological disorders. The association between connectedness and psychological disorders was not the same across countries.     

Resilience,religiosity and treatment adherence in hemodialysis patients: a prospective study

Resilience and religiosity have received attention as an important process in the experience and management of chronic comorbidities; however, there is no study evaluating resilience in hemodialysis patients and its association with other psychological dimensions or with treatment adherence. This observational prospective study assessed resilience (25 item Wagnild and Young Resilience Scale), religiosity under three dimensions (organizational, non-organizational and intrinsic) using DUREL scale, depressive symptoms (Patient Health Questionnaire-9) and health-related quality of life (Short Form-36 questionnaire). The main outcomes were medication adherence using the Morisky Medication Adherence Scale-8 (MMAR-8) and the missing/shortened dialysis sessions in the following six months. Of 208 patients approached, 202 (97.1%) agreed to participate. One hundred twenty-three patients (60.9%) were males and mean age was 52.8 ± 14.8 years-old. The median time on hemodialysis was 36 months (IQR, 12, 84). 82 (40.6%) patients obtained a MMAS-8 score <6 and were considered as having ‘poor adherence’. Overall, the mean score of medication adherence was low (5.7 ± 2.1). About adherence to hemodialysis sessions, patients missed a total of 234 (1.6%) hemodialysis sessions. Forty-eight patients (23.7%) missed an average of at least three sessions in six months. Regarding adherence to medication, there was no association in the uni- or multivariate analysis between religiosity dimensions and MMAS-8 score. After adjustment, resilience was positively associated with MMAS-8 score (standardized β coefficient .239, p = .016). Organized and intrinsic religiosity were associated with adherence to dialysis sessions (standardized β coefficient .258, p = .004 and .231, p = .026, respectively). Interestingly, opposite to medication adherence, more resilient patients were associated with less adherence to hemodialysis sessions (standardized β coefficient ?.296, p = .001). Religiosity was associated with dialysis adherence but not with medication adherence. Resilience was associated with higher medication adherence but lower adherence to dialysis sessions.     

Co‐Occurring Trajectory of Mothers’ Substance Use and Psychological Control and Children's Behavior Problems: The Effects of a Family Systems Intervention

This study examined the effects of a family systems therapy (Ecologically‐Based Family Therapy [EBFT]) on the co‐occurring trajectory of mothers’ substance use and psychological control, and its association with children's problem behaviors. Participants included 183 mothers with a substance use disorder who had at least one biological child in their care. Mothers were randomly assigned to one of the three intervention conditions: EBFT—home, n = 62; EBFT—office, n = 61; or Women's Health Education, n = 60. Participants were assessed at baseline, 3, 6, 12, and 18 months post‐baseline. A dual‐trajectory class growth analysis identified three groups of mothers in regard to their change trajectories. The majority of the mothers exhibited a synchronous decrease in substance use and psychological control (n = 107). In all, 46 mothers exhibited a synchronous increase in substance use and psychological control. For the remaining 30 mothers, substance use and psychological control remained stable. Mothers in the family therapy condition were more likely to show reduced substance use and psychological control compared to mothers in the control condition. Moreover, children with mothers who showed decreased substance use and psychological control exhibited lower levels of problem behaviors compared to children with mothers showing increased substance use and psychological control. The findings provide evidence for the effectiveness of family systems therapy, EBFT, in treating mothers’ substance use, improving parenting behaviors, and subsequently improving child behavioral outcomes.     

Primary and Secondary Caregiver Reports of Quality of Life in Pediatric Asthma: Are they Comparable?

This study aimed to compare primary and secondary caregiver QOL within families of children with asthma and determine the potential importance of including secondary caregiver QOL in clinical and research settings. Participants included 118 families of children with asthma that had primary and secondary caregivers. Families completed measures in a single research session. Caregivers reported on QOL, psychological functioning, and family burden; children completed a measure of QOL. Child lung function was determined from objective spirometry. Adherence to prescribed controller medication was measured for 6 weeks following the research visit. Primary caregiver QOL was significantly lower than secondary caregiver QOL (Mean overall QOL of 5.85 versus 6.17, p < .05). Better medication adherence was associated with higher primary caregiver QOL (ρ = .22, p = .02); secondary caregiver QOL, not primary caregiver QOL, was positively associated with child QOL (ρ = .20, p = .03). Families with discrepant QOL scores between caregivers (difference in scores of at least .50) were characterized by more family burden and primary caregiver psychological symptoms. Differences in QOL scores between caregivers may be a reflection of primary caregivers’ greater investment in daily asthma management. In families reporting low burden and few psychological difficulties in the primary caregiver, QOL assessments from either caregiver may may be informative and representative of how parents are adapting to child asthma. In families experiencing high levels of burden or more primary caregiver psychological difficulties, QOL reports from secondary caregivers may not be as clinically meaningful.     

Family Cohesion and Health-Related Quality of Life of Children with Type 1 Diabetes: The Mediating Role of Parental Adjustment

Despite the increasing number of studies on the health-related quality of life (HRQOL) of children with type 1 diabetes (T1D), little is known about the influence of family and parental factors on this outcome. This study aimed to explore whether family cohesion and children’s HRQOL were connected through three indicators of parental psychological adjustment (parenting stress, depressive symptoms, and anxious symptoms) as well as whether these links varied according to the child’s age. Levels of family cohesion, parenting stress, and depression/anxiety symptoms of parents of children with T1D and parents of healthy children were compared. The sample included 88 child–parent dyads composed of children/adolescents (8–18 years old) with T1D and one of their parents and 121 dyads composed of healthy children/adolescents and one of their parents. The parents completed self-report measures of family cohesion, parenting stress, and emotional adjustment, and the children completed measures of HRQOL. Testing of the hypothesized moderated mediational model showed that higher HRQOL ratings in children were associated with higher levels of cohesion through lower levels of parental stress, regardless of the child’s age. Parents of children with T1D perceived less cohesion and felt more anxiety and stress about parenting tasks compared to parents of healthy children. Our findings suggest that parents of children with T1D are at an increased risk of psychological maladjustment. Moreover, this study highlights the interrelation between family/parental functioning and child adjustment and makes an innovative contribution by identifying a mechanism that may account for the link between family and child variables.     

Change in the Psychological Adjustment of Children with Cystic Fibrosis or Sickle Cell Disease and Their Mothers

Objectives: This study has three interrelated objectives: (1) to track the adjustment of children and adolescents with sickle cell disease (SCD) or cystic fibrosis (CF) and their mothers through a third assessment point 2 years after the initial assessment; (2) to determine whether the adaptational processes of the transactional stress and coping model associated with adjustment at the initial assessment continue to be associated with adjustment 2 years later; and (3) to determine whether the pattern of association of adaptational processes with adjustments differs by illness subgroup. Methods: The study samples included 59 children with CF and 50 children with SCD and their mothers. Measures were obtained on maternal adjustment and appraisals of daily and illness stress, coping methods, and family functioning. Child measures included child-reported and mother-reported child adjustment and child perceptions of self-worth and health locus of control and pain coping methods. Results: Consistency in adjustment classification was only 31–32% for child self-report, 66% for mother-reported child behavior problems, and 56–77% for mother self-reported adjustment for the CF and SCD groups, respectively. Support was provided for the association of adaptational processes with maternal adjustment and with the adjustment of children with SCD but not for children with CF. Conclusion: The stability of adjustment has implications for prevention and treatment intervention and subsequent research steps. Intervention efforts should be focused on the relatively small subgroups of children with chronic illnesses and their mothers with consistently poor adjustment.     

An Examination of Race Differences in Patients' Psychological Adjustment to Cancer

Although African Americans are at increased risk of cancer morbidity and mortality, very little is known about their psychological adjustment. African American males may be at especially high psychological risk, considering their disproportionately higher cancer mortality. Subjects were 42 African American and 56 White adults similar in age, cancer stage, marital status, and socioeconomic status. Analyses revealed no significant race or gender effects on global indices of psychological adjustment, depression, or anxiety. However, African Americans were more likely than Whites (a) to use avoidant coping strategies in dealing with the exigencies of their illness, (b) to report more cancer-related disruption in family relations, and (c) to identify fewer individuals in their social support network. No significant race differences were found on a measure of health care satisfaction. These findings highlight the need to provide a more comprehensive examination of individual, family, and socioecological variables and their relationship to psychological adaptation among minorities with cancer.     

Illness perceptions and self efficacy beliefs in adolescents and young adults with insulin dependent diabetes mellitus

Abstract

The study examined the role of illness perceptions and self-efficacy in diabetic regimen adherence and metabolic control among young patients with Insulin Dependent Diabetes Mellitus (IDDM). Sixty-four outpatients with Insulin Dependent Diabetes completed measures of illness perceptions, generalised and diabetes specific self-efficacy and a self-report measure of adherence. Metabolic control (HbAlc) was also assessed. Control, identity and consequences components of illness perceptions were significantly correlated with self-efficacy expectancies. Control beliefs were consistently associated with self-reported adherence across all treatment aspects and accounted for 39% of the predicted variance in total adherence. The associations of the other psychological predictors examined, varied depending on the regimen area. Multiple regression analysis showed that 30.8% of the variance in HbAlc assays was explained by patients' diabetes specific self-efficacy, consequences and identity. Our findings suggest that patients' beliefs are useful predictors of physiological and behavioural outcomes in diabetes self-management and should thus be the focus of routine clinical assessments and future interventions.     

The Role of Parents in Emerging Adults’ Psychological Well‐Being: A Person‐Oriented Approach

The purpose of this study was to gain an overview of Spanish emerging adults’ family relationships and their link with psychological well‐being and psychological distress. The sample comprised 1502 undergraduate students (903 women and 599 men) aged between 18 and 29 (M = 20.32 and SD = 2.13), recruited from two universities in Spain. A cluster analysis identified three groups of families based on the centrality of five family variables: parental involvement, parental support for autonomy, parental warmth, behavioral control, and psychological control. The three groups or clusters were labeled high‐quality family relationships (HQ), intermediate‐quality family relationships (IQ), and low‐quality family relationships (LQ). Women were overrepresented in the HQ cluster, whereas men were overrepresented in the IQ cluster. Moreover, emerging adults who perceived better family relationships (high levels of parental involvement, parental support for autonomy and parental warmth, and low levels of behavioral and psychological control) were found to have a higher level of psychological adjustment. Thus, our results indicate that family plays a key role in the psychological well‐being of emerging adults. The discussion focuses on the implications of this finding for the parent‐child relationship, and explores how it extends our knowledge about family relationships during emerging adulthood.     

Family Management of Pediatric Cancer: Links with Parenting Satisfaction and Psychological Distress

Research has long acknowledged the disruptions posed by pediatric cancer diagnosis and treatment to family life. Nonetheless, the mechanisms through which the family response influences parents’ mental health in this adverse context are not fully understood. The main goal of the present study was to examine the direct and indirect links, via parenting satisfaction, between family condition management and psychological distress of parents of children with cancer. Participants were 201 parents (86.6% mothers) of children/adolescents diagnosed with cancer who completed self‐report questionnaires assessing family condition management (family life difficulty and parental mutuality), parenting satisfaction, and psychological distress (anxiety and depression). Structural equation modeling was used to test the proposed mediation model. The results showed that parenting satisfaction mediated the association between both the family condition management dimensions (family life difficulty and parental mutuality) and depression. Specifically, greater family life difficulties and lower parental mutuality were associated with lower parenting satisfaction, which, in turn, was associated with higher levels of depression. Additionally, greater family life difficulties and lower parental mutuality were directly linked to higher levels of anxiety. Multigroup analyses suggested that the model was valid across patient age groups (children vs. adolescents) and treatment status (on vs. off‐treatment). These findings reinforce the need for family‐ and parent‐based interventions in the pediatric oncology field. Interventions that target families’ difficulties and promote their resources are likely to foster parenting satisfaction and psychological adjustment.     

Children’s Life Satisfaction: Developmental Trajectories and Environmental and Personality Predictors

Life satisfaction is a key indicator of children’s healthy development. Although the developmental changes of life satisfaction during adolescence have been investigated, the developmental trajectories of life satisfaction and related predictors during childhood remain unclear. Thus, the current study aimed to identify the developmental trajectories of life satisfaction covering the period from middle to late childhood as well as to examine the predictive roles of environmental factors (i.e., family dysfunction and basic psychological needs satisfaction at school), personality factors (i.e., neuroticism and extraversion), and their interactions in these developmental trajectories. An accelerated longitudinal design was used with Chinese elementary school students (N?=?1069, 45.8% girls, M _age?=?9.43, SD?=?0.95) of 3 cohorts (grade 3, grade 4, and grade 5) on 4 occasions at 6-month intervals. Growth mixture modeling analyses revealed three distinct trajectories of life satisfaction: “High-Stable” (88.8%), “High-Decreasing” (6.8%), and “Low-Increasing” (4.4%). Multivariate logistic regression analyses revealed that family dysfunction and neuroticism served as risk factors for adverse developmental trajectories of life satisfaction; whereas basic psychological needs satisfaction at school served as a protective factor. Furthermore, the interaction between family dysfunction and extraversion suggested that higher levels of extraversion buffered children against the negative effect of family dysfunction on the development of life satisfaction. The identification of three heterogeneous trajectory groups of children’s life satisfaction and key personality and environmental predictors associated with the trajectories suggests that specific interventions need to be tailored to the unique characteristics of the relevant trajectory groups.

     

Consequences of ‘tiger’ parenting: a cross‐cultural study of maternal psychological control and children's cortisol stress response

Parenting strategies involving psychological control are associated with increased adjustment problems in children. However, no research has examined the extent to which culture and psychological control predict children's stress physiology. We examine cultural differences in maternal psychological control and its associations with children's cortisol. Chinese (N = 59) and American (N = 45) mother‐child dyads participated in the study. Mothers reported on psychological control. Children's cortisol was collected during a stressor and two indices of Area Under the Curve (AUC) were computed: AUCg which accounts for total output, and AUCi, which captures reactivity. Results indicate that Chinese mothers reported higher levels of psychological control and Chinese children had higher levels of AUCg than their American counterparts. Across both cultures, psychological control was significantly associated with increased cortisol levels as indexed by AUCg. There were no associations for AUCi. Finally, mediation analyses demonstrated that psychological control fully explained cultural differences in children's cortisol stress response as indexed by AUCg.