'I have cried a lot': a qualitative study on children experiencing severe parental illness.

BACKGROUND: A considerable body of research has explored implications of severe parental illness on children. However, less is known about what children and adolescents with a severely ill parent experience as the most challenging. AIMS: To describe what children with a severely ill parent experience as their most difficult challenge. METHODS: A qualitative descriptive design with a manifest content analysis was used on data from a cross-sectional, multicenter study on children of patients in five Norwegian Health trusts. Data consisted of written textual responds from 238 children (age 8-18) to one open-ended question in a self-report questionnaire. RESULTS: The overall theme concerning the children's most difficult challenge was named 'the drama of life unfoldment', reflecting the parental illness' impact on themselves, their relationships with others, and their life circumstances. The subthemes consisted of: Children's experiences of difficult thoughts and feelings; negatively impaired relationship with parents, friends and others; and challenging life events and obstacles in welfare. CONCLUSIONS: The most difficult challenge experienced by the children with a severely ill parent implies life unfoldment challenges and include negative personal and relational impact, challenging life events and obstacles in welfare.

Children with ill parents: extent and nature of caring activities.

RATIONALE: Previous studies have shown that children may take on higher extents of caring activities if their parents are affected by severe illness or disability, especially when their parents lack access to formal and informal care. AIMS AND OBJECTIVES: This study examined the extent and nature of caring activities done by patients' children; differences in caring activities between different types of parental illness; factors associated with caring activities. DESIGN: An explorative cross-sectional multicentre study. METHODS: Parents as patients in specialised healthcare services, and their children, were recruited from five health trusts in Norway. The sample included 246 children aged 8-17 years and their 238 parents with severe physical illness (neurological disease or cancer) (n = 135), mental illness (n = 75) or substance abuse (n = 28). MAIN OUTCOME MEASURE: Multidimensional Assessment of Caring Activities (MACA-YC18). RESULTS: A large number of children with ill parents are performing various caring activities. Increased caring activities among children due to their parent's illness were confirmed by their parents, especially with regard to personal care. We found no significant differences in the extent of caring activities between illness types, but there were some differences in the nature of these activities. Factors significantly associated with the extent and nature of caring activities were as follows: better social skills and higher external locus of control among the children; and poorer physical parental health. Parent's access to home-based services was limited. STUDY LIMITATIONS: In recruitment of participants for the study, a sampling bias may have occurred. CONCLUSION: To promote coping and to prevent inappropriate or extensive caring activities among children with ill parents, there is a need for increased access to flexible home-based services adapted to the type of parental illness.

Mental health promotion as perceived by Norwegian adolescents with somatically ill parents - an interpretative phenomenological analysis.

Objective: Having a somatically ill parent can influence adolescents' daily lives and mental health. This study aimed to explore the lived experiences of mental health promotion among adolescents with a somatically ill parent, based on a salutogenic orientation. Methods: Individual interviews with 11 adolescents (13-18 years of age) with a somatically ill parent were conducted. The data were analysed according to interpretative phenomenological analysis. Results: A superordinate theme, feeling at home in a house of mental health-promoting conversations, frames the participants' perceptions of a prominent mental health promotion experience, including decisive characteristics of the significant conversation partners and different important conversation contexts. The metaphor of feeling at home expresses that the participants ascribe the conversations taking place there as promoting mental health. The themes elucidate the superordinate theme: (a) significant conversation partners characterised by the three subthemes: (i) being available, (ii) being competent and (iii) being caring and (b) rooms reflecting conversation contexts containing four subthemes: (i) room of increased knowledge, (ii) room of disclosure, (iii) room for meeting points and (iv) room for breaks. Conclusion: Adolescents with a somatically ill parent perceived that conversations about important topics with significant others with special characteristics in distinct contexts promoted mental health.

Maternal psychological distress and parenting stress after gastrostomy placement in children.

OBJECTIVES: The aim of the study was to evaluate stress in mothers of children with feeding problems before and after gastrostomy placement, and to identify changes in child health and variables affecting maternal stress. METHODS: Psychological distress and parenting stress in 34 mothers of children referred for gastrostomy were assessed using general health questionnaire (GHQ) (overall psychological distress), impact of event scale (IES) (intrusive stress related to child's feeding problems), and parenting stress index (PSI) (stress related to parenting) before, 6, and 18 months after placement of a gastrostomy. Information of child health and long-term gastrostomy complications were recorded. A semistructured interview constructed for the present study explored maternal preoperative expectations and child's quality of life. RESULTS: Insertion of a gastrostomy did not significantly influence vomiting or the number of children with a low weight-for-height percentile. All of the children experienced peristomal complications. Despite this, mothers' overall psychological distress was significantly reduced after 6 and 18 months, and the majority of mothers (85%) reported that their preoperative expectations were fulfilled and that the child's quality of life was improved after gastrostomy placement. Maternal concerns for the child's feeding problems, measured as intrusive stress, had effect on maternal overall psychological distress. CONCLUSIONS: Despite frequent stomal complications the gastrostomy significantly reduced the mothers' psychological distress and improved the child's quality of life as reported by the mother.

Parenting stress and emotional wellbeing in mothers and fathers of preschool children.

AIMS: The aims of the study were to compare parenting stress and emotional wellbeing in mothers and fathers of preschool children, to look for predictors of different aspects of parenting stress in mothers and fathers, and to discriminate parenting stress from psychological distress and anxiety. METHODS: We studied 256 mothers and 204 fathers of children aged 1-7 years. The Swedish Parenthood Stress Questionnaire (SPSQ) assesses stress related to parenting. Emotional wellbeing was defined by the General Health Questionnaire-28 (GHQ-28) and the State Anxiety Inventory (STAI-X1) that measures psychological distress and anxiety, respectively. RESULTS: Fathers reported significantly more social isolation than mothers (P < 0.001). On all other parameters mothers, had higher scores, representing more stress and less wellbeing than fathers. Anxiety and psychological stress were strong predictors of parental stress in both mothers and fathers. Furthermore, maternal parental stress was predicted by birth of subsequent children and younger child age. Higher educational attainment predicted increased role restriction in fathers and more health problems in mothers. A principal component analysis (PCA) of the SPSQ, GHQ-28, and STAI-X1 showed that all endpoints of the analysis are positively correlated. CONCLUSIONS: Fathers reported significantly more social isolation, but less role restriction, incompetence and state anxiety than mothers. The SPSQ together with GHQ-28 and STAI-X1 allow a targeted screening aimed at contrasting parents who experience reduced emotional wellbeing with those who struggle with stress directly related to their parenting role.

Impaired motor performance in adolescents with esophageal atresia.

AIMS: The study prospectively assessed motor development from infancy to adolescence in patients with esophageal atresia (EA). METHODS: At one year of age motor performance was evaluated with the Psychomotor Developmental Index (PDI) of the Bayley Scales of Infant Development, Second Edition (BSID-II), and as adolescents reevaluated with Motor Assessment Battery for Children, Second Edition (MABC-2). Associations to clinical factors were assessed. RESULTS: 23 EA patients were followed from infancy to adolescence. The median total PDI score in infancy was 102 (56-118) and the corresponding mean z-score was -0.006 (SD 0.995) and not significantly different from the reference values (p = 0.48). The median total MABC-2 score in adolescence was 75 (32-93) and the corresponding mean z-score -0.43 (SD 0.998) which is significantly below normal (p = 0.03). Children with impaired motor function in adolescence underwent significantly more rethoracotomies than those with normal motor performance (p = 0.037); whereas the two groups did not differ with respect to other clinical characteristics. CONCLUSION: From infancy to adolescence the motor performance in the group of EA patients deteriorated from within normal range to significantly impaired compared to reference values. Interdisciplinary follow-up programs from infancy to adolescence with close monitoring for motor function is necessary to detect motor impairments.

Long-term parental psychological distress among parents of children with a malformation--a prospective longitudinal study.

We previously reported that prenatal diagnosis of malformations is associated with increased parental psychological distress after birth compared to distress in parents with postnatal diagnosis. We have now extended our earlier study to include a long-term follow-up of mothers and fathers 9 years after birth. Psychological responses were measured by General Health Questionnaire (GHQ-28), State Anxiety Inventory (STAI-X1), and Impact of Event Scale (IES) in 118 mothers and 100 fathers of 124 children with malformations 0-7 days (T1), 6 weeks (T2), 6 months (T3), and 9 years postpartum (T4). At T4 we observed no significant differences in psychological responses comparing parents with and without prenatal foreknowledge of their child's malformation. At T4 30.2% and 27.8% of the parents reported clinically important psychological distress and clinically important state anxiety, respectively. Intrusive stress decreased from T1 to T3, but increased significantly from T3 to T4. At T4 25.6% of the parents reported severe intrusive stress, with a higher proportion among mothers than fathers (32.8% vs. 17.2%, P = 0.029). In the multivariate analysis, unemployment predicted clinically important psychological distress at T4, whereas, clinically important state anxiety at T4 was predicted by low educational level. This study shows that prenatal diagnosis is associated with significantly increased psychological distress in the acute postnatal phase. However, there was no long-term increase in psychological distress among parents with prenatal foreknowledge of their child's malformation. The significantly increased intrusive stress at 9-year follow-up might reflect long-term challenges related to having a child with a malformation.

Mental health as perceived by Norwegian adolescents living with parental somatic illness: Living in an earthquake zone.

PURPOSE: Severe parental somatic illnesses can influence the entire family, including adolescents' everyday life, psychosocial functioning and health. Within salutogenesis, it is highlighted that stressor life events, such as parental somatic illness, might lead to a chain of events that can produce tension. There is a lack of in-depth understanding regarding how adolescents living in a situation with a severely somatically ill parent (SIP) perceive their own mental health. The aim of this study was therefore to explore the lived experience of Norwegian adolescents living with an SIP, and their perception of the parental illness' influence on their mental health. METHODS: Interpretative phenomenological analysis was used. In-depth interviews were conducted with 11 adolescents (aged 13-18 years) who had an SIP. Two adolescents with an SIP participated in study preparation and data analysis. RESULTS: Adolescents perceived parental somatic illness as a multifaceted influence on their mental health as it represented both personal and relational strain and growth. Their perceptions can be conceptualized by the super-ordinate theme "living in an earthquake zone", and by two themes, "inner shakes-but not falling apart" and "relational aftershocks-gains and losses". CONCLUSION: For adolescents, parental somatic illness means personal and relational strain and growth.

Mental health in infants with esophageal atresia.

Chronic somatic illness in infancy may challenge the development of mental health and impinge the infant's capability to form close interpersonal relationships. Esophageal atresia (EA) is a congenital anomaly requiring neonatal surgery, medical aftertreatment, and extended hospitalization. The aim of the study was to assess mental health and to find prognostic factors for mental health among infants with EA. Thirty-nine infants treated consecutively during 2000 to 2003 and their mothers were included. Infant mental health was assessed by Diagnostic Classification: 0-3 (Zero to Three, 1994). Medical and environmental data were collected from medical records and semistructured interview with the mothers. Child development was assessed with the Bayley scales, second edition (N. Bayley, 1993). Maternal psychological distress, anxiety, and child temperament were assessed by self-report questionnaires: the General Health Questionnaire, 30-item version (D. Goldberg & P. Williams, 1988); the State Trait Anxiety Inventory (C.D. Spielberger, R. Gorsuch, & R. Lushene, 1970); and the Infant Behaviour Questionnaire (M.K. Rothbart, 1981). Thirty-one percent of the infants with EA showed mental health disorders by 1 year of age. Prognostic factors predicting mental health were posttraumatic symptoms reported by mother, more than one operation, mechanical ventilation beyond 1 day, and moderate/severe chronic family strain. Relational trauma, vulnerable attachment, and impaired self-development are highlighted as possible pathways for psychopathology. Children with EA are vulnerable to mental health disorders, and this study may help clinicians to identify children at risk.

Mental health and psychosocial functioning in adolescents with esophageal atresia.

PURPOSE: We examined mental health and psychosocial functioning in adolescents with esophageal atresia (EA) and searched for predictors of impaired outcome. METHODS: The study group comprised 21 adolescents with EA and 1 or both parents. A comparison group comprised 36 adolescents from the general population. Mental health, self-esteem, psychosocial functioning, and parental/family functioning were assessed by standardized questionnaires and semistructured interviews. Physical health was assessed by growth and clinical symptoms. RESULTS: Mental health and psychosocial functioning did not differ from the comparison group. Seven of 21 EA adolescents had special education. Dilatations of esophagus, birth weight, well-being, and maternal psychological distress were prognostic factors predicting mental health. Height, birth weight, well-being, dissociative symptoms, and family strain were prognostic factors predicting psychosocial functioning. CONCLUSION: Adolescents with EA adjusted well, and mental health and psychosocial functioning did not differ from controls. Dilatations of esophagus and birth weight were significant predictors of mental health and psychosocial functioning.

Does esophageal atresia influence the mother-infant interaction?

PURPOSE: Chronic illness in infancy may influence parent-infant interaction. We assessed quality of mother-infant interaction in children with esophageal atresia (EA) and searched for predictors for impaired interaction. METHODS: The study group comprised 37 one-year-old infants with EA born in 1999 to 2002 and their mothers. A comparison group comprised 10 infants with urologic problems without feeding difficulties and their mothers. Parent Child Early Relational Assessment was used to assess mother-child interaction in feeding and play situation. General Health Questionnaire and State Trait Anxiety Inventory were used to assess maternal psychological distress and anxiety. RESULTS: Many aspects of mother-EA infant interaction showed strength. However, mothers of EA children were compared to control-mothers significantly influenced in their ability to interact and the EA-mothers' "positive affective involvement, sensitivity, and responsiveness" during feeding was in range of concern. Small but significant effect of the mother's feeling of incompetence on their interaction was found. CONCLUSION: Mothers' attitude during feeding was negatively influenced in interaction between mother and infant with EA. The results suggest possibility for improvement in mother infant interaction by enhancing mothers' welfare when caring for infants with EA in medical services.

Assessment of early mother-child relation in infants with oesophageal atresia.

Fifteen one-year old infants with oesophageal atresia and their parents were used to demonstrate how the Parent-Child Early Relational Assessment (PCERA) can be used to explore the mother-child interaction in a clinical sample of children. The infants and their mothers were videotaped for 5-min episodes during feeding and free play, and the quality of the mother-infant interactions was assessed by PCERA. The results showed areas of strength regarding most of the maternal, infant and dyadic components. There was concern about maternal positive physical contact, maternal quality of verbalizations to or about the child, maternal social initiative, infant's communicative competence and infant's visual contact with mother. This concern of social proximity between infants and their mothers was most prominent in the feeding situation. The present study indicates that oesophageal atresia in infants may constitute stressors impinging on the parent-infant relationship. PCERA was found to be an adequate assessment tool with acceptable reliability to evaluate the mother-infant interaction.

[Parents of children with esophageal atresia--important source of knowledge]. / Foreldre til barn med oesophagusatresi--viktig kilde til kunnskap.

BACKGROUND: Follow-up studies on children with oesophageal atresia have shown that they often have eating and respiratory problems in early childhood. Psychosocial follow-up studies are scarce. In the design of a comprehensive biopsychosocial follow-up study of children and adolescents with oesophageal atresia, we wanted to include the knowledge of parents regarding the course of the disease. MATERIAL AND METHODS: We asked 29 parents participating in a meeting of members of the Norwegian support group for oesophageal atresia to complete a questionnaire about the somatic and psychosocial functioning of their child. Parental satisfaction with the health services responsible for their child was also assessed. RESULTS: Parents of 25 children (86%) with median age 4 years (8 months-16 years) responded. The main problems reported were related to respiratory infections (12/25), chronic cough (17/25), wheezing (19/25), swallowing difficulties (23/25), and psychosocial problems related to meals (11/23). INTERPRETATION: Although selection bias may have influenced the results, the parents reported enduring respiratory, feeding and psychosocial problems beyond their child's early childhood.