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1.  A multi-disciplinary education process related to the discharging of children from hospital when the child has been diagnosed with type 1 diabetes - a qualitative study 
BMC Pediatrics  2010;10:36.
Background
Worldwide, insulin-dependent type 1 diabetes is one of the most frequently diagnosed long-term endocrine disorders found in children and the incidences of this diseased is still increasing. In Sweden the routines are, according to national guidelines, when the child is diagnosed with type 1 diabetes, the child and its family remains at the hospital for about two weeks. There is limited knowledge about how a diabetes team handles a child and its family from admission to discharge, therefore the purpose of this study was to seek a deeper understanding of how the diabetes team's parent/child education process works, from admission to discharge, among families with a child newly diagnosed with type 1 diabetes.
Methods
Qualitative data collection was used. Four focus-group interviews, with a sample of three diabetes teams from different paediatric hospitals in the south western part of Sweden, were conducted and the data recorded on tape and then analysed using qualitative content analysis.
Results
The results indicate that achieving a status of self-care on the part of the patient is the goal of the diabetes education programme. Part of the programme is aimed at guiding the child and its parents towards self-help through the means of providing them with knowledge of the disease and its treatment to enable the whole family to understand the need for cooperation in the process. To do this requires an understanding, by the diabetes team, of the individualities of the family in order to gain an overall picture.
Conclusion
The results of this study show that the diabetes education programme is specifically designed for each family using the internationally recommended clinical practice guidelines with its specific aims and objectives. Achieving the families' willingness to assist in the self-care of the child care is the goal of the parent education process. To achieve this, the paediatric diabetes specialist nurse and the diabetes specialist paediatrician immediately and deliberately start the process of educating the family using a programme designed to give them the necessary knowledge and skills they will need to manage their child's type 1 diabetes at home.
doi:10.1186/1471-2431-10-36
PMCID: PMC2889941  PMID: 20507611
2.  Perceptions of parenting children with type 1 diabetes diagnosed in early childhood 
Introduction
To explore perceptions of psychosocial adaptations in parenting young children with type 1 diabetes (T1DM) from diagnosis through childhood.
Method
Fourteen parents of eleven T1DM children diagnosed at ≤5 years participated in semi-structured interviews. Data were analyzed using content analysis.
Results
Significant themes were: Diagnostic Experiences: Frustrations, fears and doubts: Parents described inadequate diagnostic experiences with pediatricians where concerns were minimized and sometimes delayed diagnosis. Although hospitalization occurred abruptly, communication with specialists was more satisfactory. Adapting to Diabetes: Parents described isolation in caring for their child’s T1DM. Family and friends had minimal understanding of T1DM care. Support groups lessened mothers’ isolation, but fathers were less positive about this experience. Parental adaptation was more effective when responsibility for diabetes decision-making was shared. All parents reported never mastering diabetes management. Negotiating Developmental Transitions: Normative childhood events were stressful requiring that parents balance concerns to foster child participation.
Conclusions
Pediatric providers can improve diagnostic and treatment experiences for parents of T1DM children by recognizing feelings of isolation and lack of mastery, providing attentive communication, encouraging parental teamwork, and offering ongoing anticipatory guidance.
doi:10.1016/j.pedhc.2009.09.003
PMCID: PMC3053084  PMID: 21320680
parenting; type 1 diabetes; teamwork; qualitative
3.  Health services experiences of parents of recently diagnosed visually impaired children 
Aim: To investigate the health service experiences and needs of parents in the period around diagnosis of ophthalmic disorders in their children.
Methods: Parents of children newly diagnosed with visual impairment and/or ophthalmic disorders at a tertiary level hospital in London participated in a questionnaire survey, using standard instruments, followed by in-depth individual interviews, to elicit their views about the processes of care, their overall level of satisfaction, and their unmet needs.
Results: 67% (147) of eligible families (135 mothers, 76 fathers) participated. Overall satisfaction with care was high, being greater among parents of children with milder visual loss or isolated ophthalmic disorders than those with more severe visual loss or multiple impairments. Nevertheless, parents’ reported greatest need was the provision of general information, including about their child’s ophthalmic disorder and educational and social services and support. Mothers reported greater information needs than fathers, as did white parents compared to those from ethnic minorities. White parents also regarded the processes of care to be less comprehensive and coordinated, as well as less enabling, than did parents from ethnic minorities.
Conclusions: Although parents reported high overall satisfaction with services, improving the medium, content, and scope of general information provided by professionals to parents of visually impaired children emerges as a priority. Equitable planning and provision of health services for families of children with visual impairment needs to take into account that informational and other needs vary by whether the parent is the primary carer or not and their ethnicity, as well as by the severity and complexity of their child’s visual loss.
doi:10.1136/bjo.2004.051409
PMCID: PMC1772503  PMID: 15665355
health services research; visual impairment; children; disability; families
4.  Giving offspring a healthy start: parents' experiences of health promotion and lifestyle change during pregnancy and early parenthood 
BMC Public Health  2011;11:936.
Background
There are good opportunities in Sweden for health promotion targeting expectant parents and parents of young children, as almost all are reached by antenatal and child health care. In 2005, a multisectoral child health promotion programme (the Salut Programme) was launched to further strengthen such efforts.
Methods
Between June and December 2010 twenty-four in-depth interviews were conducted separately with first-time mothers and fathers when their child had reached 18 months of age. The aim was to explore their experiences of health promotion and lifestyle change during pregnancy and early parenthood. Qualitative manifest and latent content analysis was applied.
Results
Parents reported undertaking lifestyle changes to secure the health of the fetus during pregnancy, and in early parenthood to create a health-promoting environment for the child. Both women and men portrayed themselves as highly receptive to health messages regarding the effect of their lifestyle on fetal health, and they frequently mentioned risks related to tobacco and alcohol, as well as toxins and infectious agents in specific foods. However, health promotion strategies in pregnancy and early parenthood did not seem to influence parents to make lifestyle change primarily to promote their own health; a healthy lifestyle was simply perceived as 'common knowledge'. Although trust in health care was generally high, both women and men described some resistance to what they saw as preaching, or very directive counselling about healthy living and the lack of a holistic approach from health care providers. They also reported insufficient engagement with fathers in antenatal care and child health care.
Conclusion
Perceptions about risks to the offspring's health appear to be the primary driving force for lifestyle change during pregnancy and early parenthood. However, as parents' motivation to prioritise their own health per se seems to be low during this period, future health promoting programmes need to take this into account. A more gender equal provision of health promotion to parents might increase men's involvement in lifestyle change. Furthermore, parents' ranking of major lifestyle risks to the fetus may not sufficiently reflect those that constitute greatest public health concern, an area for further study.
doi:10.1186/1471-2458-11-936
PMCID: PMC3282831  PMID: 22171644
5.  Immigrant Children with Autism Spectrum Disorder: The Relationship between the Perspective of the Professionals and the Parents’ Point of View 
Background:
The purpose of this study was to compare a medical diagnosis of autism spectrum disorder (ASD) with the perceptions of immigrant parents regarding their child’s difficulties.
Methods:
Semistructured interviews were conducted with parents. The children were assessed using the ADOS, and a multiaxial diagnosis was reached using the DSM-IV.
Results:
The majority of parents recognized symptoms in their child that were related to autism. Less often, however, parents believed their children had a developmental delay or communication problem rather than an ASD. There were also parents who failed to see any problem at all in their child although the child was, nonetheless, diagnosed as having an ASD.
Conclusions:
The failure of immigrant mothers to acknowledge a diagnosis of ASD in their younger children may represent an attempt to preserve hope for their child’s future. Mothers of older children may not, however, agree with the psychiatric diagnosis. Community services need to balance the need to convey accurate medical information with the need to protect parents’ investment in their children. This may be particularly true for immigrant parents who are living outside their cultural framework.
PMCID: PMC3647629  PMID: 23667359
autism; diagnosis; parents; immigrant; perceptions; qualitative; autisme; diagnostic; parents; immigrants; perception; qualitatif
6.  Attributions and Attitudes of Mothers and Fathers in Sweden 
Parenting, science and practice  2011;11(2-3):177-189.
SYNOPSIS
Objective
The present study examined mean level similarities and differences as well as correlations between mothers’ and fathers’ attributions regarding successes and failures in caregiving situations and progressive versus authoritarian attitudes.
Design
Interviews were conducted with both mothers and fathers in 77 Swedish families.
Results
Fathers reported higher adult-controlled failure and child-controlled failure attributions than did mothers; these differences remained significant after controlling for parents’ age, education, and possible social desirability bias. Significant positive correlations were found for mothers’ and fathers’ progressive attitudes, authoritarian attitudes, and modernity of attitudes after controlling for parents’ age, education, and possible social desirability bias.
Conclusions
We conclude that in Sweden fathers are more likely to attribute failures in caregiving situations both to themselves and to children than are mothers and that there is moderate concordance between fathers and mothers within the same family in progressive and authoritarian parenting attitudes.
doi:10.1080/15295192.2011.585565
PMCID: PMC3173942  PMID: 21927589
7.  Pilot educational program to enhance empowering patient education of school-age children with diabetes 
Background
Nurses have a crucial role in patient education of children with type 1 diabetes, but they often exhibit lack of knowledge of the patient education process. This study aimed to describe an educational program to enhance empowering patient education process for the blood glucose monitoring education of school-age children and nurses’ perceptions of using empowering techniques.
Methods
An empowering patient education process for the diabetes education of school-age children was developed. The researcher collected nurse’s perceptions of managing the educational program by semi-structured interviews. Ten nurses carried out the diabetes education, and 8 of them participated in the interview. Three nurses implemented the diabetes education twice and were interviewed twice. The data consisted of 11 descriptions of the blood glucose monitoring education. The interviewer analyzed the data deductively and inductively by content analysis.
Results
Nurses described successful managing of the empowering patient education process. The need assessment consisted of using multiple methods and clarifying the capabilities and challenges of children and their parents. Planning manifested itself in adequate preparation and multiple objectives stated together with the family. Implementation comprised the relevant content, and the use of suitable teaching materials and methods. Evaluation was performed with various methods and documented accurately. Nurses also faced some challenges related to management and leadership, ambivalence with traditional and empowering patient education, and families’ overall situation.
Conclusion
An example of developing evidence-based patient education program is presented, but besides education other factors supporting changes in work practices should be considered in further development.
doi:10.1186/2251-6581-12-16
PMCID: PMC3654888  PMID: 23641969
Patient education; Empowerment; Children; Diabetes
8.  The relationship between parental perceptions of diabetes and glycaemic control 
Archives of Disease in Childhood  2005;91(6):487-490.
Aim
To measure the relationship between perceived child competence, parental self‐efficacy, and children's glycaemic control.
Methods
Cross‐sectional outpatient based questionnaire survey of 78 parents of children aged 6–12 years with insulin dependent diabetes mellitus, diagnosed for at least one year. Parental perceptions of their child's competence were assessed, together with parental perceptions of their own self‐efficacy in managing their child's diabetes. Glycaemic control was assessed by the average annual HbA1C level.
Results
The response rate was 64.5% (51 parents); 82% were mothers and the socioeconomic class and ethnicity spread was representative of the general population. The mean age of the children was 10 years and duration of diabetes 4.4 years. Poorer glycaemic control was associated with higher perceived child competence, together with lower perceived age of responsibility, lower perceived seriousness, and less frequent blood tests. Higher parental self‐efficacy and higher perceived child competence predicted a higher level of normalisation, as did lower perceived seriousness, a lower perceived parental responsibility for management, and a less protective style of parenting.
Conclusion
Parents' perceptions of their children's diabetes are significantly related to glycaemic control; however, those who appear more competent at managing diabetes may overestimate their child's capabilities, leading to poorer glycaemic control.
doi:10.1136/adc.2004.061416
PMCID: PMC2082788  PMID: 16246854
chronic disease; diabetes mellitus; parents; self efficacy; type 1 diabetes
9.  Mothers', Fathers', and Children's Perceptions of Parental Diabetes Responsibility in Adolescence: Examining the Roles of Age, Pubertal Status, and Efficacy* 
Journal of Pediatric Psychology  2008;34(2):195-204.
Objectives To examine how perceptions of parental responsibility for diabetes management are associated with age, pubertal status, adolescents’ self-efficacy, and parental perceptions of adolescents’ efficacy, and if parental responsibility is associated with better metabolic control as a function of adolescents’ self-efficacy and parental perceptions of adolescents’ efficacy. Methods Questionnaires assessing parental responsibility, pubertal status, adolescents’ self-efficacy, and parental perceptions of adolescents’ efficacy were given to 185 adolescents with type 1 diabetes, 185 mothers, and 145 fathers. Results Greater parental responsibility was negatively associated with age, perceptions of pubertal status, and efficacy for all reporters. Interactions between parental responsibility and parental perceptions of adolescents’ efficacy indicated that parental responsibility was associated with better metabolic control when adolescents were perceived to have lower efficacy. Conclusions Adolescents’ and parents’ perceptions of parental responsibility are related to multiple factors. Metabolic control is best when high parental responsibility is maintained among adolescents with lower efficacy.
doi:10.1093/jpepsy/jsn073
PMCID: PMC2722124  PMID: 18632787
adolescents; age; diabetes; efficacy; fathers; mothers; puberty
10.  Reasons for Staying as a Participant in the Environmental Determinants of Diabetes in the Young (TEDDY) Longitudinal Study 
Journal of clinical trials  2012;2(2):1000114.
Objective
To assess parents’ opinions about their participation in the longitudinal, multicenter study - The Environmental Determinants of Diabetes in the Young (TEDDY) consortium.
Methods
A survey was given to parents who had been in the study for ≥ 1 year. Parents rated the importance of different reasons for staying in TEDDY and how well different study components were working. Parents were also asked if they had suggestions for making TEDDY better and if they ever had thought of leaving TEDDY and if so, why.
Results
Out of the 3336 eligible families, 2000 completed the survey (59.1%); most (77.6%) were mothers. Survey completion was more common in European than US TEDDY sites and was associated with greater maternal education, more accurate perceptions about their child’s risk of type 1 diabetes, longer participation in TEDDY and excellent attendance at TEDDY visits. “Having someone watching the child for development of T1DM” was most important reason given for staying in the study; other important reasons included “Helping science discover causes of diabetes” and “Getting child’s antibody results”. Most parents were very satisfied with the different components of TEDDY and had not thought of leaving the study. A minority (24%) of parents acknowledged some thoughts of leaving TEDDY and cited the blood draws, being too busy/not having enough time, the demanding protocol, and food diaries as their reasons for considering leaving.
Conclusions
The study highlights factors important for successful implementation of demanding, longitudinal protocols. Friendly, devoted, skilled and knowledgeable staff with continuity makes the family comfortable. Keeping parents involved and informed on study progress is essential as is making procedures as smooth and painless as possible. Although the study is international the survey results were convergent across countries suggesting that the results have relevance to other similar studies to retain study participants.
doi:10.4172/2167-0870.1000114
PMCID: PMC3723141  PMID: 23894727
Natural history; Diabetes mellitus; Type 1 Diabetes; Clinical observational study; Participation
11.  Parental involvement in paediatric cancer treatment decisions 
European Journal of Cancer Care  2010;19(5):621-630.
This study investigated parents' information needs and involvement in decision-making processes affecting the care of children diagnosed with cancer. Interviews and questionnaires were used to assess parental satisfaction in 50 mothers and 16 fathers responsible for 58 children in an English Paediatric Oncology Unit. Parents reported that doctors contributed almost twice as much to the decision-making process as they did, but parental satisfaction was positively correlated with the amount of information provided when giving informed consent. Satisfaction about their involvement in this process relied heavily upon the level of support received from others. Parents consenting to their child's involvement in non-randomised trials perceived themselves to be under greater pressure from others during the decision-making process while those whose children were further along the treatment trajectory were more uncertain about decisions previously made. Findings indicate that the accessibility, support, information and degree of control afforded to parents by healthcare professionals impacts upon their satisfaction with both the decision-making process and their confidence in the decisions thus made. Information and support tailored to parents' specific needs may therefore enhance satisfaction with clinical decision making and reassure parents about decisions made in the long-term interest of their child's health.
doi:10.1111/j.1365-2354.2009.01116.x
PMCID: PMC3178788  PMID: 19807776
parental satisfaction; decision making; communication; paediatric oncology
12.  The impact of blood glucose and HbA1c goals on glycaemic control in children and adolescents with Type 1 diabetes 
Aims
To evaluate parents’ goals and parents’ perceptions of physicians’ goals for blood glucose and HbA1c in children and adolescents with type 1 diabetes.
Methods
In a cross-sectional observational assessment, parents (80% mothers) of 153 children/adolescents (56% female), aged 12.9 ± 2.3 years (range 8–16 years) with Type 1 diabetes for 6.3 ± 3.5 years, completed surveys regarding their goals and their perceptions of physicians’ goals for their child’s blood glucose and HbA1c levels.
Results
Children/adolescents had a mean HbA1c of 69 ± 16 mmol/mol (8.4 ± 1.4%) and blood glucose levels checked 3.8 ± 1.2 times/day; 23% received pump therapy. Almost half of parents reported a blood glucose goal of 130 (80–180) mg/dl [7.2 (4.4–10) mmol/l]; 75% of parents reported a HbA1c goal of 42–64 mmol/mol (6–8%). The HbA1c level was significantly lower when parents reported HbA1c goals ≤ 64 mmol/mol (≤ 8%) vs. > 64 mmol/mol (> 8%) [67 ± 14 mmol/mol (8.3 ± 1.2%) vs. 76 ± 20 mmol/mol (9.1 ± 1.8%), respectively, P = 0.02]. Parents’ blood glucose and HbA1c goals were tightly linked with parents’ perceptions of physicians’ blood glucose and HbA1c goals (69% concordant, P < 0.0001; 88% concordant, P < 0.0001, respectively).
Conclusions
There was a significant association between lower parent HbA1c goals and lower child/adolescent HbA1c. Further, parents appear to set glycaemic goals based upon their perceptions of physician goals. Future studies should assess the relationship between parents’ perceptions of health-care providers’ goals and health-care providers’ actual goals and the impact of unified family/provider goal-setting on glycaemic control.
doi:10.1111/dme.12083
PMCID: PMC3614346  PMID: 23190135
13.  Implications of Resolving the Diagnosis of PKU for Parents and Children 
Journal of Pediatric Psychology  2008;33(8):855-866.
Objective To examine resolution of the diagnosis among parents of children with phenylketonuria (PKU) as a mechanism of adjustment for parents and children. Methods Reaction to diagnosis interviews were conducted with 52 mothers and 47 fathers of 55 children with PKU aged 2–12 years. The parents also completed questionnaires assessing their personal adjustment (stress symptoms), their child's adjustment (behavior problems), and coping variables (personal hopefulness and coping strategies). Results Most mothers (69%) and fathers (77%) were resolved to their child's diagnosis. Lower levels of parent stress were explained by higher personal hopefulness (14% of the variance for mothers and 21% for fathers) and resolution of the diagnosis (15% of the variance for mothers and 6% for fathers) after taking account of demographic variables and severity of the child's PKU. Parent resolution, however, did not contribute independently to the variance explained in child behavior problems after taking account of coping variables and severity of PKU. Conclusions Resolution of the diagnosis of PKU is a strong indicator of parent adjustment, and assessment of parent reactions should be considered an integral component of clinical care. Further research is warranted in relation to the implications of parent resolution for the child's response to PKU through different development stages and the effectiveness of interventions in aiding parent resolution.
doi:10.1093/jpepsy/jsn020
PMCID: PMC2493509  PMID: 18339641
adjustment; child; coping; PKU; parent; resolution of the diagnosis
14.  Individual Adjustment, Parental Functioning, and Perceived Social Support in Hispanic and Non-Hispanic White Mothers and Fathers of Children With Spina Bifida 
Journal of Pediatric Psychology  2011;37(7):769-778.
Objective To compare Hispanic and non-Hispanic White mothers and fathers of children with spina bifida on measures of individual adjustment, parental functioning, and perceived social support. Method Mothers (29 Hispanic, 79 non-Hispanic White) and fathers (26 Hispanic, 68 non-Hispanic White) completed questionnaires regarding psychological distress, parental functioning, and perceived social support. Results Mothers and fathers reported similar individual adjustment across groups. Hispanic mothers reported lower levels of parenting satisfaction, competence as a parent, and social support, as well as higher perceptions of child vulnerability. Hispanic fathers reported lower levels of parenting satisfaction and higher perceptions of child vulnerability. Effect sizes were reduced when socioeconomic status was included as a covariate. Conclusions Hispanic parents, particularly mothers, are at risk for lower feelings of satisfaction and competence as parents. More research is needed to understand cultural factors related to these differences.
doi:10.1093/jpepsy/jsr083
PMCID: PMC3404450  PMID: 21990583
Hispanic; parental adjustment; parenting stress; social support; spina bifida
15.  Corporal Punishment of Children in Nine Countries as a Function of Child Gender and Parent Gender 
Background. The purpose of this paper is to contribute to a global perspective on corporal punishment by examining differences between mothers' and fathers' use of corporal punishment with daughters and sons in nine countries. Methods. Interviews were conducted with 1398 mothers, 1146 fathers, and 1417 children (age range = 7 to 10 years) in China, Colombia, Italy, Jordan, Kenya, the Philippines, Sweden, Thailand, and the United States. Results. Across the entire sample, 54% of girls and 58% of boys had experienced mild corporal punishment, and 13% of girls and 14% of boys had experienced severe corporal punishment by their parents or someone in their household in the last month. Seventeen percent of parents believed that the use of corporal punishment was necessary to rear the target child. Overall, boys were more frequently punished corporally than were girls, and mothers used corporal punishment more frequently than did fathers. There were significant differences across countries, with reports of corporal punishment use lowest in Sweden and highest in Kenya. Conclusion. This work establishes that the use of corporal punishment is widespread, and efforts to prevent corporal punishment from escalating into physical abuse should be commensurately widespread.
doi:10.1155/2010/672780
PMCID: PMC2952896  PMID: 20976255
16.  Association Between Maternal Diabetes in Utero and Age at Offspring's Diagnosis of Type 2 Diabetes  
Diabetes Care  2008;31(11):2126-2130.
OBJECTIVE—The purpose of this study was to examine age of diabetes diagnosis in youth who have a parent with diabetes by diabetes type and whether the parent's diabetes was diagnosed before or after the youth's birth.
RESEARCH DESIGN AND METHODS—The cohort comprised SEARCH for Diabetes in Youth Study participants (diabetes diagnosis 2001–2005) with a diabetic parent. SEARCH is a multicenter survey of youth with diabetes diagnosed before age 20 years.
RESULTS—Youth with type 2 diabetes were more likely to have a parent with either type 1 or type 2 diabetes (mother 39.3%; father 21.2%) than youth with type 1 diabetes (5.3 and 6.7%, respectively, P < 0.001 for each). Type 2 diabetes was diagnosed 1.68 years earlier among those exposed to diabetes in utero (n = 174) than among those whose mothers’ diabetes was diagnosed later (P = 0.018, controlled for maternal diagnosis age, paternal diabetes, sex, and race/ethnicity). Age at diagnosis of type 1 diabetes for 269 youth with and without in utero exposure did not differ significantly (difference 0.96 year, P = 0.403 after adjustment). Controlled for the father's age of diagnosis, father's diabetes before the child's birth was not associated with age at diagnosis (P = 0.078 for type 1 diabetes; P = 0.140 for type 2 diabetes).
CONCLUSIONS—Type 2 diabetes was diagnosed at younger ages among those exposed to hyperglycemia in utero. Among youth with type 1 diabetes, the effect of the intrauterine exposure was not significant when controlled for mother's age of diagnosis. This study helps explain why other studies have found higher age-specific rates of type 2 diabetes among offspring of women with diabetes.
doi:10.2337/dc08-0769
PMCID: PMC2571061  PMID: 18694977
17.  Absorbing Information about a Child's Incurable Cancer 
Oncology  2010;78(3-4):259-266.
Purpose
To assess parents’ ability to absorb information that their child's cancer was incurable and to identify factors associated with parents’ ability to absorb this information. Patients and Methods: An anonymous mail-in questionnaire study was performed as a population-based investigation in Sweden between August and October of 2001. 449 parents who lost a child to cancer 4–9 years earlier (response rate 80%) completed the survey. 191 (43%) of the bereaved parents were fathers and 251 (56%) were mothers.
Results
Sixty percent of parents (n = 258) reported that they were able to absorb the information that their child's illness was incurable. Parents were better able to absorb this information when the information was given in an appropriate manner (RR 1.6; CI 1.3–2.0), when they shared their problems with others during the child's illness course (RR 1.4; CI 1.1–1.8) and when they had no history of depression (RR 1.3; CI 1.0–1.8). Parents who reported that they were able to absorb the information were more likely to have expressed their farewells to the child in their desired manner (RR 1.3; CI 1.0–1.5).
Conclusions
Parents who received information that their child's illness was incurable in an appropriate manner are more likely to absorb that information. Whether or not parents are able to absorb the information that their child's cancer is incurable has implications in terms of preparation for the child's impending death.
doi:10.1159/000315732
PMCID: PMC2914400  PMID: 20523086
Prognostic information; Childhood cancer; Communication
18.  What Mom and Dad Don’t Know CAN Hurt You: Adolescent Disclosure to and Secrecy From Parents About Type 1 Diabetes 
Journal of Pediatric Psychology  2012;38(2):141-150.
Objective To examine how adolescent disclosure to and secrecy from parents were related to parental knowledge of diabetes management behaviors, and to adolescent adherence, metabolic control, and depressive symptoms. Methods A total of 183 adolescents with type 1 diabetes reported on disclosure to and secrecy from parents regarding diabetes management, adherence behaviors, depressive symptoms, and perceptions of parental knowledge. Mothers and fathers reported on their own knowledge. Results Adolescent disclosure was associated with all reporters’ perceptions of knowledge. Secrecy from both parents moderated the relationship between disclosure and adherence, and secrecy from fathers moderated the relationship between disclosure to fathers and glycosylated hemoglobin level. In all cases, disclosure was associated with better diabetes management only when secrecy was low. Finally, higher secrecy related to greater adolescent depressive symptoms. Conclusions Disclosure to parents appears to be an important component of how parents get their knowledge about adolescents’ diabetes management, but may be most beneficial for diabetes management when it occurs together with low secrecy.
doi:10.1093/jpepsy/jss102
PMCID: PMC3579162  PMID: 23009958
adherence; disclosure; parental knowledge; parental monitoring; secrecy; type 1 diabetes
19.  A qualitative study exploring the experiences of parents of children admitted to seven Dutch pediatric intensive care units 
Intensive Care Medicine  2010;37(2):319-325.
Purpose
To explore parents' experiences during the admission of their children to a pediatric intensive care unit (PICU).
Method
Qualitative method using in-depth interviews. Thematic analysis was applied to capture parents’ experiences. Thirty-nine mothers and 25 fathers of 41 children admitted to seven of the eight PICUs in university medical centers in The Netherlands were interviewed.
Results
Parents were interviewed within 1 month after their child’s discharge from a PICU. Thematic analysis identified 1,514 quotations that were coded into 63 subthemes. The subthemes were categorized into six major themes: attitude of the professionals; coordination of care; emotional intensity; information management; environmental factors; parent participation. Most themes had an overarching relationship representing the array of experiences encountered by parents when their child was staying in a PICU. The theme of emotional intensity was in particular associated with all the other themes.
Conclusions
The findings provided a range of themes and subthemes describing the complexity of the parental experiences of a PICU admission. The subthemes present a systematic and thematic basis for the development of a quantitative instrument to measure parental experiences and satisfaction with care. The findings of this study have important clinical implications related to the deeper understanding of parental experiences and improving family-centered care.
Electronic supplementary material
The online version of this article (doi:10.1007/s00134-010-2074-3) contains supplementary material, which is available to authorized users.
doi:10.1007/s00134-010-2074-3
PMCID: PMC3028069  PMID: 21063674
Critical care; Pediatric; Experiences; Needs; Stress; Family-centered care; Qualitative research
20.  Attributions and Attitudes of Mothers and Fathers in the Philippines 
Parenting, science and practice  2011;11(2-3):163-176.
SYNOPSIS
Objective.
This paper investigates the mean level and within-family similarities and differences in Filipino mothers’ and fathers’ attributions about success and failure in caregiving situations, and their progressive and authoritarian parenting attitudes.
Design.
Both mothers and fathers in 95 families in metropolitan Manila completed interviews.
Results.
Controlling for parents’ age, education, and possible social desirability bias, there was a significant gender difference in modernity of attitudes, with mothers exhibiting higher levels of modernity than fathers. There was a strong correlation in mothers’ and fathers’ authoritarian attitudes and moderate correlations in modernity of attitudes. There were neither parent gender effects nor concordance in the attributions of mothers and fathers.
Conclusions.
Cultural explanations are presented to account for the findings, specifically the sociocultural values that foster traditional attitudes favoring parental authority and child obedience, and the differences in gender and family roles of Filipino mothers and fathers.
doi:10.1080/15295192.2011.585564
PMCID: PMC3150789  PMID: 21826132
21.  Harsh Parenting in Relation to Child Emotion Regulation and Aggression 
This study presents a model of harsh parenting that has an indirect effect, as well as a direct effect, on child aggression in the school environment through the mediating process of child emotion regulation. Tested on a sample of 325 Chinese children and their parents, the model showed adequate goodness of fit. Also investigated were interaction effects between parents’ and children’s gender. Mothers’ harsh parenting affected child emotion regulation more strongly than fathers’, whereas harsh parenting emanating from fathers had a stronger effect on child aggression. Fathers’ harsh parenting also affected sons more than daughters, whereas there was no gender differential effect with mothers’ harsh parenting. These results are discussed with an emphasis on negative emotionality as a potentially common cause of family perturbations, including parenting and child adjustment problems.
doi:10.1037/0893-3200.17.4.598
PMCID: PMC2754179  PMID: 14640808
22.  Stress among Fathers of Young Children with Type 1 Diabetes 
Although fathers’ stress has been shown to have important implications for children’s health and well-being, few studies of children with type 1 diabetes have considered paternal parenting stress. The current study contributes to the literature by exploring correlates of fathers’ pediatric parenting stress in a sample of young children with type 1 diabetes. Forty-three fathers of children 2–6 years old with type 1 diabetes completed self-report questionnaires examining pediatric parenting stress, child behavior, participation in diabetes management tasks, and parental psychological resources. Results of multiple regression show that fathers’ pediatric parenting stress is positively associated with state anxiety and mother-reported difficult child behavior. These findings suggest that fathers may experience parenting stress differently than mothers, and that their experiences may have implications not only for their own level of anxiety, but also for their children’s behavior.
doi:10.1037/a0018191
PMCID: PMC2853761  PMID: 20047355
fathers; parenting stress; type 1 diabetes; early childhood
23.  Children’s Conscience During Toddler and Preschool Years, Moral Self, and a Competent, Adaptive Developmental Trajectory 
Developmental psychology  2010;46(5):1320-1332.
We investigated whether children’s robust conscience, formed during early family socialization, promotes their future adaptive and competent functioning in expanded ecologies. We assessed two dimensions of conscience in young children (N = 100) at 25, 38, and 52 months in scripted laboratory contexts: internalization of their mothers’ and fathers’ rules, observed when the child was alone, and empathic concern toward each parent, observed in simulated distress paradigms. We also assessed the child’s self-perception on moral dimensions (the moral self), using a puppet interview at 67 months. At 80 months, parents and teachers produced an overall measure of competent, adaptive functioning by rating children on multiple scales of competent, prosocial, rule-abiding behavior and antisocial behavior. As expected, children with histories of a stronger internalization of both parents’ rules were more competent and better socialized; for maternal rules, that link was mediated by the child’s moral self. The link between the child’s history of empathy toward the mother and future socialization was also significant, but it was not mediated by the moral self. This study elucidates the roles of classic components of morality—moral conduct, affect, and self—as antecedents of an adaptive developmental trajectory from toddler to early school age.
doi:10.1037/a0020381
PMCID: PMC3495080  PMID: 20822241
early conscience; moral self; competence; antisocial behavior; longitudinal studies
24.  Parents’ Testosterone and Children’s Perception of Parent-Child Relationship Quality 
Hormones and behavior  2011;60(5):512-519.
We examine the link between parental testosterone and children’s perceptions of their relationship with their mother and father. Using data from 352 predominantly white working and middle class families, we find no direct link between mother’s and father’s testosterone and parent-child closeness. However, the association between mothers’ testosterone and mother-child closeness appears to be influenced by the quality of two other family relationships. When father’s marital satisfaction is low, mothers with high testosterone have a poorer relationship with their children. And, when fathers report low levels of intimacy with their children, high testosterone women have a poorer relationship with their children. No comparable associations were observed among fathers.
doi:10.1016/j.yhbeh.2011.07.020
PMCID: PMC3210413  PMID: 21843525
mother testosterone; father testosterone; parent-child relationship quality; marital satisfaction
25.  Secrecy, disclosure and everything in-between: decisions of parents of children conceived by donor insemination, egg donation and surrogacy 
Reproductive biomedicine online  2011;10.1016/j.rbmo.2011.01.014.
This study examined families where children lack a genetic and/or gestational link with their parents. A total of 101 families (36 donor insemination families, 32 egg donation families and 33 surrogacy families) were interviewed when the child was aged 7 years. Despite a shift in professional attitudes towards openness, about half of the children conceived by egg donation and nearly three-quarters of those conceived by donor insemination remained unaware that the person they know as their mother or father is not, in fact, their genetic parent. By contrast, almost all the surrogacy parents had told their child how they were born. A majority of parents who planned never to tell their child about their conception had told at least one other person. However, qualitative data indicated that to categorize families as ‘secret’ or ‘open’ is inadequate. In fact many parents engage in ‘layers’ of disclosure about their child’s conception, both with their child and with family and friends.
doi:10.1016/j.rbmo.2011.01.014
PMCID: PMC3155651  PMID: 21398181
disclosure; donor conception; secrecy; surrogacy

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