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.
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.
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.
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.
To explore perceptions of psychosocial adaptations in parenting young children with type 1 diabetes (T1DM) from diagnosis through childhood.
Fourteen parents of eleven T1DM children diagnosed at ≤5 years participated in semi-structured interviews. Data were analyzed using content analysis.
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.
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.
parenting; type 1 diabetes; teamwork; qualitative
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.
health services research; visual impairment; children; disability; families
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.
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.
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.
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.
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.
Interviews were conducted with both mothers and fathers in 77 Swedish families.
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.
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.
To measure the relationship between perceived child competence, parental self‐efficacy, and children's glycaemic control.
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.
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.
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.
chronic disease; diabetes mellitus; parents; self efficacy; type 1 diabetes
The investigation studies the perception and attitudes of patents towards their mentally retarded child. Thirty such children were followed up after one year of initial contact and the parents were interviewed. Parents of higher education had a more scientific perception. Most parents had unrealistic hopes and expectations, feelings of shame, guilt and self blame were predominant. Rejection, hostility neglect of child and other negative attitudes were significantly more often seen in younger parents, urbanites and those with higher education. The negative attitudes were more towards a child with additional psychiatric problems. This information could be of great advmuge in managing families with a retarded child.
During the last decade an increasing use of differentiated support measures for pupils with special educational needs, indicative of a discrepancy between educational policies and practices, has been witnessed in Sweden. Another trend has been the increased use of medical diagnoses in school. The aim of this study was to explore the main concern of support given to pupils with special educational needs and how pupils and parents experience and handle this. Interviews were conducted with eight pupils in Grades 7–9—and their parents—at two compulsory schools in a city in northern Sweden. A grounded theory approach was used for analyzing the interview data. A conceptual model was generated illuminating the main concern of special support measures for pupils and parents. The core category of the model, struggling for recognition and inclusion, was related to two categories, which further described how this process was experienced and handled by the participants. These categories were labeled negotiating expertise knowledge within a fragmented support structure and coping with stigma, ambivalence, and special support measures. The developed conceptual model provides a deeper understanding of an ongoing process of struggle for recognition and inclusion in school as described by the pupils and parents.
Grounded theory; pupils with special educational needs; parents; special needs education; medical diagnosis; personal experiences
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.
adolescents; age; diabetes; efficacy; fathers; mothers; puberty
For many individuals, the diagnosis of diabetes is accompanied by the need for significant lifestyle changes, many of which seem difficult or impossible to implement. When diabetes is diagnosed in a child, those lifestyle changes may involve radical alterations in family life and significantly impact the child’s normal growth and development as well as the family’s social and economic status. This article describes some of the behavioral challenges associated with childhood diabetes and the importance of identifying strong, developmentally appropriate family support. Specific emphases are given to the complexity of the treatment regimens, the physiologic and emotional challenges associated with normal growth and development, and the family’s role in ensuring successful diabetes management. Challenges inherent in both type 1 and type 2 diabetes mellitus are discussed as are factors important to ensuring adherence to the treatment plan.
behavioral self-regulation; childhood diabetes; cognitive development; familial support; growth and development; motivation; obesity
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.
parental satisfaction; decision making; communication; paediatric oncology
When a child is diagnosed with childhood cancer this creates severe stress in the parents. The aim of the study was to describe the sense of coherence and its change over time in a sample of parents of children diagnosed with cancer.
The Swedish version of SOC (29 items) was used to measure the parents’ (n = 29) sense of coherence. Data were collected at four time-points: Time-point 1 at the time of diagnosis; time-point 2 during the treatment; time-point 3 after the child had completed their treatment and time-point 4 when the child had been off treatment for some years or had died.
The results showed that SOC in the investigated population is not stable over time. The parents decreased in total SOC between time-points 1, 2 and 3. Mothers had significantly weaker total SOC score including the components Manageability and Meaningfulness at time-points 1 as well time-point 2 compared to the fathers. However, for the component Comprehensibility no significant differences were shown between mothers and fathers. This study indicates that mothers’ and fathers’ SOC scores change over time during the child’s cancer trajectory. However, the pattern in these changes varies between mothers and fathers.
This study indicates that mothers and fathers may have different support needs during their child’s cancer trajectory.
While previous research has established a link between socioeconomic status (SES) and cancer outcomes, there is still little understanding of the processes that contribute to these outcome disparities.
This study aims to describe the ways a family's socioeconomic status (SES) influences their health care behavior after a child is diagnosed with cancer.
The sample included five case study families and in-depth interviews with 21 parents. Case study families were interviewed and observed once a month for six months.
Parents' finances influenced their ability to maintain household expenses, and to pay for health care expenses and household help. Wealth and help from friends and family are important aspects of families' financial statuses. Parents' educational attainment affected their ability to understand diagnosis and treatment options, their confidence and communication with health care professionals, and the utility of their social networks. Parents' occupation influenced their work schedule flexibility, fringe benefits, and their access to and quality of employer-sponsored health insurance.
Findings suggest that three overarching domains of SES (e.g. financial, education and occupation) have important implications for parents' health care navigation. This study underscores the need to use a nuanced set of SES measures (beyond income and education) in future research to enhance our understanding of how SES affects health care navigation, and refine intervention initiatives designed to help reduce health disparities.
Implications for Practice:
Cancer education initiatives should focus on enhancing patient-provider interactions, health communication, accessing health information, and resolving work and financial barriers to cancer care.
To examine young people's and parents' accounts of communication about cancer in childhood.
Semistructured interviews analysed using the constant comparative method.
Paediatric oncology unit.
13 families, comprising 19 parents (13 mothers, six fathers) and 13 patients aged 8-17 years, recruited from one paediatric oncology unit. The patients had cancer or brain tumour.
Most parents described acting in an executive-like capacity, managing what and how their children were told about their illness, particularly at the time of diagnosis. Their accounts were shaped by concerns to manage their identity as strong and optimistic parents and to protect their child's wellbeing. The patients identified elements of their parents' role that both facilitated and constrained their communication, and while they welcomed their parents' involvement, some expressed unease with the constraining aspects of their parents' role. Some young people described feeling marginalised in consultations and pointed to difficulties they experienced in encounters with some doctors.
There are difficulties in managing communication with young people who have a chronic, life threatening illness. Health professionals need to be aware of how the social positioning of young people (relative to adults) and the executive role of parents can contribute to the marginalisation of young people and hamper the development of successful relationships between themselves and young patients.
What is already known on this topicThe BMA has supported the principle of open communication with young patientsYoung people are sometimes excluded from participating in consultations and parents are reluctant to communicate openly with their seriously ill childrenWhat this study addsParents take on an executive-like role, managing what and how their children are told about their illnessesThis role both facilitates and constrains communication with young peopleSome young people feel marginalised in consultations—they described unease with this and problems in their relationships with some doctors
Parents of sick children frequently visit their general practitioners (GPs). The aim was to explore parents' interpretation of their child's incipient signs and symptoms when falling ill and their subsequent unsatisfactory experience with the GP in order to make suggestions for improvements in the medical encounter.
Setting and subjects
Twenty strategically selected families with a child from a birth cohort in Frederiksborg County, Denmark were interviewed.
Parents wanted to consult their GP at the right time, i.e. neither too early nor too late. Well-educated parents experienced a discrepancy between their knowledge about their child, the information they had sought about the illness and the consultation with the GP, when they were dismissed with phrases such as “it will disappear” or “it is just a virus”. The parents went along with the GP's advice if the child only occasionally became sick. However, parents of children with recurrent illnesses seemed very frustrated. During the course of several consultations with their GP, they started to question the GP's competence as the child did not regain health.
Parents want to be acknowledged as competent collaborators. The GP's failure to acknowledge the parents' knowledge of their child's current illness, and the parents' attempt to identify what is wrong with the child and make the child feel better before the encounter may have consequences for the GP's credibility. It is therefore recommended that parents of children with recurrent illnesses receive extra attention and information.
Cooperation; family practice; general practice; medical encounter; parents' management; sick children
Parents' reported ambivalence toward large-scale vaccination programs for childhood diseases may be related to their perception of the risks of side-effects or safety of vaccination and the risk of contracting the disease. The aim of this study is to evaluate parents' perceptions of their child's risk contracting a Meningococcal C infection and parents' perceived control in preventing infection in relation to their evaluation of the safety, effectiveness and usefulness of vaccination.
In a large-scale interview study, a random sample of parents was interviewed after their children had received vaccination against Meningococcal C in a catch-up campaign. Questions were asked about the perceived relative vulnerability of their child contracting an infection, perceived control in preventing an infection, and parents' evaluation of the safety, usefulness and effectiveness of vaccination.
61% of 2910 (N = 1763) parents who were approached participated. A higher perceived relative vulnerability of their own child contracting the disease was related to a more positive evaluation of the vaccination campaign, while a lower perceived vulnerability did not result in a more negative evaluation. A higher perceived control in being able to prevent an infection was, however, related to a more critical attitude toward the safety, usefulness and effectiveness of vaccination.
Perceived relative vulnerability contracting an infection and parents' perceived control in preventing an infection seem to influence parents' evaluation of the vaccination programme. Future studies should determine if, and under which circumstances, these perceptions also affect parents' vaccination behaviour and would be relevant to be taken into account when educating parents about vaccination.
The DAWN (Diabetes Attitudes, Wishes and Needs) study is a survey promoted by the International Diabetes Federation to recognize the perceptions and attitudes of people suffering from diabetes mellitus. In this context, we evaluated the quality of life of Italian and immigrant women with gestational diabetes mellitus (GDM). Information was gathered using a structured questionnaire for patients' self-compilation. In a 3-month period, a 51-item questionnaire was submitted to 198 Italians and 88 immigrants (from 27 different foreign nationalities). Italian women were older and had higher education than the immigrants. 60% of the Italians and 38% of the immigrants had a family history of diabetes mellitus. In both groups, the diagnosis of GDM caused anxiety; one-third of women feared their child could contract diabetes at delivery and/or have congenital malformations. Some women had trouble in following treatment regimens: the major concern being dietary advice and blood glucose testing. Most women were satisfied (34%) or highly satisfied (60%) with the quality of care, although the degree of cooperation between diabetes specialists and gynaecologists was considered sometimes unsatisfactory. In order to optimize maternal and foetal outcomes, educational projects and improved communication between patients and the healthcare provider team are recommended.
While fathers were neglected for a long time in research investigating families of pediatric patients, there are now a few studies available on fathers' posttraumatic stress symptoms (PTSS) and posttraumatic stress disorder (PTSD). However, little is known about the course of PTSS and PTSD in fathers of pediatric patients. The present study aimed to compare the prevalence and course of PTSS and PTSD in fathers of children with different chronic and acute conditions and to identify factors that contribute to fathers' PTSS.
Sixty-nine fathers of children newly diagnosed with either cancer, type I diabetes mellitus, or epilepsy and 70 fathers of children suffering from an unintentional injury completed questionnaires at 4–6 weeks (Time 1) and six months (Time 2) after diagnosis or injury.
Noticeable PTSD rates were found in fathers of children with a chronic disease (26% at Time 1 and 21% at Time 2, respectively). These rates were significantly higher than rates found in fathers of children with unintentional injuries (12% at Time 1 and 6% at Time 2, respectively). Within six months after the child's diagnosis or accident a decrease in severity of PTSS was observed in both groups. Significant predictors of PTSS at Time 2 were the father's initial level of PTSS, the child's medical condition (injuries vs. chronic diseases) and functional status, the father's use of dysfunctional coping strategies, and father's level of neuroticism.
Our findings suggest that fathers with initially high PTSS levels are at greater risk to experience PTSS at follow-up, particularly fathers of children with a chronic disease. Sensitizing health care professionals to the identification of PTSS symptoms but also to indicators of neuroticism and the use of specific coping strategies early in the treatment course is essential for the planning and implementation of adequate intervention strategies.
This paper reports the findings of a South Australian qualitative, exploratory study of children and young people living with a chronic disease, and their perceptions and experiences of physical activity. The perceptions and experiences of their parents were also explored. The chronic diseases were type 1 diabetes, asthma and cystic fibrosis.
Multiple qualitative data collection techniques were used to elicit the children and young people's perspectives and experiences of physical activity, including focus groups, maps, photos and 'traffic light posters'. The children's parents were interviewed separately to ascertain their views of their child's participation in physical activities.
Children and young people described their active participation in a wide variety of physical activities including organised sports and play, but made very little mention of any negative influence or impact due to their disease. Their parents' stories described the diligent background planning and management undertaken to enable their child to participate in a wide range of physical activities.
The results of this study suggest that for these children and young people, having a chronic disease was not perceived as a barrier to participation in organised sport and recreational activities. They were physically active and perceived themselves to be no different from their peers. Their positive beliefs were shared by their parents and the level of participation described was enabled by the high level of parental support and background planning involved in managing their child's health care needs.
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.
Focus group interviews were conducted with parents of children with sickle cell disease to explore parent-sibling communication about sickle cell disease. Communication was influenced by attributes and behaviors of the parent, the child with sickle cell disease, and the sibling; extended family, neighbors, friends, and church members or social networks; and available, accessible resources related to the child’s health, child’s school, and parent employment. Outcomes that influenced and were influenced by factors within and outside the parent-sibling dyad and nuclear family included parent satisfaction, parent roles, family intactness, and status attainment. These findings support previous research with African American families and expand our views of the importance of educating parents, family members, and others about sickle cell disease. The findings suggest a need to explore sibling perception of this communication, parent and sibling perception of the impact of frequent hospitalizations and clinic visits on the sibling and family, and variations within families of children with sickle cell disease.
African American families; family communication; parent-sibling communication; siblings; sickle cell disease
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.
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).
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.
Prognostic information; Childhood cancer; Communication
To explore parents' experiences during the admission of their children to a pediatric intensive care unit (PICU).
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.
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.
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.
Critical care; Pediatric; Experiences; Needs; Stress; Family-centered care; Qualitative research
The objective of this study was to determine the risk factors for childhood acute lymphoblastic leukemia (ALL) and, in particular, the role of parental occupational exposure to carcinogenic and probably carcinogenic hydrocarbons before the child's conception.
For this case-control study, cases were children younger than 15 years who were newly diagnosed with ALL between January 2000 and March 2005 at 1 of 6 Colombian hospitals. An interview with both parents of 170 children (85 cases and 85 individually matched neighborhood controls) gathered information about each child's exposures and parental demographic and occupational characteristics, medical history, health risk behaviors, and pregnancy and birth history. A job-exposure matrix was used to classify parental exposure to hydrocarbons on the basis of the main industrial activity of each workplace where parents worked before (both parents) or during the index pregnancy (mother only). Conditional odds ratios and 95% confidence intervals were calculated by period of exposure (preconception, pregnancy, and childhood).
The risk of childhood ALL was linked to 1) parental occupational exposure to hydrocarbons before conception, 2) parental smoking before conception, 3) maternal low socioeconomic status during pregnancy, and 4) higher maternal age (≥35 y) at the child's birth.
These findings suggest an association between childhood ALL and parental occupational exposure to carcinogenic and probably carcinogenic hydrocarbons before conception. Outcomes depended on the parent exposed. Future research should investigate the additive or multiplicative role of other environmental sources of hydrocarbons.
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.