Parents of children with a chronic condition such as juvenile arthritis must cope with greater demands than those living with a healthy child. They must adopt different behaviours in order to lessen the impact on the family structure. Parental coping refers to the parent's specific cognitive and behavioural efforts to reduce or manage a demand on the family system. The aims of this study were: to describe coping in a cohort of parents of children with JIA; to determine whether quality of life is associated with parental coping; to explore whether socio-demographic factors such as child's age, family socioeconomic status and family structure are associated with parental coping. One hundred eighty-two parents caring for a child with JIA completed a postal survey at three times over a one-year period, which included the Juvenile Arthritis Quality of Life Questionnaire (JAQQ), the Coping Health Inventory for Parents (CHIP) and questionnaires describing socio-demographic characteristics. Linear mixed models were employed to analyse the association between the child's quality of life and parental coping. Mean total QoL scores (JAQQ) showed that children experienced difficulty in completing specified activities at most just below 25% of the time and results fall off slightly following the 6 month time point. Mean parental coping scores for the CHIP subscales at baseline were 38.4 ± 9.0, 33.4 ± 11.6, 16.5 ± 6.1, for Maintaining Family Integration (maximum score 57), Maintaining Social Support (maximum score 54) and Understanding the Medical Situation (maximum score 24), respectively. Understanding the Medical Situation was deemed most useful. The child's QoL was associated with parental coping. Parents of children with greater psychosocial dysfunction used more coping behaviours related to Understanding the Medical Situation (β coefficient, 0.73; 95% CI, 0.01, 1.45). These findings underscore the importance of helping parents of children with JIA better understand their child's medical situation.
In 2009, the first German young carers project “SupaKids” was implemented in a large German city. The project’s concept was mainly based on findings of a prior Grounded Theory study, and the concept’s aim was to focus on supporting enrolled families (especially the children) in order to prevent negative effects. Quantitative as well as qualitative data have been assessed for the project’s evaluation. In this paper, first results on the mainly qualitative evaluation concerning the project’s impact are presented.
The project has an impact on the entire family. Both parents and children perceive the project as a kind of shelter, where they a) are allowed to be as they are, b) don’t have to explain themselves, c) meet others in similar situations, d) may deposit their sorrows, e) have a first port of call for any problem, f) experience a hiatus from the domestic situation, and g) find friends and peers. All enrolled families value this shelter as a copious relief.
The project’s concept has delivered an optimal performance in practice: the family-orientation seems to be appropriate, the concept’s modules seem to be all-embracing, and the modular body of the concept has been confirmed. The project relieves the entire family.
Trial Registration Number: NCT00734942.
Young-carers; evaluation; complex intervention.
A retrospective study was undertaken of 25 families and their 26 ill children attending the first children's hospice in the United Kingdom. The study examined the family's perceptions of the care offered and the impact of chronic and life threatening illness. Eighteen (72%) of the families felt they had been well supported by the hospice and valued the family like atmosphere, perceiving the staff to be friendly, approachable, and helpful. The actual nature of hospice care, in an environment with other terminally ill children, was, however, considered a drawback for a few families. A number of families still had unmet needs, notably appropriate child minding when away from the hospice. The impact of chronic life threatening illness on the families was substantial. The parents (particularly the mothers), the index children, and their siblings all experienced much higher levels of psychological symptomatology than would have been expected from normal samples. While families felt greatly helped over symptom control, a proportion remained very worried about certain symptoms, particularly breathlessness, seizures, and pain. A high proportion of families were experiencing financial and employment difficulties as a result of their children's illnesses.
How do parents cope when their child is ill or dying, and when he or she is experiencing constant pain or suffering? What do parents think of the contributions that medical professionals make to the care of their chronically or terminally ill child? Is it possible for a parent to love a child so much that they wish their child to be dead? The purpose of the present paper is to explore these questions and aspects of the care of chronically or terminally ill children using Mourning Dove’s portrayal of one family’s attempt to care for their ill daughter. Mourning Dove, a play written by Canadian playwright Emil Sher, was inspired by the case of Saskatchewan wheat farmer Robert Latimer who killed his 12-year-old daughter, Tracy, who suffered with cerebral palsy and had begun to experience tremendous pain. Rather than focusing on the medical or legal aspects of the care of a chronically ill child, the play offers a glimpse into how a family copes with the care of such a child and the effect the child’s illness has on the family. The reading and examination of nonmedical literature, such as Mourning Dove, serves as a useful means for medical professionals to better understand how illness affects and is responded to by patients and their families. This understanding is a prerequisite for them to be able to provide complete care of children with chronic or terminal illnesses and their families.
Chronic illness; Euthanasia; Literature; Paediatric
Young people below the age of 18, whose lives are affected by looking after a relative with a disability or long-term illness, are called young carers. Evidence based family oriented support for young carers and their families in Germany is currently being developed. To allow for scientific evaluation, an outcome criterion needs to be chosen. Until today, there are no assessment instruments available, which focus on young carer's specific demands and needs. As HRQOL seems to be an adequate alternative outcome criterion, an integrative review of the literature was carried out to verify this assumption.
The aim of the integrative review was to get information about a) the concept and the common definition of HRQOL in children, b) preferable HRQOL assessment techniques in children, and c) the relevance of HRQOL measures for the population of young carers. An additional aim of the review was to give advice on which instrument fits best to assess young carer's HRQOL in Germany. Searches were conducted in PubMed in order to obtain papers reporting about a) the development or psychometric assessment of instruments measuring HRQOL in children and adolescents up to the age of 18, and b) on the conceptual framework of HRQOL in children.
HRQOL is a multidimensional construct covering physical, emotional, mental, social, and behavioural components of well-being and functioning as subjective perceived by a person depending on the cultural context and value system one is living in. Young carer's problems and needs are well covered by these common domains of HRQOL. Since no specific HRQOL-measures are available to address young carers, a generic one has to be chosen which a) has been created for use in children, b) allows self- and proxy-report, and c) has good psychometric testing results. Comparing four generic measures with currently best published psychometric testing results, items of the KIDSCREEN cover young carer's specific problems most accurate.
The KIDSCREEN questionnaires seems adequate to evaluate the intervention as their items cover young carer's needs and problems most accurate.
Little is known about combining work with caring for a person with advanced illness. This is important given the increasing number of women in the workforce and current policy seeking to increase care in the community. The aim of this paper was to explore the meaning of work for women caring for a husband with an advanced illness and the consequences of combining these two roles.
A purposive sample of 15 carers was recruited from a hospital and from the community, via the patients they cared for. Their illnesses included chronic obstructive pulmonary disease, cancer, motor neurone disease, and heart failure. Data were collected through semi-structured, in-depth interviews that were tape-recorded and transcribed verbatim. A Grounded Theory approach was used and case studies were developed. NVivo software facilitated the management and analysis of the data.
Caring presented challenges to carers' work life. It diminished productivity or the quality of work, and led to missed opportunities for promotion. Work had an effect on the quality of care and the relationship with the patient, which eventually led to work being given up for caring. Three carers resisted the pressures to give up work and used it as a coping strategy.
A positive choice to remain in employment does not necessarily signal reluctance to care. Caring arrangements need to be understood from the common and separate interests of carers and the people they support.
The aim of this qualitative study was to deepen the knowledge of how individuals with schizophrenia themselves describe what they need in order to increase their well-being in everyday life. Seven patients were interviewed. An open explorative approach was applied and grounded theory was used for the analysis resulting in five categories illustrating how patients with schizophrenia handle their struggle for a normal life. The patients stressed first the importance of receiving information about the disease: for themselves, for society, and for their families. Taking part in social contacts such as attending meeting places and receiving home visits were identified as important as well as having meaningful employment. They also pointed out the importance of taking part in secure professional relationships. Mainly they expressed the need for continuity in the relationships and the wish to be heard and seen by the professionals. Finally, interviewees addressed the need for support for sustaining independent living through practical housekeeping and financial help. To conclude, the participants in the present study described their need for help as mainly linked to activities in their overall life situation rather than just their psychosis.
Schizophrenia; need for help; grounded theory; quality of life; well-being
Parents often need assistance in coping with specific problems encountered with their chronically ill child. A computer-based education program to improve coping and problem solving for parents of children with cystic fibrosis (CF) has been developed. Lessons are presented by microcomputer to parents who accompany their child to a Regional CF Center for routine health follow-up. Lesson design was based on the hypothesis that overall competence in adjusting to chronic illness increases when a parent learns general methods of coping with specific problem situations arising in their daily living with their chronically ill child. The effectiveness of these lessons is being evaluated, as well as the effect of child/parent attributes on the success of this type of health education.
Existential and spiritual concerns are fundamental issues in palliative care and patients frequently articulate these concerns. The purpose of this study was to understand the process of engaging with existential suffering at the end of life.
A grounded theory approach was used to explore processes in the context of situated interaction and to explore the process of existential suffering. We began with in vivo codes of participants' words, and clustered these codes at increasingly higher levels of abstractions until we were able to theorize.
Findings suggest the process of existential suffering begins with an experience of groundlessness that results in an overarching process of Longing for Ground in a Ground(less) World, a wish to minimize the uncomfortable or anxiety-provoking instability of groundlessness. Longing for ground is enacted in three overlapping ways: by turning toward one's discomfort and learning to let go (engaging groundlessness), turning away from the discomfort, attempting to keep it out of consciousness by clinging to familiar thoughts and ideas (taking refuge in the habitual), and learning to live within the flux of instability and unknowing (living in-between).
Existential concerns are inherent in being human. This has implications for clinicians when considering how patients and colleagues may experience existential concerns in varying degrees, in their own fashion, either consciously or unconsciously. Findings emphasize a fluid and dynamic understanding of existential suffering and compel health providers to acknowledge the complexity of fear and anxiety while allowing space for the uniquely fluid nature of these processes for each person. Findings also have implications for health providers who may gravitate towards the transformational possibilities of encounters with mortality without inviting space for less optimistic possibilities of resistance, anger, and despondency that may concurrently arise.
To understand how children living with parental mental illness (PMI) understand mental illness (MI) and what they want to tell other children.
The study design was a secondary analysis of a grounded theory study exploring Canadian children’s perceptions of living with PMI. Interviews from 22 children, ages 6 – 16, living with a parent with depression, bipolar disorder or schizophrenia receiving treatment for the MI, were re-read, coded and analyzed along with data categories, their properties, field notes and memos from the original data.
Children revealed that they had limited understanding of MI and received few factual explanations of what was happening. Limited information on MI caused undue hardship. Younger children worried about their parent dying, while older children also were concerned about developing MI. Children offered suggestions for other children in similar circumstances.
This study raises awareness of children living with PMI and identifies them as a population requiring services. It incorporates children’s perceptions of what they know and need to know. Children require assistance to understand and to respond to PMI. Mental health and primary health care clinicians have opportunities to assist these children within collaborative care models developed in conjunction with school services.
children; adolescents; parents; mental illness; grounded theory; enfants; adolescents; parents; maladie mentale; théorisation ancrée
From the very first stages of life, parents have provided their children with love and protection against harm from within or without, especially from life-threatening situations. Children's perception of death as a unique phenomena develops around age ten and later on, when they begin to grasp the meaning of mortality. This often occurs when they themselves suffer from terminal illness. Children have been the object of destruction, as witnessed by The Holocaust and Hiroshima. The threat of nuclear war poses a new problem for parents, since threatening others is no longer a viable solution to the conflict. In addition, adults manifest a massive denial that the destruction of mankind can take place at any time. This denial, like a family secret, prevents children from asking questions and expressing to their parents their fears about their own and mankind's destruction. Examples are given of how children do express their concerns and fears about the nuclear threat when they are allowed to express themselves. Unless this denial is replaced by open communication about the seriousness of the situation, children and adolescents will view the adults' denial as numbness and folly and as responsible for the world's destruction. A meaningful dialogue between parents and children about the threat is given as the solution to the family conflict.
Psychological distress is a common phenomenon in patients with heart failure. Depressive symptoms are often under-diagnosed or inadequately treated in primary care.
To analyse anxiety and/or depression in primary care patients with heart failure according to psychosocial factors, and to identify protective factors for the resolution of psychological distress.
Design of study
Longitudinal observation study.
Primary care practices in lower Saxony, Germany.
In 291 primary care patients with heart failure the following factors were measured using validated questionnaires at baseline and 9 months later: anxiety and depression (Hospital Anxiety and Depression Scale [HADS]), quality of life (Minnesota Living with Heart Failure Questionnaire), coping with illness (Freiburg questionnaire for coping with illness), and social support (social support questionnaire). Severity of heart failure (New York Heart Association [NYHA] classification and Goldman's Specific Activity Scale), and sociodemographic characteristics were documented using self-report instruments.
Twenty-six (32.5%) of the 80 patients who were distressed at baseline had normal HADS scores 9 months later, while the remainder stayed distressed. In logistic regression, baseline distress (odds ratios [OR] 5.51; 95% confidence intervals [CI] = 2.56 to 11.62), emotional problems (OR = 1.08; 95% CI = 1.00 to 1.17), social support (OR = 0.54; 95% CI = 0.35 to 0.83), and NYHA classification (OR = 1.70; 95% CI = 1.05 to 2.77) independently predicted distress at follow up. High social support contributed to a resolution of anxiety or depression, while partnership and low levels of emotional problems protected patients who began the study in a good emotional state from psychological distress.
In everyday practice it is important to consider that a high NYHA classification and emotional problems may contribute to anxiety or depression, while high social support and living in a relationship may positively influence the psychological health of patients with heart failure.
anxiety; depression; heart failure; primary health care
the outcome for children after psychiatric intervention in cases of
factitious illness by proxy.
METHODS—All 17 children from 16 families, selected for admission to the Park Hospital
Oxford family unit 1992-96 were followed up after a mean of 27 months.
Information was obtained on the children and their carers from general
practitioners, social workers or both; 13 of the children and carers
were at the severe end of the abuse spectrum; 12 involving direct
induction of illness, 1 tampering with samples to mimic illness, and 4 fabrication of symptoms. The biological mother was the abuser in all
cases. Four children and their parents had been initially admitted for
assessment, and 13 for treatment to decide whether family reunification
was viable. The 4 assessments clarified diagnosis, enabling improved
care plans to be made. Of the 13 treatment cases, 10 were reunited with
parents after a mean of 71/2 weeks'
admission, whereas 3 were discharged to out of home care. There was a
further episode of induced illness in 1 of the reunited children.
Although some mothers had continuing mental health difficulties, only 1 of the other reunited cases had appreciable parent-child relationship
difficulties (not requiring referral to psychiatric services). The
children did well in their development, growth, and adjustment.
reunification is feasible for certain cases, but long term follow up is
necessary to ensure the child's safety and to identify deterioration
in parent's mental health. The outcome for reunited children compared
well with reported untreated cases.
Parents of children with cancer must cope with multiple challenges over time. As most research on parental coping has been conducted in Western countries, little information is available on the parental experience of coping in non-Western countries. Using a new cultural sample of Korean mothers, this study describes their coping strategies. In addition, the association of particular coping patterns with mothers’ report of psychosocial adjustment is investigated.
A total of 200 Korean mothers of children with cancer participated in the study. Coping strategies were measured by the Coping Health Inventory for Parents in the following three categories: Maintaining Family Integration and an Optimistic Outlook for the Situation, Seeking Social Support, and Seeking Information. Maternal psychosocial adjustment was measured by psychological distress, family relationship, and social relationship subscales from the Psychosocial Adjustment to Illness Scale.
Korean mothers reported coping strategies related to Maintaining Family Integration and an Optimistic Outlook for the Situation as being most helpful. More frequent use of coping pattern, Maintaining Family Integration and an Optimistic Outlook for the Situation, and less frequent use of coping pattern, Information-Seeking were significantly associated with lower psychological distress and better family relationship after children’s medical and maternal characteristics were controlled for. Coping pattern, Seeking Social Support was only predictive of social relationships.
This study suggests that culture may play a significant role in the report of coping among Korean mothers. Future studies should consider culturally preferred coping methods and available resources as they relate to different adjustment outcomes.
coping; Korean; oncology; chronic illness; maternal; psychosocial adjustment
Families and other carers report widespread dissatisfaction with general hospital care for confused older people.
We undertook a qualitative interviews study of 35 family carers of 34 confused older patients to ascertain their experiences of care on geriatric and general medical, and orthopaedic wards of a large English hospital. Transcripts were analysed using a grounded theory approach. Themes identified in interviews were categorised, and used to build a model explaining dissatisfaction with care.
The experience of hospital care was often negative. Key themes were events (illness leading to admission, experiences in the hospital, adverse occurrences including deterioration in health, or perceived poor care); expectations (which were sometimes unrealistic, usually unexplored by staff, and largely unmet from the carers’ perspective); and relationships with staff (poor communication and conflict over care). Expectations were influenced by prior experience. A cycle of discontent is proposed. Events (or ‘crises’) are associated with expectations. When these are unmet, carers become uncertain or suspicious, which leads to a period of ‘hyper vigilant monitoring’ during which carers seek out evidence of poor care, culminating in challenge, conflict with staff, or withdrawal, itself a crisis. The cycle could be completed early during the admission pathway, and multiple cycles within a single admission were seen.
People with dementia who have family carers should be considered together as a unit. Family carers are often stressed and tired, and need engaging and reassuring. They need to give and receive information about the care of the person with dementia, and offered the opportunity to participate in care whilst in hospital. Understanding the perspective of the family carer, and recognising elements of the ‘cycle of discontent’, could help ward staff anticipate carer needs, enable relationship building, to pre-empt or avoid dissatisfaction or conflict.
Aged; Acute hospital care; Dementia; Delirium; Family carers; Satisfaction with care; Carer strain; Qualitative study; United Kingdom
Children and their families living in poor, inner-city neighborhoods are at high risk for experiencing multiple traumas. This article describes findings from a qualitative study designed to explore the impact of chronic traumas on family life through the voices of primarily African American caregivers coping with urban poverty. Structured interviews are conducted with 16 caregivers of children ages 6 to 9 years who had been exposed to multiple traumas and had symptoms of posttraumatic stress disorder. Caregivers explain changing daily routines to accommodate child distress and promoting positive family processes such as increased protectiveness. They also describe various roles that religion/spirituality play in their coping with trauma, including finding comfort in the faith that God controls what happens in their lives. These themes are discussed with regard to theory and practical applications for assisting traumatized families.
children; posttraumatic stress disorder; poverty; violence; trauma; family ritual; spirituality
Palliative care has become an emerging need of the day as the existing health-care facilities play only a limited role in the care of the chronically ill in the society. Patients with terminal illness in most cases spend their lives in the community among their family and neighbors, so there is the need for a multi disciplinary team for their constant care. Volunteers are primary care givers who originate normally from the same locality with local knowledge and good public contact through which they can make significant contributions in a team work by bridging the gap between the patient community and outside world.
The present study has been undertaken to analyze the impact of palliative care services on patients by considering 51 variables.
Materials and Methods:
The respondents of the study include 50 pain and palliative care patients selected at random from 15 palliative care units functioning in Ernakulam district. The analysis was made by using statistical techniques viz. weighted average method, Chi-square test, Friedman repeated measures analysis of variance on ranks and percentages.
The study revealed that the major benefit of palliative care to the patients is the reduction of pain to a considerable extent, which was unbearable for them earlier. Second, the hope of patients could be maintained or strengthened through palliative care treatment.
It is understood that the services of the doctors and nurses are to be improved further by making available their services to all the palliative care patients in a uniform manner.
Friedman repeated measures analysis of variance on ranks; Hospice; Neighborhood network in palliative care; Palliative care; PPC units
This qualitative study explored bereaved parents’ and siblings’ reports of legacies created by children with advanced cancer. Participants included 40 families of children who died from cancer, with 36 mothers, 27 fathers, and 40 siblings (ages 8–18 years). Individual interviews were completed at home approximately 10.68 months (SD = 3.48) after the child’s death. Content analysis of interviews indicated that many children living with cancer did specific things to be remembered, such as making crafts for others, willing away belongings, writing letters to loved ones, and giving special gifts. Some children, particularly those who were very ill or died unexpectedly, did not intentionally do or say anything to be remembered. Legacies included bereaved individuals remembering children’s qualities, concern for family, and beliefs about afterlife. Having advanced cancer appeared to motivate children to influence others’ lives and prepare for their own deaths. Children’s advice about how to live life inspired bereaved family members. Findings contribute to the current knowledge of legacy-making in children and offer implications for practice and future research.
childhood cancer; pediatric death; legacy; bereaved parent; bereaved sibling
Interventions to teach children healthy and effective coping skills could help reduce their risk for overweight. However, few studies have examined whether an intervention that teaches coping strategies in weight management can influence children’s coping behavior and psychosocial well-being.
To examine the efficacy of an interactive, child-centered, and family-based program in promoting effective coping, behavioral health, and quality of life in Chinese American children.
A randomized, controlled study of behavioral intervention in 67 Chinese American children (ages 8–10 years, normal weight and overweight) and their families. At baseline and 2, 6, and 8 months after baseline, children had anthropometric measurements and completed questionnaires related to coping skills and quality of life, and parents completed the Child Behavior Checklist.
Children in the intervention group reported using more active coping strategies and having a higher quality of life in the physical and emotional health domains than did children in the control group during the 8-month study. Children’s behavioral problems did not differ between the intervention and control groups. Changes in coping and psychosocial well-being were not related to change in body mass index (BMI) in the entire group, except increased BMI is associated with decreased emotional quality of life.
This culturally appropriate behavioral intervention was effective in promoting healthy coping and improving quality of life in Chinese American children. Its utility for both optimal weight and overweight children suggests potential application of the intervention in a broad range of populations.
childhood obesity; Chinese-Americans; coping; quality of life
The nuclear family is often the point of departure in much of the existing acculturation research on refugee youth and children of refugees. The influence of other extended family members appears to receive less attention in understanding acculturation processes and intergenerational perspectives. This qualitative study explores the influence of extended family members upon a small sample of Vietnamese refugee parents and their adolescents while they undergo acculturation through their long-term resettlement process in Norway. With repeated interviews over a time span of 3 years, we identified situations and processes in family life in which extended kin become particularly activated and influential. Vietnamese refugee families in Norway keep close contact with extended kin even in the face of geographical distance to kin remaining in Vietnam, or globally dispersed. Aunts, uncles, and cousins are experienced as significant persons in the lives of many adolescents. Additionally, birth order of parents can often influence relationship dynamics among siblings and siblings children. Extended kin surfaced as especially important and influential at critical stages and crisis situations in family life. Extended family, and in particular, parental siblings play important roles in the acculturation experience and family functioning of Vietnamese refugee families in Norway. This has important implications for the study of Vietnamese and other refugee and immigrant families in acculturation research.
Acculturation; Extended Family; Vietnamese; Refugees; Qualitative Methods; Mental Health
Aims: To describe the family background of street children in Aracaju, Brazil, their parents' perception of street life, and the reasons for the high prevalence of males observed among street children.
Methods: Cross sectional study using semi-structured interviews and qualitative focus group discussions with parents of purposively selected index street children.
Results: Fifty eight families were enrolled. Most participants were single parent, female headed families living in slums or low cost housing, with high levels of illiteracy, drug use, unemployment, and a history of migration. Most parents reported receiving financial support from their children and were aware of the dangers of the street. Many parents had lived in the street, worked from an early age, and had been adolescent parents themselves. Parents perceived that the street was more dangerous for girls than for boys. Besides economic reasons, parents highlighted the role of peers and drug use in pulling their children to the street. A total of 187 siblings were identified. Siblings had poor school performance with high school drop out rates. Twenty per cent of the adolescent girl siblings were not living at home. Gender determined the type of work undertaken by children and adolescents. Males worked in the streets and females worked as housemaids, shop assistants, and in restaurants and bars.
Conclusion: Family disintegration, poverty, drug use, adolescent pregnancy, peer pressure, and socially constructed gender roles determine the characteristics of children in the street. There is an urgent need for increased social support in this area.
We studied the effects on the family of childhood chronic renal failure by contrasting children with varying degrees of severity of illness with healthy controls. Disruption of family life was most common in families with the more severely ill children (on hospital haemodialysis) and there was a tendency for more mental health problems in the parents in this group. Although more of these parents reported that the child's illness had had an impact on the marriage, marital break up was not related to illness status. There were indications that illness had resulted in an increase of subjective stress but also of support in a number of psychosocial areas for parents, especially those in the more severely affected group. Nevertheless at the time of assessment, fewer mothers in this group were deriving support from their social life and fewer fathers of ill children from their jobs or finances.
The purpose of this study was to expand the understanding of the burden of illness experienced by adults with Attention Deficit-Hyperactivity Disorder (ADHD) living in different countries and treated through different health care systems.
Fourteen focus groups and five telephone interviews were conducted in seven countries in North America and Europe, comprised of adults who had received a diagnosis of ADHD. The countries included Canada, France, Germany, Italy, The Netherlands, United Kingdom, and United States (two focus groups in each country). There were 108 participants. The focus groups were designed to elicit narratives of the experience of ADHD in key domains of symptoms, daily life, and social relationships. Consonant with grounded theory, the transcripts were analyzed using descriptive coding and then themed into larger domains.
Participants’ statements regarding the presentation of symptoms, childhood experience, impact of ADHD across the life course, addictive and risk-taking behavior, work and productivity, finances, relationships and psychological health impacts were similarly themed across all seven countries. These similarities were expressed through the domains of symptom presentation, childhood experience, medication treatment issues, impacts in adult life and across the life cycle, addictive and risk-taking behavior, work and productivity, finances, psychological and social impacts.
These data suggest that symptoms associated with adult ADHD affect individuals similarly in different countries and that the relevance of the diagnostic category for adults is not necessarily limited to certain countries and sociocultural milieus.
Attention deficit hyperactivity disorder; Quality of life; Patient reported outcomes; Cross-cultural comparison
To assess the psychosocial burden and quality of life in parents of children with anorectal malformation.
Subjects and Methods:
This is a prospective study conducted in a tertiary care specialty hospital. Sample consisted of 50 parents (care givers), having children with anorectal malformation in the age group of 0-14 years. Data were collected through a semi structured interview with the care givers, using Zarit Burden Interview for assessing extent of burden and WHOQOL-BREF for assessing different aspects of quality of life. Statistical analysis used: frequencies, percentages, mean and standard deviations were calculated for analyzing the data.
The study reveals greater psychosocial burden and poor quality of life, in terms of the psychological and environmental aspects as compared to the physical and social aspects, among the care givers.
The study found increased psychosocial burden and negative impact on the quality of life of parents, which varies with the stages of management and proper continuous counseling is recommended.
Anorectal malformation; parents; psychosocial burden; quality of life
Longitudinal data were used to explore relations between teenage pregnancy, sexual behaviour, and family type. The study examined whether students from lone parent and/or teenage mother initiated families more commonly report sex, lack of contraception at first sex, and/or conceptions by age 15/16, and whether such associations can be explained by low parental strictness, difficult parent‐child communication, and/or low parental input into sex education. Up to date longitudinal UK research on family influences on conceptions is lacking, as is longitudinal research on family influences on sexual behaviour. No previous studies have comprehensively examined effects of parenting behaviours. Unlike previous research, this study tested theories suggesting that parenting deficits among lone parent and teenage initiated families increase risk of teenage pregnancy among their children.
Secondary analysis of data from a trial of sex education.
Girls and boys from lone parent families or having mothers who were teenagers when they were born were more likely to report sex but not lack of contraception at first sex by age 15/16. Girls and boys with mothers having them as teenagers, and boys but not girls from lone parent families, were more likely to report being involved in conceptions by age 15/16. Only the association between teenage mother family and girls' conceptions was reduced by adjusting for a parenting behaviour measure.
Students from lone parent families or having mothers who were teenagers when they were born are more likely to report early sexual debut and conceptions by age 15/16, but this is not generally explained by parenting style.
teenage; pregnancy; conception; adolescence; family; parenting; sexual; behaviour; contraception