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1.  Advanced Paternal Age Is Associated with Impaired Neurocognitive Outcomes during Infancy and Childhood 
PLoS Medicine  2009;6(3):e1000040.
Background
Advanced paternal age (APA) is associated with an increased risk of neurodevelopmental disorders such as autism and schizophrenia, as well as with dyslexia and reduced intelligence. The aim of this study was to examine the relationship between paternal age and performance on neurocognitive measures during infancy and childhood.
Methods and Findings
A sample of singleton children (n = 33,437) was drawn from the US Collaborative Perinatal Project. The outcome measures were assessed at 8 mo, 4 y, and 7 y (Bayley scales, Stanford Binet Intelligence Scale, Graham-Ernhart Block Sort Test, Wechsler Intelligence Scale for Children, Wide Range Achievement Test). The main analyses examined the relationship between neurocognitive measures and paternal or maternal age when adjusted for potential confounding factors. Advanced paternal age showed significant associations with poorer scores on all of the neurocognitive measures apart from the Bayley Motor score. The findings were broadly consistent in direction and effect size at all three ages. In contrast, advanced maternal age was generally associated with better scores on these same measures.
Conclusions
The offspring of older fathers show subtle impairments on tests of neurocognitive ability during infancy and childhood. In light of secular trends related to delayed fatherhood, the clinical implications and the mechanisms underlying these findings warrant closer scrutiny.
Using a sample of children from the US Collaborative Perinatal Project, John McGrath and colleagues show that the offspring of older fathers exhibit subtle impairments on tests of neurocognitive ability during infancy and childhood.
Editors' Summary
Background.
Over the last few decades, changes in society in the developed world have made it increasingly common for couples to wait until their late thirties to have children. In 1993, 25% of live births within marriage in England and Wales were to fathers aged 35–54 years, but by 2003 it was 40%. It is well known that women's fertility declines with age and that older mothers are more likely to have children with disabilities such as Down's syndrome. In contrast, many men can father children throughout their lives, and little attention has been paid to the effects of older fatherhood.
More recent evidence shows that a man's age does affect both fertility and the child's health. “Advanced paternal age” has been linked to miscarriages, birth deformities, cancer, and specific behavioral problems such as autism or schizophrenia.
Rates of autism have increased in recent decades, but the cause is unknown. Studies of twins and families have suggested there may be a complex genetic basis, and it is suspected that damage to sperm, which can accumulate over a man's lifetime, may be responsible. A woman's eggs are formed largely while she is herself in the womb, but sperm-making cells divide throughout a man's lifetime, increasing the chance of mutations in sperm.
Why Was This Study Done?
There is good evidence linking specific disorders with older fathers, but the link between a father's age and a child's more general intelligence is not as clear. A recent study suggested a link between reduced intelligence and both very young and older fathers. The authors wanted to use this large dataset to test the idea that older fathers have children who do worse on tests of intelligence. They also wanted to re-examine others' findings using this same dataset that older mothers have more intelligent children.
What Did the Researchers Do and Find?
The researchers gathered no new data but reanalyzed data on children from the US Collaborative Perinatal Project (CPP), which had used a variety of tests given to children at ages 8 months, 4 years, and 7 years, to measure cognitive ability—the ability to think and reason, including concentration, memory, learning, understanding, speaking, and reading. Some tests included assessments of “motor skills”—physical co-ordination.
The CPP dataset holds information on children of 55,908 expectant mothers who attended 12 university-affiliated hospital clinics in the United States from 1959 to 1965. The researchers excluded premature babies and multiple births and chose one pregnancy at random for each eligible woman, to keep their analysis simpler. This approach reduced the number of children in their analysis to 33,437.
The researchers analyzed the data using two models. In one, they took into account physical factors such as the parents' ages. In the other, they also took into account social factors such as the parents' level of education and income, which are linked to intelligence. In addition, the authors grouped the children by their mother's age and, within each group, looked for a link between the lowest-scoring children and the age of their father.
The researchers found that children with older fathers had lower scores on all of the measures except one measure of motor skills. In contrast, children with older mothers had higher scores. They found that the older the father, the more likely was this result found.
What Do These Findings Mean?
This study is the first to show that children of older fathers perform less well in a range of tests when young, but cannot say whether those children catch up with their peers after the age of 7 years. Results may also be biased because information was more likely to be missing for children whose father's age was not recorded.
Previous researchers had proposed that children of older mothers may perform better in tests because they experience a more nurturing home environment. If this is the case, children of older fathers do not experience the same benefit.
However, further work needs to be done to confirm these findings. Especially in newer datasets, current trends to delay parenthood mean these findings have implications for individuals, couples, and policymakers. Individuals and couples need to be aware that the ages of both partners can affect their ability to have healthy children, though the risks for individual children are small. Policymakers should consider promoting awareness of the risks of delaying parenthood or introducing policies to encourage childbearing at an optimal age.
Additional Information.
Please access these Web sites via the online version of this summary at http://dx.doi.org/10.1371/journal.pmed.1000040.
Mothers 35+ is a UK Web site with resources and information for older mothers, mothers-to-be, and would-be mothers, including information on the health implications of fathering a child late in life
The American Society for Reproductive Medicine published a Patient Information Booklet on Age and Fertility in 2003, which is available online; it contains a small section called “Fertility in the Aging Male,” but otherwise focuses on women
The online encyclopedia Wikipedia has a short article on the “Paternal age effect” (note that Wikipedia is a free online encyclopedia that anyone can edit; available in several languages)
In 2005, the UK Office of National Statistics published a booklet entitled “Perpetual postponers? Women's, men's and couple's fertility intentions and subsequent fertility behaviour” looking at data from the British Household Panel Survey
doi:10.1371/journal.pmed.1000040
PMCID: PMC2653549  PMID: 19278291
2.  Antecedents and Consequences of Caregiving Structure on Young Mothers and Their Infants 
Maternal and child health journal  2011;15(7):1037-1045.
This study describes the multigenerational caregiving structure of infants born to young women, the prenatal predictors of caregiving structure, and the effects of caregiving structure on the health of young mothers and their infants 6 months postpartum. The sample consisted of 784 young mothers involved in a longitudinal study in two U.S. cities. Women were classified into eight caregiving structure groups based on the mother’s report of herself as a caregiver and her selection of the baby’s father and/or grandparents as caregivers. ANCOVA analyses identified predictors and 6 month postpartum outcomes of caregiving structure. Planned comparisons explored the relationships among caregiving structure groups. A majority of women reported caregiving structures other than herself and the father as caregivers (87.1%). Grandparents were indicated as caregivers by most women (62.2%). Postpartum caregiving groups differed on prenatal social support, self-esteem, attachment avoidance and anxiety, relationship status, and living with the baby’s father. While mother’s self esteem significantly predicted father involvement, there were no differences on predictors between when the mother and father were caregivers, versus when the mother and grandparents were caregivers. Differences existed between groups on mother and child outcomes, including parenting stress, distress, and child dysfunction. Women reported significantly less parenting stress, child dysfunction, and negative child emotions when she and the father were caregivers, versus when she and grandparents were caregivers. The family system and the intergenerational dynamics within a multigenerational caregiving structure are critical to the health and well-being of both mothers and their children.
doi:10.1007/s10995-010-0650-3
PMCID: PMC3061973  PMID: 20680671
Caregiving structure; Adolescent pregnancy; Family systems theory; Parenthood and family development; Grandmothers raising grandchildren
3.  Relationship Trajectories, Parenting Stress, and Unwed Mothers’ Transition to a New Baby 
Parenting, science and practice  2009;9(1-2):160-177.
SYNOPSIS
Objective
The present study examined associations between unwed mothers’ residency and romantic relationships with the biological father during the transition to a new baby and mothers’ later parenting stress. It also examined whether fathers’ financial and caregiving support accounted for variation in parenting stress across relationship trajectories.
Design
Data were drawn from first two waves of the Fragile Families and Child Wellbeing Study (FFCWS) (N = 2,736 in 18 cities), with relationship status measured at the focal child’s birth and one year later, and parenting stress measured one year after birth.
Results
Parenting stress was highest among mothers who broke up with the father during the first year and lowest among those in consistent romantic relationships regardless of parents’ coresidence status. Both fathers’ financial and caregiving support mediated the association between relationship dissolution and higher maternal parenting stress, although caregiving support accounted for a larger proportion of the variation.
Conclusions
Programs to support low-income, unwed mothers should understand the hardships of a breakup may spill over into other socioemotional domains, such as parenting, when experienced during the transition to a new baby and that mothers who have experienced a breakup may require additional caregiving support services during this vulnerable time.
doi:10.1080/15295190802656844
PMCID: PMC2843930  PMID: 20333272
4.  Parent–Adolescent Discrepancies in Perceived Parenting Characteristics and Adolescent Developmental Outcomes in Poor Chinese Families 
We examined the relationships between parent–adolescent discrepancies in perceived parenting characteristics (indexed by parental responsiveness, parental demandingness, and parental control) and adolescent developmental outcomes (indexed by achievement motivation and psychological competence) in poor families in Hong Kong. A sample of 275 intact families having at least one child aged 11–16 experiencing economic disadvantage were invited to participate in the study. Fathers and mothers completed the Parenting Style Scale and Chinese Parental Control Scale, and adolescents completed the Social-Oriented Achievement Motivation Scale and Chinese Positive Youth Development Scale in addition to paternal and maternal Parenting Style Scale and Chinese Parental Control Scale. Results indicated that parents and adolescents had different perceptions of parental responsiveness, parental demandingness, and paternal control, with adolescents generally perceived lower levels of parenting behaviors than did their parents. While father–adolescent discrepancy in perceived paternal responsiveness and mother–adolescent discrepancy in perceived maternal control negatively predicted adolescent achievement motivation, mother–adolescent discrepancy in perceptions of maternal responsiveness negatively predicted psychological competence in adolescents experiencing economic disadvantage. The present findings provided support that parent–child discrepancies in perceived parenting characteristics have negative impacts on the developmental outcomes of adolescents experiencing economic disadvantage. The present study addresses parent–child discrepancies in perceived parental behaviors as “legitimate” constructs, and explores their links with adolescent psychosocial development, which sheds light for researchers and clinical practitioners in helping the Chinese families experiencing economic disadvantage.
doi:10.1007/s10826-013-9775-5
PMCID: PMC3890555  PMID: 24482569
Poverty; Parenting; Parental control; Achievement motivation; Psychological competence; Adolescent
5.  Caregiver Perceptions and Motivation for Disclosing or Concealing the Diagnosis of HIV Infection to Children Receiving HIV Care in Mbarara, Uganda: A Qualitative Study 
PLoS ONE  2014;9(3):e93276.
Background
Disclosure of the diagnosis of HIV to HIV-infected children is challenging for caregivers. Despite current recommendations, data suggest that levels of disclosure of HIV status to HIV-infected children receiving care in resource-limited settings are very low. Few studies describe the disclosure process for children in these settings, particularly the motivators, antecedent goals, and immediate outcomes of disclosure to HIV-infected children. This study examined caregivers' perception of the disclosure concept prior to disclosure, their motivation towards or away from disclosure, and their short- and long-term intentions for disclosure to their HIV-infected children.
Methods
In-depth interviews were conducted with primary caregivers of 40 HIV-infected children (ages 5–15 years) who were receiving HIV care but did not know their HIV status.
Results
Caregivers of HIV-infected children mainly perceived disclosure as a single event rather than a process of gradual delivery of information about the child's illness. They viewed disclosure as potentially beneficial both to children and themselves, as well as an opportunity to explain the parents' role in the transmission of HIV to the children. Caregivers desired to personally conduct the disclosure; however, most reported being over-whelmed with fear of negative outcomes and revealed a lack of self-efficacy towards managing the disclosure process. Consequently, most cope by deception to avoid or delay disclosure until they perceive their own readiness to disclose.
Conclusions
Interventions for HIV disclosure should consider that caregivers may desire to be directly responsible for disclosure to children under their care. They, however, need to be empowered with practical skills to recognize opportunities to initiate the disclosure process early, as well as supported to manage it in a phased, developmentally appropriate manner. The potential role for peer counselors in the disclosure process deserves further study.
doi:10.1371/journal.pone.0093276
PMCID: PMC3965550  PMID: 24667407
6.  The power of social connection and support in improving health: lessons from social support interventions with childbearing women 
BMC Public Health  2011;11(Suppl 5):S4.
Background and objective
Social support interventions have a somewhat chequered history. Despite evidence that social connection is associated with good health, efforts to implement interventions designed to increase social support have produced mixed results. The aim of this paper is to reflect on the relationship between social connectedness and good health, by examining social support interventions with mothers of young children and analysing how support was conceptualised, enacted and valued, in order to advance what we know about providing support to improve health.
Context and approach
First, we provide a brief recent history of social support interventions for mothers with young children and we critically examine what was intended by ‘social support’, who provided it and for which groups of mothers, how support was enacted and what was valued by women. Second, we examine the challenges and promise of lay social support approaches focused explicitly on companionship, and draw on experiences in two cluster randomised trials which aimed to improve the wellbeing of mothers. One trial involved a universal approach, providing befriending opportunities for all mothers in the first year after birth, and the other a targeted approach offering support from a ‘mentor mother’ to childbearing women experiencing intimate partner violence.
Results
Interventions providing social support to mothers have most often been directed to women seen as disadvantaged, or ‘at risk’. They have also most often been enacted by health professionals and have included strong elements of health education and/or information, almost always with a focus on improving parenting skills for better child health outcomes. Fewer have involved non-professional ‘supporters’, and only some have aimed explicitly to provide companionship or a listening ear, despite these aspects being what mothers receiving support have said they valued most. Our trial experiences have demonstrated that non-professional support interventions raise myriad challenges. These include achieving adequate reach in a universal approach, identification of those in need of support in any targeted approach; how much training and support to offer befrienders/mentors without ‘professionalising’ the support provided; questions about the length of time support is offered, how ‘closure’ is managed and whether interventions impact on social connectedness into the future. In our two trials what women described as helpful was not feeling so alone, being understood, not being judged, and feeling an increased sense of their own worth.
Conclusion and implications
Examination of how social support has been conceptualised and enacted in interventions to date can be instructive in refining our thinking about the directions to be taken in future research. Despite implementation challenges, further development and evaluation of non-professional models of providing support to improve health is warranted.
doi:10.1186/1471-2458-11-S5-S4
PMCID: PMC3247027  PMID: 22168441
7.  The Relationship between Socio-demographic Characteristics, Family Environment, and Caregiver Coping in Families of Children with Cancer 
Journal of clinical psychology in medical settings  2013;20(4):10.1007/s10880-013-9362-3.
The factors that influence caregiver coping mechanism preferences after a child’s diagnosis with cancer are not fully understood. This study examines the relationship between caregivers’ socio-demographic characteristics and the coping strategies they use to adapt to childhood cancer. Sixty caregivers of pediatric cancer patients completed a socio-demographic questionnaire, the Family Environment Scale, and the COPE inventory. There were no significant differences in family environment by income or education. Caregiver educational attainment was positively associated with use of planning and active coping styles, while income was not associated with caregiver coping style. Mothers were more likely than fathers to use active coping, instrumental support, religious coping, and emotional support. Men with lower education engaged in greater substance use coping and lower planning. The findings show that educational attainment and caregiver gender influence caregiver coping styles following a pediatric cancer diagnosis and suggest that educational attainment rather than financial resources drive the association between SES and coping. Programs that address educational gaps and teach caregivers planning and active coping skills may be beneficial for parents with lower educational attainment, particularly men.
doi:10.1007/s10880-013-9362-3
PMCID: PMC3830713  PMID: 23670676
Socioeconomic status; Coping; Family environment; Gender; Cancer
8.  Beyond Absenteeism: Father Incarceration and Child Development* 
Demography  2012;49(1):49-76.
High rates of incarceration among American men, coupled with high rates of fatherhood among men in prison, have motivated recent research on the effects of parental imprisonment on children’s development. We use data from the Fragile Families and Child Wellbeing Study to examine the relationship between paternal incarceration and developmental outcomes for approximately 3,000 urban children. We estimate cross-sectional and longitudinal regression models that control not only for fathers’ basic demographic characteristics and a rich set of potential confounders, but also for several measures of pre-incarceration child development and family fixed effects. We find significant increases in aggressive behaviors among children whose fathers are incarcerated, and some evidence of increased attention problems. The estimated effects of paternal incarceration are stronger than those of other forms of father absence, suggesting that children with incarcerated fathers may require specialized support from caretakers, teachers, and social service providers. The estimated effects are stronger for children who lived with their fathers prior to incarceration, but are also significant for children of nonresident fathers, suggesting that incarceration places children at risk through family hardships including and beyond parent-child separation.
doi:10.1007/s13524-011-0081-9
PMCID: PMC3703506  PMID: 22203452
9.  First-Year Maternal Employment and Child Development in the First Seven Years 
Using data from the first 2 phases of the NICHD Study of Early Child Care, we examine the links between maternal employment in the first 12 months of life and cognitive, social, and emotional outcomes for children at age 3, age 4½, and first grade. Drawing on theory and prior research from developmental psychology as well as economics and sociology, we address three main questions. First, what associations exist between first-year maternal employment and cognitive, social, and emotional outcomes for children over the first seven years of life? Second, to what extent do any such associations vary by the child’s gender and temperament, or the mother’s occupation? Third, to what extent do mother’s earnings, the home environment (maternal depressive symptoms, sensitivity, and HOME scores), and the type and quality of child care mediate or offset any associations between first-year employment and child outcomes, and what is the net effect of first-year maternal employment once these factors are taken into account?
We compare families in which mothers worked full time (55%), part time (23%), or did not work (22%) in the first year for non-Hispanic white children (N=900) and for African-American children (N=113). Comparisons are also made taking into account the timing of mothers’ employment within the first year. A rich set of control variables are included. OLS and SEM analyses are constructed.
With regard to cognitive outcomes, first, we find that full-time maternal employment in the first 12 months of life (but not part-time employment) is associated with significantly lower scores on some, but not all, measures of cognitive development at age 3, 4 ½, and first grade for non-Hispanic white children, but with no significant associations for the small sample of African-American children Part-time employment in the first year is associated with higher scores than full-time employment for some measures. Employment in the second and third year of life is not associated with the cognitive outcomes. Second, we examine the role of the child’s gender and temperament and the mother’s occupation in moderating the associations between first-year maternal employment and cognitive outcomes, but find few significant interactions for either child characteristics or mother’s occupation. Third, we examine the role of an extensive set of potential mediators – the mother’s earnings, the home environment, and the type and quality of child care. We find that mothers who worked full time have higher income in the first year of life and thereafter, that mothers who worked part time have higher HOME and maternal sensitivity scores than mothers who did not work or worked full time, and that mothers who worked either full time or part time were more likely to place their children in high-quality child care by age 3 and 4 ½ and their children spent more time in center-based care by age 4 ½ than in families where mothers did not work in the first year of life. However, we also find some links between first-year maternal employment and elevated levels of maternal depressive symptoms thereafter. Turning to results from structural equation modeling, we find that the overall effects of first-year maternal employment on the cognitive outcomes are neutral. This occurs because significantly negative direct effects of full-time first-year employment are offset by significantly positive indirect effects working through more use of center-based care and greater maternal sensitivity by age 4 ½.
Regarding social and emotional outcomes, several findings, again limited to non-Hispanic white children, stand out. First, we find no significant associations between first-year maternal employment and later social and emotional outcomes (including attachment security) when comparing children whose mothers worked full-time or part-time in the first year with the reference group of children whose mothers did not work in the first year, although in models that take the timing of employment within the first year into account, we find some significant associations between full-time maternal employment in the first year and higher levels of caregiver- or teacher-reported externalizing problems at age 4 ½ and first grade. Second, part-time maternal employment by 12 months tends to be associated with fewer externalizing problems at age 4 ½ and first grade than full time maternal employment by 12 months. These results are unchanged when we allow for the possibility of moderation by child characteristics or maternal occupation. Third, the results from SEM models indicate that, while neither full-time nor part-time first-year employment has significant total effects on children’s externalizing behavior problems at age 4 ½ or first grade, part-time first-year employment has indirect positive effects, working primarily through differences in the home environment and maternal sensitivity. Another important finding from the SEM models is that center-based care, which is often associated with maternal employment, is not significantly associated with elevated levels of child behavior problems.
Taken together, our findings provide new insight as to the net effects of first-year maternal employment as well as the potential pathways through which associations between first-year maternal employment and later child outcomes, where present, come about. Our SEM results indicate that, on average, the associations between first-year maternal employment and later cognitive, social, and emotional outcomes are neutral, because negative effects, where present, are offset by positive effects. These results confirm that maternal employment in the first year of life may confer both advantages and disadvantages and that for the average non-Hispanic white child, those effects balance each other.
doi:10.1111/j.1540-5834.2010.00562.x
PMCID: PMC4139074  PMID: 25152543
10.  Parents’ expectations of staff in the early bonding process with their premature babies in the intensive care setting: a qualitative multicenter study with 60 parents 
BMC Pediatrics  2013;13:18.
Background
During the first weeks of hospitalization, premature babies and their parents encounter difficulties in establishing early bonds and interactions. Only a few studies have explored what caregivers can do to meet parents' needs in relation to these interactions and help optimize them. This study sought to explore parents' perception of these first interactions and to identify the actions of caregivers that help or hinder its development.
Methods
Prospective study, qualitative discourse analysis of 60 face-to-face interviews conducted with 30 mothers and 30 fathers of infants born before 32 weeks of gestation (mean ± SD: 27 ± 2 weeks of gestational age), during their child's stay in one out of three NICUs in France. Interviews explored parental experience, from before birth up to the first month of life.
Results
Data analysis uncovered two main themes, which were independent of parents' geographical or cultural origin but differed between mothers and fathers. First, fathers described the bond with their child as composed more of words and looks and involving distance, while mothers experienced the bond more physically. Secondly, two aspects of the caregivers' influence were decisive: nurses' caring attitude towards baby and parents, and their communication with parents, which reduced stress and made interactions with the baby possible. This communication appeared to be the locus of a supportive and fulfilling encounter between parents and caregivers that reinforced parents' perception of a developing bond.
Conclusions
At birth and during the first weeks in the NICU, the creation of a bond between mothers and fathers and their premature baby is rooted in their relationship with the caregivers. Nurses' caring attitude and regular communication adapted to specific needs are perceived by parents as necessary preconditions for parents' interaction and development of a bond with their baby. These results might allow NICU staff to provide better support to parents and facilitate the emergence of a feeling of parenthood.
doi:10.1186/1471-2431-13-18
PMCID: PMC3568058  PMID: 23375027
Prematurity; Bond; Child development; Newborn; NICU; Nurses; Family centered care; Parenting
11.  Perspectives on child diarrhoea management and health service use among ethnic minority caregivers in Vietnam 
BMC Public Health  2011;11:690.
Background
In Vietnam, primary government health services are now accessible for the whole population including ethnic minority groups (EMGs) living in rural and mountainous areas. However, little is known about EMGs' own perspectives on illness treatment and use of health services. This study investigates treatment seeking strategies for child diarrhoea among ethnic minority caregivers in Northern Vietnam in order to suggest improvements to health services for EMGs and other vulnerable groups.
Methods
The study obtained qualitative data from eight months of field work among four EMGs in lowland and highland villages in the Northern Lao Cai province. Triangulation of methods included in-depth interviews with 43 caregivers of pre-school children (six years and below) who had a case of diarrhoea during the past month, three focus group discussions (FGDs) with men, and two weeks of observations at two Communal Health Stations (CHGs). Data was content-analyzed by ordering data into empirically and theoretically inspired themes and sub-categories assisted by the software NVivo8.
Results
This study identified several obstacles for EMG caregivers seeking health services, including: gender roles, long travelling distances for highland villagers, concerns about the indirect costs of treatment and a reluctance to use government health facilities due to feelings of being treated disrespectfully by health staff. However, ethnic minority caregivers all recognized the danger signs of child diarrhoea and actively sought simultaneous treatment in different health care systems and home-based care. Treatments were selected by matching the perceived cause and severity of the disease with the 'compatibility' of different treatments to the child.
Conclusions
In order to improve EMGs' use of government health services it is necessary to improve the communication skills of health staff and to acknowledge both EMGs' explanatory disease models and the significant socio-economic constraints they experience. Broader health promotion programs should address the significant gender roles preventing highland mothers from seeking health services and include family elders and fathers in future health promotion programs. Encouraging existing child health care practices, including continued breastfeeding during illness and the use of home-made rehydration solutions, also present important opportunities for future child health promotion.
doi:10.1186/1471-2458-11-690
PMCID: PMC3189136  PMID: 21896194
12.  Burden and Depression Among Caregivers of Patients with Cancer at the End-of-life 
Oncology nursing forum  2004;31(6):1105-1117.
Purpose/Objectives
The purpose of the study was to examine the patient and family caregiver variables that predicted caregiver burden and depression for family caregivers of patients with cancer at the end-of-life.
Design
A prospective, longitudinal study was implemented with an inception cohort of patients and their family caregivers who were followed after the diagnosis and treatment of cancer. Data were analyzed using quantitative methods to determine the effect of caregiver age, sex, education, relationship to the patient, employment status, reports of patients’ symptoms, patient cancer type, stage of cancer, and time from the patient’s diagnosis to death on caregiver burden and depression at the patient’s end-of-life. This report examines the experiences of family caregivers whose patients died during the study.
Setting
Patients and caregivers were accrued from community oncology sites in the Midwestern United States.
Sample
152 family caregivers of patients with cancer who died during the course of the study.
Methods
Telephone interviews with patients were conducted at 6–8 weeks, 12–16 weeks, 24–30 weeks, and 52 weeks following patients’ diagnoses. In addition, patient medical records and state death certificates were reviewed.
Findings
Caregivers aged 45–54 reported the highest levels of depressive symptoms; caregivers aged 35–44 reported the strongest sense of abandonment. Caregivers who were the adult children of patients with cancer and who were employed reported high levels of depressive symptoms. Feeling abandoned (a portion of caregiver burden) was more prevalent in female, non-spouse, and adult children caregivers, and adult children caregivers of patients with early stage cancer and patients with multiple symptoms reported a high perception of disruption in their schedule due to providing care. Caregivers whose patients died early following diagnosis (between waves I and II) reported the highest depressive symptoms, burden, and impact on schedule.
Implications
Very little research exists that prospectively analyzes family caregiver experiences of burden and depression when providing end-of-life cancer care for a family member. Interventions aimed at decreasing caregiver depressive symptoms should be targeted at caregivers who are middle aged, adult children, and those who are employed. Interventions aimed at decreasing the burden associated with feeling abandoned and having schedules disrupted due to providing care should be targeted at caregivers who are female, non-spouse and adult children, and caregivers of patients with early stage cancer and multiple symptoms.
doi:10.1188/04.ONF.1105-1117
PMCID: PMC1315286  PMID: 15547633
13.  Parental Relationships in Fragile Families 
Summary
As nonmarital childbearing escalated in the United States over the past half century, fragile families—defined as unmarried couples with children—drew increased interest from researchers and policy makers. Sara McLanahan and Audrey Beck discuss four aspects of parental relationships in these families: the quality of parents’ intimate relationship, the stability of that relationship, the quality of the co-parenting relationship among parents who live apart, and nonresident fathers’ involvement with their child.
At the time of their child’s birth, half of the parents in fragile families are living together and another third are living apart but romantically involved. Despite high hopes at birth, five years later only a third of parents are still together, and new partners and new children are common, leading to high levels of instability and complexity in these families.
Drawing on findings from the Fragile Families and Child Wellbeing Study, McLanahan and Beck highlight a number of predictors of low relationship quality and stability in these families, including low economic resources, government policies that discourage marriage, gender distrust and acceptance of single motherhood, sex ratios that favor men, children from previous unions, and psychological factors that make it difficult for parents to maintain healthy relationships. No single factor appears to have a dominant effect.
The authors next discuss two types of experiments that attempt to establish causal effects on parental relationships: those aimed at altering economic resources and those aimed at improving relationships.
What can be done to strengthen parental relationships in fragile families? The authors note that although economic resources are a consistent predictor of stable relationships, researchers and policy makers lack good causal information on whether increasing fathers’ employment and earnings will increase relationship quality and union stability. They also note that analysts need to know more about whether relationship quality in fragile families can be improved directly and whether doing so will increase union stability, father involvement, and co-parenting quality.
PMCID: PMC3053572  PMID: 20964130
14.  The Socioemotional Outcomes of Young Children of Teenage Mothers by Paternal Coresidence 
Journal of family issues  2012;34(9):1217-1237.
To date, no study has examined the implications of biological fathers’ coresidence for the socioemotional development of children of teenage mothers. Previous research suggests competing hypotheses. Men who father children with teenage women have low education and earnings and are disproportionately likely to be antisocial. However, teenage mothers are less distressed when fathers are more involved caregivers. The current study follows a multi-city sample of children born to teenage women (n = 509) for their first three years of life in the Fragile Families and Child Wellbeing Study. Children whose biological father coresided continuously (20%) were more likely to be securely attached to their mother and had fewer externalizing problems than other children at age 3. Paternal coresidence did not increase household income, and it only marginally lowered maternal parenting stress.
doi:10.1177/0192513X12454654
PMCID: PMC3904445  PMID: 24482552
teenage mothers; family structure; early childhood development
15.  Consultation etiquette in general practice: a qualitative study of what makes it different for lay cancer caregivers 
BMC Family Practice  2011;12:110.
Background
It is commonplace for lay caregivers to overlook their own health concerns when supporting someone with advanced cancer. During this time, caregivers' needs as patients are often marginalised by health professionals, including General Practitioners (GPs), who may miss the breadth of caregivers' needs by focusing on the practicalities of caregiving. GPs traditionally rely on patients to raise their concerns, and then respond to these concerns, but caregivers as patients may be disinclined to cue their GP. The norms of engagement when caregivers consult their GP are less defined, and how they interact with their GP regarding their own health is under-explored. This sub-study investigates the norms, assumptions and subtleties which govern caregiver-GP consultations, and explores factors affecting their interaction regarding caregivers' own health concerns.
Methods
We conducted semi-structured interviews with six lay caregivers and 19 health professionals in Brisbane, Australia, and analyzed the interview transcripts thematically.
Results
Traditional norms of engagement are subjected to assumptions and expectations which caregivers and GPs bring to the consultation. Practice pressures also influence both parties' capacity and willingness to discuss caregivers' health. Nonetheless, some GPs monitor caregivers' health opportunistically. Their interaction is enhanced by the quality of the caregiver-GP relationship and by the GP's skills.
Conclusions
Caregivers are caught in a paradox whereby their health needs may become subsumed by the care recipient's needs in a setting where patient needs are normally scrutinised and supported. Caregivers may not raise their health concerns with their GP, who instead may need to cue them that it is timely and safe to do so. The routine use of a prompt may help to address caregivers' needs systematically, but it needs to be complemented by GPs' desire and capacity to engage with patients in a caregiving role. The potential difference GPs can make to the health of these patients is substantial.
doi:10.1186/1471-2296-12-110
PMCID: PMC3198678  PMID: 21970440
16.  Female inmates, family caregivers, and young children's adjustment: A research agenda and implications for corrections programming 
Journal of criminal justice  2008;36(6):513-521.
Attendant to the exponential increase in rates of incarceration of mothers with young children in the United States, programming has been established to help mothers attend to parenting skills and other family concerns while incarcerated. Unfortunately, most programs overlook the important, ongoing relationship between incarcerated mothers and family members caring for their children—most often, the inmates' own mothers. Research reveals that children's behavior problems escalate when different co-caregivers fail to coordinate parenting efforts and interventions, work in opposition, or disparage or undermine one another. This article presents relevant research on co-caregiving and child adjustment, highlights major knowledge gaps in need of study to better understand incarcerated mothers and their families, and proposes that existing interventions with such mothers can be strengthened through targeting and cultivating functional coparenting alliances in families.
doi:10.1016/j.jcrimjus.2008.09.002
PMCID: PMC2641026  PMID: 19884977
17.  Concerns and considerations among caregivers of a child with autism in Qatar 
BMC Research Notes  2012;5:290.
Background
Autism impacts the lives of the family looking after a child with the condition in different ways, and forces family members to modify their daily lives to suit their reality. To our knowledge, no previous research investigated concern and considerations of parents/caregivers of children with autism in Qatar or the Arabic speaking Middle Eastern region.
Methods
Caregivers of a child who was between the age of 3 to17 years old at the time of the study and who was diagnosed with ASD (Autistic Group or AG) were recruited from the two main developmental pediatric and children rehabilitation clinics in Qatar. The control group (non-autism group, or NAG) was represented by caregivers of a non-autistic child between the age of 3 to 17 years old at the time of the study and who were visiting a family clinic of a primary health care facility for routine medical check-up. Data collected from both groups included related to the child (e.g. the child’s date of birth, his/her relation to the caregiver, number of siblings, number of hours of sleep in a day, number of hours spent watching television or videos prior to age 3, time spent indoors prior to age 3, absenteeism from school, and use of a nanny to care for the child) and to the caregiver (education level, profession, level of consanguinity using the phylogram method). In addition to these questions, caregivers in the AG were asked specific questions around maternal concern and considerations in respect to the future of their children and the specialized services they receive.
Results
Children in the autism group spent more time indoors, watching television, or sleeping than children in the non-autism group. Only around 40% of caregivers in the autism group said they would encourage their child to get married and become a parent when s/he grows up. A number of caregivers of children with autism frequently utilize specialized rehabilitation services; others did express their needs for these services and made comments about having to wait a long time before they were provided with some of the services. Religious faith helped caregivers in accepting having a child with autism. General health-related quality of life did not differ significantly between the caregivers of the two groups, although mental health was consistently poorer in the autism group of caregivers.
Conclusions
The study draws attention to the concerns of the families of children with autism and their expectations about the future of their children. The findings can be used by policy makers in planning services to support these families in Qatar.
doi:10.1186/1756-0500-5-290
PMCID: PMC3392732  PMID: 22695064
Autism; Qatar; Caregivers; Pessimism; Rehabilitation services; Faith
18.  Another Baby? Father Involvement and Childbearing in Fragile Families 
An historic number of women in the US have children outside of marriage, and with more than one father, yet little research has examined the association between family process and women’s childbearing decisions. Using a subsample of unmarried women from the Fragile Families and Child Wellbeing Study (N=2028), a study of primarily low-income unmarried parents, we conducted discrete-time survival analysis models to predict whether women had another child with the focal child’s father (same-father birth) or with a new father (new-father birth). Father involvement was measured by engagement, indirect care, accessibility, and financial support. Overall, mothers who reported greater engagement and indirect care from the focal child’s father were more likely to have a same-father birth even when he was not living in her home, and were also less likely to have a new-father birth. Further, mothers who reported greater accessibility and stable financial support from the focal child’s nonresident father were also less likely to have a new-father birth. One pathway through which this may have occurred was that single mothers who perceived less indirect care and accessibility from the focal child’s nonresident father were more likely to begin new romantic relationships. Indeed, whether or not the mother had a new romantic partner partially mediated the association between indirect care and a same-father birth, and fully mediated the association between accessibility and a new-father birth, suggesting that one pathway linking father involvement to a new-father birth was through maternal repartnering. Clinical and policy implications are discussed.
doi:10.1037/a0030715
PMCID: PMC3568527  PMID: 23244460
father involvement; childbearing; repartnering; multipartner fertility; nonmarital fertility
19.  ‘Deep down in their heart, they wish they could be given some incentives’: a qualitative study on the changing roles and relations of care among home-based caregivers in Zambia 
Background
Across Sub-Saharan Africa, the roll-out of antiretroviral treatment (ART) has contributed to shifting HIV care towards the management of a chronic health condition. While the balance of professional and lay tasks in HIV caregiving has been significantly altered due to changing skills requirements and task-shifting initiatives, little attention has been given to the effects of these changes on health workers’ motivation and existing care relations.
Methods
This paper draws on a cross-sectional, qualitative study that explored changes in home-based care (HBC) in the light of widespread ART rollout in the Lusaka and Kabwe districts of Zambia. Methods included observation of HBC daily activities, key informant interviews with programme staff from three local HBC organisations (n = 17) and ART clinic staff (n = 8), as well as in-depth interviews with home-based caregivers (n = 48) and HBC clients (n = 31).
Results
Since the roll-out of ART, home-based caregivers spend less time on hands-on physical care and support in the household, and are increasingly involved in specialised tasks supporting their clients’ access and adherence to ART. Despite their pride in gaining technical care skills, caregivers lament their lack of formal recognition through training, remuneration or mobility within the health system. Care relations within homes have also been altered as caregivers’ newly acquired functions of monitoring their clients while on ART are met with some ambivalence. Caregivers are under pressure to meet clients and their families’ demands, although they are no longer able to provide material support formerly associated with donor funding for HBC.
Conclusions
As their responsibilities and working environments are rapidly evolving, caregivers’ motivations are changing. It is essential to identify and address the growing tensions between an idealized rhetoric of altruistic volunteerism in home-based care, and the realities of lay worker deployment in HIV care interventions that not only shift tasks, but transform social and professional relations in ways that may profoundly influence caregivers’ motivation and quality of care.
doi:10.1186/s12913-015-0685-7
PMCID: PMC4324023  PMID: 25627203
Home-based care; Community health workers; HIV; Motivation; Zambia
20.  Viewing Low-Income Fathers’ Ties to Families through a Cultural Lens: Insights for Research and Policy 
Policy makers have become increasingly interested in addressing the cultural dimensions of child support, “responsible fatherhood,” and marriage in poor communities. However, policy studies have primarily focused on identifying economic determinants of these issues, with a substantial amount of variation in their statistical models left unexplained. This article draws on in-depth interviews the author conducted with disadvantaged mothers and fathers to illustrate how a systematic investigation into the meaning of low-income men’s ties to families may fill in or provide alternative explanations for some important questions related to paternal involvement. In particular, it suggests that analyzing fathers’ relationships through a cultural lens may not only reveal new information about the meaning of their emotional involvement, informal support, care of children, and conflicts with mothers which future policy studies should consider but may also inform policy initiatives by reducing the risk that they will be misdirected or have unintended consequences for poor families.
doi:10.1177/0002716209357147
PMCID: PMC3103135  PMID: 21625346
child support; cultural analysis; father involvement; low-income fathers; marriage; responsible fatherhood; union transitions
21.  Pregnancy Weight Gain and Childhood Body Weight: A Within-Family Comparison 
PLoS Medicine  2013;10(10):e1001521.
David Ludwig and colleagues examine the within-family relationship between pregnancy weight gain and the offspring's childhood weight gain, thereby reducing the influence of genes and environment.
Please see later in the article for the Editors' Summary
Background
Excessive pregnancy weight gain is associated with obesity in the offspring, but this relationship may be confounded by genetic and other shared influences. We aimed to examine the association of pregnancy weight gain with body mass index (BMI) in the offspring, using a within-family design to minimize confounding.
Methods and Findings
In this population-based cohort study, we matched records of all live births in Arkansas with state-mandated data on childhood BMI collected in public schools (from August 18, 2003 to June 2, 2011). The cohort included 42,133 women who had more than one singleton pregnancy and their 91,045 offspring. We examined how differences in weight gain that occurred during two or more pregnancies for each woman predicted her children's BMI and odds ratio (OR) of being overweight or obese (BMI≥85th percentile) at a mean age of 11.9 years, using a within-family design. For every additional kg of pregnancy weight gain, childhood BMI increased by 0.0220 (95% CI 0.0134–0.0306, p<0.0001) and the OR of overweight/obesity increased by 1.007 (CI 1.003–1.012, p = 0.0008). Variations in pregnancy weight gain accounted for a 0.43 kg/m2 difference in childhood BMI. After adjustment for birth weight, the association of pregnancy weight gain with childhood BMI was attenuated but remained statistically significant (0.0143 kg/m2 per kg of pregnancy weight gain, CI 0.0057–0.0229, p = 0.0007).
Conclusions
High pregnancy weight gain is associated with increased body weight of the offspring in childhood, and this effect is only partially mediated through higher birth weight. Translation of these findings to public health obesity prevention requires additional study.
Please see later in the article for the Editors' Summary
Editors' Summary
Background
Childhood obesity has become a worldwide epidemic. For example, in the United States, the number of obese children has more than doubled in the past 30 years. 7% of American children aged 6–11 years were obese in 1980, compared to nearly 18% in 2010. Because of the rising levels of obesity, the current generation of children may have a shorter life span than their parents for the first time in 200 years.
Childhood obesity has both immediate and long-term effects on health. The initial problems are usually psychological. Obese children often experience discrimination, leading to low self-esteem and depression. Their physical health also suffers. They are more likely to be at risk of cardiovascular disease from high cholesterol and high blood pressure. They may also develop pre-diabetes or diabetes type II. In the long-term, obese children tend to become obese adults, putting them at risk of premature death from stroke, heart disease, or cancer.
There are many factors that lead to childhood obesity and they often act in combination. A major risk factor, especially for younger children, is having at least one obese parent. The challenge lies in unravelling the complex links between the genetic and environmental factors that are likely to be involved.
Why Was This Study Done?
Several studies have shown that a child's weight is influenced by his/her mother's weight before pregnancy and her weight gain during pregnancy. An obese mother, or a mother who puts on more pregnancy weight than average, is more likely to have an obese child.
One explanation for the effects of pregnancy weight gain is that the mother's overeating directly affects the baby's development. It may change the baby's brain and metabolism in such a way as to increase the child's long-term risk of obesity. Animal studies have confirmed that the offspring of overfed rats show these kinds of physiological changes. However, another possible explanation is that mother and baby share a similar genetic make-up and environment so that a child becomes obese from inheriting genetic risk factors, and growing up in a household where being overweight is the norm.
The studies in humans that have been carried out to date have not been able to distinguish between these explanations. Some have given conflicting results. The aim of this study was therefore to look for evidence of links between pregnancy weight gain and children's weight, using an approach that would separate the impact of genetic and environmental factors from a direct effect on the developing baby.
What Did the Researchers Do and Find?
The researchers examined data from the population of the US state of Arkansas recorded between 2003 and 2011. They looked at the health records of over 42,000 women who had given birth to more than one child during this period. This gave them information about how much weight the women had gained during each of their pregnancies. The researchers also looked at the school records of the children, over 91,000 in total, which included the children's body mass index (BMI, which factors in both height and weight). They analyzed the data to see if there was a link between the mothers' pregnancy weight gain and the child's BMI at around 12 years of age. Most importantly, they looked at these links within families, comparing children born to the same mother. The rationale for this approach was that these children would share a similar genetic make-up and would have grown up in similar environments. By taking genetics and environment into account in this manner, any remaining evidence of an impact of pregnancy weight gain on the children's BMI would have to be explained by other factors.
The results showed that the amount of weight each mother gained in pregnancy predicted her children's BMI and the likelihood of her children being overweight or obese. For every additional kg the mother gained during pregnancy, the children's BMI increased by 0.022. The children of mothers who put on the most weight had a BMI that was on average 0.43 higher than the children whose mothers had put on the least weight.
The study leaves some questions unanswered, including whether the mother's weight before pregnancy makes a difference to their children's BMI. The researchers were not able to obtain these measurements, nor the weight of the fathers. There may have also been other factors that weren't measured that might explain the links that were found.
What Do These Findings Mean?
This study shows that mothers who gain excessive weight during pregnancy increase the risk of their child becoming obese. This appears to be partly due to a direct effect on the developing baby.
These results represent a significant public health concern, even though the impact on an individual basis is relatively small. They could contribute to several hundred thousand cases of childhood obesity worldwide. Importantly, they also suggest that some cases could be prevented by measures to limit excessive weight gain during pregnancy. Such an approach could prove effective, as most mothers will not want to damage their child's health, and might therefore be highly motivated to change their behavior. However, because inadequate weight gain during pregnancy can also adversely affect the developing fetus, it will be essential for women to receive clear information about what constitutes optimal weight gain during pregnancy.
Additional Information
Please access these websites via the online version of this summary at http://dx.doi.org/10.1371/journal.pmed.1001521.
The US Centers for Disease Control and Prevention provide Childhood Obesity Facts
The UK National Health Service article “How much weight will I put on during my pregnancy?” provides information on pregnancy and weight gain and links to related resources
doi:10.1371/journal.pmed.1001521
PMCID: PMC3794857  PMID: 24130460
22.  Supporting children to adhere to anti-retroviral therapy in urban Malawi: multi method insights 
BMC Pediatrics  2009;9:45.
Background
Ensuring good adherence is critical to the success of anti-retroviral treatment (ART). However, in resource-poor contexts, where paediatric HIV burden is high there has been limited progress in developing or adapting tools to support adherence for HIV-infected children on ART and their caregivers. We conducted formative research to assess children's adherence and to explore the knowledge, perceptions and attitudes of caregivers towards children's treatment.
Methods
All children starting ART between September 2002 and January 2004 (when ART was at cost in Malawi) were observed for at least 6 months on ART. Their adherence was assessed quantitatively by asking caregivers of children about missed ART doses during the previous 3 days at monthly visits. Attendance to clinic appointments was also monitored. In June and July 2004, four focus group discussions, each with 6 to 8 caregivers, and 5 critical incident narratives were conducted to provide complementary contextual data on caregivers' experiences on the challenges to and opportunities of paediatric ART adherence.
Results
We followed prospectively 47 children who started ART between 8 months and 12 years of age over a median time on ART of 33 weeks (2–91 weeks). 72% (34/47) never missed a single dose according to caregivers' report and 82% (327/401) of clinic visits were either as scheduled, or before or within 1 week after the scheduled appointment. Caregivers were generally knowledgeable about ART and motivated to support children to adhere to treatment despite facing multiple challenges. Caregivers were particularly motivated by seeing children begin to get better; but faced challenges in meeting the costs of medicine and transport, waiting times in clinic, stock outs and remembering to support children to adhere in the face of multiple responsibilities.
Conclusion
In the era of rapid scale-up of treatment for children there is need for holistic support strategies that focus on the child, the caregiver and the health worker and which are situated within the reality of fragile health systems. The findings highlight the need for cost-free and less complex paediatric ART regimes and culturally appropriate tools to support children's adherence.
doi:10.1186/1471-2431-9-45
PMCID: PMC2717958  PMID: 19602251
23.  Fathers and HIV: considerations for families 
Background
Fathers are intricately bound up in all aspects of family life. This review examines fathers in the presence of HIV: from desire for a child, through conception issues, to a summary of the knowledge base on fathers within families affected by HIV.
Methods
A mixed-methods approach is used, given the scarcity of literature. A review is provided on paternal and male factors in relation to the desire for a child, HIV testing in pregnancy, fatherhood and conception, fatherhood and drug use, paternal support and disengagement, fatherhood and men who have sex with men (MSM), and paternal effects on child development in the presence of HIV. Literature-based reviews and systematic review techniques are used to access available data Primary data are reported on the issue of parenting for men who have sex with men.
Results
Men with HIV desire fatherhood. This is established in studies from numerous countries, although fatherhood desires may be lower for HIV-positive men than HIV-negative men. Couples do not always agree, and in some studies, male desires for a child are greater than those of their female partners. Despite reduced fertility, support and services, many proceed to parenting, whether in seroconcordant or serodiscordant relationships. There is growing knowledge about fertility options to reduce transmission risk to uninfected partners and to offspring.
Within the HIV field, there is limited research on fathering and fatherhood desires in a number of difficult-to-reach groups. There are, however, specific considerations for men who have sex with men and those affected by drug use. Conception in the presence of HIV needs to be managed and informed to reduce the risk of infection to partners and children. Further, paternal support plays a role in maternal management.
Conclusions
Strategies to improve HIV testing of fathers are needed. Paternal death has a negative impact on child development and paternal survival is protective. It is important to understand fathers and fathering and to approach childbirth from a family perspective.
doi:10.1186/1758-2652-13-S2-S4
PMCID: PMC2890973  PMID: 20573286
24.  Paid Caregiver Motivation, Work Conditions, and Falls among Senior Clients 
The purpose of this study was to determine the motivation of paid non-familial caregivers of seniors, understand more about their work conditions, and identify any links to negative outcomes among their senior clients. Ninety-eight paid caregivers (eighty-five female and thirteen male), recruited from multiple sites (i.e. senior centers, shopping malls, local parks, lobbies of senior apartments, caregiver agency meetings) completed face-to-face questionnaires and semi-structured interviews. We found that 60.7% of participants chose to become a caregiver because they enjoyed being with seniors while 31.7% were unable to obtain other work, and 8.2% stated it was a prerequisite to a different health related occupation. Caregivers stated that the most challenging conditions of their work were physical lifting (24.5%), behavioral and psychological symptoms of dementia (24.5%), senior depression/mood changes (18.4%), attachment with impending death (8.2%), missing injuries to client (5.1%), lack of sleep (4.1%), and lack of connection with outside world (3.1%). Caregivers who reported that the best part of their job was the salary, flexible hours, and ease of work were significantly more likely to have clients who fell and fractured a bone than those who enjoyed being with seniors (job characteristics, 62.5% vs. senior enjoyment, 25.6%; p<0.004). We concluded that in pursuing their occupation, paid caregivers are motivated commonly by their love of seniors and also by their lack of other job opportunities. Paid caregivers frequently face challenging work conditions. When seeking a caregiver for a senior, motivation of the caregiver should be considered when hiring.
doi:10.1016/j.archger.2012.01.008
PMCID: PMC3753010  PMID: 22360830
Caregivers; Caregiver Burden; Motivation; Bone fractures
25.  Community perceptions of malaria and vaccines in the South Coast and Busia regions of Kenya 
Malaria Journal  2011;10:147.
Background
Malaria is a leading cause of morbidity and mortality in children younger than 5 years in Kenya. Within the context of planning for a vaccine to be used alongside existing malaria control methods, this study explores sociocultural and health communications issues among individuals who are responsible for or influence decisions on childhood vaccination at the community level.
Methods
This qualitative study was conducted in two malaria-endemic regions of Kenya--South Coast and Busia. Participant selection was purposive and criterion based. A total of 20 focus group discussions, 22 in-depth interviews, and 18 exit interviews were conducted.
Results
Participants understand that malaria is a serious problem that no single tool can defeat. Communities would welcome a malaria vaccine, although they would have questions and concerns about the intervention. While support for local child immunization programs exists, limited understanding about vaccines and what they do is evident among younger and older people, particularly men. Even as health care providers are frustrated when parents do not have their children vaccinated, some parents have concerns about access to and the quality of vaccination services. Some women, including older mothers and those less economically privileged, see themselves as the focus of health workers' negative comments associated with either their parenting choices or their children's appearance. In general, parents and caregivers weigh several factors--such as personal opportunity costs, resource constraints, and perceived benefits--when deciding whether or not to have their children vaccinated, and the decision often is influenced by a network of people, including community leaders and health workers.
Conclusions
The study raises issues that should inform a communications strategy and guide policy decisions within Kenya on eventual malaria vaccine introduction. Unlike the current practice, where health education on child welfare and immunization focuses on women, the communications strategy should equally target men and women in ways that are appropriate for each gender. It should involve influential community members and provide needed information and reassurances about immunization. Efforts also should be made to address concerns about the quality of immunization services--including health workers' interpersonal communication skills.
doi:10.1186/1475-2875-10-147
PMCID: PMC3120733  PMID: 21624117

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