Parent and child experiences of childhood cancer : an interpretative phenomenological analysis approach

A diagnosis of cancer represents a significant crisis for the child and their family. As the treatment for childhood cancer has improved dramatically over the past three decades, most children diagnosed with cancer today survive this illness. However, it is still an illness which severely disrupts the lifestyle and typical functioning of the family unit. Most treatments for cancer involve lengthy hospital stays, the endurance of painful procedures and harsh side effects. Research has confirmed that to manage and adapt to such a crisis, families must undertake measures which assist their adjustment. Variables such as level of family support, quality of parents’ marital relationship, coping of other family members, lack of other concurrent stresses and open communication within the family have been identified as influences on how well families adjust to a diagnosis of childhood cancer. Theoretical frameworks such as the Resiliency Model of Family Adjustment and Adaptation (McCubbin and McCubbin, 1993, 1996) and the Stress and Coping Model by Lazarus and Folkman (1984) have been used to explain how families and individuals adapt to crises or adverse circumstances. Developmental theories have also been posed to account for how children come to understand and learn about the concept of illness. However more descriptive information about how families and children in particular, experience and manage a diagnosis of cancer is still needed. There are still many unanswered questions surrounding how a child adapts to, understands and makes meaning from having a life-threatening illness. As a result, developing an understanding of the impact that such a serious illness has on the child and their family is crucial. A new approach to examining childhood illness such as cancer is currently underway which allows for a greater understanding of the experience of childhood cancer to be achieved. This new approach invites a phenomenological method to investigate the perspectives of those affected by childhood cancer. In the current study 9 families in which there was a diagnosis of childhood cancer were interviewed twice over a 12 month period. Using the qualitative methodology of Interpretative Phenomenological Analysis (IPA) a semi-structured interview was used to explicate the experience of childhood cancer from both the parent and child’s perspectives. A number of quantitative measures were also administered to gather specific information on the demographics of the sample population. The results of this study revealed a number of pertinent areas which need to be considered when treating such families. More importantly experiences were explicated which revealed vital phenomena that needs to be added to extend current theoretical frameworks. Parents identified the time of the diagnosis as the hardest part of their entire experience. Parents experienced an internal struggle when they were forced to come to the realization that they were not able to help their child get well. Families demonstrated an enormous ability to develop a new lifestyle which accommodated the needs of the sick child, as the sick child became the focus of their lives. Regarding the children, many of them accepted their diagnosis without complaint or question, and they were able to recognise and appreciate the support they received. Physical pain was definitely a component of the children’s experience however the emotional strain of loss of peer contact seemed just as severe. Changes over time were also noted as both parental and child experiences were often pertinent to the stage of treatment the child had reached. The approach used in this study allowed for rich and intimate detail about a sensitive issue to be revealed. Such an approach also allowed for the experience of childhood cancer on parents and the children to be more fully realised. Only now can a comprehensive and sensitive medical and psychosocial approach to the child and family be developed. For example, families may benefit from extra support at the time of diagnosis as this was identified as one of the most difficult periods. Parents may also require counselling support in coming to terms with their lack of ability to help their child heal. Given the ease at which children accepted their diagnosis, we need to question whether children are more receptive to adversity. Yet the emotional struggle children battled as a result of their illness also needs to be addressed.

Caregiving experience and its influencing factors : rural versus urban adult-child caregivers caring for parents with dementia in China

Background: It is predicted that China will have the largest number of cases of dementia in the world by 2025 (Ferri et al., 2005). Research has demonstrated that caring for family members with dementia can be a long-term, burdensome activity resulting in physical and emotional distress and impairment (Pinquart & Sorensen, 2003b). The establishment of family caregiver supportive services in China can be considered urgent; and the knowledge of the caregiving experience and related influencing factors is necessary to inform such services. Nevertheless, in the context of rapid demographic and socioeconomic change, the impact of caregiving for rural and urban Chinese adult-child caregivers may be different, and different needs in supportive services may therefore be expected. Objectives: The aims of this research were 1) to examine the potential differences existing in the caregiving experience between rural and urban adult-child caregivers caring for parents with dementia in China; and 2) to examine the potential differences existing in the influencing factors of the caregiving experience for rural as compared with urban adult-child caregivers caring for parents with dementia in China. Based on the literature review and Kramer.s (1997) caregiver adaptation model, six concepts and their relationships of caregiving experience were studied: severity of the care receivers. dementia, caregivers. appraisal of role strain and role gain, negative and positive well-being outcomes, and health related quality of life. Furthermore, four influencing factors (i.e., filial piety, social support, resilience, and personal mastery) were studied respectively. Methods: A cross-sectional, comparative design was used to achieve the aims of the study. A questionnaire, which was designed based on the literature review and on Kramer.s (1997) caregiver adaptation model, was completed by 401 adult-child caregivers caring for their parents with dementia from the mental health outpatient departments in five hospitals in the Yunnan province, P.R. China. Structural equation modelling (SEM) was employed as the main statistical technique for data analyses. Other statistical techniques (e.g., t-tests and Chi-Square tests) were also conducted to compare the demographic characteristics and the measured variables between rural and urban groups. Results: For the first research aim, the results indicated that urban adult-child caregivers in China experienced significantly greater strain and negative well-being outcomes than their rural peers; whereas, the difference on the appraisal of role gain and positive outcomes was nonsignificant between the two groups. The results also indicated that the amounts of severity of care receivers. dementia and caregivers. health related quality of life do not have the same meanings between the two groups. Thus, the levels of these two concepts were not comparable between the rural and urban groups in this study. Moreover, the results also demonstrated that the negative direct effect of gain on negative outcomes in urban caregivers was stronger than that in rural caregivers, suggesting that the urban caregivers tended to use appraisal of role gain to protect themselves from negative well-being outcomes to a greater extent. In addition, the unexplained variance in strain in the urban group was significantly more than that in the rural group, suggesting that there were other unmeasured variables besides the severity of care receivers. dementia which would predict strain in urban caregivers compared with their rural peers. For the second research aim, the results demonstrated that rural adult-child caregivers reported a significantly higher level of filial piety and more social support than their urban counterparts, although the two groups did not significantly differ on the levels of their resilience and personal mastery. Furthermore, although the mediation effects of these four influencing factors on both positive and negative aspects remained constant across rural and urban adult-child caregivers, urban caregivers tended to be more effective in using personal mastery to protect themselves from role strain than rural caregivers, which in turn protects them more from the negative well-being outcomes than was the case with their rural peers. Conclusions: The study extends the application of Kramer.s caregiving adaptation process model (Kramer, 1997) to a sample of adult-child caregivers in China by demonstrating that both positive and negative aspects of caregiving may impact on the caregiver.s health related quality of life, suggesting that both aspects should be targeted in supportive interventions for Chinese family caregivers. Moreover, by demonstrating partial mediation effects, the study provides four influencing factors (i.e., filial piety, social support, resilience, and personal mastery) as specific targets for clinical interventions. Furthermore, the study found evidence that urban adult-child caregivers had more negative but similar positive experience compared to their rural peers, suggesting that the establishment of supportive services for urban caregivers may be more urgent at present stage in China. Additionally, since urban caregivers tended to use appraisal of role gain and personal mastery to protect themselves from negative well-being outcomes than rural caregivers to a greater extend, interventions targeting utility of gain or/and personal mastery to decrease negative outcomes might be more effective in urban caregivers than in rural caregivers. On the other hand, as cultural expectations and expression of filial piety tend to be more traditional in rural areas, interventions targeting filial piety could be more effective among rural caregivers. Last but not least, as rural adult-child caregivers have more existing natural social support than their urban counterparts, mobilising existing natural social support resources may be more beneficial for rural caregivers, whereas, formal supports (e.g., counselling services, support groups and adult day care centres) should be enhanced for urban caregivers.

Contributors to life satisfaction in parents of an adult child with Down syndrome

Aim: This study investigated: (1) concurrent relationships between measures of family life and parental satisfaction with life in parents of an adult with Down syndrome and (2) influence of early family functioning on current parental satisfaction. Method: Sixty-two families were interviewed using a semi-structured interview, and responded to a series of questionnaires related to family functioning when their child with Down syndrome was between 7 and 15 years. Fifteen years later parents were asked to provide data on their current situation, including mental health, and satisfaction and difficulties with respect to care-giving in relation to their adult child. Results: Over half the families provided data to the second phase of the study. Life circumstances were appreciably worse for a small group of families than had been the case 15 years previously; however, these changes were generally unrelated to their parenting role. Overall, parents reported experiencing satisfaction from their care-giving role and did not report high levels of difficulties emanating from this role. Conclusions: Most parents demonstrated good levels of personal functioning, although there was a small group for whom this was not the case. Earlier functioning did not make a strong contribution to current levels of life satisfaction.

Parent feeding interactions and practices during childhood cancer treatment: A qualitative investigation

In the general population it is evident that parent feeding practices can directly shape a child’s life long dietary intake. Young children undergoing childhood cancer treatment may experience feeding difficulties and limited food intake, due to the inherent side effects of their anti-cancer treatment. What is not clear is how these treatment side effects are influencing the parent–child feeding relationship during anti-cancer treatment. This retrospective qualitative study collected telephone based interview data from 38 parents of childhood cancer patients who had recently completed cancer treatment (child’s mean age: 6.98 years). Parents described a range of treatment side effects that impacted on their child’s ability to eat, often resulting in weight loss. Sixty-one percent of parents (n = 23) reported high levels of stress in regard to their child’s eating and weight loss during treatment. Parents reported stress, feelings of helplessness, and conflict and/or tension between parent and the child during feeding/eating interactions. Parents described using both positive and negative feeding practices, such as: pressuring their child to eat, threatening the insertion of a nasogastric feeding tube, encouraging the child to eat and providing home cooked meals in hospital. Results indicated that parent stress may lead to the use of coping strategies such as positive or negative feeding practices to entice their child to eat during cancer treatment. Future research is recommended to determine the implication of parent feeding practice on the long term diet quality and food preferences of childhood cancer survivors.

Associations between early shared music activities in the home and later child outcomes : findings from the Longitudinal Study of Australian Children

The benefits of early shared book reading between parents and children have long been established,yet the same cannot be said for early shared music activities in the home. This study investigated the parent–child home music activities in a sample of 3031 Australian children participating in Growing Up in Australia: The Longitudinal Study of Australian Children (LSAC) study. Frequency of shared home music activities was reported by parents when children were 2–3 years and a range of social, emotional,and cognitive outcomes were measured by parent and teacher report and direct testing two years later when children were 4–5 years old. A series of regression analyses (controlling for a set of important socio-demographic variables) found frequency of shared home music activities to have a small significant partial association with measures of children’s vocabulary, numeracy, attentional and emotional regulation, and prosocial skills. We then included both book reading and shared home music activities in the same models and found that frequency of shared home music activities maintained small partial associations with measures of prosocial skills, attentional regulation, and numeracy. Our findings suggest there may be a role for parent-child home music activities in supporting children’s development.

Childhood sexual abuse and adult sexual dysfunction: Response to commentary by Rind and Tromovitch (2007)

Rind and Tromovitch (2007) raised four concerns relating to our article (Najman, Dunne, Purdie, Boyle, & Coxeter, 2005. Archives of Sexual Behavior, 34, 517-526.) which suggested a causal association between childhood sexual abuse (CSA) and adult sexual dysfunction. We consider each of these concerns: magnitude of effect, cause and effect, confounding, and measurement error. We suggest that, while the concerns they raise represent legitimate reservations about the validity of our findings, on balance the available evidence indicates an association between CSA and sexual dysfunction that is of "moderate" magnitude, probably causal, and unlikely to be a consequence of confounding or measurement error.

Gender differences in children's classroom behaviour and teacher-child relationships in early childhood: An Australian Study

Background: In the early school years, children need positive attitudes to school and experiences that promote academic and social competence. Positive relationships between children and teachers make a significant contribution to school achievement and social competence. Girls are more likely to display positive classroom behaviours and positive approaches to learning than boys. Gender differences have also been noted in teacher-child relationships. This study investigated the relationship between gender differences in classroom behaviour and gender differences in teacher-child relationships in the early years. Method: Data were drawn from The Longitudinal Study of Australian Children (LSAC). LSAC is a cross-sequential cohort study funded by the Australian Government. In these analyses, Wave 1 (2004) and Wave 2 (2006) data for 4464 children in the Kindergarten Cohort were used. Children, at Wave 2, were in the early years of formal school. They had a mean age of 6.8 years (SD= 0.24). Measures included a 6-item measure of Approaches to Learning (task persistence, independence) and teacher ratings on the SDQ. Teachers rated their relationships with children on the short form of the STRS. Results: Girls were found to have more positive relationships with their teachers and to display more positive classroom behaviours than boys. Teachers described their relationships with boys as less close than their relationships with girls and rated girls as displaying more positive approaches to learning and fewer problem behaviours than boys. Positive teacher – child relationships were significantly related to more positive classroom behaviours. The quality of the teacher-child relationship at time 1 (Wave 1) was the best predictor of the quality of the teacher-child relationship at time 2 (Wave 2). Conclusions: Findings highlight the importance of developing positive learning related classroom behaviours in understanding successful school transition and the key role played by early positive teacher-child relationships in promoting school adjustment.

Determinants of infant and young child feeding practices in Bangladesh: Secondary data analysis of Demographic and Health Survey 2004

BACKGROUND: In Bangladesh, poor infant and young child feeding practices are contributing to the burden of infectious diseases and malnutrition. Objective. To estimate the determinants of selected feeding practices and key indicators of breastfeeding and complementary feeding in Bangladesh. METHODS: The sample included 2482 children aged 0 to 23 months from the Bangladesh Demographic and Health Survey of 2004. The World Health Organization (WHO)-recommended infant and young child feeding indicators were estimated, and selected feeding indicators were examined against a set of individual-, household-, and community-level variables using univariate and multivariate analyses. RESULTS: Only 27.5% of mothers initiated breastfeeding within the first hour after birth, 99.9% had ever breastfed their infants, 97.3% were currently breastfeeding, and 22.4% were currently bottle-feeding. Among infants under 6 months of age, 42.5% were exclusively breastfed, and among those aged 6 to 9 months, 62.3% received complementary foods in addition to breastmilk. Among the risk factors for an infant not being exclusively breastfed were higher socioeconomic status, higher maternal education, and living in the Dhaka region. Higher birth order and female sex were associated with increased rates of exclusive breastfeeding of infants under 6 months of age. The risk factors for bottle-feeding were similar and included having a partner with a higher educational level (OR = 2.17), older maternal age (OR for age > or = 35 years = 2.32), and being in the upper wealth quintiles (OR for the richest = 3.43). Urban mothers were at higher risk for not initiating breastfeeding within the first hour after birth (OR = 1.61). Those who made three to six visits to the antenatal clinic were at lower risk for not initiating breastfeeding within the first hour (OR = 0.61). The rate of initiating breastfeeding within the first hour was higher in mothers from richer households (OR = 0.37). CONCLUSIONS: Most breastfeeding indicators in Bangladesh were below acceptable levels. Breastfeeding promotion programs in Bangladesh need nationwide application because of the low rates of appropriate infant feeding indicators, but they should also target women who have the main risk factors, i.e., working mothers living in urban areas (particularly in Dhaka).

Determinants of infant and young child feeding practices in Sri Lanka : secondary data analysis of demographic and health survey 2000

Background: Poor feeding practices in early childhood contribute to the burden of childhood malnutrition and morbidity. Objective: To estimate the key indicators of breastfeeding and complementary feeding and the determinants of selected feeding practices in Sri Lanka. Methods: The sample consisted of 1,127 children aged 0 to 23 months from the Sri Lanka Demographic and Health Survey 2000. The key infant feeding indicators were estimated and selected indicators were examined against a set of individual-, household-, and community- level variables using univariate and multivariate analyses. Results: Breastfeeding was initiated within the first hour after birth in 56.3% of infants, 99.7% had ever been breastfed, 85.0% were currently being breastfed, and 27.2% were being bottle-fed. Of infants under 6 months of age, 60.6% were fully breastfed, and of those aged 6 to 9 months, 93.4% received complementary foods. The likelihood of not initiating breastfeeding within the first hour after birth was higher for mothers who underwent cesarean delivery (OR = 3.23) and those who were not visited by a Public Health Midwife at home during pregnancy (OR = 1.81). The rate of full breastfeeding was significantly lower among mothers who did not receive postnatal home visits by a Public Health Midwife. Bottlefeeding rates were higher among infants whose mothers had ever been employed (OR = 1.86), lived in a metropolitan area (OR = 3.99), or lived in the South-Central Hill country (OR = 3.11) and were lower among infants of mothers with secondary education (OR = 0.27). Infants from the urban (OR = 8.06) and tea estate (OR = 12.63) sectors were less likely to receive timely complementary feeding than rural infants. Conclusions: Antenatal and postnatal contacts with Public Health Midwives were associated with improved breastfeeding practices. Breastfeeding promotion strategies should specifically focus on the estate and urban or metropolitan communities.

Determinants of infant and young child feeding practices in Nepal : secondary data analysis of demographic and health survey 2006

Background: Childhood undernutrition and mortality are high in Nepal, and therefore interventions on infant and young child feeding practices deserve high priority. Objective. To estimate infant and young child feeding indicators and the determinants of selected feeding practices. Methods: The sample consisted of 1,906 children aged 0 to 23 months from the Demographic and Health Survey 2006. Selected indicators were examined against a set of variables using univariate and multivariate analyses. Results. Breastfeeding was initiated within the first hour after birth in 35.4% of children, 99.5% were ever breastfed, 98.1% were currently breastfed, and 3.5% were bottle-fed. The rate of exclusive breastfeeding among infants under 6 months of age was 53.1%, and the rate of timely complementary feeding among those 6 to 9 months of age was 74.7%. Mothers who made antenatal clinic visits were at a higher risk for no exclusive breastfeeding than those who made no visits. Mothers who lived in the mountains were more likely to initiate breastfeeding within 1 hour after birth and to introduce complementary feeding at 6 to 9 months of age, but less likely to exclusively breastfeed. Cesarean deliveries were associated with delay in timely initiation of breastfeeding. Higher rates of complementary feeding at 6 to 9 months were also associated with mothers with better education and those above 35 years of age. Risk factors for bottle-feeding included living in urban areas and births attended by trained health personnel. Conclusions: Most breastfeeding indicators in Nepal are below the expected levels to achieve a substantial reduction in child mortality. Breastfeeding promotion strategies should specifically target mothers who have more contact with the health care delivery system, while programs targeting the entire community should be continued.

Across-country comparisons of selected infant and young child feeding indicators and associated factors in four South Asian countries

Background: Information on infant and young child feeding is widely available in Demographic and Health Surveys and National Family Health Surveys for countries in South Asia; however, infant and young child feeding indicators from these surveys have not been compared between countries in the region. Objective. To compare the key indicators of breastfeeding and complementary feeding and their determinants in children under 24 months of age between four South Asian countries. Methods: We selected data sets from the Bangladesh Demographic and Health Survey 2004, the India National Family Health Survey (NFHS-03) 2005–06, the Nepal Demographic and Health Survey 2006, and the Sri Lanka 2000 Demographic and Health Survey. Infant feeding indicators were estimated according to the key World Health Organization indicators. Results: Exclusive breastfeeding rates were 42.5% in Bangladesh, 46.4% in India, and 53.1% in Nepal. The rate of full breastfeeding ranged between 60.6% and 73.9%. There were no factors consistently associated with the rate of no exclusive breastfeeding across countries. Utilization of health services (more antenatal clinic visits) was associated with higher rates of exclusive breastfeeding in India but lower rates in Nepal. Delivery at a health facility was a negative determinant of exclusive breastfeeding in India. Postnatal contacts by Public Health Midwives were a positive factor in Sri Lanka. A considerable proportion of infants under 6 months of age had been given plain water, juices, or other nonmilk liquids. The rate of timely first suckling ranged from 23.5% in India to 56.3% in Sri Lanka. Delivery by cesarean section was found to be a consistent negative factor that delayed initiation of breastfeeding. Nepal reported the lowest bottle-feeding rate of 3.5%. Socioeconomically privileged mothers were found to have higher bottlefeeding rates in most countries. Conclusions: Infant and young child feeding practices in the South Asia region have not reached the expected levels that are required to achieve a substantial reduction in child mortality. The countries with lower rates of exclusive breastfeeding have a great potential to improve the rates by preventing infants from receiving water and water-based or other nonmilk liquids during the first 6 months of life.