care, health and development Child: Letter to the Editor bs_bs_banner
doi:10.1111/cch.12120
Children of chronically ill parents: the silence of research Dear editor, Experiences that occur in childhood, and their impact on subsequent brain and biological development, establish a foundation for children’s future competence, coping skills, health and success in the labour market as adults (Hertzman et al. 2004). Families are the primary source of experience for most children. Because of the rapidity of developmental changes in the early years, family factors may be the most stable predictors of later child developmental status. In Western societies, 4–12% of children and adolescents live in households where a parent has a chronic illness (Barkmann et al. 2007). Increasingly, evidence suggests that having a parent with a chronic illness puts children at a higher risk of developing emotional and behavioural difficulties because of changes in parent–child interactions (Sieh et al. 2010). However, while a great deal of research has been conducted on the ill child, relatively little is known about the children of chronically ill parents. Most work to date has focused on cancer patients, specifically mothers with breast cancer and their adolescent offspring (Barkmann et al. 2007). Data on other chronic illnesses, younger children and ill fathers are lacking. This commentary highlights the need to conduct population-based studies to illuminate the impact of parental health issues on children’s development, and open avenues for early identification and potential preventive interventions that could lead to improved outcomes for children. Research looking at patients with multiple sclerosis (MS) has shown that because of an array of potential health effects, including physical and cognitive disability, and caregiving tasks imposed on the family members, MS can cause considerable stress and anxiety on patients and their families (Bogosian et al. 2010). As the number, intensity and duration of stressors increase, the child is likely to have more difficulty rebounding or resuming his or her developmental trajectory in emotional and interpersonal domains and experience more acute infection, injuries or psychopathological morbidities (Boyce 1996). The impact of those stressors may not be fully realized until adolescence years, which, in some cases might be too late to intervene to reduce or mitigate the toxic stress experienced (Boyce et al. 2012). Recent studies looking at adolescents with parents affected by chronic medical condition found that these youth are subject to an increased risk for anxious and depressive
© 2013 John Wiley & Sons Ltd
behaviour, adverse caregiving characteristics, stress and a low school performance (Sieh et al. 2012). Nevertheless, not all such experiences result in negative impacts: studies have associated parental chronic illness, such as MS, with positive outcomes (Friedemann & Tubergen 1987). Additionally, in contrast to the findings above, some studies found no statistically significant differences in psychosocial adjustment of children with a parent with chronic illness vs. ‘healthy parent’ (Olgas 1974). Although the few studies examining the impact of parental chronic disease on children’s development and health represent important first steps, many have serious methodological limitations, particularly exposure assessment and other potential sources of bias, such as failure to adjust for important demographic variables, lack of comparison group and suboptimal data collection. To the best of our knowledge, there is no prospective cohort study that is specifically designed to investigate the effects of parental chronic illness and disease-specific clinical factors on early developmental health, aside from issues of disease inheritance. There is an inconsistency of findings in the literature, and most studies have focused on older children, partly because objective data collection in early childhood is so challenging. To overcome many of the deficiencies raised above, we propose that population-based research is needed, by linking prospectively collected disease registry databases, for both mother and father with a chronic illness, together with retrospective data (e.g. through linkage of health, development and educationrelated databases) to populate a large study-specific data set of patients and their children. This type of design is feasible in jurisdictions that support large, population-based health and education-related databases where researchers have access to linked databases. Administrative health and education databases are population-based, accessible and cost-effective for research. Such linkage provides the best opportunity to use prospectively collected, unbiased data to investigate factors that support or undermine children’s health and development across the early life course. Also, by using highly objective, and wellvalidated measurement tools, findings of these studies would inform policy making for healthier communities, assisting in the development and evaluation of interventions to improve
753
754 Letter to the Editor
child and family-level outcomes. Lastly, from a political lens, it turns out that officials are not interested in what we know about ‘randomly sampled’ children. They are interested in what we know about their children – who fall under their jurisdiction (Hertzman 2010). As a results the more children we study, the greater the political and funding support there is for our work (Hertzman 2010). Now that the technological and ethical issues surrounding data linkages have been more fully developed, we believe that unique population-based linkages of the sort described here will lead to a better understanding of children’s pathways to healthy development, a critical step in the quest to improve outcomes among the children of the chronically ill. N. Razaz School of Population and Public Health University of British Columbia Vancouver BC Canada C. Hertzman School of Population and Public Health University of British Columbia Vancouver BC Canada R. A. Marrie Internal Medicine and Community Health Sciences University of Manitoba Winnipeg MB Canada H. Tremlett Department of Neurology University of British Columbia Vancouver BC Canada W. T. Boyce Division of Developmental-Behavioral Pediatrics, Department of Pediatrics University of California San Francisco, CA USA
© 2013 John Wiley & Sons Ltd, Child: care, health and development, 40, 5, 753–754
References Barkmann, C., Romer, G., Watson, M. & Schulte-Markwort, M. (2007) Parental physical illness as a risk for psychosocial maladjustment in children and adolescents: epidemiological findings from a national survey in Germany. Psychosomatics, 48, 476–481. Bogosian, A., Moss-Morris, R. & Hadwin, J. (2010) Psychosocial adjustment in children and adolescents with a parent with multiple sclerosis: a systematic review. Clinical Rehabilitation, 24, 789–801. Boyce, W. T. (1996) Biobehavioral reactivity and injuries in children and adolescents. Boyce, W. T., Sokolowski, M. B. & Robinson, G. E. (2012) Toward a new biology of social adversity. Proceedings of the National Academy of Sciences, 109, 17143–17148. Friedemann, M. L. & Tubergen, P. (1987) Multiple sclerosis and the family. Archives of Psychiatric Nursing, 1, 47–54. Hertzman, C. (2010) Bringing a population health perspective to early biodevelopment: an emerging approach. In: Nature and Nurture in Early Child Development (ed. D. P. Keating), pp. 217–245. Cambridge University Press, New York. Hertzman, C., Power, C., Matthews, S. & Manor, O. (2004) Child development as a determinant of health across the life course. Current Pediatrics, 14, 438–443. Olgas, M. (1974) The relationship between parents’ health status and body image of their children. Nursing Research, 23, 319–324. Sieh, D. S., Meijer, A. M., Oort, F. J., Visser-Meily, J. M. & Van der Leij, D. A. (2010) Problem behavior in children of chronically ill parents: a meta-analysis. Clinical Child and Family Psychology Review, 13, 384–397. Sieh, D. S., Visser-Meily, J. M., Oort, F. J. & Meijer, A. M. (2012) Risk factors for problem behavior in adolescents of parents with a chronic medical condition. European Child & Adolescent Psychiatry, 21, 459–471.
doi:10.1111/cch.12120
Children of chronically ill parents: the silence of research Dear editor, Experiences that occur in childhood, and their impact on subsequent brain and biological development, establish a foundation for children’s future competence, coping skills, health and success in the labour market as adults (Hertzman et al. 2004). Families are the primary source of experience for most children. Because of the rapidity of developmental changes in the early years, family factors may be the most stable predictors of later child developmental status. In Western societies, 4–12% of children and adolescents live in households where a parent has a chronic illness (Barkmann et al. 2007). Increasingly, evidence suggests that having a parent with a chronic illness puts children at a higher risk of developing emotional and behavioural difficulties because of changes in parent–child interactions (Sieh et al. 2010). However, while a great deal of research has been conducted on the ill child, relatively little is known about the children of chronically ill parents. Most work to date has focused on cancer patients, specifically mothers with breast cancer and their adolescent offspring (Barkmann et al. 2007). Data on other chronic illnesses, younger children and ill fathers are lacking. This commentary highlights the need to conduct population-based studies to illuminate the impact of parental health issues on children’s development, and open avenues for early identification and potential preventive interventions that could lead to improved outcomes for children. Research looking at patients with multiple sclerosis (MS) has shown that because of an array of potential health effects, including physical and cognitive disability, and caregiving tasks imposed on the family members, MS can cause considerable stress and anxiety on patients and their families (Bogosian et al. 2010). As the number, intensity and duration of stressors increase, the child is likely to have more difficulty rebounding or resuming his or her developmental trajectory in emotional and interpersonal domains and experience more acute infection, injuries or psychopathological morbidities (Boyce 1996). The impact of those stressors may not be fully realized until adolescence years, which, in some cases might be too late to intervene to reduce or mitigate the toxic stress experienced (Boyce et al. 2012). Recent studies looking at adolescents with parents affected by chronic medical condition found that these youth are subject to an increased risk for anxious and depressive
© 2013 John Wiley & Sons Ltd
behaviour, adverse caregiving characteristics, stress and a low school performance (Sieh et al. 2012). Nevertheless, not all such experiences result in negative impacts: studies have associated parental chronic illness, such as MS, with positive outcomes (Friedemann & Tubergen 1987). Additionally, in contrast to the findings above, some studies found no statistically significant differences in psychosocial adjustment of children with a parent with chronic illness vs. ‘healthy parent’ (Olgas 1974). Although the few studies examining the impact of parental chronic disease on children’s development and health represent important first steps, many have serious methodological limitations, particularly exposure assessment and other potential sources of bias, such as failure to adjust for important demographic variables, lack of comparison group and suboptimal data collection. To the best of our knowledge, there is no prospective cohort study that is specifically designed to investigate the effects of parental chronic illness and disease-specific clinical factors on early developmental health, aside from issues of disease inheritance. There is an inconsistency of findings in the literature, and most studies have focused on older children, partly because objective data collection in early childhood is so challenging. To overcome many of the deficiencies raised above, we propose that population-based research is needed, by linking prospectively collected disease registry databases, for both mother and father with a chronic illness, together with retrospective data (e.g. through linkage of health, development and educationrelated databases) to populate a large study-specific data set of patients and their children. This type of design is feasible in jurisdictions that support large, population-based health and education-related databases where researchers have access to linked databases. Administrative health and education databases are population-based, accessible and cost-effective for research. Such linkage provides the best opportunity to use prospectively collected, unbiased data to investigate factors that support or undermine children’s health and development across the early life course. Also, by using highly objective, and wellvalidated measurement tools, findings of these studies would inform policy making for healthier communities, assisting in the development and evaluation of interventions to improve
753
754 Letter to the Editor
child and family-level outcomes. Lastly, from a political lens, it turns out that officials are not interested in what we know about ‘randomly sampled’ children. They are interested in what we know about their children – who fall under their jurisdiction (Hertzman 2010). As a results the more children we study, the greater the political and funding support there is for our work (Hertzman 2010). Now that the technological and ethical issues surrounding data linkages have been more fully developed, we believe that unique population-based linkages of the sort described here will lead to a better understanding of children’s pathways to healthy development, a critical step in the quest to improve outcomes among the children of the chronically ill. N. Razaz School of Population and Public Health University of British Columbia Vancouver BC Canada C. Hertzman School of Population and Public Health University of British Columbia Vancouver BC Canada R. A. Marrie Internal Medicine and Community Health Sciences University of Manitoba Winnipeg MB Canada H. Tremlett Department of Neurology University of British Columbia Vancouver BC Canada W. T. Boyce Division of Developmental-Behavioral Pediatrics, Department of Pediatrics University of California San Francisco, CA USA
© 2013 John Wiley & Sons Ltd, Child: care, health and development, 40, 5, 753–754
References Barkmann, C., Romer, G., Watson, M. & Schulte-Markwort, M. (2007) Parental physical illness as a risk for psychosocial maladjustment in children and adolescents: epidemiological findings from a national survey in Germany. Psychosomatics, 48, 476–481. Bogosian, A., Moss-Morris, R. & Hadwin, J. (2010) Psychosocial adjustment in children and adolescents with a parent with multiple sclerosis: a systematic review. Clinical Rehabilitation, 24, 789–801. Boyce, W. T. (1996) Biobehavioral reactivity and injuries in children and adolescents. Boyce, W. T., Sokolowski, M. B. & Robinson, G. E. (2012) Toward a new biology of social adversity. Proceedings of the National Academy of Sciences, 109, 17143–17148. Friedemann, M. L. & Tubergen, P. (1987) Multiple sclerosis and the family. Archives of Psychiatric Nursing, 1, 47–54. Hertzman, C. (2010) Bringing a population health perspective to early biodevelopment: an emerging approach. In: Nature and Nurture in Early Child Development (ed. D. P. Keating), pp. 217–245. Cambridge University Press, New York. Hertzman, C., Power, C., Matthews, S. & Manor, O. (2004) Child development as a determinant of health across the life course. Current Pediatrics, 14, 438–443. Olgas, M. (1974) The relationship between parents’ health status and body image of their children. Nursing Research, 23, 319–324. Sieh, D. S., Meijer, A. M., Oort, F. J., Visser-Meily, J. M. & Van der Leij, D. A. (2010) Problem behavior in children of chronically ill parents: a meta-analysis. Clinical Child and Family Psychology Review, 13, 384–397. Sieh, D. S., Visser-Meily, J. M., Oort, F. J. & Meijer, A. M. (2012) Risk factors for problem behavior in adolescents of parents with a chronic medical condition. European Child & Adolescent Psychiatry, 21, 459–471.
