Reaction4

Commentary: Reflecting on the History of

Family Systems Work Within the Field of

Pediatric Psychology

Kimberly S. Canter, PHD

Nemours Center for Healthcare Deliver Science, Nemours Children’s Health System

All correspondence concerning this article should be addressed to Kimberly Canter, PhD., Nemours Center for

Healthcare, Deliver Science, 1600 Rockland Road, Wilmington, DE 19081. Email: [email protected]

Received February 9, 2019; revisions received April 22, 2019; accepted April 24, 2019

As a junior investigator committed to advancing the science surrounding family focused psychosocial inter- ventions within pediatric psychology, it is both excit- ing and daunting to take a step back and reflect on the history of this important topic. The “take away” mes- sage of Friedrich’s (1977) paper rings loud and clear today, over four decades after its initial publication— chronic illness and disability do not exist in a bubble, but rather have wide-reaching implications for the whole family unit. The language we use today has changed and our explorations of family functioning have become both more explicit and more nuanced; however, it is not difficult to imagine an investigator today drawing similar conclusions to Freidrich about the important role of the entire family within pediatric psychology.

A recent historical analysis found that the content code “family system” was the most popular overall content in the history of The Journal of Pediatric Psychology, comprising 11% of articles published since the journal’s inception. The “family system” code was also the most popular content code in every decade since the 1970s, with the exception of the 1980s (Canter, Amaro, Noser, & Roberts, 2018). It is quite clear that our field agrees that the social and emotional ramifications of having a child with a chronic illness are just as important to consider for the whole family system as the illness itself, and this belief is deeply engrained in many of our research studies.

The widespread recognition of the importance of the family is also apparent in the hospitals where many of us work, from the design of patient rooms with parent sleeping areas, to family advisory coun- cils, to support programs for siblings. The historical context in which Freidrich’s review was written is

important to consider, as much that we may take for granted today (e.g., parents as medical decision mak- ers for their children) actually represents a seismic shift away from institutionalization and past schools of thought about approaches to childhood disease and disability (Wells, 2011). While Friedrich was making the case for considering the family and the impact of disease on the family in his article, today we inherently recognize the critical and universal importance of thinking of the child as part of a larger ecological sys- tem. The field has expanded to consider the various ways that the child, family, and broader social context impact and interact with one another in a multidirec- tional manner. Having “grown up” professionally in this environment, it was interesting to reflect on a time when pediatric psychologists were tasked with consid- ering the role of families.

In many ways, the field has evolved considerably since the publication of Friedrich’s article in 1977. While the Friedrich paper acknowledges that some families are resilient when faced with an illness or dis- ability, I found the overall tone of the commentary to be fairly pessimistic with regard to the impact of ill- ness. In part, this may relate to the unique historical context from which Freidrich was writing, where parents were expected to care for their medically com- plex children without the resources and supports that, while far from perfect, exist for many families today. Today, our field’s understanding of the impact of chronic illness is far more nuanced, with more explicit models and theories specific to the role of families in promoting adjustment and adaptation to chronic dis- eases over time. There is also a more widespread focus on the idea that many families are resilient (e.g., Hilliard, McQuaid, Nabors, & Hood, 2015). While

VC The Author(s) 2019. Published by Oxford University Press on behalf of the Society of Pediatric Psychology. All rights reserved. For permissions, please e-mail: [email protected] 774

Journal of Pediatric Psychology, 44(7), 2019, 774–776

doi: 10.1093/jpepsy/jsz038

Advance Access Publication Date: 17 May 2019

Commentary

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ber 2026

we recognize that subgroups of families will experi- ence significant hardship, we also know that many families will do well overall following the diagnosis of a pediatric chronic illness (Kazak, Schneider, Didonato, & Pai, 2015). Although our understanding of family trajectories and outcomes is in no way com- plete, we recognize the importance of adopting resil- ience and strength-based approaches when providing clinical care to families and developing research stud- ies. We also increasingly recognize the importance of delivering customized, tailored care to families, in- formed by their specific needs and strengths.

The importance of psychosocial screening has grown within our field as well, allowing us to identify the specific needs for a particular family (e.g., through use of an instrument like the Psychosocial Assessment Tool) and provide clinical care consistent with those needs (Kazak et al., 2015). Critically, psychosocial screening also allows us to recognize the shifting and evolving needs of families at various time points on an illness trajectory. When I think about the future of our field, ongoing work to “match” families to psychoso- cial interventions that meet their specific needs at a specific time is an exciting area for future growth.

The explicit focus on the marital relationship and sib- ling functioning also jumped out to me as I read Friedrich’s paper. Friedrich commented on the “neglect” of the healthy siblings in the literature, and identified the needs of siblings as an important area of focus for our field. Importantly, and perhaps a bit depressingly, sib- lings remain understudied and under-supported within our field. Important research has identified critical needs, and working to develop interventions for siblings remains an area for future growth (Long et al., 2018). The explicit needs of siblings (Gerhardt, Lehmann, Long, & Alderfer, 2015) and parents/caregivers (Kearney, Salley, & Muriel, 2015) are highlighted in the Standards of Psychosocial Care for Parents of Children with Cancer (Wiener, Kazak, Noll, Patenaude, & Kupst, 2015), and these standards may serve as models for “calls to action” in other populations as well.

The specific mention of financial strain associated with pediatric chronic illness was also striking to me, as this is an area where progress has been more stag- nant in the sense that financial toxicity remains a sa- lient and often debilitating concern for families managing a childhood chronic disease (e.g., Pelletier & Bona, 2015). Studies focused on cost reduction and cost savings for both families and the healthcare sys- tem will remain an important future direction for our field (e.g., McGrady, Echman, O’Brien, & Pai, 2018), and resources such as financial counseling and guid- ance are important to consider clinically. Challenges related to representation in family focused interven- tion research also remain true today. Although our attributions may be different than those described by

the author, we continue to struggle with overrepresen- tation of mothers in research compared to fathers and other caregivers. Working to expand our research to include the perspectives and experiences of more di- verse families—including diversity in terms of race, ethnicity, and family structure—will only strengthen the impact we have on the understanding and improv- ing the care of children with chronic illnesses and their families (Alderfer, 2017).

As I look to the future of our field after reflecting on the past, I am excited by all of the opportunities to build on the foundation introduced by Friedrich. Advanced statistical methods and new approaches to data analysis hold great promise for developing more sensitive and nuanced understandings of the experien- ces of families. Novel intervention delivery modalities (e.g., eHealth interventions) and multisite collabora- tive studies afford us the opportunity to expand the reach of evidence-based interventions. A movement toward patient-engaged research also provides the op- portunity to partner with families to set research agen- das that truly meet their needs at different time points, and implementation science and other approaches to more rapidly disseminate quality care are particularly exciting to me as I think about the future. I recognize that, in many ways, these ideas are just the tip of the iceberg—and I look forward to seeing where the field moves in the years to come.

References

Alderfer, M. (2017). Commentary: Family processes and out- comes: research advances and future directions. Journal of Pediatric Psychology, 42, 125–129.

Canter, K., Amaro, C., Noser, A., & Roberts, M. (2018). Historical analysis: The Journal of Pediatric Psychology from 1976 to 2015. Journal of Pediatric Psychology, 43, 21–30.

Friedrich, W. (1977). Ameliorating the psychological impact of chronic physical disease on the child and family. Journal of Pediatric Psychology, 2, 26–31.

Gerhardt, C. A., Lehmann, V., Long, K. A., & Alderfer, M. A. (2015). Supporting siblings as a standard of care in pe- diatric oncology. Pediatric Blood & Cancer, 62, S750–S804.

Hilliard, M., McQuaid, E., Nabors, L., & Hood, K. (2015). Resilience in youth and families living with pediatric health and developmental conditions: introduction to the special issue on resilience. Journal of Pediatric Psychology, 40, 835–839.

Kazak, A., Schneider, S., Didonato, S., & Pai, A. (2015). Family psychosocial risk screening guided by the Pediatric Psychosocial Preventative Health Model (PPPHM) using the Psychosocial Assessment Tool (PAT). Acta Oncologica, 54, 574–580.

Kearney, J. A., Salley, C. G., & Muriel, A. C. (2015). Standards of psychosocial care for parents of children with cancer. Pediatric Blood & Cancer, 62, S632–S683.

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Long, K., Lehmann, V., Gerhardt, C., Carpenter, A., Marsland, A., & Alderfer, M. (2018). Psychosocial func- tioning and risk factors among siblings of children with cancer: an updated systematic review. Psychooncology, 27, 1467–1479.

McGrady, M. E., Eckman, M. H., O’Brien, M. M., & Pai, A. L. H. (2018). Cost-effectiveness analysis of an adherence- promotion intervention for children with leukemia: a Markov model-based simulation. Journal of Pediatric Psychology, 43, 758–768.

Pelletier, W., & Bona, K. (2015). Assessment of financial burden as a standard of care in pediatric oncology. Pediatric Blood & Cancer, 62, S619–S631.

Wiener, L., Kazak, A. E., Noll, R. B., Farkas Patenaude, A., & Kupst, M. J. (2015). Standards for the psychosocial care of children with cancer and their families: an introduction to the special issue. Pediatric Blood & Cancer, 62, S419–S424.

Wells, N. (2011). Historical perspective on family-centered care. Academic Pediatrics, 11, 100–102.

776 Canter

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a D epartm

ent of Public H ealth user on 16 Septem

ber 2026

Commentary: Reflecting on the History of

Family Systems Work Within the Field of

Pediatric Psychology

Kimberly S. Canter, PHD

Nemours Center for Healthcare Deliver Science, Nemours Children’s Health System

All correspondence concerning this article should be addressed to Kimberly Canter, PhD., Nemours Center for

Healthcare, Deliver Science, 1600 Rockland Road, Wilmington, DE 19081. Email: [email protected]

Received February 9, 2019; revisions received April 22, 2019; accepted April 24, 2019

As a junior investigator committed to advancing the science surrounding family focused psychosocial inter- ventions within pediatric psychology, it is both excit- ing and daunting to take a step back and reflect on the history of this important topic. The “take away” mes- sage of Friedrich’s (1977) paper rings loud and clear today, over four decades after its initial publication— chronic illness and disability do not exist in a bubble, but rather have wide-reaching implications for the whole family unit. The language we use today has changed and our explorations of family functioning have become both more explicit and more nuanced; however, it is not difficult to imagine an investigator today drawing similar conclusions to Freidrich about the important role of the entire family within pediatric psychology.

A recent historical analysis found that the content code “family system” was the most popular overall content in the history of The Journal of Pediatric Psychology, comprising 11% of articles published since the journal’s inception. The “family system” code was also the most popular content code in every decade since the 1970s, with the exception of the 1980s (Canter, Amaro, Noser, & Roberts, 2018). It is quite clear that our field agrees that the social and emotional ramifications of having a child with a chronic illness are just as important to consider for the whole family system as the illness itself, and this belief is deeply engrained in many of our research studies.

The widespread recognition of the importance of the family is also apparent in the hospitals where many of us work, from the design of patient rooms with parent sleeping areas, to family advisory coun- cils, to support programs for siblings. The historical context in which Freidrich’s review was written is

important to consider, as much that we may take for granted today (e.g., parents as medical decision mak- ers for their children) actually represents a seismic shift away from institutionalization and past schools of thought about approaches to childhood disease and disability (Wells, 2011). While Friedrich was making the case for considering the family and the impact of disease on the family in his article, today we inherently recognize the critical and universal importance of thinking of the child as part of a larger ecological sys- tem. The field has expanded to consider the various ways that the child, family, and broader social context impact and interact with one another in a multidirec- tional manner. Having “grown up” professionally in this environment, it was interesting to reflect on a time when pediatric psychologists were tasked with consid- ering the role of families.

In many ways, the field has evolved considerably since the publication of Friedrich’s article in 1977. While the Friedrich paper acknowledges that some families are resilient when faced with an illness or dis- ability, I found the overall tone of the commentary to be fairly pessimistic with regard to the impact of ill- ness. In part, this may relate to the unique historical context from which Freidrich was writing, where parents were expected to care for their medically com- plex children without the resources and supports that, while far from perfect, exist for many families today. Today, our field’s understanding of the impact of chronic illness is far more nuanced, with more explicit models and theories specific to the role of families in promoting adjustment and adaptation to chronic dis- eases over time. There is also a more widespread focus on the idea that many families are resilient (e.g., Hilliard, McQuaid, Nabors, & Hood, 2015). While

VC The Author(s) 2019. Published by Oxford University Press on behalf of the Society of Pediatric Psychology. All rights reserved. For permissions, please e-mail: [email protected] 774

Journal of Pediatric Psychology, 44(7), 2019, 774–776

doi: 10.1093/jpepsy/jsz038

Advance Access Publication Date: 17 May 2019

Commentary

D ow

nloaded from academ

ic.oup.com /jpepsy/article/44/7/774/5491108 by Alabam

a D epartm

ent of Public H ealth user on 16 Septem

ber 2026

we recognize that subgroups of families will experi- ence significant hardship, we also know that many families will do well overall following the diagnosis of a pediatric chronic illness (Kazak, Schneider, Didonato, & Pai, 2015). Although our understanding of family trajectories and outcomes is in no way com- plete, we recognize the importance of adopting resil- ience and strength-based approaches when providing clinical care to families and developing research stud- ies. We also increasingly recognize the importance of delivering customized, tailored care to families, in- formed by their specific needs and strengths.

The importance of psychosocial screening has grown within our field as well, allowing us to identify the specific needs for a particular family (e.g., through use of an instrument like the Psychosocial Assessment Tool) and provide clinical care consistent with those needs (Kazak et al., 2015). Critically, psychosocial screening also allows us to recognize the shifting and evolving needs of families at various time points on an illness trajectory. When I think about the future of our field, ongoing work to “match” families to psychoso- cial interventions that meet their specific needs at a specific time is an exciting area for future growth.

The explicit focus on the marital relationship and sib- ling functioning also jumped out to me as I read Friedrich’s paper. Friedrich commented on the “neglect” of the healthy siblings in the literature, and identified the needs of siblings as an important area of focus for our field. Importantly, and perhaps a bit depressingly, sib- lings remain understudied and under-supported within our field. Important research has identified critical needs, and working to develop interventions for siblings remains an area for future growth (Long et al., 2018). The explicit needs of siblings (Gerhardt, Lehmann, Long, & Alderfer, 2015) and parents/caregivers (Kearney, Salley, & Muriel, 2015) are highlighted in the Standards of Psychosocial Care for Parents of Children with Cancer (Wiener, Kazak, Noll, Patenaude, & Kupst, 2015), and these standards may serve as models for “calls to action” in other populations as well.

The specific mention of financial strain associated with pediatric chronic illness was also striking to me, as this is an area where progress has been more stag- nant in the sense that financial toxicity remains a sa- lient and often debilitating concern for families managing a childhood chronic disease (e.g., Pelletier & Bona, 2015). Studies focused on cost reduction and cost savings for both families and the healthcare sys- tem will remain an important future direction for our field (e.g., McGrady, Echman, O’Brien, & Pai, 2018), and resources such as financial counseling and guid- ance are important to consider clinically. Challenges related to representation in family focused interven- tion research also remain true today. Although our attributions may be different than those described by

the author, we continue to struggle with overrepresen- tation of mothers in research compared to fathers and other caregivers. Working to expand our research to include the perspectives and experiences of more di- verse families—including diversity in terms of race, ethnicity, and family structure—will only strengthen the impact we have on the understanding and improv- ing the care of children with chronic illnesses and their families (Alderfer, 2017).

As I look to the future of our field after reflecting on the past, I am excited by all of the opportunities to build on the foundation introduced by Friedrich. Advanced statistical methods and new approaches to data analysis hold great promise for developing more sensitive and nuanced understandings of the experien- ces of families. Novel intervention delivery modalities (e.g., eHealth interventions) and multisite collabora- tive studies afford us the opportunity to expand the reach of evidence-based interventions. A movement toward patient-engaged research also provides the op- portunity to partner with families to set research agen- das that truly meet their needs at different time points, and implementation science and other approaches to more rapidly disseminate quality care are particularly exciting to me as I think about the future. I recognize that, in many ways, these ideas are just the tip of the iceberg—and I look forward to seeing where the field moves in the years to come.

References

Alderfer, M. (2017). Commentary: Family processes and out- comes: research advances and future directions. Journal of Pediatric Psychology, 42, 125–129.

Canter, K., Amaro, C., Noser, A., & Roberts, M. (2018). Historical analysis: The Journal of Pediatric Psychology from 1976 to 2015. Journal of Pediatric Psychology, 43, 21–30.

Friedrich, W. (1977). Ameliorating the psychological impact of chronic physical disease on the child and family. Journal of Pediatric Psychology, 2, 26–31.

Gerhardt, C. A., Lehmann, V., Long, K. A., & Alderfer, M. A. (2015). Supporting siblings as a standard of care in pe- diatric oncology. Pediatric Blood & Cancer, 62, S750–S804.

Hilliard, M., McQuaid, E., Nabors, L., & Hood, K. (2015). Resilience in youth and families living with pediatric health and developmental conditions: introduction to the special issue on resilience. Journal of Pediatric Psychology, 40, 835–839.

Kazak, A., Schneider, S., Didonato, S., & Pai, A. (2015). Family psychosocial risk screening guided by the Pediatric Psychosocial Preventative Health Model (PPPHM) using the Psychosocial Assessment Tool (PAT). Acta Oncologica, 54, 574–580.

Kearney, J. A., Salley, C. G., & Muriel, A. C. (2015). Standards of psychosocial care for parents of children with cancer. Pediatric Blood & Cancer, 62, S632–S683.

Reflecting on the History of Family Systems 775

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Long, K., Lehmann, V., Gerhardt, C., Carpenter, A., Marsland, A., & Alderfer, M. (2018). Psychosocial func- tioning and risk factors among siblings of children with cancer: an updated systematic review. Psychooncology, 27, 1467–1479.

McGrady, M. E., Eckman, M. H., O’Brien, M. M., & Pai, A. L. H. (2018). Cost-effectiveness analysis of an adherence- promotion intervention for children with leukemia: a Markov model-based simulation. Journal of Pediatric Psychology, 43, 758–768.

Pelletier, W., & Bona, K. (2015). Assessment of financial burden as a standard of care in pediatric oncology. Pediatric Blood & Cancer, 62, S619–S631.

Wiener, L., Kazak, A. E., Noll, R. B., Farkas Patenaude, A., & Kupst, M. J. (2015). Standards for the psychosocial care of children with cancer and their families: an introduction to the special issue. Pediatric Blood & Cancer, 62, S419–S424.

Wells, N. (2011). Historical perspective on family-centered care. Academic Pediatrics, 11, 100–102.

776 Canter

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nloaded from academ

ic.oup.com /jpepsy/article/44/7/774/5491108 by Alabam

a D epartm

ent of Public H ealth user on 16 Septem

ber 2026