Psychosocial Factors in Children and Youth With Special Health Care Needs and Their Families

Abstract

Children and youth with special health care needs (CYSHCN) and their families may experience a variety of internal (ie, emotional and behavioral) and external (ie, interpersonal, financial, housing, and educational) psychosocial factors that can influence their health and wellness. Many CYSHCN and their families are resilient and thrive. Medical home teams can partner with CYSHCN and their families to screen for, evaluate, and promote psychosocial health to increase protective factors and ameliorate risk factors. Medical home teams can promote protective psychosocial factors as part of coordinated, comprehensive chronic care for CYSHCN and their families. A team-based care approach may entail collaboration across the care spectrum, including youth, families, behavioral health providers, specialists, child care providers, schools, social services, and other community agencies. The purpose of this clinical report is to raise awareness of the impact of psychosocial factors on the health and wellness of CYSHCN and their families. This clinical report provides guidance for pediatric providers to facilitate and coordinate care that can have a positive influence on the overall health, wellness, and quality of life of CYSHCN and their families.

Parenting When Children Have Lyme Disease: Fear, Frustration, Advocacy

“…Although children are often affected by Lyme disease [8,10], the experience of families in which children suffer from the disease has received very little research attention. However, some related work has addressed the impact of other chronic diseases in childhood (for reviews see [22,23,24]). Caring for children with chronic pain, for example, has been found to be stressful for parents and often involved a change in how the parental role was defined [25].…”

Using Person-Reported Outcomes (PROs) to Motivate Young People with Diabetes

“…The brief behavioral strategies for screening and emotional support that go hand in hand with the use of PROs may further facilitate this process [21]. Guidelines and recommendations from both pediatric and adult diabetes professional associations support assessing PROs during routine clinical care [10,19,20]. In 2019, the American Academy of Pediatrics (AAP) issued guidance highlighting how psychosocial factors (e.g., depression, social determinants of health) influence young people with special health care needs, and the need to assess these factors within pediatric care to limit difficulties, reduce health disparities, and promote resilience [19].…”

“…Guidelines and recommendations from both pediatric and adult diabetes professional associations support assessing PROs during routine clinical care [10,19,20]. In 2019, the American Academy of Pediatrics (AAP) issued guidance highlighting how psychosocial factors (e.g., depression, social determinants of health) influence young people with special health care needs, and the need to assess these factors within pediatric care to limit difficulties, reduce health disparities, and promote resilience [19]. In addition, diabetesspecific guidelines from the American Diabetes Association (ADA) as well as the International Society for Pediatric and Adolescent Diabetes (ISPAD) recommend assessment of developmental progress in all domains of functioning (i.e., physical, intellectual, academic, emotional, and social development) on a routine basis [10,20].…”

“…Notably, PRO assessment with follow-up by the health care provider has been shown to positively influence well-being and satisfaction with care in young people with T1D [16][17][18]. Despite these recent developments in and recommendations of the use of PROs in clinical care [10,19,20], the literature on integration of PROs in diabetes clinical care is relatively new. Therefore, much remains to be learned about the most effective way for health care teams to utilize PROs to motivate young people with T1D and to improve selfmanagement and glycemic outcomes [9,21].…”

Nurturing care framework for inclusive early childhood development: opportunities and challenges

“…Several recent articulations by health sector actors strengthen the efforts to position neurodisability professionals as children's rights advocates . Although reflecting the unfortunate tradition of separating the general and disability health fields, the very insightful and compelling rights‐ and equity‐based platform and action cycle proffered by an illustrious international panel even quite recently relied solely on the UNCRC; it was silent on disability or the UNCRPD or specific ECD levers that bridge and strengthen the agenda.…”