Psych Presentaion

How Does Having Physically Disabled Children Affect Parent-Child Relationships and Family Functioning?

By Kyle Jacques

Why this topic?

My fiance is an ambulatory wheelchair user. He has a genetic condition called Ehlers-Danlos Syndrome (EDS) which is a connective tissue disorder. Through our relationship together I've learned about his relationship with his parents as well as those experiences with other wheelchair users.

ambulatroy wheelchair user:individuals who still have mobility. They sometimes use a wheelchair because of age, energy level, and medical conditions which temporarily affect their ability to walk independently. (Gilani, 2024)

(He's pretty cool I guess.)

Definitions

Chronic Physical Illness / Disability

Congenital Anomoly

Attatchment Theory

Research Questions

Methods

Stats

- Data collected from pediatric physical medicine and rehabilitation clinics in China- Criteria: child less than 18 with a major diagnosis of physical disability; primary caregiver not having a severe or chronic medical condition - 91 Parents met the criteria and were recruited (N = 91)

Recruited parents filled out the Parenting Stress Index-Short Form and the 12-item version of the Chinese Health Questionnaire.

1) To assess the mental health of parents of children with physical disabilities2) To determine which factors, both child-related and parent-related, are associated with poor mental health in parents and may be used for prediction

Results

- 44% of parents of children with physical disabilities had poorer mental health - Parents whose children could not walk or be completely dependent in activities of daily living (ADL) were at a higher risk for poor mental health - Parents with mental health problems had statistically higher scores in PD, DC, as well as PCDI - Analysis indicates that the degree of parent-perceived stress, rather than the severity of the child's disability, was the only independent factor associated with overall parental mental health

Hypothesis

Methods

Stats

Having a chronic physical illness would be associated with more symptoms of anxiety and depression, increased levels of maternal depressive symptoms, more family dysfunction, and lower self-esteem; and that, maternal depressive symptoms, family dysfunction, and child self-esteem would mediate the influence of chronic physical illness on symptoms of anxiety and depression

- 7 items adapted from the Ontario Child Health Study Checklist - 4 items from the General Self-Image subscale of the Self-Description Questionnaire - a reduced version of the Center for Epidemiological Studies Depression Scale - 12-item General Functioning subscale of the McMaster Family Assessment Device - Asking mothers "Has a health professional diagnosed any of the following for this child...? (asthma; cerebral palsy; epilepsy; heart condition; kidney condition; any other long-term condition).

- Data from the Canadian National Longitudal Survey of Children and Youth- Criteria: Child 10-15; Primary caregiver was mother - Sample Size of N = 10,646

Results

- Children with chronic physical (CwCPI) illness had lower self-esteem and more symptoms of anxiety and depression compared to healthy controls - Mothers of CwCPI reported more symptoms of depression compared to mothers of healthy controls - Chronic physical illness in childhood increased symptoms of maternal depression, resulting in increases in family dysfunction, leading to increased symptoms of anxiety and depression

Stats

Methods

Research Question

- Criteria: Age between 12 and 36 months; mental development estimated to be at last 12 months; no significant sensory impairment; enough mobility to approach mother; some ability to signal across distance - 72 children with neurological and non-neurological birth defects and their mothers were recruited from medical specialty clinics in hospitals within Detroit- 39 had a neurologically based birth defect (cerebral palsy, epilepsy, etc.)- 33 had a non-neurological birth defect (cleft lip, cleft palate, etc.)

- Strange Situation Procedure- Attachment Q-sort - 15-minute Parent-Child Play Session - Bayley Scales of Infant Development - Appearance Impact Rating Scale

Whether certain aspects of children’s conditions were associated with parental behavior, and whether parenting accounted for differential rates of security found among children with various congenital anomalies

Results

- Strange Situation and Q-sort attachment were not significantly related even when the sample was divided based on diagnostic group- It is possible that among children with medical problems the two assess distict aspects of the attachment relationship- Parental quality was higher for children with more apparent physical anomalies- Possibly due to their ability to elicit a greater sensitivity and awareness on the part of the parent- Parenting quality significantly predicted attachment security - Indicated that parent variables are more important than child variables in predicting attachment

Discussion

All three studies found that, while childhood disability is a catalyst for family dysfunction with these families, it is how the child's primary caregiver deals with the stress that it causes. Each suggests different ways that parents may negate or alleviate that stress - including religion, family, therapy, or support groups.

Further Research

- Many studies on childhood disability deal with mental disability. While it is an important subject, I would like to see more research in physical disability and its effects on both parent and child.- As can be said for almost all parenting research, I would like to see more inclusion of fathers. The 2nd two studies even went far enough to exclude children whose primary caregiver wasn't the mother.

Questions?

Citations

Studies

Outside Sources

• Gilani, R. (2024, March 14). Ambulatory Wheelchair Users & Their Unique Experience. Gilani Mobility. https://www.gilanimobility.ae/ambulatory-wheelchair-user/#:~:text=The%20term%20ambulatory%20wheelchair%20user,injury%20or%20specific%20health%20conditions.
• Softa, B. (2022, March 30). The Effects and Solutions of Attachment Problems on Children’s Psychology- 1. Medium. https://byrslf.co/the-effects-and-solutions-of-attachment-problems-on-childrens-psychology-1-870b559cd12e

• Hung, J.-W., Wu, Y.-H., Chiang, Y.-C., Wu, W.-C., Yeh, C.-H., Chang Gung Memorial Hospital - Kaohsiung Medical Center, Chang Gung University College of Medicine, Department of Nursing, Chang Gung Institute of Technology, Taoyuan, Taiwan, & Graduate School of Nursing, College of Medicine, Chang Gung University, Taoyuan, Taiwan. (2010). Mental Health of Parents Having Children with Physical Disabilities. In Chang Gung Med J (Vols. 33–33, Issue 1, pp. 82–91).
• Ferro, M. A., & Boyle, M. H. (2014). The impact of chronic physical illness, maternal depressive symptoms, family functioning, and self-esteem on symptoms of anxiety and depression in children. Journal of Abnormal Child Psychology, 43(1), 177–187. https://doi.org/10.1007/s10802-014-9893-6
• Clements, M., & Barnett, D. (2002). Parenting and attachment among toddlers with congenital anomalies: Examining the Strange Situation and attachment Q‐sort. Infant Mental Health Journal, 23(6), 625–642. https://doi.org/10.1002/imhj.10040

Structural anomalies present at birth that can cause physical disability, intellectual and developmental disability, and other health problems

Having a biological basis, being present for at least one year, and resulting in one or more of the following: functional limitations, dependencies to compensate for limitations in function (e.g., medication, assistive devices), and the need for healthcare above the usual level of care for youth of that age

Attachment is where the child uses the primary caregiver as a secure base from which to explore and when necessary, as a haven of safety and a source of comfort.Attachment styles develop as a result of caregiver responses to the child when the attachment system is activated (Cao, 2024).