Effects of Caregiving on the Families of Children and Adults with Disabilities

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Key points

  • There are a host of physical and mental stressors in caring for a child with a chronic disability.

  • The child and the family progress through different medical aspects of their disorder, but also through different aspects of life.

  • There are different models of care provision that can impact the family’s overall well-being.

  • There are simple methods to interact with families that will increase their satisfaction and happiness.

  • There are multiple challenges in transition and care of adults with

Giving and getting the diagnosis

Getting the diagnosis of a chronic disability is obviously a life-changing event. Parents assume that their children will always be “normal” or developing typically. Many parents, of course, have already observed that their child is different from other children their age. They have sought medical care to help make the diagnosis. Diagnoses such as cerebral palsy, muscular dystrophy, and autism, for example, are not usually diagnosed at birth. Patients with obvious birth defects and congenital

Factors of parenting a child with a disability

Peshawaria in an unpublished presentation in 2000 suggests that there are several domains of parenting a child with a disability. These include physical care, health, employment or career, support in the community, financial considerations, social embarrassment, relationships of the child and the family, and the effects of the disability on siblings. Each individual child within each individual disability presents unique physical care challenges. Certainly a child who has a diagnosis of gross

Raising a child with a disability

Raising a typically developing child is difficult enough for most families. However, the parents of a child with a disability, in addition to being faced with the shock of the diagnosis of the disability itself, encounter a host of new challenges. The families are learning new medical terms, such as cerebral palsy, muscular dystrophy, necrotizing enterocolitis, and a myriad of concepts that are probably foreign to them. Agencies such as United Cerebral Palsy, the Muscular Dystrophy Association,

Models of medical care for children with disabilities

The health care provider can have a great impact on the situation depending on their approach to the family. Parents want their health care providers to provide them with information, or at least point them in the right direction to obtain the information. They want the provider’s expertise, empathy and respect, and, above all, they want to form a partnership with the provider to make decisions together to improve the life of their child and, therefore, their family. This does put some pressure

Team structures for caring for a child with a disability

One of the largest stressors for a parent is the number of appointments that they and their child has to attend. One could list almost all of the specialties in a pediatric hospital and the family may need to see 3 or 4 of them throughout the year. This is hard enough if the family is of more than moderate means and lives near the medical center or hospital, but can be a huge problem if the patient has problems with transportation and lives further away. The parent, and often the entire family,

Basic structure for dialogue with the patient and their family

  • Greeting: Do not ignore the child. Establish a connection by touching; attempt to make eye contact. Notice details about what the child is wearing or what is on their wheelchair. Acknowledge the parents and the extended family—often there are grandparents, other children, and other health care providers such as nurses or therapists.

  • Prepare for Listening: Sit down. Look relaxed. Do not stand throughout the examination; use a chair to get to the eye level of the patient. Many children will have a

Feeding and Nutrition

Physical growth is one of the primary measures of health and well-being in children. Abnormal growth may be a sign of disruption in a child’s nutrition, environment, or health15 Decreased body fat and growth have been associated with increased health care utilization and decreased participation in society.16, 17

It seems intuitive to mention how important proper nutrition is to all aspects of a healthy life: Growth, muscle strength, respiratory function, cardiac function, neurologic function in

Caregiver quality of life

Caring for a child with a disability can have both positive and negative effects on parents. The goal of all caring parents is to provide the best quality of life for their child as well as to maximize their potential. Each family’s situation and coping ability is different based on the type and severity of disability of their child as well as a host of other factors including their socioeconomic status, education, culture, support network, and individual personality and parenting style.

Summary and personal experiences

Reid and colleagues50 interviewed parents whose disabled children had grown up, and asked them to share lessons learned and tips for new parents of children with disabilities. The title of their article was “If I knew then what I know now.” Although it is not common to have the author of an article cite personal references, I am a pediatric orthopedic surgeon who is the father of a 32-year-old young man who has total body cerebral palsy GMFCS IV, as well as dystonia and bipolar disorder. As a

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  • Cited by (30)

    • Maternal and child factors associated with the health-promoting behaviours of mothers of children with a developmental disability

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      The last decade has seen a plethora of studies about the experiences and self-reported mental health, stress and coping of mothers of children with disabilities with recent estimates of the incidence of depression and anxiety conservatively reported to be between 50 and 80 percent, (Collins et al., 2017; Fairthorne, de Klerk, & Leonard, 2016; Marquis, McGrail, & Hayes, 2020). Research links higher stress to accelerated aging, chronic medical conditions (Epel et al., 2004; Foody, James, & Leader, 2015) and physical health issues such as back injury (Brehaut et al., 2009; Chambers & Chambers, 2015; Miodrag, Burke, Tanner-Smith, & Hodapp, 2015). Given evidence that a health disparity is experienced by mothers, research that identifies the risk and protective factors is important and urgently needed.

    • Further psychometric evaluation of the My Family's Accessibility and Community Engagement (My FACE) tool: Mothers’ ratings of perceptions of community accessibility and engagement for their child with disabilities

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      Mothers have a multifaceted role that includes therapist, teacher, service navigator, direct care provider and advocate for their child (Bourke-Taylor, Howie, & Law, 2010). The complexity of the mothering role is known to result in higher stress for many mothers over time (Da Paz & Wallander, 2017), higher rates of some mental health conditions (Marquis, McGrail, & Hayes, 2020), chronic medical conditions (Chambers & Chambers, 2015), sleep disruption (Bourke-Taylor, Pallant, Law, & Howie, 2013) and exhaustion (Green, 2007). Mother’s perspectives are important to the service provision for children with disabilities, within a family-focused paradigm (King, Williams, & Hahn Goldberg, 2017).

    • Burden of caregiving after a child's in-hospital cardiac arrest

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      Caregiver burden is a multidimensional concept that reflects the stress and time demands of providing care for another person [1–3].

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    The authors have nothing to disclose.

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