Caring for Caregivers of High-Needs Children

Peckham, Allie; Spalding, Karen; Watkins, Jillian; Bruce-Barrett, Cindy; Grasic, Marta; Williams, A. Paul

doi:10.12927/hcq.2014.24017

Cited by 20 publications

(21 citation statements)

References 0 publications

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“…Three studies described health and related supports as interventions addressing a range of stressors exacerbating caregiver burden and highlighted the importance of early intervention before a breaking point is reached (Axelsson ; Peckham et al . ; Shepherd et al . ).…”

Section: Resultsmentioning

confidence: 99%

“…; Peckham et al . ). While family caregivers are often defined as those with parental or legal responsibilities, all members may be called on to share in care responsibilities (Barlow et al .…”

Section: Introductionmentioning

confidence: 97%

“…Such circumstances foster extreme levels of stress and burden, putting caregivers at high risk of breakdown (Peckham et al . ).…”

Section: Introductionmentioning

confidence: 97%

See 2 more Smart Citations

Children with medical complexity: a scoping review of interventions to support caregiver stress

Edelstein

Schippke

Sheffe

et al. 2016

Child

130

111

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Positive findings of reductions in caregiver stress were noted within an emerging body of evidence on effective interventions for families of children with medical complexity. A commonality across domains was a significant focus on streamlining services and reducing the burden of care related to varied pressures experienced, including time, finances, care needs and service access, among others. There was non-conclusive evidence however around which of the six identified intervention domains or combination thereof are most effective for reducing stress. These promising findings demonstrate that stress reduction is possible with the right support and that multiple interventions may be effective in reducing burdens of care experienced by families of children with medical complexity.

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Section: Resultsmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 97%

See 1 more Smart Citation

Children with medical complexity: a scoping review of interventions to support caregiver stress

Edelstein

Schippke

Sheffe

et al. 2016

Child

130

111

View full text Add to dashboard Cite

show abstract

“…41-44 These resources, in conjunction with enhanced care coordination and home caregiver support may be particularly important for families of CMC affected by financial and social hardship. 45 Similarly, these families may benefit from referrals to private charities, non-profit agencies, or parent support groups that may exist outside the walls of the health system. 46 Should such referrals prove to be of value for families of CMC, there may be policy implications within evolving payment models.…”

Section: Discussionmentioning

confidence: 99%

Financial and Social Hardships in Families of Children with Medical Complexity

Thomson

Shah

Simmons

et al. 2016

The Journal of Pediatrics

120

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Objective To describe hardships experienced by families of children with medical complexity (CMC) and compare them with those experienced by families of children with asthma. Study design We assessed hardships in a cohort of 167 families of CMC. Surveys assessed socio-demographics and hardships (e.g., financial: inability to pay bills; social: limited help from family/friends). CMC cohort hardships were compared with those of an established cohort of children hospitalized with asthma using multivariable logistic regression. Results CMC had diagnoses in a median of 5 different complex chronic condition categories (most common neurologic/neuromuscular) and the majority (74%) were dependent on technology. Over 80% of families of CMC reported experiencing ≥1 hardship; 68% with financial and 46% with social hardship. Despite higher SES than asthma families, families of CMC often experienced more hardships. For example, families of CMC were significantly more likely to report failure to pay rent/mortgage (aOR 2.6, 95% CI: 1.6, 4.3) and the expectation of little to no help from family/friends (aOR 3.2, 95% CI: 2.1, 5.1). Conclusions Families of CMC frequently report financial and social hardships, often at rates higher than asthma families who were generally of lower SES. Identifying and acting upon hardships may be an important addition to the care of CMC.

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“…12 Children's hospitals in Canadian provinces and Australian states have developed rigorous educational curricula and telemedicine capabilities to optimize the caregiving skills of rural families and rural health care providers of children with medical complexity. [36][37][38] Further investigation is needed to determine how to best meet the health care needs of rural children and support rural pediatricians, family practice physicians, and other health care providers in delivering high-quality care to rural children in medically underserved areas after discharge from children's hospitals. As insurers, state Medicaid programs, and federal agencies consider enacting financial penalties on pediatric hospitals with excess readmissions, the association between patient rurality and the likelihood of readmission should be considered for risk adjustment.…”

Section: Discussionmentioning

confidence: 99%