Mental health and parenting characteristics of caregivers of children with spina bifida

Malm‐Buatsi, Elizabeth; Aston, Christopher E.; Ryan, Jamie; Tao, Yeun; Palmer, Blake; Kropp, Bradley P.; Klein, Jake C.; Wisniewski, Amy B.; Frimberger, Dominic

doi:10.1016/j.jpurol.2014.09.009

Cited by 46 publications

(33 citation statements)

References 13 publications

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“…(Holmbeck & Devine, 2010). An American study, which included 84 caregivers of children and young people with spina bifida, showed higher scores of anxiety and depression among mothers with a partner (Malm-Buatsi et al, 2015). Another Brazilian study that assessed the burden of 43 caregivers of children and adolescents with myelomeningocele also showed higher burden scores in those who were living with a partner (Valença et al, 2012).…”

Section: Discussionmentioning

confidence: 99%

“…Different areas of the caregivers' lives are affected by their caregiver role: social, psychological, and economic domains are radically changed (Rofail, Maguire, Kissner, Colligs, & Abetz-Webb, 2013). Consequently, symptoms of anxiety and depression are very common among caregivers of children with myelomeningocele and their quality of life may be severely impaired (Malm-Buatsi et al, 2015;Valença, Menezes, Calado, & Cavalcanti, 2012).…”

Section: Introductionmentioning

confidence: 99%

See 1 more Smart Citation

Functional Independence of Children With Myelomeningocele: Is It Associated With the Informal Caregivers' Burden?

Cavalari

Filho

Caldeira

et al. 2017

Journal of Pediatric Nursing

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Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Functional Independence of Children With Myelomeningocele: Is It Associated With the Informal Caregivers' Burden?

Cavalari

Filho

Caldeira

et al. 2017

Journal of Pediatric Nursing

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“…Malm-Buatsi et al . (2015) found that involvement in recreational activities with other families affected by spina bifida was associated with more positive parenting characteristics. Our study did not consider parenting styles, but did receive positive feedback from parents about improved interaction with their child after having participated in parent support groups.…”

Section: Discussionmentioning

confidence: 99%

“…For children with both spina bifida and hydrocephalus, such shunt dependency has been associated with higher levels of parental anxiety and depression (Malm-Buatsi et al . 2015). …”

Section: Introductionmentioning

confidence: 99%

Parental stress and support of parents of children with spina bifida in Uganda

Bannink

Idro

Hove

2016

AJOD

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BackgroundChildren with disabilities in Sub-Saharan Africa depend for a large part of their functioning on their parent or caregiver. This study explores parental stress and support of parents of children with spina bifida in Uganda.ObjectivesThe study aimed to explore perceived stress and support of parents of children with spina bifida living in Uganda and the factors that influence them.MethodsA total of 134 parents were interviewed. Focus group discussions were held with four parent support groups in four different regions within the country. The Vineland Adaptive Behaviour Scales, Daily Functioning Subscales and Parental Stress Index Short Form (PSI/SF) were administered to measure the child’s daily functioning level and parental stress levels.ResultsParental stress was high in our study population with over half of the parents having a > 90% percentile score on the PSI/SF. Stress outcomes were related to the ability to walk (Spearman’s correlation coefficient [ρ] = −0.245), continence (ρ = −0.182), use of clean intermittent catheterisation (ρ = −0.181) and bowel management (ρ = −0.213), receiving rehabilitative care (ρ = −0.211), household income (ρ = −0.178), geographical region (ρ = −0.203) and having support from another parent in taking care of the child (ρ = −0.234). Linear regression showed parental stress was mostly explained by the child’s inability to walk (β = −0.248), practicing bowel management (β = −0.468) and having another adult to provide support in caring for the child (β = −0.228). Parents in northern Uganda had significantly higher scores compared to parents in other regions (Parental Distress, F = 5.467*; Parent–Child Dysfunctional Interaction, F = 8.815**; Difficult Child score, F = 10.489**).ConclusionParents of children with spina bifida experience high levels of stress. To reduce this stress, rehabilitation services should focus on improving mobility. Advocacy to reduce stigmatisation and peer support networks also need to be strengthened and developed.

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“…Early in life, children rely on caregivers for support and management of these tasks [4]. Caregivers of children with a chronic illness may experience poor sleep quality [5], family conflict [6], anxiety, depression [7], financial stress [8], and lower quality of life [9]. The 2011–2012 National Survey of Children’s Health found that only 56.7% of mothers and 62% of fathers reported excellent or very good physical and emotional health.…”

Section: Introductionmentioning

confidence: 99%

Predictors of Caregiver Burden among Mothers of Children with Chronic Conditions

et al. 2017

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Objective: The complex medical regimens of children and adolescents with chronic conditions can have a significant impact on families and households. Caregivers may experience burden, which can lead to negative health consequences and poor quality of life. The objective of this study was to determine child-related predictors and risk factors for caregiver burden among parents of children with chronic conditions. Methods: We distributed an institutional review board (IRB)-approved, online cross-sectional survey to parents of children who attended the Victory Junction therapeutic camp. Parents provided information on child demographics, disease characteristics, and healthcare utilization. Parents also answered the adapted Zarit Burden Interview, which measured caregiver burden. Children completed scales about self-management and self-efficacy. Linear regression analyses determined how children’s disease characteristics, health utilization, and self-management skills were associated with caregiver burden. Results: We enrolled 150 mother-child dyads. The mean age of child participants was 12.23 years (±2.5), with an age range of 6 to 16 years. It was determined that children’s number of medicines and injections (β = 0.161, p = 0.047), a diagnosis of attention-deficit/hyperactivity disorder (ADHD) in addition to the primary medical condition (β = 0.216, p = 0.008), frequent visits with a primary care provider (PCP) (β = 0.209, p = 0.026) and emergency room (ER) visits (β = 0.197, p = 0.038), and lower child self-efficacy (β = −0.241, p = 0.041) were predictors of increased caregiver burden. Conclusions: We identified risk factors for caregiver burden among mothers. Future studies should explore additional child-related characteristics as they relate to caregiver burden, and should determine if interventions for mothers of children with chronic conditions can lead to positive outcomes.

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Mental health and parenting characteristics of caregivers of children with spina bifida

Cited by 46 publications

References 13 publications

Functional Independence of Children With Myelomeningocele: Is It Associated With the Informal Caregivers' Burden?

Functional Independence of Children With Myelomeningocele: Is It Associated With the Informal Caregivers' Burden?

Parental stress and support of parents of children with spina bifida in Uganda

Predictors of Caregiver Burden among Mothers of Children with Chronic Conditions

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