Caring for the Caregiver (C4C): An Integrated Stepped Care Model for Caregivers of Children With Medical Complexity

Cardenas, Analyssa; Esser, Kayla; Wright, Elisabeth; Netten, Kathy; Edwards, Ashley; Rose, Julie; Vigod, Simone N.; Cohen, Eyal; Orkin, Julia

doi:10.1016/j.acap.2022.06.001

Cited by 9 publications

(4 citation statements)

References 44 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…Screening could involve questions about parental mental health during follow-up visits of CMC 36. Treatment strategies could include improving access to dedicated mental health clinicians within structured complex care teams 39…”

Section: Discussionmentioning

confidence: 99%

Mental health of caregivers of children with medical complexity: group-based trajectory modelling

Nathwani,

Fayed,

Grandi

et al. 2024

Arch Dis Child

Self Cite

View full text Add to dashboard Cite

ObjectiveTo describe the mental health trajectories of caregivers of children with medical complexity (CMC) and explore child characteristics associated with below-average caregiver mental health.DesignA secondary analysis of prospectively collected data from 123 caregivers of children aged <16 years with medical complexity from a multicentre randomised trial conducted from December 2016 to June 2021.Main outcome measureThe Patient-Reported Outcomes Measurement Information System Global Mental Health Scale was used to measure caregivers' self-reported mental health well-being. Group-based trajectory analysis was used to identify clusters of caregivers with similar changes in mental health across 24 months. Logistic regression was used to identify child-related predictors of mental health among caregivers.ResultsA final model with three distinct groups was selected, corresponding to caregivers with average (n=39), moderately below-average (n=65) and severely below-average (n=19) mental health scores, all with stable trajectories and high posterior probabilities (>90%). Moderately and severely below-average caregiver mental health groups, merged into one group, were associated with a greater number of child medical technology devices (adjusted OR (aOR) 1.44, 95% CI 1.01 to 2.04), gross motor difficulties (aOR 3.51, 95% CI 1.02 to 12.05) and worse child emotional (aOR 0.93, 95% CI 0.87 to 0.99) and psychological well-being (aOR 0.93, 95% CI 0.88 to 0.99).ConclusionMost caregivers of CMC reported persistently below-average mental health. The intensity of caregiving, as indicated by medical technology and child functional needs, is a potential risk factor for below-average caregiver mental health. Future design and evaluation of interventions focused on support for caregivers of CMC are warranted.

show abstract

Section: Discussionmentioning

confidence: 99%

Mental health of caregivers of children with medical complexity: group-based trajectory modelling

Nathwani,

Fayed,

Grandi

et al. 2024

Arch Dis Child

Self Cite

View full text Add to dashboard Cite

show abstract

“…Although this model of paid family caregiving is not without challenges, it can help eliminate the unpredictability of traditional homecare services and provide options and flexibility for family caregivers to care for Canadians with IDD successfully. An example of an innovative model of care in Canada is the newly developed integrated stepped-care model at the Hospital for Sick Kids in Toronto [22]. This model consists of a collaboration between a psychiatrist and a pediatric team managing children with medical complexity and embeds support for caregivers within a public-funded healthcare system.…”

Section: Discussionmentioning

confidence: 99%

“…Family caregivers are considered the backbone of social care provision [18], and their wellbeing is inter-dependent on the well-being of their care recipients, underscoring the need to advance knowledge about how best to optimize disability-related supports for families of people with IDD [19][20][21]. In Canada, support mechanisms, including formal support delivered through paid providers (psychiatrists, social workers, rehabilitation providers, etc., in integrated health teams) [22] or a combination of provincial, territorial, and federal public benefit schemes (Federal Child Disability Benefit, Canada Caregiver Credit, Ontario Assistance for Children with Severe Disabilities, etc. ), have been developed [23].…”

Section: Introductionmentioning

confidence: 99%

Identifying Research Priorities to Promote the Well-Being of Family Caregivers of Canadians with Intellectual and/or Developmental Disabilities: A Pilot Delphi Study

Fakolade,

Stone,

Bobbette

2023

IJERPH

View full text Add to dashboard Cite

Current programming and resources aimed at supporting the well-being of family caregivers often fail to address considerations unique to those caring for people with intellectual and/or developmental disabilities (IDDs). As a result, many caregivers of people with IDD feel isolated, stressed, and burnt out. A targeted research agenda informed by key stakeholders is needed and would allow research teams to coordinate resources, talents, and efforts to progress family caregiver well-being research in this area quickly and effectively. To address this aim, this pilot study used a Delphi design based on 2 rounds of questionnaires. In round 1, 19 stakeholders (18 females, 1 male), including 12 family caregivers, 3 rehabilitation providers, 2 researchers, and 2 organizational representatives, identified broad areas for caregiver well-being research. After collating the responses from round 1, stakeholders were asked to rank whether each area was considered a research priority in round 2. Data were analyzed using descriptive statistics and conventional content analysis. Eighteen stakeholders completed the round 2 survey (1 caregiver did not complete the round 2 survey), after which a consensus was reached. Stakeholders identified nine broad priorities, including system-level programs and services, models of care, health promotion, social inclusion, equity and diversity, capacity building, care planning along the lifespan, and balancing formal and natural community-based supports. Although preliminary in nature, the research priorities generated using an inclusive and systematic process may inform future efforts to promote the well-being of caregivers of Canadians with IDD.

show abstract

“…4,23 It has more recently been suggested that to optimize outcomes for CMC, one must support both the child and the family, as strengthening resilience in caregivers allows them to better meet their child's needs; to care for the caregiver is to care for the child. [24][25][26][27][28] This study explores factors influencing wellness of the caregiver and family of CMC, thereby highlighting opportunities for health care provider intervention.…”

Section: Discussionmentioning

confidence: 99%

The Experience of Parental Caregiving for Children With Medical Complexity

Teicher

Moore

Esser

et al. 2022

Clin Pediatr (Phila)

Self Cite

View full text Add to dashboard Cite

Children with medical complexity (CMC) have complex chronic conditions with significant functional impairment, contributing to high caregiving demand. This study seeks to explore impacts of parental caregiving for CMC. Fifteen caregivers of CMC followed at a tertiary care hospital participated in semi-structured interviews. Interviews were concurrently analyzed using a qualitative description framework until thematic saturation was reached. Codes were grouped by shared concepts to clarify emergent findings. Four affected domains of parental caregiver experience with associated subthemes (in parentheses) were identified: personal (identity, physical health, mental health), family (marriage, siblings, family quality of life), social (time limitations, isolating lived experience), and financial (employment, medical costs, accessibility costs). Despite substantial challenges, caregivers identified two core determinants of personal resilience: others’ support (hands-on, interpersonal, informational, material) and a positive outlook (self-efficacy, self-compassion, reframing expectations). Further research is needed to understand the unique needs and strengths of caregivers for this vulnerable population.

show abstract

Caring for the Caregiver (C4C): An Integrated Stepped Care Model for Caregivers of Children With Medical Complexity

Cited by 9 publications

References 44 publications

Mental health of caregivers of children with medical complexity: group-based trajectory modelling

Mental health of caregivers of children with medical complexity: group-based trajectory modelling

Identifying Research Priorities to Promote the Well-Being of Family Caregivers of Canadians with Intellectual and/or Developmental Disabilities: A Pilot Delphi Study

The Experience of Parental Caregiving for Children With Medical Complexity

Contact Info

Product

Resources

About