Family unit-Centered Intendance

Motor Damage

Alicia J. Spittle , Stacey Dusing , in Encyclopedia of Infant and Early Babyhood Evolution (2nd Edition), 2020

Family unit-Centred Intendance

Family unit-centred care, where the child and family collaborate with wellness professionals to ready goals and make decisions nigh the management of the child's motor impairment, is considered a best practice in paediatric health care (Imms and Gibson, 2018). It is a philosophy of patient intendance delivery based on respect, collaboration and support between wellness professionals and the babe/young child's family. Family-centred care involves the therapists learning nigh the family'due south supports and routines, assisting them in accessing appropriate resources to provide services and providing care in a way that considers the family'due south well-beingness and priorities. In this model the family's values and priorities, along with the child's preferences and choices, are the center of assessment, handling and overall direction of the motor impairment. It'south important to exist mindful of parental well-beingness when working with infants and young children with motor impairments, every bit higher rates of anxiety, low, stress and grief accept been reported in these populations compared with children without motor impairment (Spittle and Treyvaud, 2016).

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Identifying, assessing, and supporting family unit caregivers in health and long-term care: Current progress and future opportunities

Catherine A. Riffin , Jennifer L. Wolff , in Bridging the Family Care Gap, 2021

Person- and family-centered care

Person- and family-centered care describes a partnership approach that respects and meaningfully involves individuals and their families in care planning and commitment. In contrast with conventional medical models where health intendance is organized effectually specific diseases and episodes of care, person- and family-centered care takes a more holistic arroyo past considering the goals, preferences, and values of individuals and their families. Consequent with models of supported decision making ( Glen, 2017; WHO, 2017), person- and family unit-centered care is predicated on the philosophy that individuals and the family besides every bit others who they elect to involve in their health constitute a "unit of care." This orientation is aligned with family caregivers existence integral members of the care team. Moreover, there is a growing motion to recognize that in this capacity family caregivers merit recognition and support rather than simply serving as a resources for the patient (Plant for Patient- and Family unit-Centered Intendance, 2010).

Person- and family-centered care has been recognized by the US Department of Health and Human Services (HSS) National Quality Strategy equally one of its 6 priorities. The Strategy advocates for more transparent, affordable, and higher quality care through the active appointment of individuals and their families (HSS, 2013) and for quality measures to monitor progress toward achieving delivery of person- and family-centered care. In keeping with the person- and family-centered intendance perspective, new models that encourage family unit involvement are slowly emerging throughout the intendance delivery system with the back up of the Centers for Medicare and Medicaid Services (CMS) Centre for Medicare and Medicaid Innovation. Answerable Care Organizations (ACOs), for example, are intended to reward quality of care outcomes over fee-for-service volume, emphasizing outcomes related to patient and caregiver experiences regarding provider advice, timeliness, and shared decision making (Fisher & Shortell, 2010; Rittenhouse, Shortell, & Fisher, 2009). Patient-Centered Medical Homes, a model for avant-garde primary care delivery, besides admit the broader social context in which individuals manage their health, focusing on the patient and family's unique needs, culture, values, and intendance preferences (Scholl, Torda, Peikes, Han, & Genevro, 2010; Stange et al., 2010).

Although person- and family-centered intendance has been conceptually embraced within these commitment models, it is not e'er accomplished in everyday exercise. Families ofttimes experience marginalized or ignored in wellness intendance encounters; they are simultaneously excluded from treatment decisions and care planning while assumed to be available to perform the tasks necessary to carry out the patient's treatment regimen (Family Caregiver Alliance, 2006a, 2006b; Schulz & Eden, 2016). The prevailing accent on individual privacy and autonomy has resulted in policies and practices that exclude families from treatment decision and planning. Reimbursement structures are designed to focus on the individual beneficiary rather than the family unit; information about patients' health and treatment plans are frequently inaccessible to the family unit due to misinterpretation of the Health Insurance Portability and Accountability (HIPAA) privacy rule; and clinical evaluations neglect to query about the family caregiver's willingness to provide assist or health and well-being. In full general, the overwhelming absenteeism of formal structures and standardized procedures that recognize and support families remains a missed opportunity for the United states health and long-term intendance systems.

A new vision for wellness and long-term care that elevates family-centered intendance alongside person-centered care volition require primal changes to existing practices and delivery processes. As no single arroyo volition likely exist advisable for all circumstances, achieving this goal should attend to several strategies, including: (ane) identification and assessment of family caregivers through their own interactions with the health care system (due east.g., annual wellness exams), (2) identification, assessment, and back up of family caregivers who accompany intendance recipients to medical visits (e.g., hospital access/belch), and (3) systematic attention to patient preferences for date of families. Enacting this strategy will crave commitment from providers supported past cess instruments, financial incentives, and care paths. Issues that will crave attention include development of clinically advisable caregiver cess tools, systematic attending to patient preferences, technical capabilities that enable transfer of data well-nigh both patients and their caregivers between medical and community-based services, funding to facilitate the integration of caregiver assessment and back up in intendance settings, reimbursement structures that encompass the family unit of measurement, educational activity and training for wellness care providers in how to administrate assessments and appoint with caregivers, and implementation science frameworks to guide the procedure of designing and embedding cess protocols in care commitment.

Guided in part by recommendations prepare forth past the National Academies' study on Families Caring for an Aging America (Schulz & Eden, 2016), we clear a roadmap for approaches to extend current progress and reorient intendance delivery toward person- and family unit-centered strategies. We hash out the relevance and importance of caregiver assessment in health and long-term intendance delivery, briefly reviewing current efforts that back up its integration into clinical practice. Throughout the chapter, we outline the challenges and opportunities for robust, scalable approaches to caregiver assessment in health and long-term care. Our goal is to stimulate sensation and dialog about approaches that researchers, practitioners, and policy makers may take to advance person- and family-centered care delivery through integrating caregiver assessment and support into practice.

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Services and Settings of Intendance

Laura N. Gitlin Ph.D. FAAN , Nancy A. Hodgson Ph.D., RN, FAAN , in Better Living with Dementia, 2018

What Is Person- and Family-Centered Care?

Person- and family-centered care is an essential element in dementia care, whether at home, at an developed twenty-four hour period service program, in the infirmary or living in a long-term intendance setting ( Brooker, 2004). Person-centered services refers to the bodily provision of intendance and support based on private preferences, values, lifestyle choices and needs, and the belief that at that place can exist a partnership between the provider of care and the recipient of care to ensure respect for the individual person's preferences and personal dignity (Koren, 2010). This arroyo must include the family member(s) when they are available and part of the network of care of individuals.

Since the person living with dementia is the common link betwixt services and settings, a person- and family-centered framework is the optimal model of intendance for guiding dementia intendance (Brooker, 2004). Given that nearly people prefer to alive in their own homes and communities, aging in place is a common, person- and family unit-centered goal for about individuals living with dementia. Nevertheless, as an individual's and family's needs change across the dementia trajectory so to their needs for services and supports (Fig. 10-1).

Figure x-1. Changing needs for dementia care services and settings across the disease trajectory.

In the earlier stages of disease, community-based services (including the home, outpatient care, back up services) are the most appropriate. Every bit the affliction transitions to more avant-garde stages, institutionally based settings (hospitals, nursing homes) may be required. Table 10-i summarizes the most common services and settings available for persons with dementia.

Tabular array 10-ane. Common Settings of Care

Service Setting Description of services provided
Location
Home assistance/personal care Community Companionship and bones domestic or household tasks such as house cleaning, meal preparation and shopping, washing, and ironing.
Memory clinic Community Identifies, investigates, diagnoses, and treats individuals with retentiveness problems including dementia.
Caregiver support Customs Includes in-person back up groups and online resources for family unit caregivers. Often serves as the starting point for caregiver education and support.
Abode healthcare Community Medically prescribed, skilled care provided by a licensed health professional person (east.g., nurse, occupational therapist, or concrete therapist).
Day intendance Community Socialization and planned activities provided in a safe environment. Transportation and meals are ofttimes provided.
Medical/primary care Community Refers to the first point of contact and principle betoken of contact with a healthcare practitioner (eastward.g., dr. or nurse practitioner) for basic rather than specialized intendance.
Transportation support Community Enables individuals who are no longer able to drive safely the ability to gain access to other community services, activities, and resource. Examples include public transit, taxi or car share service, special transportation services, or medication, grocery or meal delivery.
Respite Community or institution Short-term relief program provided by skilled care professional to assume caregiver responsibilities for a predetermined amount of fourth dimension.
Hospice Customs or institution End-of-life care provided by a team of specially trained providers, including doctors, nurses, home health aides, social workers, counselors, clergy, and volunteers. Includes medical care to convalesce symptoms and hurting (including medications and medical equipment), counseling about the emotional and spiritual impact of the end-of-life, respite care to allow caregivers relief, and grief support for the family.
Specialist services Community or establishment Secondary intendance services used to accost complex health care needs, such as comorbid illnesses that cannot solely be met through primary care services.
Residential care/nursing homes/skilled nursing Institution Provides skilled or unskilled nursing care for individuals with disabilities including dementia. Provides continuous, 24-hour/day care and long-term medical treatment. Services address issues such every bit nutrition, care planning, recreation, spirituality, nursing, and medical care.
Assisted living Institution Congregated residential settings that coordinate personal services, 24-hour/mean solar day supervision, and health-related services.
Retentiveness intendance Institution Provides intensive, long-term medical care for individuals with moderate to advanced stage dementia conditions in a fully staffed and monitored facility. Supervised care includes meals, activities, personal assist, medication management, and health management for residents and is staffed 24   hours/solar day
Acute intendance Institution Level of care and services where a person with dementia receives brief and active treatment for a severe injury or episode of disease, an urgent medical condition, or during recovery from surgery.

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Handling and Direction

ROSE ANN (ROZ) PARRISH , ... EUGENIA CHAN , in Developmental-Behavioral Pediatrics, 2008

Selected Class I Bear witness Regarding Family-Centered Care and Outcomes

Randomized controlled trials of components of family-centered intendance summarized in the 2 left columns of Table 8B-3 are described in further detail. Ireys and colleagues evaluated the event of referral to parent-to-parent support for mothers caring for children with chronic illness and plant that mothers in the intervention group had lower feet levels, as measured by the Beck Low Inventory and the Psychiatric Symptom Index. 38 Stein and Jessop showed that in a longitudinal family unit-centered back up program for families of CSHCN (the Pediatric Ambulatory Care Treatment Study), the group receiving intervention showed greater satisfaction with care, improvements in children's psychological aligning, and fewer psychiatric symptoms for mothers. 39 In Commonwealth of australia, Sanders demonstrated in multiple studies the effectiveness of a family-centered parenting intervention, the Positive Parenting Program (Triple-P) for problematic child behaviors. 39a Another study done in Sweden with children with newly diagnosed insulin-dependent diabetes mellitus showed associations betwixt outpatient family-centered intendance processes and parent-reported improvement in family unit climate only failed to testify a relationship to children's glycemic control or rate of readmission. 40 The last report mentioned in the randomized controlled trials in Table 8B-3 is a summary of class I studies that failed to show a simple link between care processes and child outcomes. 41 Instead, the authors argued that only if interventions addressed maternal responsiveness were they successful in improving children's developmental outcomes.

Using the three-level framework conceptualization of family-centered intendance noted in Tabular array 8B-2, researchers in the Ontario group documented an clan betwixt family-centered care for CSHCN and their families in Canadian children'south rehabilitation centers and outcomes such as parent satisfaction with services, 42, 43 too every bit improved parent and child psychosocial well-existence. 44 In these and other studies listed in Table 8B-iii in the two right columns, the investigators used methods that make information technology difficult to draw firm conclusions between family unit-centered care and outcomes. Furthermore, criticisms of using satisfaction and psychosocial well-existence as outcomes are derived from the bias presumed inherent in subjective information and the observation that the measurement of traits is more psychometrically reliable than the measurement of states (i.e., satisfaction). In a summary of selected prove, Rosenbaum found 5 randomized controlled trials evaluating family-centered intendance and provided a summary of other pertinent publications, about of who authors had used methods in the form 2 to class IV categories. 28 Shields and associates published a Cochrane Colloquium review protocol for meta-analysis of family-centered intendance for hospitalized children in 2003 (updated in 2004) only accept not begun collecting studies based on the protocol. 45 We were not able to discover any other publications of controlled trials or meta-analyses pertaining to family-centered care, despite an extensive search.

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Factors Affecting the Hereafter of Family Caregiving in the Usa

Robyn I. Rock , in Family Caregiving in the New Normal, 2015

Healthcare Reform

The Affordable Intendance Act and other federal and country-level healthcare reform efforts have focused increased attention on the commitment of more patient- and family unit-centered care that is designed to improve quality and efficiency. Payment and commitment arrangement initiatives are attempting to strengthen primary care and community-based services through better intendance coordination and integration. While families accept traditionally played a major role in helping their elderly relatives to navigate the healthcare system, they are increasingly being called upon to perform nursing and medical tasks of the kind and complexity once provided simply in hospitals and nursing homes and by home care professionals (Reinhard et al., 2012; see likewise Chapter 16). Medicare is attempting to reduce hospitalizations and readmissions, in part through more appropriate use of post–astute care, including short-term nursing home and habitation wellness intendance. These programs depend on family members or other close friends or neighbors to supplement these services and to be available for oversight, care coordination, and, increasingly, straight intendance delivery. Families, therefore, are increasingly faced with the responsibility of attending to the complex care needs of their relatives (including managing the transitions from one intendance setting to another or to habitation and providing complex medication management and wound intendance) as well equally difficult end-of-life decisions. These pressures are likely to abound over the coming decades as the healthcare organization strives for more efficiency, the population ages, and there are greater numbers of older adults with chronic illnesses and circuitous health weather condition.

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Immature Children With Neurodevelopmental Disorders: Intellectual Disabilities

Nancy Raitano Lee , ... Taralee Hamner , in Encyclopedia of Infant and Early Babyhood Development (Second Edition), 2020

Early Intervention

The Individuals with Disabilities Didactics Act (IDEA) supports states in the provision of early intervention and special instruction and related services for millions of children in the Us (McFarland et al., 2018 ). Office C is focused on children from nativity through historic period two years and emphasizes the development of an Individualized Family Service Plan (IFSP) to identify goals for intervention. The IFSP is a comprehensive program that includes developmental evaluations, goals, services, and family-centered care in order to promote the child's developmental gains ( Lipkin and Okamoto, 2015).

At this young age, interventions accost developmental delays across cognitive and physical development, vision and hearing, language/communication, social or emotional development, and adaptive functioning, while simultaneously managing any complex medical or behavioral challenges (Tomasello et al., 2010). Services targeting developmental delays frequently include speech and language therapy, occupational therapy, physical therapy, special instruction, nutritional services, and family coaching. Part C besides places importance on delivering interventions to infants and toddlers within naturalistic environments, ofttimes working within the dwelling house or a childcare center to provide children with opportunities to interact with peers without delays or disabilities (Lipkin and Okamoto, 2015). A transition plan is created for children who require continued intendance approaching their third birthday, as intendance shifts to a focus on their education through an Individualized Education Program (IEP).

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Using Secondary Datasets to Empathise Persons with Developmental Disabilities and their Families

Susan L. Parish , ... Esther Son , in International Review of Research in Developmental Disabilities, 2013

4 Results

Table 5.four reports the unadjusted comparing betwixt White, Black, and Latino children with intellectual and developmental disabilities on all medical dwelling house outcome indicators. There were statistically significant racial and ethnic disparities on several medical home subcomponents and the medical home composite. Specifically, Black children were less likely to have usual sources for sick and well care and family-centered care compared to White children. Latino parents were more than likely than White and Black parents to report that their children had big or small problems getting referrals, when needed. In terms of having indicators of a medical abode, Blackness children were less likely to accept 4 or more indicators of a medical dwelling compared to White children.

Tabular array 5.4. Bivariate Description of Medical Home Components for White, Blackness, and Latino Children with Intellectual and Developmental Disabilities

Subcomponents and Composite White (N  =   5424) Black (Due north  =   759) Latino (N  =   961) Test Statistic
northward % due north % due north % Wald F
Did not have personal MD or nurse 279 6 66 ix lxx eight 2.58
Lacked usual source of care 466 9 a 101 xv a 115 12 3.70*
Lacked family-centered intendance 2143 43 a 407 56 a 481 50 8.06**
Problems getting referral when needed 559 27 a 71 19 b 143 38 a,b 6.45**
Did not receive effective care coordination 2802 55 391 60 533 57 0.79
Care did not see medical home criteria 3556 69 a,b 545 77 a 699 78 b nine.19**
Number of medical habitation indicators
  Nil 29 ane 10 2 13 1 0.75
  ane or more 5213 99 718 98 898 99 0.75
  2 or more 5024 95 668 92 844 94 1.86
  3 or more 3824 71 486 64 603 68 i.98
  four or more than 2195 42 a 253 30 a 325 36 8.57**
  All 5 indicators 546 x 66 9 78 eight 0.56

Note: For analysis of a two-way table based on complex survey data, Wald statistic has been used considering a proper p value reflecting the complex design cannot be evaluated based on uncorrected Pearson chi-square statistic. A proper p value tin can exist evaluated from the pattern-based F statistic. The Wald statistic is normally converted to an F statistic to make up one's mind the p value (Lee & Forthofer, 2006). N, unweighted count, %, weighted percent, p  <   0.05. *p  <   0.05. **p  <   0.01. ***p  <   0.001. Alphabetic superscripts denote statistically meaning postal service hoc group differences.

Table 5.5 reports the unadjusted, bivariate comparison of all outcome variables betwixt Latino children whose parents spoke Spanish and Latino children whose parents spoke English language. There were statistically significant language-based disparities on two indicators of a medical domicile (i.e., have a personal dr. or nurse and no problems getting referrals when needed) and the medical home blended. Latino children of Castilian-speaking parents were more probable to have big or pocket-size trouble getting referrals when needed, but they were more likely to have a personal physician or nurse compared to Latino children of English language-speaking parents. A greater percentage of Latino children of Spanish-speaking parents (85%) received care that did non meet medical home criteria, compared to Latino children of English-speaking parents (75%). In terms of the numbers of indicators of a medical home, in that location were no statistically meaning language-based disparities.

Table five.5. Bivariate Comparing of Latino Children's Medical Dwelling house Indicators by Parental Language

Subcomponents and Composite Spanish (N  =   251) English (North  =   710) Test Statistic
n % n % Wald F
Did non have personal MD or nurse 11 2 59 11 10.21**
Lacked usual source of care 49 15 66 xi 0.85
Lacked family-centered care 137 55 344 47 1.67
Bug getting referral when needed 59 51 84 31 iv.00*
Did not receive constructive care coordination 136 53 397 58 0.56
Care did not run across medical home criteria 188 85 511 75 4.26*
Number of medical home indicators
  1 or more 227 99.7 671 99 2.68
  2 or more 209 94 635 93 0.12
  3 or more 133 63 470 71 1.65
  4 or more 75 37 250 36 0.03
  All 5 indicators 14 6 64 9 1.31

Note: For the analysis of a ii-fashion tabular array based on complex survey data, Wald statistic has been used considering a proper p value reflecting the complex design cannot be evaluated based on uncorrected Pearson chi-square statistic. A proper p value tin be evaluated from the design-based F statistic. The Wald statistic is usually converted to an F statistic to determine the p value (Lee & Forthofer, 2006). n, unweighted count; %, weighted percent; *p  <   0.05. **p  <   0.01. ***p  <   0.001.

Table v.6 presents the logistic regression results for components of the medical home and for the composite of whether care met the medical home criteria. After controlling for all model covariates, Black children were significantly less likely than White children to accept a usual source of care, to receive family-centered care, and to have care that met the medical home criteria. Latino children were significantly less probable than White children to have a personal md or nurse, and to have care that met the criteria for a medical home.

Table 5.6. Multivariate Logistic Regression Models Predicting Medical Abode Indicators Among Children with Intellectual and Developmental Disabilities

Characteristic Kid has Personal MD or Nurse (north  =   6985) Child has Usual Source for Care (north  =   6969) Child Receives Family unit-Centered Intendance (northward  =   6892) Child has No Problems Obtaining Referrals (n  =   2995) Child Receives Constructive Intendance Coordination (n  =   6490) Composite: Care Come across Medical Dwelling house Criteria (n  =   6751)
OR (95% CI) OR (95% CI) OR (95% CI) OR (95% CI) OR (95% CI) OR (95% CI)
Child'southward race is Blackness 0.76 (0.48, i.twenty) 0.73* (0.51, 1.04) 0.68*** (0.52, 0.89) 1.52 (0.96, 2.twoscore) 0.85 (0.64, 1.12) 0.74* (0.54, 1.00)
Child's ethnicity is Latino 0.57* (0.31, 1.07) 0.91 (0.57, 1.44) 0.88 (0.66, ane.18) 0.93 (0.lx, 1.45) 0.88 (0.65, 1.18) 0.73* (0.53, 1.01)
Child'southward gender is female person 1.47 (0.89, 2.xl) i.24 (0.92, 1.67) one.21** (1.00, 1.45) one.08 (0.79, ane.47) 1.22** (one.01, 1.48) 1.08 (0.90, i.31)
Parent is HS graduate 0.89 (0.53, i.47) 1.04 (0.74, 1.46) 0.82 (0.65, 1.04) 0.92 (0.64, ane.32) 0.99 (0.78, 1.28) 1.09 (0.85, 1.39)
Parent has less than HS 0.38*** (0.20, 0.70) 0.46*** (0.29, 0.74) 0.59*** (0.41, 0.85) 0.64* (0.37, 1.09) 1.xx (0.83, ane.74) 0.80 (0.55, 1.18)
Family unit income is 100–199% FPL one.34 (0.71, ii.53) 0.86 (0.59, 1.26) 0.88 (0.69, 1.11) 0.lxx* (0.47, one.05) 0.89 (0.70, 1.13) 0.94 (0.75, 1.20)
Family income is <   100% FPL one.26 (0.60, 2.61) 0.84 (0.55, one.29) one.10 (0.82, i.47) 0.76 (0.48, i.21) 1.03 (0.76, 1.40) one.thirteen (0.84, 1.53)
Single female parent family 0.68 (0.41, one.12) one.03 (0.74, ane.45) 0.73*** (0.58, 0.91) 1.20 (0.88, 1.76) 0.89 (0.71, one.12) 0.78** (0.61, 0.99)
Language other than English spoken at dwelling house ix.19**** (2.98, 28.31) 0.93 (0.47, ane.84) 0.73 (0.45, i.17) 0.42** (0.21, 0.82) 0.96 (0.59, 1.57) 0.55** (0.31, 0.99)
Child has public insurance 0.59 (0.30, 1.17) 0.94 (0.65, 1.38) 0.96 (0.76, ane.23) i.19 (0.78, 1.82) 1.13(0.88, 1.46) 0.92 (0.73, 1.17)
Child has individual and public insurance 0.85 (0.49, ane.50) 1.05 (0.67, 1.65) one.47*** (ane.12, i.92) 1.37 (0.82, 2.26) i.24 (0.93, ane.64) 1.xvi (0.86, 1.55)
Child is uninsured 0.19**** (0.08, 0.45) 0.34**** (0.19, 0.61) 0.90 (0.50, i.62) 1.84 (0.83, 4.07) 0.95 (0.48, i.86) 0.67 (0.32, 1.42)
Kid'southward condition usually/always affects activities 0.99 (0.69, 1.45) 0.79* (0.60, 1.03) 0.85* (0.72, one.01) 0.59**** (0.44, 0.79) 0.threescore**** (0.50, 0.72) 0.69**** (0.57, 0.83)
Child'due south age 0.97 (0.93, ane.02) 0.98 (0.95, 1.01) 0.99 (0.97, 1.01) 0.97 (0.95, 1.00) 0.98 (0.96, one.00) 0.99 (0.97, 1.02)
Number of visits of a hospital emergency room 1.10 (0.98, 1.23) 0.94* (0.89, 1.00) 0.97 (0.93, 1.01) 0.ninety**** (0.85, 0.95) 0.93*** (0.88, 0.97) 0.96* (0.92, 1.01)

Note: OR, odds ratio; CI, confidence interval; HS, high School; *p  <   0.x. **p  <   0.05. ***p  <   0.01. ****p  <   0.001.

Reference groups: white, male, parent has HS education or more, family income >   200% of the FPL, family structure is two parents, primary language is English language, child has private insurance, severity of condition never/sometimes affects child's activities.

The multivariate regression models of number of medical dwelling house indicators are presented in Table 5.7. Black and Latino children with intellectual and developmental disabilities were less likely than White children with intellectual and developmental disabilities to accept iv or more medical abode indicators.

Table 5.7. Multivariate Logistic Regression Model Predicting Number of Medical Home Indicators Among Children with Intellectual and Developmental Disabilities

Characteristics ≥   1 ≥   2 ≥   three ≥   4 All v
OR (95% CI) OR (95% CI) OR (95% CI) OR (95% CI) OR (95% CI)
Child'south race is Blackness 0.45 (0.thirteen, i.61) 0.77 (0.49, 1.24) 0.79 (0.58, ane.06) 0.61**** (0.47, 0.81) 0.78 (0.48, 1.25)
Child's ethnicity is Latino 0.63 (0.21, 1.85) 0.94 (0.56, i.59) 0.99 (0.72, i.37) 0.75* (0.56, i.01) 0.91 (0.58, 1.44)
Child's gender is female person one.56 (0.55, iv.41) i.56** (one.05, two.30) 1.25** (1.02, 1.53) i.32*** (i.10, 1.58) ane.14 (0.86, ane.51)
Parent is HS graduate 1.03 (0.29, 3.75) 0.70* (0.45, one.07) 0.66** (0.51, 0.86) 0.93 (0.73, i.18) 0.77 (0.54, 1.11)
Parent has less than HS 0.22** (0.06, 0.72) 0.39*** (0.22, 0.71) 0.51**** (0.35, 0.73) 0.63** (0.43, 0.91) 0.84 (0.49, 1.44)
Family income is 100–199% FPL 0.l (0.xiv, one.86) 0.90 (0.51, 1.58) 0.87 (0.67, ane.thirteen) 0.96 (0.79, 1.26) 1.05 (0.76, 1.46)
Family unit income is <   100% FPL 0.70 (0.13, 3.81) 0.78 (0.42, 1.45) 1.11 (0.79, 1.55) 1.01 (0.76, 1.36) one.xx (0.fourscore, 1.eighty)
Single mother family 0.89 (0.31, two.60) 0.93 (0.59, i.44) 0.89 (0.69, 1.13) 0.86 (0.69, 1.08) 1.03 (0.71, 1.fifty)
Language other than English spoken at home vi.59** (i.42, 30.62) 1.39 (0.59, 3.24) 0.74 (0.46, 1.21) 0.97 (0.58, 1.65) 0.52 (0.21, one.28)
Child has public insurance 1.50 (0.39, five.76) 1.01 (0.53, 1.94) 1.xv (0.87, 1.52) ane.17 (0.92, 1.48) i.33 (0.96, 1.83)
Child has individual & public insurance ii.17 (0.52, 9.08) 1.33 (0.68, 2.57) ane.fifty*** (1.10, 2.03) 1.43** (i.09, one.87) one.37 (0.93, ii.03)
Child is uninsured 0.25** (0.07, 0.92) 0.27**** (0.13, 0.54) 0.87 (0.51, 1.48) 1.06 (0.55, 2.06) 0.36* (0.12, i.07)
Child's status usually/always affects activities 0.56 (0.24, 1.33) 0.75 (0.52, 1.08) 0.80** (0.65, 0.97) 0.91 (0.76, 1.08) 0.98 (0.73, 1.thirty)
Child's age 0.92 (0.82, 1.04) 0.95** (0.92, 0.99) 0.96**** (0.94, 0.98) 0.95**** (0.93, 0.97) 0.93**** (0.90, 0.96)
Number of visits of a hospital emergency room 0.93 (0.77, 1.13) 0.98 (0.90, i.06) 0.95** (0.90, 0.99) 0.97 (0.93, ane.01) one.01 (0.96, one.07)

Annotation: OR, odds ratio; CI, confidence interval; HS, high School; *p  <   0.x. **p  <   0.05. ***p  <   0.01. ****p  <   0.001.

Reference groups: white, male, parent has HS educational activity or more, family income >   200% of the FPL, family structure is two parents, chief language is English, child has individual insurance, severity of status never/sometimes affects child'due south activities.

Table 5.eight reports the regression results comparison Latino children by parental language. After decision-making for all model covariates and in contrast with Latino children of English language-speaking parents, Latino children of Spanish-speaking parents were more likely to accept a personal doctor or nurse and were less likely to have no problems obtaining referrals when they were needed. The full models for ii of five medical abode subcomponents (i.e., kid receives family-centered intendance, child has no problems obtaining referrals, when needed) were not statistically significant. In addition, there was no statistically significant language-based disparity on a medical home blended for families having intellectual and developmental disabilities and the overall fit was not statistically significant. At that place was no statistically pregnant linguistic communication-based disparity on the number of indicators of a medical home (results not shown hither).

Table 5.8. Multivariate Logistic Regression Model Predicting Medical Home Indicators Among Latino Children

Iv and Covariates Child has Personal Doctor or Nurse (n  =   930) Child has Usual Sources for Sick and Well Care (due north  =   925) Child Receives Family unit-Centered Intendance (n  =   913) Child has No Bug Obtaining Referrals, when Needed (due north  =   433) Child Receives Effective Intendance Coordination (n  =   865) Blended: Care Meet Medical Dwelling Criteria (n  =   884)
OR (95% CI) OR (95% CI) OR (95% CI) OR (95% CI) OR (95% CI) OR (95% CI)
Latino children whose parent speak Spanish viii.67**** (ii.62, 28.74) ane.13 (0.48, two.66) 0.71 (0.42, 1.22) 0.45** (0.23, 0.91) 0.96 (0.55, 1.68) 0.60 (0.30, i.19)
Child'due south gender is female person 0.46 (0.17, i.23) i.26 (0.60, 2.61) 1.thirty (0.77, 2.20) 1.17 (0.55, 2.48) 1.39 (0.83, 2.32) 0.89 (0.fifty, 1.56)
Parent is HS graduate 0.79 (0.26, 2.45) 0.84 (0.39, 1.83) 0.95 (0.54, 1.67) 0.65 (0.30, 1.41) 0.84 (0.47, ane.50) 0.89 (0.45, ane.75)
Parent has less than HS 0.39* (0.13, 1.16) 0.22*** (0.09, 0.57) 0.87 (0.43, 1.75) 0.62 (0.23, i.65) 2.23** (1.07, 4.67) 1.11 (0.46, 2.69)
Family income is 100–199% FPL ii.27 (0.60, eight.59) 0.93 (0.36, two.39) 0.57* (0.30, ane.09) 0.44 (0.fifteen, 1.24) 1.08 (0.54, 2.15) 0.74 (0.36, i.52)
Family income is <   100% FPL 2.30 (0.66, 7.94) 0.97 (0.38, 2.46) 0.72 (0.37, i.40) 0.41 (0.14, 1.26) 1.07 (0.fifty, ii.26) 0.65 (0.29, 1.45)
Unmarried mother family 0.82 (0.24, two.79) 0.90 (0.41, 1.96) 0.53** (0.30, 0.92) i.24 (0.57, 2.70) i.28 (0.75, two.19) 0.92 (0.47, 1.eighty)
Kid has public insurance 0.19*** (0.05, 0.68) 0.65 (0.29, one.46) 1.46 (0.76, 2.81) ii.83** (one.07, vii.54) 0.79 (0.42, 1.47) 0.85 (0.45, ane.62)
Child has private and public insurance 0.38 (0.x, i.47) 0.82 (0.27, 2.53) ii.06* (0.96, iv.45) 2.42 (0.62, 9.51) 0.83 (0.37, ane.83) 1.01 (0.43, 2.35)
Child is uninsured 0.xv*** (0.03, 0.83) 0.15*** (0.05, 0.l) 1.79 (0.63, 5.08) ii.95 (0.79, xi.01) 0.39 (0.07, 2.10) 0.58 (0.09, three.72)
Child's status unremarkably/always affects activities ane.l (0.66, 3.42) 0.xc (0.47, 1.72) 0.83 (0.52, one.30) 0.45** (0.22, 0.91) 0.52*** (0.33, 0.83) 0.57** (0.33, 0.98)
Kid'southward age 0.96 (0.88, 1.05) 0.97 (0.90, ane.05) 1.01 (0.95, i.07) 0.96 (0.89, ane.03) 0.99 (0.94, 1.04) 1.00 (0.94, 1.07)
Number of visits of a hospital emergency room 1.06 (0.90, i.23) 0.89* (0.77, i.02) 0.99 (0.91, 1.10) 0.96 (0.81, 1.13) 0.89* (0.79, i.01) 0.99 (0.89, 1.12)

Note: OR, odds ratio; CI, confidence interval; HS, high School; *p  <   0.10. **p  <   0.05. ***p  <   0.01. ****p  <   0.001.

a2 strata omitted because they contain no subpopulation members. Reference groups: parental language is English, male person, parent has HS teaching or more than, family income >   200% of the FPL, family structure is ii parents, child has individual insurance, severity of condition never/sometimes affects child's activities.

Finally, models of interactions of race or ethnicity and income are presented in Table 5.9. We institute that racial and ethnic disparities in the odds of having a usual source of intendance were of greater magnitude for Blackness and Latino children living in families with income below the federal poverty level compared to White children whose family income was beneath the federal poverty level. Similarly, Black children with intellectual and developmental disabilities living in families with income 100–199% of the federal poverty level were less likely to accept a usual source of care compared to White children from similar income strata.

Table five.ix. Multivariate Logistic Regression Results with Interactions of Race, Ethnicity, and Income

4 and Covariates Child has Personal Doctor or Nurse (n  =   6985) Child has Usual Sources for Ill and Well Care (due north  =   6969) Child Receives Family-Centered Care (northward  =   6892) Child has No Problems Obtaining Referrals (n  =   2995) Kid Receives Constructive Care Coordination (n  =   6490) Composite: Care Meet Medical Home Criteria (n  =   6751)
OR (95% CI) OR (95% CI) OR (95% CI) OR (95% CI) OR (95% CI) OR (95% CI)
Child'south race is Blackness 0.91 (0.37, 2.23) one.97 (0.95, 4.17) 0.62** (0.41, 0.92) 1.05 (0.42, two.61) i.07 (0.71, 1.63) 0.86 (0.53, 1.forty)
Kid's ethnicity is Latino 0.51 (0.xx, 1.26) 1.30 (0.69, 2.45) 0.96 (0.65, one.44) ane.04 (0.53, 2.06) 0.81 (0.53, 1.22) 0.92 (0.61, 1.41)
Kid'southward gender is female 1.47 (0.91, 2.39) one.23 (0.92, i.66) 1.21* (1.02, 1.46) 1.07 (0.79, 1.46) 1.23** (1.02, 1.48) one.08 (0.ninety, 1.31)
Parent is HS graduate 0.xc (0.55, one.49) i.06 (0.75, i.50) 0.82* (0.64, 1.03) 0.92 (0.64, one.31) 1.01 (0.79, 1.thirty) i.08 (0.85, 1.38)
Parent has less than HS 0.38*** (0.20, 0.71) 0.48*** (0.30, 0.77) 0.59*** (0.42, 0.85) 0.64 (0.38, one.ten) 1.twenty (0.83, 1.74) 0.82 (0.55, 1.21)
Family unit income is 100%–199% FPL 1.15 (0.61, 2.fourteen) one.06 (0.69, i.63) 0.88 (0.68, 1.14) 0.67* (0.44, 1.04) 0.95 (0.73, 1.24) 1.03 (0.79, one.34)
Family income is <   100% FPL 1.47 (0.60, three.57) 1.31 (0.78, 2.23) 1.eleven (0.80, 1.56) 0.77 (0.47, one.25) 0.97 (0.69, 1.36) 1.32 (0.94, 1.84)
Unmarried mother family 0.67 (0.41, 1.11) 1.04 (0.74, 1.46) 0.73*** (0.58, 0.91) one.25 (0.88, 1.77) 0.89 (0.71, one.12) 0.78* (0.61, 1.00)
Linguistic communication other than English language spoken at home 8.61**** (2.66, 27.93) 0.99 (0.49, 2.01) 0.75 (0.46, 1.22) 0.43** (0.22, 0.71) 0.91 (0.55, 1.52) 0.63 (0.33, 1.19)
Kid has public insurance 0.58 (0.29, 1.fifteen) 0.91 (0.62, 1.32) 0.96 (0.75, one.22) 1.18 (0.78, 1.79) 1.xv (0.ninety, 1.47) 0.91 (0.72, ane.15)
Child has private and public insurance 0.86 (0.49, one.51) ane.04 (0.66, 1.64) 1.47*** (one.12, ane.92) 1.38 (0.83, ii.27) 1.24 (0.93, 1.64) 1.16 (0.86, 1.55)
Child is uninsured 0.xix**** (0.08, 0.44) 0.32**** (0.18, 0.56) 0.xc (0.51, one.59) i.83 (0.83, 4.02) 0.95 (0.49, 1.86) 0.66 (0.31, one.xl)
Child'due south condition usually/always affects activities 0.99 (0.69, one.42) 0.77* (0.58, 1.01) 0.85* (0.72, ane.01) 0.59*** (0.44, 0.80) 0.60**** (0.fifty, 0.72) 0.68**** (0.57, 0.82)
Child'due south age 0.97 (0.92, 1.01) 0.98 (0.95, one.01) 0.99 (0.97, 1.01) 0.97 (0.94, 1.00) 0.98 (0.97, 1.01) 0.99 (0.98, 1.02)
Number of visits of a infirmary emergency room 1.09 (0.98, 1.21) 0.94* (0.89, 0.99) 0.97 (0.92, ane.01) 0.xc**** (0.85, 0.95) 0.93*** (0.89, 0.97) 0.96* (0.92, 1.00)
100–199% FPL   ×   Black 1.53 (0.36, half dozen.43) 0.31** (0.11, 0.86) 1.23 (0.60, 2.55) ane.76 (0.fifty, 6.14) 0.56 (0.26, 1.18) 0.72 (0.32, 1.59)
100–199% FPL   ×   Latino ane.38 (0.27, 6.98) 0.64 (0.24, 1.71) 0.85 (0.44, i.63) 0.92 (0.35, ii.46) ane.04 (0.54, i.99) 0.71 (0.36, 1.43)
<   100% FPL   ×   Black 0.59 (0.nineteen, 1.86) 0.22*** (0.09, 0.57) 1.xiv (0.63, 2.06) 1.56 (0.52, 4.72) 0.83 (0.45, ane.53) 0.77 (0.39, ane.51)
<   100% FPL   ×   Latino 1.08 (0.32, 3.71) 0.45 due north (0.eighteen, 1.12) 0.87 (0.47, one.61) 0.fourscore (0.31, ii.03) ane.28 (0.68, two.41) 0.55 (0.26, 1.18)

Note: OR, odds ratio; CI, confidence interval; HS, high School; FPL, federal poverty level; *p  <   0.10. **p  <   0.05. ***p  <   0.01. ****p  <   0.001.

Reference groups: parental linguistic communication is English, male, parent has HS education or more, family unit income >   200% of the FPL, family unit structure is two parents, kid has private insurance, severity of status never/sometimes affects kid'southward activities.

To investigate the nature of interaction effect in depth, nosotros calculated predicted probabilities of having medical home subcomponents or composite across dissimilar levels of race/ethnicity and poverty level. These predicted probabilities were obtained by holding all other covariates at their sample ways. Figure 5.one depicts these predicted probabilities for the indicator having a usual source for sick and well care, which shows statistically meaning overall interaction effect, by race and beyond income categories. There was no significant disparity betwixt White and Blackness children who lived with families at income that was more than twice the federal poverty level, simply disparities widened for near-poor (i.e., 100–199% FPL) and poor (i.eastward., <   100% FPL) Black children. In addition, the graph shows a similar pattern of moderation for Latino children compared to White children with respect to having a usual source of care.

Figure v.1. Adjusted predicted probabilities with interactions of race, ethnicity, and poverty.

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Neonatal Neurology

Iona Novak , Catherine Morgan , in Handbook of Clinical Neurology, 2019

NICU-based parent–kid interaction interventions

Within the intensive intendance environment, it is especially important to actively foster positive parent–child interactions. Parents initially hand over control of care to the healthcare team to ensure their infant's survival, which can make parents feel helpless and underinvolved. It is of import that control is handed dorsum to parents using a family unit centered care approach. Otherwise parents tin can get passive observers of their babe's intendance, which can interfere with bonding and elevate parental stress. When parents are trained to provide most of the intendance to their infant in the NICU environment, using an approach known as family integrated care (FIC), infant's outcomes are improve (O'Brien et al., 2013).

FIC: The parent is provided with daily teaching, from a ready curriculum, most how to provide care for their baby in the NICU, with the aim of them providing more 8   h of care per solar day. Parents are taught to feed, bathe, clothes, and hold their baby as well as providing skin-to-pare intendance and documenting in the medical charts. Parents also attend rounds and receive one-to-one specialist education about caring for their infant equally needed (O'Brien et al., 2013).

The other major parent–child interaction interventions used with the NICU environment are kangaroo care and NIDCAP, which have been described in Section "NICU-based ecology enrichment interventions." Both kangaroo care and NIDCAP interventions take evidence to show they positively foster relationships in the short term. Kangaroo care is known to also improve parental mental health. The evidence for these interventions is summarized in Table 23.three.

Table 23.iii. Parent–child interaction interventions evidence base

Intervention Population Evidence Consequence Testify warning and Form

Dark-green, "Go" because loftier-quality evidence indicates effectiveness; RED, "STOP" because high-quality testify indicates harm or ineffectiveness; YELLOW, "MEASURE" considering insufficient evidence exists to be certain about whether the child volition benefit.

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Neonatal Neurology

Dearbhail Bracken-Roche , ... Eric Racine , in Handbook of Clinical Neurology, 2019

Awarding of the exercise principle of partnership

Partnership refers to an approach where there is a genuine collaborative word about the goals of intendance and where such collaboration is reflected in the communication and the style of the clinician (e.g., shared decision making) (Cai et al., 2015). A partnered approach recognizes the valuable noesis and feel brought past parents in discussions at the bedside (Richards et al., 2013). According to this principle, parents are an intrinsic and important actor in the care team, which can be accommodated following a model of "shared expertise" allowing parents to make meaningful contributions (Mulley et al., 2012).

The call for partnered care and shared conclusion-making approaches has been voiced for over 3 decades (Makoul and Clayman, 2006 ) and is an integral aspect of family unit-centered care ( Barry and Edgman-Levitan, 2012), patient-partner care (Karazivan et al., 2015), and "relationship-centered care" (Beach et al., 2006) where it holds a clear and unequivocal relevance to upstanding practise (Committee on Infirmary Care and Institute for Patient and Family unit-Centered Care, 2012). Notwithstanding, full general obstacles to such approaches remain (due east.m., low literacy and numeracy skills, need for tools like decisional aids, disincentive of reimbursement structures) and their exploration in the NICU setting has merely just begun (Fiks and Jimenez, 2010; Gooding et al., 2011; Galarza-Winton et al., 2013; O'Brien et al., 2013; Cai et al., 2015). In the context of neurologic prognosis, one of the central challenges of a partnership arroyo concerns the joint discussion between parents and clinicians about the desirable medical outcomes given a range of possible disabilities and the unlike interpretations of what medical outcomes and disability hateful with respect to quality of life, from the detail perspective of parents.

A partnership arroyo should exist sensitive to strategies that assist empower parents and make them feel more comfortable, including feeling that their values and beliefs are heard, respected, and built upon to back up their coping abilities (Pepper et al., 2012). However, challenges to partnership can arise when parents' decision-making diverges considerably from the clinician'southward perspective on the child'due south best pick. As this example highlights, parents empowered to take an agile role in their kid's medical intendance can also pursue unproven and potentially harmful therapies for their kid. Clinicians may wonder whether they have an ethical responsibility to support or forestall such a decision, and whether engaging in partnered intendance requires them to support a handling which they would not endorse or recommend. Working in partnership with parents does not mean that the clinician must actively endorse their decisions or behavior, but it does mean that they must work collaboratively with them to understand and critically examine unlike options. At that place are many reasons why parents may choose unproven therapies for their children, but almost all these therapies correspond both an opportunity to gain a sense of control over their child's wellness and an endeavour to improve their quality of life (Kemper et al., 2008). Drawing on the considerations of positionality highlighted past the principle of humility (earlier), clinicians in such situations must higher up all recognize and be sensitive to these powerful motivating factors and avoid discussing unproven therapies in ways that communicate a lack of concern for or sensitivity to the family unit's needs and perspectives (Bell et al., 2011). The American Academy of Pediatrics further recommends an arroyo for clinicians counseling parents considering unproven therapies that aligns well with the principle of partnership, including actively informing themselves and sharing this information with parents, evaluating the scientific merits of the arroyo and identifying risks or harmful effects, providing families with information on a range of therapeutic options, empowering families to evaluate data almost treatment approaches themselves (e.grand., informing them most placebo furnishings, educating them to identify exaggerated claims), and offering to assist in monitoring the kid and evaluating their response if an unproven therapy is ultimately adopted by the parents (Kemper et al., 2008).

Clinicians tin prepare for meetings with parents using some of the bachelor existing resources to appoint with parents in the neonatal context (Janvier et al., 2014) or those suggested to engage surrogate decision makers (Janvier et al., 2014; Cai et al., 2015). There are several advice strategies that can exist adopted to assist facilitate such a partnership. For case, sitting down is a practice supported by many authors (Kopelman, 2006; Kahn, 2008; Orzalesi and Aite, 2011; Janvier et al., 2014; Janvier and Lantos, 2014; LeGrow et al., 2014). Informal communication ("chatting") can reflect a humane and appreciated class of exchange, which sets a good climate for collaboration and partnering (Guillaume et al., 2013). Parent-friendly ways of providing information include using plain language and presenting statistical information using accented take a chance rather than relative risk. Further, testify suggests that the utilise of pictographs to communicate risk and benefit information (Fagerlin et al., 2011) and providing written data (Xafis et al., 2015) is helpful to parents. Visual aids (e.g., risks about preterm infants) (Kakkilaya et al., 2011) and more technologically savvy avenues (e.m., computerized uncomplicated graphic representations of aggregated adventure of bloodshed for parents) (Frize et al., 2013) accept also been tried with some success.

Partnership also brings the possibility of benefiting from the expertise of parents (a practice recommended by the American Academy of Pediatrics since 2012) (Committee on Hospital Care and Plant for Patient and Family unit-Centered Care, 2012). Parent-to-parent mentoring and support can take many dissimilar forms, such equally ane-to-one partnering, parent support groups, visiting parents, or veteran parents. Preparation programs for parents accept been put in place and the overall experience has been positive (Levick et al., 2014). Another strategy to foster partnership and harness parental expertise involves creating office-time parent-to-parent managers selected for their prior experience as the parent of an infant in the NICU. This approach has been suggested to be useful in supporting family unit-centered care and in formalizing corresponding services for parents (Voos et al., 2015). Similarly, the recently proposed family integrated care (FIC) model includes veteran parents in the design of the model of care and as a resource for parents in the NICU (peer-to-peer back up). The veteran parents had a positive affect on comfort and hope gained from shared experiences, facilitation of bonding, and provided psychological support and parent-to-parent pedagogy, leading to new parents' increased conviction in caring for their infant (Macdonell et al., 2013). This approach tin can create a true bridge between the family'due south culture and that of the clinical institution, unit, or team.

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Concrete Disability and Body Epitome in Children

M.C. Lawlor , G.L. Elliot , in Encyclopedia of Body Epitome and Man Advent, 2012

Biographical Sketches

Mary C. Lawlor is Manager of Inquiry and Professor at the Division of Occupational Science and Occupational Therapy at the Herman Ostrow School of Dentistry, University of Southern California. She is known for her work in the areas of pediatric occupational therapy, maternal and child health, family-centered care, interdisciplinary models of service delivery, and ethnographic research. She graduated magna cum laude from Boston University in occupational therapy and received her master'due south degree in instruction from Harvard University. She earned her ScD in therapeutic studies from Boston Academy and is a beau of the American Occupational Therapy Association. She has served as Principal Investigator for an interdisciplinary longitudinal ethnographic research projection funded by the National Center for Medical Rehabilitation Research, National Establish of Child Wellness and Human Development, National Institutes of Health. This projection focuses on African American children with special health-care needs, their families, and the practitioners who serve them and examines services, health disparities, and developmental processes. She has also received grants from the Maternal and Child Health Bureau, the US Section of Education, and the American Occupational Therapy Foundation.

Michelle Fifty. Elliot is a current PhD student in occupational science at the University of Southern California, Los Angeles. She graduated from the University of Alberta with a bachelor of scientific discipline degree in psychology, which she followed with a diploma in therapeutic recreation from Mount Royal College (now University). She received her master'south degree in occupational therapy from McMaster University. Her clinical work as an occupational therapist was exclusively in mental wellness, most recently with adolescents and adults with eating disorders in a dedicated handling program in Canada. Her clinical and research interests include spirituality, the therapeutic and reflexive utilise of self, and the embodiment and organization of experience.

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