Search

Children with medical complexity (CMC) are a medically fragile subset of children who rely on parental caregivers for substantial care needs. Caregivers of CMC often experience adverse health outcomes such as depression and anxiety, sleep deprivation, financial hardships, and social isolation. Caregivers of CMC are at risk of premature mortality, which is thought to be mediated by chronic and elevated stress, as well as psychiatric morbidity risk. Access to mental health care, where the needs of both the caregiver and child are considered, can enable caregivers to meet high caregiving demands and improve both child and caregiver outcomes. We describe the Caring for the Caregiver (C4C) model, a novel integrated stepped care model consisting of collaboration between a psychiatrist and a pediatric complex care program. This model provides support in 3 steps: 1) early identification of distress, 2) social work assessment, intervention and psychotherapy, and 3) psychiatric care, including diagnosis or medication initiation, for caregivers of CMC. This innovative model will be the first to embed support for the mental health needs of caregivers of CMC within a pediatric team, facilitating access to psychiatric care and serving as a foundation for future integrated stepped care models.

Children with medical complexity may be at elevated risk of experiencing child maltreatment and child welfare system involvement, though empirical data are limited. This study examined the extent of child welfare system involvement among children with medical complexity and investigated associated health and social factors. A retrospective chart review of children with medical complexity (N = 208) followed at a pediatric hospital-based complex care program in Canada was conducted. Descriptive statistics and odds ratios using logistic regression were computed. Results showed that nearly one-quarter (23.6%) had documented contact with the child welfare system, most commonly for neglect; of those, more than one-third (38.8%) were placed in care. Caregiver reported history of mental health problems (aOR = 3.19, 95%CI = 1.55–6.56), chronic medical conditions (aOR = 2.86, 95%CI = 1.09–7.47), and interpersonal violence or trauma (aOR = 17.58, 95%CI = 5.43–56.98) were associated with increased likelihood of child welfare system involvement, while caregiver married/common-law relationship status (aOR = 0.35, 95%CI = 0.16–0.74) and higher number of medical technology supports (aOR = 0.75, 95%CI = 0.57–0.99) were associated with decreased likelihood. Implications for intervention and prevention of maltreatment in children with high healthcare needs are discussed.

BACKGROUND AND OBJECTIVES Caregivers of children with medical complexity (CMC) face many stressors related to their child’s medical condition(s). Financial stress and its impact on housing has been reported to be a challenge among this population. However, unique housing challenges specific to CMC, including disability accommodations in the home and housing space and layout, have yet to be examined in the literature. METHODS We conducted 20 individual semistructured interviews with parents of CMC. Interviews were recorded, coded, and analyzed by using thematic analysis to emphasize, examine, and record patterns of meaning within the data. RESULTS Eighteen mothers and 2 fathers participated in individual interviews. Two major themes and subthemes (in parentheses) were identified: (1) the impact of health on housing (housing preferences, housing possibilities, and housing outcome as a trade-off) and (2) the impact of housing on health (health of the caregiver and health of the child). Parents had preferences regarding the location and layout of their home specific to their child’s illness and medical needs. In addition, parents indicated their child’s illness affected their income and home ownership status, which in turn shaped their housing possibilities. The location and layout of the family home was often the result of a trade-off between the caregiver’s housing preferences and possibilities. CONCLUSIONS Housing outcomes among CMC are often the result of a trade-off between housing preferences and possibilities, both of which are influenced by the child’s health status. Policy changes targeting housing accessibility and affordability are vital to support the health of CMC.

BACKGROUND AND OBJECTIVES:Children with medical complexity (CMC) often have multiple life-limiting conditions with no unifying diagnosis and an unclear prognosis and are at high risk for morbidity and mortality. Advance care planning (ACP) conversations need to be uniquely tailored to this population. Our primary objective for this study was to develop an in-depth understanding of the ACP experiences from the perspectives of both parents and health care providers (HCPs) of CMC.METHODS:We conducted 25 semistructured interviews with parents of CMC and HCPs of various disciplines from a tertiary pediatric hospital. Interview guide questions were focused on ACP, including understanding of the definition, positive and negative experiences, and suggestions for improvement. Interviews were conducted until thematic saturation was reached. Interviews were audio recorded, transcribed verbatim, coded, and analyzed using content analysis.RESULTS:Fourteen mothers and 11 HCPs participated in individual interviews. Interviews revealed 4 major themes and several associated subthemes (in parentheses): (1) holistic mind-set, (2) discussion content (beliefs and values, hopes and goals, and quality of life), (3) communication enhancers (partnerships in shared decision-making, supportive setting, early and ongoing conversations, consistent language and practice, family readiness, provider expertise in ACP discussions, and provider comfort in ACP discussions), and (4) the ACP definition.CONCLUSIONS:Family and HCP perspectives revealed a need for family-centered ACP for CMC and their families. Our results aided the development of a family-centered framework to enhance the delivery of ACP through a holistic mind-set, thoughtful discussion content, and promoting of conversation enhancers.

BACKGROUND: Medical technologies and technological advances have resulted in a growing number of children with medical complexity (CMC), many of whom would not have survived previously. Despite these advances CMC are still at high risk of morbidity and mortality during childhood. Advance Care Planning (ACP) is defined by the Canadian Paediatric Society as “the process of discussing life-sustaining treatments and establishing long-term care goals.” Currently the pediatric literature regarding ACP has been largely limited to the intensive care setting and the oncology population. There is a dearth of information focussing on ACP for CMC and that includes bereaved family caregiver’s views. Bereaved caregivers have the unique ability to reflect upon ACP through their child’s whole disease course and end of life experience. OBJECTIVES: To explore the ACP experiences of bereaved family caregivers of CMC who have experienced the entire illness trajectory, including their child’s death. DESIGN/METHODS: A qualitative approach was applied, allowing for in-depth data collection through semi-structured interviews. Purposive sampling was used to recruit bereaved caregivers of CMC until thematic saturation was reached. The interview guide was developed through expert consultation and was refined iteratively throughout the interviews. Questions assessed caregivers’ experiences with ACP discussions, their feelings about those conversations and their perceptions about whether ACP affected the end of life experience. Each participant provided written, informed consent and interviews were recorded and transcribed verbatim. Three research team members used content analysis to independently code the interviews. RESULTS: 13 bereaved caregivers of CMC completed 12 interviews ranging from 40–80 minutes in length. All caregivers of CMC had participated in ACP discussions and sometimes found them to be overwhelming and frustrating in the moment. However, all caregivers reported that they now understand and appreciate the importance of the discussions. Four major themes emerged from the data describing caregiver’s feelings and experiences regarding Advance Care Planning: 1) influencers of the ACP experience, 2) positive experiences, 3) negative experiences and 4) the influence of ACP on end of life. CONCLUSION: Bereaved caregivers provided a unique perspective, highlighting the importance and the benefits of ACP discussions. They also revealed various ways in which ACP conversations could be improved. These insights will be helpful in guiding educational tools for health care providers working with CMC in the future.

Background Children with medical complexity (CMC) are defined by their medical fragility, dependence on assistive technology and substantial care needs. Family caregivers of CMC have unique challenges, such as prolonged hospitalizations and poor care coordination, which result in extensive caregiver stress. There is a great need to quantify the level of psychosocial stress and resilience in these caregivers to allow for appropriate allocation of health care resources. The Psychosocial Assessment Tool (PAT) is a brief parent-reported screening tool for measuring psychosocial risk in caregivers of pediatric populations. This is the first study to use the PAT in children with medical complexity. Objectives To quantify psychosocial risk in family caregivers of children diagnosed with medical complexity. To identify predictors of caregiver distress based on their sociodemographic factors. It was hypothesized that the extensive health demands of CMC will result in high amounts of chronic, ongoing caregiver distress relative to the previously studied pediatric populations. Design/Methods This cross-sectional study was conducted at The Hospital for Sick Children, Toronto, Canada. Family caregivers of children with medical complexity completed the PAT questionnaires during regularly scheduled Long-Term Ventilation and Complex Care clinic visits. Based on the overall PAT scores, caregivers were stratified as “Universal” low risk ( Results 136 [103 females (76%)] family caregivers completed the study. Mean PAT score was 1.17 (SD = 0.740). 61 (44.85%) caregivers were classified as Universal risk, 60 (44.12%) as Targeted risk, and 15 (11.03%) as Clinical risk. Compared to previously studied pediatric populations, our CMC have the second-highest overall PAT scores, which are also substantially weighted towards the higher risk categories (Table 1). Multiple linear regression analysis demonstrated that subjective report of financial hardship by caregivers is a significant predictor of total PAT scores (p < 0.05). Conclusion Family caregivers of children with medical complexity report PAT scores amongst the highest of all pediatric populations. These caregivers experience significant psychosocial distress, demonstrated by larger proportions of caregivers in the Targeted and Clinical risk categories. Therefore, psychosocial interventions including financial assistance are urgently needed in this population.

Key Points Question How do bereaved family caregivers describe their experiences with advance care planning for children with medical complexity? Findings In this qualitative study that included 13 parents of children with medical complexity, participants emphasized the importance of involving trusted health care professionals and incorporating parental expertise to guide advance care planning. The relative shock parents experienced regarding the timing of the child’s death, despite recurrent experiences with life-threatening events, and the multiple losses they experienced when the child with a large health care team died were important themes. Meaning The perspectives of bereaved parents in this study revealed important themes that should be considered for future study of advance care planning for children with medical complexity., This qualitative study explores the experiences of bereaved family caregivers with advance care planning for children with medical complexity., Importance Advance care planning (ACP) is the process of discussing values and preferences for care to help inform medical decision-making. Children with medical complexity (CMC) often have a shortened life span with an unpredictable clinical course and timing of death; however, there is a paucity of literature that describes the experience of ACP from the perspective of bereaved family caregivers of CMC. Objective To explore the experiences of bereaved family caregivers with ACP for CMC. Design, Setting, and Participants This qualitative study included 12 interviews with 13 bereaved family caregivers of CMC whose deaths had occurred in the 5 years before study commencement (2013-2018). Participants were recruited at a single tertiary care pediatric center; CMC were treated by the Complex Care or Long-term Ventilation clinic in Toronto, Ontario, Canada. Data were collected from July to October 2018. Thematic analysis with an inductive approach was used. Exposures Qualitative interviews were conducted using purposive sampling of bereaved family caregivers using semistructured interviews that were recorded and transcribed. Interviews were conducted until saturation was reached. Main Outcomes and Measures Transcripts were analyzed to create themes that characterized caregiver experiences with ACP. Results A total of 13 family caregivers were interviewed in 12 interviews, all of whom were parents (12 [92%] women, 1 [8%] man) of a deceased child (aged 7 months to 12 years). Themes were divided in the 3 following categories, which align with the Donabedian model for health service quality: (1) structure of care, (2) ACP process, and (3) end-of-life experience. Notable subthemes for this population included the importance of accounting for parental expertise in the child’s care, recurrent experiences with life-threatening events, relative shock of the timing of death, and the multiple losses that caregivers experienced. Conclusions and Relevance In this study, parental experiences revealed that there are key aspects of the structure of the child’s care, process around ACP, and end-of-life care experiences that provide important reflections on ACP that warrant future study.

BACKGROUND Children with medical complexity (CMC), are defined by at least one chronic condition, functional limitation requiring technology support, multiple subspecialist involvement, and high healthcare utilization. A potentially significant social determinant that has yet to be examined in this population is that of “housing need.” According to the Canada Mortgage and Housing Corporation, “housing need” refers to housing that is crowded, unaffordable, or in need of major repairs. Given the known associations between housing and health, we hypothesize that housing need could be particularly relevant in CMC. Population-specific housing considerations may include in-home medical services, housing space, and disability accommodations. OBJECTIVES 1) Determine the prevalence of housing need in families with CMC and 2) Explore the experience and meaning of housing need of caregivers of CMC. DESIGN/METHODS We conducted a mixed methods study using questionnaires and semi-structured interviews. Recruitment occurred through a tertiary paediatric hospital. Research ethics board approval was obtained. All participants were English-speaking primary caregivers of CMC living in the same household. Questionnaires were completed in person, by phone, or online via REDCap, a secure data collection application. Questionnaires explored safety, affordability, and accommodations and were analyzed using descriptive statistics. Following the questionnaire, participants were invited to be interviewed in person or by phone. Interview questions were developed iteratively and were analyzed using grounded theory. RESULTS Of the 354 eligible caregivers, 93 participated in the questionnaire. A total of 36 caregivers (40%) reported some difficulties paying for housing each month. In addition, 56 participants (62%) described unmet need for accommodations (i.e. a lift, toilet accommodations, etc.). A total of 65 participants (83%) reported that their child’s condition(s) affected their preferred housing location, while 55 participants (70.5%) felt it affected their preferred housing type. Of the fifteen interviews completed, several themes emerged including limited housing options for families with CMC and financial, physical, and mental health consequences of housing challenges. In addition, caregivers felt counseling was lacking on 1) safe evacuation and 2) housing requirements, such as space and equipment, as children age. CONCLUSION This is the first in-depth exploration of housing need amongst families of CMC. Challenges identified include affordability, disability accommodations, and restrictions on housing type and location due to children’s illnesses. Clinicians can support families of CMC by offering counseling on evacuation planning and common housing requirements for CMC.

Researchers have observed that attempts to suppress a thought cause either an immediate increase in the occurrence of the thought (i.e. immediate enhancement effect) or a delayed increase in the occurrence of the thought (i.e. rebound effect). In this study, we examined whether suppression of a personally-relevant, emotional thought item (i.e. a spider to spider phobics) results in an immediate enhancement or a rebound effect. Forty-eight spider phobics were randomly assigned to either a suppression group or a control group. Subjects spent three 5-min periods alone monitoring their thoughts. During the first period, subjects in both groups were instructed to 'think about anything'. During the second period, subjects in the suppression group were instructed 'not to think of a spider', whereas subjects in the control group were instructed to 'think about anything'. During the third period, subjects in both groups were instructed to 'think about anything'. The number of spider-related thoughts was recorded for each period. Results from the second period failed to support an immediate enhancement effect. Evidence for a rebound effect, however, was obtained in the third period. The theoretical and clinical implications of these findings are discussed.