120 The Experience of Housing Need Amongst Families Caring for Children with Medical Complexity: A Qualitative Study

2021 ◽  
Vol 26 (Supplement_1) ◽  
pp. e85-e88
Author(s):  
Clara Moore ◽  
Kara Grace Hounsell ◽  
Arielle Zahavi ◽  
Danielle Arje ◽  
Natalie Weiser ◽  
...  
Keyword(s):  
Qualitative Study ◽  
Future Research ◽  
Complex Care ◽  
Housing Situation ◽  
Children With Medical Complexity ◽  
Trade Off ◽  
Housing Preferences ◽  
Medical Needs ◽  
Medical Complexity ◽  
The Impact

Abstract Primary Subject area Complex Care Background Caregivers of children with medical complexity (CMC) face many financial, social and emotional stressors related to their child’s medical condition(s). Previous research has demonstrated that financial stress among this population can have an impact on their housing situation. Families of CMC may face other unique housing challenges such as disability accommodations in the home and housing space and layout. Objectives The primary aim of this study was to explore families’ perspectives and experiences of housing need, and its relationship to their child’s health status as it pertains to CMC. Design/Methods We conducted a qualitative study using semi-structured interviews to identify themes surrounding families of CMC’s experiences of housing need. Parents of CMC were recruited through purposive sampling from the Complex Care Program at a tertiary pediatric health sciences centre. Recruitment ceased when thematic saturation was reached, as determined by consensus of the research team. Interviews were recorded, transcribed verbatim, coded, and analyzed using thematic analysis. Results Twenty parents completed the interview, of whom 89% were mothers and 42% identified a non-English language as their first language. Two major themes and five subthemes (in parentheses) were identified: 1) the impact of health on housing (housing preferences, housing possibilities, housing outcome as a trade-off) and 2) the impact of housing on health (health of the caregiver, health of the child). Some parents reported that their child’s medical needs resulted in specific preferences regarding the location and layout of their home. Parents also indicated that their caregiving role often affected their income and home ownership status, which in turn, affected their housing possibilities. Thus, the housing situation (location and layout of the home) was often the result of a trade-off between the parent’s housing preferences and possibilities. Conclusion Housing is a recognized social determinant of health. We found that among CMC, health also appears to be a significant determinant of housing as families reported that the health of their child impacted their housing preferences and the options available to them (possibilities). To support the health of CMC and their families, policies targeting improved access to subsidized housing, improved sources of funding and regulations allowing families who rent to make accessibility changes are vital. Future research should investigate the impact of household income on housing need and identify interventions to support appropriate housing for CMC.

scholarly journals Complex care for kids Ontario: protocol for a mixed-methods randomised controlled trial of a population-level care coordination initiative for children with medical complexity

BMJ Open ◽  
2019 ◽  
Vol 9 (8) ◽  
pp. e028121 ◽  
Author(s):  
Julia Orkin ◽  
Carol Y Chan ◽  
Nora Fayed ◽  
Jia Lu Lilian Lin ◽  
Nathalie Major ◽  
...  
Keyword(s):  
Randomised Controlled Trial ◽  
Controlled Trial ◽  
Population Level ◽  
Complex Care ◽  
Coordinated Care ◽  
Children With Medical Complexity ◽  
Medical Needs ◽  
Care Plans ◽  
Medical Complexity ◽  
Randomised Controlled

IntroductionTechnological and medical advances have led to a growing population of children with medical complexity (CMC) defined by substantial medical needs, healthcare utilisation and morbidity. These children are at a high risk of missed, fragmented and/or inappropriate care, and families bear extraordinary financial burden and stress. While small in number (<1% of children), this group uses ~1/3 of all child healthcare resources, and need coordinated care to optimise their health. Complex care for kids Ontario (CCKO) brings researchers, families and healthcare providers together to develop, implement and evaluate a population-level roll-out of care for CMC in Ontario, Canada through a randomised controlled trial (RCT) design. The intervention includes dedicated key workers and the utilisation of coordinated shared care plans.Methods and analysisOur primary objective is to evaluate the CCKO intervention using a randomised waitlist control design. The waitlist approach involves rolling out an intervention over time, whereby all participants are randomised into two groups (A and B) to receive the intervention at different time points determined at random. Baseline measurements are collected at month 0, and groups A and B are compared at months 6 and 12. The primary outcome is the family-prioritized Family Experiences with Coordination of Care (FECC) survey at 12 months. The FECC will be compared between groups using an analysis of covariance with the corresponding baseline score as the covariate. Secondary outcomes include reports of child and parent health outcomes, health system utilisation and process outcomes.Ethics and disseminationResearch ethics approval has been obtained for this multicentre RCT. This trial will assess the effect of a large population-level complex care intervention to determine whether dedicated key workers and coordinated care plans have an impact on improving service delivery and quality of life for CMC and their families.Trial registration numberNCT02928757.

scholarly journals 99 Impact of COVID-19 pandemic on children with medical complexity: Parental perspective about the role of a Complex Care program

2021 ◽  
Vol 26 (Supplement_1) ◽  
pp. e71-e72
Author(s):  
Louis-Philippe Thibault ◽  
Maria Marano ◽  
Lydia Saad ◽  
Marie-Joëlle Doré-Bergeron ◽  
Karine Couture ◽  
...  
Keyword(s):  
Problem Solving ◽  
Tertiary Care ◽  
Care Program ◽  
Complex Care ◽  
Children With Medical Complexity ◽  
Parental Experience ◽  
Phone Calls ◽  
Medical Complexity ◽  
The Media ◽  
The Impact

Abstract Primary Subject area Complex Care Background The COVID-19 pandemic led to major and rapid organizational and structural healthcare changes including a switch from ambulatory services towards telemedicine and decreased access to home services. Children with medical complexity (CMC) require many medical services and are generally prone to infectious complications. Little is known about the impact of the pandemic on families of CMC. Understanding how CMC families experience the COVID-19 pandemic is essential to tailor healthcare services to answer their needs more effectively. Objectives We explored parental experience of CMC during the COVID-19 pandemic, and how the complex care program (CCP) answers their new needs. Design/Methods This qualitative study was conducted between July 2020 and January 2021 in a tertiary care pediatric university hospital centre. Semi-structured interviews were done with parents of CMC, admitted in the CCP at least 1 year prior to the beginning of the pandemic. The interview guide was co-constructed by physicians and nurses from the CCP. Interviews were transcribed verbatim and analyzed using NVivo. Data were organized into codes and categories. Thematic content analysis was performed by grouping categories and highlighting emerging themes. Results Eleven families (14 parents – 4 fathers, including 3 couples) were interviewed. The first wave of the pandemic seemed to have caused important uncertainty and anxiety amongst parents of CMC. Almost all the parents reported cancelling numerous appointments in order to avoid coming to the hospital at all costs. Some parents, worrying specifically about the fragility of their child, stopped working and stayed home to reduce transmission risks. Fear of facing shortages in medications, nutritional supplements and medical equipment for home care was frequently expressed. They did not express worries about the de-confinement periods. The support provided by the CCP’s staff was greatly appreciated, namely active problem-solving via phone calls, videoconferences, emails and pictures, leading to fewer hospital visits and less need to seek emergency care. Some reported that more general communication from the CCP (e.g., a weekly information email), would have helped to interpret the overwhelming amount of information from the media. Parents expressed a strong desire to maintain telemedicine services after the pandemic. Conclusion The COVID-19 pandemic brought additional worries to parents of CMC enrolled in CCPs, including fear of shortages and virus transmission. Direct communication with the CCP and remote problem-solving were greatly appreciated by families. Improvement to follow-up include finding ways to help interpreting data from the media.

scholarly journals 2240 Shared decision making in child health: A qualitative study of parents of children with medical complexity

2018 ◽  
Vol 2 (S1) ◽  
pp. 87-87
Author(s):  
Jody Lin ◽  
Catherine Clark ◽  
Bonnie Halpern-Felsher ◽  
Lee M. Sanders
Keyword(s):  
Decision Making ◽  
Shared Decision Making ◽  
Pediatric Population ◽  
Decision Quality ◽  
Future Research ◽  
Shared Decision ◽  
Children With Medical Complexity ◽  
Quality Health Care ◽  
Medical Complexity ◽  
Quality Health

OBJECTIVES/SPECIFIC AIMS: Children with medical complexity (CMC) comprise less than 5% of the pediatric population and over 40% of pediatric spending, yet receive poorer quality health care compared with other children. The American Academy of Pediatrics recently identified shared decision making (SDM) as a key quality indicator for CMC, but there is no consensus model for SDM in CMC. Objective: To create a model of SDM from perspectives of parents of CMC. METHODS/STUDY POPULATION: Interviews with parents of CMC explored SDM preferences and experiences. Eligible parents were ≥18 years old, English-speaking or Spanish-speaking, with a CMC <12 years old. Interviews were recorded, transcribed, and analyzed by 3 independent coders for shared themes using grounded theory. RESULTS/ANTICIPATED RESULTS: Interviews were with 31 parents [26 English speakers, median parent age 33 years (SD 11), median child age 3 years (SD 3.6)] in inpatient and outpatient settings. We identified specific, unique components of SDM that affect decision quality, the alignment of a decision with the parent’s preferences and values. Themes included: concerns about uncertainty of the child’s life trajectory, conflict during parent-provider communication, health system factors such as provider schedule; parent agency, and the influence of the source of information. DISCUSSION/SIGNIFICANCE OF IMPACT: Our findings provide specific components of SDM unique to CMC that can inform future research and interventions to support SDM for parents and providers of CMC.

scholarly journals Parent Perspectives During Hospital Readmissions for Children With Medical Complexity: A Qualitative Study

2020 ◽  
Vol 10 (3) ◽  
pp. 222-229 ◽  
Author(s):  
Jana C. Leary ◽  
Rachel Krcmar ◽  
Grace H. Yoon ◽  
Karen M. Freund ◽  
Amy M. LeClair
Keyword(s):  
Qualitative Study ◽  
Hospital Readmissions ◽  
Parent Perspectives ◽  
Children With Medical Complexity ◽  
Medical Complexity

scholarly journals ARE CHILDREN WITH MEDICAL COMPLEXITY (CMC) MEETING TRANSITION-RELATED MILESTONES BEFORE ENTERING THE ADULT HEALTHCARE SYSTEM? A CROSS-SECTIONAL CHART REVIEW

2018 ◽  
Vol 23 (suppl_1) ◽  
pp. e31-e31
Author(s):  
Taylor McKay ◽  
Christopher Chung ◽  
Julia Orkin ◽  
Sherri Adams
Keyword(s):  
Healthcare System ◽  
Chart Review ◽  
Complex Care ◽  
Critical Transition ◽  
Children With Medical Complexity ◽  
Cross Sectional ◽  
Key Informants ◽  
Related Data ◽  
Care Plans ◽  
Medical Complexity

Abstract BACKGROUND Medical and technological advances have resulted in a growing cohort of children with medical complexity (CMC) who are reaching adulthood. These children are diagnostically heterogenous and require frequent hospitalizations, intensive community services, and medical technology at home to maintain their health. Transitioning CMC to the adult healthcare system has proven challenging for patients and their caregivers, who are comfortable and empowered in the paediatric setting. This multi-faceted process requires the expertise of an interdisciplinary team and one transition can take up to 100 hours of coordination. Although each patient is diagnostically unique, common requirements for transition arise. A standardized approach to transition would empower caregivers to be better advocates for CMC in the adult healthcare system. In order to implement an approach, a baseline understanding of this growing population is required. OBJECTIVES 1. To obtain demographic, medical, and transition-related data for CMC approaching transition to assess whether current transition practices are aligned with critical transition milestones and events, as detailed by key informants 2. To identify optimal targets for intervention in the transition process and produce a standardized toolkit to address gaps DESIGN/METHODS This was a cross-sectional chart review study. It was conducted at one of the largest Canadian complex care programs, which follows 400+ children. Prior to chart review, critical transition-related parameters and milestones were ascertained from interviews with key informants, such as transition coordination experts, the medical lead of the complex care program, family physicians, social workers, and nurse practitioners, who are the most involved with transitioning patients clinically. This previously siloed knowledge was centralized and converted into a standardized clinical toolkit including an age-stratified checklist and caregiver handouts. Having determined key transition parameters, 51 CMC were identified between the ages of 14 and 17 (inclusive) and were included in the study. Demographic, medical, and transition-related data was collected from care plans and clinical notes. Data was subsequently stratified by age and care location. Descriptive statistics were generated for each key transition parameter. RESULTS This cohort of 51 CMC (51% male, 49% female) displayed steady growth between years. On average, these CMC had 9 diagnoses, 6 subspecialists, actively used 8 medications, and were dependent on one home-technology. Only 50% of patients had discussed transition-related topics and 76% of patients did not have a designated transition lead. Although discussion of transition increased with age, many crucial transition-related topics, both in medical and social categories, were not routinely addressed. From a medical perspective, over 40% of patients had not found a family physician, who serve as the primary medical care coordinators in the adult healthcare system. In the final year before transition, less than 50% of patients had been referred to new adult subspecialists and of these patients, half had not met these new providers. Adult social support programs, which provide critical funding for medications, respite, and home care, represent the other major component of transition. At age 17, 50% of patients had not applied for any provincial disability and respite funding, which can take up to 2 years to receive approval for. CONCLUSION This study has identified areas for improvement in medical and social aspects of transition-related planning that may benefit from a standardized clinical toolkit. These are highly complex patients who are not meeting transition-related milestones before turning 18, and are entering the adult healthcare system unprepared. Without approved funding and established medical follow-up, patients and caregivers suffer. Due to the highly heterogenous nature of this patient population, a standardized approach to transition, in tandem with further research and education, is needed.

Does Anybody Read SMS-Advertising?

2010 ◽  
Vol 6 (2) ◽  
pp. 13-29 ◽  
Author(s):  
Claire Gauzente
Keyword(s):  
Qualitative Study ◽  
Empirical Study ◽  
Quantitative Study ◽  
Representative Sample ◽  
Second Step ◽  
Future Research ◽  
Negative Attitudes ◽  
Ambivalent Behaviour ◽  
The Impact

This study explores mobile users’ perceptions about SMS advertising. The empirical study uses a double methodology. First, a qualitative study using the Q-method is conducted. Qualitative analysis reveals that negative attitudes are commonly shared, and that ad-clutter is perceived critically. Therefore, in a second step, a quantitative study is adopted to assess the impact of attitudes towards SMS advertising and perceived ad-clutter on reading behaviour. The main test is conducted over a representative sample of 302 mobile owners. From a behavioural standpoint, the results show ambivalent behaviour in most cases. In particular, the role of perceived ad-clutter is ascertained. Implications for practice and directions for future research are discussed.

scholarly journals Exploring the usefulness of comprehensive care plans for children with medical complexity (CMC): a qualitative study

2013 ◽  
Vol 13 (1) ◽  
Author(s):  
Sherri Adams ◽  
Eyal Cohen ◽  
Sanjay Mahant ◽  
Jeremy N Friedman ◽  
Radha MacCulloch ◽  
...  
Keyword(s):  
Qualitative Study ◽  
Comprehensive Care ◽  
Children With Medical Complexity ◽  
Care Plans ◽  
Medical Complexity

scholarly journals Feasibility of implementing systematic social needs assessment for children with medical complexity

2021 ◽  
Vol 2 (1) ◽  
Author(s):  
David Y. Ming ◽  
Kelley A. Jones ◽  
Elizabeth Sainz ◽  
Heidie Tkach ◽  
Amy Stewart ◽  
...  
Keyword(s):  
Decision Making ◽  
Needs Assessment ◽  
Shared Decision Making ◽  
Tertiary Care ◽  
Social Needs ◽  
Complex Care ◽  
Shared Decision ◽  
Children With Medical Complexity ◽  
Implementation Outcomes ◽  
Medical Complexity

Abstract Background Children with medical complexity (CMC) have inter-related health and social needs; however, interventions to identify and respond to social needs have not been adapted for CMC. The objective of this study was to evaluate the feasibility of implementing social needs screening and assessment within pediatric complex care programs. Methods We implemented systematic social needs assessment for CMC (SSNAC) at two tertiary care centers in three phases: (1) pre-implementation, (2) implementation, and (3) implementation monitoring. We utilized a multifaceted implementation package consisting of discrete implementation strategies within each phase. In phase 1, we adapted questions from evidence-informed screening tools into a 21-item SSNAC questionnaire, and we used published frameworks to inform implementation readiness and process. In phases 2–3, clinical staff deployed the SSNAC questionnaire to parents of CMC in-person or by phone as part of usual care and adapted to local clinical workflows. Staff used shared decision-making with parents and addressed identified needs by providing information about available resources, offering direct assistance, and making referrals to community agencies. Implementation outcomes included fidelity, feasibility, acceptability, and appropriateness. Results Observations from clinical staff characterized fidelity to use of the SSNAC questionnaire, assessment template, and shared decision-making for follow-up on unmet social needs. Levels of agreement (5-point Likert scale; 1 = completely disagree; 5 = completely agree) rated by staff for key implementation outcomes were moderate to high for acceptability (mean = 4.7; range = 3–5), feasibility (mean = 4.2; range = 3–5), and appropriateness (mean = 4.6; range = 4-5). 49 SSNAC questionnaires were completed with a 91% response rate. Among participating parents, 37 (76%) reported ≥ 1 social need, including food/nutrition benefits (41%), housing (18%), and caregiver needs (29%). Staff responses included information provision (41%), direct assistance (30%), and agency referral (30%). Conclusions It was feasible for tertiary care center-based pediatric complex care programs to implement a standardized social needs assessment for CMC to identify and address parent-reported unmet social needs.

The impact of polysomnograms and family-centred decision making in children with medical complexity

2020 ◽  
Author(s):  
Natalie Jewitt ◽  
Julia Orkin ◽  
Eyal Cohen ◽  
Indra Narang ◽  
Suhail Al-Saleh ◽  
...  
Keyword(s):  
Decision Making ◽  
Sleep Apnea ◽  
Clinical Care ◽  
Central Sleep Apnea ◽  
Children With Medical Complexity ◽  
Sleep Related Breathing Disorders ◽  
Obstructive Sleep ◽  
Medical Complexity ◽  
Medical Histories ◽  
The Impact

Abstract Objectives To determine whether a change in clinical management (e.g., new tracheostomy or adenotonsillectomy) occurred following a polysomnogram (PSG) in children with medical complexity (CMC) and to explore whether families’ goals of care (regarding results and treatment implications) were discussed prior to the completion of a PSG. Methods All CMC enrolled in a complex care program at the Hospital for Sick Children, Canada, who underwent a baseline PSG from 2009 to 2015 were identified. Exclusion criteria included (1) PSGs for ventilation titration and (2) PSGs outside the study time frame. Health records were retrospectively reviewed to determine demographics, medical histories, families’ wishes, PSG results, and their impact on clinical care. Descriptive statistics were used to summarize results. Results Of 145 patients identified, 96 patients met inclusion criteria. Fifty (52%) were male. Median age was 3 years. Forty-eight (50%) were diagnosed with clinically significant (i.e., moderate to severe obstructive sleep apnea, central sleep apnea, and/or hypoventilation) sleep-related breathing disorders. Of those diagnosed, 9 (19%) had surgery, 25 (52%) underwent respiratory technology initiation, and 3 (6%) underwent both. In the remaining 11 (23%) patients, treatment was either considered too risky or did not align with the families’ wishes. Only 3 of 96 patients had clear documentation of their families’ wishes prior to PSG completion. Conclusion Recognizing the burden of medical tests for both the child and the health care system, a process of shared-decision making that includes clarifying a family’s wishes may be prudent prior to conducting a PSG.

scholarly journals Community first response and out-of-hospital cardiac arrest: a qualitative study of the views and experiences of international experts

BMJ Open ◽  
2021 ◽  
Vol 11 (3) ◽  
pp. e042307
Author(s):  
Eithne Heffernan ◽  
Jenny Mc Sharry ◽  
Andrew Murphy ◽  
Tomás Barry ◽  
Conor Deasy ◽  
...  
Keyword(s):  
Cardiac Arrest ◽  
Qualitative Study ◽  
Response Times ◽  
Well Being ◽  
Future Research ◽  
First Response ◽  
Beneficial Impact ◽  
Past Experiences ◽  
International Experts ◽  
The Impact

ObjectivesThis research aimed to examine the perspectives, experiences and practices of international experts in community first response: an intervention that entails the mobilisation of volunteers by the emergency medical services to respond to prehospital medical emergencies, particularly cardiac arrests, in their locality.DesignThis was a qualitative study in which semistructured interviews were conducted via teleconferencing. The data were analysed in accordance with an established thematic analysis procedure.SettingThere were participants from 11 countries: UK, USA, Canada, Australia, New Zealand, Singapore, Ireland, Norway, Sweden, Denmark and the Netherlands.ParticipantsSixteen individuals who held academic, clinical or managerial roles in the field of community first response were recruited. Maximum variation sampling targeted individuals who varied in terms of gender, occupation and country of employment. There were eight men and eight women. They included ambulance service chief executives, community first response programme managers and cardiac arrest registry managers.ResultsThe findings provided insights on motivating and supporting community first response volunteers, as well as the impact of this intervention. First, volunteers can be motivated by ‘bottom-up factors’, particularly their characteristics or past experiences, as well as ‘top-down factors’, including culture and legislation. Second, providing ongoing support, especially feedback and psychological services, is considered important for maintaining volunteer well-being and engagement. Third, community first response can have a beneficial impact that extends not only to patients but also to their family, their community and to the volunteers themselves.ConclusionsThe findings can inform the future development of community first response programmes, especially in terms of volunteer recruitment, training and support. The results also have implications for future research by highlighting that this intervention has important outcomes, beyond response times and patient survival, which should be measured, including the benefits for families, communities and volunteers.

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