scholarly journals The parental experience and perceptions of blenderized tube feeding for children with medical complexity

2021 ◽  
Author(s):  
Joanna Soscia ◽  
Sherri Adams ◽  
Eyal Cohen ◽  
Clara Moore ◽  
Jeremy N Friedman ◽  
...  
Keyword(s):  
Qualitative Study ◽  
Tertiary Care ◽  
Tube Feeding ◽  
Structured Interviews ◽  
Children With Medical Complexity ◽  
Entire Family ◽  
Parental Experience ◽  
Enteral Tube Feeding ◽  
Medical Complexity ◽  
Psychosocial Implications

Abstract Objectives Parents of children with medical complexity are often expected to implement complicated plans of care, such as enteral tube feeding, to support the health of their child. Enteral feeding can have psychosocial implications for the parent, child, and family. Blenderized tube feeding (BTF) refers to the administration of pureed food and drinks through a feeding tube. Little is known regarding parents’ experiences with BTF. Therefore, the purpose of this qualitative study was to understand the lived experience of BTF from the parent’s perspective. Methods This qualitative study was a grounded theory analysis utilizing semi-structured interviews of parents who provided at least 50% of their child’s diet through BTF. Participants were recruited using purposive sampling from the Complex Care Program at a tertiary care paediatric centre. Interviews were conducted until thematic saturation was achieved. Themes were identified using constant comparative analysis of transcribed interviews. Results Parents (n=10) felt that BTF positively affected the experience of tube feeding and enhanced their child’s health and wellbeing. Parents described BTF as a means of self-empowerment and a mechanism to normalize feeding and care for the entire family. Despite reporting BTF as more time consuming than formula feeding, all parents were satisfied with having made the change, and planned on continuing the diet. Conclusion BTFs can improve the experience of tube feeding and positively address some of the negative psychosocial implications of enteral tube feeding, providing a sense of normalcy and control for parents caring for a child with medical complexity.

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.

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.

Care without sufficient knowledge of people with home enteral tube feeding: a qualitative study

2021 ◽  
Vol 19 (10) ◽  
pp. 26-34
Author(s):  
Mehri Doosti-Irani ◽  
Farangis Heidari Goojani ◽  
Leila Rafiee Vardanjani ◽  
Kobra Noorian
Keyword(s):  
Qualitative Study ◽  
Family Caregivers ◽  
Health Professionals ◽  
Tube Feeding ◽  
Interview Data ◽  
Negative Consequences ◽  
Correct Position ◽  
Face To Face ◽  
Enteral Tube Feeding ◽  
The Family

Aim: This study aimed to explore family caregivers' experiences with tube feeding at home in Iran. Methods: This qualitative study was conducted with purposefully selected family caregivers who participated in an in-depth, semi-structured, face-to-face interview. Data analysis was performed through content analysis and rigor was investigated. Results: In total, 20 caregivers were interviewed. Two main categories were found in the interview data: ‘abandoned training’ and ‘lack of knowledge of nutrition’. Participants felt abandoned and unsupported by health professionals. Participants also reported feeling that health professionals passed the training responsibility to other health professionals who did not give training. This resulted in participants feeling obligated to learn from their peers. Participants lacked knowledge about nutrition, as well as how to prepare home-made formula for feeding, the correct position for feeding and feeding times. Conclusion: Despite having a heavy and vital responsibility, participants felt that they had not been adequately trained and thus faced making errors, resulting in negative consequences for the patient and the family. Therefore, appropriate plans must be made to promote preparation for home care.

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 Understanding families’ experiences following a diagnosis of non-syndromic craniosynostosis: a qualitative study

BMJ Open ◽  
2020 ◽  
Vol 10 (9) ◽  
pp. e033403
Author(s):  
Victoria Kuta ◽  
Lauren Curry ◽  
Daniel McNeely ◽  
Simon Walling ◽  
Jill Chorney ◽  
...  
Keyword(s):  
Qualitative Study ◽  
Health Centre ◽  
Tertiary Care ◽  
Secondary Outcome ◽  
Corrective Surgery ◽  
Eligibility Criteria ◽  
Parental Experience ◽  
Syndromic Craniosynostosis ◽  
Diagnostic Delays ◽  
The Impact

ObjectivesCraniosynostosis is typically diagnosed and surgically corrected within the first year of life. The diagnosis and surgical correction of the condition can be a very stressful experience for families. Despite this, there is little research exploring the impact that craniosynostosis has on families, especially in the period immediately following diagnosis and correction. In this study, the authors aimed to qualitatively examine the psychosocial experience of families with a child diagnosed with craniosynostosis.DesignQualitative study.SettingTertiary care paediatric health centre.ParticipantsMothers of children newly diagnosed with single-suture, non-syndromic craniosynostosis.InterventionSemistructured interviews regarding parental experience with the initial diagnosis, their decision on corrective surgery for their child, the operative experience, the impact of craniosynostosis on the family and the challenges they encountered throughout their journey.Primary and secondary outcome measuresThematic analysis, a type of qualitative analysis that provides an in-depth account of participant’s experiences, was used to analyse the interview data.ResultsOver a 4-year period, 12 families meeting eligibility criteria completed the study. Three main themes (six subthemes) emerged from the preoperative interviews: frustration with diagnostic delays (parental intuition and advocacy, hope for improved awareness), understanding what to expect (healthcare supports, interest in connecting with other families) and justifying the need for corrective surgery (influence of the surgeon, struggle with cosmetic indications). Two main themes (four subthemes) were drawn from the postoperative interviews: overcoming fear (the role of healthcare professionals, transition home) and relief (reduction in parental anxiety, cosmetic improvements).ConclusionsOverall, the diagnosis of craniosynostosis has a profound impact on families, leading them to face many struggles throughout their journey. A better understanding of these experiences will help to inform future practice, with a hope to improve this experience for other families moving forward.

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.

Physicians’ empathy levels in a primary care setting: perceptions of patients and their physicians, a qualitative study

2020 ◽  
Vol 37 (6) ◽  
pp. 834-838
Author(s):  
Khairat Al-Habbal ◽  
Thalia Arawi
Keyword(s):  
Qualitative Study ◽  
Subjective Experience ◽  
Middle Eastern ◽  
Tertiary Care ◽  
Chief Complaint ◽  
Patient Relationship ◽  
Structured Interviews ◽  
Physician Patient Relationship ◽  
Tertiary Care Centre ◽  
Physician Patient

Abstract Background The physician–patient relationship is a crucial element in successful medical care. Empathy is the ability to understand an individual’s subjective experience yet remain as an observer. It plays a major role in establishing a good physician–patient relationship. Objective The aim of this study was to evaluate the perspectives of patients and their corresponding emergency physicians regarding physicians’ empathy levels and to extract themes that both patients and their doctors considered as important for an empathic encounter. Methods This is a qualitative study conducted at a Middle Eastern tertiary care centre Emergency Department (ED) using in-depth semi-structured interviews administered to each participating patient and his/her corresponding ED physician. Empathy-related themes were identified using inductive thematic analysis. Results This study shows that both patients and physicians believe in the importance of empathy in the ED based on four major themes: emotions, interpersonal skills, time and chief complaint. Time and the chief complaint were perceived as barriers by physicians, but not by their patients. Conclusions A gap lies in the expressive communication phase of empathy between the two groups. The four major themes retrieved could form the basis of an empathy measure in the medical encounter in Lebanese and similar settings.

Patients’ experiences of home enteral tube feeding (HETF) – a qualitative study

2015 ◽  
Vol 20 (7) ◽  
pp. 552-565 ◽  
Author(s):  
Kaisa Bjuresäter ◽  
Maria Larsson ◽  
Elsy Athlin
Keyword(s):  
Qualitative Study ◽  
Tube Feeding ◽  
Enteral Tube Feeding

22 Housing Need Amongst Children with Medical Complexity: A Cross-Sectional Descriptive Study of Three Populations

2021 ◽  
Vol 26 (Supplement_1) ◽  
pp. e14-e16
Author(s):  
Kayla Esser ◽  
Clara Moore ◽  
Kara Grace Hounsell ◽  
Adrienne Davis ◽  
Alia Sunderji ◽  
...  
Keyword(s):  
Health Care Providers ◽  
Financial Burden ◽  
Tertiary Care ◽  
Descriptive Study ◽  
Sociodemographic Factors ◽  
Healthy Children ◽  
Care Providers ◽  
Children With Medical Complexity ◽  
Cross Sectional ◽  
Medical Complexity

Abstract Primary Subject area Complex Care Background Children with medical complexity (CMC) have medical fragility, complex chronic disease necessitating specialized care, functional disability, and/or high technology dependence. Housing is an important social determinant of health, yet research on prevalence and types of housing need in CMC is limited. Housing need encompasses unstable (frequent moves), inaccessible (lack of ramps/lifts), inadequate (major repairs needed), unsuitable (not enough bedrooms), or unaffordable housing. Given the association between housing and health, housing need may be an important consideration when caring for CMC. Objectives The primary objective was to describe the prevalence of and factors related to housing need in CMC. The secondary objective was to compare housing need between CMC, children with one chronic condition (Type 1 diabetes; CT1D) and healthy children (HC) to understand the relationship between chronic conditions and housing need. Design/Methods This was a cross-sectional descriptive study. Housing affordability, adequacy, suitability, stability, and accessibility were evaluated through surveys administered to caregivers of CMC, CT1D, and HC at a tertiary-care paediatric hospital using convenience sampling. The association of binary outcomes of housing need between groups was analyzed using logistic regression models, adjusting for sociodemographic factors (income, education, employment, geography, immigration status). Results 453 caregivers participated (Table 1). Compared to caregivers of HC, caregivers of CMC had higher odds of reporting one or more moves in the last two years (1.3 times), having safety concerns (3 times), using a common area as a bedroom (5.2 times), and experiencing housing stress (3.2 times), after sociodemographic factors were adjusted for (Table 2). Families of CT1D also had elevated odds of some indicators of housing need compared to HC, although to a lesser extent than CMC. 62.2% of CMC indicated they had to reduce spending on basics in order to afford their rent/mortgage, compared to 35.9% of CT1D and 25.2% of HC. Nearly two-thirds of CMC (60.2%) reported a need for accessibility accommodations in their home. Of those who installed accommodations, 62.9% felt the installations were a financial burden (cost ranged from $800-$80,000). Conclusion Families of CMC had higher odds of reporting unstable, inadequate, unsuitable, and stressful housing compared to HC even after sociodemographic factors were accounted for, suggesting an association between complexity of child health conditions and housing need. Access to appropriate housing may improve the health of CMC. Health care providers can screen for housing need, become familiar with housing interventions, and advocate for improved resources to address housing need in CMC.

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