Semi-structured Interviews Of Parents Research Articles

Open Notes Experiences of Parents in the Pediatric ICU.

We examined how parents experience and navigate open access to clinical notes ("open notes") in their child's electronic health record and explored their interactions with clinicians during an ICU admission. We performed a qualitative analysis using semistructured interviews of English-speaking parents who accessed their child's clinical notes during a pediatric ICU (general or cardiac) admission. We included patient-parent dyads with an ICU admission ≥48 hours between April 2021 and December 2022, note access by proxy timestamp during the ICU course, and either patient age <12 years or incapacitated adolescent ages 12 to 21 years. Purposive sampling was based on sociodemographic and clinical characteristics. Phone interviews were audio-recorded, transcribed, and analyzed using inductive thematic codebook analysis. We interviewed 20 parents and identified 2 thematic categories, outcomes and interactions, in parents accessing clinical notes. Themes of outcomes included applied benefits, psychosocial and emotional value, and negative consequences. Themes of interactions included practical limitations and parental approach and appraisal. The ICU context and power dynamics were a meta-theme, influencing multiple themes. All parents reported positive qualities of note access despite negative consequences related to content, language, burdens, and lack of support. Parents suggested practice and design improvements surrounding open note access. Parental experiences with open notes reveal new, unaddressed considerations for documentation access, practices, and purpose. Parents leverage open notes by negotiating between the power dynamics in the ICU and the uncertain boundaries of their role and authority in the electronic health record.

"Black Is Not Monolithic": Complexities in COVID-19 Vaccine Decision-Making.

Longstanding inequities in the USA have resulted in the disproportionate impact of COVID-19 on Black Americans. Coupled with medical mistrust, COVID-19 vaccine uptake is lower in Black populations. We sought to understand the perspectives of Black parents on the COVID-19 pandemic, COVID-19 vaccination for themselves and their children, and trust with the medical community. Using qualitative methodology, we conducted in-depth semi-structured in-person interviews of Black parents of children admitted to the inpatient pediatric units in our tertiary academic medical center in Connecticut from July to November 2021. We used the grounded theory approach, and the constant comparative method until saturation was reached. We interviewed 20 parents who identified as Black; 50% were vaccinated against COVID-19. The following 5 themes and sub-themes emerged: (1) mixed feelings influenced COVID-19 vaccine decision-making ranging from much needed relief and feelings of uncertainty, distrust, and fear; (2) COVID-19 vaccine uptake was influenced by individual and family's health concerns and job or school mandates; (3) deferring the COVID-19 vaccine was influenced by the perception of risk and concerns about vaccine integrity; (4) institutional mistrust within the Black community bred by systemic racism influenced vaccine decision-making; and (5) conflicted feelings about the COVID-19 vaccine for their child. Our findings reiterate the complexities around vaccine decision-making and underscore the importance of recognizing the pervasive influence of institutional mistrust when counseling Black families about the COVID-19 vaccine.

A pilot, single-arm feasibility study of an integrated cognitive-behavioral treatment for anxiety in young autistic children.

Anxiety is prevalent in young autistic children under 7 years of age. Yet there is a paucity of empirically based interventions for this age group. DINO Strategies for Anxiety and Uncertainty Reduction (DINOSAUR) is an innovative cognitive behavioral intervention that seeks to optimize treatment response in young autistic children by targeting anxiety and the contributing mechanisms of intolerance of uncertainty and parental accommodation using a telehealth delivery model. This pilot, single-arm study examines the preliminary feasibility of DINOSAUR. Fourteen autistic children ages 4-6 years with average language and cognitive skills and their parents received the intervention. Quantitative and qualitative data pertaining to parent satisfaction and treatment outcomes were collected. Attendance, retention, and parent satisfaction ratings offer preliminary support for the feasibility of the treatment model. Change in clinical severity ratings on a semi-structured parent interview of anxiety and parents' qualitative report suggests the potential to benefit young autistic children. Results support future study of the DINOSAUR model in a larger, randomized controlled trial.

An analysis of the lived experiences of parents and care providers involved in care navigation for children with complex needs using an intersectionality health equity lens.

Background: The experiences of parents and care providers offer valuable insight into the inequities that exist in navigating care for children with complex needs (CCN). Care services for this vulnerable population are provided within fragmented health, social services, and education systems. Navigating care remains predominantly women’s work with both parents and care providers facing significant barriers accessing care for CCN.&#x0D; Who is it for? CCN and their families use a high volume of resources across multiple sectors requiring a coordinated effort by parents (often mothers) and care providers (often women) involved in their care.&#x0D; Who did you involve? This paper provides new insight into the work related to care navigation for CCN by applying an intersectionality health equity lens to a secondary analysis of data collected from semi-structured interviews of parents (n=33) and care providers (n=83) involved in care for CCN in two Maritime Canadian provinces.&#x0D; What did you do? In this secondary analysis, data grouped into ten dominant themes related to care navigation were viewed through an intersectionality health equity lens to identify tensions arising from intersecting relations of inequality with a focus on the implications of sex/gender, geography, and income-level in shaping the lived experiences of parents and care providers navigating care for CCN.&#x0D; What results did you get? This study found that care for CCN continues to be provided in a context of siloed health, social services, and education sectors perpetuating the difficulties experienced by parents and care providers needing to identify and access care services available to CCN within and beyond their community. Parents of CCN initially planned to share caregiving responsibilities equally, but only mothers reported leaving their jobs or not pursuing their careers to care for their CCN. Mothers researched available services, organized care appointments, arranged logistics (e.g. transportation, paperwork, care for other children), and advocated for their child. However, not all parents were equally able to navigate care for CCN due to differences in literacy rates, financial or geographic barriers, and care burdens, contributing to perceived inequities in access to care for CCN. Care providers reported trying to support parents in navigating care for CCN but these professionals experienced a lack of dedicated time, navigation training, and adequate remuneration during their efforts to provide the necessary assistance.&#x0D; &#x0D; What is the learning for the international audience? A dedicated role for paid patient navigators could help ensure meaningful access to care for CCN and their parents but this alone is not sufficient. &#x0D; What are the next steps? In addition to supporting the women involved in care navigation work for CCN, it is essential to address interconnected systemic issues related to a lack of health human resources, unequal access to care in rural areas, and financial barriers to accessing care that falls outside of the publicly insured care mandated in national legislation.

Bereaved parents’ perspectives on financial toxicity at end-of-life for children with cancer.

287 Background: Families of children with cancer often experience financial toxicity. However, little is known about families’ experiences with financial toxicity at end-of-life (EOL). Therefore, we qualitatively explored bereaved families’ experiences related to financial toxicity. Methods: We performed a secondary analysis of semi-structured interviews of bereaved parents about their perspectives on high-quality EOL care. The interviews were conducted with bereaved parents in California and Alabama whose child (0-21 years at the time of death) died of cancer ≥6 months before the interview. Quotes related to financial experiences were identified and then grouped thematically. Results: Fifty-five parents, representing forty-eight children were interviewed. Twenty-eight parents (51%) were recruited in California and twenty-seven (49%) in Alabama. The majority of participants were non-Hispanic White (29; 52%), fourteen (25%) were Hispanic, and twelve (22%) were Black. The most common cancer diagnoses were non-central nervous system solid tumors (18, 38%). Children died at a mean age of 11 years (SD=6 years) and a median of 4 years (IQR=2-8 years) prior to the interview. Almost all families (52, 95%) discussed themes related to financial toxicity. Parents identified transportation, housing, other basic needs, funeral costs, and medical costs as contributors to financial toxicity at EOL. Barriers to financial wellness included battling insurance companies, insufficient financial support from the hospital, and the cumulative financial toxicity of treatment. Many parents discussed how the hospital and community served as facilitators of financial wellness by connecting them with resources and providing financial support. In some cases, finances prevented families from accessing services such as hospice care mental health support; financial constraints also affected EOL decisions. Conclusions: Almost all families discussed themes related to financial toxicity, despite not being specifically asked about financial toxicity. In particular, families were financially impacted by basic needs, medical bills, and funeral costs at the end of their child’s life. They identified numerous community and hospital-based barriers and facilitators of financial wellness. It is critical that pediatric oncology programs routinely screen for financial hardship at EOL (and into bereavement). Further research is also needed on how best to support these families’ financial struggles at this challenging time.

Reciprocal relations between interparental aggression and symptoms of oppositional defiant and conduct disorders: a seven-wave cohort study of within-family effects from preschool to adolescence.

Interparental aggression is believed to increase the risk of behavioral disorders in offspring, and offspring behavioral problems may forecast interparental aggression. However, these assumptions have yet to be put to a strong test. This study, therefore, examined whether increased interparental aggression predicted increased symptoms of oppositional defiant disorder (ODD) and conduct disorder (CD) from preschool to adolescence and vice versa. A sample (n = 1,077; 49.6% girls) from two birth cohorts of children in Trondheim, Norway, was assessed biennially from age 4 to 16. Children's symptoms of ODD and CD were assessed using semi-structured clinical interviews of parents (from age 4) and children (from age 8). One of the parents reported on their own and their partner's verbal and physical aggression. A random intercept cross-lagged model was estimated to test the within-family relations between interparental aggression, CD, and ODD symptoms. Across development, increased interparental aggression predicted increased CD symptoms 2 years later, whereas an increased number of ODD symptoms forecasted increased interparental aggression. The argumentative/defiant, aggressive, and vindictive behaviors seen in ODD are often directed toward parents and may take a toll on their relationship and possibly foster interparental aggression, whereas aggression between parents may promote symptoms of CD in their offspring, which commonly extend beyond the home. Incorporating effective and non-aggressive means to solve interparental conflict into parental management programs may reduce the development of symptoms of CDs in children.

Parents’ Perspectives on Secondary Genetic Ancestry Findings in Pediatric Genomic Medicine

With advances in genome sequencing technologies, large-scale genome-wide sequencing has advanced our understanding of disease risk and etiology and contributes to the rapidly expanding genomic health services in pediatric settings. Because it is possible to return ancestry estimates following clinical genomic sequencing, it is important to understand the interest in ancestry results among families who may have the option of receiving these results. We conducted 26 semi-structured qualitative telephone interviews of parents with children/newborns with likely genetic conditions from two studies of clinical genome sequencing. Using a purposive sampling approach, we selected parents from the SouthSeq cohort, Clinical Sequencing Evidence-Generating Research (CSER Phase 2) project active in Alabama, Mississippi, and Louisiana, or an earlier Clinical Sequencing Exploratory Research (CSER Phase 1) initiative based in the same region. Our interviews focused on parental knowledge about, attitudes on, interest in, and preferences for receiving genetic ancestry results following clinical genome sequencing in the neonatal intensive care unit or in pediatric clinics. Overall, parents prioritized clinical results or results that would help guide the diagnosis and treatment of their child, but they were also interested in any genetic result, including genetic ancestry, that potentially could enhance the meaning of information on disease risk, prevention and screening guidance, or family planning. While parents thought that ancestry results would help them learn about themselves and their heritage, the had concerns over the privacy, security, and accuracy of genetic ancestry information, although parents indicated that they had greater trust in ancestry findings provided as part of clinical care compared with those offered commercially. Parents also wanted ancestry results to be returned in a timely manner by knowledgeable staff, with kid-friendly materials and online tools available to aid, as needed, in the understanding of their results. Taken together, our results highlight that despite being in high-stress situations, such as having a newborn in the neonatal intensive care unit, parents were interested in receiving genetic ancestry results along with their clinically relevant findings.

Describing early years sport: take-up, pathways, and engagement patterns amongst preschoolers in a major Canadian city

Despite high rates of early childhood (<6 years) sport participation, limited research captures children’s experiences or parents’ motives for children’s engagement during this time. This study aimed to identify the sport take-up, pathways, and patterns of engagement among 3-5 year-old children participating in organized sport programming in a major Canadian city. Data were gathered through external observations of five programs (i.e. multi-sport, soccer, hockey, gymnastics, rugby), and 10 semi-structured parent interviews (Mage= 36.4; six female). Results provide novel insight into preschool-aged children’s sport and unstructured sport/physical activity habits, while highlighting common program elements (i.e. fundamental movement skills, sport-specific skills, deliberate play, free play, competition). Findings suggest that many existing life-span sport participation and development models do not align with delivery of or experiences within preschooler programs; continued research is warranted to determine what pathways, engagement patterns, and program activities are optimal for preschooler development, in turn, contributing to modified models.

Reflect, Reframe, and Re-Imagine Theory and Practice in Speech, Language, and Hearing Sciences: Introduction to the Forum.

Reflect, Reframe, and Re-Imagine Theory and Practice in Speech, Language, and Hearing Sciences: Introduction to the Forum.

Exploring social stages of play through eye to I© intervention model.

The study explores the role of the Eye to I© intervention model in facilitating advancement through social stages of play in which skills contribute to the quality of social interaction and communication in children with autism. Data were collected on 11 participants, ages of 2-6years, formally diagnosed with autism, receiving Eye to I© Social Communication therapy at Potentials Therapy Center, New Delhi, India. Eye to I© is developed in-house at Potentials and is further discussed in the paper. All participants attended a form of group intervention. A mixed-method design included quantitative measures administered pre and post intervention (Communication DEALL Developmental Checklist, Communication Matrix) and video coding of Social Communication sessions. Qualitative measures were semi-structured parent interviews conducted at the end of intervention. Thematic analysis and quantitative statistical analysis results show that by the end of the Eye to I© intervention period children engaged in social stages of play of greater developmental complexity and showed increased scores in assessments of social skills as well as generalization of skills. This suggests that skill acquisition necessary to directly support two diagnostic criteria areas of autism as per DSM-V; i.e., communication and social interaction occurred during the period of intervention.

The Impact of a Virtual Environment for Intergenerational Learning

Few intergenerational programs have focused on virtual learning. This paper explores the impact that a virtual intergenerational learning program had on primary school students and older adults at a residential aged care home. This study reports on the findings from a single case study design involving interactions across two sites, consisting of primary school students (n = 41), teachers (n = 2), a principal (n = 1), plus elders (n = 9) and staff (n = 4) from an aged care home. Questionnaires were completed by all participants, except for the school principal. Observations of the program interactions were captured via video ethnography. Data were also evaluated from semi-structured interviews of students (n = 16), parents (n = 2), teachers (n = 2), a principal (n = 1), elders (n = 9) and staff (n = 5) from the aged care home. The findings reveal that intergenerational programs must pay close consideration to the planned activities, participant characteristics, learning environment, equipment, and facilitator interactions and skills, particularly in a virtual space. In addition, this study finds continued evidence for the success of virtual intergenerational practice programs to reduce social isolation and exclusion, especially when we practice social distancing.

“Someone in Their Corner”: Parental Support in Online Secondary Education

Despite increased interest in K–12 online education, student engagement deficits and the resulting student attrition remain widespread issues. The Academic Communities of Engagement (ACE) framework theorizes that two groups support online student engagement: the personal community of support and the course community of support. However, more evidence is needed to understand how members of these communities, especially parents, support students in various contexts. Using insights gleaned from 14 semi-structured interviews of parents with students enrolled in online secondary school, this study adds support to the roles identified in the ACE framework by presenting real examples of parents supporting their online students’ affective, behavioral, and cognitive engagement. Findings also confirm patterns found in previous research that are not explained using the ACE framework, such as parental advocacy, communication with teachers, and self-teaching. We discuss how a systems approach to conceptualizing the ACE communities allows the framework to more accurately capture parents' perceived experiences within the personal community of support. We also discuss implications for both practitioners and members of students’ support structures.

The mental load in separated families

Objective: This paper asks how evolving contact and gendered working lives, gendered identities, and conflict and parental relationships influence cognitive labour in separated families.&#x0D; Background: The fact that the often-invisible work of planning, researching, and executing decisions concerning children and household maintenance is borne by women/mothers, receives growing research attention, yet, the bulk of this research focuses on the gendered division of the mental load in intact families. Given the high prevalence of separated families with high levels of father contact, more work is needed to understand how cognitive labour is divided by parents residing in separate households.&#x0D; Method: This paper draws on 31 semi-structured interviews of separated parents, including 7 former couples. Interviews were sampled from a nationally representative longitudinal survey, Understanding Society, professionally transcribed and thematically analysed with Nvivo.&#x0D; Results: Analysing the interviews reveals both continuity and change in the division of the mental load following separation. For some families, gendered identities and working lives continue to justify an unequal division of the mental load, even when children spend large amounts of time solely with fathers. In others, conflict can reduce communication between parents, either increasing fathers cognitive labour through parallel parenting or decreasing it when fathers are excluded from decision-making altogether. Finally, separation can present a turning point where working lives and identities are re-evaluated, and the mental load can be negotiated anew.&#x0D; Conclusion: We provide new evidence that the mental load remains gendered even among those practicing a relatively "modern" family form of shared care post-separation, while highlighting possibilities for variation and change.

Reasons and suggestions for improving low immunization uptake among children living in low socioeconomic status communities in Northern Alberta, Canada – A qualitative study

ObjectiveUnder-immunization increases the risk of acquiring vaccine-preventable diseases in children and the community. The targeted coverage rate for routine childhood immunization in Alberta, especially in disadvantaged communities in rural and remote geographic areas, has not been achieved for many years. This study was conducted to identify reasons for under-immunization in children in low socioeconomic status (SES) communities and propose suggestions to address issues/concerns identified by low SES parents for improving immunization coverage in their communities. MethodsFourteen semi-structured phone interviews of low SES parents with under-immunized children living in rural and remote geographic areas in Northern Alberta were conducted. Transcripts were analyzed to identify relevant themes. ResultsBusy lifestyles of many parents prevented them from taking their children to clinics for immunization, which were exacerbated by long distances to clinics, transportation issues, operating hours of clinics, and lack of reminders. Many disadvantaged parents also exhibited varying levels of vaccine hesitancy due to safety concerns, especially about newer vaccines, thereby causing some parents to delay immunizing their child intentionally. ConclusionImplementing procedures to alleviate access issues, such as offering extended operating hours, opening drop-in clinics/satellite clinics in distant areas, nurse visits to their homes, updating contact information of parents, frequent reminder options and addressing safety and effectiveness concerns about vaccines in plain language using evidence-based communication strategies can promote timely immunization among children of low SES parents.

The Journey: Parental Expectations and Perceptions of Therapy Services for Children With Down Syndrome.

The researchers sought to identify and describe parents' expectations and perceptions of therapy services received by their children with Down syndrome. This study used a qualitative descriptive approach conducted in 2 phases: individual semi-structured parent interviews followed by focus groups. Analysis of interview transcripts served as the basis for development of codes, categories, and themes describing parents' beliefs, values, and opinions of their children's therapy. Within the metaphor of The Journey, 3 major themes emerged: Where are we going? Who's driving the car? What I really need for this trip. Parents value the principles of family-centered care and want a partnership with therapists in caring for their children. Therapists can help parents of children with Down syndrome navigate their children's therapy services by establishing a relationship of trust and by communicating with respect, understanding, and compassion.

Cognitive, emotional, and social functioning of preschoolers with attention deficit hyperactivity problems

BackgroundAttention Deficit Hyperactivity Disorder (ADHD) is associated with deficits in different functional domains. It remains unclear if deficits in different domains are equally strong in early childhood, and which deficits are specific to ADHD. Here, we describe functional domains in preschoolers and assess deficits in children with ADHD problems, by comparing them to preschoolers with other mental health problems or who develop typically.MethodsThe ADHD Study assessed 1195 ca. 3.5 years old preschoolers through a semi-structured parent interview, parent questionnaires, and with neuropsychological tests. We determined functional domains by applying factor analytic methods to a broad set of questionnaire- and test-scales. Using resulting factor scores, we employed a Bayesian hierarchical regression to estimate functional deficits in children with ADHD.ResultsWe found that preschoolers’ functioning could be described along the seven relatively independent dimensions activity level and regulation, executive function, cognition, language, emotion regulation, introversion, and sociability. Compared to typically developing preschoolers, those with ADHD had deficits in all domains except introversion and sociability. Only deficits in activity level regulation and executive functions were larger than 0.5 standardised mean deviations and larger than deficits of children with other mental health problems.ConclusionsPreschoolers with ADHD have deficits in multiple functional domains, but only impairments in activity level and regulation and executive functions are specific for ADHD and large enough to be clinically significant. Research on functioning in these domains will be important for understanding the development of ADHD, and for improving treatment and prevention approaches.

Supporting the mental health of children with speech, language and communication needs: The views and experiences of parents

Background and aimsA high rate of children in mental health services have poor language skills, but little evidence exists on how mental health support is delivered to and received by children with language needs. This study looked at parental experiences, asking parents of children with speech, language and communication needs (SLCN) about their experiences seeking help for their children's mental health. We were particularly interested on the experiences of parents of children with Developmental Language Disorder (DLD), a specific SLCN that remains relatively unknown to the general public.MethodsWe conducted an online survey of 74 parents of children with speech, language and communication needs (SLCN). Survey respondents included parents of children with a range of difficulties, including DLD, autism, verbal dyspraxia, global intellectual delay, a history of hearing problems, and SLCN without a primary diagnosis. Survey respondents were asked what sources of support they had accessed for their child's mental health and to provide comments on what was good and what was not good about this support. We then conducted 9 semi-structured interviews of parents of children with DLD about their experiences. These were parents of children with DLD aged 7 to 17 years, from across a range of educational settings, and with a range of present mental health concerns.ResultsContent analyses of the survey responses from parents of children with SLCN highlighted three broad factors of importance to parents’ experiences: relational aspects of care, organisational aspects of care, and professionals’ knowledge. Thematic analyses of the interviews of parents of children with DLD identified 5 themes: the effects of language problems on the presentation of distress; the role of the school environment; the role of key professionals; standard approaches to mental health support might not be appropriate; and the role and impact on parents. Parents expressed concerns that their children's mental health problems and need for support would not be recognised, and felt interventions were not accessible, or delivered in a manner that was not comfortable for their children due to high reliance on oral language skills. Some parents were left feeling that there was no provision suitable for their children.ConclusionsParents of children with SLCN face barriers accessing support for their children's mental health, including a lack of professional knowledge about their children's language needs. Parents argued that language and communication needs can significantly affect the delivery and success of psychological therapies and interventions. Systematic research is needed to understand how to successfully adapt services to make them accessible to children and young people with language needs, and to ensure that mental health problems are detected in children with language difficulties. Increased knowledge about language disorders such as DLD, and access to speech and language therapy expertise, is needed amongst professionals who work to support children's mental health.

Preschool sleep and depression interact to predict gray matter volume trajectories across late childhood to adolescence

There is a close relationship between sleep and depression, and certain maladaptive outcomes of sleep problems may only be apparent in individuals with heightened levels of depression. In a sample enriched for preschool depression, we examined how sleep and depression in early childhood interact to predict later trajectories of gray matter volume. Participants (N = 161) were recruited and assessed during preschool (ages 3–6 years) and were later assessed with five waves of structural brain imaging, spanning from late childhood to adolescence. Sleep and depression were assessed using a semi-structured parent interview when the children were preschool-aged, and total gray matter volume was calculated at each scan wave. Although sleep disturbances alone did not predict gray matter volume/trajectories, preschool sleep and depression symptoms interacted to predict later total gray matter volume and the trajectory of decline in total gray matter volume. Sleep disturbances in the form of longer sleep onset latencies, increased irregularity in the child’s sleep schedule, and higher levels of daytime sleepiness in early childhood were all found to interact with early childhood depression severity to predict later trajectories of cortical gray matter volume. Findings provide evidence of the interactive effects of preschool sleep and depression symptoms on later neurodevelopment.

Parent perspectives on facilitating decision-making around pediatric home ventilation.

Deciding about pediatric home ventilation is exceptionally challenging for parents. Understanding the decision-making needs of parents who made different choices for their children could inform clinician counseling that better supports parents' diverse values and goals. To determine how clinicians can meet the decisional needs of parents considering home ventilation using a balanced sample of families who chose for or against intervention. We conducted semi-structured interviews of parents who chose for or against home ventilation for their child within the previous 5 years. Parents were recruited from three academic centers across the United States. Interviews focused on parent-clinician communication during decision-making and how clinicians made the process easier or more difficult. Qualitative analysis was used to generate themes and identify key results. Thirty-eight parents were interviewed; 20 chose for and 18 chose against home ventilation. Five themes described their perspectives on how clinicians can facilitate high-quality decision-making: demonstrating dedication to families, effectively managing the medical team, introducing the concept of home ventilation with intention, facilitating meaningful conversation about the treatment options, and supporting and respecting the family's decision. High-quality decision-making around home ventilation depends on individual clinician actions and the complex operations of large academic settings. Strong working relationships with parents, collaborative alliances with colleagues, and appropriate delivery of key content can help meet the needs of parents considering invasive breathing supports for their children.

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

ObjectivesParents 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.MethodsThis 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.ResultsParents (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.ConclusionBTFs 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.