Screening••

Understanding experiences and perspectives in addressing unmet social needs of children and families in a paediatric weight management program: a qualitative descriptive study

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Abstract

Objective The objective is to describe the experiences and perceptions of caregivers who participated in a community systems navigator intervention that addressed unmet social needs.

Design, setting and patients A qualitative descriptive study with caregivers of children enrolled in a clinical trial addressing unmet social needs of families with children cared for in a tertiary pediatric weight management clinic, through community systems navigation. Participants were asked open-ended questions related to perceptions of social needs screening in clinical settings. Interviews were recorded and analysed using Braun and Clarke’s six-phase approach to thematic analysis.

Results Ten parent participants were interviewed. Social needs screening perception and acceptability varied between participants. Social needs screening was comfortable for most but stressful for others. Participants noted that trusting relationships promote comfort with sharing social needs information, and this data should be shared on the electronic health record if accurate and purposeful. They found the online screening tool convenient but thought it could also limit opportunities to elaborate. Some participants noted the intervention of community systems navigation helpful; however, others described the need for more tailored resources.

Conclusions Screening for unmet social needs in clinical settings is complex and should be family centred, including the consideration of the mode of screening, data sharing in the electronic health record and ensuing interventions. Perspectives of families should drive the design of future larger scale community navigation interventions to address unmet social needs in clinical settings.

What is already known on this topic

Social risks, including low income, lack of housing and food insecurity, have a negative impact on health outcomes.
It is important to address unmet social needs in paediatric clinical encounters.
However, there are few reports of caregiver perceptions regarding social needs screening and interventions.

What this study adds

This study explores the experiences and perceptions of caregivers enrolled in an unmet social needs intervention.
We found that social needs screening perception and acceptability are variable and complex, which may relate to participants’ personal circumstances and lived experiences.

How this study might affect research, practice or policy

This study’s findings are important for clinicians and researchers interested in addressing unmet social needs in paediatric clinical settings in a family-centred manner.
Our results will help drive the design of future social needs interventions.

Introduction

Socioeconomic factors including unmet social needs, such as low income, lack of housing and food insecurity, have a negative upstream impact on the health of children with chronic health conditions and their families.1–3 For example, children and families experiencing unmet social needs are at higher risk of infant mortality, asthma, obesity, injuries and mental health problems.3 The experience of poverty during childhood and inferior health outcomes have a life course impact that track into adulthood.3

In a 2016 policy statement, the American Academy of Pediatrics highlighted the importance of addressing unmet social needs in paediatric clinical encounters, including early identification of social risks and connection to community supports.4 However, these interventions within clinical settings for unmet social needs have had limited evaluation in the setting of children with chronic health conditions. A systematic review in 2017 by Gottlieb et al that included interventions addressing unmet social needs in paediatric clinical settings suggested a paucity of research that measures its impact on health outcomes and called for more high-quality evidence.5 Furthermore, there were no studies in the systematic review that were conducted in Canada, nor did they include children with chronic or complex medical conditions.5

To begin to address these gaps, we conducted a pilot randomised controlled trial (RCT) to address unmet social needs among children with obesity and their families within a outpatient weight management programme.6 The primary objective of this pilot RCT was to determine the feasibility of implementation and delivery of a community navigator intervention versus self-navigation to address unmet social needs of children with obesity enrolled in a paediatric weight management programme at a tertiary children’s hospital.6 Prior qualitative studies have identified that parents/caregivers note that social needs screening is important, but that it needs to be approached with sensitivity and in a patient-centred manner.7–9 As such, within the context of our pilot RCT, we sought to understand the experiences of parents/caregivers enrolled in this trial.

Methods

Study design and setting

This was a qualitative descriptive study using thematic analysis to understand caregivers’ experiences with a community navigation intervention to screen and address unmet social needs within a tertiary care paediatric weight management clinic in Ontario, Canada. Qualitative description generates rich data regarding an individual’s perspective and experiences with a flexible research process following an inductive approach.10 11

Participants

This study included caregivers and/or parents, recruited from a pilot RCT, which sought to screen and address the unmet social needs of children and families enrolled in a paediatric weight management programme.6 The details of this RCT are previously described.6 Caregivers who completed the final study follow-up were asked to participate in the qualitative interviews using convenience sampling.

Data collection

A research assistant (SD, a doctoral student with experience in qualitative interviewing) conducted semistructured interviews with each participant on a secured online meeting platform that was compliant with local privacy legislation. Participants had no contact with the interviewer prior to the study. Each participant was asked a series of five open-ended questions that were developed based on the interview guidelines from Quinn-Patton.12 Questions fell under the following five categories: (1) perceptions of social needs screening in clinical setting, (2) acceptability of online tool to screen, (3) perception of navigation intervention, (4) preference for including social needs screening into clinical record and (5) the impact of the COVID-19 pandemic on unmet social needs.

Data analysis

Interviews were recorded and then transcribed verbatim. Thematic analysis followed the six-phase approach outlined by Braun and Clarke,13 which included: (1) becoming familiar with the data, (2) generating initial codes for the data, (3) searching for themes, (4) reviewing potential themes, (5) defining and naming themes and (5) producing the report. Salience and patterns in the interviews were analysed through: (1) a within-case, within-content analysis, which included summarising the answers to each question provided by selected participants and reviewing the interview content as a whole and (2) a cross-case, within-cohort (by question) analysis, which included summarising the answers to each of the questions provided by all of the participants, and reviewing the summarised answers by question, while referencing the research question. As a form of reliability, the initial three interviews were reviewed in parallel, after which results between two coders were discussed to obtain a consensus, and a code book was developed to continue coding. Participants did not provide feedback during the data analysis stage. Patients or the public were not involved in the design, or conduct, or reporting, or dissemination plans of our research.

Results

10 participants were interviewed between October 2021 and June 2022. Participants included 10 women (100%). Five participants were in the community navigation arm (intervention), five were in the self-navigation arm (control). The experiences and perspectives of interviewees were reviewed and themes for each of the five categories of questions were developed.

Perceptions and role of social needs screening in clinical settings

Participants described their willingness to complete screening questions about unmet social needs; however, some also described these disclosures as a stressful and negative experience. It was noted by participants that comfort with answering screening questions may be dependent on context. For instance, one participant commented, “money wise we were still pretty lucky…maybe if we were really in need, it would feel like ashamed or a little bit frustrated.”

Participants acknowledged that unmet social needs impacted both physical and mental health. Many participants described having unmet social needs as a stressful situation that negatively impacted their own mental health. Many also felt that unmet social needs could be a barrier to a healthy lifestyle by preventing access to healthy foods, physical activity and medications. A participant said, “Income has a lot to do with health, whether you can afford to buy healthy foods or whether you buy the foods that are just unhealthy… as far as housing, depending on where you’re living, whether you’re close to anything so in close proximity to parks and activities.”

Preferences for sharing data with clinical teams

Most participants were comfortable sharing social needs screening information with their healthcare team. That said, participants described that their relationship with the healthcare provider could modulate their comfort. For example, a participant discussed, “It just depends on the person because some people can be very judgey. And then you’ve got to worry, too, when you're in a low-income situation, are they going to judge your parenting? Are they going to think that you can't provide for your kids?” Another caregiver noted, “I would think it would be dependent on the relationship that you would build with them so the trust in the relationship, whether you would want to share information like that with them or not.” As such, a common theme was that trusting, therapeutic relationships promoted comfort with sharing unmet social needs information with clinicians.

While most participants were comfortable having their personal information reflected in their electronic medical chart, some described hesitation. One factor that led to this hesitation was the electronic medical record reflecting outdated information because of inadequate or untimely updates. As one participant said about unmet social needs, “things like that, it can change … So, that information could be there, but yet maybe six months down the road someone’s situation has changed either for the better or for the worse.” Another factor that contributed to their hesitation included sharing sensitive information that may not end up being used to help the patient. For instance, a caregiver explained, “there’s no point in putting myself out there… if it’s not going to help my family.” As such, caregivers expressed that data should only be shared on the electronic chart if the information is accurate and purposeful.

Acceptability of mode of screening

In this study, participants completed screening for unmet social needs via an electronic link.6 Many participants found answering questions in the electronic format flexible and convenient. A caregiver mentioned, “It’s way easier to access, easier to submit because it’s just less travel.” Furthermore, some noted that completing these questions with an in-person format could be uncomfortable, a caregiver explained, “I think maybe in person it would be a little bit more uncomfortable… we would feel a little bit shy or ashamed to just say we can’t provide to our family… But on the paper, it’s different because you don’t really see anybody.” However, participants indicated that the electronic format for the questionnaires had its limitations, including limited opportunities to elaborate and provide context. One participant said, “the online questionnaires are cut and dried, yes/no kind of thing. I think maybe even online would have been better, especially if there’s…a place where the parents can add their own notes.”

Perceptions of social needs intervention

Half of the families were part of the intervention arm of the study. There was variability in participants’ perceptions of the community navigator intervention. Specifically, among the community navigator group, four out of five participants found the intervention helpful. Information about nutrition and housing were valued, and having regular check-ins was useful for clarification and emotional support. For example, a caregiver explained, “I think it was all pretty much helpful. It gave a lot of information that I was looking for…if I couldn’t find the information and they [navigator] had it, they would give me the information they found to add it into what I found.”

Across both the intervention and control group, 3 of the 10 caregivers did not find information provided helpful. They noted that the information was neither relevant, novel nor applicable. A caregiver noted, “I almost felt bad because I didn't qualify for anything…it wasn't geared towards what we needed…” Some participants also mentioned that the questions and resources were not specific nor tailored enough. A caregiver illustrated, “Did you contact your hydro company?…I don't pay … my rent is all inclusive. So, there wasn't really anything that could change there. So, that’s what I mean…if the questions could be more specific.” Another common theme regarding the social needs intervention was that barriers, such as transportation, access to technology, could limit access to resources. A caregiver explained, “It’s like three miles to the closest food bank…I’m not walking there and back with bags.”

The impact of COVID-19 on unmet social needs

Overall, the COVID-19 experience was variable for families enrolled in the trial. A common theme was that COVID-19 was isolating and an overwhelming experience that had a dramatic impact on caregivers’ mental health. Many participants also reported that COVID-19 contributed to a lack of routine and unbalanced lifestyle, including worsened sleep, more screen time, weight gain, less physical activity and more unhealthy foods. A caregiver mentioned, “I think the sleep was bad too because since we’re home all day …we didn’t have any routine.”

Parents were also concerned about the decreased social and education opportunities for children during the pandemic. A parent said, “My kids are scared… and they have lost a lot education-wise. I made sure they were on every single day for online schooling.” On the other hand, many felt that the pandemic had some unexpected advantages, including spending more time with family, more time for new priorities and increased income from government sources. A participant said, “There is a silver lining with it … I couldn’t go to work because my daycare was closed. That gave me the time to upgrade all my schooling stuff to get into nursing… I was bringing in more money with CERB than I was getting between working and Ontario Works.”

Discussion

This qualitative study highlights that screening for unmet social needs in clinical settings is complex and multidimensional. The perception and experience of screening for social needs varied between participants, which related to their personal circumstances and lived experiences. As such, the design of social needs screening processes should be led by the perspectives and needs of patients and families.

Screening and addressing unmet social needs are described as sensitive and potentially stigmatising, similar to what was voiced in our study. Steeves-Reece et al conducted a pragmatic qualitative study with 34 participants who participated in a health-related social needs intervention to understand their experiences.9 A theme was that the screening questions were of a sensitive nature, which could make some hesitant to participate.9 Interviewees were embarrassed around needing help, and worried that accepting help may lead to involvement of child welfare.9 These themes are similar to what participants in our study described. Clinicians and researchers should thus be mindful of the sensitive nature of social needs screening and interventions when engaged in this area of work.

Variability in social needs screening perception and comfort, as illustrated in our study, has been described previously. A quantitative cross-sectional survey on level of comfort with social needs screening among a sample of 160 caregivers,14 included that social needs screening perception and comfort varied. Specifically, the majority of caregivers preferred to be screened in private and fewer preferred to be screened with a healthcare team member.14 Similar to our study results, the preferred screening method was electronic methods, perhaps due to the privacy with electronic methods compared with in-person screening.14 More research is thus needed to better understand parental preferences with social needs screening.

Among the intervention and control arms, there were caregivers who found their intervention helpful and others who did not. Among those in the intervention arm, check-ins with the navigator were noted to be helpful, not only for connecting to resources, but also for social connection and support. This is in keeping with the literature that has identified the degree of support within the social needs intervention as a facilitator to resource connection.15 However, despite not being connected to a navigator, there were caregivers in the self-navigation (control) arm who found the intervention and resources helpful. This suggests that the type of intervention most helpful for families likely depends on their own personal needs and circumstances. Furthermore, we have found that some barriers to connecting to resources included irrelevancy and inaccessibility, similar to what has been reported in the literature.15

Strengths of this study were that it was embedded within a pilot trial to address unmet social needs and will help inform the design of a larger scale trial. There were two notable limitations that may have impacted the study, first only mothers were recruited for the interviews, due to demographics of the sample recruited to the trial. In the future work, it would be important to understand if fathers had similar perceptions. Second, the pilot RCT only included English-speaking participants, which limits the understanding of the data among non-English-speaking families. This is a considerable limitation to the inclusion and diversity of our sample. Further, this study included children living with obesity and enrolled in a weight management programme. In future studies, it would be important to consider the experiences of children and families with other chronic and complex health conditions, as their experiences may be different.

In conclusion, screening for unmet social needs in clinical settings is complex and should be family-centred, including the screening questions to mode of screening, data sharing in the clinical record and ensuing interventions. Perspectives of families should drive the design of future larger scale social needs interventions in clinical settings.

Contributors: CK carried out the initial analyses, drafted the initial manuscript and critically reviewed and revised the manuscript. SD collected data, carried out the initial analyses and critically reviewed and revised the manuscript. SM conceptualised and designed the study and critically reviewed and revised the manuscript. GW conceptualised and designed the study, drafted the initial manuscript and critically reviewed, revised the manuscript and is the guarantor of this work. All authors approved the final manuscript as submitted and agree to be accountable for all aspects of the work.
Funding: The study was supported by the Hamilton Health Sciences Foundation.
Competing interests: None declared.
Patient and public involvement: Patients and/or the public were not involved in the design, or conduct, or reporting, or dissemination plans of this research.
Provenance and peer review: Not commissioned; externally peer reviewed.

Data availability statement

Data are available on reasonable request. Not applicable.

Ethics statements

Patient consent for publication:

Ethics approval:

This study involves human participants and was approved by the Hamilton Integrated Research Ethics Board #12697. Participants gave informed consent to participate in the study before taking part.

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