“We Feel Alone and Not Listened To”: Parents’ Perspectives on Pediatric Serious Illness Care in Somali, Hmong, and Latin American Communities

Approach

We utilized a community-based participatory research (CBPR) approach because it effectively engages community members in the research process as full partners and builds upon communities’ knowledge, expertise, and resources.¹³ CBPR has been shown to improve trustworthiness of research results, increase the likelihood that interventions will be applicable, acceptable, sustainable and disseminated broadly, and address health disparities.¹⁴

Our CBPR research team included a Somali female nurse (A.A.), Hmong female community health worker (S.L.), Latino male physician (R.B.), Latina female nurse (P.P.), Asian male graduate student (J.C.), White female public health researcher (S.P.), and 2 White female physicians (J.N., K.A.C-P). All but 1 research team member (J.N.) were members of SoLaHmo Partnership for Health and Wellness, a community-driven research program. We worked as a central research team, with 3 community-specific teams that included 1 or more language-concordant members: Somali (A.A., S.P., J.N.), Hmong (S.L., K.A.C-P.), and Latin-American (R.B., P.P., S.P.). We partnered with a community advisory board (CAB) consisting of SHL community leaders and parents, which gave input on study design, data analysis, and recommendations. The University of Minnesota Institutional Review Board approved the study (00015786 Approved 6/22).

Setting and Recruitment

We recruited participants through clinician referrals, flyers, social media, and community networks in the Minneapolis-Saint Paul, Minnesota metropolitan area. SHL research team members discussed the study with interested people in their preferred language (Hmong, Somali, Spanish, or English) and evaluated inclusion criteria, including adults aged ≥18 years; from an SHL community; spoke English, Somali, Hmong, or Spanish; and caregiver/parent of a child with a serious illness, defined as illnesses and conditions that pose a significant risk of death and impose physical and emotional distress during the illness trajectory.¹⁵

Data Collection

Researchers obtained participants’ consents, completed demographic surveys, and scheduled participants for a focus group or individual interviews if unable to attend a focus group. Researchers conducted 1.5- to 2-hour community-specific focus groups or individual interviews on Zoom (Zoom Video Communications Inc) or by phone in participants’ preferred languages. We designed structured interview guides based on literature review, professional and community knowledge, and CAB input. The interview guides (translated into Hmong, Somali, and Spanish) inquired about parents’ positive and negative experiences with health care experiences and their recommendations for improvement. All interviews were audio-recorded, anonymized, translated into English, and transcribed. Researchers tried to engender trust by speaking participants’ language and asserting expectations of confidentiality and respect at the beginning of focus groups and interviews.

Data Analysis

For qualitative data analysis, we used an immersion/crystallization analysis¹⁶ process to identify common aspects of parents’ experiences across all 3 communities and a participatory approach¹⁷ to bring community expertise into each step of analysis. These 2 intertwined processes involved repeated interactions between the culturally specific sub-teams and the full team, with input from the CAB. In the initial immersion/crystallization step, the 3 sub-teams immersed themselves in their first transcript by reading, reflecting, taking notes, and discussing their emerging ideas, until they agreed upon 3 to 5 major ideas about parents’ experiences. The full team explored and discussed all sub-teams’ major ideas until we identified major ideas across all 3 communities, which became a coding tree. Each team used the coding tree to analyze each subsequent transcript, discussing and adjusting the codes as relevant. The full team iteratively identified and reorganized the data into major themes and sub-themes that were shared across all 3 communities and chose illustrative quotes. Given the small sample size, we did not analyze the data by parents’ characteristics, data collection methods (focus group or individual interview), nature or severity of children’s illnesses, or extent of health care experiences. When the importance of parents’ education and English language skills became evident, however, we analyzed the data by education and English ability. Finally, we identified recommendations to improve parental experiences based on parents’ recommendations as well as the full team and CAB’s interpretations of parents’ positive and negative experiences.

Participants’ Characteristics

Twenty-six parents participated, including 8 Somali, 10 Hmong, and 8 Latin American parents. All but 1 participants were mothers (96%). By self-report, 58% spoke excellent/good English, and 42% had limited English proficiency (LEP). Twenty-one parents attended 1 of 7 focus groups and 5 parents had individual interviews. Participants’ children included 6 infants, 14 children, 2 adolescents, and 3 adults who had a range of serious illness diagnoses and functional status, including 38% with feeding tubes, 4% with ventilatory support, and 1 infant who died 2 weeks before the study. Fourteen of the children were hospitalized in the last 6 months and 7 had consulted with palliative care (Table 1).

Themes

Somali, Hmong, and Latin-American parents had an overarching desire for 2-way trusting and respectful relationships with medical staff. Three distinct but interrelated themes contributed to enhancing 2-way trusting respectful relationships: informed understanding, compassionate interactions, and respected parental advocacy (Figure 1) (Supplemental Table 1 for expanded illustrative quotes).

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Figure 1.

Interrelated themes contributing to enhancing 2-way trusting respectful relationships.

Recommendations

Table 2 contains recommendations for individual staff members, institutions, and the health care system that addresses parents’ desires for change, related to the 3 main themes.^18-26

Communication and 2-Way Trust

Parents’ understanding of medical diagnoses and treatments and being prepared to take care of their children with serious illness improved trusting relationships. Consistent with prior studies on parents of children with serious illness,¹² we found barriers to informed understanding including insufficient, inaccurate, and unclear information, the overuse of medical jargon, and information being given with little opportunity for questions or discussion. These barriers and their impact on 2-way trust were particularly evident among LEP participants.

Language barriers perpetuate health inequities across the spectrum of care from decreased access to services, decreased utilization of preventive care services,³¹ and increased risks of error, misdiagnosis, and adverse events.^32,33 There is ample evidence that the use of professional interpreters improves the quality of care for LEP patients, resulting in higher patient satisfaction,³⁴ fewer errors in communication,³⁵ reduced disparities in utilization of services,³⁶ and improved clinical outcomes³⁷ when compared with nonprofessional or no interpreter. Despite these proven advantages, LEP parents in our study consistently expressed concerns that interpreters hindered 2-way trust in the health care team. While some parents preferred trusted family members as interpreters, studies have shown risks in utilizing nonprofessional interpreters, including misinterpretation and increased conflict between families and health care providers.³⁸ High quality professional interpreters provide a necessary link to establishment of 2-way trust between health care providers and LEP families.

Compassion and 2-Way Trust

Overall, caring and compassionate interactions with the health care team facilitated 2-way trust. Attention to patients’ religious, spiritual, and cultural needs in the context of their child’s illness instilled a sense of trust from families that their child would be well cared for. On the contrary, parents’ experiences of racism in the health care system increased their distrust in individuals and the system. Parents’ social attributes, such as low socio-economic status, inadequate insurance, or LEP, may have increased their vulnerability to the power imbalance between themselves and medical staff.

Racism is a key cause of health inequities through its contribution to poor access to health care, lower quality of care, increased health risks, and poor health status for marginalized communities.³⁹ The literature demonstrates a measurable impact of racism, such as reported by our participants, on health care delivery and health outcomes.⁴⁰ These parents’ experiences with racism are consistent with studies of people from diverse backgrounds in various health care settings,⁴¹ reinforcing that interventions and policies aimed at minimizing bias and discrimination in the health care setting are crucial to health equity.

Advocacy and 2-Way Trust

Parent participants highlighted that when they were heard and they felt respected as experts, 2-way trusting respectful relationships were improved. Parents of children with chronic and serious illnesses become experts in their child’s care, as they learn and advocate for their child within the medical system,⁴² and continued advocacy allows parents to develop greater self-confidence as they learn new skills.⁴³ In the existing literature as well as our study, parents report feeling unheard or being dismissed in the clinical setting⁴⁴ and report a desire for staff to regard, respect, and trust them as experts.⁴⁵ Parents of children with serious illness, similar to parents in our study, must balance their need and desire to advocate as experts on their child with their concern of being perceived as adversarial.⁴⁵

Patient trust in health care clinicians is well researched. Characteristics of clinicians that correlate with trust include patient-centered communication, showing empathy and compassion, and providing high quality care.⁴⁶ Our study adds to this knowledge base by identifying clinician trust in parents as a key contributor to parent trust in health care providers. Two-way trust could contribute to improved communication, understanding, shared decision making, and health care outcomes.⁴⁶ Our study affirms that clinician behaviors that engender trust, such as active listening and questioning, collaboration, and shared decision making, is especially important for parents from ethnically diverse communities.

Interconnections

The 3 major components of 2-way trust are interconnected, with each aspect impacting the others. Studies show that clinician behaviors such as patient-centered communication, showing empathy and compassion, and providing high quality care,^45,47 engender trust. Our study affirms these are important for parents from ethnically diverse communities and adds to this knowledge base by identifying clinician trust in parents as a key contributor to parent trust in health care providers. Two-way trust has been speculated to contribute to improved communication, understanding, shared decision making, and health care outcomes.⁴⁸ The recommendations in Table 2 are intertwined also, so that if 1 recommendation improves an aspect of trust, it may improve other aspects of trust. For example, improving parent-child-staff continuity could improve parents’ understanding, sense of caring, and confidence in advocating, which then would improve 2-way trusting relationships. Studies have shown that patient-clinician continuity is an important contributor to trust.⁴⁹

Limitations

This study had several limitations. The small sample precluded analyzing by variations in parents’ characteristics (gender, race/ethnicity, religion) and parents’ experiences based on the child’s condition (diagnoses, treatments, and length of time since diagnosis). Additionally, our conducting both focus groups and individual interviews may have influenced our data, given that people may express their experiences differently in group settings than in individual interviews. As a qualitative study in 1 metropolitan area, these results cannot be generalized to parents from all SHL communities, living in other states, and interacting in other health care systems. Nonetheless, this formative qualitative study with a purposive, criterion-based, stratified sampling included parents from diverse socioeconomic, educational, and experiential backgrounds, and yielded coherent themes from 3 diverse communities of shared desires for improved parent-staff relationships.