Social support experiences of hispanic/latino parents of childhood cancer survivors in a safety-net hospital: a qualitative study

Abstract

Purpose

To describe the social support experiences of Hispanic/Latino parents while caregiving for childhood cancer survivors.

Research approach

Semi-structured one-on-one interviews were conducted among 15 caregivers from a safety-net hospital in Los Angeles. A thematic analysis approach was used to analyze data.

Findings

The positive influence of social support throughout their caregiving experience included (1) sharing information-enhanced knowledge, (2) receiving comfort and encouragement, (3) receiving tangible assistance reducing the caregiving burden, and (4) enhancing caregiving empowerment/self-efficacy. Sub-themes regarding the lack of social support included (1) being a single parent and (2) family and friends withdrawing after the child’s cancer diagnosis.

Conclusion

We found Hispanic/Latino parents strongly value social support as it enables them to have essential resources that support caregiving for their child and themselves. Efforts should ensure that caregivers are routinely screened to identify their supportive needs so that support services for caregivers can be optimized and tailored, as those with a lack of social support may experience excessive caregiver burden.

Keywords:

• Hispanic/latino
• parents
• caregivers
• childhood cancer survivors
• social support

Introduction

Due to improved treatment cure rates, the number of long-term childhood cancer survivors (CCS) has increased over the past 30 years.^1,2 In the United States (U.S.), there are more than 500,000 childhood cancer survivors (CCS).³ Often, parents serve as the primary caregivers throughout their child’s cancer journey by providing their child with medical, informational, and emotional support throughout their treatment and into long-term survivorship.⁴ Even when CCS become young adults, parents play a role in helping them transition from pediatric to adult-focused survivorship care.^5–7 Parents also assume various new roles and experience a shift in their self and social identity immediately and long term when their child is diagnosed with cancer.^8,9 For instance, during the treatment phase, the caregiving demand for parents can be so high that it can create employment problems and increased financial stress.¹⁰

Yet, caregivers of CCS often face barriers when completing these responsibilities, including a lack of knowledge of the healthcare system, lack of adequate resources, and in the case of some parents a lack of English language fluency. Caregiving burden can impact parents’ health-related quality of life (HRQOL), especially their mental and emotional well-being.^10,11 Emerging studies show that parents’ psychological distress is related to poorer HRQOL and mental health for CCS and that Hispanic/Latino families may be at higher risk for such outcomes.^12,13 These studies suggest that unique contextual and cultural factors may influence outcomes for Hispanic/Latino families, such as acculturation, immigration status, and linguistic aspects.

The role of social support has been studied extensively among non-Hispanic white populations and supports the notion that increased support is related to lower psychological distress and better well-being for both CCS and their parents.^10,14–17 Thus, we can extrapolate to Latino families that social support may also be associated with better HRQOL. Social support is described as people’s experiences with receiving assistance or comfort from others (usually within their close networks).¹⁸ The four most common domains of social support include informational, instrumental, appraisal, and emotional support.¹⁹ Informational support is described as the sharing of information during a time of stress to help another person problem-solve.¹⁹ Instrumental support consist of providing tangible goods and services such as financial assistance.¹⁹ Appraisal support is described as sharing information to help an individual self-evaluate and affirm their acts or statements.¹⁹ Emotional support consist of empathy, love, trust, and making an individual feel cared for. For parents, their primary source of support may come from their partner/spouse;¹⁴ while for CCS, their primary source of support most often comes from their parents.¹⁵ Additionally, a significant source of emotional and informational support is received from other survivors, caregivers, and medical providers typically this occurs while in the clinic/hospital setting and they are going for doctor appointment.^20,21 For both CCS and parents, higher emotional and instrumental family support (e.g. assistance with childcare, transportation) is related to better psychological adjustment.¹⁴ Additionally, greater social support is associated with greater caregiver use of positive spiritual coping.²²

While all forms of social support are important and beneficial for CCS and parents, it is not always available. Some parents and CCS report that they do not receive adequate informational and instrumental social support while others experience a decline in emotional social support once treatment ends from family members, healthcare providers, and friends.^15,23,24 Among caregivers of long-term CCS, who were asked about their need for more support on six domains (e.g. job-related, financial, family, psychological, medical, or other), mothers were more likely to need more support immediately after the treatment phase.²⁵ In comparison, parents whose child was dependent on them and who experienced late effects were more likely to report needing more support post-treatment.²⁵

There is a lack of research on Hispanic/Latino CCS parents’ experiences throughout the cancer treatment and post-treatment. Further, even less is known about Hispanic/Latino parents’ social support experiences, which may vary in important ways, such as having unique social needs, social networks, and cultural values that impact the use of support services. This study used a qualitative approach to address these existing knowledge gaps by providing an in-depth description of the social support experiences of Hispanic/Latino parents of CCS throughout their child’s cancer treatment.

Methods

Study design

The University of Southern California’s Institutional Review Board approved this study. A qualitative approach was used with semi-structured in-depth one-on-one interviews to facilitate open discussion. All aspects of this study were conducted in accordance with the Declaration of Helsinki.

Participants and recruitment

Eligible caregivers were identified as a parent or family member who acted as a primary caregiver for their child who was diagnosed before the age of 18 years and was in remission, self-identified as Hispanic/Latino, and was proficient in English or Spanish (e.g. able to communicate in either language). Caregivers were recruited using a purposive sampling at a large public safety-net hospital in Los Angeles, California from July to September 2020. Safety-net hospital primarily provide care for highly vulnerable patients, including individuals who have lower socioeconomic status, who are uninsured or underinsured, and who identify as racial and ethnic minorities.²⁶ All patients who were recruited were cared for in the long-term follow-up clinic at LAC + USC, with access to a pediatric oncologist, nurse educator, social worker, and nutrition support, and with care and screening administered as per Childrens Oncology Group survivorship guidelines.

In brief, the study was introduced to eligible participants during their clinical visits or via phone by R.C. Interested participants were then contacted by Carol Ochoa-Dominguez (C.O.D). over the phone to discuss the purpose of the study further, they were told about the study incentive (e.g. gift card), and were scheduled for a one-on-one telephone interview. A detailed description about the current study data collection procedures has been previously published.²⁷

Interview guide and data collection

The interview guide contained open-ended questions asking participants about key components and characteristics of the caregiving experience (e.g. barriers and facilitators to caregiving) and to describe their experiences with social support, communication, and child adjustment. As such, we planned to publish multiple papers from this qualitative data as we collected rich data that supported separate focuses. Our first paper, focused on the barriers and facilitators to caregiving and this paper focuses on caregivers’ experiences with social support.

Data collection occurred during COVID-19 restrictions, between July and September 2020. Consequently, all interviews were conducted by phone and audio recorded after receiving verbal consent. Interviews were conducted by C.O.D (in English or Spanish based on the participant’s language preference), a bilingual Hispanic/Latina doctoral student in health behavior research, who is trained in qualitative research methods and whose research focuses on cancer survivorship and caregiving. The second coder, L.C., was a medical resident in the safety net hospital in which we collected the data, therefore, she was familiar with the patient population. The average interview duration was approximately 60 min and included a short socio-demographic survey. Field notes and case summaries were documented after each interview and described the general impressions and initial ideas related to the research question. After the interview, participants were compensated with a $25 gift card for their time.

Data analysis

Interviews were transcribed by a bilingual professional transcription service. The approach used was thematic analysis and memo-writing strategies.^28,29 All data analysis was done in the language in which the interview was conducted (e.g. either English or Spanish).

Analysis for each interview began by C.O.D and L.C., two bilingual coders, reading and open coding all the interview transcripts. These codes were then organized into an initial codebook and a series of meetings followed with other team members to finalize the codebook. During these meetings, the research team discussed the coding scheme and used gerunds to determine how to cluster the codes into themes.³⁰ Subsequently, once the research team agreed on the themes and subthemes, a final codebook was created, including illustrative examples from the interviews. Finally, transcripts were uploaded into Dedoose software, to organize data and apply final codes. During this step, analytical memos were written to document thinking processes and connections within the data.²⁹ When selecting quotes, if the quote was in Spanish, it was translated into English by a bilingual team member. The rigor and trustworthiness of the data were assessed by the Consolidated Criteria for Reporting Qualitative Research (COREQ) 32-item checklist, which includes reporting about the research team, study methods, and the analysis and findings (see Supplemental File S1).³¹

Results

Participants characteristics

In total, 20 parents were contacted, and all expressed initial interest and were scheduled to be interviewed. However, among those twenty parents, interviews with five parents were unable to be completed as they did not respond after initial scheduling, despite being called up to three times. Thus, there were 15 total interviews with parents whose data were used in this analysis.

As shown in Table 1, the sample of parents was composed of mostly mothers who were Spanish-speaking and foreign-born Hispanic/Latinos of Mexican descent. On average, foreign- born caregivers had arrived in the U.S. over 22 years ago. The mean age of parents and CCS was 39.3 and 7.3, respectively. Ten of the 15 CCS had been diagnosed with leukemia, two were diagnosed with Hodgkin lymphoma, and the remaining three with other cancer types (consist of sarcoma, ovarian, and unknown (parent unable to recall type of cancer)). Nine of the caregivers reported that their child had finished treatment more than two years ago.

Table 1. Parent and CCS demographic characteristics.

Variable	Parent	CCS
Language (%)
Spanish	10 (67%)
English	5 (33%)
Gender (%)
Male	1 (7%)	9 (60%)
Female	14 (93%)	6 (40%)
Age at time of diagnosis; mean (SD^a)		7 (range: 1–14)
Current age in years; mean (SD^a)	39 (range: 23–58)	14 (range: 5–22)
Marital status (%)
Single	2 (13%)
Married/Living with partner as married	10 (67%)
Divorced/Separated	3 (20%)
Highest education level (%)
<Highschool	9 (60%)
Highschool/GED	3 (20%)
Some college/vocational training	3 (20%)
Household income (%)
<20,000	5 (33%)
20,000-39,999	5 (33%)
40,000-59,999	3 (20%)
60,000-79,999	2 (13%)
Birthplace (%)
U.S. born	4 (27%)
Foreign-born	11 (73%)
Number of years in the United States; mean (SD^a)	23 (range: 2-31)
Type of health insurance (%)
Public	8 (53%)
Employment (private)	2 (13%)
None	5 (33%)
Cancer type^b (%)
leukemia		10 (67%)
Hodgkin lymphoma		2 (13%)
Other^c		3 (20%)
Length of time finished treatment (%)
<1 year		4 (27%)
1-2 years		2 (13%)
2+ years		9 (60%)

Note. ^aSD = standard deviation.

^b CCS cancer type is self-reported by caregivers.

^c Other-type of cancers consist of sarcoma, ovarian, and unknown (parent unable to recall type of cancer). Percentages and mean values were rounded up.

Main results: overview of the findings

Caregiver experiences yielded two related primary themes: the positive influence of social support, when available, and the challenges associated with lack of social support. All caregivers spoke about the positive influence of social support throughout their caregiving experience (both during and after treatment). Participants’ descriptions of the influence of social support included four subthemes: (1) receiving tangible assistance reducing the caregiving burden, (2) receiving comfort and encouragement, (3) sharing of information enhanced knowledge, and (4) enhancing caregiving empowerment/self-efficacy. Half of the participants discussed sub-themes regarding the lack of social support which included (1) being a single parent and (2) family and friends withdrawing (or separating themselves) after the child’s cancer diagnosis. Themes and subthemes are summarized in the following sections and presented in Table 2.

Table 2. Summary of social support both the influence and lack of social support.

Emergent Themes	Subthemes	DESCRIPTION
INFLUENCE OF SOCIAL SUPPORT	Sharing of information to enhance knowledge	Verbal or documented information shared (e.g. educational resources; in the language prefer) increases caregivers’ knowledge and empowers them throughout their caregiving journey.
	Receiving comfort and encouragement	Receiving comfort and encouragement helped caregivers cope with the everyday challenges of a child’s cancer journey.
	Receiving tangible assistance reduces the caregiving burden	Helped make the caregiving experience a bit more manageable when they had some assistance with these. Caregiver burden includes the emotional, social, and financial impact of providing care.
	Enhancing caregiving empowerment/self-efficacy	Prepare caregivers by providing them with knowledge and skills to perform necessary medical procedures on their child which increases their confidence in caring for CCS.
LACK OF SOCIAL SUPPORT	Single parent	Going into caregiving as a single parent or being separated makes it more challenging to be a primary caregiver, financial supporter, and care for other children.
	Family and friend withdrawal	Intentional versus unintentional extended family withdrawal of familial support.

The positive influence of social support

Receiving tangible assistance reducing the caregiving burden

All caregivers spoke about the positive influence of social support throughout their caregiving experience (both during and after treatment). Social support came in many forms, but the most common form was tangible assistance that reduced caregiving burden. Tangible assistance included financial support for groceries, bills, and rent, as well as essential services such as transportation, work hour flexibility, childcare for other children and help with household maintenance. This assistance from family and friends during cancer treatment was particularly valued as primary caregivers were always in the hospital and, thus, some were fired or stopped working to focus on their child. For example, multiple caregivers shared that their family and friends offered them a place to stay until they could improve their financial situation and have a permanent home. One caregiver (participant 10) shared that their family told them: “Take care of your child with what he needs and do not worry about rent or anything [sic].” Other caregivers described financial assistance from the hospital, government agencies and foundations as immensely supportive when they lacked a personal social network. Further, some caregivers mentioned that having access to Medicaid benefits was the most important assistance they could get as it ensured continual health insurance coverage for their child (even after treatment ended) which was essential for their well-being as it meant their child would continue to have cancer surveillance.

Receiving comfort and encouragement

Comfort and encouragement were other forms of social support that helped caregivers cope with the everyday challenges of their child’s cancer journey. Caregivers described hospital visitation and check-in calls from family/friends, and encouragement from more seasoned parents of children with cancer in the hospital. Several caregivers also commented on how they were constantly reminded by family and friends to have a positive mindset with phrases such as they “[would] return home soon” (participant 11), their child would get “cured” (participant 10), and post-treatment they were told to “stay positive; there’s nothing wrong with [their child]” (participant 6). Caregivers also derived encouragement thinking beyond cancer through the efforts of the Make-A-Wish Foundation who provided patients and family members with local trips including visiting museums, theme parks, and family camps to distract families from their everyday routine. Caregivers described efforts of family/friends to pray for the child’s well-being and give “animo” [“courage”] to parents by sending them “songs, videos, and words [from the Bible]”. These interventions helped caregivers “not [feel] alone.” One caregiver recounted words of encouragement that they received: “Everything will be fine, you have everyone’s support, don’t be sad” (participant 3).

Sharing of information enhanced knowledge

Verbal or documented information shared (e.g. educational resources from the treatment team in the language desired) was also an important form of social support throughout their caregiving journey. Receiving pamphlets and books about cancer diagnosis, long-term side effects, and medical checkups helped caregivers understand and navigate their child’s cancer. Some caregivers mentioned receiving a comprehensive history of their child’s medication and treatment regimen from the healthcare team. Often, this was done verbally, though sometimes they were given this information in a written document which the caregiver would save. A few caregivers also mentioned receiving information from other parents on how to navigate being the primary caregiver, and other more private matters such as referrals to immigrant advocacy organizations to address fear regarding immigration status and risk of deportation. Furthermore, caregivers shared that receiving and learning how to use these various resources including public benefits, local community support programs, and legal aid organizations to support the child and family was important both during and after treatment.

Enhancing caregiving empowerment/self-efficacy

Details about expected adverse treatment effects and anticipated warning signs/symptoms, as well as recommendations for management of these effects, helped empower caregivers by providing a sense of control. Caregivers shared that having opportunities to be involved in medical caregiving during the initial hospitalization alongside the nurses made it easier for them to transition to providing care at home on their own. Explanations of terminology (e.g. what does “[your child’s] immune system is very delicate” (participant 4) actually mean) and providing skills to perform necessary medical procedures on their child (e.g. daily venous catheter maintenance) also increased caregiver confidence. Caregivers felt that the increased knowledge and skills improved their confidence, such that they would “not panic” (participant 12) upon discharge home. The more caregivers started to gain medical knowledge the more they were able to remain calm because “[they] knew [what] was going to happen [and] [that expected adverse events were not due to] something [they] did wrong” (participant 1).

Challenges with a lack of social support

Being a single parent

Half of the caregivers shared that they experienced a lack of social support. Single parents described juggling multiple roles including providing care for the patient, financial support for the entire family, and the need to also care for other children. One caregiver expressed that during treatment, “if there were two of us, it would have been easier” (participant 5). This sentiment was echoed by another caregiver who shared that as a single parent and young “teen mom,” (participant 6) she often felt alone. In addition, these caregivers mentioned that the family of their ex-partner were rarely supportive. Lack of childcare options also precluded breaks from their responsibilities.

Family and friends withdrawing (or separating themselves)

Even in two-parent households, some caregivers described how going through cancer treatment “dismantled their relationship” and how “[the stress of the diagnosis/therapy could] break the whole family apart.” Another parent shared that the couple would “blame each other for [child’s diagnosis]” and soon after the diagnosis they separated (participant 5). Caregivers also described family and friends withdrawing from them during their child’s treatment phase, which they believed was due to a lack of understanding and empathy.

When my son got sick…everyone left…It hurt because my family, my blood, turned their backs on us. (participant 1)

There are people who stopped talking to me because they thought that, in the situation I was in, I was going to bother them… (participant 8)

Discussion

Findings from this study contribute novel information about the social support experiences of Hispanic/Latino caregivers, in particular, caregivers of young children with a cancer diagnosis and who are treated in the safety net setting. Our study found two opposing but related themes that are universal to caregiving experiences: first, caregivers expressed the positive influence of social support when available; second, caregivers described the challenges associated with a lack of social support. Our findings also highlight familial, immigrant-related, and structural issues with support that are unique to our Hispanic/Latino caregiver population.

Many caregivers reported that social support in the form of information sharing, by the health care team and other caregivers, increased their health literacy and enhanced their healthcare self-efficacy. This finding highlights the importance of allotted time by the healthcare team to explain medical procedures, information about cancer and its treatment to caregivers so that they feel better prepared. Additionally, raising awareness of financial resources and assistance was especially important among Spanish-speaking caregivers as they shared often under-utilizing or being aware of these resources. This study contributes uniquely to understanding the experience of an under researched caregiving population, immigrant families where citizenship status may present challenges. Caregivers reported the importance of information sharing regarding the immigration process within their caregiver networks. Our results also suggest that mixed-status households with undocumented caregivers added an additional layer of stress to those families due to the fear of deportation. Future studies should focus on exploring other challenges that immigrant caregivers face such as the public charge rule and fear of applying for public benefits.

The majority of caregivers discussed the crucial role of tangible assistance and receiving comfort and encouragement from their families, friends, and extended social networks. In the absence of familial ties in the U.S, caregivers described the emergence of ‘social capital’ from other caregivers through their shared experience and other people they interacted with while being in and out of the hospital.³² Findings from this study also revealed the importance of the caregivers’ age, which was compounded by adverse social and structural determinants of health, including economic insecurity, housing instability, and a lack of social capital. Our results indicate that in order to maximally facilitate caregivers’ ability to cope with their child’s cancer, it is important that providers first systematically collect and document social needs in the hospital/clinic setting. Additionally, significant benefit can arise from enhancing the social networks that parents utilize to increase knowledge about safety net and respite care programs to alleviate caregiver burden such as support groups, mental health counseling, childcare locator services, In-Home Supportive Services (IHSS) Program, and other support from faith-based organizations. Furthermore, when targeting caregivers with a lack of social support it is important to provide them with tools and information about caregiving resources available from the state and the community. Moreover, age may be an important factor in caregiver burden such that younger parents may be less prepared and have less resources, both emotional and material, to take on the challenges of caregiving for their child.

Limitations

This study has some limitations that are important to consider when interpreting findings. First, the parents interviewed for this study were recruited from a single safety-net clinic in Los Angeles County. Thus, future research should recruit from multiple sites to further explore caregivers’ experiences. Second, the data was collected during the beginning of the COVID-19 pandemic, and as a result caregivers recollection of their social support experiences may have been altered or affected by the events of this time, as well as subject to recall bias. Lastly, this study was largely although not exclusively based on the experiences of mothers. Fathers and other caregivers may have distinct experiences that were not captured in these interviews.

Implications

When a child is diagnosed with cancer, parents are the primary caregivers and the presence or absence of social support may impact their caregiving experience, particularly for Hispanic/Latino families who are medically underserved. We found:

• Hispanic/Latino parents strongly value social support. Given their precarious socioeconomic situation, many of the caregivers in our study expressed that these resources were essential to enable effective caregiving.

• Tangible and caregiving specific support provided by institution was particularly effective at relieving caregiver burden. However, in addition to accessing available state and community resources, we also found that families primarily seek social support from within immediate family members and friends.

• Our findings support efforts to routinely screen caregivers for suboptimal social support and to identify their supportive needs, enabling targeted direction of caregivers to available resources.

Acknowledgments

The authors would like to extend our gratitude to the men and women who provided insight and perspective and without whom this work would not be possible.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Funding

This research was supported by an institutional Southern California Clinical and Translation Science Institute (SC CTSI) grant awarded by the University of Southern California (K.A.M.). This work was supported by grants UL1TR001855 and UL1TR000130 from the National Center for Advancing Translational Science (NCATS) of the U.S. National Institutes of Health. The content is solely the authors’ responsibility and does not necessarily represent the official views of the National Institutes of Health. Funding was also provided by the National Institutes of Health, National Cancer Institute (5T32CA009492-34, C.Y.O.D.), and research was supported by the National Cancer Institute of the National Institutes of Health under Award Number K00CA264294 (P.I.: C.Y.O.-D.).