Family Resilience From the Perspective of Caregivers of Youth With Sickle Cell Disease

Abstract

Families coping with Sickle Cell Disease (SCD) often face heightened psychosocial risk factors, and research in pediatric SCD has often focused more on this area than resiliency factors. The aim of this study was to gain a better understanding of family resiliency in SCD based on caregiver perspectives. A secondary qualitative analysis was conducted with data from a mixed-methods study of caregivers of youth with SCD (n = 22). Qualitative analyses involved coding based on two resiliency frameworks, organizing coding categories into themes, and systematically reintegrating these themes into a conceptualization that reflected family resiliency. Themes aligned well with the resiliency frameworks, and related to family belief systems and meaning-making around SCD (acceptance of SCD, positive attitude, religious faith), family organization and adaptation (flexibility, stability, social supports), and the importance of communication and problem-solving. Study findings emphasize the importance of assessing resilience in families of youth with SCD, and suggest the potential clinical benefits of developing psychosocial interventions based on family strengths.

Introduction

Research examining child and family adaptation in the face of a chronic illness has been influenced significantly by theoretical models that take into account factors such as illness parameters, child/parent adjustment, child/parent cognitive appraisals (e.g., locus of control, self-efficacy), child/parent coping strategies, family environment, and the wider social ecology.^1,2 When aspects of these models are studied within pediatric SCD, they often tend to focus more on the individual child’s adjustment and quality of life,^2–4 caregiver adjustment and illness-related stress,^5,6 and pain coping factors.^7–9 Overall, studies to date have focused more on examining child and caregiver risk factors for poor adaptation rather than more strength-based family resiliency factors.¹⁰

Attention to resiliency-based family process factors in pediatric SCD can be facilitated by theoretical frameworks that can provide a more comprehensive and nuanced view of these factors. Park’s meaning-making model^11,12 and the Walsh Family Resilience framework^13,14 are two such theoretical frameworks. The Park meaning-making model includes several tenets that form a pathway describing adjustment to stressful circumstances.¹² First, people possess an orienting system based on beliefs and their personal sense of meaning or purpose. When a potentially stressful situation arises, such as management of SCD, family members appraise the situation and assign meaning to it. If this meaning is discrepant from one’s orienting system, people may experience distress, which leads to a process of further meaning making to try to reduce the discrepancy. Success in this process (meanings made) leads to better adjustment and may involve outcomes such as acceptance, reappraisal of the stressor, and perceptions of growth or positive life changes. The Walsh framework has three main themes each consisting of several subthemes. The first main theme aligns well with the Park model and focuses on belief systems, including meaning-making around adversity, adopting a positive outlook, and spirituality and transcendence. The second main theme relates to organizational patterns, which emphasizes flexibility and connectedness between family members, and mobilization of resources within the wider social ecology. The third main theme pertains to communication and problem solving, which focuses on clarity of information, open emotional expression, and collaborative problem-solving. The Park model and Walsh frameworks have been used in various populations including adults, youth, and caregivers coping with illness, trauma, and bereavement.^15–21 To date, neither framework has been studied in pediatric SCD.

The aim of this study was to use qualitative methods to examine the perspectives of caregivers of youth with SCD regarding family resilience. Qualitative research methods are increasingly being utilized to capture the “lived experience” of patients and families and can provide rich and nuanced data to illustrate the complexities of psychosocial adaptation to chronic illness.²² Both the Park and the Walsh Family Resilience frameworks were identified as being integral to understanding the data, hence they were integrated during the development of the data analysis protocol. The long-term goal of this research is to further our understanding of family resilience in the context of a chronic illness associated with heightened socio-ecological risk factors to inform the development of clinical strategies to promote enhanced health outcomes and reduce health disparities.

Methods

Procedure

This study was a secondary analysis of mixed methods data originally collected to assess the acceptability and utility of the Psychosocial Assessment Tool (PAT©)^23,24 as a screener of psychosocial risk in families of youth with SCD.²⁵ This study was approved by the hospital’s Institutional Review Board. Eligible participants included adult primary caregivers of patients from infancy to 21 years with any type of SCD, including SS, SC, and Sickle beta plus and beta 0 thalassemia. A purposive sampling strategy was used to recruit a diverse sample in terms of patient age, gender, and SCD type, as well as caregiver age.²⁶ As recruitment progressed during the study, the frequencies of participant demographic variables were continuously monitored to help inform the ongoing recruitment strategy. All eligible caregivers were approached during their child’s regularly scheduled outpatient SCD clinic visits after being identified through a review of medical records. Of the 68 caregivers who were approached for the study, 6 (8.8%) specifically declined to participate and 19 (27.9%) indicated possible interest but did not follow through to complete the study (e.g., did not respond to follow-up recruitment calls). Participants provided informed consent after reviewing study procedures with members of the study team. Caregivers completed a brief demographic form and the PAT via iPad tablet. Caregivers were subsequently invited to participate in a qualitative interview focused on family psychosocial challenges and coping strategies, as well as to provide feedback regarding the acceptability and utility of the PAT. The interviews were conducted in a private consultation or conference room and lasted an average of 38 minutes (range = 24–65). Interviews were conducted by a clinical research coordinator, a post-doctoral psychology fellow, or the SCD social worker. Each interviewer received training and supervision in qualitative interviewing from an expert qualitative researcher. Participants were compensated with a $25 gift card. All interviews were digitally recorded and professionally transcribed. Each transcript was reviewed to ensure accuracy.

Interview Guide

The semi-structured interview guide was based on the cognitive interview method of instrument development and validation, and focused its questions on the acceptability and relevance of PAT items within the context of the psychosocial challenges facing these families.²⁷ The interview was structured with broader questions about functioning and psychosocial challenges, followed by specific follow-up questions regarding resilience factors, including family strengths and adaptive coping strategies.²⁵ Feedback on the interview guide was obtained from the SCD multidisciplinary team, an expert in the area of qualitative research, and an external consultant with expertise in psychosocial functioning in pediatric SCD. Questions were mostly open-ended, and included items that probed for family values (e.g., “What is important to your family?”), family strengths (e.g., “Are there areas of strength that the PAT does not ask about?” and if so, “How is this an area of strength for your family?”) as well as coping strategies and resources families used to cope with SCD (e.g., “What resources do you use to help cope with SCD?”).

Data Management and Analysis

Data management and the rigor of the iterative analytic process were based on current standards including the concept of trustworthiness.^28,29 We used a systematic process that included training and ongoing consultation with a qualitative expert, use of a codebook, double coding, maintaining an audit trail, use of qualitative analytic software, and ongoing input of the research team. Secondary analysis of the qualitative data from the original study was a directed content analysis with initial codes developed based on existing literature and theory.^30,31 Analysis was initially sensitized by the Park meaning-making model and relevant literature on coping in SCD, which led to the development of a preliminary codebook prior to reviewing interview transcripts. This preliminary codebook was uploaded into Dedoose™ along with the transcripts for the initial open coding of the data by two study team members (graduate student and clinical research coordinator). These two team members performed blinded independent coding for five transcripts, and then met with the lead author to review the coding. This revealed the family processes in the data which were consistent with the Walsh Family Resiliency framework. The three study team members wrote memos describing how the data potentially fit both frameworks and subsequently met to facilitate the creation of a codebook that integrated both theoretical frameworks. To ensure rigor and trustworthiness of the data analyses, written documentation after team discussions and drafts of codebooks were maintained as an audit trail.

During the next phase, guided by the integration of the two frameworks while remaining open to other factors, the initial two coders performed blinded independent coding for five transcripts and then met to discuss discrepancies until agreement was reached. The remaining transcripts were then coded using the finalized codebook. Changes to the codebook were only made to elaborate on definitions to showcase the variability across families. The data was downloaded into an Excel spreadsheet organized by codes. Coding categories were organized into themes, and these themes were then systematically reintegrated into a conceptualization that reflected family resiliency.

Results

Participants

Caregivers who completed the qualitative interview (N = 22) were mostly Black (90.9%) and female (95.5%). They included 19 mothers, 2 female non-biologic legal guardians, and 1 father. The youth with SCD were evenly split across gender (45.5% female), were all identified as Black, had an age range of 10 months - 19 years, and most had SS type (77.3%). The majority of these families had Medicaid public health insurance (63.6%). PAT-only and PAT+interview groups only differed in terms of caregiver median age, with the PAT+interview group (Mdn = 40.50; IQR = 34 – 47) being significantly older than the PAT-only group (Mdn = 32.00; IQR = 30 – 38.5).²⁵ This was likely due to having a wider upper age range in the PAT+interview group, with four caregivers who were over 50 years of age (the high end of the age range for the PAT-only group was 48 years). Please refer to Table 1 for participant characteristics.

Table 1.

Participant Characteristics (n = 22)

	Caregivers	Patients
Gender:
Male	4.5%	54.5%
Female	95.5%	45.5%
Age:
M (SD)	40.81 (10.02)	10.37 (5.82)
Median	40.50	11.80
IQR	34 – 47	4.44 – 14.94
Range	20 – 65	10m – 19y
Race:
Black	95.5%	100%
White	4.5%	-
SCD genotype:
SS	-	77.3%
SC	-	22.7%
SB0	-	-
Health Insurance:
Private	-	36.4%
Medicaid	-	63.6%

Themes

An overview of the relevant family resilience themes is summarized in Table 2.

Table 2.

Family Resilience Themes

Belief Systems

1. Meaning-making linked to acceptance of SCD, spiritual faith, and benefit finding

• Caregiver acceptance of SCD often related to spiritual faith, and promotes active role in managing illness

• Having SCD helps youth have a “bigger sense” of the world and life

2. Positive outlook helps caregivers, their children, and the SCD community

• Caregivers model a positive outlook for their child and draw strength from their child’s positive attitude

• Caregivers share positive outlook with others to strengthen community

3. Coping with SCD seen as transformative

• Caregivers are able to adapt to SCD over time and show growth in coping

• Caregivers value giving back to SCD community

Organizational Patterns

4. Flexibility, stability, and guidance important to management of SCD

• Flexibility in family roles helps in covering necessary tasks

• Maintaining child engagement in valued activities is important

• Role of caregiver as teacher and mentor

5. Connectedness with family and SCD community helps with coping

• Family acting as a team is critical in coping with SCD

• Coping with SCD helps bring family members together

6. Mobilizing social and economic resources critical for this high-risk population

• Social support from multiple sources (family, friends, hospital team, online) is integral to coping

• Families prioritize seeking information about SCD

Communication / Problem-solving

7. Clarity and consistency of information sharing optimizes care

• Clear communication between caregivers ensures consistency in care

• Educating children about SCD helps them manage illness

8. Open emotional expression normalizes experience

• Sharing thoughts and feelings with others helps caregivers cope with SCD

• Caregivers often share concerns and worries with medical team

9. Collaborative and proactive problem-solving increases caregiver confidence

• Proactive problem-solving helps in coping with unpredictability of SCD

• Working proactively with hospital and school teams to provide supports

Belief Systems

Meaning-making linked to acceptance of SCD, spiritual faith, and benefit finding

When discussing SCD, several caregivers mentioned phrases such as, “It is what it is” and “I don’t think it’s a disaster. It’s life,” indicating a certain level of acceptance as well as an ability to normalize and contextualize distress. One caregiver connected her acceptance of SCD with her active role in managing it, stating “I mean his sickness I guess, and his outcome, depends on me doing all the right things … We can’t blame ourselves. You’re born with what you’re born with.” For many caregivers, their spirituality and faith in God appeared to help them accept their child’s illness and find the strength to cope: “I’d just say it was meant to be … the good Lord doesn’t give you more than you can bear. If you have something, don’t say, why me? Just accept it. And then just pray.” Some caregivers highlighted what they viewed as meaningful benefits of their child having SCD. One caregiver believed that her children were able to be more cognizant of themselves in relation to their world, and emphasized this as a benefit derived from SCD, stating: “I think in general most of them have a bigger sense of the world. They just understand a little bit more than most kids as far as their perception of life or whatever. I think that’s kind of a strength.”

Positive outlook helps caregivers, their children, and the SCD community

Caregivers talked about the importance of a positive outlook, often while shouldering additional stressors in their life such as financial difficulties or maintaining employment. Caregivers stated their intent to minimize their negative attitude about SCD because they viewed this as detrimental to their child. Caregivers voiced their aspiration to model a “just try to stay positive…” attitude for their child so their child would internalize it:

You have to have a positive attitude. If you sit there and you feel sorry for yourself, or you just mope around, you’re breaking your own self down, and you’re the main support for that child with sickle cell. When they see you so broken, they’re gonna be broken, so I have to keep it going for him.

Other caregivers talked about drawing strength and inspiration from their child’s positive attitude: “When you’re around her you just can’t continue really having a bad day ‘cause she’s smiling … No matter what she’s going through. And you just think, okay, if she can still manage to smile with all that she has going on, so can I.” Caregivers also noted that sharing their positive outlook and stories with others could be a way to provide encouragement and hope to other families coping with SCD: “… we stay positive … I like to strengthen people and comfort people who may be going through the same thing... Sometimes you got to have a positive outlook and I have no problem with sharing my story.”

Coping with SCD seen as transformative

Some caregivers noted a transformation over time in their view of SCD as a manageable challenge, as they became more familiar and experienced with the illness: “It’s still emotionally draining, but as the years go on you learn to just cope with it. But when I was younger and we were finding out, it was just a wreck because everything was just so new …” Additionally, some caregivers noted that their experience with SCD had led to their desire to give back to the SCD community through involvement in research, community service, and spreading awareness of SCD: “I just hope that my (contributions to this research study) help other families to be able to cope with the condition of sickle cell.” Another caregiver noted, “I chose to (participate in the research) … any time that I can help someone in this situation, I’m all for it … I’m trying to find places to volunteer … this is my platform now…”

Organizational Patterns

Flexibility, stability, and guidance important to management of SCD

Caregivers described the importance of flexibility in adapting their family to SCD, including the unpredictable and often time-intensive nature of the illness. Finding the balance between caring for the child with SCD during a crisis and maintaining other important responsibilities was noted: “So it kind of pulls us between, okay, who goes this time, or what do we do now? … there have been times when I thought I was going to lose my job.” Some primary caregivers who lived in separate households described how they worked together to ensure the child’s needs are met: “So we don’t live together, but we share pretty much all of his care daily. We sort of take turns with appointments and different things, you know?” Another caregiver described how her other children often step up to help out: “My older kids help out when they need to, with babysitting or whatever …“

Caregivers voiced their desire to provide stable experiences for their children in valued activities such as school and extracurricular activities: “… it’s been a point of contention with family because they’re like … she’s been in the hospital for four days, and she has to stay home for another four. And I’m like, no … Get back on the saddle and keep going.” Caregivers also talked about the benefits of activity engagement in promoting overall quality of life: “… just being able to have a good quality of life…I travel a lot with her … keep her involved in all the different sports … making sure she has as normal a childhood as she possibly can.”

Other caregivers, some of whom had SCD themselves, stressed their roles in nurturing and guiding their child through managing their illness, describing themselves as mentors and teachers: “My goal is to be a great caregiver, teach them what they need to know and how to face life as an adult, and what they need to know to … be a better person to achieve things in their life.” Caregivers also described how they are preparing their older children to gradually assume more medical independence: “We’ve been working on his medicines for a couple years now, getting him to take control of that as he’s getting older.”

Connectedness with family and SCD community helps with coping

Caregivers discussed how critical it was to work as a team with family members, including their child with SCD, immediate family, extended family, and community to cope with SCD. Caregivers emphasized how important the family bond was: “Just having that bond … for us that’s really big, you know as far as trying to stay together with one another …” Other caregivers talked about how family activities increased their connectedness: “… what’s important to us is just family being together … enjoying each other ‘cause life is too short, so we all get to learn (from) each other every day … We do family activities … we all come together…” Another caregiver talked about how SCD had the positive benefit of bringing the family closer together: “With family, the impact, it [SCD] brings us together … it just seems if something happens with her … my immediate family calls … seems like extended family … they tend to call more…“ Other caregivers described how helpful it was to seek connectedness outside their families, including online where there was easily accessible support: “… I know I would never get the type of support that I have anywhere else other than online … to be able to ask questions and rally support … it gives you strength to keep moving… “

Mobilizing social and economic resources critical for this high-risk population

Caregivers cited social support as integral to coping with their child’s illness. For some, this support was tangible in the form of family and friends attending medical appointments, transporting family members to and from the hospital, or providing care for siblings. One caregiver identified how extended family members were often willing to put aside their own needs to help them out: “… sometimes they got to put a halt to what they’re doing, because they have to drop everything they’re doing to help us out. And at the end of the day, it’s their grandchild, it’s their niece.” Caregivers also noted that support from others in taking care of their child allowed them necessary time to take care of themselves: “I mean as long as you got some support and somebody’s there for you to give you a helping hand, to maybe stay a while … so you can get your rest or just get away for a while.” Moreover, several caregivers explained that their faith-based communities provided an invaluable source of social support and were a part of the family: “We’re a family in itself with the church anyway, they are a big part of our lives … I think most of my friends are my church family … It’s kind of a support group.”

Caregivers expressed appreciation for the hospital SCD team providing them with support in the form of medical information, resources, and psychosocial support. “[Hospital name] has been a big resource for us … The Child Life team is awesome and they talked to him … the doctors are always supportive.” Caregivers noted the critical role social workers play in helping families access resources: “So social workers, yeah, they’re lifesavers. You tell them a thousand things and you just get it all.” Some caregivers emphasized how critical the support from the SCD team was because of the limited SCD resources available to them elsewhere.

The importance of proactively seeking information about SCD, including recent developments in research and treatment as well as available resources, was emphasized. One caregiver stressed why it was so critical to have SCD-related information: “If you don’t have information about it, you don’t know how to tackle it, you don’t know how to deal with it.” Caregivers demonstrated resourcefulness as they described various avenues through which they obtain information including from the SCD team, online resources, and talking with others who have had experience coping with SCD: “I have a niece … who has sickle cell… So my older sister has been supportive with advice … she’s been really, really helpful. What kind of things to look out for, and just her experience with my niece.”

Communication and Problem-Solving

Clarity and consistency of information sharing optimizes care

Caregivers described that they needed to share SCD management strategies clearly with other caregivers who might not be aware of SCD, to ensure optimal care: “… we have to make sure that everyone is aware that he has sickle cell, and that when he’s with them … he’s hydrated and that he rests and that they know what to do if he has pain …” Caregivers also noted that it was important to maintain clear communication with caregivers in different households to ensure consistency in care: “… making sure that her dad and I, we have that relationship where we can talk to each other and get along for her and make sure her care plan … making sure everything is, everybody is on one page.” Other caregivers indicated that regular communication with other family members was helpful for keeping track of medical information and questions. One caregiver discussed how she called key members of her social network to provide updates after each medical visit, to help her feel more prepared for the next visit:

Every time I leave an appointment … I always call a couple of different people so … they know what’s going on … so that way if I have a question or they can think of questions for me, the next time I see the doctor they can help me. ‘Cause sometimes I don’t always think of stuff to say.

Several caregivers talked about how their child did not know much about SCD, and that they increasingly felt it was their responsibility to engage their child in discussions about SCD as their child took on a more pro-active role in managing the illness. “… I think it was last year that I actually had to tell him what his journey has been and I think it gave him a better understanding of why I act the way I act sometimes.”

Open emotional expression normalizes experience

Several caregivers described having negative feelings associated with SCD, such as anxiety, sadness, and loneliness, and that sharing thoughts and emotions with others in their families and faith communities was helpful:

… I can always call my mom, or my grand-mom, or somebody like that and just vent to them about how I feel … if you don’t have nobody to talk to … it may give you depression … for me, being able to reach out to people, whether it’s her doctor, grandparents, father, whoever, I think that’s very, very important.

Other caregivers talked about how their religious community was often an outlet for expressing their thoughts and feelings about SCD. One caregiver stated, “… I will have to say, my church family … it’s really a family environment, we talk about this [SCD] so much.” Another caregiver noted, “…And we have a pastor … that constantly, you know, calls my wife. They pray. They talk together … (a) spiritual bond …”

Caregivers also brought up their children as being a source of respite during difficult times: “You’re going through it because you don’t want to see your kids in pain or in any discomfort whatsoever. But when you come home from your tired day of work and here is a child making you feel good about the day, you completely forget.”

Finally, caregivers also talked about how communicating their anxieties about SCD to the medical team was helpful because they were often reassured by the team: “I will reach out to the doctors and question them about different things that I might have fears of … ‘cause they know I’m a little overly worried… some of the doctors are like, it’s really okay, you’re reading too much stuff…”

Collaborative and proactive problem-solving increases caregiver confidence

Caregivers often found it helpful to be proactive when dealing with the unpredictable nature of SCD. They emphasized actions to prevent SCD complications such as hydration, minimizing extreme temperature exposure, and using medications: “Just dealing with her sickle cell. Not knowing when she can have a crisis … making sure she’s getting the proper nutrition, and make sure she’s staying fully hydrated, stuff like that.” Other caregivers also talked about the importance of taking steps to prepare for possible emergent situations: “Again, the uncertainty. There are days we’ve left out of the house … and had plans to come home that evening, and didn’t come home for three weeks … We always have the contingency plan … ”

Caregivers also described how they needed to work with their child with SCD when facing health challenges. One caregiver talked about how her son was helpful in determining when it was time to go to the hospital: “He’s good at that, ‘cause since he was a baby since he started talking, when he doesn’t feel well, [Name Omitted] always tells us when it’s time to come to the hospital.” Caregivers also talked about how they work jointly with their SCD team and school staff: One caregiver described an effective working relationship with her child’s SCD provider: “I do get good support from his nurse practitioner, because if I do have questions and my concerns and we do work together very well.” Another caregiver talked about how proactive and collaborative work with school staff is essential to academic success: “I’ve done a lot of pre-work with the school … met with the nurse. Met with the school counselor. We actually just picked up … her sickle cell action plan … to sit down and go over all of her medical docs…working with them over the next month or so to develop her 504 Plan.”

Discussion

Research in pediatric SCD has often focused more on examining child and caregiver risk factors for poor adaptation than on more strength-based family resiliency factors.¹⁰ The aim of this study was to examine the perspectives of caregivers of youth with SCD regarding family resilience in the context of a chronic illness associated with heightened socio-ecological risk factors. This may inform the continuing development of assessment, intervention, and policy strategies to improve health outcomes and reduce health disparities. Caregivers revealed a multitude of ways in which their families are resilient in the face of significant medical and psychosocial adversity. The themes that emerged from the data aligned well with both the Park meaning-making model and Walsh’s Family Resilience framework.

Families’ belief systems were an integral part of their resiliency. Aligning with Park’s meaning-making model, caregivers talked about how their acceptance of SCD was often tied to their religious and spiritual value system and helped them contextualize their distress. This is consistent with previous research on coping in pediatric SCD showing how caregivers and youth promote acceptance of SCD and often value religious and spiritual coping.^32,33 Caregivers also demonstrated a remarkably positive outlook despite their burdens, and emphasized how important it was to model this for their children and use it to strengthen others coping with SCD. Giving back to the SCD community provided caregivers with a greater sense of purpose in their lives, while caregivers also noted that having the experience of living with SCD had provided their children with the benefit of a wider view of their world.

The variety of ways families organized themselves to adapt to the unpredictable challenges of SCD was evident. They reflected on the importance of flexibility in various caregiving tasks and how this helped caregivers manage multiple responsibilities. Caregivers also emphasized the importance of maintaining their children’s participation in valued activities in order to promote functioning and quality of life. The role of the caregiver who, sometimes from personal experience, can teach and guide children to manage SCD and increase autonomy over time was also valued. Caregivers voiced appreciation for how their family’s connectedness helped them cope with SCD, and how a benefit of SCD was that it seemed to bring family members closer together. Mobilizing social and economic resources was a key process in helping these high-risk families cope with SCD and psychosocial stress. There was a diversity of social supports through immediate and extended family, friends, church communities, the hospital SCD team, other caregivers of children with SCD, and the online community. Seeking information about SCD from multiple sources was identified by many caregivers as very important, to better equip themselves to manage the illness. Overall, these findings are consistent with previous studies highlighting the cultural resiliency factors in the African-American community that may buffer against psychosocial stress, including extended family and community networks.^34–36 Findings are also in line with previous studies in pediatric SCD showing that caregivers value maintaining functional activities and fostering their child’s autonomy³³ as well as social support ^25,37. Findings are also consistent with a study reporting strengthened relationships within the family, extended family, and community as a result of the SCD experience.³⁸

The clarity and consistency of communication across multiple caregivers was deemed important for the child’s medical care. Sharing the burden of processing medical information across family members and the SCD team was noted to be helpful, as was including children in the communication about symptoms and treatment. Caregivers also talked about the importance of opening up to others about emotional stress, and identified various outlets for this including family members, the SCD team, and their religious community. Studies examining communication in families of children with SCD have found that better family communication is associated with better child^39,40 and sibling adjustment.⁴¹ Another study highlighted how emotional expression was a way caregivers assisted their children in coping with SCD.³³ Given the unpredictability of SCD, caregivers emphasized how critical it was to be proactive in working with their children and the SCD team to prevent complications and to prepare the family for crisis situations. Collaborating with school staff on educational needs and medical supports was also deemed essential. Previous research points to how parental problem-solving abilities moderate the relationship between SCD complications and child quality of life,⁴² and how higher family competence (including problem-solving) is associated with better adjustment for adolescents with SCD.⁴³

There are several study limitations to note. This study involved a secondary data analysis. A study designed primarily to gather perspectives on resiliency may have resulted in more nuanced themes. Additionally, the participants in this study were primary caregivers of children with SCD, and therefore the perspectives of other stakeholders such as youth with SCD and their healthcare providers, were not directly gathered. A majority of participants were female, as children were most often accompanied to clinic visits by a female caregiver and attempts to contact and recruit male primary caregivers were often unsuccessful. Lastly, although there was a wider age range of caregivers in the interview group compared to the PAT-only group, this may have promoted more diverse responses and increased the generalizability of the qualitative data.

The current study findings highlight the multitude of resilience factors in families of youth with SCD and suggest that focusing on the strengths of families and their wider social ecology during screening and clinical assessment can inform the development of interventions to promote health outcomes. Many of the themes identified by caregivers in this study reflected resiliency factors that previous research has shown to be particularly salient for Black families, including family, extended kin, and religious community networks. This reinforces and aligns with the increasing focus on pediatric psychology research that examines cultural resiliency factors when addressing health disparities and promoting well-being.⁴⁴ In terms of future research directions, there is a need for further studies to gather the perspectives of other SCD stakeholders on family resilience, including patients with SCD and their other caregivers including partners and extended family members, healthcare providers, and leaders in the SCD community. Future studies should also examine how family resiliency factors may be linked to specific health outcomes in youth with SCD as well as adjustment outcomes for caregivers and siblings. The long-term goal is to further our understanding of family resilience in the context of pediatric SCD to inform the development of strategies to promote enhanced health outcomes, reduce health disparities, and advocate for appropriate services and health policies.