Exploring the experience of family caregivers of children with medical complexity during COVID-19: a qualitative study

Abstract

Background and objectives

Children with medical complexity have been disproportionately impacted by the COVID-19 pandemic and the associated changes in healthcare delivery. The primary objective of this study was to gain a thorough understanding of the lived experiences of family caregivers of children with medical complexity during the pandemic.

Methods

We conducted semi-structured interviews with family caregivers of children with medical complexity from a tertiary pediatric hospital. Interview questions focused on the aspects of caregiving for children with medical complexity, impact on caregiver mental and physical well-being, changes to daily life secondary to the pandemic, and experiences receiving care in the healthcare system. Interviews were conducted until thematic saturation was achieved. Interviews were audio recorded, deidentified, transcribed verbatim, coded and analyzed using content analysis.

Results

Twelve semi-structured interviews were conducted. The interviews revealed three major themes and several associated subthemes: (1) experiences with the healthcare system amid the pandemic (lack of access to healthcare services and increased hospital restrictions, negative clinical interactions and communication breakdowns, virtual care use); (2) common challenges during the pandemic (financial strain, balancing multiple roles, inadequate homecare nursing); and (3) the pandemic’s impact on family caregiver well-being (mental toll, physical toll).

Conclusions

Family caregivers of children with medical complexity experienced mental and physical burden due to the intense nature of their caregiving responsibilities that were exacerbated during the pandemic. Our results highlight key priorities for the development of effective interventions to support family caregivers and their children.

Introduction

Raising children amid a pandemic is challenging for all caregivers but may be particularly difficult for those caring for children with medical complexity (CMC). These children have multiple chronic conditions, significant functional limitations, and dependence on technology [1, 2]. While CMC comprise 1% of all children, the size of this population is rising due to advances in medical care [3, 4]. CMC use the healthcare system frequently and intensely. However, a significant proportion of care for them is provided in the home by family caregivers (FCs) [3, 5].

A study by Verma et al. [6] revealed that the prevalence of psychosocial stress in FCs of CMC is amongst the highest of all studied pediatric populations. Due to the complexity of their care needs, CMC were likely disproportionately impacted by the COVID-19 pandemic and associated changes in healthcare. CMC experienced decreased access to allied health services and medical specialists, with the long-term impacts unknown [7]. There were also disruptions to the delivery of homecare nursing, a long-standing challenge already faced by FCs [8, 9]. Further, there was a significant shift to virtual care to mitigate virus exposure [10]. There is a critical need to understand how pandemic-related changes have impacted the caregiver burden of CMC from the perspective of FCs [11, 12].

To our knowledge, the impact of the pandemic on FCs of CMC has not yet been explored qualitatively and this could provide important insight into their lived experiences. Our primary study objective was to gain an improved understanding of the caregiving experience for CMC during the pandemic. We also aimed to provide relevant stakeholders with recommendations from FCs on how to best support their ability to care for their children and family.

Methods

Study design

We conducted qualitative interviews with FCs of CMC between November 2021 and January 2022. Institutional research ethics approval (ethics #1000057112) was obtained from the Hospital for Sick Children (SickKids). Participants were purposively selected from a cohort of 91 FCs who completed the Psychosocial Assessment Tool (PAT) as a part of another study (Ethics #1000057112). The PAT is a validated, short self-reported screening tool used to assess psychosocial risk in caregivers of pediatric patients [13]. The total PAT score assigns FCs to one of three levels of psychosocial risk: low-risk ‘Universal’ families with normal transient levels of stress (total score < 1.0), intermediate-risk ‘Targeted’ families with acute or elevated levels of stress (total score between 1.0 and 1.9) and high-risk ‘Clinical’ families with severe stress (total score ≥ 2.0) [14]. The inclusion criteria were: (1) FC of a child less than 18 years with medical complexity defined as having complex chronic conditions and/or neurologic impairment requiring specialized care, substantial healthcare needs, functional limitations and high healthcare resource utilization [1]; (2) followed in the SickKids Long-Term Ventilation clinic (3) scored in the ‘Targeted’ or ‘Clinical’ risk category. We intentionally recruited participants from these two categories to explore the impact of the pandemic on the experiences of FCs who are at highest risk of psychosocial stress. Purposive sampling of FCs was used to ensure representation of CMC at various ages, diagnoses, healthcare needs, caregiver experiences and PAT scores. Eligible families were identified and introduced to the study by a clinical social worker who previously completed their social work assessments. Written informed consent was obtained by a research coordinator prior to initiation of the interview.

Data collection

Data collection included online demographic surveys and single semi-structured interviews. The interview guide was developed by the research team following a review of the relevant literature and consultation with content experts. All interviews were conducted in English. After the first three interviews, transcripts were reviewed by members of the research team. Revisions were made to the interview guide to improve clarity and additional questions were added based on the content (see Additional file 1, for the interview guide). Interviews were 40 to 90 min long and conducted virtually using a video conferencing platform (Zoom Video Communications, San Jose, California) by a female social worker with formal training in qualitative research (LD). Participants were given a nominal gift card as a token of appreciation. Transcripts were not returned to participants; however, they were provided a description of the coding framework. The Consolidated Criteria for Reporting Qualitative Research checklist was used to guide the study methods and reporting (see Additional file 2) [15].

Data analysis

Interviews were audio-recorded, deidentified and transcribed verbatim. Data analysis software (NVivo version 12 [QSR]) was used for data management and coding. Four-step content analysis was conducted to identify, code, and categorize predominant themes from the text. After an immersive reading of the transcripts by 4 study investigators (NP, MA, LD and RA), initial patterns and recurring categories were identified [16]. Next, similarities and differences between participant accounts were identified. Finally, codes were created by 3 study investigators (NP, MA, LD). A codebook was created and iteratively modified by 4 study investigators (NP, MA, LD and RA). Methodologic rigor was established through prolonged engagement and peer debriefing. After 12 interviews, recruitment was considered closed because the authors agreed that data saturation was achieved, defined as the point when additional data did not lead to the emergence of new themes [17].

Results

Study sample

Sixty FCs met the inclusion criteria for participation. The social worker contacted 23 FCs via phone or e-mail for consent following the completion of their social work assessments. Overall, 4 (17%) were unable to be reached, 4 (17%) declined participation; thus 15 (65%) FCs agreed to participate. Of the 15 consented participants, 12 completed the interviews. The remaining three had ultimately not committed to an interview time before data saturation was reached. See Table 1 for FC and child demographics.

Table 1 Demographic information of family caregivers and their children

The overarching themes in our study were organized as follows: (1) experiences with the healthcare system amid the pandemic; (2) common challenges during the pandemic; and (3) the pandemic’s impact on FC well-being.

Experiences with the healthcare system amid the pandemic

Lack of access to healthcare services and increased hospital restrictions

FCs depend on several community and health services such as speech language pathology, occupational therapy, and physiotherapy to meet the needs of their children. However, FCs noted a lack of access to these services as a direct result of the pandemic. These services were either not available or FCs did not want to put their children at increased exposure to the virus. Several FCs consider these services critical to their children and worry that lack of participation in these activities will hinder their development.

Many FCs also described how the implementation of visitation policies only allowing one parent in the hospital at a time during the pandemic made attending hospital appointments extremely difficult. While FCs recognized that precautions are necessary, they believe these policies did not consider the needs of CMC. FCs detailed how attending hospital appointments is more than a one-person job as it involves traveling with the appropriate equipment and facilitating transfers, all while attending to their child’s regular care needs. The need to fight for more supports during hospital appointments made an already challenging situation even more stressful during the pandemic.

Negative clinical interactions and communication breakdowns

Many participants described having negative interactions with healthcare providers both in the hospital and in primary care settings. During the pandemic, FCs recalled experiences with healthcare providers who demonstrated insensitivity toward their children. FCs felt these healthcare providers did not make appropriate efforts to develop a connection with their child or adapt their approach in healthcare appointments to accommodate their child’s specific needs (e.g., attending to non-verbal cues in children who are non-verbal). Some FCs felt physicians had a condescending attitude and did not acknowledge their expertise in their child’s care. One FC related an experience in which a nurse did not acknowledge her child and inserted a rectal thermometer without warning, causing the child immense discomfort.

Further, several FCs discussed the challenges of communication with healthcare providers during the pandemic. One FC noted having significant difficulty connecting with her pediatrician, making multiple attempts to get in touch with no response for a long period of time. Another FC recounted feeling let down by her healthcare team when her son’s surgery was delayed due to the pandemic, and she did not receive adequate communication about the ongoing management plan.

Virtual care use

Several FCs reported the benefits of virtual healthcare use implemented during the pandemic. They appreciated being able to attend medical appointments through virtual teleconferencing platforms, eliminating the burden of physically going into hospital. This was especially highlighted by FCs who lived far from the hospital. Some FCs with children dependent on respiratory technology highlighted the value of a health app that provided them direct access to healthcare providers. They were able to share data from their child’s technology with their healthcare team and ask questions that could be immediately addressed through the app. This provided FCs with a sense of connectedness to their healthcare team, despite feeling isolated during the pandemic.

Pandemic’s impact on FC well-being

Physical toll

FCs received less or no nursing support due to the pandemic, adding significantly to their workload. Fulfilling the chronic and intense care demands of CMC was described as physically exhausting. Caregivers provide highly specialized care including medication administration, tube feeding, tracheostomy support, technology management and emergency response. The examples shown in Table 2 of a typical day for a FC highlights the rigorous nature of this care. The demands continue throughout the night, resulting in many FCs experiencing sleep deprivation, especially when nursing support is not present. Moreover, caregivers described the physical challenges associated with transferring their children who are physically impaired from their disease. The cumulative effect of repeated lifting and transfers takes a physical toll on FCs, especially as their children develop. One FC highlighted how the pandemic worsened the physical demands of attending hospital appointments, as the one-visitor policy prevented her from having support with transfers during her visit.

Table 2 Themes and subthemes with illustrative quotes

Mental toll

Participants emphasized the mental toll that results from supporting their children on a 24/7 basis. Ensuring these intense care demands are constantly met in a timely manner was described as stressful and mentally taxing. FCs undergo chronic stress as CMC can experience life-threatening situations requiring high-stake decisions. One FC described being in constant fight or flight mode, with no opportunity to nurture her own mental health. Many FCs expressed guilt for not doing enough, making poor decisions, or needing extra support. One highlighted the mental toll of witnessing her child deteriorate without having time to process her emotions or grieve.

This underlying mental exhaustion was exacerbated by the pandemic. FCs described being in constant fear of their child or family contracting COVID-19, especially knowing that their child is particularly vulnerable to infections. Some FCs hesitated to bring their child to the hospital in emergency situations. Several FCs had difficulty accessing medications or supplies, causing significant stress. Many FCs implemented strict social distancing measures by limiting outings and visitors (friends and family) in the home. This lack of visitor support left them feeling isolated and exhausted from taking on more demands. Some noted that every day felt the same without the ability to engage in fun activities or self-care. Many FCs described feeling trapped inside their homes, with no separation between their work and home environment. Interestingly, a subset of FCs expressed that the circumstances brought on by the pandemic were similar to what they already experienced due to their child’s chronic illness.

Common challenges during the pandemic

Financial strain

The financial burden of caring for CMC was worsened for FCs who lost work because of the pandemic, resulting in less income. FCs emphasized the significant costs of caring for CMC due to the need for specialized medical supplies and equipment, therapies, prescriptions, and nursing. FCs acknowledged some benefits of universal health coverage; however, they are still obligated to pay an extraordinary amount of out-of-pocket fees and many components of care do not have coverage. Even if certain purchases are reimbursable, FCs must pay large sums of money upfront and wait months for reimbursement. Some FCs have had to leave full-time jobs to manage care demands, rendering their families one-income households. The burden of administrative work associated with finances included completing paperwork, tracking purchases, filing receipts, applying for funding, and seeking claim reimbursement. Some FCs noted that being in a higher income bracket put them at a disadvantage. The government does not provide these families with as much support; however, the government does not account for their expenses, leaving them without adequate financial assistance.

Balancing multiple roles

At baseline, FCs described the need to balance several roles. FCs perform specialized medical tasks including administering medications, managing medical technology, facilitating feeds, and responding to emergencies. They also coordinate their child’s care, which involves organizing appointments, communicating between specialists, hiring and scheduling nurses, and ordering equipment. Prior to the pandemic, FCs leveraged the support of extended family and homecare nursing to help manage these intense care demands. However, during the pandemic FCs noted having decreased access to homecare nursing and limited help from family to mitigate exposure. Thus, the difficulty in balancing multiple roles was intensified following the pandemic, needing to fulfill all their responsibilities with overall less support.

FCs also highlighted the need to act as advocates for their children on an individual and systemic level. The need to be advocates was also intensified by the pandemic. One FC felt distressed from having to fight for her son’s surgery that kept being cancelled due to the pandemic. Despite the ongoing advocacy efforts of FCs, some feel frustrated that their voices are not heard, with little progress being made. With the amount of time dedicated to caring for their sick children, FCs noted difficulty in fulfilling their obligations as a parent to their other children. Some expressed worry that their other children often feel excluded or that their own needs are not being met. FCs who were extremely cautious during the pandemic to protect their medically fragile child felt guilty for preventing their other children from seeing friends.

Inadequate homecare nursing

FCs experience challenges obtaining stable homecare nursing, and this was exacerbated by the pandemic. There was significant nurse turnover, resulting in a lack of care continuity that created distress for their children. Additionally, FCs spent a significant amount of time scheduling nurses and finding fill-ins for frequent cancellations. The necessity to use new nurses was even more distressing during the pandemic as FCs wanted to mitigate potential COVID-19 exposures. As a temporary solution to the nursing shortage, FCs accepted support from nurses who lacked the appropriate training. Consequently, some FCs reported not being able to truly disengage from their caregiving role even with nurses present. One FC emphasized the lack of an official body to hold nurses accountable, making him feel powerless to improve the homecare nursing situation.

Top FC recommendations

FCs were asked what their top recommendations would be to best support families in caring for CMC during the pandemic and in general. The recommendations were as follows:

1.	Increased access to reliable homecare nurses with appropriate training specific to CMC and managing medical technology
2.	More robust psychosocial support offered to caregivers and children, especially in preparation for and following discharge from hospital
3.	Increased financial coverage or funding for medication and medical equipment
4.	Improved experience of in-hospital appointments and admissions by better accounting for the needs CMC and their family
5.	Promotion of virtual healthcare to improve barriers to care related to distance and time
6.	Opportunities for caregivers of CMC to connect with each other and share experiences
7.	Improved training and educational resources for caregivers whose children require medical technology
8.	Increased support during the transition between hospital and home
9.	Always allow more than one caregiver to accompany CMC during hospital visits or admissions

Discussion

This is the first qualitative study to our knowledge to investigate the impact of the COVID-19 pandemic and associated changes in healthcare on FCs of CMC. The results highlight key challenges faced by this population that were already well recognized, with the pandemic now exacerbating them further. Additionally, as the world recovers from the pandemic, these families are now being left in an even more vulnerable position. We provide relevant stakeholders with recommendations not about preparing for a future pandemic response but rather for systemic changes needed now. The pandemic experience has elucidated the health system limitations for CMC and their family caregivers.

Our study highlighted the lack of access to reliable homecare nursing during the pandemic. Homecare nurses are critical to the care of CMC, allowing necessary respite for FCs to take breaks, sleep and maintain some semblance of work-life balance [18, 19]. Even before the pandemic, families faced many barriers in accessing trained homecare nurses [9, 20,21,22]. Previous studies have documented an association between less support from night nurses and adverse outcomes, including sleep deprivation and symptoms of depression [23, 24]. Our study highlights the profound impact a lack of stable homecare nursing has on FC overall well-being. It is thus not surprising that the most common recommendation from our participants was to improve the overall reliability and accessibility of homecare nursing. One solution might be to encourage the use of unregulated respite care, which has been shown to offer unique advantages in this population [25]. Strategies to achieve this on a more systematic level could include better integrating homecare into nursing education and decreasing the pay disparity between homecare and medical facilities. While this may seem like an expensive approach, these long-term solutions may mitigate the need for acute care services ultimately more costly to our system [26].

The financial burden of caring for CMC is significant, with almost 70% of parents of CMC reporting financial hardship [27]. Although our study was conducted in the context of a publicly funded healthcare system, our study highlights a critical gap for FCs of CMC. Due to the enormous costs associated with caring for CMC, even families earning middle-class incomes face significant financial hardship. Healthcare providers should advocate on behalf of their patients for candidacy for medical coverage to be considered in the context of the significant costs for medications and nutrition, technology supplies, nursing services and equipment required to meet the needs of CMC. Further, processes to obtain funding and reimbursements should be streamlined to mitigate the burden placed on FCs.

CMC spend a significant amount of time in the healthcare environment given their need for intense monitoring and frequent health crises requiring emergency care or hospital admissions [3]. In line with our findings, previous studies have reported the frustration felt by parents when medical providers do not recognize their expertise in their child’s care [28, 29]. Our study adds to this literature in that FCs reported dissatisfaction with how physicians acted towards their children. Evidently, there is a critical need for physicians to adapt their approach to patient care to meet the specific needs of CMC to strengthen their relationship with the child and, in turn, with their family. Parents of CMC appreciate when healthcare staff prioritize getting to know their child and family well [28]. The partnership between healthcare staff and FC is a key component of family-centered care, an approach that optimizes the delivery of care for CMC [29,30,31].

A component of care for CMC emphasized as a stressor by our sample was a lack of support during hospital experiences, highlighting the need to optimize conditions during hospital visits and admissions. A study by Diskin et al. [32] described how changes in hospital measures implemented during COVID-19 impacted the delivery of healthcare in a pediatric inpatient unit. Visitor restrictions resulted in family separation and lack of support, which was challenging for families during high-stress periods. In another qualitative study examining  the implications of pandemic safety measures, parents of seriously ill children noted feeling more isolated and burnt-out during hospital admissions and clinic visits due to visitor restrictions in medical facilities [33]. In keeping with these findings, several FCs in our study highlighted the difficulties in attending in-hospital appointments as a sole caregiver and recommended allowing more than one caregiver to accompany CMC in hospital at all times.

Despite the barriers created by COVID-19, the use of virtual technology to meet care requirements while maintaining social distancing restrictions was beneficial for our cohort. This finding aligns with other studies demonstrating the value of virtual care and telemedicine in the care of CMC and other paediatric populations [10, 33, 34]. The use of virtual healthcare can mitigate geographical barriers and financial costs associated with in-person visits such as parking fees and gas expenses. Further, eliminating the need for CMC to be in the hospital environment mitigates their risk of acquiring illnesses.

Our study highlighted the immense physical and mental exhaustion endured by FCs raising CMC during the pandemic. Worsening mental health outcomes in FCs of other pediatric populations during the pandemic have also been reported [35,36,37,38,39]. Consistent with research conducted before the pandemic, FCs in our study reported sleep deprivation, mental health challenges, physical exhaustion, and burnout [23, 40, 41]. Clearly, FCs of CMC experienced a unique burden during the pandemic that has not been adequately addressed by the healthcare system. Edelstein et al. [42] outlined promising interventions to reduce stress in FCs of CMC, including care coordination models, respite care, peer support groups, telemedicine, and other health-related supports. The authors suggested that relevant stakeholders should consider combining interventions at the individual and health-systems level to ensure the unique needs of CMC and their FCs are met. In the current landscape of the pandemic where demands placed on caregivers are intensified, further development and implementation of interventions to address issues created by the pandemic is critical to supporting FCs of CMC.

There were some notable limitations to this study. Firstly, our FC sample was recruited from a single tertiary institution, meaning our results may not generalize to FCs of CMC internationally. However, the findings of our cohort do seem to resonate with the published literature for FCs of CMC. Secondly, we only included FCs with intermediate or high levels of psychosocial risk but not low-risk FCs. We intentionally recruited participants from these two categories to explore the impact of the pandemic on the experiences of FCs who are at highest risk of psychosocial stress. Thirdly, our sample was comprised predominantly of English-speaking female participants from middle to high-income households. While our sampling strategy was intended to capture CMC with various demographic and clinical factors, our results may not reflect the diversity of FCs serviced by SickKids’s long-term ventilation program. Finally, we used a question directly from the PAT to characterize the financial difficulties of our study cohort: 1) no problems, 2) some problems, and 3) many problems. However, the use of this tool during the pandemic has not been validated, and thus, it is difficult to interpret the meaning of these responses.

Conclusions

Our findings indicate that the pandemic intensified challenges already faced by FCs of CMC, increasing overall burden. Further, healthcare measures implemented to mitigate the spread of COVID-19 significantly impacted the way in which CMC received care. FCs provided important recommendations including more accessible homecare nursing, enhanced psychosocial services, and increased financial support. Healthcare policy makers and government stakeholders should consider these meaningful insights when developing interventions targeted toward supporting this medically fragile population and their FCs.