Parent Experiences During Child Hospitalization in an International Cohort: A Qualitative Descriptive Study Guided by Family-Centered Care Principles and the Socio-Ecological Model

Abstract

A child’s hospitalization can be a major crisis for parents, and is influenced by individual, interpersonal, organizational, community, and societal factors. This study aimed to characterize the experiences of a large international cohort of parents of hospitalized children. Within a longitudinal 14-country study, parents ≥ 18 years staying at a nearby Ronald McDonald House® during their child’s hospitalization completed surveys about their family’s socio-demographics and hospital experience. Free-text comments were analyzed using qualitative methods, guided by family-centered care (FCC) principles and the socio-ecological model (SEM). Results were based on 2,510 of 3,350 (75%) participants who provided comments. Parents described needs and gaps in services across all dimensions of the SEM. Parents also described their sources of strength, valued services, and recommendations for support during pediatric hospitalization across FCC and SEM dimensions. In conclusion, this analysis of parents’ experiences revealed common challenges faced by families of hospitalized children globally and can guide policies and practices to innovate and scale hospital, community, and societal services to reduce the burden of pediatric hospitalization on parents, families, and communities.

Introduction

The hospitalization of a child of any age can be a profoundly distressing experience for parents. Mental health outcomes for parents of hospitalized children are worse than those of the general population, with symptoms of anxiety at rates twice as high and depression at rates three times as high.^1-3 The adverse psychological effects, including anxiety, depression, and post-traumatic stress disorder (PTSD), can last for years after a child’s hospitalization.^4-7 Research on parental and family experiences of hospitalized children spans decades. Systematic reviews, meta-analyses, and metasyntheses highlight the high levels of stress and negative emotions parents often experience, including worry, fear, and hopelessness,^8-12 as well as hope. ¹³ The parent and family experience is strongly influenced by the quality and frequency of communication and trusting relationships with the healthcare team, as well as by hospital policies, education, and support services that encourage involvement in their child’s care and decision-making.^14,15 This research is predominantly from high-income countries and is often conducted within specific diagnostic groups (e.g., oncology, cardiology, preterm birth) or hospital care settings (e.g., pediatric or neonatal intensive care).^10-12 There remains an inadequate understanding of the common experiences, needs, strengths, and supports to inform pediatric hospital practice and policy globally.

Research on parental experiences has historically focused on individual rather than structural factors that shape parent and family experiences and outcomes, although there is a growing literature on the socioeconomic influences on families in some contexts. ¹⁶ The socio-ecologic model (SEM) was developed to understand influences on human development and has guided health behavior and outcomes research for decades. ¹⁷ This well-established model conceptualizes broadening levels of influence on health, including the individual, interpersonal, organizational, community, and societal. ¹⁸

Another prominent model guiding pediatric hospital care is Family-centered care (FCC). FCC is a collaborative approach to health care that is well documented to mitigate the parental trauma and stress of having a child in the hospital. FCC-based interventions have been shown to improve both child and parent outcomes.^19-21 FCC in pediatric hospitals is based on four core principles of respect and dignity, information sharing, parent participation in care, and collaboration. FCC involves parents as core members of the health care team and partners with professional health care providers in their child’s care and decision-making. FCC has been empirically validated and promoted for decades as the global standard for pediatric care.^22,23

Despite well-developed theoretical frameworks guiding the integration, care, and support of parents and families of hospitalized children, there remains a significant gap in understanding the common threads across settings, child health conditions, and healthcare systems. More knowledge is needed to advance the global standards of care and improve experiences for at-risk families of hospitalized children. Therefore, our aim in this study was to provide a comprehensive characterization of the experiences of a large global cohort of parents of hospitalized children, guided by family-centered care (FCC) principles and the socio-ecological model (SEM). We specifically focused our analysis on describing common sources of strength, valued services, and recommendations articulated by parents across SEM levels and FCC principles. Theoretically grounded, holistic analyses, drawn directly from parents’ lived experiences, can yield new insights to inform efforts at the local, regional, and global levels to more effectively support parents during their child’s hospitalization.

Methods

Design

To capture and identify common themes across a broad range of parent perspectives, we analyzed data from a large, global cohort of parents whose children received hospital care. We used a qualitative descriptive design to analyze parents’ written responses to three open-ended survey questions. This design allows for themes and interpretation of findings that remain close to the data, appreciating the diversity of the parent experiences while identifying common patterns. ²⁴

Setting and Sample

This study was part of a larger longitudinal observational study of parents from 14 countries who stayed at one of 34 Ronald McDonald Houses® during their child’s hospital treatment. ¹ Ronald McDonald House is a non-profit organization with Chapters in 62 countries and regions that provide temporary accommodation, meals, peer support, and other services to meet the basic needs of families of children receiving hospital care (https://ronaldmcdonaldhouse.org/). ²⁵ A complete description of the study methods has been previously published. ¹ Briefly, parents completed an approximately 20-minute survey in one of eight preferred languages via email, text message, or paper at study enrollment. Data were collected from March 2023 through March 2024. Eligible participants were parents, including mothers, fathers, or other primary caregivers, aged 18 years or older, who had stayed at a Ronald McDonald House for at least three consecutive nights while their child received hospital care. Only one parent per child was enrolled, and those with repeat stays participated only once. Recruitment materials and surveys were completed by parents in one of seven languages (English, French, Italian, Japanese, Portuguese, Spanish, Tagalog, and Traditional Chinese). Participants received the equivalent of a $20 USD gift card or gift for each completed survey. The study protocol was reviewed by the coordinating university’s Institutional Review Board (22-37577) and deemed exempt because it involved survey procedures and minimal risk to participants.

Survey

The survey was guided by the National Institute of Minority Health and Health Disparities Research Framework. ²⁶ An international study advisory group, comprising parents, subject matter experts, and Ronald McDonald House representatives, provided input throughout the study planning and implementation. A systematic process for language translation was used throughout the study, from survey development to data analysis. ²⁷ Our present analysis focused on the responses to three open-ended questions: 1) what it was like for parents whose child is receiving hospital care, 2) what made it difficult for parents or family members to be with their child at the hospital, and 3) what support services were or would be helpful.

Qualitative Analysis

Participant responses were translated verbatim into English using a professional service. The first stage of qualitative analysis included three authors (authors 1,2,5), who independently applied inductive line-by-line coding to a portion of the transcribed data ²⁸ in Dedoose Software. ²⁹ Discrepancies among codes were discussed by the three authors and determined by consensus until no new codes emerged. Based on the consensus of codes, we developed and implemented a codebook for the thematic analysis. ³⁰ The lead author (author 1) trained three new authors (authors 9, 10, 11) to code the remainder of the data deductively using the codebook. Throughout the coding process, we conducted frequent quality checks and met regularly to discuss progress. A total of 31 specific codes were organized into broad themes related to parents’ experiences, including their needs, strengths, valued services, and recommendations. We organized the resulting themes and subthemes according to the FCC and SEM frameworks.

Results

Of the 3,350 parents who completed the enrollment survey, 2,510 (74.9%) answered at least one open-ended question and were included in this analysis. Of these, 1,029 (40.9%) completed the survey by email, 879 (35.0%) by SMS (text) link, and 602 (24.0%) by paper. There were 1,399 comments about parents’ experiences of having a hospitalized child, 2,121 comments about what made it difficult for parents to be with their child, and 1,726 comments about services that would be helpful to parents.

Participant Characteristics

Table 1 presents the characteristics of parents included in this analysis, comprising 1,933 (77.2%) mothers, 470 (18.8%) fathers, and 100 (4.0%) other primary caregivers. The mean age of parents was 36.7 years (standard deviation = 9.4). A total of 1,074 (42.8%) parents stayed at a Ronald McDonald House in the United States, 834 (33.2%) in Latin America, 347 (13.8%) in Canada, 153 (6.1%) in Asia-Pacific, and 102 (4.1%) in Europe. The number of parents by country is shown in Supplemental Table 1. Parents were predominantly living with a partner (1,869; 74.9%), had a low income (1,061; 51.8%), were not working (1,505; 60.5%), and had public health insurance (1,518; 61.0%). The median age of the hospitalized child was 3.0 years (interquartile range = 0.2, 11.0). The three most common reasons for the child’s hospitalization were cardiology (635; 25.6%), oncology/hematology (600; 24.2%) and neonatal (481; 19.4%). A majority of parents (1455; 58.5%) stayed elsewhere before staying at the Ronald McDonald House. We found statistically significant associations in some parent and child characteristics between parents who were included in this analysis and those who did not respond to the open-ended questions (higher odds for from Asia-Pacific, from Latina America, older parental age, longer distance (>7 hours), lower income, not working, older child age, and neonatal reason for hospitalization; lower odds for oncology/hematology reason for hospitalization; Supplemental Table 2).

Table 1.

Demographic Characteristics (n=2,510)

Characteristics	n (%)
Relationship to hospitalized child
Mother	1,933 (77.2)
Father	470 (18.8)
Other caregiver	100 (4.0)
Gender
Female	2,008 (80.3)
Male	487 (19.5)
Other gender	6 (0.2)
Age, mean (SD)	36.7 (9.4)
Region
Asia-Pacific	153 (6.1)
Europe	102 (4.1)
Latin America	834 (33.2)
North America
Canada	347 (13.8)
United States	1,074 (42.8)
Living situation
Living with a partner	1,869 (74.9)
Not living with a partner	625 (25.1)
Family income 1
Low	1,061 (51.8)
Not low	989 (48.2)
Employment
Working	982 (39.5)
Not working	1,505 (60.5)
Insurance type
Public	1,518 (61.0)
Private	702 (28.2)
None	171 (6.9)
Other	97 (3.9)
Distance from hospital to home
<2 hours	775 (31.3)
2 to 4 hours	921 (37.2)
5 to 7 hours	309 (12.5)
>7 hours	469 (19.0)
Time from check-in at Ronald McDonald House to enrollment survey completion in days, median (IQR)	4.0 (2.0, 9.0)
Length of stay at hospital in days, median (IQR)	19.0 (9.0, 47.0)
Child age in years, median (IQR)	3.0 (0.2, 11.0)
Top 3 reasons for child’s hospital treatment
Cardiology	635 (25.6)
Oncology/Hematology	600 (24.2)
Neonatal	481 (19.4)

¹Low income is approximately at or below the poverty line: Argentina - it is hard to pay for basic needs like food and shelter (yes or partially), Australia < $40,000 AUD annually, Brazil ≤ 1 minimum monthly wage, Canada < $50,000 CAD annually, Colombia < 1,000,000 pesos monthly, Ecuador < $450 USD monthly, France < 30,000 Euros annually, Japan < JPY 2,000,000 annually, Italy ≤ 20,000 Euros annually, Peru ≤ S/1,000 monthly, Portugal < 12,000 Euros annually, Spain < 12,450 Euros annually, Taiwan < NT$800,000 annually, United States < $40,000 USD annually.

Percentages are of non-missing data for each characteristic.

Abbreviations: IQR, interquartile range, SD, standard deviation.

Parent Needs and Gaps in Services Across SEM Levels

Four themes emerged related to parent needs and gaps in services: mental and physical well-being, financial stability, social support, and the importance of being with their children. These themes are described in detail below, in Table 2 and Figure 1A. The themes of mental and physical well-being, financial stability, social support, and being with their children are interconnected across the levels of the SEM, including family dynamics, organizational factors, and the societal healthcare context.

Table 2.

Parents’ Needs and Gaps in Service: Illustrative Quotes ¹

SEM level	Themes and subthemes of parents’ needs and gaps in services
	Mental and physical well-being	Financial stability	Social support	Being with their children
Individual	Overwhelmed with Fear My child’s health condition greatly affected my mood, causing me to become more withdrawn . Looking back, I realize that I was overwhelmed with fear at the time. -Mother, Asia-Pacific Uphill Battle For me as a single father it feels like an uphill battle. As man I can’t access the resources mothers can, I’m told I’m supposed to be the provider, but I can’t work. It feels like entropy, like you’re falling to dust while you’re trying to pull yourself back together. -Father, N.America It’s very difficult , emotionally, physically, psychologically and spiritually. -Mother, Europe Parents’ Mental Health The biggest challenge is the mental health of parents . I need to be very well psychologically to be able to take good care of my son. -Mother, S.America	Loss of Employment What concerns parents about having to go back home is work and financial stability, because after being hospitalized for so long, everything becomes unstable, work, and without work there is no way to provide a good quality of life for the children !! -Mother, Europe Struggle to Pay Bills Finances are one of my biggest concerns at the moment, I have bills I’ll struggle to pay over the coming months. -Father, Asia-Pacific	Individual Isolation I can only speak for myself, but I felt very lonely and isolated . I was away from my home with no family or friends. -Mother, Asia-Pacific I don’t have anyone’s help, I’m alone . -Mother, S.America It is the most isolating time in a parent’s life. -Mother, N.America As parents with a sick child, we tend to isolate ourselves from our close friends in fear of what they’ll say. -Mother, S.America Often the parents are alone … often with no strength…smiling outside…but very sad inside for all the difficulties they experience for their children. -Father, Europe Chronic illness wears out friends of parents and they disappear over the years… “Forever parents” live a very isolated life with few close friends who try to understand. -Mother, N.America	Worried About Being Separated from Other Children When a mom has a son in the hospital but has more children, it is very worrisome to be far from them . Who is worrying about their food? covering their necessities? Because in my case, when you are the head of the household and the one who provides the food, it is difficult to do while you are in the hospital. So, it is a very worrisome situation. -Mother, S.America Divided Between Sick and Healthy Children The hardest thing is being divided between my sick child and my healthy ones . Most of my son’s appointments don’t want us to bring our other two kids with us or we have to travel so far that we can’t bring them and there is a lot of guilt about leaving my daughters but when I stay with them and have my husband go with my son, I then feel guilty about not being with him. -Mother, N.America
Family	Strain on Marriage This is a very difficult experience. Need to have a good support team. My spouse is still more concerned with how others think about her. She does not support me while I am supporting her. This has been a strain on our marriage . -Father, N.America Looking after other children Looking after our other child who is too young to understand what’s happening and gets too restless to be at the hospital for too long. -Father, Asia-Pacific Stressful for Entire Family Having children with long term multiple health issues- one classed palliative is stressful for our entire multi-generational family. -Grandmother, N.America	Loss of Employment for Both Parents During this time at the hospital, we have felt helpless regarding medical expenses and daily life. Our child has been in the intensive care unit since birth for 8 months, and after discharge, my husband and I have been taking care of him for two to three years with almost no income . Now, at the age of 7, he requires another surgery, and he has been in the hospital for over three months without discharge. We are truly struggling financially . -Mother, Asia-Pacific Travel Expenses My husband and oldest daughter are 3 hours away and cost of travelling back and forth is expensive especially with us not working. -Mother, N.America Finance [makes it hard to see my child], my family is in another country. -Father, N.America	Family Isolation You are alone and isolated from the outside world , especially when traveling a thousand miles for specialized care. The general population does not understand, appreciate, and at times even care that a family with a child(ren) with chronic specialized medical needs is stuck and often isolated from what is considered normal family activities . -Father, N.America	Parent Separation from Other Children The breakdown of family unity. Father, Europe It was very sad for everyone and even more so when I came to [hospital city] because we were completely separated and it has been hard to adapt in that sense. -Mother, S.America Our kids are not able to be with us except on the weekends when we are able to find family members to bring them to (hospital city) to stay with us. Then we are juggling time with them and time they can spend with the baby. -Father, N.America Arranging care for our other child as numbers state no siblings - obviously this is to consider reducing bugs etc. so really important. It just meant that we could not be together at some really tough times. -Mother, Asia-Pacific
Hospital	Not Listened To Most departments at [hospital] are amazing - especially [names of specialty departments] However, [other specialty departments] would not listen to us and would not run necessary tests to help my child. It was frustrating, stressful, and sad . -Mother, N.America Poor Sleep Environment We don’t sleep well at the hospital. The beds/cots are incredibly uncomfortable. Lots of noise… beeps from IV pumps, cries, hallway chatter. -Mother, N.America	Hospital Expenses Two things that we’ve had to try and figure out parking, we pay about $80 a day for parking and have been ticketed (parking is crazy in [city of hospital]) and we do not have the right type of stroller for our daughter which is needed to get places as she’s the size of a six year old and gets tired easy. -Mother, N.America During our child’s medical treatment, the biggest issue we faced was the medical expenses. -Mother, Asia-Pacific	Hospital Policies Restrict Parents’ Support Systems I do not receive support from relatives because they are not allowed in to care for my daughter. -Mother, S.America Visitation restricted to the 4 on the list for the week or two weeks. -Mother, N.America Grandparents can’t come until they visit on weekends. -Mother, S.America Not being able to eat together in the hospital room due to restrictions on bringing your own food into the hospital. -Mother, Asia-Pacific	Hospital Policies Limiting Parents’ Time with Children The visiting time in the intensive care unit is limited to 30 minutes. -Parent, Asia-Pacific You can’t visit her every day, only 3 times a week. -Parent, S.America I would like to spend more time with my daughter. It is difficult to see the child for an hour in the hospital. -Mother, S.America Uncomfortable Hospital Environment They are in the ICU and there isn’t much space. I feel like an obstacle to the workers. -Father, Europe More air conditioner in the rooms because it gets really hot in the summer. The babies and the adults suffer a lot.- Grandmother, S.America
Community	Unaware of Community Resources I didn’t know about a social worker or a lot of things until recently. -Mother, N.America	Costs of Daily Living Not having any transportation while staying at Ronald McDonald housing is very inconvenient and challenging for daily errand runs or to get around. Car rentals and Ubers are too expensive for long term stay (more than 1 month). -Father, N.America Parents always have to prepare their own meals, which costs money for the meals , and that it is difficult to have a balanced diet. -Mother, Asia-Pacific	Being in a Distant City My child is in inpatient rehab for 2-3 weeks. Without an affordable and safe housing option I would not be able to be with her. We live almost 5 hours away and very rurally so staying in [the city] is intimidating . -Mother, N.America Unable to find Social Resources It has been hard to find groups to connect with to talk to, while my child has been receiving treatment. -Father, N.America We are very isolated in our small community. We have no access to respite or support caregiver services. -Mother, N.America	Hard to Find Childcare I have 2 other children it was hard to find childcare . -Mother, N.America I have a small baby and nobody to leave them with. -Mother, S.America Visiting the child undergoing treatment poses challenges , as the older sibling cannot be brought into the treatment area, and there is no assistance available from the unit to help care for the older child. -Mother, Asia-Pacific
Society	Stress of fighting with Insurance Companies It’s the anger and frustration of fighting with insurance companies to get the care and medications your child needs not a month or 3 or 6 months down the road but now right that moment. -Mother, N.America Health care providers and insurance make every situation more complicated and stressful than it needs to be. -Mother, N.America Support with medication s [would be helpful]. -Mother, S.America	Lack of Government Funding for Healthcare Costs And the lack of funding from government to relieve the [financial] burden that is given upon you for having a medical condition… government doesn’t care that both parents have worked for many, many years. -Father, N.America Financial aspect [would be helpful] because I don’t work and don’t receive social security help. -Father, Europe Insufficient Family Leave Policies [It is hard to be with my hospitalized child because I am] unable to take a long leave from work , salary will be reduced. -Mother, Asia-Pacific I am always with him. Dad has to work to keep the insurance. -Mother, N.America	Stigma Each experience is a learning experience, and each service is a new hope, we are always looking to improve our children’s aesthetics, because prejudice is still clear. Every time I went out with my child I suffered from people staring and then moving away due to his condition . -Mother, S.America Distance from Specialists It is very hard to have continuity when you live in a different health authority. We live very far from our daughter’s specialists, and this poses some challenges . -Mother, N.America	Insufficient Uptake of FCC Principles Even if they are not small children, children are children, and the anxiety of receiving treatment alone is immeasurable… I believe that many hospitals do not wish to have parental attendants . I would like to have more peace of mind for the children and the parents who want to accompany them. I sincerely hope we can create an environment where both children and their parents can feel more at ease and can focus on treatment together under the care of their parents. -Mother, Asia-Pacific Greater sincerity on the part of health personnel regarding diagnoses and more inclusion of the family member in patient care/treatment -Mother S.America

¹Full quote given for context, with key phrases related to theme/subtheme bolded. Abbreviations: SEM, Social Ecological Model.

Figure 1.

A socio-ecological mapping of themes and recommendations. Socio-ecological Model (SEM)[17]; Family-centered Care (FCC) [22].

Mental and Physical Well-Being

“It’s like you have to face a lion every day,” - a mother in Latin America. Parents’ mental health was described as one of the biggest challenges. Parents felt overwhelmed with fear and described their journey as a constant uphill battle to overcome emotional paralysis. Parents described overwhelm related to the shock of a child’s unexpected illness, injury or premature birth, and they described this trauma in the context of their previous life experiences and coping mechanisms. Often, they felt confusion, disorientation, sadness, grief, loss, despair, helplessness, uncertainty and depression. Some parents’ responses were persistently negative, while others were hopeful and suggested an inherent resilience. Parents’ emotional overwhelm was compounded by the experiences of other family members, and sometimes led to interpersonal struggles, such as strain on their marriages. Parents had to juggle continuing to look after their other children while wanting to be with the hospitalized child. These circumstances generated stress on the entire family. Hospital stressors added to this experience, especially when parents felt they were not listened to or were unable to rest in a poor sleep environment. Being in a new community far from home for their child’s care was challenging, and parents were often unaware of community resources to support them during their child’s hospitalization. Finally, another stressor parents described at the society level was fighting with insurance companies and advocating for their children so they could obtain the medical care and medications they needed.

Financial Stability

“We are truly struggling financially.” – a mother in the Asia-Pacific region. Parents described loss of employment as a source of financial strain. Many parents would stay at their home so they could maintain employment while the other parent was far away in the hospital. Some families had both parents experience the loss of their employment because of their child’s hospitalization. Families also incurred large hospital-related expenses for lodging, food, and transportation. Day-to-day costs such as parking, food, toiletries, and medications were burdensome for parents. The cost of living in the city where their child was hospitalized was often higher than in their home community. The cost of traveling to and from their home was a substantial expense, especially for families that had to travel by air. Local public transportation and taxis substantially added to daily expenses. These increased costs of living left parents struggling to pay their bills. Across all types of national health payment structures, parents from all regions expressed difficulty with paying the full costs of their child’s hospital care. While the specific financial needs differed among parents, they all longed for financial stability and generally felt under-supported by government policies, including a lack of funding for healthcare and insufficient family leave.

Social Support

“It’s the most isolating time in a parent’s life”- a mother in North America. Parents commonly expressed feelings of loneliness, isolation, and the need for social support in a distant city. Parents missed the comfort of their homes, extended families, friends, communities, and spiritual or religious supports. Some parents described isolation related to being alone in their child’s hospital room for hours, days, and even months without respite. Families also felt isolated because they were left out of “normal” family activities. Hospital policies often restricted parents’ support networks, limiting the number of family members allowed to be with the hospitalized child. Some parents experienced stigma and discrimination from other people, groups, or their government due to their child’s disability or illness. The organization of pediatric care in some countries required families to travel great distances to see a specialist or undergo surgery. Traveling a long distance to the hospital was isolating and stressful for families. Some families found it challenging to find resources when they returned to their home communities with less access to therapies, support services, medicines, and care for their child.

Being With Their Children

“No one talks about how hard it is being away from your other child.” - a mother in North America. Parents grieved when they could not stay with their hospitalized child and felt guilt and loneliness when other children remained at home. Balancing the needs between home and hospital was a universal struggle, complicated by the breakdown of family unity. Parents were separated from their hospitalized child by hospital policies to varying degrees. Some units or hospitals had extremely limited “visiting hours” for primary caregivers, as strict as half an hour per day, or three times a week, demonstrating a lack of FCC uptake in those hospitals. In contrast, other parents always had access to their hospitalized child. Some hospital environments had limited physical space, were uncomfortably hot, or had limited access to drinking water. Separation from their non-hospitalized children was exacerbated by age restrictions for visiting siblings. Childcare was scarce in the hospital community and in their home communities. Parents lamented these restrictions and described the profound pain of being separated from their children.

Sources of Strength, Valued Services and Recommendations

Parents described sources of strength and services they and their families highly valued during their experience of having a hospitalized child. They gave recommendations for improvements in services to support families during their child’s hospitalization and suggestions to improve external influences (Table 3 and Figure 1B). Parents described strengths in themselves and their ecosystems and identified valued services aligning with the four principles of FCC: respect and dignity, information sharing, collaboration and participation in their child’s care.

Table 3.

Parents’ Sources of Strength, Valued Services and Recommendations for Support: Illustrative Quotes ¹

SEM Level	Themes and Subthemes of Parents’ Sources of Strength, Valued Services and Recommendations for Support
FCC Principles and Definitions	Respect and Dignity Health care practitioners listen to and honor patient and family perspectives and choices. Patient and family knowledge, values, beliefs and cultural backgrounds are incorporated into the planning and delivery of care.	Information Sharing Health care practitioners communicate and share complete and unbiased information with patients and families in ways that are affirming and useful. Patients and families receive timely, complete and accurate information in order to effectively participate in care and decision-making.	Collaboration Patients, families, health care practitioners, and health care leaders collaborate in policy and program development, implementation, and evaluation; in facility design; in professional education; and in research; as well as in the delivery of care.	Participation Patients and families are encouraged and supported in participating in care and decision-making at the level they choose.
Individual	Individual Perseverance It’s difficult and even harder as a single parent with neurological issues themselves but I’m making it work I’m his biggest advocate his mom is no longer in the picture she’s moved far away… and will continue to advocate until my last breathing days. -Father, N.America I pray all the time. -Mother, N.America [We have] Fortitude, perseverance, and patience . - Mother, S.America Each day, we focus on our own tasks while staying optimistic and joyful as we accompany our child. We understand committed to walking this journey with our child . We believe that through perseverance , we can navigate these difficulties, turning adversity into success . Despite the hardships, we hold on to the hope that sweetness will follow the bitterness, and that after the storm, there will be a brighter day. -Mother, Asia-Pacific Self-Care Laundry, self-care needs – dietary needs, showering. -Father, Asia-Pacific Transportation to and from store to get necessities for [my]self. -Mother, N.America For the adults to be able to take a mental health break from the challenges of being strong for their child/ren. -Mother, N.America	Information Gathering It’s important to gather as much information as possible about the child’s medical condition . -Mother, Asia-Pacific It is a never-ending job to be the parent of a child with cancer. I would not trade it for the world though! It is my job to advocate for her, speak for her (since she is 2) and educate myself with as much research as I can get my hands on. -Mother, N.America In my case, being the grandmother, I would need guidance about my grandson’s disease and access channels to medications . -Grandmother, S.America	Helping Others It is so hard having a child with multiple life-threatening illnesses. I’d love to be a speaker to help other parents (maybe like Ted talks or podcasts) because I know I am not alone. -Mother, N.America In the future, if I have the ability, I can also help others . -Father, Asia-Pacific	Child Bonding and Closeness As a new mum, I feel really sad when I see my baby crying. But I think it’s a normal process and I have to deal with that. And of course, I could realize that the more I stay there with him, the more he wouldn’t cry because he knows my smell and he’s happy when mummy is there with him. -Mother, Europe All I want is to accompany her and ensure she completes her treatment well. -Mother, Asia-Pacific Seeing my baby grow and her adorable face brings me immense happiness . -Mother, Asia-Pacific Knowing that he is receiving great medical care and that I can stay close to him is the only thing that is getting me through this. -Mother, N.America
Family	Family Support Family support is needed in times like these because that would allow for one person to do something while the other person can stay with the child or provide support in the hospitalization process or healing process. -Mother, S.America Extended family support . They have been so important in our daughter’s journey. -Mother, N.America Family Perseverance Just taking it a day at a time and trying to enjoy or at least appreciate all moments we have together. -Grandmother, N.America The parents of children receiving care in a hospital are fighters like their children, they fight and struggle to make their children’s life dignified and as beautiful as possible . The best therapy is a smile, love and a loving word. -Mother, Europe	​	​	Friends and Family Participation I would like also for other members of my family to participate , supporting me and comforting me and helping me like in everyday life. -Mother, Europe
Hospital	Excellence in Care and Services It is very satisfying and really quite gratifying to find a hospital of such high caliber and a foundation with that human warmth that characterizes it. Thanks, truly from the bottom of the heart. -Mother, S.America Also, a big thank you to the staff of the [hospital] for their professionalism and the services provided that are up to par. -Father, Europe Wheelchair-accessible transportation. Better wheelchair accessibility . -Father, N.America It’s tough on the child being treated, but it’s toughest on the person accompanying them, so it would be nice to have a place to relax in the hospital. -Mother, Asia-Pacific Compassionate, Culturally Sensitive Care Because we come from so far away maybe the appointment requested by doctors can be a little more flexible with time -Mother, S.America Sometimes I just want them to listen to me , like with psychological counseling. I don’t need my problems to be solved or my anxiety to be relieved from those conversations, I just need to my complaints, current situation, etc. to be heard . -Father, Asia-Pacific Indigenous team at hospital are very supportive & helpful feeling culturally safe in hospital. - Mother, N.America Mental Health Services Psychological counseling for parents /caregivers can assist them in remaining calm and composed throughout the process or when facing any situation concerning their child. -Mother, Asia-Pacific Psychological support. -Father, Europe	Access to Healthcare Information I would like] Access to my baby’s medical records . -Mother, N.America [I recommend] A platform for sharing medical knowledge . -Mother, Asia-Pacific Communication [I would like] Between the hospital and myself, regular updates, when I can’t be there. - Mother, Asia-Pacific [I appreciate] Not being there and being able to be a part of the plan of care . -Mother, N.America The hospital should have a welcome family pack, that has a list of available services and locations of such. -Father, Asia-Pacific Patient and Family Education Well, the hospital attention is very kind, respectful, I feel very good with all medical concepts, and everyone is very attentive from the security guard to the doctor. -Mother, S.America The fetal care team has formally educated us on baby’s condition, and we feel so much better about his situation. - Mother, N.America I would like to have a consultant who can also help me understand the treatment . -Mother, Asia-Pacific	Ideas for Services I think [I would like] coordination of care, different specialists . -Father, N.America I hope the medical team can advocate for the inclusion of medically trained childcare professionals who can rotate shifts. This would provide caregivers with much-needed respite and the opportunity to rest. -Mother, Asia-Pacific [I recommend] Preventive healthcare for families . -Father, S.America	Hospital Policies for Family Participation Greater sincerity on the part of health personnel regarding diagnoses and more inclusion of the family member in patient care/treatment. -Grandmother, S.America Whenever my child is in the hospital , I am with him 100% of the time . Gladly, staff and volunteers in the hospital look after my needs so I can stay with him. -Mother, N.America Visiting hours of the NICU for another family member like grandparents . -Mother, Asia-Pacific Parent-Healthcare Team Relationships For those of us who are parents of children with chronic illnesses, we know that hospital stays will be a significant part of our life. We have worked hard to build relationships with our medical team and to advocate for our child’s (and our own) needs . We appreciate them and feel really lucky that they are so accessible and treat us with respect! -Mother, N.America
Community	Religious and Cultural Support in the Community To have a priest come to the hospital or here at the Ronald McDonald house and offer mass for all the sick patients, their families, doctors, nurses and to all the amazing staffs here at the Ronald McDonald House. -Mother, N.America We feel very supported by our community and our faith and know that is making a huge difference! -Mother, N.America Support for Basic Needs The free meals at the Ronald McDonald House and amenities make you feel better it’s nice to have a shower and be able to do laundry. Things like this make a difference in parents mental health and as a parent support like this means the world to you in times of need or crisis when your child is undergoing surgery or treatment. Staff is very friendly, and this means a lot to parents. -Mother, N.America Ronald McDonald House also offers invaluable support in reducing the economic burden on caregivers . It alleviates the financial strain associated with long-distance medical visits, including costs for transportation and lodging. -Mother, Asia-Pacific Peer Support Through our time at the Ronald McDonald House, I also met a wonderful group of parents who, like us, are striving for their children’s well-being. To this day, we still keep in touch . -Mother, Asia-Pacific My family comes from a small town …and the amount of community support that we have received is overwhelming and extremely humbling. -Mother, N.America	Knowledge of Community Resources Most have no idea what insurance can or will provide. Most don’t know of grants, loans, or many other financial benefits from programs and insurance. -Father, N.America [I would like] Better information of what services are available . -Mother, Europe [I would like] A map and directions of local services, i.e. supermarket, other shops, transport system. -Mother, Asia-Pacific A pamphlet or resource area for various services to help upon return home or other matters we have to manage. - Mother, N.America An at home doctor or nurse to consult with for medical concerns or advice. -Mother, Asia-Pacific	Community-Based Program Development I would love to contribute to the Ronald McDonald House myself. -Mother, Asia-Pacific Larger or multiple rooms for large families so we can all be together. -Father, N.America	Community-Based Lodging Previously, the 3–4-hour drive meant I could only see my child for 30 minutes to an hour each day. Now, living close to the hospital, it only takes 3-5 minutes to get there, allowing me to be with my baby every day. Seeing my baby grow and her adorable face brings me immense happiness. -Mother, Asia-Pacific I would like you to know that you have no idea how much it helps , we are just standing here taking care of our children thanks to you who open the doors and welcome us , thank you for everything, thank you very much. -Mother, S.America
Societal	Policies for Inclusive Healthcare The health service must improve in the country, more state support for people with disabilities and their inclusion. -Mother, S.America That the health care system must improve and the state must provide more and improve social policies . -Mother, S.America Financial Support Help with a little financial support because insurance doesn’t cover everything. -Father, N.America Financial aspect because I don’t work and don’t receive social security help . -Father, Europe Government funding to help with loss of wages . -Mother, Asia-Pacific Help parents with or consult government social support programs for children in special hospital treatment situations as well as filling out social security forms . -Mother, Europe	Information About Global Access to Care That they provide us with more information about foundations where they do treatments out-of-country. - Father, S.America Help us find medicines that are not found in [home country]. - Mother, S.America	Valuing a Culture of Research I hope this research will benefit families and children who suffer as we do today. -Father, Asia-Pacific To do deeper research about the medicine being used on children. -Mother, S.America	Recognition of Community-Based Organizations That the care provided in the home (Ronald McDonald House) be more recognized , so some families do not have to experience hunger and cold on the streets. -Mother, S.America

¹Full quote given for context, with key phrases related to theme/subtheme bolded. Abbreviations: FCC, family-centered care; SEM, social ecological model. SEM [17]; FCC [22].

Respect and Dignity

“Fortitude, perseverance and patience” – the strengths of a mother in Latin America. Parents demonstrated individual perseverance through relentless support for their child and a positive attitude. Parents’ physical health was compromised by their own recoveries or illnesses, poor nutrition, and limited self-care. Getting fresh air, exercise, sleep, and a healthy diet were often neglected during the parents’ time at the hospital. Family support, both a physical presence and perseverance, was meaningful for parents. Excellence in hospital care and services was also vital to parents, with some expressing gratitude for hospital doctors, nurses, and other staff who made them feel listened to, honored, and validated. When respect and dignity fell short for other parents, they recommended services at the hospital for compassionate and culturally sensitive care, as well as opportunities for self-care, childcare, religious support and mental health services. Some parents requested better listening and enhanced acknowledgement of their beliefs, values and cultural backgrounds. Parents often found connection and support from peer parents, staff and volunteers while staying at the Ronald McDonald House and at the hospital. They were grateful when receiving compassionate, culturally safe treatment, peer support, and help with their basic needs. At the societal level, parents expressed a desire for inclusive healthcare services and financial aid for children requiring specialized hospital care.

Information Sharing

“A platform for sharing medical knowledge,” – suggested a mother in the Asia-Pacific region. Parents reported that they typically received appropriate and timely information on how to access resources, and they learned to advocate for themselves. Sometimes parents wanted better education about their child’s specific condition, hospital systems, or medications. They often obtained health literacy through self-education. Parents implored hospital staff to provide sufficient and accurate access to their child’s medical records as well as communication about the plan of care. Parents appreciated the education they received from the hospital staff while also seeking information about local resources in their temporary communities, including both medical and practical resources. Some suggested the need for better communication, organization, and access to local resources. Parents recommended improved services in their home communities. Globally, parents valued information about governmental policies that affected their child’s healthcare. Some parents desired information about foundations providing treatment abroad or other ways to access healthcare outside of their home country.

Collaboration

“The state must provide more and improve social policies” - a mother from Latin America. Many parents shared their ideas for collaborating in healthcare program development and facility design. Parents also recommended hospital improvements, such as creating comfortable spaces and implementing more inclusive visiting policies, to enhance systems for future families. Parents wanted to support community-based organizations, such as the Ronald McDonald House, as a way to “give back” and provided suggestions on how parent involvement could be promoted. Parents identified their participation in this research study as a collaborative way to improve healthcare for children and families beyond their own. Parents from all regions called for governmental and societal-level change to better support families with an ill or injured child.

Participation

“Knowing that he is receiving great medical care and that I can stay close to him is the only thing that is getting me through this.” – a mother in North America. Parents’ participation in their child’s hospital care and decision-making was influenced by feelings of love, bonding, and connection with their child. In general, parents wanted to be with their child as much as possible and to follow every up and down in their child’s journey. Other family members, such as grandparents and close friends, were important influences on participation. Parents worked hard to build relationships with their child’s healthcare team. They wished for extended “visiting hours” and permission for siblings and extended family members to be present with the child. Parents offered praise and gratitude for how staying nearby their child and receiving support services helped them become healthier, happier, and more present for their child. They wanted society at large to become more aware of how effective the Ronald McDonald House and other support organizations were in supporting families during their child’s health crisis, and to provide more support for these programs.

Discussion

In this analysis, we explored a large international dataset of parents’ free-text comments to gain a deeper understanding of their experiences, sources of strength, and valued services during their child’s hospitalization and situated their experiences and recommendations within the FCC and SEM frameworks. From this deep and broad analysis, the common needs, valued support services, and gaps in both description of need and services to address needs are readily apparent. Our findings revealed the extent to which parents across different global regions share common needs, including mental and physical well-being, financial stability, social support, and time spent with their children. While it is well-established that pediatric hospitalization impacts parent mental health and well-being,^9-12 our findings uniquely demonstrate the mental, emotional, and physical toll of a child’s hospitalization on parents and families across all levels of the SEM, including the hospital, community, and societal levels. Parents expressed frustration with navigating unknown community resources and fighting with insurance companies. Parents of children with complex chronic conditions and medical needs have described similar experiences and administrative burdens that take a toll on the entire family. ³¹ These challenges are coupled with parents’ need for financial stability during a time when their child’s health outcomes may be uncertain. ¹⁶ Country- and region-specific studies have demonstrated the financial burden parents experience during pediatric hospitalization, including out-of-pocket medical costs and non-medical costs such as transportation, travel, and lost work.^32,33 Parents in our study described similar challenges and highlighted the need for community- and society-level resources to help them during their child’s hospitalization.

Social support is well-established as a protective factor for mental health and family functioning, and interventions exist to enhance parents’ social support during pediatric illness.^34-36 Consistent with our quantitative analysis of parent survey data from this cohort,^1,37 parents’ written comments indicated the importance of social support in buffering the many stresses related to their child’s hospitalization, at times arising from hospital policies limiting access to support networks or having to relocate to have their child receive hospital or specialized care. As reported in prior literature, parents reported a desire to be involved in their child’s care during hospitalization and in the care of their other children who are not hospitalized. ³⁸ Less emphasized in previous literature is the alarming extent to which parents from multiple geographical regions are still being restricted from being with their hospitalized child. This highlights persistent hospital-wide and regional gaps in FCC intervention uptake, with reports from parents in our dataset that they were allowed only 30 minutes daily or permitted to visit their child just 3 times per week. Parents and their children deserve free and full access to each other during hospitalization,^22,23 and hospitals and policymakers must support this FCC practice for the benefit of the pediatric patient and parents alike.

Parents in this study provided insights about sources of support across SEM levels, which were closely aligned with FCC principles. Parents desired culturally sensitive, compassionate, and high-quality care that honors their preferences and choices and affirms their dignity and worth. They appreciated hospital- and community-based resources that provided mental health support, spiritual and cultural support, and basic amenities such as housing, meals, and transportation. These interventions are not always routinely available, and recent systematic reviews highlighted the need for the implementation of interventions to support parent mental health and unmet needs.^8,39 Consistent with previous findings, parents in this study desired clear communication, information, and relevant education about their child’s health issue. ⁹ They suggested collaborative efforts with hospitals, community organizations, and policy-makers, to give back and create support for future parents of hospitalized children. The implementation of co-designed interventions into routine care is needed.^40-42

Our findings provide a novel and holistic approach to examining FCC in a broader socio-ecological context rather than limiting FCC assessment and intervention to the interpersonal (e.g., parent-hospital staff relationships) or hospital policies and procedures, as has been the common focus of prior FCC research.^14,15,19,20 Our findings suggest that FCC interventions at the hospital, community, and societal levels are still needed to reduce the burden and impact of pediatric hospitalization on parents, families, and communities worldwide.

Implications

From our analysis of this large, international data set, we have created a comprehensive conceptual mapping of parent and family needs, strengths, valued services, and recommendations across all levels of the SEM and main domains of FCC. The rich detail about the lived experiences of parents from multiple countries, with children hospitalized for a wide range of conditions and cared for in acute and critical care settings, highlights common and urgent needs for supports and services related to physical and emotional health, financial strain, separation from social support, and separation from children. This comprehensive analysis and conceptual maps (Figures 1A and B) can be used to raise awareness of the challenges and needs faced by parents and families of hospitalized children across a broad geography and range of health systems.

Our findings can be used to advocate for cross-sector collaboration to address the critical gaps identified, particularly those at the health and social system levels. Using the SEM and FCC frameworks, we added to the existing research by revealing that parents’ needs during pediatric hospitalization span beyond the individual parent and are influenced by the family, hospital, community, and society at large. Parents’ concerns in this study about the support needs of their other children featured prominently and represent a dimension of family support with limited evidence and a need for further research. ⁴³ While beyond the scope of our investigation, there are likely local, regional and country differences in parent and family experiences. However, to translate these findings into local, regional, and national programming to address family support needs at each level of the SEM and across the dimensions of FCC frameworks, we strongly encourage partnership with families and communities. Family and community partnership work should follow well-established guidelines and best practices,^44-46 to identify specific gaps in services, assets, and opportunities for innovation.

Our findings can also advance research and practice regarding patient-reported experience measures (PREMs). A recent systematic review of pediatric PREMS identified the common measurement domains, which were dominated by parental proxy measures rather than direct child measures. ⁴⁷ While many of the domains in existing pediatric PREM measures align with the individual and interpersonal SEM levels, they lack items measuring the organizational and societal domains and incompletely address the FCC domains. These omissions in patient experience measurement instruments can lead to ‘blind spots’ and systemic gaps in services and support needs for patients and families. Further research is needed to develop additional PREM items for a more holistic assessment.

Strengths and Limitations

A major strength of this study was our recruitement strategy. Parents who participated in this research were recruited from a Ronald McDonald House, where they stayed during their child’s hospitalization. The high study participation rates likely resulted from their trusting relationship with the Ronald McDonald House staff. Participants were generous with their thoughts and shared vulnerabilities that might not have been otherwise revealed. They expressed gratitude to the researchers and felt it was a way to “giving back” for the services they had received. Methodological rigor was maintained in this study by adhering to the four criteria for trustworthiness in qualitative research: credibility, transferability, dependability, and confirmability. ⁴⁸ We employed quality checks during the coding process to enhance credibility and provided details about the research context and data collection methods, allowing readers to consider for themselves whether the findings are transferable to their own contexts. We aimed for full transparency in describing our research process to address dependability. We practiced reflexivity by critically examining our own values and biases to enhance confirmability. We also used a systematic process for translation of languages throughout the study, from survey development to data analysis, to enhance cultural sensitivity and cross-cultural understanding of the data.

Notwithstanding the above, our study findings should be interpreted in light of several limitations. Sources of bias in this study include non-response bias. We found several statistically significant differences in parent and child factors between parents who provided written responses and those who did not; therefore, our sample may not be fully representative. Although the majority of parents stayed elsewhere for part of the time during their child’s hospital stay, our findings may not reflect the views of parents who did not have the opportunity at some point during their child’s stay to receive any free or low-cost lodging in proximity to their children, meals, access to support services, and opportunities for interactions with parents going through similar situations. Parents who are unable to stay near their hospitalized child or bear the full costs and logistical burden of such stays may have even greater challenges to maintaining mental and physical well-being, financial stability, social support, and seeing their hospitalized child. This is an area for future research.

Conclusions

The findings from this research on the common needs, strengths, valued services, and recommendations of parents of hospitalized children inform practices and policies to address the systemic factors that shape family health outcomes. This analysis lays the foundation for future local, regional, and global interventions within hospitals and health systems, and in collaboration with community and social support agencies, to better meet parents’ needs during their child’s hospitalization, thereby enabling children and their families to have greater opportunities for future health and development.

Appendix.

Abbreviations

PTSD

Post-traumatic stress disorder

FCC

Family-centered care.

ORCID iDs

Christine R. Hodgson https://orcid.org/0000-0002-3862-9811

Maram Kiran https://orcid.org/0009-0004-8097-7889

Linda S. Franck https://orcid.org/0000-0003-4291-9181

Ethics Considerations

UCSF Institutional Review Board protocol # 22-37577.

Consent to Participate

Participants were given a written information sheet explaining that the project was research, it was voluntary and they cold skip questions or stop at any time without penalty. The sheet stated that information was anonymous, confidential, stored on a secure university platform, and accessible only to the research team. When the participants agreed to proceed and received either a link or a paper survey, there was a statement saying that proceeding indicated their consent.

Data Availability Statement

Deidentified data will be shared for academic research purposes upon reasonable request directed to Linda S. Franck (linda.franck@ucsf.edu) from qualified investigators up to 3 years after publication.