Barriers to Care and Perceived Need for Mental Health Services Among Adolescent and Emerging Adult Survivors of Pediatric Brain Tumors

Abstract

Purpose:

Pediatric brain tumor survivors (PBTS) commonly experience mental health challenges, which can be exacerbated during adolescence and emerging adulthood (AEA). We examined survivors and caregivers' perceived need for mental health services and barriers to receiving mental health care.

Methods:

Families completed surveys to assess perceived need for mental health services, socioemotional impairment, and barriers to mental health services. Survivors were between 13 and 25 years of age and were at least 5 years from diagnosis.

Results:

Sixty-nine caregiver-PBTS dyads participated, as well as 18 survivors and 20 caregivers who participated individually. Approximately half of survivors were male (n = 57, 52.3%), 85% (n = 93) were White, and their average age was 19.31. Most caregivers (n = 63, 70.8%) and survivors (n = 55, 63.2%) endorsed need for services for the survivors. Adolescents endorsed more barriers related to perceived helpfulness, t(18) = 2.3, p = 0.03, d = 0.54, and effects of services, t(18) = 3.8, p < 0.001, d = 0.88, than their caregivers. Emerging adults, t(34) = 2.4, p = 0.02, d = 0.41, endorsed more content barriers than their caregivers..

Discussion:

Both survivors and their caregivers reported obstacles to accessing mental health services such as perceived lack of need, concerns regarding the effectiveness and usefulness of services, and limited knowledge about the content of services. Psychoeducation and psychosocial screening can support families in understanding survivors' need for mental health services.

Introduction

Despite 5-year survival rates nearing 75%, pediatric brain tumors and their treatment contribute to long-term adverse consequences in adolescent and emerging adult (AEA) survivors.¹ The incidence of mental health diagnoses such as depression (19%), anxiety (20%), suicidal ideation (10.9%), and behavioral problems (28.7%) is higher among pediatric brain tumor survivors (PBTS) than in AEA without brain tumors.^2,3 PBTS commonly experience social isolation,⁴ withdrawal,⁴ and poor self-esteem.⁵ In addition, survivors are at risk for neurocognitive impairment in numerous domains, including overall cognitive ability, executive functioning, visuospatial skills, and language.^6–9 Adverse psychosocial and cognitive outcomes may be particularly impactful for survivors during the AEA period due to increasing levels of independence, changes in social dynamics, gaps in transition care, and decision-making around long-term educational and career plans.¹⁰

Mental health services among PBTS are underutilized. While 82% of childhood cancer survivors report concerns in at least one behavioral, cognitive, or emotional domain,¹¹ about 38% have received a referral for psychological services, and only 10% of survivors have used mental health services.¹² Although few studies have examined mental health service utilization in PBTS, health care providers commonly have difficulty evaluating and treating mental health disorders in this population due to the overlapping neurological, cognitive, affective, and behavioral symptoms.¹³

This is likely further confounded by the challenges associated with the AEA period, including hormonal changes, social and academic pressure, and identity formation. Systemic barriers exist, hindering mental health service use in PBTS, such as lack of comprehensive insurance provision,¹⁴ high cost of services,^14,15 long wait lists, lack of reliable transportation,¹⁵ limited time off work for caregivers to attend or assist PBTS with appointments, societal stigma toward individuals with mental health diagnoses and those who are neurodivergent,^15,16 and lack of mental health providers, particularly those with expertise in PBTS.¹⁵

Understanding AEA survivors' perceptions of their own mental health and barriers to care is important as they take a larger role in health care decision-making. However, caregivers often continue to support survivors' health care and manage late effects. Thus, it is important to consider both survivor and caregiver perspectives of mental health challenges and service needs during the AEA period.¹⁷ In this study, we examined survivors' and their caregivers' perceived need for mental health services and characterized the most endorsed barriers.

We also assessed whether perceived need and barriers to mental health care differed significantly between survivors and their caregivers, and whether need and barriers were associated with demographic factors (e.g., insurance status, geographic region). We hypothesized that survivors and caregivers would endorse high levels of mental health service need and barriers to services such as transportation, cost, and lack of knowledge. We also hypothesized that survivors would perceive greater need, particularly emerging adults, due to more awareness of their own internal experiences and challenges.^7,18

Method

Sample

Following IRB approval, caregivers and AEA PBTS were recruited from four Midwestern academic medical centers from June 2020 through April 2022. Participants were recruited at Cincinnati Children's Hospital Medical Center between June 2020 through April 2021, at University of Pittsburgh Medical Center between April and June 2021, at Nationwide Children's Hospital between June and August 2021, and at West Virginia University Health System between January and April 2022. Participants were approached in person or by phone through cancer registries and oncology follow-up clinics. We attempted to recruit both the survivor and primary caregiver whenever possible, but welcomed individual participation if only one member of the dyad was available or willing to participate.

Caregivers and PBTS were included if the survivor (1) had a history of a brain tumor, (2) was at least 5 years post-diagnosis at the time of participation, and (3) was between 13 and 25 years of age. We recruited PBTS at least 5 years post-diagnosis because the likelihood of recurrence is lower and late effects have likely emerged.^19–21 Participants also needed to be able to read and comprehend the measures administered in English.

Measures

Chart reviews

We extracted information from the medical records about tumor and treatment characteristics (e.g., receipt of chemotherapy, radiation).

Demographic characteristics

Caregivers and survivors completed a demographic questionnaire, which included questions about race/ethnicity, gender, and SES (i.e., income, insurance status, receipt of public assistance). Survivors' geographic region of residence (rural or nonrural) was categorized using rural-urban commuting area codes.²² Survivors and caregivers were classified as Appalachian by either (1) self-identification and/or (2) residence in an Appalachian county.²³

Perceived benefit of mental health services

We created a single item to assess survivors' and caregivers' perceptions of whether the survivor would benefit from mental health care (i.e., “Do you believe you/your child currently would benefit from mental health services, like seeing a psychologist, neuropsychologist, psychiatrist, or school counselor?”). This question was adapted from questions used in previous studies.^24,25 We used the term “benefit” instead of “need,” aiming to mitigate the stigma associated with the perception of individuals “needing” such services. Survivors were then prompted to expand on “why” they perceived benefit or “why not.”

Barriers to care

Caregivers and survivors completed a questionnaire developed by Yeh et al., which measures common barriers to mental health service utilization.^26,27 The scale has demonstrated reliability (Cronbach's alpha 0.60–0.78).²⁷ Barriers were assessed using 52 items in seven domains, with participants indicating “yes” if they endorsed a barrier in that area and “no” if they did not.

The seven scales consisted of the following: (1) Content of services (six items about what might occur during services, e.g., services may not be confidential); (2) helpfulness of services (eight items, e.g., services would not help); (3) provider characteristics (five items, e.g., you may not like or trust the provider); (4) effects of services (10 items about the potential influence of services on the child's family or social situation, e.g., you were afraid of what your friends and family would say); (5) economic/financial constraints (five items about finances/insurance, e.g., insurance benefits were exhausted); (6) accessibility (14 items about practical problems, e.g., you didn't know where to go for services); and (7) lack of need for services (four items about perceived need for services, e.g., your child's problem was not a mental health problem).^26,27

Survivors may have limited knowledge of their health care insurance coverage and benefits and rate themselves as less financially independent, and the adolescence period tends to be prolonged in PBTS.^28,29 Therefore, PBTS did not complete questions pertaining to financial constraints.³⁰ In addition, we omitted two questions about language barriers because all families in the study spoke English.

Survivor socioemotional impairment

Caregivers and survivors completed the Strengths and Difficulties Questionnaire (SDQ), a 25-item screening measure that assesses emotional symptoms, conduct problems, hyperactivity/inattention, peer relationship problems, and prosocial behavior. The SDQ has good content and predictive validity and reliability. We calculated the number of survivors and caregivers who endorsed subclinically elevated or greater concerns on the total scores (i.e., ≥14 for caregivers, ≥16 for survivors). This corresponds with ratings obtained by <10% of a normative sample and has been used in previous studies.^31,32

Perceived need

We created a “perceived need” variable, based on whether a participant endorsed benefit on the single yes/no item and/or demonstrated subclinically elevated SDQ scores. Given that the SDQ is a short screening tool, we expected that some participants would perceive benefit on the single item assessment without subclinical elevations. In addition, given stigma toward mental health services, we expected that some participants may have subclinically elevated scores without perceiving benefits of mental health services.

Data analysis

Descriptive statistics (M, SD, frequency) were used to summarize medical and demographic characteristics. Using chi-square analyses for categorical variables and independent sample t-tests and correlations for continuous variables, we examined whether demographic factors were associated with completer versus noncompleter status, perceived mental health service need, and barriers. We did not examine the association between race or ethnicity and these variables due to the small number of racially minoritized and Hispanic participants. Using ANOVA, we examined whether the type of participation (i.e., dyad, survivor only, caregiver only) was associated with demographic factors, perceived need, number of barriers, or SDQ total scores. Using the McNemars' test, we compared survivors' and caregivers' perceived need. AF and JP used inductive methods to categorize families' responses into themes.

We qualitatively categorized survivors' and caregivers' reasons for perceiving mental health service benefit or not needing services. We independently coded themes into higher level themes and came together for consensus.³³ We then reviewed themes and their associated responses with the research team, comprising the co-authors on this article. Using paired sample t-tests between adolescents and caregivers and emerging adults and caregivers, we examined differences in barriers by domain. Finally, we characterized the 10 most common barriers according to survivors and caregivers, respectively. To isolate the impact of barriers to care on individuals who “need” services, we only examined barriers to care for participants who “perceived need.”

Results

Across four sites, 87 survivors (23 adolescents 13–17 years of age and 54 emerging adults 18–25) and 89 caregivers participated in the study, representing 69 pairs of survivors and caregivers (Tables 1 and 2). At Cincinnati Children's Hospital Medical Center, 70 families were recruited, and 57 (81.4%) completed surveys. At Nationwide Children's Hospital, 43 families were recruited and 31 (72.1%) completed surveys. Due to error in data collection, we were unable to assess the response rates or compare participants with complete data to those who had missing data at University of Pittsburgh Medical Center and West Virginia University Health System.

Table 1.

Demographic Characteristics of Survivors Based on Survivor Report

Characteristic	Survivors who endorsed need for services (n = 55)	Survivors who did not endorse need for services (n = 32)	Total survivors (N = 87)
Survivor gender, n (%)
Female	32 (74.4%)	11 (25.6%)	43
Male	23 (41.8%)	21 (65.6%)	44
Survivor race, n (%)
White	47 (60.3%)	31 (39.7%)	78
Black/African American	3 (100%)	0	3
Native American, Alaskan, or Hawaiian	1 (100%%)	0	1
Asian American	2 (66.7%)	1 (33.3%)	3
Do not Know	2 (100%)	0	2
Survivor ethnicity, n (%)
Hispanic	1 (50.0%)	1 (50.0%)	2
Not Hispanic	48 (62.3%)	29 (37.7%)	77
Don't know/Not reported	6 (75.0%)	2 (25.0%)	8
Survivor age, years, M (SD)	19.61 (3.31)	19.60 (3.43)	19.61
Adolescent (ages 13–17), n (%)	18 (64.3%)	10 (35.7%)	28
Emerging adult (ages 18–25), n (%)	37 (62.7%)	22 (37.3%)	59
Time since diagnosis, years, M (SD)	9.58 (4.72)	8.76 (4.49)	8.90
Tumor type^a
Astrocytoma/glioma	18 (40.9%)	26 (59.1%)	44
Medulloblastoma	6 (54.5%)	5 (45.5%)	11
Germ cell tumor	3 (42.9%)	4 (57.1%)	7
Ependymoma	1 (33.3%)	2 (66.7%)	3
Atypical teratoid-rhabdoid tumor	0	1 (100.0%)	1
Other^b	3 (27.3%)	8 (72.7%)	11
Surgical resection	47 (65.3%)	25 (34.7%)	72
Chemotherapy	31 (63.3%)	18 (36.7%)	49
Radiation	37 (64.9%)	20 (35.1%)	57
Current living situation, n (%)
Living with caregiver	48 (65.8%)	25 (34.2%)	73
Not living with caregiver	7 (53.8%)	6 (46.2%)	13
Missing/Not reported	0	1 (100.0%)	1
Appalachian, n (%), identified by geographic region of residence^b	23 (67.6%)	11 (32.4%)	34
Rural, n (%)	10 (45.5%)	12 (54.5%)	22
Survivor insurance status and type, n (%)
Medicaid	16 (75.0%)	8 (25.0%)	24
Private insurance	29 (59.2%)	20 (40.8%)	49
Medicaid and private insurance	5 (62.5%)	3 (37.5%)	8
No insurance	2 (66.7%)	1 (33.3%)	3
Don't know	3 (100%)	0	3
Site (n, % of site)
West Virginia University Health System	3 (100%)	0	3
University of Pittsburgh Medical Center	9 (90.0%)	1 (10.0%)	10
Nationwide Children's Hospital	16 (55.2%)	13 (44.8%)	29
Cincinnati Children's	27 (60.0%)	18 (40.0%)	45
Total (all sites)	55 (63.2%)	32 (36.8%)	87

Based on survivors who completed main study outcome (i.e., barriers questionnaire).

Due to errors with data collection, tumor type and treatment characteristics was not able to be obtained from participants in University of Pittsburgh Medical Center and West Virginia University Health System.

Other tumor types include craniopharyngioma, choroid plexus carcinoma, ependymoma, meningioma, dysembryoplastic neuroepithelial tumor, ganglioglioma, primitive neuroectodermal tumors, germinoma, infant high-grade brain tumor, lesion left lateral temporal lobe, astroblastoma, glioneuronal tumor, and neuroepithelial tumor.

Table 2.

Caregiver Demographic Characteristics

Characteristic	Caregivers who endorsed need for services (n = 63)	Caregivers who did not endorse need for services (n = 26)	Total caregivers (N = 89)
Relationship to survivor, n (%)
Mother	56 (70.0%)	24 (30.0%)	80
Father	5 (71.4%)	2 (28.6%)	7
Grandparent	2 (100%)	0	2
Caregiver level of education, n (%)
No high school diploma/GED	0	0	0
High school diploma/GED	19 (82.6%)	4 (17.4%)	23
At least 2 years of college	13 (68.4%)	6 (31.6%)	19
Bachelor's degree	16 (66.7%)	8 (33.3%)	24
Graduate degree	12 (85.7%)	2 (14.3%)	14
MD/PhD/JD	3 (33.3%)	6 (66.7%)	9
Caregiver race, n (%)
White	58 (72.5%)	22 (27.5%)	80
Black/African American	4 (80.0%)	1 (20.0%)	5
Native American, Alaskan, or Hawaiian	0	0	0
Asian American	0	3 (100.0%)	3
Do not know	1 (100.0%)	0	1
Caregiver ethnicity, n (%)
Hispanic	1 (100%)	0	1
Not Hispanic	61 (70.1%)	26 (29.9%)	87
Do not know	1 (100%)	0	1
Appalachian, n (%)	23 (67.7%)	11 (32.4%)	34
Rural, n (%)	11 (64.7%)	6 (35.3%)	17
Receipt of public assistance, n (%)
Yes	7 (87.5%)	1 (12.5%)	8
No	55 (68.8%)	25 (31.3%)	80
Not reported	1 (100%)	0	1
Annual family income, n (%)
Below $40k^a	14 (66.7%)	7 (33.3%)	21
Above $40k	48 (70.6%)	19 (27.9%)	67
Survivor insurance status and type, n (%)
Medicaid	19 (82.6%)	4 (17.4%)	23
Private insurance	39 (68.4%)	18 (31.6%)	57
Medicaid and private insurance	4 (33.3%)	2 (66.7%)	6
No insurance	1 (50.0%)	1 (50.0%)	2
Site, n (%)
University of Pittsburgh Medical Center	8 (57.1%)	6 (42.9%)	14
West Virginia University Health System	3 (100%)	0	3
Nationwide Children's Hospital	19 (79.2%)	5 (20.8%)	24
Cincinnati Children's Hospital Medical Center	32 (66.7%)	16 (33.3%)	48

$40,000.

At Cincinnati Children's Hospital Medical Center and Nationwide Children's Hospital, there was no difference in age, race, geographic location (i.e., Appalachian, rural), treatment approach (i.e., receipt of chemotherapy, radiation, surgery), median income, age at diagnosis, and time since treatment for those who completed surveys in comparison to those who did not. Survivors who participated alone were older (M = 21.70, SD = 2.88) than those who participated with a caregiver (M = 18.99, SD = 3.22, p = 0.003) and survivors of caregivers who participated alone (M = 18.15, SD = 3.00, p = 0.001). No other demographic or outcome variable (e.g., perceived need) was associated with participation type (i.e., both caregiver and child, caregiver only, survivor only).

Endorsement of need

Forty-eight (57.8%) survivors indicated they would benefit from mental health services on the single-item assessment, and 22 (26.5%) survivors had subclinical elevations on the SDQ. Fifty-seven (64.8%) caregivers reported benefit on the single-item assessment, and 38 (42.7%) reported subclinical elevations on the SDQ (Tables 3 and 4).

Table 3.

Agreement Between Perceived Benefit and Elevations on Strengths and Difficulties Questionnaire Among Caregivers

	Elevated concerns on SDQ
	Yes	No
Caregiver-reported perceived benefit
Yes	32	25
No	6	25

One caregiver did not complete the SDQ.

SDQ, Strengths and Difficulties Questionnaire.

Table 4.

Agreement Between Perceived Benefit and Elevations on Strengths and Difficulties Questionnaire Among Survivors

	Elevated concerns on SDQ
	Yes	No
Survivor-reported perceived benefit
Yes	15	33
No	7	28

Four survivors did not complete the SDQ.

In total, either on the benefit question or SDQ, 63 (70.8%) caregivers endorsed mental health service need for their survivor, and 15 (62.5%) adolescents and 40 (63.5%) emerging adults endorsed need for themselves (Tables 4 and 5). Females were more likely to endorse need than male survivors (χ²(1) = 4.6, p = 0.032), and nonrural survivors (69.2%) were more likely to endorse need than rural survivors (45.5%; χ²(1) = 4.0, p = 0.046). Females also endorsed more barriers (M = 11.02, SD = 8.78) than males (M = 7.00, SD = 6.14, t(75) = −2.47, p = 0.02). Caregiver- and PBTS-reported need did not differ from one another for adolescents or emerging adults (p > 0.05). Agreement was 76%. For dyads who disagreed, 11 caregivers endorsed need, while their PBTS did not, and five survivors endorsed need, while their caregiver did not.

Table 5.

Open-Text Box Responses of Reasons Why Participants Endorsed Or Did Not Endorse Mental Health Service Need for Survivors (n = 30 Responses) and Caregivers (n = 59 Responses)

Concern	Description	Example	Survivors, n (%)	Caregiver, n (%)
Negative mood	Participants described mood concerns such as sadness, depression, and anger	“Dealing with depression, I'm on medicine and seeing a doctor”	10 (33.3%)	17 (28.8%)
Anxiety	Participants described anxiety and worries	“Anxiety and issues dealing with stress”	11 (36.7%)	10 (16.9%)
Cancer specific	Participants identified concerns specific to brain tumor survivorship (e.g., neuropsychological effects of their brain tumor, coping with fear of recurrence)	“Damage to certain areas of her brain caused processing, executive functioning & other issues that are not experienced by a typical 17-year-old”	5 (16.7%)	12 (20.3%)
Wanting additional support	Participants believed professional mental health support (e.g., having someone to talk to) could be helpful	“Someone I can talk to without a biased opinion”	16 (53.3%)	4 (6.8%)
Importance/benefit	Participants believed that mental health services are generally important/could be beneficial for everyone	“Mental health is important”	4 (13.3%)	0
Medication	Participants identified wanting services for psychiatric medication management	“To help me with to get pills to help manage Tourette's, ADD etc.”	2 (6.7%)	0
ADHD	Participants believed services would be helpful for managing inattention and ADHD diagnoses	“ADHD and self-esteem issues”	1 (3.3%)	4 (6.8%)
Currently in therapy	Participants identified that they are currently receiving services and found these services helpful	“He currently sees all of those professionals and it is helpful”	6 (20%)	13 (22%)
Anger	Participants identified that services would be helpful in managing anger or emotional outbursts	“He has some anger issues”	0	3 (5.1%)
Other/nonspecific emotional challenges	Participants identified other ways that services would be helpful (e.g., personality changes, grief reactions)	“Personality changes”	0	2 (3.4%)
Learning and thinking	Participants described wanting more information and support in managing neuropsychological late effects (e.g., working memory, academic difficulties)	“Long term side effects from Chemo and radiation have played a significant role in her schooling and the ability to remember or comprehend a lot of the work.”	0	2 (3.4%)
Trauma	Participants believed services would be helpful in processing traumatic events (including brain tumor diagnosis and treatment)	“I would feel more comfortable with processing what happened to me with someone who was not impacted since I do not want to bring up trauma with loved ones that stems from my brain tumor.”	1 (3.3%)	2 (3.4%)
School stress	Participants described difficulties coping with the stress of school	“She has some anxiety about achieving her highest potential in college”	0	2 (3.4%)
Survivor's guilt	Participants reported survivor's guilt related to surviving their brain tumor	“Because I frequently have survivors' guilt and very bad nightmares about tumor coming back”	1 (3.3%)	1 (1.7%)
Bullying	Participants described concerns around coping with bullying in school	“To address continued bullying regarding his scars”	0	1 (1.7%)
Assistance with school accommodations	Participants described wanting assistance with school accommodations (e.g., 504 plan)	“Only for review of 504 plan”	0	1 (1.7%)

Reason	Description	Example	Survivors, n (%)	Caregiver, n (%)
Doing well	Participants identified feeling well adjusted	“I think my mental health is really good”	13 (43.3%)	22 (73.3%)
Do not perceive need	Participants described feeling that professional help was not currently necessary for their concerns	“I don't think I need it right now”	10 (33.3%)	0
Previous services helped	Participants reported that they had benefited from services in the past and no longer needed support	“I've had a psychologist before, she helped me clear my stuff up!”	1 (3.3%)	2 (6.7%)
Has support	Participants identified relying on informal supports (e.g., family and friends) instead of professional support	“Lots of support from family and friends”	1 (3.3%)	2 (6.7%)
Currently in therapy	Participants described that they did not currently need services due to already being established with a mental health provider	“Because I already have one”	1 (3.3%)	2 (6.7%)
Faith	Participants cited strong faith as reasons for not currently needing services	“I've got God”	1 (3.3%)	1 (3.3%)
Survivor not interested	Participants shared that they/the survivor was not interested in receiving services	“Just not something I am into.”	1 (3.3%)	1 (3.3%)
Lack of perceived benefit	Participants described that services had not benefited them in the past	“Haven't seemed to help in past”	1 (3.3%)	0
Not aware of how services could help	Participants shared that they were not aware of or had not thought of using mental health services	“Never thought of trying it out”	1 (3.3%)	0
Managing issues on their own	Participants described feeling equipped to manage their mental health concerns independently	“I've been good so far, I know how to deal with my ailments on my own”	1 (3.3%)	0
Other	Participants described other reasons for not needing services, including the survivor's cognitive ability	“Although he struggles with not driving, etc. he doesn't spend too much time on it. Health care is our issue not mental health”	0	2 (6.7%)

ADHD, attention-deficit/hyperactivity disorder.

Note: Responses can be categorized into more than one theme.

Among dyads who both provided open-text responses (n = 47) describing “why” they perceived benefit or “why not,” 15 caregivers and survivors agreed on reasons why the survivor would benefit (Table 5). Five dyads indicated that the child was already in therapy, five endorsed anxiety or mood concerns, two wanted additional support, one pair described cancer-specific concerns, another pair cited survivor's guilt, and one reported concerns related to ADHD and Tourette's syndrome. Seven dyads agreed that the survivor would not benefit from services because the survivor was doing well (e.g., “I think my mental health is really good”) or had good social support. Ten caregiver-survivor dyads agreed the survivor would benefit from services, but expressed different perspectives about “why.”

One caregiver cited “personality changes,” whereas the survivor wanted services for mood concerns. One caregiver stated concerns about the child's learning and thinking specifically, while the child more generally wanted services for “long-term mental side effects from being a cancer survivor.” One caregiver reported the child has PTSD, whereas the child conceptualized their concerns as anxiety. For one dyad, the caregiver wanted additional school support, while the survivor cited the importance and overall benefit of mental health services. Two survivors described wanting additional support in general, while their caregivers cited specific concerns (anxiety and mood). One caregiver shared that the survivor was currently in therapy, while the child reported they benefit from services because they felt as though they were different from others. Finally, one caregiver reported the survivor had anxiety, inattention, and memory issues, while the survivor only reported anxiety concerns.

For the 12 dyads who disagreed on whether the survivor would benefit from services, eight survivors did not perceive a need, while their caregivers cited mood, anxiety (two caregivers), processing cancer experiences, developing a greater awareness of the impact of cancer, ADHD, anger, and grief, respectively. One caregiver did not expand on why they believed the survivor would benefit from services, while the survivor reported wanting to cope on their own. For the three dyads in which the caregiver did not perceive benefit, one survivor described the importance and benefit of services, one reported wanting to change their thought patterns, and one wanted additional support.

Survivor- and caregiver-reported barriers

Adolescents endorsed more barriers related to perceived helpfulness, t(18) = 2.3, p = 0.03, d = 0.54, and effects of services, t(18) = 3.8, p < 0.001, d = 0.88, than their caregivers (Table 6). Emerging adults, t(34) = 2.4, p = 0.02, d = 0.41, endorsed more content barriers than their caregivers. See Tables 7 and 8 for the most common barriers.

Table 6.

Paired Sample t-Tests Examining Differences in the Percentage of Barriers Endorsed by Domain and Total Among Survivors and Caregivers Who Endorsed Need^a

Domain, M (SD)	Number of items	Adolescents (n = 15)	Emerging adults (n = 40)	Caregiver (n = 63)	Caregiver of an adolescent	Caregiver of an emerging adult
Content of services (e.g., feel out of place)	6	40.4% (35.2%)^b	33.8% (29.3%)	20.0% (27.4%)	p = 0.07, d = 0.45	p = 0.02, d = 0.41
Perceived helpfulness (e.g., services would not help)	8	24.3% (17.9%)	14.3% (15.5%)	12.5% (18.0%)	p = 0.03, d = 0.53	p = 0.36, d = 0.16
Provider (e.g., may not like provider)	4	23.7% (22.8%)	17.9% (23.9%)	13.4% (20.4%)	p = 0.26, d = 0.27	p = 0.19, d = 0.22
Effects (e.g., afraid of what friends and family would say)	8	20.4% (17.8%)	10.7% (12.9%)	4.6% (11.5%)	p = 0.001, d = 0.88	p = 0.07, d = 0.32
Financial barriers (e.g., services cost too much)	5	—	—	26.2% (26.6%)	—	—
Access (e.g., did not know where to go)	14	18.8% (26.0%)	12.6% (19.5%)	15.5% (18.5%)	p = 0.33, d = 0.23	p = 0.31, d = 0.17
Lack of need (e.g., need for services)	4	38.2% (25.5%)	35.7% (32.2%)	36.6% (29.8%)	p = 0.50, d = 0.16	p = 0.63, d = 0.08
Total Barriers	44^*	25.2% (17.5%)	18.5% (13.7%)	14.9% (14.8%)	p = 0.11, d = 0.39	p = 0.90, d = 0.022

N = 54, representing completed dyad pairs in which survivor or caregiver endorsed significant need either perceived benefit using the single-item assessment or subclinically elevated SDQ scores; ^baverage percentage of barriers endorsed of the total number of barriers in that domain; ^*total barriers does not include financial domain; Bolded text indicates a significant contrast.

Table 7.

Ten Most Commonly Endorsed Barriers Among Adolescents and Emerging Adult Survivors Who Endorsed a Current Need for Services

Barrier	Domain	Total (n = 55)	Adolescents (n = 15)	Emerging adults (n = 40)
You would not feel comfortable talking about your problems with a stranger or did not want to burden others with your problems	Content	32 (58.2%)	9 (60.0%)	23 (57.5%)
You could handle your problems on your own	Lack of need	32 (58.2%)	8 (53.3%)	24 (60.0%)
Services would not help	Perceived helpfulness	27 (47.4%)	9 (60.0%)	18 (45.0%)
You may not like or trust the provider who offered the services	Provider	25 (43.9%)	10 (66.7%)	15 (37.5%)
Your problem was not a mental health problem	Lack of need	24 (43.6%)	6 (40.0%)	18 (45.0%)
You did not know what would happen in services	Content	23 (40.4%)	7 (46.7%)	16 (40.0%)
You were afraid of what your friends or family would say	Effects	21 (38.6%)	8 (53.3%)	13 (32.5%)
Your problems were not so serious	Lack of need	20 (36.4%)	2 (13.3%)	18 (45.0%)
You did not want to go	Content	20 (36.4%)	7 (46.7%)	13 (32.5%)
You would feel out of place in services	Content	19 (34.5%)	7 (46.7%)	12 (32.5%)
Receiving services might mean too many people get involved in the family	Effects	19 (34.5%)	7 (46.7%)	12 (32.5%)

Table 8.

Ten Most Commonly Endorsed Barriers Among Caregivers Who Endorsed a Current Need for Services

Barrier	Domain	Caregivers endorsed (n = 63)
Services were too expensive	Financial	36 (57.1%)
Insurance benefits were exhausted, or services were not covered	Financial	26 (41.3%)
You did not have enough time to go to services, or they would not fit into your schedule	Access	22 (34.9%)
Your child's problem was not a mental health problem	Lack of need	20 (31.7%)
The child's problem was not so serious	Lack of need	20 (31.7%)
You could handle the child's problems on your own	Lack of need	20 (31.7%)
Your child would feel out of place in services	Content	19 (30.2%)
You may not like or trust the provider who offered the service	Provider	19 (30.2%)
You did not know where to go for services	Access	19 (30.2%)
You may have to wait a long time for an appointment	Access	19 (30.2%)

Discussion

Most caregivers and survivors endorsed need for mental health services. Participants described needing mental health services for mood, anxiety, ADHD, cancer-specific concerns (e.g., late effects), and general life adjustment. Female and nonrural survivor were more likely to endorse need than their male and rural counter. Females also reported more barriers than males. Agreement about survivors' perceived need for mental health services was high (76%).

Most survivors (63%) and caregivers (71%) endorsed the PBTS would benefit from mental health services. It is possible that neurocognitive late effects influenced survivors' perceptions about their need for mental health treatment, with some research suggesting that survivors may underreport their symptomology.³⁴ Yet, high rates of agreement between survivors and caregivers suggest that survivors have awareness of their mental health challenges. In addition, in open text responses, many dyads conceptualized their mental health challenges or lack thereof similarly.

However, notable differences were present for some dyads. Caregivers were more likely to report specific concerns (e.g., mood, anxiety, ADHD), while survivors were more likely to describe wanting additional support more generally or not needing services. Our results highlight the continued importance of multi-informant data. Although some caregivers endorsed internalizing problems for their survivor, survivors' internal experiences may be more challenging to observe and accurately report from the caregiver perspective. Caregiver report is also not without bias, such that caregiver's own distress may influence their ratings of survivors distress.³⁵

Despite similar conceptualizations of mental health challenges, AEA endorsed more barriers to mental health service use than their caregivers. Emerging adults were more likely than caregivers to endorse concerns about the content of services, and adolescents were more likely to worry about the helpfulness and potential negative effects of services. Several of the most common barriers among AEA related to negative perceptions of services, including feeling uncomfortable, perceiving that services would not help, concerns about trusting the service providers, fear of others' perception, and feeling out of place in services. These barriers may reflect internalized societal stigma against mental health services.

Although we only examined barriers among those who “perceived need” based on SDQ scores or the single-item assessment, caregivers and survivors described barriers related to a lack of perceived need for services. This domain of barriers encompasses items related to attitudes surrounding help-seeking and a lack of recognition or minimization of mental health (e.g., “my problem is not a mental health problem,” “my problems were not so serious”). This discrepancy may reflect differences in assessment methods, in which families may have perceived that services could be beneficial and therefore answered yes to the perceived benefit question, but did not believe the survivor truly “needed” services. Future studies could interview families to gain a more in-depth understanding of perceptions of mental health service need.

In addition, our finding that 58% of AEA endorsed that they “could handle their problems on their own” adds to research suggesting some AEA may prefer to rely on themselves rather than seeking external help for mental health challenges.¹⁵ Self-reliance may be particularly salient for AEA PBTS, as cancer survivors qualitatively describe developing a sense of independence and strength based on their experiences with treatment and recovery.^36,37 Depending on the survivor, these attitudes may serve as resilience factors or may hinder help-seeking behavior.

While both caregivers and survivors commonly reported concerns related to a lack of perceived need, caregivers also endorsed financial and access barriers. Caregivers described concerns about the cost of services, insurance coverage, scheduling, lack of knowledge about service locations/providers, and wait times. Our findings highlight the significant financial burden of brain tumor treatment and survivorship, which extends to mental health care.^38,39 Future studies should assess survivors' perceptions of financial and insurance barriers, particularly those who have their own insurance coverage.

As families were recruited between June 2020 and April 2022, the COVID-19 pandemic increased mental health concerns⁴⁰ and barriers to care,⁴¹ likely impacting the results of our study. However, since the AEA in this study were around 9 years out from brain tumor treatment on average, they may have had experience with pursuing mental health services before the pandemic. It will be important for future studies to examine the long-term impact of the COVID-19 pandemic on AEA mental health and barriers to care.

These findings should be interpreted in the context of the study's limitations. We asked only one question to assess survivors' and caregivers' perceptions of mental health service benefit. We did not first establish a shared understanding of “mental health services”; therefore, we do not know whether participants interpreted this question to mean family-based therapy, outpatient individual therapy, therapy specifically related to risk and resilience from their cancer diagnosis and treatment, or neuropsychological services. Future research could assess what type of services families would find helpful and provide psychoeducation on services specifically tailored to the families' needs. We did not assess past or current behavioral or mental health service use or how barriers to care impacted service use.

We also do not know how the use of mental health services impacted families' responses to the “perceived benefit” question, although several families who endorsed benefit described in open text responses that the survivor was receiving services. In addition, survivors' perceptions that they do not require services or that services would not be helpful may be related to a number of reasons, including late effects, endorsement of difficulties on the SDQ without also perceiving need for services, and current receipt of services. Relatedly, survivors may not believe that mental health services can support difficulties associated with cognitive late effects, including challenges with memory, executive functioning deficits, and slowed processing speed.^6–9

Survivors who participated alone were older than survivors in dyads and survivors of caregivers participating alone; however, participation type was not associated with other demographic or outcome variables. Still, survivors participating alone may have had greater independence, which may have impacted their needs and perceptions of barriers. In addition, we were limited in racial, ethnic, and linguistic diversity. Barriers to care and perception of need may differ for racially and ethnically minoritized families and families with limited English language proficiency, such as previous experiences of discrimination and language barriers.^42,43 Our study enrolled families who were currently participating in survivorship care and may face fewer barriers to health care use in general. Finally, our sample was heterogeneous in tumor type, age, and geographical locations.

Clinical Implications

There is robust literature suggesting the importance of psychosocial screening in survivorship clinics to increase identification of mental health concerns in survivors of pediatric cancer.⁴⁴ Clinicians should discuss mental health and neurobehavioral late effects with survivors and families early in treatment and survivorship and screen for psychosocial functioning during all clinic visits. Given the prevalence of negative perceptions of mental health services among AEA in our study and its strong association with help-seeking behaviors,¹⁵ clinicians can address misconceptions about mental health services or provide survivors with options for tiered support (e.g., support groups, outpatient therapy, school counselor).⁴⁵

Research suggests that greater awareness and knowledge of mental health service can increase help-seeking behaviors and reduce negative perceptions.^15,46 Clinicians might also consider explicitly discussing logistical barriers with survivors and caregivers (e.g., financial, insurance coverage, transportation). Online psychosocial interventions may be an effective method to reduce barriers to accessing services (e.g., scheduling, transportation) and reduce stigma.^47–49 To address financial barriers, practice and policy changes are needed to decrease the costs of mental health care and expand access to services. Furthermore, many parents of PBTS continue to serve as primary caregivers in young adulthood, which includes scaffolding their child's independence with adaptive and coping skills.⁵⁰ In addition, family functioning is important to survivor quality of life and psychosocial outcomes.^51–53 Thus, involving caregivers in mental health care models is important for empowering the family system to support the survivor's well-being.

Conclusion

Caregivers and survivors commonly described need for mental health services related to mood and emotion regulation, anxiety, neurobehavioral late effects, and general life adjustment. Both groups commonly reported obstacles to accessing mental health services such as perceived lack of need, concerns regarding the effectiveness and usefulness of services, and limited knowledge about the content of services.

Survivors were more likely to report barriers related to the content, effects, and perceived helpfulness of services than their caregivers. Future research should seek to understand how differences in survivors' and caregivers' perceptions of the PBTS' need and barriers to services impact service receipt. Psychosocial screening, psychoeducation, and tailored psychosocial interventions can support PBTS and their families in understanding how the diagnosis and treatment of the brain tumor may have impacted mental health and support well-being. By elucidating the barriers to seeking mental health care, accessible and tailored psychosocial care can be offered to improve the quality of life for AEA survivors of pediatric brain tumors.

Footnotes

Acknowledgments

Research reported in this publication was supported by the National Institute of General Medical Sciences of the National Institutes of Health under Award Number 2U54GM104942–07. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health. We would also like to acknowledge the survivors and caregivers who participated in this study.

Authors' Contribution

All authors contributed to the study conception and design. Data collection and analysis were performed by A.F. and J.P. Study conceptualization was done by A.F., E.M., and S.W. Data curation was completed by all co-authors. Article conceptualization and efforts to draft the article were led by A.F., with all authors actively participating in the writing and editing of the article.

Author Disclosure Statement

No competing financial interests exist.

Funding Information

National Institute of General Medical Sciences, National Institutes of Health, Grant number: 2U54GM104942-07.

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