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A Mixed-Methods Evaluation of the Experience of Emerging Young Adult Care Partners

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Title: A Mixed-Methods Evaluation of the Experience of Emerging Young Adult Care Partners
Language: English
Authors: Marziliano, Allison, Applebaum, Allison, Siess, Samantha, Moyer, Anne
Source: Psychology in the Schools. Jan 2023 60(1):143-161.
Availability: Wiley. Available from: John Wiley & Sons, Inc. 111 River Street, Hoboken, NJ 07030. Tel: 800-835-6770; e-mail: cs-journals@wiley.com; Web site: https://www.wiley.com/en-us
Peer Reviewed: Y
Page Count: 19
Publication Date: 2023
Sponsoring Agency: National Institutes of Health (NIH) (DHHS)
Contract Number: P30CA08748
Document Type: Journal Articles
Reports - Research
Education Level: Higher Education
Postsecondary Education
Descriptors: Undergraduate Students, Young Adults, Peer Relationship, Social Support Groups, Control Groups, Academic Achievement, Learner Engagement, Employment, Health Behavior, Daily Living Skills, Mental Health, Well Being, Attitudes, Depression (Psychology), Anxiety, Student Experience
DOI: 10.1002/pits.22781
ISSN: 0033-3085
1520-6807
Abstract: There is limited literature on emerging young adult (EYA) care partners, despite a recent rise in interest in this group. The purpose of this study is to compare EYA care partners and their non-care partner peers in the domains of academic achievement and engagement, employment, health-related behaviors and self-care, and mental health and respite, as well as to assess EYA care partners' burden and potential for positive psychosocial sequelae and life changes as a result of their role. Further, within EYA care partners, we examine the relationship between mental health variables and care partner-relevant variables. Two hundred undergraduates (100 care partners and 100 non-care partners) completed measures of academic achievement and engagement (grade point average and credit load), employment (number of paid positions held and number of hours worked per week), health-related behavior/self-care (visits to the dentist, primary care physician, optometrist, diet healthfulness, exercise, cigarette smoking, and drinks per week) and mental health/respite (depression, anxiety, loneliness, drinking, social support, peer pressure, vacation recency, and frequency). Care partners completed measures of spiritual well-being, burden, meaning, and benefit-finding, as well as provided qualitative feedback on how caregiving changed their lives. EYA care partners and non-care partners did not differ on any variables examined except for the number of jobs held, as EYA care partners held more paid jobs than EYA non-care partners. EYA care partners showed moderate burden and high levels of finding meaning/benefit, the latter of which was supported by the themes that emerged from their qualitative data. Within EYA care partners, we found that depression and anxiety (mental health variables) were significantly related to spiritual well-being, burden, benefit finding, and finding meaning through caregiving (care partner-relevant variables). It is encouraging that the care partner and non-care partner groups were similar in domains critical for this age group, such as academic achievement and engagement.
Abstractor: As Provided
Entry Date: 2022
Accession Number: EJ1358116
Database: ERIC
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  Value: <anid>AN0160719029;pis01jan.23;2022Dec13.07:22;v2.2.500</anid> <title id="AN0160719029-1">A mixed‐methods evaluation of the experience of emerging young adult care partners </title> <p>There is limited literature on emerging young adult (EYA) care partners, despite a recent rise in interest in this group. The purpose of this study is to compare EYA care partners and their non‐care partner peers in the domains of academic achievement and engagement, employment, health‐related behaviors and self‐care, and mental health and respite, as well as to assess EYA care partners' burden and potential for positive psychosocial sequelae and life changes as a result of their role. Further, within EYA care partners, we examine the relationship between mental health variables and care partner‐relevant variables. Two hundred undergraduates (100 care partners and 100 non‐care partners) completed measures of academic achievement and engagement (grade point average and credit load), employment (number of paid positions held and number of hours worked per week), health‐related behavior/self‐care (visits to the dentist, primary care physician, optometrist, diet healthfulness, exercise, cigarette smoking, and drinks per week) and mental health/respite (depression, anxiety, loneliness, drinking, social support, peer pressure, vacation recency, and frequency). Care partners completed measures of spiritual well‐being, burden, meaning, and benefit‐finding, as well as provided qualitative feedback on how caregiving changed their lives. EYA care partners and non‐care partners did not differ on any variables examined except for the number of jobs held, as EYA care partners held more paid jobs than EYA non‐care partners. EYA care partners showed moderate burden and high levels of finding meaning/benefit, the latter of which was supported by the themes that emerged from their qualitative data. Within EYA care partners, we found that depression and anxiety (mental health variables) were significantly related to spiritual well‐being, burden, benefit finding, and finding meaning through caregiving (care partner‐relevant variables). It is encouraging that the care partner and non‐care partner groups were similar in domains critical for this age group, such as academic achievement and engagement.</p> <p>Practitioner points: Emerging Young Adult (EYA) care partners and non‐care partners did not differ on any variables examined except for the number of jobs held, as EYA care partners held more paid jobs than EYA non‐care partners.EYA care partners showed moderate burden and high levels of finding meaning/benefit.Within EYA care partners, depression and anxiety (mental health variables) were significantly related to spiritual well‐being, burden, benefit finding, and finding meaning through caregiving (care partner‐relevant variables).</p> <p>Keywords: care partner; college; emerging young adult; EYA care partner; student</p> <hd id="AN0160719029-2">INTRODUCTION</hd> <p>A care partner (also referred to as a family caregiver or carer) provides unpaid care to a loved one with special needs, including physical and mental illness or disability. The number of care partners in the United States is rapidly increasing. According to the report, Caregiving in the United States 2020, presented by the National Alliance for Caregiving (NAC) and the American Association of Retired Persons (AARP), 47.9 million adults are care partners to other adults. This represents a sharp increase from 2015, in which there were 39.8 million adults assuming the role of care partner to other adults (NAC and AARP, [<reflink idref="bib32" id="ref1">32</reflink>]).</p> <p>Care partners of loved ones with illness experience a range of negative outcomes in the physical, psychological, social, and practical domains. These include elevated levels of depression and anxiety, guilt, issues with their sense of identity, inability to engage in self‐care, loneliness, diminished social relationships, decreases in life satisfaction, limited time and finances, reductions in work productivity, disturbed sleep, and compromises to their own physical health (Applebaum et al., [<reflink idref="bib4" id="ref2">4</reflink>]; Gray et al., [<reflink idref="bib19" id="ref3">19</reflink>]; Junkins et al., [<reflink idref="bib22" id="ref4">22</reflink>]; Roth et al., [<reflink idref="bib38" id="ref5">38</reflink>]; Schulz & Beach, [<reflink idref="bib42" id="ref6">42</reflink>]).</p> <p>Much of what we know about care partners' experience is based on the abundance of research on adult care partners, or those who assume the care partnering role later in their life. By contrast, there is a dearth of research on care partners who assume the care partnering role when they are between the ages of 18 and 24 years old, coined the emerging young adult (EYA) population. The lack of research on EYA care partners is even more surprising given estimates that EYAs make up a substantial proportion, between 12% and 18%, of the total number of care partners (Levine et al., [<reflink idref="bib24" id="ref7">24</reflink>]). More recently, the Caregiving in the U.S. Study (NAC and AARP, [<reflink idref="bib32" id="ref8">32</reflink>]) estimated that 11% of Americans caring for older adults are attending school as either part‐ or full‐time students, which translates to approximately 5 million student care partners, most of whom are likely EYAs, enrolled in trade schools, colleges, or universities in the United States.</p> <p>A study conducted by AARP ([<reflink idref="bib1" id="ref9">1</reflink>]) on 400 student care partners (including EYAs) during June 2020, the height of the COVID‐19 pandemic in many parts of our country, highlighted the negative effects of care partnering. Findings showed that 7 in 10 student care partners reported caring for a loved one negatively impacted their academic success, 1 in 3 has had difficulty meeting deadlines or attendance requirements, and 6 in 10 student care partners reported care partnering affected their ability to pay for school. Further, half of the student care partners experienced emotional stress due to their role, over a third (35%) reported that they had a late assignment, and 34% reported missing a class. Of the 43% of student care partners who keep their care partner role private, more than half said their institution would not understand their situation and nearly one quarter said they feel discriminated against by instructors, peers, or both. Although this study is extremely illuminating, it does not include a non‐care partner comparison group, and only 36% of the sample was in the EYA age range of 18−24 years old, a particularly developmentally fragile period of their lives.</p> <p>One study showed that EYA care partners reported that they had less time for family and friends (36.4%) and gave up hobbies and social activities (43.1%; Levine et al., [<reflink idref="bib24" id="ref10">24</reflink>]). These care partners used multiple coping strategies, including prayer (57.4%), talking to family and friends (54.1%), using the Internet (34.5%), and exercise (40%). Lastly, they identified a number of areas of unmet needs, including difficulty obtaining: medical help for the care recipient (16.8%), and nonmedical help such as home care aids or other assistance (72.1%). Although important, this study was purely descriptive and did not include a non‐care partner comparison group.</p> <p>Another study (Greene et al., [<reflink idref="bib20" id="ref11">20</reflink>]) of 353 undergraduate students, comparing those who were past or current care partners to non‐care partners, found that the former group had significantly higher levels of depression and anxiety. However, there were no other significant group differences in self‐esteem and coping. Other areas particularly relevant for EYAs, such as academics, were not examined in this study.</p> <p>Other data reports on in‐depth interviews with three EYA care partners, ages 18, 20, and 24, living with their mothers undergoing treatment for breast cancer. Findings indicate these care partners were consumed by thoughts of their mothers' illness, leading to difficulty concentrating in class. Additionally, the young care partners reported insomnia, fatigue, and missed classes. Nevertheless, the picture was not completely bleak. They also reported grades as good as, if not better, than before they were care partners, as they had given up social activities and stayed home more to care for their mothers, leaving them more time to study (Mancini et al., [<reflink idref="bib29" id="ref12">29</reflink>]). Although this study had a small and homogenous sample, it provides important information regarding the potential for positive changes as a result of assuming the care partnering role. Other research (McLaughlin et al., [<reflink idref="bib31" id="ref13">31</reflink>]) showed that young adult care partners ages 21−40 reported more financial strain, but greater positive feelings toward care partnering when compared to middle‐aged (ages 41−60) and older‐adult (ages 61 and older) care partners. This study, although important, focused on large age groups spanning nearly 20 years, and cannot offer insight into the unique experience of EYAs between 18 and 24 years old.</p> <hd id="AN0160719029-3">Gaps in the literature</hd> <p>Although these studies are critically important, they are few and fail to provide a comprehensive picture of the unique experience of EYA care partners, a group that is in a fragile developmental period of their lives during which they are often gaining their independence for the first time and beginning to forge their own path. First, many studies include care partners that differ in age by 20 years within the same group, although their experiences are varied. Second, a quantitative comparison of academic achievement and engagement between EYA care partners and non‐care partners is lacking. Third, comparisons between EYA care partners and non‐care partners on relevant psychosocial outcomes beyond depression and anxiety, such as loneliness, social support, peer pressure, and drinking motives, remain largely unexamined. Fourth, there has been no quantitative evaluation of the potential for EYAs to experience positive psychosocial sequelae in response to their caregiving role. Fifth, there has been no research on the relationship between mental health variables and care partner‐relevant variables within the EYA care partner population. Sixth, the qualitative assessment of EYA care partners has been limited due to its small, homogenous sample of three daughters of women with breast cancer; studies with samples that are both larger and more diverse would allow for thematic analysis.</p> <hd id="AN0160719029-4">Need to prioritize EYA care partner research</hd> <p>An in‐depth, mixed‐methods investigation of the challenges and potential for positive changes experienced by EYA care partners, specifically between the ages of 18 and 24 years old, is a timely endeavor. Attention paid toward this group is on the rise, even more so in the context of the COVID‐19 pandemic. The Chronicle of Higher Education ([<reflink idref="bib44" id="ref14">44</reflink>]) offers virtual forums for those interested in learning about EYA care partner needs and how colleges can help better support this group during the pandemic and beyond. The American Psychological Association (APA, [<reflink idref="bib3" id="ref15">3</reflink>]) released an updated and expanded version of the Family Caregiver Briefcase, an online resource that provides useful information to guide healthcare professionals on ways in which to assist family care partners (APA, [<reflink idref="bib3" id="ref16">3</reflink>]). This updated version was specifically adapted to include aids and information for young care partners, corroborating that having young individuals as care partners is inevitable; although prevention is not an option, research and intervention ought to be prioritized (Lu, [<reflink idref="bib27" id="ref17">27</reflink>]). Furthermore, organizations, such as caring.com, are offering scholarship opportunities for student care partners (Scholarships for Student Caregivers, [<reflink idref="bib41" id="ref18">41</reflink>]), indicating their recognition of the need to support these EYAs. The organization Cancercare ([<reflink idref="bib10" id="ref19">10</reflink>]), which offers counseling, support groups, education, and financial assistance, also features a page on its website dedicated to Young Adults as Care partners.</p> <p>Several organizations highlight the increasingly important role of EYA care partners by illustrating their experience on their websites. Family Caregiver Alliance ([<reflink idref="bib15" id="ref20">15</reflink>]) offers a page specifically to share the story of one 20‐year‐old care partner of her single mom diagnosed with metastatic small cell lung cancer. The Chronicle of Higher Education ([<reflink idref="bib43" id="ref21">43</reflink>]) featured a story of a fourth‐year biology major planning a career in medicine while caring for her mother with severe mental illness.</p> <hd id="AN0160719029-5">Study purpose</hd> <p>In sum, there is an abundance of prior literature on adult care partners, contrasted with minimal attention paid to EYA care partners. Coupled with the growing interest in the psychosocial challenges and triumphs facing EYA care partners demonstrated by major organizations, such as the APA, the next logical step is a study illuminating the unique experience of EYA care partners.</p> <p>Our study fills this gap by: (<reflink idref="bib1" id="ref22">1</reflink>) quantitatively comparing EYA care partners and their EYA non‐care partnering peers in domains of academic achievement and engagement, employment, health‐related behaviors and self‐care, and mental health and respite; (<reflink idref="bib2" id="ref23">2</reflink>) examining EYA care partners' levels of positive psychosocial sequelae (meaning, benefit finding, spiritual well‐being) and care partner burden using quantitative assessments; (<reflink idref="bib3" id="ref24">3</reflink>) qualitatively identifying ways in which the care partnering experience has changed care partners' lives; and (<reflink idref="bib4" id="ref25">4</reflink>) within EYA care partners, examining the relationship between mental health variables and care partner relevant variables using quantitative assessments.</p> <hd id="AN0160719029-6">METHOD</hd> <p></p> <hd id="AN0160719029-7">Study sample</hd> <p>To be eligible, participants had to meet the following criteria: (<reflink idref="bib1" id="ref26">1</reflink>) be undergraduate students at a large public university in which this study was being performed; (<reflink idref="bib2" id="ref27">2</reflink>) be between the ages of 18 and 24 years old; (<reflink idref="bib3" id="ref28">3</reflink>) have a computer and Internet access; and (<reflink idref="bib4" id="ref29">4</reflink>) provide a response to a single‐item question ("Do you currently provide significant assistance to a relative or household member who needs help because of a physical or mental illness, disability, frailty associated with aging, substance misuse or other conditions? That is, do your responsibilities currently include one or more of the following: personal care, medical care, household management, supervision, language translation in medical settings, emotional support, or parenting siblings?") to determine their care partnering status (Barber & Siskowski, [<reflink idref="bib5" id="ref30">5</reflink>]). Individuals were placed in the EYA care partner group (if they responded "yes") or the EYA non‐care partner group (if they responded "no").</p> <hd id="AN0160719029-8">Procedure</hd> <p>This study was approved by the Institutional Review Board of a public university in the Northeastern United States. The study coordinator solicited potential participants in person, with flyers, and through the Psychology Department Subject Pool during the fall 2013 and spring 2014 semesters. In‐person contact was through approaches in populated areas on campus. Non‐care partners received $15 and care partners received $20, as their questionnaire was longer. Subject Pool members participated in exchange for course credit. A secure Internet questionnaire platform, Qualtrics (Online Survey Software, [<reflink idref="bib33" id="ref31">33</reflink>]), was used to administer the measures. Participants provided consent by continuing past the consent form, which was the first page of the survey.</p> <hd id="AN0160719029-9">Assessment plan</hd> <p>This study followed a concurrent mixed‐methods design with a primary focus on the quantitative approach (Creswell & Plano Clark, [<reflink idref="bib14" id="ref32">14</reflink>]). We administered a one‐time questionnaire consisting of standardized quantitative measures, questions developed specifically for the study by the study team, and an open‐ended question. All questionnaires for this study were self‐report. Both the non‐care partner and care partner groups completed measures assessing their functioning in the following domains.</p> <hd id="AN0160719029-10">Demographics</hd> <p>Data on participants' age, race, gender, full‐ or part‐time student status, residence on or off campus, and college class were collected.</p> <hd id="AN0160719029-11">Academic achievement and engagement</hd> <p>To measure academic achievement and engagement, we asked the questions: (<reflink idref="bib1" id="ref33">1</reflink>) "What is your current grade point average (GPA)?"; and (<reflink idref="bib2" id="ref34">2</reflink>) "What is your current credit load this term?"</p> <hd id="AN0160719029-12">Employment</hd> <p>To measure employment, we utilized two quantitative questions: (<reflink idref="bib1" id="ref35">1</reflink>) "Aside from attending college, on average, about how many hours per week are you employed at a paid position?," and (<reflink idref="bib2" id="ref36">2</reflink>) "If you are employed at a paid position, how many different paid positions do you currently have?"</p> <hd id="AN0160719029-13">Health‐related behavior/self‐care</hd> <p>To measure health‐related behavior/self‐care, the following questions were used: on well‐visits to the dentist ("have you had a routine dental check‐up/cleaning in the past 6 months?" Scale: <emph>yes</emph> or <emph>no</emph>); primary care physician ("Have you had a well visit/check up with your primary care physician in the past 12 months?" Scale: <emph>yes</emph> or <emph>no</emph>); optometrist ("Have you had a routine eye exam with your optometrist (eye doctor) in the past 2 years?" Scale: <emph>yes</emph> or <emph>no</emph>); diet ("How would you rate the healthfulness of your overall diet?" on a 5‐point Likert scale ranging from <emph>not at all healthful</emph> to <emph>extremely healthful</emph>); exercising and playing sports ("During a typical week, how many hours do you spend exercising/playing sports?"); smoking behavior ("On average, how many cigarettes do you smoke per day?"); and use of alcohol ("How many standard drinks do you have per week?"). These questions were developed by the study team.</p> <hd id="AN0160719029-14">Mental health/respite</hd> <p>Several measures were used to measure mental health and respite. For depression, the Center for Epidemiologic Studies Depression Scale (CES‐D; Radloff, [<reflink idref="bib37" id="ref37">37</reflink>]) was used. The CES‐D is a 20‐item self‐report screening questionnaire designed to measure depressive symptoms in the general population. For each item, respondents rate how often they have felt the symptom over the past week on a Likert scale ranging from <emph>rarely or none of the time</emph> to <emph>most or all of the time</emph>, 5−7 <emph>days</emph>. Total scores range from 20 to 80, with higher scores indicating greater depressive symptoms. In the original study, the CES‐D scale demonstrated excellent internal consistency: 0.85 in the general population and 0.90 in the clinical population (CES‐D; Radloff, [<reflink idref="bib37" id="ref38">37</reflink>]). Cronbach's <emph>α</emph> for the current sample was.91.</p> <p>For anxiety, the PROMIS (Patient‐Reported Outcomes Measurement Information System) emotional distress–anxiety‐Short Form (PROMIS, [<reflink idref="bib36" id="ref39">36</reflink>]) was used. For each of the items, respondents indicate how often they have felt the symptom over the past 7 days on a scale ranging from <emph>never</emph> to <emph>always</emph>. Symptoms include <emph>tense</emph>, <emph>anxious</emph>, <emph>uneasy</emph>, <emph>overwhelmed</emph>, and <emph>nervous</emph>. Total scores range from 8 to 40, with higher scores indicating more anxiety. The PROMIS anxiety measure has been widely used and has achieved excellent internal consistency ratings of 0.95 in samples of patients with multiple sclerosis (Marrie et al., [<reflink idref="bib30" id="ref40">30</reflink>]) and 0.94 in samples of patients with inflammatory bowel disease (Bernstein et al., [<reflink idref="bib7" id="ref41">7</reflink>]), as well as 0.86 in care partners of civilians with traumatic brain injury and 0.89 in care partners of military personnel with traumatic brain injury (Carlozzi et al., [<reflink idref="bib11" id="ref42">11</reflink>]). Cronbach's <emph>α</emph> for the current sample was.94.</p> <p>For loneliness, the 20‐item UCLA Loneliness Scale (Russell, [<reflink idref="bib39" id="ref43">39</reflink>]) was used. For each item, respondents select how often they feel a certain way on a Likert Scale ranging from <emph>never</emph> to <emph>always</emph>. Sample questions include: "How often do you feel that you are in tune with the people around you?" and "How often do you feel that you lack companionship?" This measure (Russell, [<reflink idref="bib39" id="ref44">39</reflink>]) was developed with responses from a sample of undergraduate students and demonstrated high internal consistency of 0.96. Cronbach's <emph>α</emph> for the current sample was.95.</p> <p>For drinking motives, the Drinking Motives Questionnaire, Adolescent version (DMQ; Cooper, [<reflink idref="bib12" id="ref45">12</reflink>]) was used. This 20‐item measure assesses the frequency of reasons respondents may drink alcohol, such as because it is fun, gives you a pleasant feeling, and cheers you up when you're in a bad mood. For each reason, participants select how often they drink for a particular reason on a 6‐point Likert scale ranging from <emph>never</emph> to <emph>almost always</emph>. The motives fall into four categories: social, coping, enhancement, and peer pressure motives. This measure was built based on responses from a representative household sample of 1243 adolescents. Internal consistency in the original sample for the social, coping, enhancement, and peer pressure subscales were 0.85, 0.84, 0.88, and 0.85, respectively. Cronbach's <emph>α</emph> for the current sample was .95.</p> <p>For social support, the Duke‐UNC Functional Social Support Questionnaire (Duke UNC FSSQ; Broadhead et al., [<reflink idref="bib8" id="ref46">8</reflink>]) was used. This 14‐item measure assesses how often participants receive various forms of support, including love and affection, chances to talk about money matters, invitations to go out and do things, and useful advice about important things in life. Respondents indicate how often they receive such support on a 5‐point Likert scale ranging from <emph>Much less than I would like</emph> to <emph>As much as I would like</emph>. The instrument contains questions in four content areas: quantity, confidant, affective, and instrumental support. Total scores are calculated using an average, with a possible range from 1 to 5, and higher scores indicating a greater degree of social support. This measure was originally designed based on responses from 401 patients in a family medicine clinic, the majority of whom were white, female, married, and under the age of 45 years old. Two scales emerged with internal consistencies of 0.62 and 0.64 for the confidant support and affective support subscales, respectively. Cronbach's <emph>α</emph> for the total score was not provided (Broadhead et al., [<reflink idref="bib8" id="ref47">8</reflink>]). Cronbach's <emph>α</emph> for the current sample was.94.</p> <p>For peer pressure, the 11 Peer Pressure items of the Peer Pressure, Popularity and Conformity Scale (Santor et al., [<reflink idref="bib40" id="ref48">40</reflink>]) were used. Respondents indicate, on a 5‐point Likert scale (1 = <emph>Strongly Disagree</emph>, 2 = <emph>Slightly Disagree</emph>, 3 = <emph>Neutral</emph>, 4 = <emph>Slightly Agree</emph>, 5 = <emph>Strongly Agree</emph>), their level of agreement with such statements as "I give into peer pressure easily," "At times, I've broken rules because others have urged me to do so," and "I often feel pressured to do things I wouldn't normally do." Scores for this subscale range from 11 to 55, with higher scores indicating greater peer pressure. This measure was developed based on responses from 148 adolescent men and women in grades 11−13. For the 11 peer pressure items, internal consistency in the original sample was high, Cronbach's <emph>α</emph> = .84 (Santor et al., [<reflink idref="bib40" id="ref49">40</reflink>]). Cronbach's <emph>α</emph> for the current sample was.83.</p> <p>To measure respite, questions on vacation frequency (How many times within the past 5 years have you been on vacation?) and recency (How many months ago was your last vacation?) were used. These questions were developed by the study team.</p> <p>To attain a more in‐depth understanding of care partnering in EYAs, additional self‐report measures were administered to EYA care partners only, including the following.</p> <hd id="AN0160719029-15">Care partner‐related demographics</hd> <p>Data on a number of people cared for, relationship to care recipient(s), condition of the care recipient(s), hours per week spent care partnering, duration of care partnering in months, residence with relation to the care recipient, care partner status, choice of becoming a care partner, care partner tasks and care recipients' areas of impaired functioning were collected.</p> <hd id="AN0160719029-16">Benefit‐finding</hd> <p>To measure benefit‐finding, the Benefit Finding Scale (BFS; Antoni et al., [<reflink idref="bib2" id="ref50">2</reflink>]; Tomich & Helgeson, [<reflink idref="bib45" id="ref51">45</reflink>]) was used. For this 20‐item measure, respondents indicate, on a 5‐point Likert scale ranging from <emph>not at all</emph> to <emph>very much</emph>, ways in which being a care partner has impacted them, such as "Led me to be more accepting of things" and "Made me realize the importance of planning for my family's future." Total scores on this measure range from 20 to 100 with higher scores indicating greater benefit‐finding. This measure, originally designed in a sample of 364 women with stages 1−3 breast cancer, was modified to apply to benefit finding in care partners. Internal consistency for this care partner sample is excellent, with <emph>α</emph> = .95 (Kim et al., [<reflink idref="bib23" id="ref52">23</reflink>]). Cronbach's <emph>α</emph> for the current sample was.93.</p> <hd id="AN0160719029-17">Meaning</hd> <p>To measure meaning, the provisional meaning subscale of the Finding Meaning through Caregiving Scale (FMCS; Farran et al., [<reflink idref="bib16" id="ref53">16</reflink>]), which emphasizes how care partners find day‐to‐day meaning through care partnering, was used. This 19‐item subscale requires care partners to indicate to what degree they agree with a number of statements regarding their opinions of themselves, their impaired relative, and their care partner experience. Such statements include: "I count my blessings" and "Caring for my relative gives my life a purpose and a sense of meaning." Possible item responses range from <emph>strongly disagree</emph> to <emph>strongly agree</emph>. This measure has a potential range from 19 to 95, with higher scores indicating more meaning. This measure was developed based on two studies: one study of home‐based dementia care partners and one study of spouse care partners. Internal consistency was strong for both samples, 0.92 and 0.88, respectively (Farran et al., [<reflink idref="bib16" id="ref54">16</reflink>]). Cronbach's <emph>α</emph> for the current sample was.93.</p> <hd id="AN0160719029-18">Spiritual well‐being</hd> <p>To measure spiritual well‐being, The Functional Assessment of Chronic Illness Therapy‐Spiritual Well‐being Scale (FACIT‐SWB; Peterman et al., [<reflink idref="bib35" id="ref55">35</reflink>]) was used. On this 12‐item measure, respondents indicate how true several statements have been for them in the past 7 days. Sample statements include "I have a reason for living" and "My life has been productive." Possible response options range from <emph>not at all</emph> to <emph>very much</emph>. This measure ranges from 0 to 48, with higher scores indicating more spiritual well‐being. This measure was developed based on responses from cancer patients; Cronbach's <emph>α</emph> for this sample is.80 (Peterman et al., [<reflink idref="bib35" id="ref56">35</reflink>]). Cronbach's <emph>α</emph> for the current sample was.91.</p> <hd id="AN0160719029-19">Burden</hd> <p>To measure burden, the short 12‐item version of the Zarit Burden Scale (ZBS; Bedard et al., [<reflink idref="bib6" id="ref57">6</reflink>]) was used. Respondents indicate, on a 5‐point Likert scale ranging from <emph>never</emph> to <emph>nearly always</emph>, how often they feel various facets of burden, such as "Your health has suffered because of your involvement with your relative" and "Your social life has suffered because you are caring for your relative." Total scores range from 0 to 48, with higher scores indicating a greater degree of burden. This measure was created based on responses from 413 care partners of cognitively impaired older adults referred to a memory clinic. Cronbach's <emph>α</emph> for this sample was.88 (Bedard et al., [<reflink idref="bib6" id="ref58">6</reflink>]). Cronbach's <emph>α</emph> for the current sample was.90.</p> <hd id="AN0160719029-20">Open‐ended assessment</hd> <p>Participants in the care partner group only also completed a two‐item measure aimed at determining the ways in which the caregiving experience may have changed their lives. This measure consisted of the questions: (<reflink idref="bib1" id="ref59">1</reflink>) "Has caregiving changed your life?" (<emph>yes</emph> or <emph>no</emph>); and (<reflink idref="bib2" id="ref60">2</reflink>) "If yes, how?" (open‐ended). This measure was created by the study team. Of note, as our emphasis in this manuscript is on the quantitative results, our summary of the open‐ended responses is intended to be a description that illuminates the quantitative findings, and frequencies were not calculated.</p> <hd id="AN0160719029-21">Analysis</hd> <p>Categorical variables were summarized using frequencies and percentages; continuous variables were summarized using means and standard deviations. Mean scores for the two groups (EYA care partners and EYA non‐care partners) were compared on all measures using familywise Bonferroni‐corrected <emph>t</emph> tests for continuous variables and <emph>χ</emph><sups>2</sups> tests for categorical variables. For the measures administered to the care partner group only, descriptive statistics were calculated and Pearson correlations were conducted between depression and spiritual well‐being, burden, benefit‐finding, and finding meaning through caregiving, as well as between anxiety and spiritual well‐being, burden, benefit‐finding, and finding meaning through caregiving. For the open‐ended question administered to care partners only (i.e., "If so, [caregiving has changed your life], how?"), data were analyzed using thematic content analysis and a grounded theory approach (Corbin & Strauss, [<reflink idref="bib13" id="ref61">13</reflink>]). Additionally, qualitative results were prepared/reported, wherever possible, in accordance with the Journal Article Reporting Standard for all Qualitative Research Designs (JARS‐Qual; Levitt, [<reflink idref="bib25" id="ref62">25</reflink>]; Levitt et al., [<reflink idref="bib26" id="ref63">26</reflink>]). Specifically, the first author initially reviewed the qualitative responses to this question and created several common themes, which were then discussed/deliberated on among the coauthors. Coauthors also had the opportunity to nominate additional themes and representative quotes were chosen by the lead author.</p> <hd id="AN0160719029-22">Code availability</hd> <p>To conduct our quantitative analyses, we used SPSS (Statistical Package for Social Sciences) software.</p> <hd id="AN0160719029-23">RESULTS</hd> <p></p> <hd id="AN0160719029-24">Overall sample</hd> <p>Two hundred individuals (100 in the EYA care partner group and 100 in the EYA non‐care partner group) participated. The sample was, on average, 19 years old, and mostly female and Asian or Caucasian. Nearly all EYAs were in school full‐time. Most lived on campus, and less than half were upper‐class men (i.e., juniors, seniors or 5th year plus). See Table 1 for demographics and Table 2 for care partner‐specific characteristics.</p> <p>1 Table Participant demographics (N = 200)</p> <p> <ephtml> <table><thead valign="bottom"><tr valign="bottom"><th align="left">Domain</th><th align="char" char=".">Care partner (<italic>n</italic> = 100)</th><th align="char" char=".">Non‐care partner (<italic>n</italic> = 100)</th><th align="char" char="(">Total sample (<italic>N</italic> = 200)</th><th align="left"><italic>p</italic> value</th></tr></thead><tbody valign="top"><tr><td align="left">Age</td><td align="char" char=".">19.39 (1.40)</td><td align="char" char=".">19.55 (1.52)</td><td align="char" char="(">19.47 (1.46)</td><td align="char" char=".">.45</td></tr><tr><td align="left">Ethnicity</td><td align="char" char="." /><td align="char" char="." /><td align="char" char="(" /><td align="char" char=".">.23</td></tr><tr><td align="left">Asian</td><td align="char" char=".">35</td><td align="char" char=".">41</td><td align="char" char="(">76 (38%)</td><td /></tr><tr><td align="left">Caucasian</td><td align="char" char=".">33</td><td align="char" char=".">41</td><td align="char" char="(">74 (37%)</td><td /></tr><tr><td align="left">Other</td><td align="char" char=".">32</td><td align="char" char=".">18</td><td align="char" char="(">50 (25%)</td><td /></tr><tr><td align="left">Gender</td><td /><td /><td /><td align="char" char=".">.32</td></tr><tr><td align="left">Female</td><td align="char" char=".">62</td><td align="char" char=".">70</td><td align="char" char="(">132 (66%)</td><td /></tr><tr><td align="left">Male</td><td align="char" char=".">36</td><td align="char" char=".">30</td><td align="char" char="(">66 (34%)</td><td /></tr><tr><td align="left">Status</td><td /><td /><td /><td align="char" char=".">.56</td></tr><tr><td align="left">Full‐time</td><td align="char" char=".">99</td><td align="char" char=".">98</td><td align="char" char="(">197 (99%)</td><td /></tr><tr><td align="left">Part‐time</td><td align="char" char=".">1</td><td align="char" char=".">2</td><td align="char" char="(">3 (1%)</td><td /></tr><tr><td align="left">Residence</td><td /><td /><td /><td align="char" char=".">.050001</td></tr><tr><td align="left">On campus</td><td align="char" char=".">65</td><td align="char" char=".">77</td><td align="char" char="(">142 (71%)</td><td /></tr><tr><td align="left">Off campus</td><td align="char" char=".">35</td><td align="char" char=".">23</td><td align="char" char="(">58 (29%)</td><td /></tr><tr><td align="left">Year</td><td /><td /><td /><td align="char" char=".">.24</td></tr><tr><td align="left">Freshman</td><td align="char" char=".">29</td><td align="char" char=".">34</td><td align="char" char="(">63 (32%)</td><td /></tr><tr><td align="left">Sophomore</td><td align="char" char=".">27</td><td align="char" char=".">27</td><td align="char" char="(">54 (27%)</td><td /></tr><tr><td align="left">Junior</td><td align="char" char=".">22</td><td align="char" char=".">22</td><td align="char" char="(">44 (22%)</td><td /></tr><tr><td align="left">Senior</td><td align="char" char=".">15</td><td align="char" char=".">17</td><td align="char" char="(">32 (16%)</td><td /></tr><tr><td align="left">5th year plus</td><td align="char" char=".">5</td><td align="char" char=".">0</td><td align="char" char="(">5 (2.5%)</td><td /></tr></tbody></table> </ephtml> </p> <p>1 * Denotes <emph>p</emph> < .05.</p> <p>2 Table Care partnering‐specific characteristics (n = 100)</p> <p> <ephtml> <table><thead valign="bottom"><tr valign="bottom"><th align="left">Characteristics</th><th align="char" char="."><italic>M</italic> (SD) or <italic>n</italic></th></tr></thead><tbody valign="top"><tr><td align="left">Number of people cared for</td><td /></tr><tr><td align="left">One person</td><td align="char" char=".">79</td></tr><tr><td align="left">More than one person</td><td align="char" char=".">21</td></tr><tr><td align="left">Relationship to care recipient</td><td /></tr><tr><td align="left">Mother</td><td align="char" char=".">27</td></tr><tr><td align="left">Grandmother</td><td align="char" char=".">22</td></tr><tr><td align="left">Father</td><td align="char" char=".">12</td></tr><tr><td align="left">Grandfather</td><td align="char" char=".">9</td></tr><tr><td align="left">Siblings</td><td align="char" char=".">13</td></tr><tr><td align="left">Cousins</td><td align="char" char=".">2</td></tr><tr><td align="left">Nieces/nephews</td><td align="char" char=".">3</td></tr><tr><td align="left">Aunts</td><td align="char" char=".">2</td></tr><tr><td align="left">Condition of care recipients</td><td /></tr><tr><td align="left">Mental Illness</td><td align="char" char=".">24</td></tr><tr><td align="left">Orthopedic issues</td><td align="char" char=".">16</td></tr><tr><td align="left">Diabetes</td><td align="char" char=".">14</td></tr><tr><td align="left">Dementia</td><td align="char" char=".">7</td></tr><tr><td align="left">Arthritis</td><td align="char" char=".">6</td></tr><tr><td align="left">Cancer</td><td align="char" char=".">6</td></tr><tr><td align="left">Heart Disease</td><td align="char" char=".">6</td></tr><tr><td align="left">Hypertension</td><td align="char" char=".">5</td></tr><tr><td align="left">Stroke</td><td align="char" char=".">4</td></tr><tr><td align="left">Hours per week care partnering</td><td align="char" char=".">11.49 (15.81)</td></tr><tr><td align="left">Duration of care partnering (months)</td><td align="char" char=".">29.34 (39.55)</td></tr><tr><td align="left">Residence</td><td /></tr><tr><td align="left">On campus</td><td align="char" char=".">62</td></tr><tr><td align="left">Off‐campus (same house as care recipient)</td><td align="char" char=".">21</td></tr><tr><td align="left">Off‐campus (different house as the recipient)</td><td align="char" char=".">17</td></tr><tr><td align="left">Care partner status</td><td /></tr><tr><td align="left">Primary</td><td align="char" char=".">20</td></tr><tr><td align="left">Not primary care partner</td><td align="char" char=".">80</td></tr><tr><td align="left">Care partnering as choice</td><td /></tr><tr><td align="left">Care partner by choice</td><td align="char" char=".">66</td></tr><tr><td align="left">Care partner but not by choice</td><td align="char" char=".">34</td></tr><tr><td align="char" char=".">Tasks</td><td /></tr><tr><td align="left">Providing emotional support</td><td align="char" char=".">62</td></tr><tr><td align="left">Preparing meals</td><td align="char" char=".">53</td></tr><tr><td align="left">Shopping</td><td align="char" char=".">49</td></tr><tr><td align="left">Lifting or moving the patient</td><td align="char" char=".">47</td></tr><tr><td align="left">Laundry</td><td align="char" char=".">43</td></tr><tr><td align="left">Household management</td><td align="char" char=".">40</td></tr><tr><td align="left">Personal care</td><td align="char" char=".">31</td></tr><tr><td align="left">Administering medications</td><td align="char" char=".">29</td></tr><tr><td align="left">Language translation</td><td align="char" char=".">28</td></tr><tr><td align="left">Accompanying the individual to religious/social events</td><td align="char" char=".">27</td></tr><tr><td align="left">Patient supervision</td><td align="char" char=".">26</td></tr><tr><td align="left">Organizing or accompanying patients to doctor visits</td><td align="char" char=".">26</td></tr><tr><td align="left">Parenting siblings</td><td align="char" char=".">16</td></tr><tr><td align="left">Paying bills</td><td align="char" char=".">15</td></tr><tr><td align="left">Dressing</td><td align="char" char=".">15</td></tr><tr><td align="left">Medical Care</td><td align="char" char=".">11</td></tr><tr><td align="left">Toileting</td><td align="char" char=".">9</td></tr><tr><td align="left">Showering</td><td align="char" char=".">9</td></tr><tr><td align="left">Medical decision‐making</td><td align="char" char=".">8</td></tr><tr><td align="left">Area of impaired functioning of the care recipient</td><td /></tr><tr><td align="left">Mobility</td><td align="char" char=".">46</td></tr><tr><td align="left">Pain</td><td align="char" char=".">46</td></tr><tr><td align="left">Appetite/weight issues</td><td align="char" char=".">32</td></tr><tr><td align="left">Agitation</td><td align="char" char=".">30</td></tr><tr><td align="left">Cognition</td><td align="char" char=".">28</td></tr><tr><td align="left">Psychological problems</td><td align="char" char=".">26</td></tr><tr><td align="left">Insomnia/fatigue</td><td align="char" char=".">24</td></tr><tr><td align="left">Medication side effects</td><td align="char" char=".">22</td></tr><tr><td align="left">Shortness of breath</td><td align="char" char=".">20</td></tr><tr><td align="left">Hostility and aggression</td><td align="char" char=".">14</td></tr><tr><td align="left">Gastrointestinal issues</td><td align="char" char=".">14</td></tr><tr><td align="left">Skin problems</td><td align="char" char=".">8</td></tr></tbody></table> </ephtml> </p> <hd id="AN0160719029-25">Differences between care partners and non‐care partners</hd> <p>There were no significant differences between EYA care partners and EYA non‐care partners, except that EYA care partners held more paid positions than EYA non‐care partners (see Table 3).</p> <p>3 Table Study variables in care partners and non‐care partners</p> <p> <ephtml> <table><thead valign="bottom"><tr valign="bottom"><th /><th align="char" char="(">Care partner</th><th align="char" char="(">Non‐care partner</th><th align="char" char="."><italic>t</italic></th><th align="left"><italic>df</italic></th><th align="left"><italic>X</italic>²</th><th align="left"><italic>N</italic></th></tr></thead><tbody valign="top"><tr><td align="left">Domain</td><td /><td /><td /><td /><td /><td /></tr><tr><td align="left">Variable</td><td align="left">M (SD) or %</td><td align="left">M (SD) or %</td><td /><td /><td /><td /></tr><tr><td align="left">Academic achievement and engagement</td><td /><td /><td /><td /><td /><td /></tr><tr><td align="left">GPA</td><td align="char" char="(">3.13 (0.51)</td><td align="char" char="(">3.20 (0.46)</td><td align="char" char=".">−0.97</td><td align="left">164</td><td /><td /></tr><tr><td align="left">Credit load</td><td align="char" char="(">15.45 (2.65)</td><td align="char" char="(">15.46 (2.60)</td><td align="char" char=".">−0.03</td><td align="left">192</td><td /><td /></tr><tr><td align="left">Employment</td><td /><td /><td /><td /><td /><td /></tr><tr><td align="left">No. hours of work/week</td><td align="char" char="(">8.23 (9.20)</td><td align="char" char="(">5.40 (8.45)</td><td align="char" char=".">2.12</td><td align="left">1.72</td><td /><td /></tr><tr><td align="left">No. of paid positions</td><td align="char" char="(">0.83 (0.75)</td><td align="char" char="(">0.52 (0.56)</td><td align="char" char=".">2.690001</td><td align="left">138</td><td /><td /></tr><tr><td align="left">Health‐related behavior/self‐care</td><td /><td /><td /><td /><td /><td /></tr><tr><td align="left">Dentist</td><td align="left">57</td><td align="left">73</td><td /><td /><td align="left">5.63</td><td align="left">200</td></tr><tr><td align="left">PCP</td><td align="left">91</td><td align="left">80</td><td /><td /><td align="left">4.88</td><td align="left">200</td></tr><tr><td align="left">Optometrist</td><td align="left">68</td><td align="left">79</td><td /><td /><td align="left">3.11</td><td align="left">200</td></tr><tr><td align="left">Diet Health (1 = not at all to 5 = extremely)</td><td align="char" char="(">3.38 (0.98)</td><td align="char" char="(">3.39 (1.01)</td><td align="char" char=".">−0.07</td><td align="left">198</td><td /><td /></tr><tr><td align="left">Exercise h/week</td><td align="char" char="(">5.34 (5.24)</td><td align="char" char="(">4.19 (3.81)</td><td align="char" char=".">1.7</td><td align="left">179</td><td /><td /></tr><tr><td align="left">Cigarettes/day</td><td align="char" char="(">0.44 (1.76)</td><td align="char" char="(">0.07 (0.51)</td><td align="char" char=".">1.98</td><td align="left">184</td><td /><td /></tr><tr><td align="left">Drinks/week</td><td align="char" char="(">1.04 (2.34)</td><td align="char" char="(">1.03 (2.16)</td><td align="char" char=".">0.04</td><td align="left">182</td><td /><td /></tr><tr><td align="left">Mental health/respite</td><td /><td /><td /><td /><td /><td /></tr><tr><td align="left">Depression</td><td align="char" char="(">18.66 (11.38)</td><td align="char" char="(">15.77 (10.40)</td><td align="char" char=".">1.87</td><td align="left">197</td><td /><td /></tr><tr><td align="left">Anxiety</td><td align="char" char="(">19.39 (7.55)</td><td align="char" char="(">17.29 (7.09)</td><td align="char" char=".">2.03</td><td align="left">197</td><td /><td /></tr><tr><td align="left">Loneliness</td><td align="char" char="(">44.84 (11.35)</td><td align="char" char="(">42.92 (13.06)</td><td align="char" char=".">1.11</td><td align="left">197</td><td /><td /></tr><tr><td align="left">Drinking motives</td><td align="char" char="(">2.07 (0.91)</td><td align="char" char="(">1.94 (1.00)</td><td align="char" char=".">0.95</td><td align="left">198</td><td /><td /></tr><tr><td align="left">Social support</td><td align="char" char="(">3.55 (0.89)</td><td align="char" char="(">3.69 (0.94)</td><td align="char" char=".">−1.05</td><td align="left">197</td><td /><td /></tr><tr><td align="left">Peer pressure</td><td align="char" char="(">23.00 (8.21)</td><td align="char" char="(">22.02 (7.50)</td><td align="char" char=".">0.88</td><td align="left">198</td><td /><td /></tr><tr><td align="left">Vacation frequency</td><td align="char" char="(">3.21 (3.24)</td><td align="char" char="(">4.74 (3.78)</td><td align="char" char=".">−2.73</td><td align="left">156</td><td /><td /></tr><tr><td align="left">Vacation recency</td><td align="left">12.92 (20.31)</td><td align="char" char="(">9.91 (13.85)</td><td align="char" char=".">1.01</td><td align="left">132</td><td /><td /></tr></tbody></table> </ephtml> </p> <p>2 * Statistic indicates a significant difference at the family‐wise Bonferroni‐corrected alpha level of <emph>p</emph> < .025. This alpha level is calculated based on two measures of "employment."</p> <hd id="AN0160719029-26">Care partner‐specific assessments</hd> <p>Participants in the care partner group were further assessed in four care partner‐related areas, three of which examine positive changes as a result of assuming the care partnering role. These are: finding meaning through caregiving (<emph>M</emph> = 77.25; SD = 10.97); benefit finding (<emph>M</emph> = 70.97; SD = 15.46); and spiritual well‐being (<emph>M</emph> = 28.16; SD = 9.94). Additionally, the mean level of care partner burden for EYA care partners was 15.33 (SD = 9.16).</p> <p>Within care partners, we found that depression was significantly related to spiritual well‐being (<emph>r</emph> = −.504, <emph>p</emph> = .000), burden (<emph>r</emph> = .412, <emph>p</emph> = .000), benefit finding (<emph>r</emph> = −.267, <emph>p</emph> = .008), and finding meaning through caregiving (<emph>r</emph> = −.349, <emph>p</emph> = .000). Additionally, we found that anxiety was significantly related to spiritual well‐being (<emph>r</emph> = −.485, <emph>p</emph> = .000), burden (<emph>r</emph> = .418, <emph>p</emph> = .000), benefit finding (<emph>r</emph> = −.212, <emph>p</emph> = .036) and finding meaning through caregiving (<emph>r</emph> = −.229, <emph>p</emph> = .023).</p> <hd id="AN0160719029-27">Open‐ended assessment</hd> <p>In response to the question, "has caregiving changed your life?," the majority (74%) stated that it had, and when asked "how?" several themes, the majority of which indicated positive change, emerged among the responses (see Table 4). Common themes were positive character change, growth and learning, increased awareness, appreciation, and sense of responsibility. More specifically, EYA care partners who believed their lives were changed by the care partner experience reported changes in themselves and their thinking: that they were more accepting of that which they cannot change, that they were stronger, that their eyes were opened up to the harsh realities of life, and that they were more appreciative of the good in life.</p> <p>4 Table Themes and quotations</p> <p> <ephtml> <table><thead valign="bottom"><tr valign="bottom"><th align="left">Theme</th><th align="left">Quotation</th></tr></thead><tbody valign="top"><tr><td align="left">Character change</td><td align="left">"Caregiving has taught me to accept things I cannot change."</td></tr><tr><td /><td align="left">"It made me become a stronger person."</td></tr><tr><td /><td align="left">"I wouldn't be the person I am today if I wasn't a caregiver."</td></tr><tr><td align="left">Growth/learning</td><td align="left">"Through caregiving, I have learned more about life than I would have without caregiving."</td></tr><tr><td /><td align="left">"It taught me to manage different aspects of my life."</td></tr><tr><td align="left">Increased awareness</td><td align="left">"Caregiving has opened my eyes to life not being a perfect fantasy—that bad things happen to good people."</td></tr><tr><td align="left">Appreciation</td><td align="left">"Knowing that something could happen so quickly makes me want to slow down and care for what I have right now."</td></tr><tr><td align="left">Sense of responsibility</td><td align="left">"I have a greater sense of responsibility. I am in charge of someone staying alive and that is a really big responsibility for someone to have at my age."</td></tr><tr><td align="left">Future impact</td><td align="left">"I have realized how many people need caregiving. I want to be a nurse because of my experience."</td></tr><tr><td align="left">Relationships</td><td align="left">"It made life more difficult and strained the relationship with my mother and the rest of my family."</td></tr></tbody></table> </ephtml> </p> <p>See Table 5 for descriptive information (mean, standard deviation, skew, and kurtosis) on all standardized measures.</p> <p>5 Table Descriptive statistics of standardized measures</p> <p> <ephtml> <table><thead valign="bottom"><tr valign="bottom"><th align="left">Measure</th><th align="char" char="."><italic>M</italic> (SD)</th><th align="left">Range</th><th align="char" char=".">Skew (SE)</th><th align="char" char=".">Kurtosis (SE)</th></tr></thead><tbody valign="top"><tr><td align="left">CES‐D</td><td align="char" char=".">17.22 (10.97)</td><td align="left">0−51</td><td align="char" char=".">0.77 (0.17)</td><td align="char" char=".">0.13 (0.34)</td></tr><tr><td align="left">PROMIS‐Anxiety</td><td align="char" char=".">18.34 (7.38)</td><td align="left">8−38</td><td align="char" char=".">0.50 (0.17)</td><td align="char" char=".">−0.41 (0.34)</td></tr><tr><td align="left">UCLA Loneliness Scale</td><td align="char" char=".">43.87 (12.24)</td><td align="left">21−75</td><td align="char" char=".">0.22 (0.17)</td><td align="char" char=".">−0.61 (0.34)</td></tr><tr><td align="left">DMQ</td><td align="char" char=".">2.01 (0.95)</td><td align="left">1−4.55</td><td align="char" char=".">0.61 (0.17)</td><td align="char" char=".">−0.63 (0.34)</td></tr><tr><td align="left">DUKE UNC FSSQ</td><td align="char" char=".">3.62 (0.92)</td><td align="left">1.5−5</td><td align="char" char=".">−0.36 (0.17)</td><td align="char" char=".">−0.89 (0.34)</td></tr><tr><td align="left">Peer Pressure Items</td><td align="char" char=".">22.51 (7.86)</td><td align="left">11−46</td><td align="char" char=".">0.45 (0.17)</td><td align="char" char=".">−0.58 (0.34)</td></tr><tr><td align="left">BFS0002</td><td align="char" char=".">70.97 (15.46)</td><td align="left">32−100</td><td align="char" char=".">−0.25 (0.24)</td><td align="char" char=".">0.01 (0.48)</td></tr><tr><td align="left">ZBS0002</td><td align="char" char=".">15.33 (9.16)</td><td align="left">0−43</td><td align="char" char=".">0.77 (0.25)</td><td align="char" char=".">0.60 (0.49)</td></tr><tr><td align="left">FMCS0002</td><td align="char" char=".">77.25 (10.97)</td><td align="left">51−95</td><td align="char" char=".">−0.26 (0.24)</td><td align="char" char=".">−0.43 (0.48)</td></tr><tr><td align="left">FACIT‐SWB0002</td><td align="char" char=".">28.16 (9.94)</td><td align="left">3−48</td><td align="char" char=".">−0.26 (0.24)</td><td align="char" char=".">−0.36 (0.48)</td></tr></tbody></table> </ephtml> </p> <ulist> <item>3 Abbreviations: BFS, Benefit Finding Scale; CES‐D, Center for Epidemiologic Studies Depression Scale; DMQ, Drinking Motives Questionnaire, Adolescent version; DUKE UNC FSSQ, Duke‐UNC Functional Social Support Questionnaire; FACIT‐SWB, The Functional Assessment of Chronic Illness Therapy‐Spiritual Well‐being Scale; FMCS, Finding Meaning through Caregiving Scale; PROMIS, Patient‐Reported Outcomes Measurement Information System; ZBS, Zarit Burden Scale.</item> <item>4 a Care partners only.</item> </ulist> <hd id="AN0160719029-28">DISCUSSION</hd> <p>This study found no significant differences between EYA care partners and non‐care partners, with the exception that care partners were more likely to work than non‐care partners. This suggests that EYA care partners and non‐care partners are similar in many areas, and particularly in those domains, such as academic achievement and engagement, that are salient for an EYA population. Further, this study found that, within the EYA care partner sample, poor mental health in the forms of increased depression and anxiety, was related to reports of higher burden and less ability to find meaning, spiritual well‐being, and benefit in the care partner experience.</p> <p>In contrast to the multifaceted and widespread burden often reported by adult care partners, this study suggests that EYA care partners may be most burdened by limited time and finances, whereas their functioning in critical developmental areas, such as academics, is spared. One possible explanation for their elevated number of paid positions, relative to the non‐care partner group, may be that they are working as a result of their families' financial necessities. It is also possible that working provides them with a temporary respite from their care partnering duties, similar to the way school has been cited as an escape for middle/high school‐aged care partners (Gates & Lackey, [<reflink idref="bib17" id="ref64">17</reflink>]). Although not statistically significant, compared to non‐care partners, care partners embarked on fewer vacations or periods of respite within the last 5 years. EYA care partners' decreased frequency of vacation or travel may be the result of their limited time to devote to activities outside of care partnering or their busy work schedules. Still another explanation may be that EYA care partners cannot afford expenses associated with travel and vacation, despite their working, because their money is used to help with family finances. It is possible that this financial burden may represent a precursor to the development of other types of distress, such as psychological burden, that is often seen in adult care partners. Indeed, in other research (Gotze et al., [<reflink idref="bib18" id="ref65">18</reflink>]), financial burden has been linked to exhaustion and feelings of being overloaded, which have, in turn, been associated with increased psychological distress, and poorer quality of life and sense of coherence. Although the difference between the two groups on a measure of depression was not statistically significant in this cross‐sectional study, it is noteworthy that only the EYA care partner group fell above the threshold for moderate to high levels of depressive symptoms; thus, as time passes and these EYAs transition into adults, this gap on the depression measure has the potential to widen.</p> <p>When examining the relationships between mental health variables and care partner‐relevant variables within the care partner sample, all associations were in the expected direction, such that worse depression or anxiety was related to high reports of care partner burden and poorer reports of finding meaning, benefit or spiritual well‐being in their experience. It very well may be that as depression and anxiety rise, care partners' ability to see or draw any positive feelings from their experience is hindered.</p> <hd id="AN0160719029-29">Connecting to the prior literature</hd> <p>The findings from this study contrast with those of a prior study (Greene et al., [<reflink idref="bib20" id="ref66">20</reflink>]) that found that the EYA care partners had significantly higher depression and anxiety than the EYA non‐care partners. Thus, it seems plausible that the inclusion of past care partners (i.e., individuals who have been caring for an extended length of time) in the prior sample may be the driving force behind these differences. At the least, these inconsistent findings warrant further research on depression/anxiety in EYA care partners and non‐care partners.</p> <p>Analyzing the care partner‐specific assessments within the context of the larger adult care partner literature demonstrates that, with regard to the care partnering burden, the emerging picture is inconsistent. Whereas the burden for this EYA sample is not as great as that found in samples of adult care partners for AD patients (Bedard et al., [<reflink idref="bib6" id="ref67">6</reflink>]) and brain injury patients (Higginson et al., [<reflink idref="bib21" id="ref68">21</reflink>]), it was one standard deviation above the burden levels found in samples of care partners for heart failure patients and lung cancer patients (Malik et al., [<reflink idref="bib28" id="ref69">28</reflink>]). One possible explanation for these findings may be that caring for an individual who remains cognitively intact, such as those with cardiovascular disease or cancer often do, presents less of a burden than caring for those with cognitive impairment, as is the case with AD or brain injury patients (Pauley et al., [<reflink idref="bib34" id="ref70">34</reflink>]). Although the care partners in our sample cared for individuals with a range of disorders, AD and dementia care partners were only a small proportion of the entire sample, which may have contributed to the minimal burden endorsed by this group.</p> <p>Although these EYA care partners may endorse lower levels of burden compared to adult care partners for AD patients, they do appear to derive a similar level of meaning from their experience (Farran et al., [<reflink idref="bib16" id="ref71">16</reflink>]). This finding may support the notion that the level of involvement of the care partner is not directly proportional to the level of meaning he or she may experience, thereby allowing care partners who play more of a peripheral role, such as many of those in our EYA sample, to experience the same meaning as those who are primary care partners. Further evidence in support of this point is found in the positive themes that emerged in our participants' qualitative responses to questions regarding how care partnering has changed their lives.</p> <hd id="AN0160719029-30">Practical implications</hd> <p>These results are particularly important for school psychologists and other practitioners embedded in school settings, as these individuals have access to the EYA population. First and foremost, evaluations of EYA students should include questions about the physical and mental health status of immediate family members, to gauge whether students may be assuming the care partnering role at home. These clinicians should acknowledge that the burden associated with the care partnering role falls not only on the adults within the family but also on the EYAs. Wherever appropriate, EYA care partners can be provided with resources, such as those in the Family Caregiver Briefcase (APA, [<reflink idref="bib3" id="ref72">3</reflink>]).</p> <p>Additionally, given this preliminary evidence, specific attention should be placed on the employment status of those who identify as EYA student care partners. Social workers and school psychologists should monitor whether, particularly in families in financial crisis due to disease, EYA student care partners are shouldering financial burden. Furthermore, practitioners in the school setting might monitor EYA student care partners' activities during school breaks and summer to ensure they are engaging in much‐needed respite to re‐energize them. Although over‐working or lack of rest may not immediately strike clinicians as problematic, particularly when compared to serious mental illnesses such as depression and anxiety, evidence suggests that these areas seem to be ones where EYA care partners differ from their counterparts and represent an area for further inquiry.</p> <p>These findings, although illuminating, should be interpreted in the context of the sample characteristics. First, the majority (98%) of this sample indicated full‐time enrollment in an undergraduate degree program, suggesting that these results are only applicable to the EYA care partners for whom the caregiving responsibility is not cumbersome enough to force them to take a leave or withdraw, and perhaps to the particularly resilient EYAs who can balance both caregiving and full‐time studies. Second, the study deliberately utilized a broad definition of the term "care partner" in an effort to capture the full range of caregiving experiences, some of which are more severe than others. Third, the majority (80%) of these EYA care partners reported that they were not the primary care partner and nearly half (48%) stated that others provided more care than they did, indicating that this specific group may not be at the forefront of caregiving. Fourth, most care partners (67%) in this sample stated that they were care partners by choice, which may be associated with a different experience than those for whom care partnering is thrust upon them. Lastly, the majority (65%) of EYA care partners lived on campus, making it less likely that these care partners are present for the daily hassles that often accompany the care partnering experience.</p> <hd id="AN0160719029-31">Limitations</hd> <p>Study limitations include a lack of generalizability beyond a suburban, university setting, a cross‐sectional study design, and a moderate sample size. In addition, this university has a sizable proportion of first‐generation college students for whom interacting with and navigating health systems may be a different, more difficult experience compared to students whose parents attended college in the United States. According to one study examining children of different Mexican‐American generations, first‐generation Mexican‐American children fared substantially worse (i.e., were perceived as having poorer health, had not been to the doctor in the past year, were less likely to have a usual source of care, were less likely to have a specific provider, and were less likely to have seen or talked with a physician in the past year) than second‐ or third‐generation children (Burgos et al., [<reflink idref="bib9" id="ref73">9</reflink>]). Furthermore, given the use of self‐report measures, social desirability may have played a role in the positive nature of the responses; other forms of objective data collection in which social desirability bias is not as prevalent, or incorporating a measure of this construct into the questionnaire battery, may have yielded a very different profile. Additionally, academic data were not verified via educational records; therefore, social desirability could have played a role in students' report of this information. Given that all measures were completed through a link to the questionnaire online, rather than face to face with a study experimenter, we believe the impact of social desirability was minimal, however. Lastly, given that this study was initially designed as a chiefly quantitative comparison of EYA care partners and non‐care partners, rather than a qualitative study, we did not engage in the rigorous analysis plan associated with qualitative data collection (e.g., having a second coder, inter‐rater reliability of themes, etc.). However, we are delighted to have included an open‐ended item for care partners only to begin to shed light on how the care partnering experience may have changed the lives of these EYAs. These considerations notwithstanding, this study represents a glimpse into the unique experience of a relatively unstudied group within the care partner domain.</p> <hd id="AN0160719029-32">CONCLUSIONS</hd> <p>Future research should focus on investigating these same constructs in other groups of EYA care partners, including those for whom care partnering is more of a primary life role (in this sample, only 20% identified themselves as the primary care partner). Particular attention should be given to determining why EYA care partners appear to hold more paid jobs compared to non‐care partners. Studies could utilize a more restrictive definition of "care partner" as a means toward including in the group, for example, those who care for a parent within the house with a chronic or terminal illness. Alternatively, future studies could expand the pool from which the EYA care partner sample is drawn to include those who are not enrolled in college full time or at all, potentially due to their caregiving tasks being more extensive. Most notably, future research should follow EYA care partners over time to determine the long‐term and late effects of caregiving during this fragile developmental stage along the life trajectory.</p> <p>EYA care partners are a relatively unstudied subpopulation of care partners in need of research attention. These findings suggest that there may be subtle differences between the two groups, specifically in the areas of temporal and financial needs, at this early stage. However, in all other domains, many of which are critical for EYAs, the two groups did not differ. Such findings demonstrate that although multifaceted burden has the potential to develop as time passes, those who are able to remain in college while serving as care partners in some capacity are able to maintain a level of functioning comparable to non‐care partners.</p> <hd id="AN0160719029-33">AUTHOR CONTRIBUTIONS</hd> <p>Allison Marziliano led the study design, data collection, data analysis, and study write‐up. Allison Applebaum contributed to the study design and study write‐up, and reviewed drafts of the manuscript. Samantha Siess contributed to the study design and reviewed drafts of the manuscript. Anne Moyer oversaw study design, data collection, data analysis, and study write‐up, as well as reviewed drafts of the manuscript.</p> <hd id="AN0160719029-34">ACKNOWLEDGMENT</hd> <p>This study is supported by start‐up funding to Anne Moyer from Stony Brook University. P30 CA08748, Craig B. Thompson.</p> <hd id="AN0160719029-35">CONFLICT OF INTEREST</hd> <p>The authors declare no conflict of interest.</p> <hd id="AN0160719029-36">DATA AVAILABILITY STATEMENT</hd> <p>The data that support the findings of this study are available from the corresponding author upon reasonable request.</p> <hd id="AN0160719029-37">ETHICS STATEMENT</hd> <p>This study was approved by the Institutional Review Board of a public university in the Northeastern United States. Participants provided consent by continuing past the consent form, which was the first page of the survey.</p> <ref id="AN0160719029-38"> <title> REFERENCES </title> <blist> <bibl id="bib1" idref="ref9" type="bt">1</bibl> <bibtext> AARP. (2020). Staying the course: How dual responsibilities create challenges for student caregivers. 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Items – Name: Title
  Label: Title
  Group: Ti
  Data: A Mixed-Methods Evaluation of the Experience of Emerging Young Adult Care Partners
– Name: Language
  Label: Language
  Group: Lang
  Data: English
– Name: Author
  Label: Authors
  Group: Au
  Data: <searchLink fieldCode="AR" term="%22Marziliano%2C+Allison%22">Marziliano, Allison</searchLink><br /><searchLink fieldCode="AR" term="%22Applebaum%2C+Allison%22">Applebaum, Allison</searchLink><br /><searchLink fieldCode="AR" term="%22Siess%2C+Samantha%22">Siess, Samantha</searchLink><br /><searchLink fieldCode="AR" term="%22Moyer%2C+Anne%22">Moyer, Anne</searchLink>
– Name: TitleSource
  Label: Source
  Group: Src
  Data: <searchLink fieldCode="SO" term="%22Psychology+in+the+Schools%22"><i>Psychology in the Schools</i></searchLink>. Jan 2023 60(1):143-161.
– Name: Avail
  Label: Availability
  Group: Avail
  Data: Wiley. Available from: John Wiley & Sons, Inc. 111 River Street, Hoboken, NJ 07030. Tel: 800-835-6770; e-mail: cs-journals@wiley.com; Web site: https://www.wiley.com/en-us
– Name: PeerReviewed
  Label: Peer Reviewed
  Group: SrcInfo
  Data: Y
– Name: Pages
  Label: Page Count
  Group: Src
  Data: 19
– Name: DatePubCY
  Label: Publication Date
  Group: Date
  Data: 2023
– Name: SourceSuprt
  Label: Sponsoring Agency
  Group: SrcSuprt
  Data: National Institutes of Health (NIH) (DHHS)
– Name: NumberContract
  Label: Contract Number
  Group: NumCntrct
  Data: P30CA08748
– Name: TypeDocument
  Label: Document Type
  Group: TypDoc
  Data: Journal Articles<br />Reports - Research
– Name: Audience
  Label: Education Level
  Group: Audnce
  Data: <searchLink fieldCode="EL" term="%22Higher+Education%22">Higher Education</searchLink><br /><searchLink fieldCode="EL" term="%22Postsecondary+Education%22">Postsecondary Education</searchLink>
– Name: Subject
  Label: Descriptors
  Group: Su
  Data: <searchLink fieldCode="DE" term="%22Undergraduate+Students%22">Undergraduate Students</searchLink><br /><searchLink fieldCode="DE" term="%22Young+Adults%22">Young Adults</searchLink><br /><searchLink fieldCode="DE" term="%22Peer+Relationship%22">Peer Relationship</searchLink><br /><searchLink fieldCode="DE" term="%22Social+Support+Groups%22">Social Support Groups</searchLink><br /><searchLink fieldCode="DE" term="%22Control+Groups%22">Control Groups</searchLink><br /><searchLink fieldCode="DE" term="%22Academic+Achievement%22">Academic Achievement</searchLink><br /><searchLink fieldCode="DE" term="%22Learner+Engagement%22">Learner Engagement</searchLink><br /><searchLink fieldCode="DE" term="%22Employment%22">Employment</searchLink><br /><searchLink fieldCode="DE" term="%22Health+Behavior%22">Health Behavior</searchLink><br /><searchLink fieldCode="DE" term="%22Daily+Living+Skills%22">Daily Living Skills</searchLink><br /><searchLink fieldCode="DE" term="%22Mental+Health%22">Mental Health</searchLink><br /><searchLink fieldCode="DE" term="%22Well+Being%22">Well Being</searchLink><br /><searchLink fieldCode="DE" term="%22Attitudes%22">Attitudes</searchLink><br /><searchLink fieldCode="DE" term="%22Depression+%28Psychology%29%22">Depression (Psychology)</searchLink><br /><searchLink fieldCode="DE" term="%22Anxiety%22">Anxiety</searchLink><br /><searchLink fieldCode="DE" term="%22Student+Experience%22">Student Experience</searchLink>
– Name: DOI
  Label: DOI
  Group: ID
  Data: 10.1002/pits.22781
– Name: ISSN
  Label: ISSN
  Group: ISSN
  Data: 0033-3085<br />1520-6807
– Name: Abstract
  Label: Abstract
  Group: Ab
  Data: There is limited literature on emerging young adult (EYA) care partners, despite a recent rise in interest in this group. The purpose of this study is to compare EYA care partners and their non-care partner peers in the domains of academic achievement and engagement, employment, health-related behaviors and self-care, and mental health and respite, as well as to assess EYA care partners' burden and potential for positive psychosocial sequelae and life changes as a result of their role. Further, within EYA care partners, we examine the relationship between mental health variables and care partner-relevant variables. Two hundred undergraduates (100 care partners and 100 non-care partners) completed measures of academic achievement and engagement (grade point average and credit load), employment (number of paid positions held and number of hours worked per week), health-related behavior/self-care (visits to the dentist, primary care physician, optometrist, diet healthfulness, exercise, cigarette smoking, and drinks per week) and mental health/respite (depression, anxiety, loneliness, drinking, social support, peer pressure, vacation recency, and frequency). Care partners completed measures of spiritual well-being, burden, meaning, and benefit-finding, as well as provided qualitative feedback on how caregiving changed their lives. EYA care partners and non-care partners did not differ on any variables examined except for the number of jobs held, as EYA care partners held more paid jobs than EYA non-care partners. EYA care partners showed moderate burden and high levels of finding meaning/benefit, the latter of which was supported by the themes that emerged from their qualitative data. Within EYA care partners, we found that depression and anxiety (mental health variables) were significantly related to spiritual well-being, burden, benefit finding, and finding meaning through caregiving (care partner-relevant variables). It is encouraging that the care partner and non-care partner groups were similar in domains critical for this age group, such as academic achievement and engagement.
– Name: AbstractInfo
  Label: Abstractor
  Group: Ab
  Data: As Provided
– Name: DateEntry
  Label: Entry Date
  Group: Date
  Data: 2022
– Name: AN
  Label: Accession Number
  Group: ID
  Data: EJ1358116
PLink https://search.ebscohost.com/login.aspx?direct=true&site=eds-live&db=eric&AN=EJ1358116
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  BibEntity:
    Identifiers:
      – Type: doi
        Value: 10.1002/pits.22781
    Languages:
      – Text: English
    PhysicalDescription:
      Pagination:
        PageCount: 19
        StartPage: 143
    Subjects:
      – SubjectFull: Undergraduate Students
        Type: general
      – SubjectFull: Young Adults
        Type: general
      – SubjectFull: Peer Relationship
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      – SubjectFull: Social Support Groups
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      – SubjectFull: Control Groups
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      – SubjectFull: Depression (Psychology)
        Type: general
      – SubjectFull: Anxiety
        Type: general
      – SubjectFull: Student Experience
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      – TitleFull: A Mixed-Methods Evaluation of the Experience of Emerging Young Adult Care Partners
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              Y: 2023
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