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Published Online: 15 October 2014

Differences Between Parents of Young Versus Adult Children Seeking to Participate in Family-to-Family Psychoeducation

Abstract

Objective

Parents of individuals with mental illness often play a central role in initiating and supporting their children’s treatment. This study compared psychological symptoms and experiences of parents of younger versus older consumers. Parents were seeking to participate in a family education program for relatives of individuals with mental illness.

Methods

Domains of caregiving and distress were assessed among parents of youths (N=56), of young adults (N=137), and of adults ≥30 (N=72) who were seeking to participate in the National Alliance on Mental Illness Family-to-Family program.

Results

Parents of youths endorsed greater burden, difficulties, and emotional distress than parents of young adults, who in turn endorsed greater burden, difficulties, and emotional distress than parents of older adults.

Conclusions

Findings suggest that burden, difficulties, and emotional distress among parents seeking participation in this program may be highest when children with mental health concerns are younger and that the burdens recede as children age.
Family involvement has been identified as an important component of the care of individuals with mental illness (1). Parents often serve significant support and advocacy roles in the recovery process. Supporting a child of any age with mental illness is often stressful, incurring both objective and subjective burdens (2,3). Family members of minors may be particularly vulnerable to difficulties related to caregiving and securing appropriate mental health care for their children (4).
The National Alliance on Mental Illness (NAMI), a self-help and advocacy organization established by family members of individuals with mental illness, has attempted to address some aspects of unmet family need through its Family-to-Family (FTF) program, a free 12-session information and support course for family members (5). FTF attendees’ experiences may be quite diverse. Understanding the experiences and emotional well-being of parents with children at different developmental stages may help refine interventions to address their needs, inform effective engagement, and improve services for young people as they transition from pediatric to adult systems of care.
This study compared parents of youths (ages eight to 18), parents of young adults (ages 19 to 29), and parents of adults (ages 30 and older) with mental illness on several measures. Parents were seeking to participate in FTF. Given the additional responsibilities associated with parenting a younger person, we hypothesized that parents of youths would report more objective burden associated with their children’s care, more negative experiences of caregiving, and greater anxiety and depression than parents of older consumers (young adults and adults).

Methods

This study included baseline information for parents who participated in a randomized controlled trial investigating the effectiveness of FTF (6). Data were collected from 2006 to 2009. The study was conducted in five diverse regions of Maryland served by NAMI affiliates: Baltimore metropolitan region (Baltimore City and Baltimore County) and Howard, Montgomery, Frederick, and Prince George’s counties. All parents of consumers are welcome to participate in FTF and do not need release of information or consent from their children. After providing informed consent, participants (N=265) completed baseline assessments via telephone before attending FTF.
Several self-report measures were used (613). Psychological symptoms were measured by the Brief Symptom Inventory. Negative and positive experiences of caregiving were measured by the Experience of Caregiving Inventory, different aspects of coping by the COPE Scale, family functioning by the Family Assessment Device, empowerment by the Family Empowerment Scale, and communication style by the Family Problem-Solving Communication Scale. Knowledge about mental illness was assessed by a knowledge measure. Subjective and objective burden was measured by the Family Experiences Interview Schedule. The methods have been described in detail elsewhere (6). All procedures were approved by the University of Maryland Institutional Review Board.
Data were analyzed across the three parent group: 56 parents of youths, 137 parents of young adults, and 72 parents of adults. Multivariate analyses of variance (ANOVAs) were used to detect omnibus differences on all measured variables. Univariate ANOVAs with Bonferroni adjustments were used for pairwise comparisons between parent subgroups. To control for multiple testing, a false discovery rate adjustment was employed. Effect sizes (η2) were reported for ANOVAs of the dependent measures. Missing data accounted for less than 1% of all data and were deleted pairwise.

Results

Results are presented in Table 1. Compared with parents of both young and older adults, parents of youths reported more problems with managing difficult behaviors, preventing injury to their child and others, and managing attention-seeking behaviors. With respect to their own emotional well-being, parents of youths reported more symptoms of depression than the other two groups.
Table 1 Characteristics of three parent groups seeking to participate in Family-to-Family
VariableRangeParents of youths (N=56)Parents of young adults (N=137)Parents of adults (N=72)χ2apbη2c
N or M% or SDN or M% or SDN or M% or SD
Descriptive information          
 Mother of consumer 4275102755475.01ns 
 Married or living as married 4173997243604.05ns 
 Race          
  White 3766926757794.53ns 
  Black 132336261217
  Other 6119724
 High school diploma 55981369970971.37ns 
 Income >$50,000 45801017450691.90ns 
 “Very involved” with consumer 51911168561851.50ns 
 Age of consumer (M±SD)7–5715.93d2.4823.16d3.0337.97f6.11528.24<.01 
 Age of parent (M±SD)28–7947.84d8.3352.75d5.1764.21f6.55120.59<.01 
 N household residents (M±SD)1–113.96d1.243.29d1.402.22f.7634.09<.01 
Brief Symptom Inventory (T scores) (M±SD)          
 Somatic symptoms38–81g49.958.9750.089.4348.107.981.19ns.01
 Depression38–81g55.25d9.9951.12d9.8350.20f7.375.26.02.04
 Anxiety38–81g55.00d10.8652.81d,e10.0849.81e7.924.54.04.03
 Global severity index33–81g54.63d9.7952.12d,e10.1250.23e6.893.45ns.03
Experience of Caregiving Inventory (M±SD)          
 Negative scale          
  Difficult behavior0–4g2.42d.652.07d.841.93e.855.90.01.04
  Negative symptoms0–4g2.58.742.34.812.26.932.59ns.02
  Stigma0–4g1.58d.881.32d,e.841.21e.723.43ns.03
  Problems with service0–4g2.01.841.86.881.77.891.25ns.01
  Effect on family0–4g2.01d.791.66d.801.49e.826.23.01.05
  Need for backup0–4g2.14.702.23.832.20.76.24ns<.01
  Dependency0–4g2.58d.742.28d.812.05e.697.75<.01.06
  Loss0–4g1.97.761.86.801.86.69.45ns<.01
 Positive scale          
  Positive personal experience0–4h2.30.762.15.672.06.731.73ns.01
  Good aspect of relationship0–4h2.35.662.26.672.15.701.34ns.01
COPE Scale (M±SD)          
 Positive coping4–16h12.043.0711.932.9711.422.86.89ns.01
 Denial4–16h5.181.774.841.554.991.52.92ns.01
 Religious coping4–16h11.355.0512.034.2510.644.692.25ns.02
 Emotional coping4–16h11.883.0812.243.3111.663.34.77ns.01
 Acceptance4–16h12.812.0612.612.4112.312.76.69ns.01
Family Assessment Device (M±SD)          
 General family functioning12–48h24.765.3725.196.0925.996.08.71ns.01
 Family problem solving6–24h12.872.7613.112.8113.372.84.48ns.01
Family Empowerment Scale (M±SD)          
 Within family1–5h3.58d.513.41d,e.633.30e.653.33ns.03
 With service providers1–5h3.79d.523.20d.832.97e.8218.53<.01.12
 Within community1–5h2.48.632.39.762.35.82.50ns<.01
Family Problem-Solving Communication Scale (M±SD)          
 Affirming communication0–15h10.872.9110.732.6911.092.92.38ns<.01
 Incendiary communication0–15g5.953.295.742.975.473.28.36ns<.01
 Total0–3019.965.8719.995.2620.635.76.35ns<.01
Knowledge About Mental Illness Scale (M±SD)0–100h12.34d,e3.4212.39d3.8111.07e3.903.19ns.02
Family Experiences Interview Schedule (M±SD)          
 Subjective burden subscale          
  Worry0–4g2.62.742.65.742.72.77.32ns<.01
  Displeasure1–5g2.87.842.66.852.82.831.63ns.01
 Objective burden composite0–2g1.01d.46.71d.47.38f.3333.14<.01.20
 Daily living assistance0–1g.50d.24.35d.24.19f.1731.12<.01.19
 Supervision scale0–1g.22d.19.13d.16.06f.1216.19<.01.11
  Injury or threat0–1g.17d.25.08d.19.02e.109.85<.01.07
  Attention-seeking behavior0–1g.50d.38.18d.31.10e.2229.71<.01.19
  Night disturbances0–1g.25d.35.18d,e.26.09e.255.76.01.04
  Suicidal ideation or attempts0–1g.11d.21.07d,e.17.02e.075.15.02.04
  Drinking0–1g.09.23.10.22.06.181.08ns.01
  Drugs0–1g.10d,e.26.11d.25.03e.133.41ns.03
  Embarrassing behavior0–1g.31d.34.21d.30.10e.238.33<.01.06
Hospitalized in past 6 monthsYes or no2443564117246.90ns.11i
a
df=2
b
Probability from 3 × 2 chi square or univariate analysis of variance. All p values, except those for the descriptive information, were adjusted for a false discovery rate.
c
Effect size (small, .010; medium, .059; large, .138)
d
,e,f Means that share a superscript did not significantly differ when a Bonferroni correction was used.
g
Range represents range of possible scores. Higher scores indicate worse outcomes (for example, more depression, stigma, or worry).
h
Range represents range of possible scores. Higher scores indicate better outcomes (for example, more effective coping, empowerment, or problem solving).
i
Effect size Cramer’s V (small =.10, medium=.30, large=.50)
Parents of youths reported greater empowerment with service providers compared with the other parent groups. In addition, parents of youths reported significantly more empowerment within their families compared with parents of older adults. No significant group differences were observed in family coping, communication, functioning, subjective burden, and positive caregiving experiences.

Discussion

This study found higher burden in certain areas among parents of ill children compared with parents of young adults, who in turn showed higher burdens in certain areas compared with parents of older adults. Specifically, the higher burdens included some that would be expected given the developmental needs of youths, independent of mental illness (for example, dependency), as well as some that might reflect the nature of emerging mental illness among adolescents (for example, suicidal behavior and threat of injury). Responsibilities, which may entail frequent crisis management, reflect the daily burden and stress encountered by parents of youths with mental illness. The findings also reflect to a lesser degree the burden and stress experienced by parents of young adults with mental illness, compared with parents of older adults.
Several plausible explanations can be offered for the group differences. We did not find significant differences in diagnoses or in the variable used as a proxy for severity of illness (recent hospitalization), suggesting that neither diagnosis nor severity were the primary drivers of our findings. It is likely, however, that younger consumers and their parents may be coping with more recent illness onset and diagnosis than older consumers and their parents. Research on families’ experiences indicates that the period surrounding the diagnosis of a family member’s illness is often characterized by crises, confusion, trauma, anger, and feelings of loss (14). Burdens and distress may arise that are specific to the newness of the mental health concerns. Given these potential burdens, it is not surprising that parents of younger consumers tended to score significantly higher on measures of depression, compared with the other two groups. Anxiety scores were also higher for parents of youths compared with parents of older adults. These findings emphasize the importance of reminding parents of youths that they are not alone and incorporating developmentally informed psychoeducation into mental health services.
Despite this pattern of greater burden and depression among parents of younger consumers, parents of youths reported significantly more feelings of empowerment within the mental health service system compared with parents of adults. This finding may reflect the family-centered approach of many pediatric mental health services. Parents of minors are typically required to consent for treatment and may be more routinely consulted regarding their preferences than parents of consumers who are 18 and older. Because of these responsibilities, parents of younger consumers may feel more confident navigating systems of care and advocating for their child. It is also possible that baseline empowerment is related to help seeking and that more empowerment is required of parents of younger children in order to seek help from FTF. Alternatively, differences in empowerment scores could reflect a lowering of expectations among parents of older consumers, who have been dealing with mental health services longer.
Findings suggest potential areas of emphasis for programs oriented toward caregivers of young consumers. For instance, issues related to objective burden seemed very salient for parents of youths compared with parents in the other two groups. Curriculums that emphasize emotional and instrumental support for parents struggling with threat of injury, attention-seeking and embarrassing behavior, and perhaps suicide might be particularly helpful for parents of youths. This parent subgroup may also benefit from psychoeducation and behavior management training interventions. Elevated depression scores among the parents of youths may be another relevant concern for some parents. Adult-focused referral information for family members experiencing clinically significant depression may be particularly useful. Finally, parents of youths were more likely than parents of adults to have a larger number of household members. Responsiveness to this group’s needs might include having child care or separate youth-friendly activities available during FTF sessions.
In 2008, some NAMI affiliates began to offer a peer-to-peer course designed to meet the needs of families of young consumers. NAMI Basics (www.nami.org/basics) emphasizes issues specific to the challenges faced by families of youths with mental health problems, such as managing difficult behaviors and securing educational services (15). Given the additional stressors reported by parents of youths in our sample, programs such as NAMI Basics may provide benefits that are tailored to the needs of this parent subgroup.

Conclusions

The study documented differences between parents of youths with mental illness and parents of older individuals with mental illness. These differences likely stem from many factors and could inform recommendations for programs such as FTF that serve family members of consumers of various ages.

Acknowledgments and disclosures

This work was supported in part by grant 1R01-MH72667-01A1 from the National Institute of Mental Health; the Maryland Department of Health and Mental Hygiene, Mental Hygiene Administration, through the 1915(c) Home- and Community-Based Waiver Program Management, Workforce Development and Evaluation (OPASS 13-10954G/M00B3400369); Baltimore Mental Health Systems; a Research Seed Funding Initiative grant from the University of Maryland, Baltimore County; the Passano Foundation; and the Johns Hopkins Center for Mental Health in Pediatric Primary Care.
The authors report no competing interests.

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Information & Authors

Information

Published In

Go to Psychiatric Services
Go to Psychiatric Services

Cover: Snowbound, by N. C. Wyeth, 1928. © Copyright 2014 National Museum of American Illustration™, Newport, Rhode Island. Photo courtesy Archives of the American Illustrators Gallery™, New York.

Psychiatric Services
Pages: 247 - 250
PubMed: 24492901

History

Published in print: February 2014
Published online: 15 October 2014

Authors

Affiliations

Jason Schiffman, Ph.D.
Dr. Schiffman and Ms. Kline are with the Department of Psychology, University of Maryland, Baltimore County (e-mail: [email protected]). Dr. Reeves, Dr. Medoff, Dr. Lucksted, and Ms. Fang are with the Department of Psychiatry, University of Maryland School of Medicine, Baltimore. Dr. Jones is with the MANILA Consulting Group, Inc., McLean, Virginia. Dr. Dixon is with the Department of Psychiatry, Columbia University, and with New York State Psychiatric Institute, New York City.
Emily Kline, M.A.
Dr. Schiffman and Ms. Kline are with the Department of Psychology, University of Maryland, Baltimore County (e-mail: [email protected]). Dr. Reeves, Dr. Medoff, Dr. Lucksted, and Ms. Fang are with the Department of Psychiatry, University of Maryland School of Medicine, Baltimore. Dr. Jones is with the MANILA Consulting Group, Inc., McLean, Virginia. Dr. Dixon is with the Department of Psychiatry, Columbia University, and with New York State Psychiatric Institute, New York City.
Gloria Reeves, M.D.
Dr. Schiffman and Ms. Kline are with the Department of Psychology, University of Maryland, Baltimore County (e-mail: [email protected]). Dr. Reeves, Dr. Medoff, Dr. Lucksted, and Ms. Fang are with the Department of Psychiatry, University of Maryland School of Medicine, Baltimore. Dr. Jones is with the MANILA Consulting Group, Inc., McLean, Virginia. Dr. Dixon is with the Department of Psychiatry, Columbia University, and with New York State Psychiatric Institute, New York City.
Amanda Jones, Ph.D.
Dr. Schiffman and Ms. Kline are with the Department of Psychology, University of Maryland, Baltimore County (e-mail: [email protected]). Dr. Reeves, Dr. Medoff, Dr. Lucksted, and Ms. Fang are with the Department of Psychiatry, University of Maryland School of Medicine, Baltimore. Dr. Jones is with the MANILA Consulting Group, Inc., McLean, Virginia. Dr. Dixon is with the Department of Psychiatry, Columbia University, and with New York State Psychiatric Institute, New York City.
Deborah Medoff, Ph.D.
Dr. Schiffman and Ms. Kline are with the Department of Psychology, University of Maryland, Baltimore County (e-mail: [email protected]). Dr. Reeves, Dr. Medoff, Dr. Lucksted, and Ms. Fang are with the Department of Psychiatry, University of Maryland School of Medicine, Baltimore. Dr. Jones is with the MANILA Consulting Group, Inc., McLean, Virginia. Dr. Dixon is with the Department of Psychiatry, Columbia University, and with New York State Psychiatric Institute, New York City.
Alicia Lucksted, Ph.D.
Dr. Schiffman and Ms. Kline are with the Department of Psychology, University of Maryland, Baltimore County (e-mail: [email protected]). Dr. Reeves, Dr. Medoff, Dr. Lucksted, and Ms. Fang are with the Department of Psychiatry, University of Maryland School of Medicine, Baltimore. Dr. Jones is with the MANILA Consulting Group, Inc., McLean, Virginia. Dr. Dixon is with the Department of Psychiatry, Columbia University, and with New York State Psychiatric Institute, New York City.
Li Juan Fang, M.S.
Dr. Schiffman and Ms. Kline are with the Department of Psychology, University of Maryland, Baltimore County (e-mail: [email protected]). Dr. Reeves, Dr. Medoff, Dr. Lucksted, and Ms. Fang are with the Department of Psychiatry, University of Maryland School of Medicine, Baltimore. Dr. Jones is with the MANILA Consulting Group, Inc., McLean, Virginia. Dr. Dixon is with the Department of Psychiatry, Columbia University, and with New York State Psychiatric Institute, New York City.
Lisa B. Dixon, M.D., M.P.H.
Dr. Schiffman and Ms. Kline are with the Department of Psychology, University of Maryland, Baltimore County (e-mail: [email protected]). Dr. Reeves, Dr. Medoff, Dr. Lucksted, and Ms. Fang are with the Department of Psychiatry, University of Maryland School of Medicine, Baltimore. Dr. Jones is with the MANILA Consulting Group, Inc., McLean, Virginia. Dr. Dixon is with the Department of Psychiatry, Columbia University, and with New York State Psychiatric Institute, New York City.

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