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Service Needs of MaleCaretakers of HIV-Infected andAffected ChildrenDavid L. Strug PhD a & Carolyn K. Burr EdD, RN ba Wurzweiler School of Social Work , YeshivaUniversity , 2495 Amsterdam Avenue, New York, NY,10033, USAb National Pediatric and Family HIV Resource Center,Francois-Xavier Bagnoud Center , University ofMedicine and Dentistry of New Jersey , 30 BergenStreet, ADMC#4, Newark, NJ, 07103, USAPublished online: 08 Oct 2008.
To cite this article: David L. Strug PhD & Carolyn K. Burr EdD, RN (2004) ServiceNeeds of Male Caretakers of HIV-Infected and Affected Children, Social Work in HealthCare, 38:2, 73-92, DOI: 10.1300/J010v38n02_04
To link to this article: http://dx.doi.org/10.1300/J010v38n02_04
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Service Needs of Male Caretakersof HIV-Infected and Affected Children:
Policy and Practice Implications
David L. Strug, PhDCarolyn K. Burr, EdD, RN
ABSTRACT. The number of male caretakers (biological fathers andother men) of HIV-infected and affected children is substantial and mayincrease in the US and elsewhere as more women become infected. Littleinformation exists about the needs these men have for support services tohelp them better perform their parenting roles as male caretakers (MCs).This paper discusses the service needs of MCs at Ryan White CARE ActTitle IV programs, the challenges providers at these programs face inserving MCs, and the strategies they have found effective in working
David L. Strug is Associate Professor, Wurzweiler School of Social Work, YeshivaUniversity, 2495 Amsterdam Avenue, New York, NY 10033 (E-mail: [email protected]). Carolyn K. Burr is Associate Director, National Pediatric and Family HIV Re-source Center, Francois-Xavier Bagnoud Center, University of Medicine and Dentistryof New Jersey, 30 Bergen Street, ADMC#4, Newark, NJ 07103 (E-mail: [email protected]).
Address correspondence to: David L. Strug, PhD at the above address.The authors thank Estella Ortega and Maggie Garcia at the National Pediatric and
Family HIV Resource Center for their assistance. The authors also thank JeffreyBeedle of Philliber Research Associates, Jose Morales and Brian Feit of the U.S. De-partment of Health and Human Services Administration, and Ruth Ottman of the G. H.Sergievsky Center and Mailman School of Public Health (Epidemiology Division),Columbia University.
This publication was supported in part by grant number 5U69HA00038-03 from theHealth Resources and Services Administration (HRSA). The publication’s contentsare solely the responsibility of the authors and do not necessarily represent the officialview of HRSA or the HIV/AIDS Bureau of HRSA.
Social Work in Health Care, Vol. 38(2) 2003http://www.haworthpress.com/store/product.asp?sku=J010
2003 by The Haworth Press, Inc. All rights reserved.Digital Object Identifier: 10.1300J010v38n02_04 73
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with MCs. Providers report that MCs have specific service needs includ-ing the need for emotional support. Title IV programs meet these needsin a limited way because they are organized primarily around the needsof female rather than male caretakers. We discuss how Title IV programscan tailor existing service delivery and implement organizational changeto facilitate MCs’ service access and utilization. Further research di-rectly with MCs is necessary to learn more about their service needs andthe barriers MCs face in accessing services. [Article copies available for afee from The Haworth Document Delivery Service: 1-800-HAWORTH. E-mailaddress: <[email protected]> Website: <http://www.HaworthPress.com>© 2003 by The Haworth Press, Inc. All rights reserved.]
KEYWORDS. Fathers, AIDS, Title IV, policy and planning, service de-livery, pediatrics, caretakers
INTRODUCTION
The number of male caretakers (biological fathers and other men)of HIV-infected and -affected children is substantial. Their numbercan be expected to increase in the US and throughout the world asmore women become infected with HIV/AIDS, and as more males as-sume parenting responsibilities (Strug, Rabb, & Nanton, 2002; USAID,UNICEF, & UNAIDS, 2002). Little information exists about the needsthese men have for support services to help them better perform theirparenting roles as male caretakers (MCs).
This paper describes provider views of MCs’ support service needsat 25 Ryan White CARE Act Title IV programs and was designed tolearn more about the service needs of this population. It addresses thefollowing questions: (1) What do providers perceive to be the serviceneeds of MCs? (2) What challenges do providers face in serving MCs?(3) What strategies have providers found to be effective in working withMCs?, and (4) What changes in Title IV programs might facilitate MCs’service access and utilization?
A male caretaker in this study is a man who has either primary orshared responsibility for the care and well being of one or more infectedchildren, regardless of that caretaker’s relationship to the child(e.g., biological fathers, uncles, grandfathers, family friends). Thenumber of HIV-infected and affected children with MCs, while un-known, is probably substantial despite the fact that the majority of
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these children are still being raised by their biological mothers and byother female caretakers, especially grandmothers (Calandro Hughes,1998; Poindexter & Linsk, 2000).
This study is relevant to policy makers and program providers atHIV/AIDS programs and at other health care and social service settingsthat work with HIV-infected children and affected family members. In-formation about MCs’ service needs and about barriers MCs may facein accessing services can help program planners, policy makers andpractitioners to help MCs to obtain the services they need. More MCsmay successfully care for their HIV-infected and affected children ifprograms geared their services to the specific challenges these menface.
We previously carried out an exploratory needs assessment of thesupport service needs of male primary caretakers (Strug, Rabb, &Nanton, 2002). In this study, we examined provider views of all MCs,regardless of whether they have primary or shared care-taking responsi-bilities. The goals of this current investigation were to estimate more ac-curately the numbers and types of MCs and to explore topics notinvestigated previously, including providers’ perceived effectivenessof services for MCs.
We surveyed providers from Ryan White CARE Act Title IVprograms because these programs serve almost half of all knownperinatally acquired pediatric HIV/AIDS cases in the US (Centers forDisease Control and Prevention, 2002b, 2002c). Service providers inthis study refer to caseworkers and social workers at Title IV programsthat assist MCs and their families with support service needs.
The majority of Title IV programs are located in health care insti-tutions (42%) and community social service agencies (43%) [U.S.Department of Health and Human Services Administration, 2000].They are intended to reach children, adolescents, women and fami-lies who are most at risk for HIV infection and most affected byHIV/AIDS. Title IV program services include primary and specialtymedical care, psychosocial services, and logistical support as well asoutreach and prevention to provide a continuum of care for under-served, at-risk, and mostly Black and Hispanic populations (U.S. De-partment of Health and Human Services Administration, 1998).
Adult men age 24 and older comprise 8% (N = 4,068) of the clientsattending Title IV programs in 2000 according to the most recent avail-able published statistics (U.S. Department of Health and Human Ser-vices Administration, 2000). Seventy percent (N = 2,847) of these menwere HIV-infected and 84% percent were Black and Hispanic. The
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number of adult males served by Title IV programs has increasedsteadily, growing by 45% from 1999-2000, the largest increase of anyclient group.
HIV infection among U.S. women has increased significantly overthe last decade, especially in communities of color in the US, sub-Sa-haran Africa, in the Caribbean, and Asia (Centers for Disease Controland Prevention, 2002a). The proportion of all AIDS cases reportedamong adult and adolescent women in the US more than tripled from1985-1999. Most (78%) of these women are Black and Hispanic fe-males of childbearing age. AIDS was the third leading cause of death ofAfrican American women aged 25-44 in 1999 (Centers For DiseaseControl and Prevention, 2002a). Many HIV-infected women lack the fi-nancial resources to care for their children or are unable to do so becauseof their HIV/AIDS-related illness (Pequenat & Szapocnnik, 2000; Tay-lor-Brown, Teeter, Blackburn, Oinen, & Wedderburn, 1998). However,many women continue to have children after being diagnosed with HIVinfection (Schuster et al., 2000). Many of these women become lessable to care for their children as their HIV/AIDS-related illness pro-gresses.
New family configurations have arisen to care for HIV-infected andaffected children (Krener, 1992; Joslin, 2002). Many males have as-sumed or will assume a parental role to provide some kind of guardian-ship of these children (Wiener, Vazquez, & Battles, 2001). These malecaretakers may be biological fathers or have another relationship tothese children (Paige & Johnson, 1997; Reisinger, 1999). However,men have been largely invisible in their role as caretakers. Their needsas parents and caretakers have been virtually ignored by policy makers,programs, and the professional literature as noted before.
In our earlier study, a total of 262 male primary caretakers (MPCs)attended 34 Title IV programs (Strug, Rabb, Nanton, 2002). Most ofthese MPCs were uninfected biological fathers. Few had other HIV-in-fected children, and about a third were reported to live alone with the in-fected child. About half had other HIV-affected children in the home.Approximately one-half were reported to have the support of a femalecaretaker. However, the results of the prior survey were somewhat diffi-cult to interpret because we asked programs to report on the proportionof MPCs with various characteristics rather than on the MPCs individu-ally. We did not ask about the number of HIV-infected children withmale caretakers.
Rough estimates of the proportion of HIV-infected children beingcared for by MCs can be obtained from other sources. As noted above,
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adult men represented 8% of all Ryan White CARE Act Title IV en-rolled clients receiving services in 2000 (U.S. Department of Healthand Human Services Administration, 2000). Thirty percent of thesemen are HIV-affected. Some of them are likely to be MCs. A NewYork State Department of Health unpublished report (Pediatric/Ado-lescent/Family Comprehensive Center, 1998) indicated that in 1993males comprised 14% of 986 caretakers of HIV-infected children whowere clients of the state’s Pediatric/Family Comprehensive Center. Ap-proximately 11% (N = 66) of HIV-infected and affected children at aBrooklyn-based Title IV program and its affiliates were reported to beliving alone with their biological fathers (Philliber Research Associates,2002). About two-thirds of these children had deceased mothers. MCsfrom families with mostly HIV-affected, but also some infected children,have consistently comprised 10-20% of all families coming to The Fam-ily Center, an organization in New York City that assists with custodyplanning for families with a terminally ill parent (typically a HIV-in-fected mother) (B. Draimin, personal communication, April 3, 2000).
HIV-infected children often suffer from significant developmental,medical and psychosocial problems that challenge the child rearingskills of the men who raise them (Anderson, 1998; Strug, Nanton, &Rabb, 2002). HIV-affected children also experience a variety of signifi-cant psychosocial problems as a result of growing up in a householdwhere at least one family member has HIV/AIDS (Geballe, Gruendel,Andiman, 1995). Male primary caretakers have a great need for supportservices to cope with these psychosocial challenges as stated above, al-though we know little about those needs or about the barriers MCs facein accessing services. Ninety-seven percent (N = 31) of MCs reported aneed for gender-specific support groups, assistance with discipline, dis-ease management and planning for the future in a study carried out atthe Pediatric Branch of the U.S. National Cancer Institute (Wiener,Vasquez, & Battles, 2001).
Our previous survey (Strug, Rabb, Nanton, 2001) reported that TitleIV providers indicate they offer male primary caretakers many of theservices these men say they need and ask for. However, a smaller per-centage of men versus women utilize health care and social services atTitle IV programs (U.S. Department of Health and Human Services Ad-ministration, 2000). A smaller percentage of adult male versus femaleclients used primary medical care (30% of males versus 51% of fe-males) and mental health services (9% of males versus 19% of females)at Title IV programs in 2000. Adult men were least likely to be assigneda case manager out of all service population groups enrolled at Title IV
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programs in 2000. Adult men also represented the smallest percentage(9%) of any target population (excluding pregnant women) that partici-pated in Title IV-sponsored group encounters (counseling, education,recreation and community meetings) in 2000.
METHODS
Data for this study come from responses to a questionnaire sent toproject directors at 65 Ryan White Title IV grantees by fax in Septem-ber 2001 from the National Pediatric and Family HIV Resource Center(NPHRC) at the University of Medicine and Dentistry of New Jersey.We asked that Title IV program directors gather information directlyfrom caseworkers and social workers in their programs because we be-lieved that these providers would have the most knowledge about MCson their caseloads. A cover letter accompanying the survey requestedthat each site in Title IV programs with multiple care sites complete thesurvey. Informed consent was obtained from program directors. Pro-viders reported their names, titles, mailing address, phone, fax, ande-mail addresses. A reminder fax with another copy of the letter andsurvey was sent to projects that did not initially return the survey. Fol-low up telephone calls were made to projects that did not respond to thesecond fax.
The survey instrument was designed to gather basic informationfrom providers on the support service needs of MCs attending RyanWhite Title IV CARE Act programs around the country. An introduc-tory section of the questionnaire contained a definition of the MC with“primary responsibility” as the one person who makes most decisionsabout the child(ren)’s medical care and daily activities, such as those re-lated to recreational or school activities, outings with the family, etc. AnMC with “shared responsibility” was defined as having more or lessequal responsibility with someone else for making decisions about thechild(ren)’s medical care and daily activities.
Part I of the questionnaire asked providers, (1) the number of HIV-in-fected children age 18 and younger their agencies serve, (2) the numberof children with MCs, (3) the number of MCs their agency serves, (4) thenumber of MCs in each category of relationship with their HIV-infectedchildren (e.g., biological, adoptive, foster fathers), (5) the number ofMCs who have primary or shared responsibility, (6) the number whohave the support of a female caretaker, (7) the number who live alonewith the HIV-infected child, (8) the number who have the support
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of other individuals, (9) the number who have other HIV-infected chil-dren, (10) the number who have HIV-affected children, (11) the numberof MCs who are diagnosed with HIV/AIDS, (12) the types of servicesoffered to MCs taken from a list of 29 different services, and (13) theservice delivery strategies providers view as effective in working withMCs taken from a list of 17 delivery strategies. Providers were asked torate the effectiveness of these 17 on a scale from 1-ineffective to 5-veryeffective. The survey also asked if programs had any MCs as paid staffor consultants at their agency.
The five open-ended questions in Part II asked providers about:(1) strategies providers developed for working with MCs, (2) the ser-vices MCs most typically request, (3) challenges providers face in serv-ing MCs, (4) what programs need to know about MCs’ lives to meettheir service needs, and (5) MCs’ unmet health care and social serviceneeds. Responses to open-ended questions were read and sorted intodiscrete categories (e.g., reported service needs were organized intocategories such as housing, education, and substance abuse treat-ment). Responses to closed and open-ended questions were enteredinto a Statistical Package for the Social Sciences file for purposes ofanalysis (SPSS for Windows, Release 8.0.0).
RESULTS
We received a total of 31 completed surveys from 43% (28/65) of theTitle IV programs sent the survey. Responses were received from pro-grams from all regions of the country, with the greatest number from thenortheast U.S. One multi-site program completed the survey with com-bined responses from six local sites. Two multi-site projects submittedindividual surveys from two and three affiliated sites respectively.
Number of Male Caretakers
Six programs reported that they are serving no children less than 18years of age and were eliminated from the analysis. The remaining 25programs served between two and 520 children less than age 18 (Table1A). The total number of children 18 years of age or under served bythese 25 programs was 2,564. Overall, 24% of children in all programswere reported to have MCs. This percentage varied from 0-68% in dif-ferent programs with an average of 31% within programs. The totalnumber of MCs served by the programs was 524 (average per program,21; range, 0-127).
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Seventeen of the 25 programs reported the relationship of MCs totheir children (N = 426 MCs) (Table 1B). Many programs noted they donot routinely collect these types of data and could not report them.Sixty-nine percent of the MCs were reported to be biological fathers(N = 293), 14% (N = 61) adoptive fathers, 7% (N = 29) kinship foster fa-thers, 4% (N = 18) non-kinship foster fathers, and 6% (25) to have someother type of relationship to the HIV-infected child. Programs indicatedthat 136 MCs (28%) in 19 programs were diagnosed with HIV/AIDS(Table 2).
Parenting Responsibilities and Social Support of MCs
The number of programs that reported on various characteristics ofparenting responsibilities and social support varied considerably (Table 2).In the 18 programs reporting on primary versus shared care-taking re-
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TABLE 1. Characteristics of Children with HIV Infection and Their Caretakers
A. Children with HIV Infection and Their Male Caretakers in 25 Programs
Total Mean (SE) Range
Children with HIV Infection Served by Programs 2564 102.6 (24.7) 2-520
Children with Male Caretakers* 628 26.2 (6.3) 0-133
Male Caretakers Served by Programs 524 21.0 (5.7) 0-127
Percent of Children with Male Caretakers* 24.4 31.2 (4.2) 0-68.2
*Data were missing for one program
B. Relationship of Male Caretakers to Children with HIV Infection in 17 Reporting Programs
Percent of MaleCaretakers With Each
Relationship Within Programs
Relationship to Child Total No (%) Mean (SE) Range
Biological Father 293 (68.7) 75.3 (5.6) 17-100
Adoptive Father 61 (14.3) 13.0 (4.9) 0-83
Kinship Foster Father 29 (6.8) 5.7 (2.4) 0-40
Non-Kinship Foster Father 18 (4.2) 2.6 (1.7) 0-28
Other 25 (5.9) 3.5 (1.2) 0-17
Total 426 (100.0)
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sponsibilities of MCs, 18% (N = 82) had primary responsibility. Twelvepercent (N = 45) of MCs at 12 reporting programs were living alonewith the infected child, 73% (N = 321) at 16 programs were reported tohave the support of a female caregiver, and 32% (N = 130) at 11 pro-grams were reported to have the support of another individual. Six per-cent of MCs (N = 21) at nine programs were reported to have otherchildren with HIV-infection in the home, and 57% (N = 202) at 13 pro-grams were reported to have other affected children in the home.
MCs’ Service Needs
Twenty programs reported on the services MCs requested most of-ten. In response to the open-ended question “What services do the MCsin your agency most typically request?” providers said that MCs typi-cally ask for little support, but that they are able to open up emotionallywhen providers approach them in a sympathetic manner. Providers alsostated in response to this open-ended question that they offer MCs thesame services they offer to female caretakers. More programs reportedMCs’ request for entitlement services (9 programs) than for any otherkind of service, e.g., financial assistance, transportation and housing).MCs’ requests for emotional support (8 programs), parenting educa-tion (6 programs), medical services (5 programs), HIV/AIDS educa-tion (4 programs), respite care (2 programs), and substance abusetreatment (1 program) followed entitlement services.
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TABLE 2. Parenting Responsibilities and Social Support of Male Caretakers
Parenting or Social SupportCharacteristic
No. ProgramsReporting onCharacteristic
Total No.Male
CaretakersNo. (%) withCharacteristic
Percent of MaleCaretakers With
Characteristic WithinPrograms
Mean (SE) Range
Primary Responsibility 18 452 82 (18.1) 18.6 (4.5) 0-63
Lives Alone with Infected Child 12 392 45 (11.5) 14.2 (3.9) 0-50
Support of a Female Caretaker 16 439 321 (73.1) 75.0 (6.8) 13-100
Has Support of AnotherIndividual
11 408 130 (31.9) 26.9 (10.9) 0-100
Other Children with HIVin Home
9 364 21 (5.8) 4.5 (1.0) 0-8
Other Affected Childrenin Home
13 356 202 (56.7) 59.5 (6.5) 13-100
Male Caretaker Diagnosedwith HIV/AIDS
19 482 136 (28.2) 42.9 (8.6) 0-100
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For each of 29 services, Figure 1 shows the percent of programs thatreported they offer specific services to MCs. Not all programs offeredall 29 services. No program reported it offered any of the 29 servicesto MCs only. The following services were reported to be provided di-rectly by 70% or more of programs: access to clinical trials (85%), as-sistance with medication adherence (81%), family support (81%),outreach/prevention education (80%), HIV- counseling and testing(77%), out-patient HIV specialty care (76%), TB screening (76%),laboratory and diagnostic testing (71%), and nutrition counseling(71%). Only 45% of programs (9) directly offered MCs outpatientmental health services and 43% of programs (9) offered parentingskills training.
Fifty percent or more of programs that provided information abouta particular service offered the following services to MCs by referral:in-patient substance abuse (82%), hospice care (77%), home care(75%), outpatient substance abuse treatment (72%), in-patient mentalhealth (68%), housing assistance (67%), legal services (67%), familyreunification (64%), other specialty care services (58%), respite care(55%), faith/spirituality support (52%), and outpatient mental health(50%). Twenty percent of programs (5) did not offer legal, peer supportor respite services to MCs, either directly or by referral.
Nineteen programs reported on the unmet health care and social ser-vice needs of male caretakers. More programs (63%) indicated MCs’need for mental health counseling than for any other service need, fol-lowed by access to medical services (42%) (Table 3). In response to theopen-ended question “What do you believe are MCs’ unmet health careor social service needs?” providers reported it is frequently difficult toget MCs appropriate medical services for themselves because manyMCs lack access to third party reimbursement.
Programs rated the effectiveness of 17 types of services for MCs on ascale from 1-ineffective, to 5-very effective. The overall mean for allservices was 3.99. The five services reported to be the most effectivewere the following: working with the whole family (4.6), case manage-ment (4.5), continuous access to providers (4.37), co-location of clini-cal and support services (that is, services for both children and otherfamily members in the same physical location) (4.1), and child care(3.9). The five services reported to be the least effective were the fol-lowing: support groups for male caretakers (2.7), community outreach(3.1), peers providing support and education (3.3), life skills training(3.5), and community advocacy network (3.5).
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Challenges Providers Face in Serving MCs
Twenty-three programs responded to the open-ended question “Whatchallenges or particular concerns does your program face in servingMCs?” A number of programs reported MCs’ work schedule was a ma-jor challenge because it interfered with their ability to come to clinicduring regular daytime clinic hours. Other challenges were programs’lack of male-oriented services and their inability to provide medicalcare to some MCs because these men do not qualify on the basis of theirnon-HIV/AIDS status.
Providers also reported that MCs tend to be less expressive abouttheir need for emotional support than are female caretakers. They stated
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Impatient Substance Abuse Treatment
1009080706050403020100
Percent of Programs that Offer Service
Hospice CareLegal Services
Outpatient Substance AbuseHomecare
Inpatient Mental Health ServicesRespite Care
Family ReunificationHousing Assistance
Faith/Spirituality Support ServicesOther Specialty Care/Services
ChildcarePermanency Planning
Parenting Skills EducationOutpatient Mental Health Services
Peer Support Services/GroupsInpatient HIV Specialty Care
Case ManagementPrimary Care
Nutrition EducationLaboratory/Diagnostic Tests
TB ScreeningOutpatient HIV Speciality Care
HIV CounselingOutreach/Prevention Education
Family Support ServicesAdherence/Medication Management
Access to Clinical Trials
Oral Health/Dental Services
FIGURE 1. Percent of Programs that Offered Specific Services Directly toMCs.
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that it is difficult to emotionally engage MCs. They reported that TitleIV programs have been organized to serve women, are staffed mostlyby women, and are sensitive to the issues that female caretakers face,but not necessarily to those of MCs. Providers indicated that femalecaretakers often do not tell MCs about those clinic services that areavailable to MCs, which is another obstacle to serving the needs ofMCs.
Providers were asked the open-ended question, “What does youragency most need to know about the lives of MCs to best meet their spe-cial needs?” They responded that it is challenging to plan services forMCs without information about the barriers MCs face in accessing ser-vices, including how much MCs know about Title IV programs. Pro-viders do not know what MCs’ female partners tell them, if anything,about the services that Title IV programs offer. Providers note that MCsdo not always report their true financial and employment status, whichmakes it difficult for providers to arrange for support services for MCs.Providers’ lack of detailed information about MCs’ need for emotionaland for social support makes it difficult to arrange for needed mentalhealth and social support services for MCs.
Effective Strategies for Male Caretakers
Providers described two major strategies that they utilized for meet-ing MCs’ service needs. One group of strategies involves specific ac-tivities directed toward MCs. Some programs assigned male social
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TABLE 3. Male Caretakers’ Unmet Health and Support Service Needs
Needs (N = 19) No. of Programs Percent
Mental Health Counseling 12 63
Medical Services Access 8 42
Health Care Education 6 32
Respite 3 16
Child Care 2 11
Financial Support 2 11
Outreach 2 11
Substance Abuse Treatment 2 11
Dental Care 1 5
Housing 1 5
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workers, nurse practitioners, or physicians to work with MCs. Someprograms targeted outreach to affected men in their community. Oneprogram described a monthly ongoing support group for MCs. An-other conducted a needs assessment of MCs that identified helpful ap-proaches for working with this population. This program is seekingadditional funding to implement these strategies. Three of 25 pro-grams reported they had MCs as staff or paid consultants.
The second strategy reported by programs adapts ongoing servicesto families in an effort to make them welcoming to men. These includea family-centered approach to care and case management includingco-location of services, childcare for HIV-infected and -affected chil-dren during clinic visits, outreach to adult HIV medical providers andAIDS services, the creation of male caregiver networks, on-going sup-port groups and parenting education programs.
Programs reported only limited success thus far in implementingthese strategies for MCs. Several tried to start a male support group withlittle success. Other programs tried a variety of strategies: working withmale consultants, placing males on their advisory board, and holding aretreat for MCs, but reported none of these efforts succeeded.
DISCUSSION
A quarter of all HIV-infected children at the Title IV programs sur-veyed have MCs. Most of the MCs were uninfected biological fathers.Comparatively few had other HIV-infected children or lived alone withthe HIV-infected child. Programs indicated that most MCs had sharedcare taking responsibility and the support of a female caretaker.
Providers reported that these programs serve the majority of theseMCs and that they offer a large number of support services that areavailable to both male and female caretakers either directly or by refer-ral. However, none of the 25 programs in this survey reported that theycurrently offer services that are specifically tailored to meet the particu-lar needs of MCs of HIV-infected and affected children. Providersnoted that Title IV programs have been organized to address the issuesfemale caretakers have and not those of MCs.
Title IV programs in this survey appear to meet MCs’ service needsin a limited way. For example, more programs listed MCs’ need formental health counseling than for any other unmet health care or socialservice need and a large number of programs report that MCs requestemotional support and parenting skills training. Yet fewer than half the
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programs surveyed report that they offer either of these services directlyto MCs.
Many MCs (12%) live alone with their HIV-infected children eventhough the majority does not. Many (18%) have primary responsibilityfor both HIV-infected- and -affected children. Single fathers in the USin general find it difficult to balance work and child rearing, establish asocial life, and navigate the legal system (Greif, 1992). It may be espe-cially difficult for MCs like those discussed here, some of whom arethemselves diagnosed with HIV/AIDS, to cope with the simultaneousdemands of work, childrearing and social life. However, 20% of theprograms surveyed do not offer MCs legal, peer support or respite ser-vices that are needed to help MCs cope. Adult men at Title IV programsutilize primary medical and HIV specialty care services much morethan psychosocial support services such as mental health or familyplanning (U.S. Department of Health and Human Services Administra-tion, 2000).
Program limitations, combined with the reported lack of basic infor-mation about the lives of MCs, traditional organization of services tomeet the needs of female caretakers, infrequent request of services byMCs, and their difficulty accepting assistance when it is offered tothem, represent major barriers to MC service access and utilization atTitle IV programs.
The results of this investigation confirm those from our earlier sur-vey of the provider views of male primary caretakers (Strug, Rabb, &Nanton, 2002). That study reported that male primary caretakers havespecific support service needs that are either not being met by existingprograms or are limited in availability such as for networking, child careand parenting skills training. The present investigation indicates thatMCs with shared care taking responsibilities may have support serviceneeds similar to those of male primary caretakers. This investigationalso suggests that many MCs’ have unmet needs for mental healthcounseling, access to medical care and health care education. Providersconsider, as effective ways to assist MCs, working with the whole fam-ily, case management, continuous access to providers, and co-locatedclinical and support services.
The percentage of programs in this study that indicated MCs requestemotional support is almost identical to that reported in our earlier sur-vey (40% versus 39%). This suggests that caring for HIV-infected and-affected children with only limited emotional support, and with inade-quate support services may be a major challenge for MCs whether theyhave shared or have primary care taking responsibilities (Strug, Rabb,
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Nanton, 2002). We believe this to be true, although we did not examinethe support service needs of MCs with shared responsibility separatelyfrom those of MCs with primary responsibility, because most MCs(81%) were reported to have shared responsibility.
MCs often experience anxiety, depression and grief whether theylive alone or have shared responsibility for one or more infected- and af-fected children (Pivnick & Vargas, 2000; Wiener, Vasquez, & Battles,2001). The emotional stress associated with care taking of HIV-in-fected and affected children may be reflected by the use of Title IVmental health services by 19% of all adult female clients at Title IVprograms in 2000, the last year for which this type of data was avail-able (U.S. Department of Health and Human Services Administration,HIV/AIDS Bureau, 2000). Only nine percent of all adult male clients atTitle IV programs were reported to have used these same services asnoted before, suggesting that men may underutilize mental health, aswell as other types of services, at Title IV programs.
The fact that MCs in this study reportedly request financial assis-tance, housing and transportation as well as mental health counselingand medical assistance for themselves and their children suggests thatthese men are exposed to multiple stressors. Offering MCs intensivecase management to directly address these problems may be one helpfulapproach in this regard. Holding support groups for MCs may also beuseful because this setting would allow MCs to talk with one about theadded challenges they face as caretakers of HIV-infected and -affectedchildren in need of financial support, housing, and other services. Asupport group might also be a place where MCs could share ideas abouthow best to get these service needs met. However, support groups forMCs are not common at Title IV programs (Strug, Rabb, & Nanton,2002) and respondents in this current study rated supportive groups forMCs as low on the list of effective service delivery strategies they use.Why this is the case needs further exploration. Other innovative ap-proaches to support may be needed to adequately respond to MCs’ sup-port needs.
Facilitating MCs’ Service Access and Utilizationat Title IV Programs
Existing services may have to be tailored to better fit the specificneeds of MCs, some of whom are themselves HIV-infected and are cop-ing with their own illness in addition to that of their child as noted be-fore. While the topics covered in parenting classes for MCs may be
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similar to those for female caretakers, it may be necessary to utilize spe-cial approaches in parenting classes for MCs in order to help them learnto share feelings, manage money, care for a medically fragile child andother affected children in the home, communicate with children aboutimportant topics such as sexuality, and advocate for their custodialrights. Many MCs have reported such parenting roles to be especiallychallenging to enact because they lacked appropriate adult male rolemodels when they were growing up (Strug, 2002; Strug, Rabb, &Nanton, 2002).
No individual Title IV program has the resources to offer male care-takers all the services they need. But Title IV programs can integrate thedelivery of services they offer with other programs these MCs may at-tend. Providers can reach out to affiliated programs in their network tohelp MCs obtain needed services. Title IV programs may need to findspecific ways to sensitize their staff to the fact that the continuum ofcare they provide must explicitly include MCs along with HIV-infectedwomen, infants, children, youth, and families.
It might be helpful for Title IV program staff to examine the currentway in which services are delivered and organized in order to assesswhether characteristics of the current service delivery system affect ac-cess and utilization by MCs. Providers indicated that some MCs do notuse program services because they work during regular clinic hours.Programs may need to adjust their schedules to include evening orweekend hours in an effort to make it possible for MCs who are workingor have other responsibilities during regular program hours to attend.Title IV programs may consider restructuring some services in order tomaximize the opportunity the staff has to work with the whole familyincluding MCs. The existence of co-located services and continuous ac-cess to professional providers at Title IV programs may facilitate MCs’service access and utilization. A number of providers indicated thatthese particular program characteristics are effective in delivering ser-vices to MCs at their Title IV programs.
Having male staff members who are dedicated to working with MCsmay make it easier for MCs to talk with staff about complex parentingissues such as how to speak with female children about sex. Hiring MCsto help identify other MCs, to assist in the collection of informationabout MCs’ service needs, and to help run peer support groups may im-prove MC service access and utilization. This may assist MCs to feelmore welcome at Title IV programs and facilitate their expression oftheir needs and preoccupations. The use of the MC as a designated
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worker was reported to be a successful intervention at a Title IV pro-gram in Miami (May & Nanton, 2002).
Title IV programs need to systematically collect more informationabout male caretakers directly from MCs, in order to better identifythose who attend their programs, to assess MCs’ needs, and to plan forservices for this population. One way to collect this information wouldbe to hold focus groups with both MCs and service providers. Focusgroups with MCs can provide staff with information about their per-sonal lives, their support service needs, perceived barriers to service ac-cess, and the best ways to reach out to unidentified MCs both at Title IVprograms and also in the wider community.
Provider focus groups can also help Title IV staff to examine theirown attitudes about serving MCs and the extent to which Title IV ser-vice providers are aware of MCs’ service needs. Social service provid-ers sometimes ignore fathers and fail to gather basic information aboutthem (O’Donnell, 1999). This could cause some MCs to feel that pro-viders view them as either uninterested or uninvolved in their children’scare (King, King, & Rosenbaum, 1996).
The HIV/AIDS Bureau of the Health Resources and Services Ad-ministration (HRSA) can promote policy and programs that directly ad-dress the special support service needs of male caretakers. This could beachieved at the policy level by more explicitly acknowledging the exis-tence of these men instead of subsuming them in policy statements un-der the general category of families. Including male caretakers as acategory for data collection would be a first step in this process. HRSAmight also consider policy aimed at identifying males in the communitywho can serve as paternal role models for HIV-infected and affectedchildren. This is important to do as more HIV-infected mothers die orbecome too ill to care for their children.
Study Limitations and Need for Future Research
Our results have several limitations. The proportion of Title IV pro-grams that returned the survey was small (43%) and may well have beenbiased. Those with significant numbers of fathers or with some specialinterest in that population were probably the most likely to respond.This would lead to an overestimation of the number of MCs expected tobe present at other Title IV programs and influence our perception ofthe special service needs of male caretakers. Some programs did not an-swer all the questions, probably because many projects do not routinelycollect data on MCs. Also, we surveyed service providers who offered
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us subjective impressions. We did not survey MCs themselves. Pro-grams indicate that they know that MCs exist and report that they offerservices to these men, but the programs surveyed were unable to pro-vide much detailed information about MCs and their service needs. Thetotal number of HIV-infected children in the care of MCs at all Title IVprograms is still unknown.
The degree to which MCs need special services requires further in-vestigation. The total number of male caretakers who presently utilizeTitle IV program services, who are clients at other family-centeredHIV/AIDS programs around the country, or who may be receiving noservices whatsoever remains unknown. We need further informationthat describes providers’ views from a larger number and a wider vari-ety of Title IV providers than we were able to study. This will increaseknowledge of the range of perspectives providers hold about MCs’ sup-port service needs. It is also necessary to assess the extent to which TitleIV programs are able and willing to experiment with organizational andstructural change in an effort to reach out to more MCs.
It is important to survey male primary caretakers themselves, notonly providers, to determine what fathers have to say about their serviceneeds, and about their parenting experiences. It is also necessary togather information from MCs about how they enter into the role of maleprimary caretakers, how they socialize their children, and how theyview access to services at Title IV programs. Such information couldthen be used to target and strengthen services provided to MCs.
Date Received: 12/19/02Accepted for Publication: 01/23/03
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