Counsellor self-reported fidelity to the intervention was high with a mean of 98.47% (SD = 0.02, range 93–100) of the FSI content delivered to families. Counsellors rated the quality of the content delivery as very good, with almost all content delivery rated as going ‘Well’ (mean = 1.95, SD = 0.06).
Postintervention qualitative interviews were conducted with all 26 caregivers and 32 of 35 youth in the 18 families who completed the intervention. Of the 58 participants, 57 (98.28%) indicated that they were satisfied or very satisfied with the FSI. Almost two-thirds of participants (65.52%) reported that they did not have any concerns with the FSI. Of those reporting concerns, reasons most frequently pertained to the time the intervention and assessments took and a desire for material support. One mother shared:
‘It's really good to talk but …we need something to lift up my life, our life conditions. It is good to be unified and cooperate in the family even communicate in good ways but also we need another help. [referring to needs for material support]’
‘Yes there were a few problems associated with getting the family together because some of the children were at school and it was hard for us to pick them from school sometimes, but most of the time his father picked them from school and it was ok’.
Some participants also mentioned that community members perceived the home-visiting team as bringing them material support that led to jealously ‘Yes community members always thought you had brought us things and money every time you came for the intervention … They are not happy thinking that you bring money for us’.
Above all, the FSI proved to be both acceptable and successful in working with families on the four core components. As one father shared, the FSI empowered him: ‘I got stronger. After the [FSI] sessions, I felt like no matter how hard life gets, one can always overcome the problems they face’. Another single-mother shared how the FSI allowed her to open up to her children about HIV and AIDS:
‘I asked them [my children] what the most interesting thing was for them ever since [the counselor] came … My son says, “Mama the conversations about HIV and AIDS were very good”. So I also join them and we talk about it [HIV]’.
Promoting two-way communication between children and caregivers is a core FSI component and one child shared how the FSI helped him and his parents communicate more effectively:
‘My family was unable to talk to me but when the counsellor came to talk to us, we were able to talk to our parents and we have been close to them and communicate without problems [now]’.
Children and their caregivers both expressed appreciation for the FSI and provided examples of how it helped bring family members closer and taught them how to communicate with one another.
According to caregivers, youth protective factors of family connectedness, good parenting, child pro-social behaviour and caregiver social support improved significantly from preintervention to postintervention, and changes were sustained and showed continued improvement at the 6-month follow-up. In addition, caregiver-reported youth perseverance/self-esteem was higher at 6-month follow-up than at preintervention. Youth-reported social support and parental use of harsh punishment also improved significantly from pre to postintervention and improvements were sustained at 6 months of follow-up. Caregiver-reported harsh punishment was also lower at 6-month follow-up than at preintervention (see Table 4 for complete results). The number of children who scored in the clinical range for depression decreased from five of 32 (15.63%) at baseline to four of 31 (12.90%) at postassessment, to three of 33 (9.09%) at follow-up. The number of children whom caregivers rated in the clinical range for depression decreased from five of 37 (13.51%) at baseline, to three of 34 (8.82%) at postassessment, to zero of 34 at follow-up. According to caregivers, youth-internalizing symptoms (depression, anxiety/depression and irritability) also improved from preintervention to 6-month follow-up. There were no reported improvements in youth conduct problems or functional impairment. Although youth self-reports of symptoms showed trajectories of improvement over time, they did not reach the P less than 0.05 level of significance. Such outcomes may be more fully captured in future trials with larger samples.
This open trial indicates initial feasibility and acceptability of the FSI for promoting improved caregiver–child relationships, family communication and reducing risks for emotional and behavioural problems in vulnerable children affected by HIV and AIDS in Rwanda. Our results indicate that caregiver-reported improvements in children's pro-social behaviour, family connectedness, good parenting and social support were sustained and strengthened from postintervention to 6-month follow-up. Caregiver-reported child perseverance/self-esteem also improved, and symptoms of depression, anxiety and irritability in children declined at 6-month follow-up. Caregiver and child-reported harsh punishment also decreased significantly at 6-month follow-up. These initial results will need to be further tested in well powered effectiveness trials.
Our results resonate with those of other family-focused interventions that have shown promise for HIV-prevention in South Africa  and for HIV-affected families in the United States [25,58,59] and Asia [60,61]. The FSI expands upon these important interventions by extending a focus to family-based mental health promotion for school-age children affected by HIV in rural sub-Saharan Africa using a family home visiting model. The home-visiting nature of the intervention enhances access by allowing counsellors to reach many vulnerable children at once and decreases barriers such as child care and transportation challenges that many vulnerable families face when trying to access healthcare or centre-based psychosocial interventions. As routine HIV services are increasingly available across many low-resource settings, in situations in which HIV-positive adults have children in the home, such FBPIs can act to strengthen parent–child relationships, provide accurate information on HIV and AIDS, help families draw from their own inherent resilience and better navigate both formal and informal support structures. In future research, the FSI model could be further adapted to integrate elements of early childhood stimulation, nutrition and hygiene to help expand the reach of early childhood development (ECD) interventions to vulnerable children and families through family-home visiting models.
In addition, this open trial served to refine the FSI on the basis of the experiences of both participants and the counsellors, which strengthened the quality of the FSI manual as well as intervention delivery tools for future implementation, evaluation and diffusion. Although results are promising, study limitations must be noted. Although counsellors reported that rates of participation were strong and that the intervention could be successfully delivered, we do not have independent measures of attendance or feasibility. Such data collection is essential in future trials of the FSI. In addition, as a feasibility trial, this research did not involve a control group and was not adequately powered to detect small changes over time. However, even with limited statistical power, our models detected significant changes both immediately posttreatment and at 6-month follow-up and successfully demonstrated the acceptability and feasibility of a home-visiting preventive intervention. Although initial results are promising, future research should investigate intervention effectiveness, costs and maintenance of effects longitudinally.
Children affected by caregiver HIV remain largely overlooked in the global response to the HIV and AIDS pandemic. FBPIs have an important role to play in reducing emotional and behavioural problems and improving overall functioning in families affected by HIV and AIDS. Interventions such as the FSI have much promise in sub-Saharan Africa and should be investigated further in effectiveness and implementation research.
This study was funded by a grant from the National Institute of Mental Health (R34 MH084679) and the Julie Henry Junior Faculty Development Fund of the Harvard School of Public Health. The work was made possible by the collaboration of the Honorable Minister of Health of Rwanda, Agnes Binagwaho and Yvonne Kayiteshonga of the Rwanda Biomedical Center/Ministry of Health. We are grateful to Robert Brennan of the Harvard School of Public Health for providing statistical expertise. Theresa Betancourt obtained funding, supported intervention development and interpretation of the data, and provided clinical supervision. Lauren Ng contributed significantly to writing and data interpretation and provided clinical supervision. Catherine Kirk oversaw intervention implementation and data collection and made significant intellectual contributions to the manuscript content. Morris Munyanah, Christina Mushashi, Charles Ingabire and Sharon Teta supported intervention development, data collection, intervention delivery and made significant intellectual contributions to intervention and manuscript content. William Beardslee developed the original intervention and supported adaptation to Rwanda, provided clinical supervision and contributed significant writing and revisions for intellectual context. Robert Brennan contributed to study concept and design, data analysis, interpretation of the data and drafting of the manuscript. Ista Zahn conducted data analyses and contributed to data interpretation. Sara Stulac, Felix Cyamatare and Vincent Sezibera supported clinical supervision during intervention delivery and contributed to intervention adaptation and writing.
This study was funded by a grant from the National Institute of Mental Health (R34 MH084679) and the Julie Henry Junior Faculty Development Fund of the Harvard School of Public Health.
The authors have no conflicts of interest to report.
1. UNAIDS. Report on the Global AIDS Epidemic. Geneva, Switzerland: UNAIDS; 2012.
2. UNICEF. Children and AIDS: fifth stocktaking report. New York, NY: UNICEF, UNAIDS, World Health Organization, UNFPA, UNESCO; 2010.
3. Allison S. Pequegnat W. The role of families among orphans and vulnerable children in confronting HIV/AIDS in Sub-Saharan Africa
. Family and HIV/AIDS: cultural and contextual issues in prevention and treatment
. Blue Bell, PA:Springer Science + Business Media; 2012. 173–194.
4. Doku P. Parental HIV/AIDS status and death, and children's psychological wellbeing
. Int J Mental Health Syst
5. Cluver LD, Orkin M, Gardner F, Boyes ME. Persisting mental health problems among AIDS-orphaned children in South Africa
. J Child Psychol Psychiatry
6. Institute of Security Studies, Richter L. The impact of HIV/AIDS on the development of children [Monograph No 109]
. A generation at risk? HIV/AIDS, vulnerable children and security in Southern Africa Ed Pretoria PR, editor
7. Forehand R, Jones DJ, Kotchick BA, Armistead L, Morse E, Morse PS, et al. Noninfected children of HIV-infected mothers: a 4-year longitudinal study of child psychosocial adjustment and parenting
. Behav Ther
8. Makame V, Ani C, Grantham-McGregor S. Psychological well being of orphans in Dar El Salaam
. Tanzania Acta Paediatr
9. Murphy DA, Greenwell L, Mouttapa M, Brecht ML, Schuster MA. Physical health of mothers with HIV/AIDS and the mental health of their children
. J Dev Behav Pediatr
10. Lester P, Jane Rotheram-Borus M, Lee S-J, Comulada S, Cantwell S, Wu N, et al. Rates and predictors of anxiety and depressive disorders in adolescents of parents with HIV
. Vulnerable Child Youth Stud
11. Giaconia RM, Reinherz HZ, Silverman AB, Pakiz B, Frost AK, Cohen E. Traumas and posttraumatic stress disorder in a community population of older adolescents
. J Am Acad Child Adolesc Psychiatry
12. Courtois CA. Complex trauma, complex reactions: assessment and treatment
. Psychol Trauma
13. UNAIDS. Country report: Rwanda. United Nations General Assembly Special Session (UNGASS), Rwanda; 2007.
15. Smith DN. The psychocultural roots of genocide. Legitimacy and crisis in Rwanda
. Am Psychol
16. Rochat T, Mkwanazi N, Bland R. Maternal HIV disclosure to HIV-uninfected children in rural South Africa: a pilot study of a family-based intervention
. BMC Public Health
17. Visser M, Finestone M, Sikkema K, Boeving-Allen A, Ferreira R, Eloff I, et al. Development and piloting of a mother and child intervention to promote resilience in young children of HIV-infected mothers in South Africa
. Eval Program Plann
18. Ministry of Gender Family Promotion. A situation analysis of orphans and other vulnerable children in Rwanda. Rwanda: Rwanda Go. Kigali; 2008.
19. Daud A, Skoglund E, Rydelius P. Children and families of torture victims: transgenerational transmission of parents’ traumatic experiences to their children
. Int J Soc Welf
20. UNAIDS. Country progress report: Rwanda. Geneva, Switzerland: UNAIDS; 2012.
21. Farmer PE, Nutt CT, Wagner CM, Sekabaraga C, Nuthulaganti T, Weigel JL, et al. Reduced premature mortality in Rwanda: lessons from success
22. Rich ML, Miller AC, Niyigena P, Franke MF, Niyonzima JB, Socci A, et al. Excellent clinical outcomes and high retention in care among adults in a community-based HIV treatment program in rural Rwanda
. J Acquir Immune Defic Syndr
23. Denison JA, McCauley AP, Dunnett-Dagg WA, Lungu N, Sweat MD. HIV testing among adolescents in Ndola, Zambia: how individual, relational, and environmental factors relate to demand
. AIDS Educ Prev
24. Biddlecom A, Awusabo-Asare K, Bankole A. Role of parents in adolescent sexual activity and contraceptive use in four African countries
. Int Perspect Sex Reprod Health
25. Rotheram-Borus MJ, Lee M, Leonard N, Lin YY, Franzke L, Turner E, et al. Four-year behavioral outcomes of an intervention for parents living with HIV and their adolescent children
26. Rochat TJ, Bland T, Coovadia H, Stein A, Newell ML. Towards a family-centered approach to HIV treatment and care for HIV-exposed children, their mothers and their families in poorly resourced settings
. Future Virol
27. Collins PY, Holman AR, Freeman MC, Patel V. What is the relevance of mental health to HIV/AIDS care and treatment programs in developing countries? A systematic review
. AIDS (London, England)
28. Betancourt TS, Meyers-Ohki S, Stevenson A, Ingabire C, Kanyanganzi F, Munyana M MC, et al. Using mixed-methods research to adapt and evaluate a family strengthening intervention in Rwanda
. Afr J Trauma Stress
29. Betancourt TS, Rubin-Smith J, Beardslee WR, Stulac S, Fayida I, Safren S. Understanding locally, culturally, and contextually relevant mental health problems among Rwandan children and adolescents affected by HIV/AIDS
. AIDS Care
30. Betancourt TS, Meyers-Ohki SE, Stulac SN, Barrera AE, Mushashi C, Beardslee WR. Nothing can defeat combined hands (Abashize hamwe ntakibananira): protective processes and resilience in Rwandan children and families affected by HIV/AIDS
. Soc Sci Med
31. Beardslee WR. Prevention and the clinical encounter
. Am J Orthopsychiatry
32. Beardslee WR, Gladstone TR, Wright EJ, Cooper AB. A family-based approach to the prevention of depressive symptoms in children at risk: evidence of parental and child change
33. Beardslee WR, Salt P, Versage EM, Gladstone TR, Wright EJ, Rothberg PC. Sustained change in parents receiving preventive interventions for families with depression
. Am J Psychiatry
34. D’Angelo EJ, Llerena-Quinn R, Shapiro R, Colon F, Rodriguez P, Gallagher K, et al. Adaptation of the preventive intervention program for depression for use with predominantly low-income Latino families
. Fam Process
35. Podorefsky DL, McDonald-Dowdell M, Beardslee WR. Adaptation of preventive interventions for a low-income, culturally diverse community
. J Am Acad Child Adolesc Psychiatry
36. Beardslee WR, Paez-Soto A, Herrera-Amighetti LD, Montero F, Herrera HC, Llerena-Quinne R, et al. Adaptation of a preventive intervention approach to strengthen families facing adversities, especially depression. Costa Rica: initial systems approaches and a case example
. Int J Ment Health Promot
37. Sparrow J, Armstrong MI, Bird C, Grant E, Hilleboe S, Olson-Bird B. Sarche MC, Spicer P, Farrel P, Fitzgerald E, et al. Community-based interventions for depression in parents and other caregivers on a northern plains native American reservation
. American Indian and Alaska native children and mental health: development, context, prevention, and treatment
. Denver, CO:Praeger; 2011. 205–233.
38. Beardslee WR, Versage EM, Wright EJ, Salt P, Rothberg PC, Drezner K, et al. Examination of preventive interventions for families with depression: evidence of change
. Dev Psychopathol
39. Beardslee WR, Versage EM, Gladstone TR. Children of affectively ill parents: a review of the past 10 years
. J Am Acad Child Adolesc Psychiatry
40. Beardslee WR, Wright EJ, Gladstone TRE, Forbes P. Long-term effects from a randomized trial of two public health preventive interventions for parental depression
. J Fam Psychol
41. Riley AW. Evidence that school-age children can self-report on their health
. Ambul Pediatr
42. Dedoose Version 4.5, web application for managing, analyzing, and presenting qualitative and mixed method research data (2013). Los Angeles, CA: SocioCultural Research Consultants, LLC (www.dedoose.com
43. Scorza P, Stevenson A, Canino G, Mushashi C, Kanyanganzi F, Munyanah M, et al. Validation of the ‘World Health Organization Disability Assessment Schedule for Children, WHODAS-Child’ in Rwanda
. PLoS One
44. Messam T, McKay MM, Kalogerogiannis K, Alicea S. Hope Committee Champ Collaborative Board MHHC. adapting a family-based HIV prevention program for homeless youth and their families: the HOPE (HIV prevention Outreach for Parents and Early adolescents) Family Program
. J Hum Behav Soc Environ
45. Connor KM, Davidson JRT. Development of a new resilience scale: the Connor-Davidson Resilience Scale (CD-RISC)
. Depress Anxiety
46. UNICEF. Multiple Indicator Cluster Surveys (MICS): household questionnaire. UNICEF; 2010.
47. Barrera M, Sandler IN, Ramsay TB. Preliminary development of a scale of social support: studies on college students
. Am J Commun Psychol
48. Steinberg AM, Brymer M, Decker K, Pynoos RS. The UCLA PTSD reaction index
. Curr Psychiatry Rep
49. Faulstich M, Carey MP, Ruggiero L. Assessment of depression in childhood and adolescence: an evaluation of the Center for Epidemiological Studies Depression Scale for Children (CES-DC)
. Am J Psychiatry
50. Betancourt TS, Scorza P, Meyers-Ohki S, Mushashi C, Kayiteshonga Y, Binagwaho A, et al. Validating the Center for Epidemiological Studies Depression Scale for Children in Rwanda
. J Am Acad Child Adolesc Psychiatry
51. Achenbach TM, Dumenci L. Advances in empirically based assessment: revised cross-informant syndromes and new DSM-oriented scales for the CBCL, YSR, and TRF: comment on Lengua, Sadowksi, Friedrich, and Fischer (2001)
. J Consult Clin Psychol
52. Craig KJ, Hietanen H, Markova IS, Berrios GE. The irritability questionnaire: a new scale for the measure of irritability
. Psychiatry Res
53. National Institute of Statistics of Rwanda (NISR). Rwanda demographic and health survey 2005. Calverton, MD: NISR, ORC Macro; 2006.
54. Raudenbush SW, Bryk AS. Hierarchical linear models: applications and data analysis methods
. London:Sage Publication:2002.
55. Singer J, Willett J. Applied longitudinal data analysis
. New York:Oxford University Press; 2003.
56. R Development Core Team. R: a language and environment for statistical computing. R Foundation for Statistical Computing. Vienna, Austria; 2008.
57. Bhana A, McKay MM, Mellins C, Petersen I, Bell C. Family-based HIV prevention and intervention services for youth living in poverty-affected contexts: the CHAMP model of collaborative, evidence-informed programme development
. J Int AIDS Soc
58. Rotheram-Borus MJ, Stein JA, Lester P. Adolescent adjustment over six years in HIV-affected families
. J Adolesc Health
59. Rotheram-Borus MJ, Lee MB, Gwadz M, Draimin B. An intervention for parents with AIDS and their adolescent children
. Am J Public Health
60. Li L, Ji G, Liang L, Ding Y, Tian J, Xiao Y. A mutilevel intervention for HIV-Affected families in China
. Soc Sci Med
61. Li L, Liang L, Lee S, Iamsirithawron S, Rotherham-Borus Wan. Efficacy of an intervention for families living with HIV in Thailand: a randomized controlled trial
. AIDS Behav