Using qualitative and participatory methods to refine implementation strategies: universal family psychosocial screening in pediatric cancer

Janet A Deatrick, Anne E Kazak, Rebecca E Madden, Glynnis A McDonnell, Katherine Okonak, Michele A Scialla, Lamia P Barakat, Janet A Deatrick, Anne E Kazak, Rebecca E Madden, Glynnis A McDonnell, Katherine Okonak, Michele A Scialla, Lamia P Barakat

Abstract

Background: Children with cancer and their families are at risk for short- and long-term psychosocial difficulties. Screening for psychosocial risk remains inconsistent, leading to inequitable access to psychosocial services. The Psychosocial Assessment Tool (PAT) is an evidence-based caregiver report screener of family psychosocial risk ready for implementation in a nationwide cluster randomized trial that will test two implementation strategies across 18 pediatric cancer centers. The current study, conducted in preparation for the trial, solicited the perspectives of key stakeholders about two proposed implementation strategies identified during previous research which focus on health equity and screening of all families (universal screening). Results were used to refine the implementation strategies for testing in the subsequent trial.

Methods: Semi-structured interviews with 19 key stakeholders (parents, health care providers, pediatric oncology organizations, and pediatric healthcare leaders) were conducted regarding the two implementation strategies. Strategy I is a training webinar; Strategy II is training + implementation enhanced resources, which includes a champion at each site and monthly peer support consultation calls. Data were analyzed using directed content analysis with deductively derived codes based on the Interactive Systems Framework and inductive codes based on emerging data.

Results: Stakeholder interviews provided rich data to rigorously modify the proposed implementation strategies. Implementation strategies were modified in consistent with these recommendations: engaging providers by framing family psychosocial screening as an opportunity for more efficient and effective practice; setting clear expectations about the importance of screening 100% of children and their families to achieve the goal of universal screening, equity of care, and reduction of disparities; and adapting successful strategies for systematic implementation of screening to ensure optimal engagement with children and their families throughout their care.

Conclusions: Stakeholder input strengthened implementation strategies by suggesting modifications that emphasized health equity and reduction in health disparities. Using implementation science methods to build on a long-standing program of research provided practical insights about immediate needs of families and historical insights regarding structural inequities such as language differences and access to services. Resulting strategies address all levels of the social ecology for children's cancer care, including the patient, family, provider, healthcare system, and community.

Trial registration: NCT04446728 June 23, 2020.

Keywords: Cancer; Health equity; Health-care delivery; Health-care providers; Implementation; Oncology; Pediatric; Psychosocial Assessment Tool © (PAT); Risk screening.

Conflict of interest statement

The authors declare that they have no competing interests.

Figures

Fig. 1
Fig. 1
Pediatric psychosocial preventative health model
Fig. 2
Fig. 2
Refining the proposed implementation strategies-feedback to team

References

    1. Committee on Psychosocial Services to Cancer Patients/Families in a Community. Adler NE, AEK P, Medicine Io, Board on Health Care Services . Cancer Care for the Whole Patient. Washington, D.C: National Academies Press; 2008.
    1. Nass SJ, Patlak M, Forum NCP, Services, Board on Health Care, Medicine Io, National Academies of Sciences, Engineering, and Medicine . Comprehensive cancer care for children and their families: summary of a joint workshop by the Institute of Medicine and the American Cancer Society. 2015.
    1. Wiener L, Kazak AE, Noll RB, Patenaude AF, Kupst MJ. Standards for psychosocial care for children with cancer and their families: an introduction to the special issue. Pediatr Blood Cancer. 2015;62(S5):S419–S424. doi: 10.1002/pbc.25675.
    1. Kazak AE, Abrams AN, Banks J, Christofferson J, DiDonato S, Grootenhuis MA, Kabour M, Madan-Swain A, Patel SK, Zadeh S, Kupst MJ. Psychosocial assessment as a standard of care in pediatric cancer. Pediatr Blood Cancer. 2015;62(S5):S426–S459. doi: 10.1002/pbc.25730.
    1. Scialla MA, Canter KS, Chen FF, Kolb EA, Sandler E, Wiener L, et al. Implementing the psychosocial standards in pediatric cancer: current staffing and services available. Pediatr Blood Cancer. 2017;64(11):e26634. doi: 10.1002/pbc.26634.
    1. Selove R, Kroll T, Coppes M, Cheng Y. Psychosocial services in the first 30 days after diagnosis: results of a web-based survey of children’s oncology group (COG) member institutions. Pediatr Blood Cancer. 2012;58(3):435–440. doi: 10.1002/pbc.23235.
    1. Kazak AE. Pediatric Psychosocial Preventative Health Model (PPPHM): research, practice, and collaboration in pediatric family systems medicine. Fam Syst Health. 2006;24(4):381–395. doi: 10.1037/1091-7527.24.4.381.
    1. Kazak AE, Schneider S, Didonato S, Pai ALH. Family psychosocial risk screening guided by the Pediatric Psychosocial Preventative Health Model (PPPHM) using the Psychosocial Assessment Tool (PAT) Acta Oncol. 2015;54(5):574–580. doi: 10.3109/0284186X.2014.995774.
    1. Kazak AE, Hwang W, Chen FF, Askins MA, Carlson O, Argueta-Ortiz F, et al. Screening for Family Psychosocial Risk in Pediatric Cancer: Validation of the Psychosocial Assessment Tool (PAT) Version 3. J Pediatr Psychol. 2018;43(7):737–748. doi: 10.1093/jpepsy/jsy012.
    1. Kazak AE, Barakat LP, Askins MA, McCafferty M, Lattomus A, Ruppe N, Deatrick J. Provider perspectives on the implementation of psychosocial risk screening in pediatric cancer. J Pediatr Psychol. 2017;42(6):700–710. doi: 10.1093/jpepsy/jsw110.
    1. Kazak AE, Barakat LP, Hwang W, Ditaranto S, Biros D, Beele D, et al. Association of psychosocial risk screening in pediatric cancer with psychosocial services provided. Psycho-Oncology. 2011;20(7):715–723. doi: 10.1002/pon.1972.
    1. Barrera M, Alexander S, Atenafu EG, Chung J, Hancock K, Solomon A, Desjardins L, Shama W, Mills D. Psychosocial screening and mental health in pediatric cancer: a randomized controlled trial. Health Psychol. 2020;39(5):381–390. doi: 10.1037/hea0000825.
    1. Scialla MA, Canter KS, Chen FF, Kolb EA, Sandler E, Wiener L, et al. Delivery of care consistent with the psychosocial standards in pediatric cancer: current practices in the United States. Pediatr Blood Cancer. 2018;65(3):e26869. doi: 10.1002/pbc.26869.
    1. Kazak AE, Christofferson J, Gutierrez Richards H, Rivero-Conil S, Sandler E. Implementing screening with the Psychosocial Assessment Tool (PAT) in clinical oncology practice. Clin Pract Pediatr Psychol. 2019;7(2):140–150. doi: 10.1037/cpp0000246.
    1. Wandersman A, Duffy J, Flaspohler P, Noonan R, Lubell K, Stillman L, Blachman M, Dunville R, Saul J. Bridging the gap between prevention research and practice: the interactive systems framework for dissemination and implementation. Am J Community Psychol. 2008;41(3-4):171–181. doi: 10.1007/s10464-008-9174-z.
    1. Kazak AE, Deatrick JA, Scialla MA, Sandler E, Madden RE, Barakat LP. Implementation of family psychosocial risk assessment in pediatric cancer with the Psychosocial Assessment Tool (PAT): study protocol for a cluster-randomized comparative effectiveness trial. Implement Sci. 2020;15(1):60. doi: 10.1186/s13012-020-01023-w.
    1. Powell BJ, Waltz TJ, Chinman MJ, Damschroder LJ, Smith JL, Matthieu MM, Proctor EK, Kirchner JE. A refined compilation of implementation strategies: results from the Expert Recommendations for Implementing Change (ERIC) project. Implement Sci. 2015;10:21. doi: 10.1186/s13012-015-0209-1.
    1. Green C, Duan N, Gibbons R, Hoagwood K, Palinkas L, Wisdom J. Approaches to mixed methods dissemination and implementation research: methods, strengths, caveats, and opportunities. Adm Policy Ment Health Ment Health Serv. 2015;42(5):508–523. doi: 10.1007/s10488-014-0552-6.
    1. National Cancer Institute Division of Cancer Control and Population Sciences. Qualitative methods in implementation science. Bethesda: National Institutes of Health; 2015. p. 1–28.
    1. Wolk C, Van Pelt AE, Jager-Hyman S, Ahmedani BK, Zeber JE, Fein JA, et al. Stakeholder perspectives on implementing a firearm safety intervention in pediatric primary care as a universal suicide prevention strategy: a qualitative study. JAMA Netw Open. 2018;1(7):e185309. doi: 10.1001/jamanetworkopen.2018.5309.
    1. Dixon-Woods M, Campbell A, Chang T, Martin G, Georgiadis A, Heney V, Chew S, van Citters A, Sabadosa KA, Nelson EC. A qualitative study of design stakeholders’ views of developing and implementing a registry-based learning health system. Implement Sci. 2020;15(1):16. doi: 10.1186/s13012-020-0976-1.
    1. Bredart A, Marrel A, Abetz-Webb L, Lasch K, Acquadro C. Interviewing to develop Patient Reported Outcome (PRO) measures for clinical research: elicit patients’ experience. Health Qual Life Outcomes. 2014;12(1):15. doi: 10.1186/1477-7525-12-15.
    1. Gilchrist V, Williams R. Key informant interviews. In: Crabtree B, Miller WL, editors. Doing qualitative research. Thousand Oaks: Sage; 1999. pp. 71–88.
    1. Elo S, Kääriäinen M, Kanste O, Pölkki T, Utriainen K, Kyngäs H. Qualitative content analysis. SAGE Open. 2014;4(1):215824401452263. doi: 10.1177/2158244014522633.
    1. Wu YP, Thompson D, Aroian KJ, McQuaid EL, Deatrick J. Writing and evaluating qualitative research reports. J Pediatr Psychol. 2016;41(5):493–505. doi: 10.1093/jpepsy/jsw032.
    1. Creswell JW, Klassen AC, Plano Clark VL, Smith KC. Best Practices for Mixed Methods Research in the Health Sciences. Qualitative research methods in health research: opportunities and considerations in application and review. Bethesda: National Institutes of Health; 2011.
    1. Hsieh H-F, Shannon S. Three approaches to qualitative content analysis. Qualit Heath Res. 2005;15(9):1277–1288. doi: 10.1177/1049732305276687.
    1. Levitt HM, Bamberg M, Creswell JW, Frost DM, Josselson R, Suárez-Orozco C. Journal article reporting standards for qualitative primary, qualitative meta-analytic, and mixed methods research in psychology: the APA Publications and Communications Board task force report. Am Psychol. 2018;73(1):26–46. doi: 10.1037/amp0000151.
    1. Tong A, Sainsbury P, Craig J. Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. International J Qual Health Care. 2007;19(6):349–357. doi: 10.1093/intqhc/mzm042.
    1. Ford-Gilboe M, Wathen CN, Varcoe C, Herbert C, Jackson BE, Lavoie JG, et al. How equity-oriented health care affects health: key mechanisms and implications for primary health care practice and policy. Milbank Q. 2018;96(4):635–671. doi: 10.1111/1468-0009.12349.
    1. Proctor E, Silmere H, Raghavan R, Hovmand P, Aarons G, Bunger A, et al. Outcomes for implementation research: conceptual distinctions, measurement challenges, and research agenda. Adm Policy Ment Health. 2010;38(2):65–76. doi: 10.1007/s10488-010-0319-7.
    1. Patton MQ. Designing qualitative studies. Qualitative Research and Evaluation Methods. 3. Thousand Oaks: Sage Publications Inc.; 2002. pp. 230–246.
    1. Palinkas L, Horwitz S, Green C, Wisdom J, Duan N, Hoagwood K. Purposeful sampling for qualitative data collection and analysis in mixed method implementation research. Adm Policy Ment Health Mental Health Serv. 2015;42(5):533–544. doi: 10.1007/s10488-013-0528-y.

Source: PubMed

스폰서 및 공동 작업자

건강 상태

약물 개입

3
구독하다