Publications by authors named "Joan E Haase"

58 Publications

Parents' Experiences of Having a Young Child With Acute Lymphoblastic Leukemia in China.

J Pediatr Oncol Nurs 2020 Nov 30:1043454220975463. Epub 2020 Nov 30.

School of Nursing, Indiana University, Indianapolis, IN, USA.

Background: Understanding parents' experiences is a prerequisite to developing interventions that are sensitive to needs of children and families. In China, little is known about parental experiences of having a young child with acute lymphoblastic leukemia (ALL). This phenomenological study aimed to describe parental experiences of having a young child with ALL in China.

Method: Ten parents, recruited in central China using purposive sampling, participated in face-to-face, in-depth interviews using Haase's adaptation of Colaizzi's phenomenological method.

Results: Five theme categories were identified: (a) The Cancer Diagnosis as a Terrible Disaster-The Sky is Falling, (b) Fighting the Beast, (c) Putting on a Happy Face and Other Coping Strategies, (d) Diagnosis Disclosure: If We Tell and How to Tell, and (e) Hope-Filled Expectations: Returning to Normal Life.

Conclusion: Parents put their child's health as their top priority. They strive to manage uncertainty about prognosis and cope with enormous pressures caused by children's suffering, financial burden, and stigma. Parents also express their resilience and hope throughout their child's cancer journey. Support services to strengthen specific families' protective factors (i.e., family/community support, hope, and positive coping) are needed to foster resilience and quality of life. Health care professionals should systematically assess parents' needs, provide validated education materials, and implement tailored interventions across the cancer continuum. Public education and advocacy about cancer is also necessary to decrease cancer-related stigma, and provide financial aid and health care resources in pediatric oncology.
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http://dx.doi.org/10.1177/1043454220975463DOI Listing
November 2020

Active Music Engagement and Cortisol as an Acute Stress Biomarker in Young Hematopoietic Stem Cell Transplant Patients and Caregivers: Results of a Single Case Design Pilot Study.

Front Psychol 2020 2;11:587871. Epub 2020 Nov 2.

Riley Hospital for Children at Indiana University Health, Indianapolis, IN, United States.

This paper reports the results of a single case design pilot study of a music therapy intervention [the Active Music Engagement (AME)] for young children (age 3.51 to 4.53 years) undergoing hematopoietic stem cell transplantation (HCST) and their caregivers. The primary aims of the study were to determine feasibility/acceptability of the AME intervention protocol and data collection in the context of HCST. Secondary aims were to examine caregivers' perceptions of the benefit of AME and whether there were changes in child and caregiver cortisol levels relative to the AME intervention. Results indicated that the AME could be implemented in this context and that data could be collected, though the collection of salivary cortisol may constitute an additional burden for families. Nevertheless, data that were collected suggest that families derive benefit from the AME, which underscores the need for devising innovative methods to understand the neurophysiological impacts of the AME.
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http://dx.doi.org/10.3389/fpsyg.2020.587871DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7667234PMC
November 2020

The experiences of health-care providers during the COVID-19 crisis in China: a qualitative study.

Lancet Glob Health 2020 06 29;8(6):e790-e798. Epub 2020 Apr 29.

Department of Nursing, School of Health Sciences, Wuhan University, Wuhan, China; Population and Health Research Center, Wuhan University, Wuhan, China. Electronic address:

Background: In the early stages of the outbreak of coronavirus disease 2019 (COVID-19) in Hubei, China, the local health-care system was overwhelmed. Physicians and nurses who had no infectious disease expertise were recruited to provide care to patients with COVID-19. To our knowledge, no studies on their experiences of combating COVID-19 have been published. We aimed to describe the experiences of these health-care providers in the early stages of the outbreak.

Methods: We did a qualitative study using an empirical phenomenological approach. Nurses and physicians were recruited from five COVID-19-designated hospitals in Hubei province using purposive and snowball sampling. They participated in semi-structured, in-depth interviews by telephone from Feb 10 to Feb 15, 2020. Interviews were transcribed verbatim and analysed using Haase's adaptation of Colaizzi's phenomenological method.

Findings: We recruited nine nurses and four physicians. Three theme categories emerged from data analysis. The first was "being fully responsible for patients' wellbeing-'this is my duty'". Health-care providers volunteered and tried their best to provide care for patients. Nurses had a crucial role in providing intensive care and assisting with activities of daily living. The second category was "challenges of working on COVID-19 wards". Health-care providers were challenged by working in a totally new context, exhaustion due to heavy workloads and protective gear, the fear of becoming infected and infecting others, feeling powerless to handle patients' conditions, and managing relationships in this stressful situation. The third category was "resilience amid challenges". Health-care providers identified many sources of social support and used self-management strategies to cope with the situation. They also achieved transcendence from this unique experience.

Interpretation: The intensive work drained health-care providers physically and emotionally. Health-care providers showed their resilience and the spirit of professional dedication to overcome difficulties. Comprehensive support should be provided to safeguard the wellbeing of health-care providers. Regular and intensive training for all health-care providers is necessary to promote preparedness and efficacy in crisis management.

Funding: National Key R&D Program of China, Project of Humanities and Social Sciences of the Ministry of Education in China.
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http://dx.doi.org/10.1016/S2214-109X(20)30204-7DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7190296PMC
June 2020

A Pilot Study of the Effects of COMPLETE: A Communication Plan Early Through End of Life, on End-of-Life Outcomes in Children With Cancer.

J Pain Symptom Manage 2020 08 18;60(2):417-421. Epub 2020 Apr 18.

Indiana University School of Nursing, Indianapolis, Indiana, USA.

Context: Most children with cancer die in hospital settings, without hospice, and many suffer from high-intensity medical interventions and pain at end of life (EOL).

Objectives: To examine the effects of COMPLETE: a communication plan early through EOL to increase hospice enrollment in children with cancer at EOL.

Methods: This is a two-phase, single-arm, two-center, and prospective pilot study of hospice enrollment in children with cancer whose parents received COMPLETE. COMPLETE is a series of medical doctor (MD)/registered nurse (RN)-guided discussions of goals of care using visual aids that begin at diagnosis. COMPLETE training for MD/RNs in Phase II was revised to increase their use of empathy. Preintervention/postintervention measurements for child include: time of hospice enrollment, pain, high-intensity medical interventions at EOL, and location of death; and for parent the following: uncertainty and hope.

Results: Twenty-one parents of 18 children enrolled in the study, and 13 children were followed through EOL. At EOL, 11 (84.6%) died on home hospice or inpatient hospice, and only two (15%) received high-intensity medical interventions. Similar to published findings in the initial 13 parents enrolled in Phase I, parents in Phase II (n = 7) had improvement in hope and uncertainty, and child pain was decreased. Revised training resulted in significant improvement in MD/RN (N = 6) use of empathy (11% in Phase I vs. 100% in Phase II; P = 0.001).

Conclusion: COMPLETE resulted in increased hospice enrollment in children with cancer at EOL compared with historical controls. In preanalysis/postanalysis, COMPLETE decreased child pain while supporting hope and reducing uncertainty in their parents.
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http://dx.doi.org/10.1016/j.jpainsymman.2020.03.033DOI Listing
August 2020

Predictors of resilience among adolescent disaster survivors: A path analysis.

J Adv Nurs 2020 Apr 17. Epub 2020 Apr 17.

School of Nursing, College of Nursing, Taipei Medical University, Taipei, Taiwan.

Aims: To investigate a theoretical model of risk and protective factors to predict resilience among adolescent disaster survivors.

Design: A cross-sectional study.

Methods: Parent's consent and student's informed consent forms were distributed at seven schools in a postdisaster setting (Yogyakarta, Indonesia) between July-October 2017; those who agreed to participate had to complete the self-reported questionnaires. Demographic data were evaluated using descriptive statistical analyses and relationships among study variables were determined using a path analysis.

Results: Results of the model test analysis indicated that six of the seven the hypothesized paths were supported by data from our samples and demonstrated significance on the path coefficients (p < .01). One path coefficient on the association between posttraumatic stress disorder (PTSD) symptoms and resilience was found to be insignificant (β = -0.002, p > .05). However, overall, our hypothesized model was retained, indicating empirical support and adequate model's fit indices for the theoretical model.

Conclusions: Overall, the findings demonstrated the predictive roles of risk and protective factors in adolescent disaster survivors' resilience.

Impact: Resilience is known to be an important concept in recovering from long-term impacts following a disaster in adolescent populations, but its risk and protective factors have not been adequately explored. We found that PTSD symptoms influenced how adolescent disaster survivors developed defensive coping, social support had an indirect effect on resilience through courageous coping and defensive coping acted as a mediator between PTSD symptoms and courageous coping. These findings can help mental health professionals (i.e., community mental health nurses) promote intervention strategies to enhance resilience through improving coping skills in adolescent populations exposed to a disaster.
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http://dx.doi.org/10.1111/jan.14396DOI Listing
April 2020

Cortisol as an Acute Stress Biomarker in Young Hematopoietic Cell Transplant Patients/Caregivers: Active Music Engagement Protocol.

J Altern Complement Med 2020 May 19;26(5):424-434. Epub 2020 Feb 19.

Indiana University School of Nursing, Indianapolis, IN, USA.

Primary aims of the proposed protocol are to determine the feasibility/acceptability of the active music engagement intervention protocol during hematopoietic stem cell transplantation (HSCT) and clinical feasibility/acceptability of the biological sample collection schedule. The authors propose a single-case, alternating treatment design to compare levels of child and caregiver cortisol in blood and saliva collected on alternating days, when the dyad receives and does not receive AME sessions. Included are the scientific rationale for this design and detailed intervention and sample collection schedules based on transplant type. Pediatric inpatient HSCT unit. Eligible participants are dyads of children 3-8 years old, hospitalized for HSCT, and their caregiver. Children with malignant and nonmalignant conditions will be eligible, regardless of transplant type. AME intervention is delivered by a board-certified music therapist who tailors music-based play experiences to encourage active engagement in, and independent use of, music play to manage the inter-related emotional distress experienced by children and their caregivers during HSCT. Dyads will receive two 45-min AME sessions each week during hospitalization. Eight collections of blood (child) and saliva (child/caregiver) will be performed for cortisol measurement. The authors will also collect self-report and caregiver proxy measures for dyad emotional distress, quality of life, and family function. At study conclusion, qualitative caregiver interviews will be conducted. Planned analyses will be descriptive and evaluate the feasibility of participant recruitment, cortisol collection, planned evaluations, and AME delivery. Analysis of qualitative interviews will be used to gain an understanding about the ease/burden of biological sample collection and any perceived benefit of AME. Behavioral intervention studies examining biological mechanisms of action in pediatric transplant populations are rare. Findings will provide important information about the feasibility/acceptability of collecting cortisol samples during a high-intensity treatment and advance understanding about the use of active music interventions to mitigate child/caregiver distress during the transplant period.
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http://dx.doi.org/10.1089/acm.2019.0413DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7232696PMC
May 2020

Development and Psychometric Evaluation of the Connectedness with Health Care Providers Scale for Adolescents and Young Adults with Cancer.

J Adolesc Young Adult Oncol 2020 04 31;9(2):271-277. Epub 2020 Jan 31.

Indiana University School of Public Health and School of Medicine, Indianapolis, Indiana.

Purposes of this study were to (1) develop an instrument of connectedness with health care providers (HCPs) for adolescents and young adults (AYAs) with cancer (ages 13 to 21 years); (2) evaluate the content validity of the instrument through expert panels; (3) assess the dimensionality of the instrument; (4) evaluate the internal consistency reliability of the instrument; and (5) evaluate the convergent and discriminant validity of the instrument through hypothesis testing. The Connectedness with HCPs Scale (C-HCPS) was developed and evaluated in two phases. Phase I involved generating items, having two expert panels (AYAs and clinicians;  = 13) evaluate the items for content validity, and pretesting the instrument before pilot testing ( = 6). In phase II, the psychometric properties of the instrument (dimensionality, internal consistency reliability, and convergent/discriminant validity) were evaluated ( = 101). The initial exploratory factor analysis revealed that the items separated into two separate instruments. In addition to the C-HCPS, a Disconnectedness with HCPs Scale (D-HCPS) was revealed. The C-HCPS contains 35 items and the D-HCPS contains 11 items. Exploratory factor analysis suggested a five-factor solution for the C-HCPS and a two-factor solution for the D-HCPS. Internal consistency reliability of the C-HCPS and D-HCPS was 0.964 and 0.881, respectively. Good evidence of convergent and discriminant validity was demonstrated through hypothesis testing. Findings indicate that the C-HCPS and D-HCPS are both reliable instruments with good evidence of convergent and discriminant validity. Further exploration of these instruments using confirmatory factor analysis in a larger sample is needed.
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http://dx.doi.org/10.1089/jayao.2019.0067DOI Listing
April 2020

Adolescent/Young Adult Perspectives of a Therapeutic Music Video Intervention to Improve Resilience During Hematopoietic Stem Cell Transplant for Cancer.

J Music Ther 2020 Feb;57(1):3-33

Indiana University, Indianapolis, Indiana, USA.

This empirical phenomenology study reports adolescents/young adults (AYA) experiences of the therapeutic music video (TMV) intervention arm of a randomized controlled clinical trial (Children's Oncology Group; COG-ANUR0631; R01 NR008583) during hospitalization for a hematopoietic stem cell transplant. A purposive subsample of 14 AYA were interviewed using a broad open-ended data-generating question about their TMV intervention experiences. At the end of each interview, we also asked AYA for suggestions on how to improve the TMV. Analysis of the narrative data resulted in four theme categories: (a) An Interwoven Experience of the Transplant and TMV Intervention; (b) TMV as a Guided Opportunity for Reflection, Self-Expression, and Meaning-Making; (c) Telling My Story: The Work of Deriving Meaning; and (d) A Way to Overcome the Bad Side of Cancer. AYA suggestions for improving the TMV are also summarized. Findings provide insight into ways the TMV supports AYA efforts to overcome distress and challenges by providing opportunities to reflect on what is meaningful, connect with others, and explore/identify personal strengths. Findings also inform our understanding about how the TMV may have functioned (i.e., mechanisms of action) to bring about significant change in AYA self-reported outcomes (i.e., positive coping, social support, and family function) for this trial.
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http://dx.doi.org/10.1093/jmt/thz014DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7041545PMC
February 2020

A Systematic Literature Review of the Current State of Knowledge Related to Interventions for Bereaved Parents.

Am J Hosp Palliat Care 2019 Dec 3;36(12):1124-1133. Epub 2019 Jul 3.

4 The IUPUI Research in Palliative and End-of-Life Communication and Training (RESPECT), Indiana University School of Nursing, Indianapolis, IN, USA.

Aims: The purpose of this systematic literature review is to describe the interventions for bereaved parents, evaluate intervention effectiveness through study methodology rigor, replicability, and theoretical foundations.

Methods: We searched MEDLINE via PubMed (1966-2018), CINAHL (1937-present), PsycINFO (1887-present), and Embase (1947-present) using various search words and MeSH terms related to the study purpose. A blinded screening of title/abstract was performed, with conflicting inclusion decisions resolved through group discussions. Matrices for remaining articles were created and discussed among the team. The levels of evidence of the 9 records were rated from very low to high based on the Grading of Recommendations Assessment, Development, and Evaluation guidelines.

Results: Our initial pool included 1025 articles. After the screening of titles/abstracts, 63 articles were retained for full-text reviews. Evaluated based on the inclusion/exclusion criteria, 9 records met the review criteria. Of the 9 records, 1 was graded as very low, 3 low, and 5 low to moderate. The interventions for bereaved parents varied from using single-model interventions such as expressive arts therapy and telephone support to multimodal interventions that combined resources (ie, peer support, resource packets, and health-care support). Only 1 study explicitly illustrated how its bereavement intervention was designed based on the proposed theoretical model.

Conclusions: This review highlights the need for individualized, well-tested, and effective bereavement care interventions to support bereaved parents. In summary, the state of the science on interventions for bereaved parents is poor and much work needs to be done to effectively address the needs of bereaved parents, including both their physical and emotional health needs.
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http://dx.doi.org/10.1177/1049909119858931DOI Listing
December 2019

Improving recruitment and retention of adolescents and young adults with cancer in randomized controlled clinical trials.

Int J Adolesc Med Health 2019 Apr 11. Epub 2019 Apr 11.

Indiana University, School of Nursing, Indianapolis, IN, USA.

Participation of adolescents and young adults (AYAs) with cancer in randomized clinical trials (RCTs) is necessary to advance treatments and psychosocial programs. Exploring AYAs experiences in an RCT will inform strategies to support recruitment and retention. A qualitative design was used to study the experiences of 13 AYAs in the Stories and Music for Adolescent and Young Adult Resilience during Transplant I (SMART I) trial. Key themes included: Weighing the Pros and Cons; Randomization Preferences; Completing Measures; and Worthwhile Experience. The experiences of AYAs during RCTs can bring insights that inform the design and management of AYA trials. Strategies include improving assent/consent processes, design of electronic interfaces and encouraging researcher flexibility.
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http://dx.doi.org/10.1515/ijamh-2018-0215DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7048696PMC
April 2019

Oncology Nurse Managers' Perceptions of Palliative Care and End-of-Life Communication.

J Pediatr Oncol Nurs 2019 May/Jun;36(3):178-190. Epub 2019 Apr 3.

6 Saint Louis University, St. Louis, MO, USA.

The purpose of this study was to describe pediatric oncology nurse managers' (NMs) perspectives of palliative care/end-of-life (PC/EOL) communication. The study, guided by group-as-a-whole theory and empirical phenomenology, was part of a larger, multisite study aimed at understanding pediatric oncology nurses' experiences of PC/EOL communication. Nurses were assigned to focus groups based on length or type of experience (i.e., nurses with <1, 2-5, or >5 years' work experience and NMs). Eleven NMs from three Midwestern pediatric hospitals with large oncology programs participated in one focus group. The participants' mean years of experience was 15.8 in nursing and 12 in pediatric oncology; 90% had a BSN or higher degree; all had supervisory responsibilities. The authors identified 2,912 meaning statements, which were then analyzed using Colaizzi's method. Findings include NMs' overall experience of "Fostering a Caring Climate," which includes three core themes: (1) Imprint of Initial Grief Experiences and Emotions; (2) Constant Vigilance: Assessing and Optimizing Family-Centered Care; and (3) Promoting a Competent, Thoughtful, and Caring Workforce. Findings indicate that pediatric oncology NMs draw on their own PC/EOL experiences and their nursing management knowledge to address the PC/EOL care learning needs of nursing staff and patient/family needs. NMs need additional resources to support nursing staff's PC/EOL communication training, including specific training in undergraduate and graduate nursing programs and national and hospital-based training programs.
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http://dx.doi.org/10.1177/1043454219835448DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7197215PMC
May 2020

Like Prisoners in a War Camp: Adolescents and Young Adult Cancer Survivors' Perspectives of Disconnectedness From Healthcare Providers During Cancer Treatment.

Cancer Nurs 2020 Jan/Feb;43(1):69-77

Author Affiliation: Indiana University School of Nursing, Indianapolis.

Background: Adolescent/young adult (AYA) cancer survivors experience greater psychosocial distress than younger or older adults. To address their psychosocial distress, it is important that healthcare providers (HCPs) foster connectedness with AYAs; however, some HCPs' words and behaviors may actually create a sense of disconnectedness with AYAs.

Objective: The aim of this study was to describe AYA cancer survivors' experiences of disconnectedness from HCPs during cancer treatment.

Methods: This empirical phenomenological study sample included 9 AYA cancer survivors (aged 20-23 years) diagnosed during adolescence. In-person interviews were conducted using a broad data-generating question and analyzed using an adapted Colaizzi's method.

Results: Healthcare providers' behaviors that create disconnectedness include (1) exhibiting a lack of appreciation for AYAs' personhood, (2) inflicting unnecessary harm or discomfort, (3) being apathetic of needs and preferences, (4) treating AYAs like they have minimal rights, (5) speaking in a patronizing manner, (6) ignoring their requests, and (7) failing to be vigilant for basic needs. When AYAs experience disconnectedness, they feel dehumanized, powerless, and a lack of self-determination.

Conclusion: Findings highlight disturbing HCP behaviors that create AYA disconnectedness. Despite generally feeling connected to HCPs, AYA cancer survivors' experiences of disconnectedness leave lingering feelings of anger and resentment, even after treatment ends. Preventing disconnectedness behaviors must be a priority.

Implications For Practice: AYA cancer survivors' can benefit from having the opportunity to share their experiences of disconnectedness and having the chance to be autonomous in their care. Bringing awareness to HCPs about what behaviors cause disconnectedness is essential in preventing the behaviors.
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http://dx.doi.org/10.1097/NCC.0000000000000653DOI Listing
November 2020

Perceived Stress and the Fatigue Symptom Cluster in Childhood Brain Tumor Survivors.

Oncol Nurs Forum 2018 11;45(6):775-785

University of Alabama in Birmingham.

Objectives: To explore and estimate relationships among the elements of the symptom cluster in survivors of brain tumors aged 8-12 years during early survivorship.

Sample & Setting: Child participants completed treatment at least six months and less than six years prior to enrollment at Children's Hospital of Alabama in Birmingham or Cook Children's Medical Center in Fort Worth, Texas.

Methods & Variables: With cross-sectional methods, the authors measured child-perceived stress, sleep-wake disturbance (SWD) (parent report), and fatigue. Children also provided saliva samples for cortisol measurement (stress response) and completed actigraphy sleep monitoring.

Results: Mild to moderate stress, SWD, and fatigue were reported, and a wide range of sleep times and cortisol levels were noted. Meaningful effect sizes in relationships between variables were found.

Implications For Nursing: The stress, SWD, and fatigue symptom cluster in survivorship necessitates routine nursing assessment.
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http://dx.doi.org/10.1188/18.ONF.775-785DOI Listing
November 2018

Well-Being of Child and Family Participants in Phase 1 Pediatric Oncology Clinical Trials.

Oncol Nurs Forum 2018 09;45(5):E67-E97

Indiana University in Indianapolis.

Problem Identification: Pediatric oncology phase 1 clinical trials (P1Ts) are essential to developing new anticancer therapies; however, they raise complex ethical concerns about balancing the need for this research with the well-being of participating children. The purpose of this integrative review was to synthesize and appraise the evidence of how P1T participation, which begins with consent and ends with the transition off the P1T, can affect the well-being (either positively or negatively) of children with cancer. The Resilience in Individuals and Families Affected by Cancer Framework, which has an outcome of well-being, was used to synthesize findings.

Literature Search: Articles on the experiences of child (n = 21) and adult (n = 31) P1T participants were identified through systematic searches.

Data Evaluation: Articles were evaluated on rigor and relevance to P1T participant experiences as high, medium, or low.

Synthesis: Minimal empirical evidence was found regarding the effect of P1T participation on the well-being of children with cancer. Adult P1T participant experiences provide insights that could also be important to children's P1T experiences.

Implications For Practice: To achieve a balanced approach in P1T consent discussions, nurses and healthcare providers who work with children considering participation in a P1T should share the potential effect of participation on participants' well-being.
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http://dx.doi.org/10.1188/18.ONF.E67-E97DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6456727PMC
September 2018

Parental Experiences of Child Participation in a Phase I Pediatric Oncology Clinical Trial: "We Don't Have Time to Waste".

Qual Health Res 2019 04 11;29(5):632-644. Epub 2018 Apr 11.

1 Indiana University-Purdue University Indianapolis, Research in Palliative and End-of-Life Communication and Training (RESPECT) Signature Center, Indianapolis, Indiana, USA.

Children with cancer are only eligible for phase I clinical trials (P1Ts) when no known curative therapy remains. However, the primary aims of P1Ts are not focused on directly benefiting participants. This raises ethical concerns that can be best evaluated by exploring the experiences of participants. An empirical phenomenology study, using an adapted Colaizzi method, was conducted of 11 parents' lived experiences of their child's participation in a pediatric oncology P1T. Study findings were that parents' experiences reflected what it meant to have a child fighting to survive high-risk cancer. Although elements specific to P1T participation were identified, more pervasive was parents' sense of running out of time to find an effective treatment and needing to use time they had with their child well. Even though some problems were identified, overall parents did not regret their child's P1T participation and would recommend P1Ts to other parents of children with cancer.
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http://dx.doi.org/10.1177/1049732318766513DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6167192PMC
April 2019

Parent Perspectives of Receiving Early Information About Palliative and End-of-Life Care Options From Their Child's Pediatric Providers.

Cancer Nurs 2019 Jul/Aug;42(4):E22-E30

Author Affiliations: Saint Louis University School of Nursing (Dr Hendricks-Ferguson), Missouri; and Indiana University School of Nursing (Dr Haase), Indianapolis.

Background: Parents of children diagnosed with cancer may experience decision regret about cancer treatment decisions and dissatisfaction with the perceived clarity in information received from their child's providers.

Objective: The aim of this study was to describe parental perspectives about receiving an early palliative care and end-of-life (PC/EOL) communication intervention titled "Communication Plan: Early through End of Life Intervention" (COMPLETE) from an interprofessional team of physician and registered nurse providers.

Methods: Ten parents participated in semistructured interviews after receiving the COMPLETE intervention. The COMPLETE intervention included 3 sessions delivered shortly after diagnosis and at the next 2 cancer treatment evaluations. Sessions of COMPLETE focused on early PC/EOL care discussions at diagnosis and after tumor response evaluations with their child's providers.

Results: Results included 2 theme categories: (1) COMPLETE nurtures realistic hope and meaningful dialogue by parents connecting with healthcare providers as a dyad, and (2) benefits of COMPLETE helped parents to make informed decisions. In addition, there were offered suggestions to improve COMPLETE.

Conclusion: The COMPLETE intervention provided a unique mechanism to foster early discussions about PC/EOL options between parents and an interprofessional team during the first 6 months of the child's cancer treatment. Future study is needed using a randomized clinical control-group design to evaluate COMPLETE with a large sample of parents.

Implications For Practice: Findings provide promising evidence of parents' preference and receptivity to receive early information about PC/EOL care options for a child with a brain tumor with a poor prognosis. The COMPLETE intervention provided a mechanism to help encourage parental consideration of realistic hoped-for goals for their child's condition and care.
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http://dx.doi.org/10.1097/NCC.0000000000000589DOI Listing
April 2020

A Connectedness Primer for Healthcare Providers: Adolescents/Young Adult Cancer Survivors' Perspectives on Behaviors That Foster Connectedness During Cancer Treatment and the Resulting Positive Outcomes.

J Adolesc Young Adult Oncol 2018 04 5;7(2):174-180. Epub 2017 Dec 5.

Department of Science of Nursing Care, Indiana University School of Nursing , Indianapolis, Indiana.

Purpose: Many healthcare providers (HCPs) struggle to communicate and connect with adolescents and young adults (AYA) with cancer that hinders their ability to adequately assess and address the psychosocial needs of AYA. The purpose of this article is to describe the key behaviors of HCPs AYA perceive as essential to fostering connectedness with them and the outcomes AYA experience from such connectedness.

Methods: The sample for this empirical phenomenological study was nine AYA cancer survivors (aged 20-23 years) who were diagnosed in adolescence. In-person individual interviews were conducted using a broad, data-generating question and analyzed using an adapted Colaizzi's method.

Results: The key behaviors of HCPs AYA perceive as essential to fostering connectedness include (1) exhibiting characteristics of knowing how to connect; (2) being watchful and attentive to AYA needs; (3) displaying a willingness to foster the relationship; (4) using humor; and (5) conveying respect, support, and caring. Outcomes of connectedness for AYA include a sense of being cared about, understood, and respected as unique individuals. In addition, AYA experience a sense of confidence/comfort in expressing themselves to HCPs, anticipation of interacting with HCPs in the future, a sense of gratitude for HCPs, and enhanced well-being.

Conclusion: Findings highlight the specific behaviors HCPs can use to foster connectedness with AYA and the outcomes AYA experience from connectedness. Improving HCPs' ability to connect with AYA and maintain connectedness is essential to identifying and addressing the psychosocial needs of AYA. AYA-HCP connectedness may help reduce the psychosocial distress AYA experience during and after treatment.
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http://dx.doi.org/10.1089/jayao.2017.0056DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5899279PMC
April 2018

Bereaved Parents' Health Status During the First 6 Months After Their Child's Death.

Am J Hosp Palliat Care 2018 Jun 4;35(6):829-839. Epub 2017 Dec 4.

2 Duke University School of Nursing, Durham, NC, USA.

Purpose: To examine bereaved parents' physical, mental, and social health during the first 6 months after their child's (<12 years) death from a life-threatening illness.

Background And Significance: Bereaved parents have higher mortality and morbidity rates when compared to nonbereaved parents. Acute illnesses, hospitalizations, and medication changes are highest in the first 6 months. An understanding of bereaved parents' health risk indicators can help inform development of health promotion and disease prevention measures. Methods and Analysis: A prospective descriptive study examined 8 parent dyads. Parents completed health surveys (Patient-Reported Outcomes Measurement Information System-global, social, and sleep; Brief Symptom Inventory [BSI] 18), which are used to assess parents' health at 3 and 6 months after their child's death. Demographic data included a medical history, hospital or emergency department visits, and smoking and alcohol intake. Descriptive statistics were used to compare parents' scores to US general population scores.

Findings: Mothers' and fathers' physical, mental, and sleep health scores were typically within 1 to 2 standard deviations of the population norms. However, their social health scores were as low as 3 standard deviations and all parents' scores were below population norms. Four (25%) of the 16 parents had new diagnosis during the first 6 months. Based on the BSI-18, 3 parents had their scores above population cutoffs, which warranted a need for further clinical evaluation.

Conclusions: Health data highlight the "at-risk" health status of bereaved parents. Further validation of these data is required to support the development of health promotion and disease prevention programs.
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http://dx.doi.org/10.1177/1049909117744188DOI Listing
June 2018

Connecting with healthcare providers at diagnosis: adolescent/young adult cancer survivors' perspectives.

Int J Qual Stud Health Well-being 2017 Dec;12(1):1325699

c Department of Internal Medicine , Indiana University, School of Medicine Indianapolis , IN United States.

Adolescents and young adults (AYAs) with cancer are a vulnerable and underserved population. AYAs' cancer survivorship is complicated by physical and psychosocial late effects which requires long-term follow-up. Connectedness with healthcare providers (HCPs) is a protective factor that may improve long-term follow-up behaviours of AYAs. However, little is known about AYAs' experiences connecting with HCPs. The purpose of this study was to describe AYA cancer survivors' experiences connecting with HCPs. This empirical phenomenological study interviewed nine AYA cancer survivors diagnosed during adolescence. Individual interviews were conducted and analysed using an adapted Colaizzi approach. The essential structure reveals that AYAs begin their experience of connectedness with a sense of disconnectedness prior to treatment. The diagnosis is a period of confusion and emotional turmoil that interfere with the AYAs' ability to connect. When AYAs come to accept their illness and gain familiarity with the environment, they then put forth an effort to connect with HCPs. Although it takes time for AYAs to reciprocate efforts to connect, HCPs should be aware that AYAs carefully assess and make judgments about whether or not HCPs can be trusted. Findings raise awareness of the actions and behaviours of HCPs that hinder connectedness, and targeted in future research.
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http://dx.doi.org/10.1080/17482631.2017.1325699DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5510205PMC
December 2017

Stories and Music for Adolescent/Young Adult Resilience During Transplant Partnerships: Strategies to Support Academic-Clinical Nurse Collaborations in Behavioral Intervention Studies.

Clin Nurse Spec 2017 Jul/Aug;31(4):195-200

Author Affiliations: Associate Professor (DrHendricks-Ferguson), School of Nursing, Saint Louis University, Missouri; Pediatric Nurse Practitioner (Dr Barnes), Swansea, Illinois; Robert Wood Johnson Foundation Future of Nursing Scholar, PhD Student (Ms Cherven), School of Nursing, University of Alabama at Birmingham; Nurse Researcher (Dr Stegenga), Children's Mercy Hospital, Kansas, Missouri; Consultant (Ms Roll), Department of Pediatrics, The University of Texas Health Science Center at San Antonio, Associate Professor (Dr Docherty), School of Nursing, Duke University, Durham, North Carolina; and Holmquist Professor of Pediatric Oncology Nursing (Dr Haase), School of Nursing, Indiana University, Indianapolis.

Evidence-based nursing is in the forefront of healthcare delivery systems. Federal and state agencies, academic institutions, and healthcare delivery systems recognize the importance of nursing research. This article describes the mechanisms that facilitate nursing partnerships yielding high-level research outcomes in a clinical setting. A phase-II multicenter behavioral intervention study with pediatric stem cell transplant patients was the context of this academic/clinical research partnership. Strategies to develop and maintain this partnership involved a thorough understanding of each nurse's focus and barriers. A variety of communication plans and training events maximized preexisting professional networks. Academic/clinical nurses' discussions identified barriers to the research process, the most significant being role conflict. Communication and validation of benefits to each individual and institution facilitated the research process during challenging times. Establishing strong academic/clinical partnerships should lead to evidence-based research outcomes for the nursing profession, healthcare delivery systems, and patients and families.
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http://dx.doi.org/10.1097/NUR.0000000000000305DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5918340PMC
September 2017

The Resilience in Illness Model Part 2: Confirmatory Evaluation in Adolescents and Young Adults With Cancer.

Cancer Nurs 2017 Nov/Dec;40(6):454-463

Author Affiliations: School of Nursing, Indiana University (Drs Haase, Robb, and Phillips), and Research in Palliative and End-of-Life Communications and Training Signature Center (Drs Haase, Robb, and Burns), Indiana University-Purdue University, Indianapolis (IUPUI); School of Nursing, University of Wisconsin, Madison (Dr Kintner); School of Medicine, Indiana University, Indiana University-Purdue University, Indianapolis (Mr Stump and Dr Monahan); Children's Mercy Hospitals and Clinics, Kansas City, Missouri (Dr Stegenga); and Purdue School of Engineering and Technology, Indiana University-Purdue University, Indianapolis (Dr Burns).

Background: Empirically derived and tested models are necessary to develop effective, holistic interventions to improve positive health outcomes in adolescents and young adults (AYA) with cancer, yet few exist. This article is the second of 2 articles reporting on evaluation of the Resilience in Illness Model (RIM) as a predictive model to guide positive health research and practice.

Objective: The aim of this study was to report the confirmatory model evaluation of the RIM.

Methods: A confirmatory evaluation of RIM was done using baseline data from a sample of 113 AYA aged 11 to 24 years who were undergoing hematopoietic stem cell transplant and enrolled in a randomized controlled trial of a behavioral intervention to enhance resilience. Data were analyzed using latent variable structural equation modeling.

Results: Goodness-of-fit indices supported RIM as a confirmed model that accounted for large amounts of variance in the outcomes of self-transcendence (62%) and resilience (72%), and in 3 of 5 mediators, specifically social integration (74%), courageous coping (80%), and hope-derived meaning (87%), as well as small to moderate amounts of variance in the remaining mediators of defensive coping (1%) and family environment (35%).

Conclusions: Findings establish the RIM as a plausible predictive framework for explaining ways AYA with cancer transcend their illness and achieve resilience resolution and for guiding intervention studies in this population. Additional research is needed to explore RIM's transferability based on stage of illness, other chronic diseases, and cultural diversity.

Implications For Practice: Results support the RIM as an appropriate guide for developing and evaluating interventions to foster positive adjustment in AYA with cancer.
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http://dx.doi.org/10.1097/NCC.0000000000000450DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5471133PMC
December 2017

Pilot Evaluation of a Palliative and End-of-Life Communication Intervention for Parents of Children With a Brain Tumor.

J Pediatr Oncol Nurs 2017 May/Jun;34(3):203-213

2 Indiana University, Indianapolis, IN, USA.

Providing timely palliative and end-of-life care (PC/EOL) information to parents of children with a serious illness is a national health care priority. The goals of this study were to determine feasibility, acceptability, and parent responses related to a PC/EOL communication intervention, titled "Communication Plan: Early through End of Life (COMPLETE)" to parents of children with a brain tumor. The study was a 2-site prospective, single-group pilot study targeting parents' stress and coping outcomes. The sample included 13 parents of 11 children (ie, 11 families). During the first 6 months postdiagnosis, we evaluated parent outcomes at 4 time points (baseline and 3 post-sessions). Our findings included significant decline in decision regret ( P = .0089); strong, significantly increased hope ( P ≤ .0001); and significantly decreased uncertainty ( P = .04). Over time, more than half of the parents (61.5%) preferred to receive information about their child's current condition and PC/EOL options. Our findings provide evidence to suggest that the COMPLETE intervention is feasible and acceptable and produces promising effects on 3 parent outcomes (ie, decision regret, hope, and uncertainty) in parents of children with a brain tumor. Further research is indicated to evaluate COMPLETE with a larger sample of parents of children with cancer and with a control group.
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http://dx.doi.org/10.1177/1043454216676836DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6711580PMC
May 2017

Pilot Randomized Trial of Active Music Engagement Intervention Parent Delivery for Young Children With Cancer.

J Pediatr Psychol 2017 Mar;42(2):208-219

Department of Biostatistics, Indiana University School of Medicine, IN, USA.

Objectives: To examine the feasibility/acceptability of a parent-delivered Active Music Engagement (AME + P) intervention for young children with cancer and their parents. Secondary aim to explore changes in AME + P child emotional distress (facial affect) and parent emotional distress (mood; traumatic stress symptoms) relative to controls.

Methods: A pilot two-group randomized trial was conducted with parents/children (ages 3-8 years) receiving AME + P ( n  =  9) or attention control ( n  =  7). Feasibility of parent delivery was assessed using a delivery checklist and child engagement; acceptability through parent interviews; preliminary outcomes at baseline, postintervention, 30 days postintervention.

Results: Parent delivery was feasible, as they successfully delivered AME activities, but interviews indicated parent delivery was not acceptable to parents. Emotional distress was lower for AME + P children, but parents derived no benefit.

Conclusions: Despite child benefit, findings do not support parent delivery of AME + P.
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http://dx.doi.org/10.1093/jpepsy/jsw050DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5896608PMC
March 2017

Satisfaction With a Family-Focused Intervention for Mild Cognitive Impairment Dyads.

J Nurs Scholarsh 2016 07 27;48(4):334-44. Epub 2016 Apr 27.

Holmquist Professor of Pediatric Oncology Nursing, Department Science of Nursing Care, Indiana University School of Nursing, Indianapolis, IN, USA.

Purpose: This article describes satisfaction that persons with mild cognitive impairment (PwMCI) and their caregivers had with the Daily Enhancement of Meaningful Activity (DEMA) intervention.

Methods: This randomized controlled pilot study compared satisfaction (usefulness, ease of use, and acceptability) with DEMA (n = 17 dyads) to an information support (IS) control group (n = 19 dyads). Six biweekly sessions (two in person and four by telephone) were delivered by trained nurses. Data analysis included descriptive statistics, independent-sample t tests, and content analysis.

Findings: PwMCI receiving DEMA rated their satisfaction significantly higher (p = .033) than did the control group; there was no difference in satisfaction between caregivers across groups. Qualitative interview data supported the usefulness, ease of use, and acceptability of DEMA for both PwMCI and caregivers.

Conclusions: Results documented PwMCI's satisfaction with DEMA as implemented by nurses to support PwMCI-caregiver dyads' engagement in meaningful activity. DEMA may need revision to increase satisfaction for caregivers.

Clinical Relevance: The DEMA intervention was evaluated as useful, easy to use, and acceptable to PwMCI and their caregivers based on positive mean ratings. The study findings provide preliminary support of DEMA as a means to improve quality of life by helping to support patient and caregiver engagement in meaningful activities and problem solving.
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http://dx.doi.org/10.1111/jnu.12214DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4970320PMC
July 2016

Patient Perceptions of Provider and Hospital Factors Associated With New Medication Communication.

West J Nurs Res 2016 09 22;38(9):1139-54. Epub 2016 Apr 22.

Indiana University, Indianapolis, USA.

This research examined provider and hospital factors associated with patients' perceptions of how often explanations of new medications were "always" given to them, using Hospital Consumer Assessment of Healthcare Providers and Systems (HCAHPS) scores. HCAHPS results were obtained for October 2012 to September 2013, from 3,420 hospitals and combined with a Magnet-designated hospital listing. Multiple regression examined correlates of new medication communication, including health care provider factors (perceptions of nurse and physician communication) and health care system factors (magnet designation, hospital ownership, hospital type, availability of emergency services, and survey numbers). Nurse and physician communication was strongly associated with new medication communication (r = .819, p < .001; r = .722, p < .001, respectively). Multivariable correlates included nurse communication (p < .001), physician communication (p < .001), hospital ownership, availability of emergency services, and survey numbers. There was a significant relationship between patients' perceptions of nurse and physician communication and the explanations they had received about their new medications during hospitalization.
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http://dx.doi.org/10.1177/0193945916645097DOI Listing
September 2016

Feasibility and Effect Sizes of the Revised Daily Engagement of Meaningful Activities Intervention for Individuals With Mild Cognitive Impairment and Their Caregivers.

J Gerontol Nurs 2016 Mar;42(3):45-58

A nurse-led intervention, Daily Engagement of Meaningful Activities (DEMA), was evaluated for feasibility and effect sizes in a two-group randomized pilot study with 36 patient-caregiver dyads (17 DEMA and 19 attention control). Effect sizes were estimated on 10 outcomes: dyad functional ability awareness congruence; patients' meaningful activity performance and satisfaction, confidence, depressive symptoms, communication satisfaction, physical function, and life satisfaction; and caregivers' depressive symptoms and life changes. High feasibility of DEMA was supported by the following indicators: consent (97.7%), session completion (91.7%), and Time 3 measure completion (97.2%). Compared to the attention control group, the DEMA group had higher dyad congruence in functional ability awareness and life satisfaction 3 months post-intervention and improved physical function at 2 weeks post-intervention. Although DEMA showed high feasibility and benefits on some health-related outcomes, further testing of DEMA in a larger randomized controlled clinical trial is needed.
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http://dx.doi.org/10.3928/00989134-20160212-08DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4819326PMC
March 2016

In developmental science, there is an essential recognition of the complexity of human development. Introduction.

Semin Oncol Nurs 2015 Aug 6;31(3):183-5. Epub 2015 Jun 6.

Holmquist Professor in Pediatric Oncology Nursing Co-director, Research in Palliative and End-of-Life (RESPECT) Signature Center at IUPUI School of Nursing, Indiana University, Indianapolis, IN.

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http://dx.doi.org/10.1016/j.soncn.2015.06.001DOI Listing
August 2015

Evaluation of Physician and Nurse Dyad Training Procedures to Deliver a Palliative and End-of-Life Communication Intervention to Parents of Children with a Brain Tumor.

J Pediatr Oncol Nurs 2015 Sep-Oct;32(5):337-47. Epub 2015 Jan 26.

Indiana University School of Nursing, Indianapolis, IN, USA.

When a child's prognosis is poor, physicians and nurses (MDs/RNs) often struggle with initiating discussions about palliative and end-of-life care (PC/EOL) early in the course of illness trajectory. We describe evaluation of training procedures used to prepare MD/RN dyads to deliver an intervention entitled: Communication Plan: Early Through End of Life (COMPLETE) intervention. Our training was delivered to 5 pediatric neuro-oncologists and 8 pediatric nurses by a team of expert consultants (i.e., in medical ethics, communication, and PC/EOL) and parent advisors. Although half of the group received training in a 1-day program and half in a 2-day program, content for all participants included 4 modules: family assessment, goal-directed treatment planning, anticipatory guidance, and staff communication and follow-up. Evaluations included dichotomous ratings and qualitative comments on content, reflection, and skills practice for each module. Positive aspects of our training included parent advisers' insights, emphasis on hope and non-abandonment messages, written materials to facilitate PC/EOL communication, and an MD/RN dyad approach. Lessons learned and challenges related to our training procedures will be described. Overall, the MDs and RNs reported that our PC/EOL communication-training procedures were helpful and useful. Future investigators should carefully plan training procedures for PC/EOL communication interventions.
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http://dx.doi.org/10.1177/1043454214563410DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5918283PMC
September 2016

Novice Nurses' Experiences With Palliative and End-of-Life Communication.

J Pediatr Oncol Nurs 2015 Jul-Aug;32(4):240-52. Epub 2015 Jan 2.

Indiana University, School of Nursing, Indianapolis, IN, USA.

Health care providers recognize that delivery of effective communication with family members of children with life-threatening illnesses is essential to palliative and end-of-life care (PC/EOL). Parents value the presence of nurses during PC/EOL of their dying child. It is vital that nurses, regardless of their years of work experience, are competent and feel comfortable engaging family members of dying children in PC/EOL discussions. This qualitative-descriptive study used focus groups to explore the PC/EOL communication perspectives of 14 novice pediatric oncology nurses (eg, with less than 1 year of experience). Audio-taped focus group discussions were reviewed to develop the following 6 theme categories: (a) Sacred Trust to Care for the Child and Family, (b) An Elephant in the Room, (c) Struggling with Emotional Unknowns, (d) Kaleidoscope of Death: Patterns and Complexity, (e) Training Wheels for Connectedness: Critical Mentors during PC/EOL of Children, and (f) Being Present with an Open Heart: Ways to Maintain Hope and Minimize Emotional Distress. To date, this is the first study to focus on PC/EOL communication perspectives of novice pediatric oncology nurses.
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http://dx.doi.org/10.1177/1043454214555196DOI Listing
September 2016

The Enhancing Connections Program: a six-state randomized clinical trial of a cancer parenting program.

J Consult Clin Psychol 2015 Feb 17;83(1):12-23. Epub 2014 Nov 17.

School of Nursing, University of Washington.

Objective: The purpose of this study was to test the efficacy of a cancer parenting program for child rearing mothers with breast cancer, the Enhancing Connections Program. Primary goals were to decrease maternal depressed mood and anxiety, improve parenting quality, parenting skills and confidence, and enhance the child's behavioral-emotional adjustment to maternal breast cancer.

Method: A total of 176 mothers diagnosed within 6 months with Stage 0 to Stage III breast cancer and their 8- to 12-year-old child were recruited from medical providers in 6 states: Washington, California, Pennsylvania, Minnesota, Arizona, and Indiana. After consenting and obtaining baseline measures, study participants were randomized into experimental or control groups. Experimental mothers received 5, 1-hr educational counseling sessions at 2-week intervals; controls received a booklet and phone call on communicating and supporting their child about the mother's cancer. Outcomes were assessed at 2 and 12 months.

Results: Compared to controls, at 2 months experimental mothers significantly improved on depressed mood and parenting skills; experimental children improved on behavioral-emotional adjustment: total behavior problems, externalizing problems, and anxiety/depressed mood significantly declined. At 1 year, experimental children remained significantly less depressed than controls on both mother- and child-reported measures. The intervention failed to significantly affect parenting self-efficacy or maternal anxiety.

Conclusions: The Enhancing Connections Program benefitted mothers and children in specific areas and warrants refinement and further testing.
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http://dx.doi.org/10.1037/a0038219DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5136295PMC
February 2015