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Eche-Ugwu IJ, Mazzola E, Stevens SE, Wolfe J, Feraco AM. Illness Uncertainty in Parents of Children With Cancer-An Exploratory Analysis to Inform Intervention Development. Pediatr Blood Cancer 2025; 72:e31726. [PMID: 40230010 DOI: 10.1002/pbc.31726] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 12/17/2024] [Revised: 03/27/2025] [Accepted: 03/30/2025] [Indexed: 04/16/2025]
Abstract
BACKGROUND Illness uncertainty-a state of struggling to make sense of illness-related events-contributes to distress among parents of children with cancer. While some illness uncertainty is inescapable, uncertainty may be minimized through interventions targeting modifiable antecedents. Within the context of childhood cancer, parent and child characteristics associated with high illness uncertainty have not been identified. We sought to describe illness uncertainty among parents of children with cancer and explore potential associations with parent/child characteristics to identify populations that might benefit most from interventions to mitigate illness uncertainty. PROCEDURE We conducted an exploratory cross-sectional analysis of parent-reported survey data. We recruited parents of children with cancer cared for at a single academic pediatric cancer program in the northeastern United States who participated in two prospective studies (n = 89 parents) between September 2016 and June 2018. Illness uncertainty was measured by the 31-item Parent Perception of Uncertainty Scale (PPUS). RESULTS PPUS score distribution was slightly right-skewed. Median PPUS score was 74, with an interquartile range of 67-83. Twenty-four percent of parents strongly endorsed uncertainty regarding future planning, what their child can and cannot do, and their child's illness trajectory. Twenty percent strongly endorsed uncertainty from unanswered questions. Only 3% of parents reported their child's treatment regimen was too complex to understand. No significant associations were found between PPUS and parent/child characteristics. CONCLUSIONS Future studies should examine additional parent and child characteristics to identify whether specific subgroups of parents may benefit most from interventions to reduce and manage illness uncertainty.
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Affiliation(s)
- Ijeoma Julie Eche-Ugwu
- Phyllis F. Cantor Center for Research in Nursing and Patient Care Services, Dana-Farber Cancer Institute, Boston, Massachusetts, USA
- Harvard Medical School, Boston, Massachusetts, USA
| | - Emanuele Mazzola
- Survey and Data Management Core and Biostatistics Program, Dana-Farber Cancer Institute, Boston, Massachusetts, USA
| | - Sarah E Stevens
- Washington University School of Medicine in St. Louis, St. Louis, Missouri, USA
| | - Joanne Wolfe
- Harvard Medical School, Boston, Massachusetts, USA
- Department of Pediatrics, Massachusetts General Hospital, Boston, Massachusetts, USA
- Department of Pediatrics, Brigham and Women's Hospital, Boston, Massachusetts, USA
| | - Angela M Feraco
- Harvard Medical School, Boston, Massachusetts, USA
- Department of Supportive Oncology, Dana-Farber Cancer Institute, Boston, Massachusetts, USA
- Departments of Pediatric Oncology, Dana-Farber Cancer Institute and Division of Pediatric Hematology/Oncology, Boston Children's Hospital, Boston, Massachusetts, USA
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Grant JB, Johnson-Koenke R. Navigating chronic uncertainty: a theory synthesis for nursing communication in life-limiting illness. BMC Nurs 2024; 23:654. [PMID: 39272056 PMCID: PMC11401398 DOI: 10.1186/s12912-024-02328-7] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 07/22/2024] [Accepted: 09/05/2024] [Indexed: 09/15/2024] Open
Abstract
BACKGROUND Despite the proven benefits of early palliative care, patient communication regarding these services remains elusive. Therefore, this paper aims to (a) provide a focused literature review on nurse palliative care communication addressing chronic uncertainty in life-limiting illness (LLI), (b) define the Reconceptualization of Uncertainty in illness Theory and Problematic Integration Theory within a nursing Unitary Caring Science philosophical worldview and, (c) synthesize these theories and literature review into a unique theoretical framework for early palliative care communication in acute care nursing. METHOD Turner's theory synthesis methodology was combined with a PRISMA-style literature review. The literature search was conducted in July 2023 and updated in May 2024 using EBSCOhost, Pubmed, and PsychINFO databases. A second literature search was undertaken to identify applicable uncertainty theories in chronic or LLIs. RESULTS This theory synthesis highlights the interconnectedness of all facets of uncertainty for those living with severe LLI (personal factors, types of uncertainty, and the nursing communicatory process) and conceptualizes uncertainty communication as a series of events happening simultaneously, not simply a cause-and-effect process. DISCUSSION The framework resulting from this synthesis encourages nurses' holistic understanding of the complex nature of uncertainty in LLI, highlights the integral communicatory role nurses have in their patients' health and wellness, and promotes further nursing-specific communication research. Future research on enabling nurse-initiated early palliative care communication and narrative communication techniques will support patients' values and dignity throughout more than a single hospital stay but their entire disease trajectory.
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Affiliation(s)
- Julie B Grant
- College of Nursing, University of Colorado Anschutz Medical Campus, Aurora, 80045, USA.
| | - Rachel Johnson-Koenke
- College of Nursing, University of Colorado Anschutz Medical Campus, Aurora, 80045, USA
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Nurhidayah I, Nurhaeni N, Allenidekania A, Gayatri D, Rustina Y. Uncertainty of parents due to having children with cancer: A concept analysis. BELITUNG NURSING JOURNAL 2023; 9:218-226. [PMID: 37492752 PMCID: PMC10363973 DOI: 10.33546/bnj.2612] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 03/05/2023] [Revised: 04/06/2023] [Accepted: 05/19/2023] [Indexed: 07/27/2023] Open
Abstract
Background Parents of newly diagnosed cancer children often experience significant concerns about the implications of the diagnosis. They find themselves in challenging decision-making situations, navigating through uncertain conditions following the disclosure. Uncertainty is a prevailing issue in healthcare, yet its interpretation and application within the context of health and nursing practice exhibit multiple meanings and variations. Objective This study aimed to clarify the concept of parental uncertainty arising from having children with cancer. Methods The concept analysis followed the steps outlined by Walker and Avant. A thorough literature search was conducted using the Embase, CINAHL, and MEDLINE databases to identify articles published between 1980 and 2022. Results The literature search yielded 147 articles from various disciplines, including health, nursing, medicine, psycho-oncology, and management. After analysis, 20 articles were selected for inclusion. This study identified four key attributes of parental uncertainty associated with having a child with cancer: (1) emotional disturbance, (2) unpredictability, (3) insufficient information, and (4) problems with decision-making. The antecedents of parental uncertainty encompassed the complexity of the disease, the diagnostic and treatment processes, the hospital environment, communication, and support from credible authorities. The consequences of parental uncertainty included the pursuit of new information, parental adaptability to their role, and parental distress. Conclusion Understanding the four attributes of parental uncertainty, along with their antecedents and consequences, can facilitate the future development and operational translation of the concept of uncertainty in nursing practice. This concept is valuable in the evidence-based provision of nursing care to parents of children with cancer, enabling comprehensive recognition and assessment of parental uncertainty and the implementation of appropriate interventions that are sensitive to parental experiences. Ultimately, this approach promotes the adaptation of both the child and the parent.
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Affiliation(s)
- Ikeu Nurhidayah
- Postgraduate Program, Faculty of Nursing, Universitas Indonesia, Depok, Indonesia
- Pediatric Nursing Department, Faculty of Nursing, Universitas Padjadjaran, Jatinangor, Indonesia
| | - Nani Nurhaeni
- Pediatric Nursing Department, Faculty of Nursing, Universitas Indonesia, Depok, Indonesia
| | | | - Dewi Gayatri
- Basic Science and Fundamental Nursing Department, Faculty of Nursing, Universitas Indonesia, Depok, Indonesia
| | - Yeni Rustina
- Pediatric Nursing Department, Faculty of Nursing, Universitas Indonesia, Depok, Indonesia
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Al-Yateem N, Fakhry R, Saifan AR, Saqan R, Alrimawi I. Assessing sense of coherence as an element of primary-focused health services in schools for children and adolescents with complex health care needs. J Nurs Manag 2021; 30:582-591. [PMID: 34799949 DOI: 10.1111/jonm.13517] [Citation(s) in RCA: 4] [Impact Index Per Article: 1.0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 09/09/2021] [Revised: 11/08/2021] [Accepted: 11/14/2021] [Indexed: 11/29/2022]
Abstract
AIM This study aimed to clarify if sense of coherence (SOC) could be used as an element of primary-focused health services in schools. BACKGROUND The United Arab Emirates (UAE) is striving to develop a high-quality, primary-focused health care system. School health care services are well established in the UAE but have not yet been fully used to play a key role in this development. METHODS This is a cross-sectional survey study to explore adolescents' SOC and their behavioural, psychosocial and clinical outcomes. RESULTS A total of 408 adolescents participated in this study. Compared with others, adolescents with higher SOC had better adherence to treatment, fewer visits to the school nurse, better self-efficacy, fewer hyperactivity problems, fewer emotional problems, more prosocial behaviours and fewer conduct problems. CONCLUSION Implementing interventions that improve SOC may support improved well-being among adolescents. The findings also support the use of SOC and salutogenesis as a framework to reinforce primary health care services for this population. IMPLICATIONS FOR NURSING MANAGEMENT Health service managers can utilize SOC as a framework to focus service on illness prevention and health promotion, they should collaborate with education authorities to include more health-related topics as part of school curricula to promote students' SOC and, finally, they should assess and build awareness of SOC and associated tools among school nurses and primary health care providers.
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Affiliation(s)
- Nabeel Al-Yateem
- Nursing Department, College of Health Sciences, University of Sharjah, Sharjah, United Arab Emirates.,School of Nursing, Midwifery and Indigenous Health, Charles Sturt University, Orange, New South Wales, Australia
| | - Randa Fakhry
- Nursing Department, College of Health Sciences, University of Sharjah, Sharjah, United Arab Emirates
| | | | - Roba Saqan
- Research Institute of Medical and Health Sciences, University of Sharjah, Sharjah, United Arab Emirates
| | - Intima Alrimawi
- School of Nursing and Health Professions, Trinity Washington University, Washington, District of Columbia, USA
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Han ZT, Zhang HM, Wang YM, Zhu SS, Wang DY. Uncertainty in illness and coping styles: Moderating and mediating effects of resilience in stroke patients. World J Clin Cases 2021; 9:8999-9010. [PMID: 34786383 PMCID: PMC8567502 DOI: 10.12998/wjcc.v9.i30.8999] [Citation(s) in RCA: 11] [Impact Index Per Article: 2.8] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 04/12/2021] [Revised: 05/19/2021] [Accepted: 09/02/2021] [Indexed: 02/06/2023] Open
Abstract
BACKGROUND Stroke has a great influence on the patient's mental health, and reasonable psychological adjustment and disease perception can promote the recovery of mental health. AIM To explore the relationships among resilience, coping style, and uncertainty in illness of stroke patients. METHODS A retrospective study was used to investigate 154 stroke patients who were diagnosed and treated at eight medical institutes in Henan province, China from October to December 2019. We used the Mishel Uncertainty in Illness Scale, the Connor-Davidson Resilience Scale, and the Medical Coping Modes Questionnaire to test the uncertainty in illness, resilience, and coping style, respectively. RESULTS Resilience had a significant moderating role in the correlation between coping style and unpredictability and information deficiency for uncertainty in illness (P < 0.05). Further, the tenacity and strength dimensions of resilience mediated the correlation between the confrontation coping style and complexity, respectively (P < 0.05). The strength dimension of resilience mediated the correlation between an avoidance coping style and the unpredictability of uncertainty in illness (P < 0.05), as well as correlated with resignation, complexity, and unpredictability (P < 0.05). CONCLUSION Resilience has moderating and mediating roles in the associations between coping style and uncertainty in illness, indicating that it is vital to improve resilience and consider positive coping styles for stroke patients in the prevention and control of uncertainty in illness.
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Affiliation(s)
- Zi-Ting Han
- School of Nursing, Xinxiang Medical University, Xinxiang 453000, Henan Province, China
| | - Hui-Min Zhang
- School of Nursing, Xinxiang Medical University, Xinxiang 453000, Henan Province, China
| | - Yi-Ming Wang
- School of International Education, Xinxiang Medical University, Xinxiang 453000, Henan Province, China
| | - Shan-Shan Zhu
- School of Nursing, Xinxiang Medical University, Xinxiang 453000, Henan Province, China
| | - Dong-Yang Wang
- Department of Nursing, School of Pharmacy, Changzhou University, Changzhou 213000, Jiangsu Province, China
- Faculty of Nursing, Mahidol University, Nakhon Pathom 73170, Thailand
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Petrongolo JL, Zelikovsky N, Keegan RM, Furth SL, Knight A. Examining Uncertainty in Illness in Parents and Children With Chronic Kidney Disease and Systemic Lupus Erythematosus: A Mediational Model of Internalizing Symptoms and Health-Related Quality of Life. J Clin Psychol Med Settings 2019; 27:31-40. [PMID: 30989366 DOI: 10.1007/s10880-019-09617-3] [Citation(s) in RCA: 6] [Impact Index Per Article: 1.0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/26/2022]
Abstract
To examine if parent illness uncertainty is indirectly associated with child depression, anxiety, and HRQOL in the CKD/SLE population. Parent-child dyads (N = 31) from outpatient rheumatology and nephrology clinics included children (ages 9-18) diagnosed with CKD (Stage 1, 2, or nephrotic syndrome) or SLE. Parents completed demographic and uncertainty measures and children completed uncertainty, depression, anxiety, and HRQOL measures. This cross-sectional study examined mediational models using the percentile bootstrapping method. Parent uncertainty had an indirect effect on child depression, anxiety, and HRQOL through the mediator, child uncertainty. In other words, parents' illness uncertainty regarding their child's condition correlates to the child's illness uncertainty, which then is associated with the child's mental health and wellbeing. Reverse mediations illustrated that parent uncertainty did not mediate child uncertainty and outcome variables. Results extend previous research by examining parent and child illness uncertainty in understudied conditions (CKD/SLE) and the relationship to outcome variables commonly related to depression (e.g., anxiety and HRQOL). Findings allow health psychologists and medical personnel to understand the impact of uncertainty on the child's wellbeing and HRQOL. Clinical implications, including using specialized interventions to address illness uncertainty, are discussed.
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Affiliation(s)
- Jennifer L Petrongolo
- Department of Psychology, La Salle University, 1900 West Olney Avenue, Philadelphia, PA, 19141, USA.
| | - Nataliya Zelikovsky
- Department of Psychology, La Salle University, 1900 West Olney Avenue, Philadelphia, PA, 19141, USA
- Department of Pediatrics, Perelman School of Medicine at the University of Pennsylvania and the Children's Hospital of Philadelphia, 34th Street and Civic Center Blvd, Philadelphia, PA, 19104, USA
| | - Rachel M Keegan
- Department of Psychology, La Salle University, 1900 West Olney Avenue, Philadelphia, PA, 19141, USA
| | - Susan L Furth
- Department of Pediatrics, Perelman School of Medicine at the University of Pennsylvania and the Children's Hospital of Philadelphia, 34th Street and Civic Center Blvd, Philadelphia, PA, 19104, USA
| | - Andrea Knight
- Department of Pediatrics, Perelman School of Medicine at the University of Pennsylvania and the Children's Hospital of Philadelphia, 34th Street and Civic Center Blvd, Philadelphia, PA, 19104, USA
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Al-Yateem N, Brenner M, Alrimawi I, Al-Shujairi A, Al-Yateem S. Predictors of uncertainty in parents of children living with chronic conditions. Nurs Child Young People 2019:e1102. [PMID: 31468904 DOI: 10.7748/ncyp.2019.e1102] [Citation(s) in RCA: 2] [Impact Index Per Article: 0.3] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Accepted: 08/08/2018] [Indexed: 11/09/2022]
Abstract
BACKGROUND Uncertainty in illness implies no meaning has been attributed to an illness event. Although many studies focus on this issue in adults, there is limited research into children with chronic illnesses. Parental uncertainty has been associated with increased risk of post-traumatic stress, which can in turn adversely affect child and parent coping strategies. AIM To identify the characteristics of parents who are at greater risk of uncertainty and the associated characteristics of their children's chronic illnesses. METHOD An exploratory, cross-sectional study design was adopted across three different sites in the United Arab Emirates. Data were collected from parents who accompanied their children, who were receiving treatment, using a validated, culturally adapted Parent Perception of Uncertainty Scale. RESULTS Scores for illness uncertainty ranged from 86.5 to 92.6, on a scale of 31-155, with higher scores indicating greater uncertainty. The highest scores were found in parents of children being cared for in ward settings who had previously been hospitalised, parents of children up to two years of age or those approaching adolescence, fathers, and parents whose first language was Arabic. CONCLUSION The groups of parents with the highest illness uncertainty may benefit most from interventions to improve communication and psychological support.
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Affiliation(s)
- Nabeel Al-Yateem
- Department of Nursing, College of Health Sciences, University of Sharjah, Sharjah, United Arab Emirates, adjunct lecturer and researcher, School of Nursing, Midwifery and Indigenous Health, Faculty of Science, Charles Sturt University and Research Institute for Medical and Health Science, University of Sharjah, United Arab Emirates
| | - Maria Brenner
- School of Nursing and Midwifery, Trinity College Dublin, The University of Dublin, Ireland
| | | | - Arwa Al-Shujairi
- Research Institute of Medical and Health Sciences, University of Sharjah, Sharjah, United Arab Emirates
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