Op Koers Online Program: Assistance For Parents Of Pediatric Cancer Patients

This research addresses the challenges faced by parents of children with cancer, emphasizing the stress and uncertainty associated with treatments and long-term effects. The study, anchored in the disability-stress-coping model, highlights the crucial role of coping skills in mediating well-being. It proposes cognitive behavioral therapy (C.B.T.) and acceptance and commitment therapy (A.C.T.), focusing on cognitive coping strategies. The Op Koers Online program, a Dutch group course combining face-to-face and online modules, is introduced as a potential solution. The study aims to assess Op Koers Online’s effectiveness in improving parents’ psychosocial well-being and coping skills, filling a research gap in the Netherlands regarding online interventions for this specific group.

 

THE BACKGROUND OF THE STUDY

Childhood cancer diagnoses, affecting approximately 600 children annually in the Netherlands and 400,000 globally, present a profound journey for parents, characterized by the challenges of treatments, hospitalizations, and potential long-term health impacts [1]. This stress often manifests in post-traumatic stress symptoms (P.T.S.S.), emphasizing the crucial need for interventions to support parents’ well-being during and after treatment [2, 7, 8].

Psychosocial challenges faced by parents are intricately linked with the management of their child’s illness, influencing the child’s quality of life outcomes [9, 10]. The disability-stress-coping model, adapted for OpKoer studies, underscores the role of coping skills as mediators between stressors and overall well-being [14]. Cognitive coping strategies, such as appraising stressful situations as challenges, are identified as crucial for parents to foster feelings of mastery and control [15]. Interventions based on cognitive behavioral therapy (C.B.T.) and acceptance and commitment therapy (A.C.T.) are proposed as tools to help parents cope with disease-related stressors [15].

Incorporating joint problem-solving elements and group interventions reduces distress and enhances resilience [18-20]. Online interventions, like Op Koers Online, a Dutch group course program for parents of children with cancer, offer practical advantages, including reduced barriers related to distance and increased participant anonymity [21, 22]. 

The study aims to investigate the effects of Op Koers Online on parents’ psychosocial well-being and coping skills, addressing a research gap in the Netherlands [1]. While international research on online courses for parents of children with cancer exists, this study contributes to the existing knowledge by evaluating such interventions within the Dutch context. 

 

THE STUDY METHOD

The research employed a randomized controlled trial (R.C.T.) design to assess the efficacy of Op Koers Online for parents of children with cancer. The study featured an intervention condition and a wait list-control condition, with online questionnaires administered at baseline (T0), 6 weeks (T1), and 6 months (T2) after the start of the intervention. In the intervention condition, a follow-up assessment was conducted at 12 months (T3) in t. Parents in the intervention condition completed an evaluation questionnaire at T1. The Ethics Board of the University’s Medical Centre in Utrecht approved the study protocol (ref 20/289).

The inclusion period for the study spanned from September 2020 to January 2022, with parents recruited through various channels, including hospital newsletters, social media, outpatient clinic leaflets, and mail. To be eligible, parents needed to have a child diagnosed with cancer aged 0–18 years, within 5 years from diagnosis, and still living with their parent(s). Randomization was done with a 1:1 ratio, stratified based on the treatment phase, ensuring a similar distribution of treatment phases in both conditions.

The Op Koers Online intervention aimed to teach active coping skills over 6 weekly 90-minute online chat sessions, followed by a booster session 5 months later. The content covered various themes, including C.B.T. principles, the hospital, family dynamics, self-care, and the environment/society. Trained course leaders facilitated the sessions, logging participants into a secured chat room. Measures included background and illness characteristics, psychosocial well-being (anxiety, depression, distress, emotional reactions), coping skills, and an evaluation of the intervention through a self-developed questionnaire.

Data collection utilized online questionnaires and adaptive testing methods for psychosocial well-being measures. The study implemented a rigorous randomization process and detailed intervention protocols, ensuring a comprehensive evaluation of Op Koers Online’s impact on parents’ psychosocial well-being and coping skills.

 

ANALYSIS

The study conducted a randomized controlled trial (R.C.T.) with 94 participants (47 in each condition) to evaluate the efficacy of Op Koers Online for parents of children with cancer, utilizing the S.P.S.S. Version 26 for statistical analyses. Power calculations informed the sample size needed to detect meaningful differences over time. Baseline differences were examined using t-tests and χ²-tests, and psychosocial well-being at baseline was compared with Dutch norms. Linear mixed model analyses, corrected for age and sex, were employed to assess the intervention’s impact on anxiety, depression, distress, disease-specific emotional reactions, and coping skills. Descriptive statistics were used to analyze an evaluation questionnaire. Additionally, specific models were fitted for the intervention condition to assess long-term changes.

The analyses considered data dependency within participants, with inclusion criteria requiring data availability for T0, T1, and/or T2 and attendance at a minimum of four out of six sessions. Missing data were not imputed. The study used a statistical significance level of 0.05 to test effects, ensuring a comprehensive evaluation of Op Koers Online’s impact on parents’ psychosocial well-being and coping skills over time.

 

RESULTS

1. Participant Flow:

   – Enrolled participants: 100

   – Participants included in analyses: 89 (43 in intervention, 46 in wait list-control)

   – Recruitment period: Ended when desired participant count reached.

   – Trial end: May 2023, with the last parent completing their final measurement.

2. Baseline Characteristics:

   – No substantial differences were found between baseline intervention and wait list-control conditions.

   – Participants in both conditions had higher levels of anxiety, depression, and distress than Dutch norms at baseline.

3. Psychosocial Well-being:

   – Beneficial effects of the intervention observed on anxiety, depression, distress, and feelings of loneliness at T1.

   – Continued positive effects on anxiety and feelings of uncertainty at T2.

   – Well-being in the intervention condition remained stable from T2 to T3, except for decreased feelings of loneliness.

4. Coping Skills:

   – Intervention showed beneficial effects on coping skill relaxation at T1 and T2.

   – No significant effects were found for open communication, positive thinking, and predictive control.

   – Relaxation further improved from T2 to T3 in the intervention condition.

5. Evaluation:

   – Participants rated the intervention with an average score of 7.6 out of 10.

   – High recommendation rates (87.8%) and a substantial portion (73.2%) reported learning something new.

   – Logistic aspects of the sessions were well-received, with over 82.9% rating them as good/right.

   – Reading material and homework assignments were considered helpful by all parents.

   – Positive perceptions of understanding were reported regarding both course leaders (90.2%) and fellow participants (92.7%).

   – Preferences leaned towards video conferencing (47.1%), while 24.4% appreciated the opportunity to participate anonymously.

The study demonstrates the positive impact of Op Koers Online on psychosocial well-being and coping skills for parents of children with cancer, as evidenced by improved mental health outcomes and participant satisfaction.

 

DISCUSSION

This randomized controlled trial (R.C.T.) marks a pioneering effort in the Netherlands, focusing on the effectiveness of an online group intervention designed for parents of children with cancer [1]. Encouragingly, the intervention demonstrated favorable outcomes, notably enhancing psychosocial well-being and cultivating relaxation as a coping mechanism [1]. Parental appraisals of the intervention were overwhelmingly positive, highlighting its potential impact.

In terms of temporal effects, the short-term evaluation at 6 weeks showed promising reductions in anxiety, depression, distress, and feelings of loneliness and notable improvements in coping skills, particularly in the realm of relaxation. Significantly, these positive effects persisted over the long term, with sustained benefits observed after 6 months, indicating a lasting positive influence on anxiety, feelings of uncertainty, and the ability to employ relaxation as a coping strategy [1].

Comparisons with similar interventions underscored both similarities and distinctions. While reductions in anxiety and depression aligned with previous findings in Op Koers Online for chronic illnesses, this study emphasized relaxation as a coping skill, setting it apart from interventions targeting parents of children with cancer. The unique challenges associated with cancer, including its severity and life-threatening nature, may influence the relevance of specific coping strategies [1].

Crucially, the study revealed the maintenance of intervention effects after a year. Well-being and coping levels in the intervention condition remained stable or slightly improved compared to the 6-month follow-up, suggesting the potential for enduring positive impacts [1]. Participant satisfaction emerged as a significant aspect, with a majority expressing contentment and indicating they had acquired new insights. Preferences for online chat sessions were evident, but the consideration of videoconferencing suggests potential adaptations for future interventions to cater to varying preferences [1].

Recruitment success was attributed to the centralized pediatric oncology care in the Netherlands, ensuring broad access to families. However, challenges in forming homogeneous groups were acknowledged, as some parents preferred more relatable situations within their groups [1]. 

Notably, the study coincided with the COVID-19 pandemic, potentially influencing the increased acceptance of online activities. Exploring videoconferencing formats and incorporating structured monitoring of homework completion could enhance intervention effectiveness. Overall, the study provides incredible insights into the efficacy and preferences of online group interventions for parents of children with cancer, highlighting positive impacts on psychosocial well-being and coping skills [1].

 

LIMITATIONS OF THE STUDY

1. Open Recruitment Strategy: The study’s reliance on an open recruitment strategy poses a limitation as it hinders information acquisition about non-respondents, thereby limiting insights into potential selection biases.
2. Incomplete 12-Month Follow-up Data: The absence of 12-month follow-up data for the control group represents a limitation, preventing comprehensive assessments of long-term intervention effects. This is a consequence of the ethical decision to offer the intervention to the control group after 6 months.
3. Overrepresentation of Highly Educated Mothers: A notable limitation is the over-representation of highly educated mothers among the participants, raising concerns about the generalizability of the study findings to a broader demographic.
4. Lack of Specific Information on Psychosocial Support Utilization: The study needs more specific information on participants’ utilization of psychosocial support, potentially confounding the interpretation of intervention effects. Understanding the role of other support mechanisms could provide a more nuanced perspective.
5. Ethical Considerations: While the decision to offer the intervention to the control group is ethically sound, it introduces challenges in assessing long-term effects and necessitates careful interpretation of the results.
6. Generalization: The study’s specific focus on parents of children with cancer in the Netherlands may limit the generalization of findings to a more diverse population or other cultural contexts.
7. Educational Bias: The preponderance of highly educated mothers in the study population may introduce biases in understanding the intervention’s effects, potentially affecting the applicability of findings to a broader socio-economic spectrum.
8. Incomplete Information on Non-respondents: Lack of detailed information on non-respondents due to the study’s recruitment strategy may lead to gaps in comprehensively understanding the characteristics of those who did not participate.
9. Homogeneity of Intervention Groups: The formation of heterogeneous intervention groups, while practical, may result in varied participant experiences, limiting the ability to draw uniform conclusions about the intervention’s impact.
10. Intervention Effect on Specific Coping Skills: The study focuses on the impact of the intervention on coping skills, with a more specific emphasis on relaxation. This narrow scope may limit the broader applicability of the findings to a comprehensive set of coping mechanisms.

Acknowledging and addressing these limitations in future research is crucial to refining the study design and enhancing the robustness of findings.

 

CONCLUSION

Participating in Op Koers Online for parents of children with cancer yields positive effects on psychosocial well-being and the coping skill of relaxation, both immediately post-intervention and after six months, aligning with similar positive outcomes observed in other Op Koers Program modules. These encouraging findings support the integration of Op Koers Online into routine care provided by the Princess Máxima Center’s psycho-oncology department. This transition from research to practice highlights the intervention’s potential as a valuable component in regular care for parents facing the challenges of pediatric cancer, emphasizing its positive contribution to the broader field of psycho-oncological support for affected families.

 

References

1. Steliarova-Foucher E, Colombet M, Ries LAG, et al. International incidence of childhood cancer, 2001–10: a population-based registry study. Lancet Oncol. 2017;18(6):719-731.   [https://doi.org/10.1016/s1470-2045(17)30186-9] 
2. Kazak A.E., Boeving CA, Alderfer MA, Hwang WT, Reilly A. Post-traumatic stress symptoms during treatment in parents of children with cancer. J Clin Oncol. 2005;23(30):7405-7410. [ https://doi.org/10.1200/jco.2005.09.1103] 
3. Ljungman L, Hovén E, Ljungman G, Cernvall M, von Essen L. Does time heal all wounds? A longitudinal study of the development of post-traumatic stress symptoms in parents of survivors of childhood cancer and bereaved parents. Psycho Oncol. 2015;24(12):1792-1798. [https://doi.org/10.1002/pon.38568]
4. McKenzie SE, Curle C. ‘The end of treatment is not the end’: parents’ experiences of their child’s transition from treatment for childhood cancer. Psycho Oncol. 2012;21(6):647-654.  [https://doi.org/10.1002/pon.19539]
5. Cousino MK, Hazen RA. Parenting stress among caregivers of children with chronic illness: a systematic review. J Pediatr Psychol. 2013;38(8):809-828.  [https://doi.org/10.1093/jpepsy/jst049]
6. Bakula DM, Sharkey CM, Perez MN, et al. The relationship between parent distress and child quality of life in pediatric cancer: a meta-analysis. J Pediatr Nurs. 2020;50:14-19. [https://doi.org/10.1016/j.pedn.2019.09.024]
7. Douma M, Maurice-Stam H, Gorter B, et al. Online psychosocial group intervention for parents: positive effects on anxiety and depression. J Pediatr Psychol. 2021;46(2):123-134. [https://doi.org/10.1093/jpepsy/jsaa102]
8. Ogez D, Péloquin K, Bertout L, et al. Psychosocial intervention programs for parents of children with cancer: a systematic review and critical comparison of programs’ models and development. J Clin Psychol Med Settings. 2019;26(4):550-574. [https://doi.org/10.1007/s10880-019-09612-8]
9. Ramchand R, Ahluwalia SC, Xenakis L, Apaydin E, Raaen L, Grimm G. A systematic review of peer-supported health promotion and disease prevention interventions. Prev Med. 2017;101:156-170. [https://doi.org/10.1016/j.ypmed.2017.06.008]
10. Tully C, Schneider C, Monaghan M, Hilliard ME, Streisand R. Peer coaching interventions for parents of children with type 1 diabetes. Curr Diabetes Rep. 2017;17(6):1-10. [https://doi.org/10.1007/s11892-017-0870-7]
11. Luo Y-h, Xia W, He X, Zhang J, Li H.C.W. Psychological interventions for enhancing resilience in parents of children with cancer: a systematic review and meta-analysis. Support Care Cancer. 2021;29(11):7101-7110. [https://doi.org/10.1007/s00520-021-06344-0]
12. Niela-Vilén H, Axelin A, Salanterä S, Melender HL. Internet-based peer support for parents: a systematic integrative review. Int J Nurs Stud. 2014;51(11):1524-1537. [https://doi.org/10.1016/j.ijnurstu.2014.06.009 ]
13. Preuhs K, Velderman MK, van Empelen P. Possibilities and challenges of delivering health-related small group interventions online: a scoping review. Interact J Med Res. 2023;12(1):e43783. [https://doi.org/10.2196/43783]
14. Joosten MMH, Maurice-Stam H, van Gorp M, et al. Efficacy of OpKoersOnline, an online group intervention for parents of children with cancer: results of a randomized controlled trial. Psychooncology. 2024;e6284. [https://doi.org/10.1002/pon.6284]

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  • Inoperable Locally Advanced Non-Small Cell Lung Cancer: Survival Rates of Endostar, CCRT
  • Physician Practice Management and Private Equity
  • Physician Spending And Its Association With Patient Outcomes
  • Physician Burnout: Causes and Prevention
  • LEAP-MS: Adaptations for Advanced Stages
  • MS: Exercise Impacts on MRI
  • The Role of Preretirement Job Complexity in Cognitive Performance
  • Extrapontine Myelinolysis and PTA in Pregnancy
  • Verbal Communication and Masks
  • Sugammadex Versus Neostigmine in Thyroidectomy
  • SGLT Inhibitors on Weight and Lipid Metabolism in Diabetes
  • Saxagliptin: Obese Patients with Impaired Glucose Tolerance
  • Levothyroxine Therapy and Depression
  • Grave’s Disease and Risk of Systemic Lupus Erythematosus
  • Benign Thyroid Removal and Patient Satisfaction
  • MF- Biology, Management, and a Case Study of Ocular Manifestation
  • Quality Of Life In Adolescent Cancer Survivors
  • Cancer Opioid Risk Score
  • Oncology-Specific Opioid Risk Calculator In Cancer Survivors
  • 3D MRI for Non-invasive Ocular Proton Therapy of Uveal Melanomas
  • Sexual Dysfunction in Prostate Cancer Patients 
  • 3-Day Surprise Question To Predict Survival Rates in Advanced Cancer Patients

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