Introduction
Parents diagnosed with cancer and their families face unique challenges and greater psychological distress than patients without dependent children (Helseth and Ulfsaet Reference Helseth and Ulfsaet2005; Muriel et al. Reference Muriel, Moore and Baer2012; Semple and McCaughan Reference Semple and McCaughan2013). Although parental cancer is associated with distress among patients, coparents, and children, evidence-based interventions remain limited (Stenberg et al. Reference Stenberg, Ruland and Miaskowski2010; Götze et al. Reference Götze, Ernst and Brähler2015; Moore et al. Reference Moore, Rauch and Baer2015). A few noteworthy interventions include the CONNECTION program, which reduced distress among mothers with curable breast cancer and their children (Lewis et al. Reference Lewis, Brandt and Cochrane2015). To support parents with incurable cancer, Park et al. (Reference Park, Deal and Heiling2022) developed a web-based, tailored psychosocial intervention (FACT) to help parents talk about their cancer with their children. Although this digital intervention was feasible, acceptable, and reduced parents’ worry regarding illness communication, parents’ psychosocial outcomes did not significantly improve. To address this gap, we developed a parent-focused psychosocial intervention informed by a qualitative study (Whisenant et al. Reference Whisenant, Jones and Ann-Yi2023), prior intervention literature, and our clinical program, Ensuring Children Have Optimal Support (ECHOS) (Ann-Yi et al. Reference Ann-Yi, Milbury and Jones2023; Milbury et al. Reference Milbury, Ann-Yi and Whisenant2025).
The purpose of the ECHOS program is to provide psychological interventions to support a family with a parent facing cancer to reduce parenting distress, so their children continue to develop in a healthy family environment. Comprised of clinical mental health care providers with expertise in developmental and child psychology and family systems theory, we provide clinical interventions to support a parent diagnosed with cancer and his/her family through the cancer experience. Therapeutic interventions range from guiding age-appropriate communication of health information to their children, to problem-solving practical parenting challenges while adjusting to cancer and treatment, facilitating healthy family connections, preparing children for death when prognosis is poor and creating legacy projects and supporting anticipatory grief. Interventions are based on literature and research in caring for parents with cancer and their children (Rauch et al. Reference Rauch, Muriel and Cassem2002; Muriel and Rauch Reference Muriel and Rauch2003; Rauch and Muriel Reference Rauch and Muriel2004; Park et al. Reference Park, Jensen and Song2021).
The case of Ms. R. represents ECHOS interventions to prepare this family for end of life and, unfortunately, her death. In addition to her health situation, Ms. R and her husband were also navigating traveling to another state for treatment, having limited local social support, being physically separated from their young children, and maintaining parenting and connection from a distance. This case also demonstrates the additional responsibilities that fall on the healthy coparent and highlights the importance of including a family-centered approach since he will be the primary parent supporting their children’s grief.
Case description
Ms. R was a Hispanic female in her early 40s with metastatic lung cancer. She was an engineer, wife, and a mother to 2 daughters, both less than 12 years old. She presented to the emergency room with dyspnea, worsening left chest pain, and hemoptysis and was admitted for further work-up. Supportive Care was consulted to address pain management and emotional distress. Subsequently, she was referred to the supportive psychology team for the ECHOS program to address anxiety and parenting concerns.
ECHOS counselor met with Ms. R and her husband on day 2 of her admission for an initial psychology consultation. Ms. R. expressed significant anxiety and anticipatory grief related to her incurable cancer diagnosis, particularly concerns about not witnessing her children’s future milestones and the impact of her illness on her young children and husband. Supportive expressive counseling was provided to facilitate emotional processing and anticipatory grief for both patient and spouse. The session focused on the benefits of transparent, age-appropriate communication about her cancer diagnosis with the children, as they had not yet disclosed the diagnosis while awaiting additional diagnostic results. A communication tool, the “3 Cs (cancer, non-contagious, did not cause),” was introduced to Ms. R and her husband as a guide for providing their children with information about her cancer diagnosis (University of California n.d.). In addition, resources including age-appropriate children’s books such as What Happens When Someone I Love Has Cancer? (Olsher Reference Olsher2020) and literature on communicating cancer diagnosis to children were provided to support and reinforce communication and education regarding cancer. ECHOS counselor also provided assessment of family needs and problem-solving around caregiving logistics, given that the family was from out of state and the children were being cared for by maternal grandparents.
During subsequent encounters, the ECHOS counselor continued supporting the family’s emotional processing of their distress and preparing Ms. R and her husband to discuss Ms. R’s cancer diagnosis with their children. This included anticipating their child’s reactions and questions, and developing and rehearsing supportive responses for both Ms. R and her husband, as well as her parents who were caring for their children. Together with the ECHOS counselor, they developed a plan for Mr. R to travel home to be present with their children, with Ms. R participating on the telephone to share her diagnosis with their daughters. They reported that diagnosis disclosure had been successful by using the 3 Cs framework and utilizing the provided children’s book. Over a 21-day admission, Ms. R completed 6 sessions with the ECHOS counselor focusing on emotional support, facilitating family communication regarding health situations, and coping with parenting concerns. Before discharge, Ms. R and her husband expressed an improvement in anxiety and some relief that she was able to communicate with their daughters about her cancer.
Unfortunately, approximately 1 month after hospital discharge, disease progression and frequent hospitalizations led Ms. R to decide to transition to hospice care. During an outpatient telehealth session with the ECHOS counselor, the patient and her husband discussed plans of relocating to the patient’s parents’ home to increase support for their daughters as she transitions to end of life. Guidance was provided regarding communicating the transition to hospice and preparing their children for Ms. R’s death, which included age-appropriate psychoeducation about children’s understanding of death and the grief process. Anticipatory grief therapy was also provided to help Ms. R and her husband process this decision and support their children through the transition.
Four days after the telehealth session and before they had an opportunity to execute this plan, Ms. R unfortunately presented to the emergency room with confusion and aphasia. She was found to have left Middle Cerebral Artery syndrome and underwent mechanical thrombectomy. The patient was intubated and admitted to the Intensive Care Unit (ICU). Due to no clinical improvement, Ms. R’s husband decided to urgently have their children come to see their mother in the ICU. The ECHOS counselor was able to meet the daughters and provide direct family therapy to support their processing and understanding of their mother’s health situation and imminent death and prepare for the visit. The ECHOS counselor was able to provide an opportunity for their daughters to express their anticipatory grief and address any concerns they expressed about their future without their mother. In addition, as a therapeutic exercise to support understanding and the grief process, Ms. R.’s daughters participated in creating a legacy locket of their mother’s fingerprint on one side and their own fingerprint on the other. While participating in this legacy project, the daughters shared memorable and loving stories of their mother.
The following day, Ms. R. was extubated and died peacefully with her husband, brother, and parents at bedside. A follow-up call was made to the husband the next day, during which he shared that their daughters were coping and grieving appropriately. He also expressed gratitude for the ongoing support provided to them by the ECHOS counselor.
Discussion
Due to earlier cancer detection, improved survival, and trends toward later parenthood, the number of parents with cancer who are raising minor children is increasing (18). These parents often experience substantial distress related to parenting, including communicating a diagnosis and prognosis to their children, providing emotional support, preparing children for end of life, and creating a legacy. Routine screening, assessment, and targeted interventions are needed to address the unique challenges faced by these families. Family-centered psychosocial care should be integrated with medical treatment throughout the disease trajectory, particularly near the end of life, to help parents prepare their children for a parent’s death and support healthy coping and bereavement. Interventions should also include partners or coparents, who are likely to assume primary caregiving responsibilities and support their children’s adjustment after a parent’s death, as well as other family members who may play an ongoing supportive role.
Key takeaways
• As the number of cancer patients with minor children increases, parents with cancer should be routinely screened for parenting-related distress.
• Family-centered psychosocial interventions should be integrated into cancer care and address the needs of patients, partners/coparents, and children.
• Parents need guidance on discussing a cancer diagnosis and prognosis with their children and, when relevant, preparing them for a parent’s death.
Conclusion
Cancer patients and their partners raising children experience distress related to illness communication, parenting concerns, and the impact of cancer on their children (Whisenant et al. Reference Whisenant, Jones and Ann-Yi2023). To address these challenges, we developed the ECHOS program, which provides psychosocial support and parenting interventions for families coping with parental cancer. Further research is needed to improve screening and assessment of parenting-related distress and to establish the effectiveness of interventions that address the unique needs of parents with cancer.
Author contributions
S.-Y. and V.P. equally contributed to this work and should be considered co-first authors.
Competing interests
All authors declare no conflict of interest.
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