When lightning strikes twice: Perceptions of oncology social workers about working with families with two members in treatment.

OBJECTIVE: Families with a parent and child concurrently receiving cancer treatment are not common, but their needs are typically more complex than families with only one member in treatment. They have a heightened sense of loss, vulnerability, and mortality. The study purpose was to: (1) describe quality of life, social support, resiliency, and loss for these families; and (2) describe how healthcare teams can support these families. METHODS: This was a qualitative study with 20 oncology social workers who had worked with families with a parent and child concurrently receiving treatment for cancer within the past five years. The interview included questions about the emotional, social, financial, and other needs of these families, as well as their social support, quality of life, loss, and resiliency. RESULTS: Three themes emerged from the data: 1. Increased demands on the family with a concurrent cancer treatment, including emotional, financial, and logistical challenges for the ill parent and child and for the healthy parent and siblings; 2. Greater resilience and coping skills were experienced by some families; and 3. Implications for the healthcare team, including emotional distress in treating these families, challenges in treatment adherence, and providing the necessary support to these families. CONCLUSION: Supporting these families is challenging for social workers and other members of the healthcare team. Understanding the emotional, financial and logistical needs of these families, and coordinating their care across the adult and pediatric teams, will better support the patients, as well as the healthcare providers who work with them.

Meeting the Information and Support Needs of Blood Cancer Patients and Caregivers: A Longitudinal Study of a Model of Patient-Centered Information Delivery.

Access to reliable, up-to-date information and resources can assist individuals managing and living with cancer. The Leukemia & Lymphoma Society, through its Information Resource Center, provides personalized information and support to individuals affected by blood cancer. To examine its value and impact, we conducted qualitative interviews (n = 18) and an online survey of patients and caregivers (N = 515) after they talked with an Information Resource Center Information Specialist by phone, with a follow-up survey about 6 months later. Respondents most commonly contacted the Information Resource Center to get referrals to support programs (40.4%) and to obtain information about getting a second opinion (36.5%) and financial assistance (36.2%). After talking with an Information Specialist, respondents felt more hopeful (85.9%), more confident in managing care (82.9%), and more knowledgeable about their diagnosis (49.5%) and financial resources (42.4%). After speaking with an Information Specialist, respondents changed how they advocated for themselves/loved one (23.8%), changed how they communicated with doctors/other providers and family/friends (both 15.9%), received financial assistance (22.2%), and took other actions. Among respondents who took actions, most said that the conversation(s) had positively impacted the action. Respondents who spoke with an Information Specialist more than once were more likely to report positive impacts, including changing how they advocate for themselves/loved one and communicate with providers (both p < 0.05). Respondents diagnosed more recently were also more likely to report positive impact, including changing the way they communicate with providers (p < 0.05). Findings highlight the value of cancer helplines and suggest ways they can be most effective.