Olsavsky Anna L, Sutherland-Foggio Malcolm, Stanek Charis J, Hill Kylie N, Himelhoch Alexandra C, Kenney Ansley E, Humphrey Lisa, Olshefski Randal, Skeens Micah A, Nahata Leena, Gerhardt Cynthia A
The Center for Biobehavioral Health at the Abigail Wexner Research Institute at Nationwide Children's Hospital, Columbus, OH, USA.
Department of Clinical and Health Psychology, University of Florida, Columbus, FL, USA.
Palliat Support Care. 2024 Oct 4:1-9. doi: 10.1017/S1478951524001196.
To characterize caregiver experiences in the context of advanced pediatric cancer by identifying individual (i.e., demographic factors, stress) and family context factors (i.e., family roles, social support) associated with caregiver strain.
Families of children (ages 5-25) with advanced cancer (i.e., physician-estimated prognosis < 60%, relapsed/refractory disease) were recruited from a large children's hospital. Mothers ( = 55; 87% White) and fathers ( = 30; 83% White) reported on their caregiver strain, cancer-specific stress, general stress, social support, division of 7 family roles (e.g., medical care of ill child, household chores), and their satisfaction with each role.
Parents reported moderate caregiver strain, cancer-specific stress, and general stress, and high social support and satisfaction with family roles. Fathers reported family roles were shared equally, whereas mothers reported either sharing roles or completing them independently. When accounting for income and partnership status, greater caregiver strain for mothers was associated with greater general stress, greater satisfaction with family roles, and lower social support. For fathers, greater caregiver strain was associated only with greater cancer-specific stress.
In the context of advanced pediatric cancer, fathers may experience caregiver strain as cancer-specific stress increases, whereas mothers' strain may depend on broader family and social factors. Psychosocial providers should address general and cancer-specific stress within families, and provide resources for enhancing mothers' social support. Additional research is needed with larger, more diverse samples to inform future intervention approaches.
通过识别与照料者压力相关的个体因素（即人口统计学因素、压力）和家庭背景因素（即家庭角色、社会支持），来描述晚期儿科癌症背景下照料者的经历。
从一家大型儿童医院招募患有晚期癌症（即医生估计预后小于60%，复发/难治性疾病）的儿童（5 - 25岁）的家庭。母亲（n = 55；87%为白人）和父亲（n = 30；83%为白人）报告了他们的照料者压力、癌症特异性压力、一般压力、社会支持、7种家庭角色的分工（例如，患病儿童的医疗护理、家务）以及他们对每个角色的满意度。
父母报告了中度的照料者压力、癌症特异性压力和一般压力，以及较高的社会支持和对家庭角色的满意度。父亲报告家庭角色平等分担，而母亲报告要么分担角色要么独立完成。在考虑收入和伴侣状况时，母亲更大的照料者压力与更大的一般压力、对家庭角色更高的满意度以及更低的社会支持相关。对于父亲来说，更大的照料者压力仅与更大的癌症特异性压力相关。
在晚期儿科癌症背景下，随着癌症特异性压力增加，父亲可能会经历照料者压力，而母亲的压力可能取决于更广泛的家庭和社会因素。心理社会服务提供者应关注家庭中的一般压力和癌症特异性压力，并提供增强母亲社会支持的资源。需要用更大、更多样化的样本进行进一步研究，以为未来的干预方法提供信息。
