Exploring the gender dimension of problems and needs of patients receiving specialist palliative care in a German palliative care unit - the perspectives of patients and healthcare professionals

Abstract

Background Gender disparities of specific symptoms and problems have frequently been observed in palliative care patients, but research rarely focused on the range of problems and needs affected by gender. Methods We conducted semi-structured interviews with patients and healthcare professionals (HCPs) of a hospital-based palliative care unit to examine gender effects on patients’ problems and needs based on systematically gathered qualitative data. Content analysis was used to identify emerging themes with data coded using MAXQDA. Results Ten patients (5 female, 5 male) and 17 HCPs (12 female, 5 male) were interviewed. Seven categories of gender-specific problems and needs emerged: “physical symptoms, care and body image”, “psychological symptoms and emotional response”, “interaction with the palliative care team”, “use of professional supportive measures”, “activation of informal social networks”, “decision-making”, and “preservation of autonomy and identity”. Both patients and HCPs felt that female patients adopt more expressive coping strategies, have stronger need for communication with and support of HCPs, and activate an extended social network for support and decision-making. Further, both groups thought that male patients mainly rely on social support from partners, have higher expectations to be cared for at home, and have higher need for preservation of autonomy. Conclusion Gender relevantly impacts patients’ problems and needs during palliative care. Therefore, gender-sensitive palliative care that acknowledges the patient’s individual situation and respective ramifications are required.

Sex-specific and gender-specific aspects in patient-reported outcomes

“…30 31 Interestingly, altered body image perception in patients with primary brain tumour did not differ by sex, 32 whereas in a non-brain tumour study, changes of body image were seen to have a larger emotional impact on female patients compared with male patients. 33 Overall, most PROs published in cancer did not stratify for sex, despite its well-known role as genetic and hormonal disease modifier, contributing to an imbalance in these assessments. Subgroup analyses for sex however confirm a differential outcome in symptom perception and ultimately outcome and treatment.…”

Gender and Observed Complexity in Palliative Home Care: A Prospective Multicentre Study Using the HexCom Model

“…In addition, this could be related to different approaches to end of life. Most women have lost their partners (only 8.4% have their partner as primary caregiver versus 45.9% of men), and might have accepted that death is the next step in their biography, adopting coping strategies focused on problem solving and help seeking, whereas men draw more on avoidance and disengagement [ 28 ]. Similarly, while women actively participate in doctor–patient communication, men acquire a passive role and often refuse to talk about problems related to death [ 29 ].…”

“…Gender biases and inequalities exist at multiple levels of health research and practice, affecting each other’s significance [ 9 , 43 ]. For instance, our analysis has not considered the gender of the primary caregiver, even though we know that three out of four informal caregivers are women [ 28 ]. Moreover, we cannot rule out a potential gender bias in the observers, since 90.8% (196/216) of the researchers were women, and women might normalise and minimise the needs of older women.…”

A cross-sectional gender-sensitive analysis of depressive symptoms in patients with advanced cancer

“…Attention to gender, and disaggregating data based on gender, is essential to high-quality and generalizable health research evidence that can inform clinical practice. [8][9][10]55 There are a number of limitations of this research. Participants were recruited for a psychotherapy trial, and this study sample may therefore not be representative of all patients with advanced cancer.…”

“…25 Ullrich and colleagues assert that "systematic data on how gender impacts problems and needs of terminally ill patients in need of palliative care are rare and recommendations for gender-sensitive palliative care are lacking". 8 There is no consensus regarding the relationship between gender and depression in advanced cancer, and in the available literature, gender is rarely the primary variable of interest. Instead, most research often considered gender as a covariate and therefore most studies did not disaggregate the data by gender in their analyses, which is problematic given that disaggregated data can unmask What this paper adds?…”