Background
Methods
Study design
Participants and sampling
Data collection
Interviews
Characteristics and gender-role identity
Data analysis
Results
Characteristics of patients and healthcare professionals
Patients (N = 10) | n | % |
Sex | ||
Male | 5 | 50 |
Female | 5 | 50 |
Age, mean (range) | 61.3 | (40–78) |
Cancer site | ||
Gastrointestinal | 4 | 40 |
Pancreatic | 2 | 20 |
Lung | 1 | 10 |
Prostatic | 1 | 10 |
Mamma | 1 | 10 |
Malignant melanoma | 1 | 10 |
Time since first diagnosis in months, mean (range) | 34.5 | (3–78) |
Length of stay at time of interview in days, mean (range) | 9.7 | (2–23) |
HCPs (N = 17) | n | % |
Sex | ||
Male | 5 | 29 |
Female | 12 | 71 |
Age | ||
≤ 40 years | 6 | 35 |
41–50 years | 7 | 41 |
> 50 years | 4 | 24 |
Profession | ||
Physician | 4 | 24 |
Nurse | 7 | 41 |
Psychosocial profession | 4 | 24 |
Pastoral worker | 2 | 12 |
Work experience in specialist palliative care | ||
1–5 years | 9 | 53 |
6–10 years | 6 | 35 |
> 10 years | 2 | 12 |
Work experience in specific profession | ||
1–5 years | 2 | 12 |
6–10 years | 1 | 6 |
> 10 years | 14 | 82 |
Patients (N = 10) | HCPs (N = 17) | |||
---|---|---|---|---|
M (SD) | Range | M (SD) | Range | |
Whole sample | ||||
Masculinity scale | 28.8 (3.5) | 25–34 | 27.3 (3.4) | 21–33 |
Femininity scale | 31.2 (3.0) | 27–37 | 33.2 (3.2) | 28–39 |
Male subsample | ||||
Masculinity scale | 29.0 (3.3) | 25–34 | 28.8 (4.0) | 24–33 |
Femininity scale | 31.2 (2.3) | 28–35 | 33.6 (2.9) | 31–38 |
Female subsample | ||||
Masculinity scale | 28.5 (4.2) | 24–33 | 26.7 (3.1) | 21–30 |
Femininity scale | 31.3 (4.3) | 27–37 | 33.0 (3.5) | 28–39 |
Categories developed: gender-specific problems and needs
Category | Subcategories | Gender-specificitya | |||||
---|---|---|---|---|---|---|---|
Patients (N = 10) | HCPs (N = 17) | ||||||
N | Yes (n) | No (n) | N | Yes (n) | No (n) | ||
1. Physical symptoms, care and body image | 1.1 Physical symptoms | 8 | 5 | 3 | 11 | 4 | 7 |
1.2 Coping with physical symptoms | 2 | 2 | 0 | 14 | 14 | 0 | |
1.3 Body image and appearance | 2 | 2 | 0 | 5 | 4 | 1 | |
1.4 Preference for gender-sensitive physical nursing | 10 | 7 | 3 | 10 | 8 | 2 | |
2. Psychological symptoms and emotional response | 2.1 Psychological symptoms | 6 | 4 | 2 | 10 | 5 | 5 |
2.2 Coping with psychological symptoms | 7 | 7 | 0 | 13 | 10 | 3 | |
3. Interaction with the palliative care team | 3.1 Need for communication with the team | 9 | 8 | 1 | 18 | 16 | 2 |
3.2 Occasions and themes of conversation | 2 | 0 | 2 | 5 | 4 | 1 | |
3.3 Choice of contact persons and confidents | 4 | 3 | 1 | 12 | 8 | 4 | |
3.4 Appreciation of authority and professional expertise | 1 | 1 | 0 | 8 | 7 | 1 | |
3.5 Trust and cooperation | 7 | 3 | 4 | 9 | 5 | 4 | |
4. Use of professional supportive measures | 4.1 Active demand for support | 3 | 2 | 1 | 7 | 7 | 0 |
4.2 Actual utilisation of support | 7 | 5 | 2 | 21 | 20 | 1 | |
5. Activation of informal social networks | 5.1 Delegation of responsibilities and tasks | 8 | 3 | 5 | 18 | 16 | 2 |
5.2 Maintaining social relationships | 4 | 3 | 1 | 9 | 6 | 3 | |
5.3 Care for the dying | 4 | 2 | 2 | 6 | 3 | 3 | |
6. Decision-making | 6.1 Course of decision-making | 6 | 5 | 1 | 1 | 1 | 0 |
6.2 Involvement of significant others | 1 | 1 | 0 | 7 | 5 | 2 | |
6.3 Decisional basis for or against home-based care | 4 | 4 | 0 | 10 | 9 | 1 | |
6.4 Kind of further care | 6 | 4 | 2 | 13 | 8 | 5 | |
6.5 End-of-life treatment and wishes | 4 | 1 | 3 | 9 | 1 | 8 | |
7. Preservation of autonomy and identity | 7.1 Need for preserving autonomy and control | 10 | 9 | 1 | 14 | 10 | 4 |
7.2 Need for maintaining one’s identity | 10 | 9 | 1 | 10 | 10 | 0 |
Category 1: Physical symptoms, care and body image
“I think men call later than women when suffering from symptoms like nausea. They seem to feel that they have to endure symptoms as long as possible.” (H07, 44)
“I think men pay less attention to it. […]. Women are more attentive to their ideal: what do I look like, I have to – want to – care for myself, then I feel better.” (H04, 38)
Category 2: Psychological symptoms and emotional response
“It is a whole palette I see. But I could not say they are gendered. Grief – I’ve seen men crying and women saying ‘we’ll make it’.” (H12, 6)
“I think they [women] are more likely to admit it, ‘I have a depression right now.’ I think it is easier for women to acknowledge depressive feelings.” (P08, 40)
Category 3: Interaction with the palliative care team
“Do I communicate about it or not?’ I believe women communicate more openly.” (P08, 41)
“In my view, male communication […] often starts with a clear need.” (H17, 12)
“I also believe that for some [patients] it feels better if a man enters the room…or a woman. Some just cannot connect with people of one sex or the other.” (H04, 49)
“I think, men tend to believe and accept more what is said by a male doctor.” (P01, 18)
Respondents were ambivalent whether trust and cooperation are gender-specific: Some felt that female patients were more cooperative in finding problem-oriented solutions and showed higher trust in HCPs advice. Others felt that trust is less a question of gender but of character and personal experiences.“I feel that they [men] are more reluctant to take advice from a women than a man, specifically male patients from specific cultural backgrounds.” (H07, 57)
Category 4: Use of professional supportive measures
“I think that women more often say what they want or don’t want. They handle their disease and needs with more openness. Women rather than men tell that they want to talk to someone or that they wish to take part in supportive interventions, such as art or music therapy.” (P07, 6)
“In my perception, women accept those [psychosocial support interventions] much better, not all women, but with consistence. Music therapy, art therapy, psychosocial care…. Maybe this also arises from the fact that supportive measures are often offered by women.” (H10, 24)
Category 5: Activation of informal social networks
“It is hard for me to adapt to the physical symptoms I experience. I always said, I will do my stuff whatever happens. That’s how I am, how many men are. It was hard for me to realize that I can’t 'pick the peas' myself anymore.” (P02, 56)
“that women are indeed more concerned about how caregiving will affect their family. That they don’t want to be a burden to them.” (P01, 24)
Category 6: Decision-making
“Women more often seek for counselling than men do. Men rather decide on their own, while women take the decision in partnership with their family and the team.” (H10, 27)
“I think both men and women want to go home. Also, families wish to take patients home so that the patient does not think to be pushed away.” (H12, 24)
“One is so familiar with home…who wants to go? Rather, one lets someone into home to help caring for the patient.” (P06, 52)
“I think that men are more often demanding it and put pressure on women: ‘You always have cared for me, now go on with caring for me.’ And women rather say ‘He will not make it on his own.’”.(P03, 51)
“Treatment at end of life… Is there pain? Is all hope for cure gone? If yes, I think men and women just want the same: to die without pain”. (P08, 47)
Category 7: Preservation of autonomy and identity
“I have a strong need for autonomy… I am very sensitive if someone interferes in things, which are not his business and which I have thought about thoroughly. I want to be the one saying ‘I need help’.” (P03, 28)
“In case of a terminal illness men feel more helpless and without power because they can’t continue their living habits and fulfil their social roles, they lose ability to steer decisions. We then often notice a certain… not anger, but struggle with fate.” (H02, 56)
Awareness of underlying normative ideas
“Excluding the character of a person, I think that women are more cooperative than men are. Because in a man, due to genetic reasons, alpha behavior might come up, to be the lord: ‘I am the boss and I have a problem to subordinate’.” (P08, 29)