Enhancing nurses’ communication about psychosocial needs and changes in intimacy and sexuality in patients with advanced cancer: a mixed-method study

Abstract

Introduction

Patients with advanced cancer often experience psychosocial needs due to the diagnosis or treatment. Despite the importance of these needs, nurses often feel reluctant to address them, especially with regard to changes in intimacy and sexuality.

Aim

To evaluate whether hospital nurses’ competences and practices regarding communication about psychosocial needs, including changes in intimacy and sexuality, with patients with advanced cancer, improved after training.

Methods

Between 2022 and 2023, we conducted a mixed methods study in six hospitals in The Netherlands. Data were collected three months before and three months after the training course. Perceived competences and documentation regarding communication about psychosocial needs were determined using a survey questionnaire, patient record screening, and semi-structured interviews with nurses.

Results

In total 53 hospital nurses participated in the training. Of these participants, 50 nurses completed the survey before the training and 33 after the training. More nurses reported feeling competent in addressing psychosocial needs three months after the training as compared to before (78.8 % and 46.0 %, respectively; p < 0.01), as well as in addressing intimacy (90.9 % and 64.0 %, respectively, p < 0.02) and sexuality (84.8 % and 50.0 %, respectively, p < 0.01). In addition, 83 electronic patient records were screened before the training and 102 after the training. This revealed that only limited notes were made regarding psychosocial needs, and especially regarding changes in intimacy or sexuality. In interviews, nurses mentioned that they felt reluctant to make notes about sensitive topics. Furthermore, they added that they still perceived a lack of time to discuss psychosocial needs, and felt discomfort in addressing intimacy and sexuality.

Conclusion

After the programme, more nurses felt competent in discussing psychosocial needs in patients with advanced cancer, especially with regard to changes in intimacy and sexual functioning. The training had little effect on nurses’ notes about psychosocial needs in patient records; the focus remained on physical aspects. Even when they discussed changes in intimacy or sexuality, nurses felt reluctant to document discussions about such sensitive topics.

Contribution of the paper.

What is already known

• -Advanced cancer can have a detrimental impact on a patient’s psychosocial outcomes
• -Nurses hardly address changes in intimacy and sexuality in patients with cancer
• -Nurses perceive barriers, such as lack of time or discomfort with sexuality

What this paper adds

• -After training, more nurses felt competent in discussing psychosocial needs
• -After training, nurses found it easier to address changes in intimacy and sexuality
• -Nurses still perceive barriers, such as lack of time or discomfort with sexuality
• -Documentation in patient records is insufficient, especially for intimacy and sexuality

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1. Introduction

Advanced cancer and its treatment can have a detrimental impact on a patient’s quality of life and psychosocial outcomes (Kolsteren et al., 2022; Buiting et al., 2019). Patients diagnosed with advanced cancer, i.e. unlikely to be cured or controlled with treatment (White et al., 2021), may experience fear, uncertainty, stress and concerns about the impact on their well-being, functioning, relations with partners and other social contacts, work and finances (Kolsteren et al., 2022; Hart et al., 2022). In these areas they may have psychosocial needs, which can be seen as an umbrella term for psychological, emotional, cognitive, spiritual, relational or other social needs (Schouten et al., 2016; Parry et al., 2012). One of the aspects that is often affected by the cancer diagnosis and treatment is a patient’s intimate relations and sexual functioning; this change in turn is associated with a higher risk of depression, stress and reduced quality of life (Alappattu et al., 2017; Schover et al., 2014; Schover, 2019; Sadovsky et al., 2010). These changes can persist for a longer period of time and can be very distressing for patients with cancer and their partners or other close relatives (Schover et al., 2013).

In daily practice, changes in intimacy and sexuality are hardly discussed at all by nurses (Azar et al., 2022; Krouwel et al., 2015; Fennell and Grant, 2019), though these topics may be important for patients. In a previous study, 65 % of patients with cancer expressed a need for information about changes in sexuality (Bates et al., 2016). In our study, sexuality is defined as a fundamental component of an individual’s existence, encompassing aspects such as sexual self-concept, sexual functioning and sexual relationships (de Vocht et al., 2011; Woods, 1987; (WHO) WHO 2006), sexual health, sexual pleasure, sexual awareness, self-esteem and sexual orientation ((WHO) WHO 2006; Laumann et al., 2006; Mitchell et al., 2021). Intimacy is a concept closely related to sexuality, and can be characterized as a quality of interpersonal relationships in which individuals have mutual feelings of trust, connectedness, caring and emotional closeness and are able to openly communicate their thoughts and feelings (Timmerman, 1991). Both emotional intimacy (e.g. sharing thoughts and feelings) and physical intimacy (e.g. touching and closeness) can be involved in intimate relationships (Timmerman, 1991).

Psychosocial needs can change during the illness trajectory, and conversations between nurses and patients about these changing needs are important in providing patients with the care they need. However, healthcare professionals often perceive barriers to discussing such needs, such as a lack of time, discomfort when addressing more sensitive topics such as sexuality, and a lack of knowledge, skills and training (Wang et al., 2018; Eeltink et al., 2018; Yıldırım et al., 2024). To overcome these barriers, it is suggested that the use of communication tools, such as the Distress Thermometer and the stepwise PLISSIT-model (Permission, Limited Information, Specific Suggestions and Intensive Therapy), can assist healthcare professionals in addressing both psychosocial needs and changes in sexuality (Arends et al., 2024; van Nuenen et al., 2017). The Distress Thermometer is considered valid for assessing and monitoring psychosocial needs in patients with (advanced) cancer (VanHoose et al., 2015; Riba et al., 2023; Skaali et al., 2024). This tool is patient self-reported and consists of a 0-to-10 rating scale (‘thermometer’). In addition, the patient can identify sources of distress through a problem list, and a question concerning need for referral (Tuinman et al., 2008). A previous study among nursing professionals working in hospitals found that the Distress Thermometer structures communication with patients about psychosocial needs (van Nuenen et al., 2017).

In addition to the Distress Thermometer, the stepwise PLISSIT model can be used to address changes in intimacy in sexuality (Arends et al., 2024). Sexuality is included in the problem list of the Distress Thermometer, but often seems not to be addressed or to be overlooked (Wang et al., 2018; Clover et al., 2016). Use of PLISSIT was found to be feasible for e.g. nursing professionals in addressing changes in intimacy and sexuality, and had a positive effect on patients’ sexual functioning and quality of life (Arends et al., 2024). To improve nurses’ competences and practices regarding conversations about psychosocial needs, including changes in intimacy and sexuality of patients diagnosed with advanced cancer in hospital settings, we developed a multi-component programme. A training course on communication about psychosocial needs, and the use of the PLISSIT model and Distress Thermometer, was embedded within this multi-component programme.

1.1. Objective

This study aimed to evaluate whether hospital nurses’ competences and practices regarding communication about psychosocial needs, including changes in intimacy and sexuality, improved after training. Therefore, we answered the following research questions:

• 1.What are the perceived competences and practices of hospital nurses regarding communication with patients with advanced cancer about psychosocial needs, including changes in intimacy and sexuality, three months after the training as compared to just before the on-site training?
• 2.How do the hospital nurses evaluate the training in communication about psychosocial needs and its impact?
• 3.Is there more documentation in the electronic patient records about psychosocial needs, including regarding intimacy and sexuality, three months after the training as compared to three months before?

2. Method

2.1. Study design

To address the research questions, a mixed methods design was used. Data were derived through surveys, by screening patient records and through semi-structured individual interviews with nurses. The study took place between July 2022 and May 2023.

2.2. Setting and participants

Representatives from hospitals were invited to participate in the development, implementation and evaluation of the multi-component programme through a call from palliative care networks in The Netherlands. This resulted in the recruitment of six hospitals: two university hospitals, three large teaching hospitals and one general hospital. Oncology inpatient, outpatient and daycare departments were involved.

At least one registered nurse was appointed in each department as the key contact person, selected by the representatives from hospitals who applied to participate in the study. The key contact person was tasked with supporting their colleagues in the implementation of the programme within their own department. These key contact persons also participated in co-creation sessions, as described below, and were the primary point of contact for the researchers. Through key contacts, other relevant stakeholders such as nurses, medical specialists and patient representatives were invited to participate in co-creation sessions.

2.3. Development of a multi-component programme

For the development of the multi-component programme, we used the principles of co-creation (Migchelbrink 2022; Bate, 2007; Robert et al., 2015). In eight co-creation sessions, programme elements were discussed, selected and evaluated with a co-creation team consisting of nurses, clinical nurse specialists, medical specialists, patient representatives, managers, policymakers, trainers and researchers (Supplemental Material 1). The multi-component programme included strategies for embedding conversations in daily routines, such as identifying champions and stakeholders for implementation, a blueprint for implementation, and encouraging discussions of notes in patient records within teams (Supplemental Material 2). As part of the programme, the co-creation team developed a training course in communication about psychosocial needs and the use of the Distress Thermometer and PLISSIT model. The training course consisted of a brief online individual module and a one-day group training session on-site in each participating hospital. The on-site part of the training course consisted of theory, followed by practising communication skills with training actors. The training course was provided by an experienced trainer, supported by a researcher [researchers initials here]. Nurses and clinical nurse specialists, hereafter jointly referred to as nurses, were the primary target group for this training. As part of the training, the multi-component programme involved peer coaching of participants by an experienced trainer two months after the on-site training session. The one-day training session and peer coaching sessions were delivered to small groups of participants in the participating organizations, with a maximum of twelve participants per group. Nurses were invited by the key contact persons to participate in the training session and other parts of the multi-component programme.

2.4. Data collection

To address the research questions, various methods and instruments were used. First, a survey was developed, which was largely based on a questionnaire developed by Grondhuis et al. to identify competences in discussing sexuality with patients with prostate cancer (Grondhuis Palacios et al., 2019). The research team [researchers initials here] rephrased the items to fit with our research questions and population, i.e. intimacy and sexuality in patients with advanced cancer. Furthermore, we duplicated the questions to assess competences in discussing psychosocial needs in general in separate questions. Subsequently, in the research team we critically assessed and selected items that covered our research focus. We initially selected 21 out of the 37 items in the Grondhuis questionnaire. This draft questionnaire was pretested for clarity and comprehensibility by four nurses using the ‘think aloud’ method (Ramey et al., 2006). Based on their comments, we excluded one question. After that, the final version was produced, comprising five items on demographics, thirteen items on perceived competences in discussing psychosocial needs with patients with advanced cancer and fourteen items on perceived competences in discussing changes in intimacy and sexuality (Supplemental Material 3). In addition, respondents could add free-text comments about the programme or questionnaire in a final open question.

The questionnaire was sent to the training participants by the key contact persons in the hospital prior to the training and three months after the training.

To explore the impact of the programme on documentation about psychosocial needs, including changes in intimacy and sexuality, electronic patient records were reviewed in the period up to three months before the training and until three months after the training. Both before and after training, twelve to fifteen records of patients with advanced cancer who were admitted to the hospital (inpatients) or had a consultation at the outpatient or daycare clinic were selected by the key contact persons. For the screening of the patient records, we developed a template to extract data on the setting, the patient’s gender and age category, relationship status (partner, single, unknown), cancer diagnosis and treatment, notes made on psychosocial needs as described in the problem list of the Distress Thermometer or issues regarding intimacy or sexuality, and use of the Distress Thermometer or PLISSIT (see Supplemental Material 4). The patient records were screened by a physician or nurse with a treatment relationship with the patient. Data were delivered to the research team on an aggregate level, without names or other identifying personal data.

To further explore the relevant perceived competences and practices, we conducted semi-structured individual interviews with nurses who participated in the training (see Supplemental Material 5). Nurses were recruited directly after the training by the researcher [researchers initials here] and through the key contact persons in each participating hospital. During the interviews, a patient case chosen by the interviewed nurse was discussed by zooming in on communication about changes in psychosocial needs and changes in intimacy and sexuality. Furthermore, nurses were asked about their perceived competences with regard to communication about psychosocial needs. In addition, they were asked about their experiences with the training course. The interviews were conducted by a female researcher with a nursing background [researchers initials here] who is experienced in conducting qualitative research and interviews. The interviews were held in an office in the hospital where the interviewed nurses worked, and lasted between 27 and 58 minutes . All interviews were audio-recorded and transcribed verbatim. At least two interviews per participating hospital were held. Data collection stopped after fifteen interviews.

2.5. Data analysis

The survey data, the extracted data from the electronic patient records and the interview transcripts were initially analysed separately. Subsequently, the outcomes of these separate analyses were compared to integrate the findings.

Descriptive statistics were used to describe demographic characteristics of nurses participating in the survey or interviews, and of patients whose records were screened. Survey data were analysed using descriptive statistics. Categorical data were described using frequencies and percentages. Differences in nurses’ perceived competences and knowledge before and after the programme were analysed using Pearson’s chi-square tests. In this analysis, we maintained the conditions that are required for the chi-square test: I) at least five expected values in each group, II) data must be categorical, and III) each observation should be independent of others (Bewick et al., 2003). Furthermore, a p-value of <0.05 was considered statistically significant.

Differences in patient record screening were analysed using descriptive statistics to determine whether there are indications that nurses document certain information more frequently in patient records after the programme as compared to before. Again, we described the data using frequencies and percentages. All statistical analyses were performed with SPSS Statistics 28 (IBM Corporation).

Interviews were analysed following the steps of thematic analysis as described by Braun and Clarke (2006). Three researchers [researchers initials here] read and re-read all transcripts and initially coded these transcripts to familiarize themselves with the data. This was followed by discussion between these three researchers to define the initial main codes. Subsequently, all transcripts were re-coded by two researchers [researchers initials here]. Then the codes were grouped into themes, which were reviewed and discussed within the research team [researchers initials here]. Lastly, these themes were compared with outcomes from the analysis of the data from the surveys and patient record screening. Appropriate quotes from the interview transcripts were selected to substantiate the main results. Qualitative data analysis was supported by MAXQDA 2022 (QDA software).

2.6. Ethical considerations

The Medical Ethics Committee of Amsterdam UMC location VUmc decided that the study did not fall under the scope of the Dutch Medical Research Involving Human Subjects Act, since the study does not concern medical research and the participants were not required to follow rules of behavior ((CCMO) CCoRIHS, 2025). Nurses who agreed to participate were aware of the scientific purposes of our study and signed informed consent statements for data collection. The research data were stored and analysed in accordance with the General Data Protection Regulation.

3. Results

3.1. Background characteristics

A total of 53 hospital nurses participated in the training (Table 1). Of these participants, 50 returned the questionnaire prior to the training, and 33 three months after the training. Most were female nurses and a substantial proportion had 1–5 years of work experience. Fifteen nurses participated in the individual interviews, mostly female nurses with >15 years of work experience.

Table 1.

Demographic characteristics.

Nurses	Questionnaire		Interviews
	T01,	T11,
	n=50	n=33	n=15
Gender – n female (%)	48 (96.0)	32 (97.0)	14 (93.3)
Age – median (IQR)	46 (38-53)	42.5 (36.5-53.5)	40 (35-53)
20-30 – n (%)	4 (8.0)	1 (3.0)	3 (20.0)
31-40 – n (%)	11 (22.0)	11 (33.3)	4 (26.7)
41-50 – n (%)	16 (32.0)	9 (27.3)	3 (20.0)
51-60 – n (%)	13 (26.0)	9 (27.3)	5 (33.3)
>60 – n (%)	3 (6.0)	2 (6.1)	-
Missing – n (%)	3 (6.0)	1 (3.0)	-
Setting – n (%)
Academic hospital	17 (34.0)	10 (30.3)	7 (46.7)
Teaching hospital	26 (52.0)	20 (60.6)	6 (40.0)
General hospital	7 (14.0)	3 (9.1)	2 (13.3)
Working as – n (%)
Registered nurse	42 (84.0)	25 (75.8)	11 (73.3)
Clinical nurse specialist	8 (16.0)	8 (24.2)	4 (26.7)
Work experience in years – n (%)2
<1	3 (6.0)	2 (6.1)	-
1-5	21 (42.0)	13 (39.4)	1 (6.7)
6-10	11 (22.0)	10 (30.3)	3 (20.0)
11-15	8 (16.0)	2 (6.1)	2 (13.3)
>15	7 (14.0)	6 (18.2)	9 (60.0)

Patients	Patient record screening
Patient records	T0,	T11,
	n=83	n=102
Setting
Outpatient clinic	72 (86.7)	76 (74.5)
Inpatient clinic	11 (13.3)	14 (13.7)
Day care	0 (0.0)	23 (22.5)
Gender patient – n male (%)	47 (56.6)	53 (52.9)
Age category of patient
18 – 30	0 (0)	1 (1.0)
31 – 40	4 (4.8)	3 (2.9)
41 – 50	10 (12.0)	16 (15.7)
51 – 60	17 (20.5)	26 (25.5)
61 – 70	24 (28.9)	30 (29.4)
Older than 70	28 (33.7)	26 (25.5)
Patient’s relationship status
Single	10 (12.0)	25 (25.5)
Partner	51 (61.5)	70 (68.6)
Unknown/ not provided	22 (26.5)	7 (6.9)
Cancer type
Breast cancer	10 (12.0)	17 (16.7)
Prostate cancer	17 (20.5)	18 (17.6)
Bladder cancer	3 (3.6)	7 (6.9)
Oesophageal cancer	5 (6.0)	3 (2.9)
Colon cancer	8 (9.6)	11 (10.8)
Pancreatic cancer	9 (10.8)	9 (8.8)
Other	31 (37.3)	37 (36.3)
Treatment
Chemotherapy	25 (30.0)	53 (52.0)
Immunotherapy	6 (7.2)	11 (10.8)
Hormone therapy	3 (3.6)	15 (14.7)
Radiation	0 (0)	13 (12.8)
Medication	13 (15.7)	0 (0)
Combination of therapies	27 (32.5)	6 (5.9)
Other	9 (10.8)	27 (26.5)

¹T0 = 3 months before training; T1 = 3 months after nurses and other healthcare professionals took the training.

²Work experience is number of years after graduation as nurse (RN).

Furthermore, 83 patient records were screened before the training, and 102 records after the training. In total, 100 of the patients were male (54 %) and the majority were aged 61 or older (Table 1). The interviewed nurses discussed patients with varying cancer diagnoses such as prostate cancer, breast cancer, colorectal cancer or leukemia, ranging in age from young to old.

3.2. Perceived changes in nurses’ competences

The results from the survey indicated that more nurses felt competent in discussing psychosocial needs three months after the training (78.8 %) as compared to just before (46.0 %) (p < 0.01) (Table 2). In addition, fewer nurses felt the need to increase their knowledge after the training (54.5 %) as compared to before (94.0 %) (p < 0.01). In interviews, nurses confirmed that they felt more competent to discuss psychosocial needs with their patient, seeing this as part of their role.

“That’s really what we do as case managers, flagging problems and checking if there’s a solution for them, or what someone needs. And what can help someone.” (V02)

“The sexuality, intimacy is always a bit of a sensitive subject […] I have to really push myself to do it. But that other part, the psychosocial side, that’s a real part of the job.” (V15)

Table 2.

Outcomes from the questionnaire on nurses' competences and knowledge related to conversations about psychosocial needs and changes in intimacy and sexuality.

Competences related to conversations about psychosocial needs
	T01	T1	P-value2
	n=50	n=33
10. Do you ever revisit the topic of psychosocial needs during follow-up visits, readmissions or other care moments?			∼3
(almost) never – n (%)	1 (2.0)	-
Sometimes – n (%)	11 (22.0)	4 (12.1)
(nearly) always – n (%)	38 (76.0)	29 (87.9)
11. Do you ever ask a patient or partner about the extent to which the treatment affects their relationship?			∼
(almost) never – n (%)	7 (14.0)	2 (6.1)
Sometimes – n (%)	27 (54.0)	21 (63.6)
(nearly) always – n (%)	16 (32.0)	10 (30.3)
14. Do you ever discuss the potential impact of a treatment on the patients’ psychosocial needs?			∼
(almost) never – n (%)	4 (8.0)	1 (3.0)
Sometimes – n (%)	12 (24.0)	4 (12.1)
(nearly) always – n (%)	34 (68.0)	28 (84.9)
15. Do you feel competent in discussing psychosocial needs4
Not competent – n (%)	-	-	-
Slightly competent – n (%)	31 (62.0)	8 (24.2)	<0.01
Competent – n (%)	23 (46.0)	26 (78.8)	<0.01

Knowledge related to conversations about psychosocial needs
13. In your current workplace is there sufficient information available about psychosocial needs to provide to your patient?			∼
Yes – n (%)	40 (80.0)	31 (93.9)
No – n (%)	2 (4.0)	1 (3.0)
Don’t know – n (%)	6 (12.0)	1 (3.0)
Missing – n (%)	2 (4.0)	-
16. Do you feel the need to increase your knowledge regarding conversations about psychosocial needs with patients with advanced cancer?			<0.01
Yes – n (%)	47 (94.0)	18 (54.5)
No – n (%)	1 (2.0)	14 (42.4)
Missing	2 (4.0)	1 (3.0)

Competences related to conversations about changes in intimacy and sexuality
23. Do you ever talk to patients about changes in intimacy?			n.s.5
(almost) never – n (%)	13 (26.0)	3 (9.1)
Sometimes – n (%)	23 (46.0)	17 (51.5)
(nearly) always – n (%)	11 (22.0)	12 (36.4)
Missing – n (%)	3 (6.0)	1 (3.0)
24. Do you ever talk to patients about changes in sexuality?			n.s.
(almost) never – n (%)	20 (40.0)	8 (24.2)
Sometimes – n (%)	18 (36.0)	12 (36.4)
(nearly) always – n (%)	9 (18.0)	12 (36.4)
Missing – n (%)	3 (6.0)	1 (3.0)
28. Do you feel competent in discussing changes in intimacy and sexuality?4
Not competent – n (%)	18 (36.0)	2 (6.1)	<0.01
Competent in discussing intimacy – n (%)	32 (64.0)	30 (90.9)	<0.02
Competent in discussing sexuality – n (%)	25 (50.0)	28 (84.8)	<0.01
Competent in advising about changes in intimacy – n (%)	8 (16.0)	18 (54.5)	<0.01
Competent in advising about changes in sexuality – n (%)	6 (12.0)	15 (45.5)	<0.01
Missing – n (%)	5 (10.0)	1 (3.0)

Knowledge related to conversations about changes in intimacy and sexuality
26. In your current workplace, is there sufficient information available about changes in intimacy and sexuality to provide to your patient?			<0.03
Yes – n (%)	16 (32.0)	21 (63.3)
No – n (%)	18 (36.0)	6 (18.2)
Don’t know – n (%)	13 (26.0)	5 (15.2)
Missing – n (%)	3 (6.0)	1 (3.0)
27. Do you know who you can refer patients to in your current workplace if they experience changes in intimacy and sexuality?			n.s.
Yes – n (%)	35 (70.0)	29 (87.9)
No – n (%)	12 (24.0)	3 (9.1)
Missing - n (%)	3 (6.0)	1 (3.0)
29. Do you feel the need to increase your knowledge regarding conversations about changes in intimacy and sexuality among patients with advanced cancer?			<0.01
Yes – n (%)	44 (88.0)	19 (57.6)
No – n (%)	-	13 (39.4)
Missing	6 (12.0)	1 (3.0)
30. Do you feel a need for more knowledge about changes in intimacy and sexuality among patients with advanced cancer?			<0.01
Yes – n (%)	44 (88.0)	20 (60.6)
No – n (%)	1 (2.0)	12 (36.4)
Missing	5 (10.0)	1 (3.0)

¹T0 = 3 months before training; T1 = 3 months after nurses and other health care professionals followed the training.

²Chi-square.

³Did not fulfill the Chi-square conditions. Therefore the results of the Chi-square was not shown.

⁴Multiple answers possible.

⁵Not statistically significant.

With regard to competences in communication about changes in intimacy and sexuality, survey results indicated a reduction in nurses not feeling competent (to 6.1 %) after the training compared with before (36.0 %) (p < 0.01, Table 2). Perceived competences improved after the training regarding both discussing and advising about changes in intimacy and sexuality. The largest improvement was seen in nurses feeling competent in advising patients about changes in intimacy after the training as compared to before (54.5 % and 16.0 %, respectively; P < 0.01). Again, fewer nurses felt the need to increase their knowledge after the training (57.6 %) as compared to before (88.0 %) (p < 0.01). Interviewed nurses confirmed they felt more competent, and that they found it easier to address intimacy and sexuality.

“Well, I think it’s easier for me to talk about this, especially sexuality and intimacy, since the training course. I learned that, you know, it’s good to talk about it and to spend time on it. I used to approach it in a bit more of a business-like fashion, perhaps, but now I take more time to ask about it. So I do think that’s changed since the training course, during the past year.” (V14)

“As to intimacy and sexuality, it helps me to just literally ask people if they think it’s okay for us to talk about it. And then you’ll immediately notice whether, well, is the patient holding back or can you ask more questions. And I didn’t do that before […] I used to ask in general ‘how are you doing? Are you running into any issues? No? Okay, then we’ll get started,’ and we just get going with the usual daily matters.” (V06)

3.3. Nurses’ evaluation of the training

Interviewed nurses characterized the training as good to have, helpful and energizing. They especially valued receiving practical tips and tricks.

“Yes, I thought it [the training course] was interesting. We also discussed tips of course, how you go about starting such a conversation, what are handy phrases you can use.” (V10)

In addition, nurses said that the training created awareness about conversations regarding psychosocial needs and changes in intimacy and sexuality. On the one hand there was an awareness that discussing these topics does not necessarily have to be tough, and on the other hand an awareness of the multi-disciplinary collaborations that can be established. Also, some nurses mentioned in the interviews that the training helped them to put the topics higher on the agenda of their team meetings.

“Well it really got me going; we’ve also invited the sexologist to the case manager meeting twice […] it’s been placed on the agenda more now.” (V09)

Some nurses felt reluctant about practising with training actors during the training, while other nurses found this part of the training helpful as well.

“I’m not really into the role playing; I hated that.” (V10)

“I really enjoyed practising with those actors. And it was good to see how colleagues do it, to learn from each other or think like hey, I do it this way, but that way might also work actually… or I do it this way, but I could do it differently. I thought that was very valuable.” (V14)

Furthermore, nurses mentioned in the interviews that the training helped them overcome barriers preventing them from starting conversations about sensitive topics, such as changes in intimate relations and sexual functioning. They became aware that addressing such topics does not necessarily have to be difficult.

“Maybe just becoming a bit more aware that it doesn’t have to be a really weighty conversation. As I said, when I’d just graduated as a nurse I got really nervous about these types of subjects. I don’t feel that way now. But the training also showed that there are different ways to talk about it, and that it doesn’t always have to be about sex.” (V04)

However, some barriers remained after the training (Fig. 1, Fig. 2). In addressing psychosocial needs, lack of time was still perceived as a key barrier. The need to prioritize communication about illness, physical problems and the treatment, rather than communication about psychosocial needs, was another barrier mentioned in both the survey and interviews.

“You often get onto the physical part, how things are going at home with the side effects of the chemotherapy, in terms of fatigue, nausea, self-esteem — that comes up pretty quickly because a lot of treatments are focused on chemo, so there is hair loss for example, so that comes up often.” (V06)

Fig. 1.

Nurses' experienced barriers in discussing psychosocial needs before and after training.

Fig. 2.

Nurses' experienced barriers in discussing changes in intimacy or sexuality before and after training.

Nurses experienced other barriers too in addressing changes in intimacy or sexuality, as was found in both the survey and the interviews. Besides discomfort with the topic, nurses mostly reported a lack of skills and lack of knowledge as a barrier when addressing these changes (Fig. 2).

3.4. Documentation of psychosocial needs

Patient record screening revealed many notes related to psychosocial needs, both within the three-month period before the training (in 78.3 % of patient records) and in the three-month period after the training (in 86.3 % of patient records)(Table 3). The focus of these notes was predominantly on physical problems related to psychosocial needs, that are included in the problem list in the Distress Thermometer (51.8 % before training, 57.8 % after training). This focus on physical aspects was also confirmed by interviewed nurses.

“The physical aspect yes, because that’s the easiest part to solve. I try a standard basic package […] physical side, nausea, fatigue, how are your energy levels, pain, how are things at home? Did you run into any issues? That’s pretty much the standard package.” (V06)

Table 3.

Results of patient record screening.

Patient record screening	T01	T1
	n=83	n=102
Which healthcare professional did the reporting in the record?2
Physician	28 (33.7)	48 (47.1)
Nurse	37 (44.6)	60 (58.8)
Clinical nurse specialist	21 (25.3)	32 (31.4)
Other	5 (6.0)	6 (5.9)
Unknown	15 (18.1)	15 (14.7)
In the past 7 contact moments, were there any notes about psychosocial needs?
Yes	65 (78.3)	88 (86.3)
No	18 (21.7)	14 (13.7)
If there were notes about psychosocial needs, which domains of the Distress Thermometer did they address?2
Practical	11 (13.3)	14 (13.7)
Family/social	11 (13.3)	29 (28.4)
Emotional	20 (24.1)	29 (28.4)
Religious/Spiritual	10 (12.0)	7 (6.7)
Physical	43 (51.8)	59 (57.8)
Unknown	11 (13.3)	15 (14.7)
Referral to other healthcare professional	0 (0)	5 (4.9)
In the past 7 contact moments, were there any notes about intimacy or sexuality?
Yes	8 (9.6)	14 (13.7)
No	75 (90.4)	88 (86.3)
If there were notes about intimacy and sexuality, what did they concern?2
Information about changes in intimacy	2 (2.4)	7 (6.7)
Information about changes in sexuality	5 (6.0)	7 (6.7)
Patient referred to other healthcare professional	0 (0)	1 (1.0)
Other	2 (2.4)	5 (4.9)
Was any note made of a communication tool to discuss psychosocial needs or intimacy and sexuality, such as the Distress Thermometer or PLISSIT?
Yes	5 (5.0)	5 (4.9)
No	63 (75.9)	97 (95.1)
Unknown/missing	15 (18.1)	0 (0)
If any communication tool, which one?
Distress thermometer	5 (5.0)	5 (4.9)
PLISSIT	0 (0)	0 (0)

¹T0 = 3 months before training; T1 = 3 months after nurses and other health care professionals followed the training.

²Multiple answers possible.

However, few notes were made about changes in intimacy or sexuality: such notes were made in 9.6 % of the records in the three-month period before the training and in 13.7 % of the records during the three months after the training. In interviews, nurses said they felt reluctant to make notes about intimacy or sexuality in the patient record files. The reluctance was caused by the perceived sensitivity of the topic and because patients would have access to the record files.

“Yeah, that’s something I don’t do as much […] I feel like it’s something very private, so I think well, do I have to share this with everyone [colleagues] who comes after me, right? I don’t know if what I’m saying now is correct, but that’s how it feels.” (V04)

Instead, interviewed nurses said they were able to remember the conversations they had with their patients and therefore felt less compelled to document this information.

“I used to write more down, but I don’t do that as much now because the patients can read everything. And I think that’s a bit complicated, […] because then I write it down like a sort of cheat sheet. Because I don’t feel the need to write all that down. No, I know this, I’ll remember it. And I do remember it […] but this situation does have me on edge.” (V03)

Use of communication tools, e.g. the Distress Thermometer or PLISSIT model, was documented in 5 % of patient records in the three-month period before the training and again in 5 % in the three-month period after the training. In interviews, some nurses said that after they took the training they sometimes used the Distress Thermometer; however, they did so inconsistently or without follow-up in a later consultation. Other nurses mentioned not using a tool (yet) or were still deciding which tool to use.

“Very occasionally, we give people a burden test, a questionnaire that asks how much of a distress they [patients] experience in different areas. I sometimes discuss it here in the consulting room, but often I just show it briefly and then give it to them.” (V14)

“I’m not using a model yet. We are looking into […] what model we’d like to use for the conversations to make sure we’d all discuss the same topics. But I’m not using a model at the moment. I’m still playing it by ear for now.” (V10)

4. Discussion

Nurses benefitted from a training course as part of a programme that was developed to enhance their communication about psychosocial needs and changes in intimacy and sexuality with patients with advanced cancer. Moreover, more nurses perceived themselves to be competent after the training, especially in discussing changes in intimacy and sexuality. Additionally, the interviewed nurses valued the training, characterizing it as good to have, helpful and energizing. In general, the patient record screening revealed many notes in patient records about psychosocial needs, while only few notes were made regarding changes in intimacy and sexuality.

In our study, the percentage of nurses not feeling competent to discuss changes in intimacy and sexuality decreased significantly, from 36 % before the training to 6 % after. This is in line with previous studies, which also revealed that the attitudes, confidence and knowledge of healthcare professionals, predominantly nurses, improved after training in communication about sexuality in patients diagnosed with cancer (McCaughan et al., 2021; Hordern et al., 2009; Jonsdottir et al., 2016). These studies focused on addressing sexual health and sexual well-being, while in our study we also addressed changes in intimacy.

None of the nurses who participated in the training felt ‘not competent’ in addressing psychosocial needs both before and after training. They either felt ‘slightly competent’ or ‘competent’. These findings are in line with research conducted by Yildirim et al., who found that nurses classified their skills related to psychosocial care at a moderate or high level (Yıldırım et al., 2024). Overall, this is positive as many patients with advanced cancer experience psychological, social and spiritual challenges (Geijteman et al., 2024), and screening of psychosocial needs is recommended throughout the illness trajectory, preferably with validated screening tools (Ferrell et al., 2018; (V&VN) VVN 2022; Springer et al., 2023). Moreover, the use of validated tools may help nurses to initiate conversations about psychosocial needs and may also help them to overcome barriers for such conversations, e.g. discomfort with the topic, a lack of time or the perceived need to prioritize discussion of the diagnosis or treatment (Wang et al., 2018; Eeltink et al., 2018; Arends et al., 2024; Güner et al., 2024). Nonetheless, after the training, nurses mentioned in interviews that they hardly ever used screening tools such as the Distress Thermometer and PLISSIT. Although the use of these tools received considerable attention in the training course, this was not reflected in the interviews or patient record screening. Similarly, the findings of a survey study by Kozlov et al. showed that validated tools were not used frequently (Kozlov et al., 2018). This poses a risk that nurses may focus on certain topics while overlooking other topics that are considered sensitive, i.e. changes in sexuality (Kelder et al., 2024). A lack of structural screening of psychosocial needs may further result in psychosocial needs remaining undetected, underreported and unmet (Thekkumpurath et al., 2008).

Our results revealed that nurses perceived conversations about changes in sexuality as difficult. Some were still reluctant to address this topic three months after the training. This raises the question whether every nurse needs to be proficient in addressing this topic. A team approach, as described by de Vocht et al., may be appropriate to provide optimal care for patients and to develop clear roles in discussing these matters (de Vocht et al., 2011). In this approach, team members have complementary roles in addressing changes in intimacy and sexuality (de Vocht et al., 2011). Moreover, this approach can help nurses who feel uncomfortable discussing these topics to recognize patients’ needs and appropriately refer them to their colleague, rather than ignoring or avoiding these issues (de Vocht et al., 2011). Then, changes can be discussed with every patient, without every nurse having to be proficient in addressing the topic.

The results of the patient record screening indicated that nurses’ notes mainly emphasized physical aspects, which is in line with results reported in earlier studies (Farzi et al., 2022; Zamanzadeh et al., 2014; Farrell et al., 2020). However, even if documentation of psychosocial needs may be limited in some cases, this does not necessarily have to imply that topics remain undiscussed; if a patient did not mention any needs, nurses obviously chose not to document that fact. Moreover, some nurses in our study reported feeling reluctant to write notes about sensitive topics. Optimal nursing documentation is a crucial aspect of nursing practice, playing a substantial role in improving the quality of nursing care provided to patients (Asmirajanti et al., 2019; Kamil et al., 2018). However, existing literature also shows that patients diagnosed with cancer still experience unmet psychosocial needs (Hart et al., 2022; Springer et al., 2024; Paterson et al., 2023). Inadequate or incomplete nursing documentation may lead to inadequate communication between caregivers, a lack of details on the nursing interventions provided and the patients’ response to these interventions (Asmirajanti et al., 2019; Wang et al., 2011).

5. Implications

Our study showed that more nurses felt competent in discussing psychosocial needs after they received training in communication about psychosocial needs and changes in intimacy and sexuality. The training created awareness of the importance of such conversations. To increase the chance that what has been learned is used in nurses’ daily practice, we integrated the training in a multi-component programme that covered strategies at both the organizational and individual levels. For instance, at the organizational level it was important that each of the participating hospitals had an active key contact person who motivated the nurses to participate in the training and to use what had been learned. And at the individual level it was important that individual nurses could receive feedback and coaching from an experienced trainer with a nursing background. For future implementation, we recommend using all components of the programme to obtain a sustainable improvement in daily practices.

We found that nurses still perceived barriers in discussing and documenting changes in intimacy and sexuality after the training. To further reduce these barriers, e.g. lack of time, lack of knowledge, and discomfort, a team approach might help in clarifying who is competent in addressing changes and who feels more reluctant (de Vocht et al., 2011). Key contact persons can provide support to their colleagues, and keep the topic on the team agenda for awareness.

6. Methodological considerations

A strength of this study is the mixed-methods design: we used a quantitative survey, patient record screening and interviews with nurses who participated in the training. This enabled us to use the findings in the interviews to enrich and explain the findings from the survey and record screening. Nonetheless, this study also had some limitations. First, the survey and interviews concerned self-reports by nurses. It is possible that the self-reported perceptions of nurses might not reflect the actual situation, i.e. that they over- or underestimate their competencies. Yet interviews revealed honest answers, and patient cases as presented by the nurses underlined their answers. A second limitation in our study is that the questionnaires before and after the training could not be paired since nurses returned their questionnaire pseudonymized. However, our study showed variation in the experiences of nurses who participated in the programme. Besides, results from the patient record screening and interviews confirmed the findings from the survey. Therefore, it is less likely that our findings are influenced by nurses being relatively positive or outspoken.

7. Conclusion

Overall, nurses perceived improvement in their competences regarding conversations about psychosocial needs, and especially in addressing changes in intimacy and sexuality after the training. Still, lack of time and discomfort with addressing intimacy and sexuality are perceived as barriers for addressing these topics. The training hardly affected nurses’ likelihood to make notes about psychosocial needs in patient records: the focus remained on physical aspects. Even when they discuss changes in intimacy or sexuality, nurses feel reluctant to document information about such sensitive topics.

Funding statement

Financial support for this study was provided entirely by a grant from the Netherlands Organization for Health Research and Development (ZonMw) (Grant number: 80-84400-98-711). The funding agreement ensured the authors’ independence in designing the study, interpreting the data, writing and publishing the report.

CRediT authorship contribution statement

Susanne A.M. Arends: Writing – review & editing, Writing – original draft, Methodology, Investigation, Formal analysis, Conceptualization. Corien M. Eeltink: Writing – review & editing, Writing – original draft, Methodology, Investigation, Formal analysis, Conceptualization. Floortje K. Ploos van Amstel: Writing – review & editing, Investigation. Astrid W. Oosten: Writing – review & editing, Investigation. Donna C. Ruijter: Writing – review & editing, Investigation. Nelleke van der Loo: Writing – review & editing, Investigation. Barbara Harterink-Poker: Writing – review & editing, Investigation. Anneke L. Francke: Writing – review & editing, Writing – original draft, Supervision, Methodology, Investigation, Formal analysis, Conceptualization. Irene P. Jongerden: Writing – review & editing, Writing – original draft, Supervision, Methodology, Investigation, Formal analysis, Conceptualization.

Declaration of competing interest

The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper.