(2) HPs’ views of the MSW|CC
Thematic analysis on HPs’ views of the MSW|CC identified two main themes: 1) Sexual support: It’s the HP’s role but there is room for improvement and 2) the MSW|CC: meeting HPs’ needs.
Theme 1: Sexual support: It’s the HP’s role but there is room for improvement.
More often participants reported sexual support in cancer care was side-lined, with Participant 16 (P16) reflecting this was “maybe due to people being embarrassed including myself as a HP and the patient.” Sexual support was usually limited to the treatment consent process, therefore patients seem to be afforded little support to navigate sexual challenges later in the treatment trajectory, as illustrated below.
“I do it [provide sexual support] pre surgery and probably do not revisit unless raised as an issue in the health needs assessment form.…” (P16)
This practice was considered reflective of a wider culture of limited provision of HP-led sexual support in cancer care and echoed by P9 sharing “we are not doing this”, which for some HPs raised concerns that the needs of some patients were not being met.
“Patients are probably wondering if people are going to ever talk to them about not having an erection again. It really does get side-lined.” (P14)
Sexual care was considered by HPs to be both important and integral to the provision of person-centred cancer care. This was challenging, with HPs having trouble initiating sexual support conversations or offering support, amplified in the presence of a partner or family member with HPs perceiving that “patients don’t want to speak out of turn about private relationships.” (P8)
Cognisant that providing sexual support was the HPs role, participants also identified three main influences to providing sexual support, these were HP-related factors, patient characteristics and organisational setting. In considering HP-related factors, most participants reported they felt ill-equipped to address sexual problems, reflecting that they, alongside their oncology colleagues, lacked both knowledge and access to training.
“As HP we don’t have support for this, sometimes we get asked questions, but we need help.” (P17)
HPs specifically wanted skilled on how to approach sexuality sensitively, especially with older patients; to know the right language to use, and to be equipped with strategies to help patients cope and achieve sexual pleasure. There was also a desire for knowledge of referral pathways for additional support. Many participants identified that skill development was necessary to increase self-efficacy and reduce feelings of awkwardness or embarrassment during patient-professional consultations.
“Apart from the basic ways to do that [talk about sexual problems] I wouldn’t know much more than that… so there is definitely a learning need there about what else is available and how else that can be achieved.” (P16)
“I don’t have the right words to start a conversation, …any tool that can help us talk about normal bodily functions more openly and honestly is a good thing….” (P10)
Most participants agreed that providing sexual support was part of their role as a HP, yet some acknowledged that other members of the multidisciplinary team were better placed, for example the clinical nurse specialist or pelvic physiotherapist. Some reported they previously referred patients to voluntary/community sector cancer care providers for sexual support to avoid their own discomfort in undertaking such discussions.
“It’s not an easy thing for HPs to talk to patients about sexuality so you can signpost to Macmillan for more information.” (P13)
Patient characteristics such as sexual orientation, older age, and an age gap between HP and patient (where the HP was younger), were highlighted as influencing HPs’ decision-making on the provision of sexual support. It was noted that HPs provision of sexual support to same-sex couples was not routine practice, “only something that is talked about if we are forced to,” (P14) with a belief that this may be reflective of the more culturally conservative locale within NI. When patients were of an older age, often HPs considered sexuality to be less relevant or did not wish to be perceived as inappropriate; with P2 sharing concerns relating to whether the “husband has dementia or is dead…” yet also aware that there is a risk that older patients want support exemplified through by reporting, “maybe I’m wrong…I’m assuming…maybe they do.” Furthermore, HPs reported patient embarrassment could be reduced if the HP and patient were the same gender, although this could be indicative of HP preference to reduce personal embarrassment.
Organisational challenges to providing sexual support related to lack of time, privacy, and the change to virtual appointments due to Covid-19 restrictions. Participants had contrasting views on time, with P14 reporting, “I only have 20–30 mins to cover a lot of topics.” Contrary to this view, some described lack of time as an excuse to avoid addressing an uncomfortable topic, with others reporting there was time,
“I’m sure people will say this [they don’t have time] but I do have time. I work with 5 consultants and oncology team and on occasions I’m pressed but usually I have time.” (P16)
HPs provided examples of how to integrate these conversations during clinical care, to include physiotherapy massage, administration of intravenous chemotherapy, or holistic needs assessment consultations. HPs performing these roles may have greater autonomy to provide sexual care, which may not be indicative of all HPs within cancer care. The lack of privacy afforded by a curtained cubical was not conducive to having sexual support conversations. Furthermore, the transition to virtual appointments, due to COVID-19 restrictions, saw a decrease in sexual support conversations, an interesting finding given the potential privacy afforded, with P16 reporting,
“The problem at the minute now is that it because of COVID it is a virtual appointment and people are more reluctant to have these conversations... I encourage people to bring their partner with them or someone who they trust implicitly, virtually although this is not happening…partners are not on the speaker phone….” (P16)
Subtheme 2.2: Equips and empowers
The content within the MSW|CC was perceived as informative, it increased HPs’ knowledge of sexual challenges faced, patients’ and partners’ needs and desire for support across treatment trajectory, relevant advice, resources, and referral pathways. Frequently, participants reported learning new information on the psychosexual challenges, navigating new relationships, and for disease-specific sexual challenges such as managing a percutaneous endoscopic gastrostomy (PEG) tube or a colostomy/ileostomy. Furthermore, participants felt that the MSW|CC aided understanding and normalised sexual challenges, and equipped HPs to provide sexual support with Participant 12 reporting “I could anticipate and pull out as items in my toolkit [referring to the MSW|CC] to help me navigate conversations.”
The EASSi communication framework embedded within the resource was regarded as a reassuring guide to direct HPs’ communication. Participants acknowledged that EASSi provided them with advice for patients that was succinct, yet “practical” (P9) and “very reassuring…. because it is giving you a step-by-step guide.” (P10), HPs also welcomed the printable one-page EASSi framework for future reference. This communication framework was regarded as suitable for further adaption to help early career HPs communicate about other challenging healthcare issues.
Signposting within the resource, which included the hyperlinks to webpages, referral pathways and printable signposting sheets, was deemed helpful, particularly to facilitate communication with patients who were “too embarrassed to talk” (P17). The inclusion of the ‘couple’s communication activity’ within the signposting sheet was felt by some to be “quite challenging [for patients],” (P10) as patients and partners might find it difficult to discuss sexual behaviour with each other, although overall its benefits were thought to outweigh these concerns.
Strategies promoting self-efficacy, such as role-play with a colleague and goal setting were well received, complementing the communication framework, to improve confidence. HPs reported a sense of empowerment, with a readiness to put knowledge into action with one participant reporting “…see reading through that …I would go for it now.” (P17)
Subtheme 2.3: Acceptable and relevant resource
The MSW|CC content was considered acceptable to participants. It was perceived as “all encompassing” and “true to life” (P17) reflecting common patient reported clinical issues, for example, changing levels of sexual desire and changed in roles in the household “my wife has become my carer” (P18). Core messages were described as “positive” yet “realistic.” (P8)
Mostly participants highlighted that advice was aligned with current best practise, promoting strategies used by experts in the field, however, two issues were identified by some participants. Firstly, promotion of a retailed product, to customize the depth of penetration to reduce pain during sex was unknown to HPs, but on reflection HPs were interested to review the product as a potential device that could be recommended in future to patients; the second concerned HPs’ sensitivity when recommending the use of dilators to aid intercourse for patients with cervical cancer.
“This is what they are told to do after treatment and that has that whole stigma with them [patients] and they hate using them [dilators].” (P6)