ORIGINAL RESEARCH: EMPIRICAL RESEARCH – QUALITATIVE

The experience and perceptions of men with prostate cancer and their partners of the CONNECT psychosocial intervention: a qualitative exploration Eilis McCaughan, Suzanne McKenna, Oonagh McSorley & Kader Parahoo Accepted for publication 27 January 2015

Correspondence to S. McKenna: e-mail: [email protected] Eilis McCaughan BSc PhD RN Professor of Cancer Care Institute of Nursing and Health Research, University of Ulster, Coleraine, UK Suzanne McKenna BSc MSc PhD Research Associate Institute of Nursing and Health Research, University of Ulster, Coleraine, UK Oonagh McSorley BSc PhD RN Research Associate Institute of Nursing and Health Research, University of Ulster, Coleraine, UK Kader Parahoo BA PhD RMN Professor in Nursing and Health Research Institute of Nursing and Health Research, University of Ulster, Coleraine, UK

M C C A U G H A N E . , M C K E N N A S . , M C S O R L E Y O . & P A R A H O O K . ( 2 0 1 5 ) The experience and perceptions of men with prostate cancer and their partners of the CONNECT psychosocial intervention: a qualitative exploration. Journal of Advanced Nursing 71(8), 1871–1882. doi: 10.1111/jan.12648

Abstract Aim. To explore the experience of prostate cancer survivors and their partners of the CONNECT psychosocial intervention. Background. There is a scarcity of evidence relating to interventions to help men and their partners cope with the after affects of prostate cancer treatment. Design. This study employed a qualitative design for in depth exploration through couple interviews. The addition of a short process evaluation questionnaire was used to supplement the qualitative data. Methods. Semi-structured interviews were conducted between January 2012– October 2012 with a purposive sample of 11 couple dyads who had participated in the CONNECT intervention. Data were analysed using inductive content analysis. Simple descriptive statistics were used to analyse the findings from the questionnaire data. Results. Couples perceived benefits of participating in the intervention to include: opportunities to share experiences, gain validation, obtain information and engage in couple care. The expertise of the professional facilitator and group dynamics were highlighted as factors influencing the success of the intervention. Potential areas for improvement of the intervention were identified as being: further development of the sexual dysfunction component; incorporation of a partner specific session to better address their needs; determination of optimal delivery format and timing; and further tailoring of the components of the intervention. Conclusion. Although there were areas that could be further improved, this psychosocial intervention was valued by the participants. The insight gained from this qualitative exploration can be used to make the necessary changes before the intervention can be tested in a large randomised controlled trial. Keywords: cancer, CONNECT, couple’s experiences, men’s health, process evaluation, psychosocial, qualitative methods

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Why is this research needed?  Most studies on psychosocial support for prostate cancer have focused on interventions designed for men and there is a scarcity of evidence related to interventions designed for and delivered to couples.  Qualitative methodologies have proved useful in exploring

uncertainty about the future (Mason 2005, Ezer et al. 2011). To date, most studies on psychosocial support for prostate cancer have focused on interventions designed for men (Parahoo et al. 2013) and there is a scarcity of evidence related to psychosocial interventions designed for and delivered to both men and their partners.

aspects of prostate cancer such as men’s experiences and the role and experience of spouses but there is a lack of qualitative studies exploring psychosocial interventions.

What are the key findings?  This psychosocial intervention provided couples with opportunities to share and validate their feelings and experiences regarding prostate cancer. The group discussion provided them with strategies on how best to manage their own lives.  Information sheets developed for the intervention underpinned group discussion and increased participants understanding and enabled them to cope with their condition.  While participants appeared to value the intervention there was less satisfaction with the way the issue of sexual dysfunction was dealt with in some groups.

How should the findings be used to influence policy/ practice/research/education?  This is the first documented psychosocial intervention for men with prostate cancer and their partners in Northern Ireland and these qualitative findings validate its use from the couple’s perspective.  This study has provided critical insights to enable changes to be made which will enhance the effectiveness of this intervention designed to support men and their partners.

Introduction Prostate cancer is the second most common cancer in men and the fifth most common cancer in the world among individuals of both sexes combined (Cancer Research UK 2013). About one in six men will be diagnosed with prostate cancer during their lifetime (American Cancer Society 2013) and incidence rates in Western developed countries continue to rise. A large body of evidence suggests that a diagnosis of prostate cancer and the treatment that follows give rise to statistically significant physical and psychosocial problems, including sexual and urinary dysfunction, distress, uncertainty, anxiety, marital discord and depression. In addition, partners can often be more distressed than the men themselves experiencing a lack of information and 1872

Background To develop the evidence base and explore the feasibility and acceptability of a psychosocial couple-based intervention with prostate cancer patients and their partners in the UK the authors undertook to develop and to evaluate an intervention entitled CONNECT. The aim of the intervention was to improve participants’ belief that they are capable of managing their cancer and to encourage couples to take a team approach to the management of the illness through the provision of information and the development of self-management skills (McCaughan et al. 2013). The intervention was designed as a 9-week programme consisting of three group meetings (approximately 2 hours per session) on week one, three and nine, with additional telephone sessions with men and their partners on week five and seven. During the group sessions, couples were invited to participate in facilitator-led discussions on symptom management, sexual and urinary dysfunction, uncertainty management, positive thinking and healthy lifestyles. The importance of taking a couple approach to the management of the prostate cancer was emphasized. Sessions were supplemented by information sheets developed for the CONNECT programme. Findings from a randomized controlled trial investigating the intervention outline the challenges in recruiting individuals to the intervention (McCaughan et al. 2014), but indicate high levels of adherence to the intervention by those who did participate. In addition, there was a trend for more favourable outcomes across several domains for patients and partners who received the intervention over those who received usual care (McCaughan et al. 2014). While these results are encouraging, it was also thought necessary to conduct qualitative exploration of the intervention with couples to determine their perceptions and experiences of the intervention. Qualitative methodologies have proved useful in exploring other aspects of prostate cancer such as men’s experiences (Hagen et al. 2007, Lindqvist et al. 2008, Sinfield et al. 2008, Jonsson et al. 2010, O’Brien et al. 2010, Kazer et al. 2011, Rivera-Ramos & Buki 2011, Brunton et al. 2012, Campbell & Campbell 2013, Han et al. 2013, Wall © 2015 John Wiley & Sons Ltd

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et al. 2013) identification of need (Sanders et al. 2006, Carter et al. 2011, Sinfield et al. 2012), psychosexual issues (Maliski et al. 2008, Gannon et al. 2010, O’Brien et al. 2011, Rivers et al. 2011, Walker & Robinson 2011, 2012, Klaeson et al. 2013, Wittmann et al. 2013) , decision-making (Berry et al. 2003, Schumm et al. 2010), the role and experience of spouses (Couper et al. 2006, Bottorff et al. 2008, Ervik et al. 2013) and self-management and coping strategies (Oliffe et al. 2009a, Green et al. 2011, McSorley et al. 2014). However, a preliminary review for our study could only identify one paper describing a qualitative research design to explore psychosocial support specific to the prostate cancer population (Oliffe et al. 2009b). Given that in-depth insights can be gleaned from studies employing qualitative methodologies this study used such a design to explore the experience of prostate cancer survivors and their partners of the CONNECT intervention.

Prostate CONNECT

home of the participants between January 2012–October 2012. A semi-structured interview format with a set of open ended questions was used to explore issues and context relating to couples’ engagement in the intervention. Questions centred on exploring participants experiences of the intervention, including their thoughts on its relevance. A questionnaire similar to that developed by Cimprich et al. (2005) to evaluate the process of her intervention for breast cancer patients was used for the process evaluation. This short questionnaire included items related to self-management activities, programme content, format, duration and delivery and items related to usefulness, relevance and timeliness of the intervention. Questionnaires were distributed following completion of the intervention alongside postintervention outcome measures. Given that participants had been recruited at different stages posttreatment the average time from completion of initial treatment to data collection varied from approximately 7-10 months.

The study Ethical considerations Aim To explore the experience of prostate cancer survivors and their partners of the CONNECT psychosocial intervention.

Ethical review for this study was undertaken by an independent panel at the Regional Office for Research Ethics in Northern Ireland.

Design

Data analysis

This study employed a qualitative design for in depth exploration through couple interviews. The addition of a short process evaluation questionnaire was used to supplement the qualitative data.

An inductive content analysis methodology was adopted for the analysis of the qualitative data as the use of this approach is indicated where knowledge related to the subject area is lacking or fragmented; also it enables a systematic and objective means of describing and quantifying phenomena (Elo & Kyng€ as 2008). The procedure used is outlined by Burnard (1991) and includes a process of immersion in the data followed by ‘open coding’. The QSR NVivo programme was used to aid data management in this study. Simple descriptive statistics (frequency counts) were used to analyse the findings from the questionnaire data.

Participants All prostate cancer survivors and their partners who had been included in the intervention arm of a feasibility RCT investigating the CONNECT intervention (McCaughan et al. 2014) were invited to participate in this qualitative study. All participants were female. Of the 26 participants (13 male 13 female) who had been engaged in the intervention 19 (10 men with prostate cancer and 9 female partners) completed a process evaluation questionnaire and 11 couple dyads (n = 22) consented to participate in an interview. Written informed consent was sought from all participants.

Data collection Face to face interviews with couples (prostate cancer survivors and their partners) were held on one occasion in the © 2015 John Wiley & Sons Ltd

Rigour Fereday and Muir-Cochrane (2006) highlight the problem of fabricating evidence in the process of interpreting data and explain that this may not be an intentional process but constitutes the unintentional, unconscious ‘seeing’ of data that researchers expect to find. This brings about considerations of the internal validity and reliability of the results and the objectivity of the researcher, factors which are paramount in demonstrating rigour in qualitative studies 1873

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(Ohman 2005, Plummer-D’Amato 2008, Hannes et al. 2010). To minimize this phenomena from the outset the topic frameworks for interviews had been designed to optimize objectivity. The intention was that data collected would elicit the participants own views and minimize bias which may have arisen from the researchers knowledge of the subject area or any previous relationships established with participants. There had been minimal involvement between participants and the researchers conducting the interviews for this study. In addition, during data collection neutrality of the researchers was stressed with the aim of exploring all aspects of implementation including barriers and facilitators. In a further effort to promote rigour verification of independent thematic analysis was conducted by two members of the research team who had not been involved in data collection. Each independent set of themes were compared with each other and where there was disagreement between researchers consensus opinion was used to decide on whether to exclude or revisit the theme. After a final set of themes had been agreed on these were checked against the original transcripts. This was to ensure that the themes were representative of the data.

Findings Couples’ characteristics The average age of patients was 67
5 years and of partners was 65
0 years. All participants were Caucasian. With regard to medical history of patients, the most common treatment which had been received by male participants was hormone treatment, followed by radiotherapy.

Couples experiences of CONNECT Overall couples appeared to have a very positive experience of the intervention. They valued the varied delivery modes, the structure and the pace. The findings can be grouped into the following themes: sharing and validation; gaining information; and, couple care. Sharing and validation The theme of ‘sharing and validation’ was the principal concept which emerged from couples descriptions of their participation in the intervention. Participants described how from listening to the accounts of others they were able to make comparisons with their own treatment journey, moving them from a scenario where they were ‘sitting alone’ dwelling on the worry and uncertainty of the condition to a 1874

situation where they were receiving assurances and a sense of validation: You started to realize that everything you had thought and the things you had experienced were just so common with other people; you had those commonalities and something to share. Couple 3 – Male

Participants described how during the group work there was an ‘interchange of ideas’ on how best to manage their prostate cancer. Many of the symptoms experienced by different men were similar and they shared coping strategies, they had employed to manage specific symptoms: You generally lift things from other people, for instance one of the things that somebody said to me. . . stop drinking at 6 o’clock if you are going to the toilet a lot and you will get a better night’s sleep. Couple 2 – Male

There was also a sense that the group discussion had ‘prompted’ men to think about things that they had ‘buried’. Also, hearing the stories verbalized, allowed the men to see the journey they had made and how things were not as bad as they had been in the beginning: For me, at those three sessions we were at the interchange between the patients and the comparison of the side effects and how we felt and had progressed in our lives and that was extremely helpful. Couple 7 – Male

The finding from the process evaluation data that the majority of participants believed they had received ‘a lot’ of support from other participants (n = 14) and that they found the group sessions to be ‘very useful’ (n = 15) seems to support the emerging sense that sharing experiences in the group had been a key intervention component. It appeared that group discussions in large part tended to be steered by the men’s and not the partners’ or couples’ experience of prostate cancer. However, some partners acknowledged that this was the first time they had actually heard how the experience had been for their husbands and had highlighted for the partners, the magnitude of the experience: I had not fully appreciated how difficult it had been for him (her husband) after his treatment. When I heard what the men had to say it made me realize that maybe I had not been as understanding as I should have been.

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Some partners did state that they had found the period after treatment draining as their husband appeared to dwell on his prostate cancer and its symptoms. Partners felt reassured that the ‘irritation’ they sometimes felt had been experienced by other partners in the same situation and this made them feel less guilty: . . . I could identify with his wife because she was saying the strain of it and listening to you know, listening to him talking about his health! So at least it made you realize that, well, I’m not the only one thinking this way. Couple 1 – Partner

Gaining information From the analysis information provision emerged as another key component of the intervention. There was a perception that having an increased understanding better enabled participants to cope with their condition. Furthermore, information shared in the group, participants particularly liked the hand outs: Those hand outs, I read them thoroughly. If those things hadn’t been explained to me I don’t think I could handle it as well as I

Prostate CONNECT

right’ (n = 11 and n = 14 respectively). However, several participants felt that the amount of information was ‘almost too much’ or ‘almost too difficult’. Couple care It emerged from the interviews that the diagnosis of prostate cancer had impacted couples’ relationships in different ways with several couples reporting poorer communication: I knew all the time that you were holding things back from me and saying everything is alright. You knew all the time that I wasn’t telling you everything! Couple 3 – Male

Some couples did state that engaging in the intervention had had a positive effect on their communication. Several spoke of incidents on the way home from a group session of how the issues raised during the group continued to be discussed: . . . something that was said would trigger conversations between us afterwards and maybe we would have discussed things a bit more openly afterwards. Couple 3 – Partner

can handle it now. Couple 7 – Male

Couples reported that the way information had been delivered in the intervention was important: Because they were in a very simple, easy to understand format that I could pick up and read. . . If I had a problem with this, I could read that. If I had a problem with diet I could read that. Couple 7 – Male . . . sometimes something came up while we were talking and then [facilitator] would refer to them [information sheets]. You could come back and refer to it and look it up. Couple 8 – Partner

Data from the process evaluation questionnaires further corroborates this theme. The majority of participants responded that they found the information materials and the additional information sources (i.e. Macmillian booklets) ‘very useful’ (n = 15 and n = 13 respectively). With regard to the amount and level of information again most participants found the information had been geared ‘just

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Factors influencing implementation of CONNECT Role of facilitator All couples praised the expertise of the facilitator (professional counsellor) and co-facilitator (researcher and RN) in being able to successfully deliver the intervention. The key role of the facilitator was seen by participants as being able to extract key messages from group discussions and in validating the input of participants whereas the co-facilitator was viewed as having more of a practical role: I also found it exceptionally useful just for [facilitator] to go over things that other people had experienced in a sense. He was the certification or validation of things developing, things that you were still experiencing. Couple 3 – Male

There was the perception that the gender of the facilitator was not as important as their personal traits and expertise developed from having dealt with men with prostate cancer: If you feel that they have that particular expertise and I don’t mean in counselling, I’m sure they have to have that but they have to be

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The role of the facilitator was also emphasized in the findings from the process evaluation questionnaire with most participants feeling they had received ‘a lot’ (n = 15) or ‘enough’ (n = 1) support from the facilitator.

tically significant concern. In general, most of the participants had not sought any outside assistance for sexual dysfunction: I knew it was coming but it has hit me harder than I thought mentally. I know I’m sixty-six; we aren’t rampant sexually, but at the end of the day all of a sudden it’s not happening anymore and your libido is out the window. Couple 9 – Male

Group size and dynamics CONNECT group sessions were described as ‘open’, ‘honest’ and ‘supportive’ and participants clearly felt these characteristics significantly impacted the success of the intervention: Well a lot of people feel that they can’t open up in front of strangers. I mean I would be one of them, but I found that it was easy to do so with the group we were with. Couple 4 – Partner

However, there was awareness that certain characteristics could negatively impact the intervention. Intervention groups had been ran with 3-4 couples per group. The general perception of couples was that the size of these groups enabled good participation, although one individual had felt intimidated by the small numbers: The maximum would be about five but I would think that would be because the smaller group seemed to get saying everything you wanted to say and I think everybody seemed to be the same. Couple 1 – Male

Improvement of prostate cancer psychosocial support For many participants engaging in the intervention was the first opportunity they had had to express (in a therapeutic setting) how prostate cancer had impacted on their daily lives. In general, it appeared that they had gained support with regard to a range of issues they were experiencing. However, with regard to sexual dysfunction, there were varying degrees of satisfaction. Issue of sexual dysfunction There were contrasting opinions in the theme of sexual dysfunction. Several participants described how they had come to accept this symptom, because they felt it was less important given their older age. However, others including one of the oldest participants felt sexual dysfunction were a statis-

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Some respondents stated how there had been a frank and open discussion on sexual issues in the intervention group session and this had been very informative. Unfortunately, for others the issue of sexual dysfunction did not appear to have been successfully dealt with: Well there wasn’t so much talk about the erectile dysfunction, but I think it is one of the main things that should be discussed because it affects not only yourself but it affects your partner. Couple 2 – Male

Role of partners and barriers to engaging them Emerging strongly from the interviews was the sense that partners perceived themselves as having a more passive role in the intervention. Indeed, the marked absence from the interview data of any discussion from partners on themselves, their needs, or what they gained from CONNECT appeared to indicate the perception that the intervention was focused on the male participants: Well I wasn’t the patient, I was sort of there with my husband, but I did enjoy them. Couple 2 – Partner I think in our group I think the women really just listened to what was actually going on. I don’t think we had a great input in to it. Couple 6 – Partner

In contrast, it seemed the men viewed their partners as having a key role in initiating and facilitating group discussion which they achieved by highlighting the problems/ issues experienced by their husbands. It was acknowledged that partners could benefit from their own specific group session: I noticed that a lot of the stuff that was going onto the table was put on gently by women about what was wrong with their husbands that the husbands themselves may never have put on. . .. But

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JAN: ORIGINAL RESEARCH: EMPIRICAL RESEARCH – QUALITATIVE I certainly think the women may well get an awful lot out of their own session and as you say, they are more likely to disclose and support each other. Couple 3 – Male

Delivery of CONNECT The participants valued the group activity and many stated how they looked forward each week to the next session. However, they rated the telephone sessions as less important. The participants believed them to be of limited value and ‘impersonal’ in nature: I think it could have done without the telephone. I much prefer, but I’m not a telephone person, I would much prefer to drive somewhere and meet up with somebody and have a chat. I would say no to the telephone. Couple 8 – Partner

In the process evaluation questionnaires, the majority of participants said they felt the telephone sessions had been ‘very useful’ (n = 9) or ‘useful’ (n = 6) with only one participant rating the telephone sessions as ‘not useful’. A possible explanation for these conflicting findings is that participants were rating the telephone sessions as potentially very useful for all participants rather than indicating their particular benefit to themselves. There was a recognition that telephone sessions may be of value to individuals who were likely to hold back in a group scenario:

Prostate CONNECT

Couple 8 – Male

Other participants suggested that earlier delivery would have been more beneficial and one participant also highlighted that tailoring the intervention to the phases of illness would probably be most suitable: I think the general consensus was that this would have been better if it were a bit earlier. Certainly some sessions during treatment because that is probably when you are most uncertain. It is also when you are most subject to rumour. You would listen to anything, believe anything. Couple 3 – Male

There was more agreement on the ideal duration of CONNECT with most participants believing that the 9 week duration of the intervention had been sufficient. This was in agreement with the process evaluation data, which again showed that the majority of participants (n = 14) found the overall length of the programme to be ‘just right’. Despite this, approximately half of participants responded that they would have liked an additional session (n = 8 process evaluation data) with the preference being for any additional sessions to be of a group format. Some participants felt an extra session would have helped foster the social connections made in the group: I thought I would have liked to have gone back another once or twice because after the 3 weeks we had just started to gel and on the very last night very much so. Couple 5 – Partner

I think too the fact that somebody might want to say something at the joint meetings but didn’t want to say it in front of the others or felt intimidated so the telephone conversation might be ideal and you don’t see the person at the other end, you are talking into the telephone. Couple 8 – Male

Timing was flagged as another factor influencing the delivery of the intervention. Several participants felt the stage at which they were recruited was ideal as it had given them time after treatment to make comparisons between their pre-treatment and posttreatment level of functioning:

Intervention fidelity From the interviews, it emerged that certain elements of the intervention had been delivered differently than designed, predominantly target setting and the addition of extra components by the facilitators. These components were the tree/wheel of life (counselling tools to initiate conversation) and meditation. The process evaluation data also showed that approximately half of the participants had not chosen a target or concern (n = 11), nor had they chosen a shortterm goal or developed a plan to reach a short term goal (n = 8) as part of the intervention: A couple of wee things if asked if I would prefer left out would be,

Well you need a while for it to settle down to see how you are

at one stage there were these little diagrams or life studies [tree/

reacting after treatment finishes and in your own environment

wheel of life] and I didn’t really understand that all that well.

because you know what you normally do and able physically able

There was nothing really wrong with them and they wouldn’t put

to do and you have a comparison then, can you do what you did

me off going again but if I had a choice of having them there or

before with the same effort and all the rest of it.

not having them there. . .

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In summary, CONNECT appeared to provide couples with opportunities to share and validate their feelings and experiences regarding prostate cancer. The group discussion provided them with strategies on how best to manage their own lives and the information sheets that underpinned the discussion increased their understanding and enabled them to cope with their condition. Both the men and their partners reported that the information materials were informative but not overwhelming. In addition, some couples reported that the intervention facilitated better communication between them. Group sessions were highly valued and were described as ‘open’, ‘honest’ and ‘supportive’. Participants also described the expertise of facilitators and co-facilitator as exceptionally useful and valuable. There was less satisfaction with the way the issue of sexual dysfunction was dealt with in some groups and overall while partners reported satisfaction with the intervention, some reported that they perceived it to be for the men. There was general agreement about the content, timing, duration and frequency of the intervention.

Discussion Encouragingly, participants associated benefits with three major components of the intervention, namely: sharing and validation, gaining information and couple care. It is possible that identifying commonalities and obtaining assurances that they were not isolated, fostered in participants increased confidence to cope with the changes they were experiencing. This is substantiated by the increased confidence scores demonstrated by participants in the RCT data (McCaughan et al. 2014). Importantly, other research has found that having the confidence to cope with change is a powerful attribute in enabling men to deal effectively with the challenging side-effects of prostate cancer and its treatment and is a powerful aspect of resilience (Sharpley et al. 2013). Similarly, the improved understanding of prostate cancer and its associated symptoms that arose from the information provision component of the intervention appeared to be associated by male participants with them being better able to cope with their condition. It has been emphasized that information-based interventions with relatively simple designs and delivery requirements can significantly influence quality of life for prostate cancer survivors and their partners (Badger et al. 2011), as such the importance of this component should not be overlooked. 1878

There was an impression that more open communication between couples was provoked through their attendance at the group sessions. There is much evidence to support that fact that communication is related to dyadic adjustment, which in turn is associated with psychological outcomes (Wootten et al. 2007a, Badr & Carmack Taylor 2009). While the design of CONNECT as a couples intervention necessitates communication between partners, it may be advisable in future to include a more direct assessment of spousal communication to ascertain what both individuals expect or need from each other and their relationship. The success of all these intervention components were potentially influenced by the skills of the professional facilitating the group sessions and also the relatively small number of participants per group and the open and honest nature of the dialogue. These traits enabled good rapport to be established between participants and allowed sufficient time to address the issues of group members in the sessions. It could not be assumed that similar psychosocial interventions delivered by non-professionals or in larger groups would result in similar impact for participants. In contrast, three key issues were detected from this qualitative exploration which may have negatively impacted the success of the intervention. They are, the topic of sexual dysfunction, the role of partners in CONNECT and intervention fidelity. Unfortunately it appeared that some participants who had identified sexual dysfunction as a statistically significant issue did not believe the topic had been addressed sufficiently during their participation in the intervention. Several psychosocial interventions have been developed which focus solely on addressing sexual dysfunction for men with prostate cancer (Brotto et al. 2010, Siddons et al. 2013) and it could be assumed that these interventions would be more successful in addressing participants’ needs. However, couple-based interventions like CONNECT have the potential to tackle sexual dysfunction for both men and their partners who are also impacted by such symptoms (Badr & Carmack Taylor 2009). In addition, taking a more holistic approach to psychosocial support may provide the opportunity to engage individuals who are unlikely to attend an intervention that only focuses on sexual dysfunction as men may not feel comfortable requesting information or assistance for managing sexual dysfunction (Wootten et al. 2007a). Despite the perception of prostate cancer as a couples’ cancer, partners appeared to take on a more supportive role towards the men during their engagement in the intervention with few dwelling on their own difficulties a finding consistent with other qualitative work in the area (Couper et al. 2006, Bottorff et al. 2008, Nanton et al. 2010, Street et al. © 2015 John Wiley & Sons Ltd

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2010, Tanner et al. 2011, Ervik et al. 2013). The suggestion by some of the participants in this study that a split session should be introduced into the intervention indicates that there was an appreciation that partners needed and could achieve more support from their own specific session than had been realized in the current format of the intervention. Prior work comparing men and women’s support groups has found that these groups function quite differently with the men’s group orientated more around information provision and the women’s around social support (Bell et al. 2010). These differences highlight a potential difference in coping strategies that may need to be facilitated in the intervention. The fidelity with which the intervention was delivered was put under focus due to the fact that several participants had issues with additional counselling tools that had been integrated into the intervention by the professional facilitators. Queries over the value of telephone sessions and the success of the goal setting component were also emphasised. In future evaluations, it will be necessary to determine the fidelity with which the intervention was delivered to establish which components of the intervention are associated with most benefit and for whom. This should enable further refinements to the intervention which will likely influence its success (Preyde & Burnham 2011). Timing of delivery was a factor influencing participants’ experience of the intervention. Certain key milestones have been identified, where it is common for men to lose a sense of control when physical symptoms have not been resolved, for example, 1 year posttreatment (Sharpley et al. 2013) and it may be pertinent to evaluate the CONNECT intervention delivered at these different stages. However, residual symptoms of prostate cancer have been shown to continue up to 4 years post-treatment (Wootten et al. 2007b), therefore, it needs to be determined if CONNECT is appropriate across this continuum.

Limitations Although there had been no deliberate attempt to recruit or exclude participants from ethnic minorities in this study, there was a lack of diversity in participants in relation to ethnicity. In Northern Ireland where this study was conducted 98
2% of the population is white, therefore the demographics do reflect the local population. However, this may be a factor that could limit transferability of findings.

but also the complexity of providing psychosocial support to these individuals. Encouragingly, CONNECT showed promise as an intervention to promote psychosocial support to prostate cancer survivors and their partners through key components identified as sharing and validation and information provision. These findings show that although there were areas that could be further improved, this psychosocial intervention was valued by the participants. The insight gain from this qualitative exploration can be used to make the necessary changes before the intervention can be tested in a large randomized controlled trial. Overall, these findings serve to strengthen the emerging body of qualitative work in this area which will hopefully influence the provision of satisfactory psychosocial support to men with prostate cancer and their partners.

Acknowledgements The authors would like to express their grateful thanks to the men and their partners who consented to participate in our research and to the counsellors (from Cancer Focus) who were so skilful in delivering the intervention. We would like to convey our gratitude to Professor Laurel Northouse and Ms. Ann Schafenacker from the University of Michigan, USA, for their generous help and advice. We would also like to thank all the staff at the Cancer Centre, Belfast City Hospital for their support in facilitating this research.

Funding Funding for this study was granted on September 2009 by Cancer Focus Northern Ireland.

Conflict of interest No Conflict of interest has been declared by the authors.

Author contributions All authors have agreed on the final version and meet at least one of the following criteria [recommended by the ICMJE (http://www.icmje.org/ethical_1author.html)]:

• Conclusion This qualitative exploration highlights not only the complex nature of prostate cancer for men and their partners © 2015 John Wiley & Sons Ltd

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•

substantial contributions to conception and design, acquisition of data, or analysis and interpretation of data; drafting the article or revising it critically for important intellectual content. 1879

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