Emotional support versus informational support

In describing the functions of self-management support activities, studies commonly presented emotional support as distinct from informational support and considered the relative importance of each, particularly when drawing gender comparisons. Several studies with mixed-gender samples stated that men living with LTCs had a preference for informational support, while women preferred emotional support.^{102,103,107,113,122,128,136,216,218}

However, a number of investigations with male-only samples, spanning different types of LTCs, self-management support activities and methods of data collection, reported that men valued both information and emotional support.^{108,117,207,209,213} In one study, support groups were seen as offering both important informational support and an outlet to share feelings and fears.¹⁰⁸

Some authors recognised that, while many men value emotional support, they may feel less comfortable than women with reporting this as a motivation for using interventions, as this may transgress the enactment of dominant (hegemonic) masculine ideals of stoicism^{118,124–126,216} and ‘emotional self-sufficiency’.¹¹² Notably, some men did identify company and intimacy as the primary motivation for joining peer support groups,^123,217 including a preference of ‘connection over information’ (p. 626),²¹⁷ contrary to a supposedly common perception of men as ‘solitary and emotionally restricted’ (p. 619).²¹⁷

However, there was an indication that men and women valued informational and emotional types of support equally, but received (and offered) this in different (gendered) ways. For some men, receiving ‘factual’ information could offer reassurance, which also served to provide emotional support^109,113 and ‘reduce uncertainty and unpredictability of disease and to increase feelings of control’ (p. 87).²⁰⁸

Although emotional support in online postings in discussion board/internet support groups was not as immediately evident among men as in women, having ‘well-informed and balanced information’ could itself provide emotional support²¹² and the act of sharing information was associated with feeling ‘esteemed, valued and accepted’ (p. 100).¹³⁶ It could, therefore, be considered ‘intimate’ communication; this provides further confirmation that emotional support and informational support are inter-related for some men, possibly more so than in women. Emotional support may, however, be less visible and under-recognised in men’s interactions because of a disinclination to use overtly emotional or nurturing language:

Researchers need to be alert to instances of talk that represent strong emotional content, but which do not employ emotion words.

Second-order; p. 111²¹²

Other examples of men’s preferred forms of emotional support included encouragement that focused on strength, perseverance, and camaraderie,²¹² and support conveyed covertly through humour^207,209 or supportive silence.^207,208 Participant observation studies^{107,124–126,208,215} illustrated that separation of emotional and information support may be increased through group processes, rather than necessarily reflecting men’s true preferences (discussed further in Trusted environments). Some authors tended to persist with traditional perspectives about male preference for information and action in their analyses, rather than considering inter-relatedness or group processes.^103,107,122

Types of support and types of coping

Gender differences in the way support was provided and received were reported to be closely tied to gender differences in preferences for types of coping. Men were found to express preference for ‘action-oriented’, ‘activity-based’ support consistent with a male predilection for problem-focused coping.^126,207,216 This was often contrasted with a female preference for sharing personal experiences,^103,107,122 consistent with emotion-focused coping.

Some studies reported that men were keen to emphasise structure and activity as important and thus distance their participation in self-management support activities that were considered ‘feminine’,¹¹⁹ for example ‘touchy-feely’ discussions.²¹⁶ ‘Doing’ was seen as a way to regain control and reclaim a sense of identity, which had been disrupted through chronic illness.^115,203 This was commonly contrasted with ‘just talking’.^{111,112,115,117,209}

[D]oing the exercises we thought we were getting something out of it. Just having these talks [referring to group discussions], is not doing a lot of good.

First-order²⁰⁹

A sense of ‘doing’ could be particularly valued where the management of a condition was not viewed as ‘active’; for example, ‘watchful waiting’ in prostate cancer may be viewed as ‘nothing is being done’.²¹³

Sometimes the phrase ‘just talking’ distinguished talk that was considered ‘unproductive’ or ‘emotional masturbation’¹¹⁵ from talk that was perceived as constructive and purposeful, for example, through providing information, being problem-focused or ‘unburdening’ via emotional sharing.

In the two studies that focused on mental health^112,115 this distinction contrasted talking therapies (such as cognitive–behavioural therapy) that offer practical results with other forms of talking therapy. Emslie et al.¹¹⁵ found that men placed importance on getting practical results from talking therapies; this was in comparison with other forms of therapy, which were conceptualised as ‘just talking’. Similarly, several men in Cramer’s study¹¹² disliked the idea of counselling because they did not see the point of ‘talking about things that happened in the past and could not be changed’.

Preferences for focus and format

Across all types of support, men were commonly reported to have expressed preferences for structure and activity, which links with expressed preferences for problem-solving. Physical activity was consistently valued as offering a purpose and focus, sometimes linked to self-reported physical improvement^207,209,218 and feeling ‘healthier’ or energised.²¹³ Three studies reported that structuring meetings around talks by invited speakers, or embracing activities such as activism and lobbying by the group, could also provide a useful focus for the group.^{120–122,124–127}

Several studies reported that having structure and/or activities could offer opportunities for ‘opening up’ emotionally,^207,218 ‘regardless of [men’s] intentions’¹²² through approaching emotional issues or mental health ‘sideways on’.¹¹²

Men may be more comfortable, and environments considered more ‘trusted’, when self-management activities do not have emotional support as an explicit component, with emotional support instead arising as a ‘by-product’ of other shared activities. Aligned with this is the need to avoid transgressing culturally valued masculine ideals of independence, strength and control, which confirms the notion, expressed by some study authors, that support services can be made more acceptable to men if they ‘focus less on emotional expressiveness and more on instrumental changes and control’¹¹⁵ and are thereby reframed as a way of demonstrating these traditional masculine ‘traits’.¹¹¹

There was evidence that the need for using structure and activity to tackle emotional sharing ‘sideways on’ may vary between different groups of men. For example, differences were observed in the HIV/AIDS literature, in which all of the support groups for gay men with HIV/AIDS focused on emotional sharing, in contrast to some of the other male-only support groups.^{122,124–126,208} A focus on structure and activities did not seem necessary for these men to ‘open up’,^{108,110,123,127} although there was some suggestion that sharing certain types of feelings (e.g. fear and shame) may take longer for some men.¹²³

In contrast, it was deemed necessary for an intervention in South Africa for men with HIV to be strongly structured and to include educational components. This was reflective of culturally dominant notions of masculine identities and how men were not comfortable with emotional expression.²¹⁵ Similar intersections between culture and gender arose in the cancer literature, with Bell et al.¹⁰⁷ noting that a ‘tangible product’ such as education or coping skills may increase acceptability of support groups to men for whom ‘sharing’ is an ‘unfamiliar concept’.

Reciprocity and legitimising use

Seeking and accepting support could pose greater threats to identity for men who adhere to the masculine ideals of stoicism and self-sufficiency. In these cases, men may feel the need to ‘justify or legitimize their involvement’ as part of their performance of masculinity in the face of presumed hegemonic ideals.²¹⁶ This may be particularly true of group-based interventions or those with an active element of social support or self-revelation.

One example of men legitimising their involvement in such interventions was the way in which men ‘denied any agency’ in seeking support, instead portraying themselves as having ‘stumbled’ across support groups.²¹⁶ This is consistent with several other studies which reported an instrumental role for family or friends in men’s help seeking (rather than the man himself), for example in identifying a need for support, accompanying men when attending activities, or helping to access and navigate information.^{111,113,116,122,128,130,134,208}

Therefore, feelings of reciprocity and mutuality could be important for men when accessing interventions as a way to legitimise their involvement and lessen perceptions of need or vulnerability, as noted by Seymour-Smith:

Perhaps once men establish that their primary concern is to offer help to others it may became less problematic to admit to benefiting from the group themselves.

Second-order; p. 794²¹⁶

Similarly, participants in one study found it critical to both receive and exchange information;¹²⁷ this phenomenon was viewed in another study as a ‘transaction’²¹⁷ that involved ‘give and take’, not just receiving. Although this was not a male-only phenomenon,^107,120 there was some suggestion in the literature that men placed greater importance on reciprocity. Seymour-Smith²¹⁶ argued that the tendency to emphasise the benefit of others through one’s involvement was gendered, with women describing receiving help and men portraying themselves as offering help.

Authors’ analyses of online postings also reported that, although reciprocity is important for both genders, men may be more likely to engage in information sharing and women may be more likely to engage in personal or emotional sharing.¹³⁶

The role of reciprocity could vary at different stages in an individual’s use of self-management support. A number of support group studies (spanning various conditions) reported that information seeking was commonly given as a main reason for initial attendance whereas, later on, men said that they continued to attend to ‘give back’, both to other individuals (especially newcomers) and to the group as a whole, thereby strengthening a group’s sustainability.^107,125,216

This sense of ‘giving back’ could also extend beyond group members, to wider society, for example through lobbying involvement, through raising awareness or, in the case of patients accessing interventions as part of a research study, as a way of expressing ‘gratitude’ to care providers,^100,209 or being able to contribute to research to benefit future patients.²⁰⁹

Contributing to the group and to the experiences of others could be important for identity and self-esteem, and was reported to be of particular importance to men.²¹⁶ Contributions could occur informally through relationships within groups and could also occur through taking on leadership and committee membership roles.^112,122,125 Such business-like approaches were argued to be particularly valued by some men,¹²² perhaps reflecting the ways in which LTCs can challenge men’s identities as men, for example through loss of identity through loss of work.^118,119

However, the process of ‘giving back’ was not always positive. Some studies reported that men who had acquired leadership roles as lay volunteers felt that they were burdensome, and that such men risked ‘burnout’ particularly when faced with worsening health.^125,127

Changing needs

The purpose of interventions could change with evolving individual circumstances and ensuing changes in men’s needs and requirements for support.

The need for support and motivations for attending and continuing to use interventions was reported to vary according to men’s existing informal support and availability of significant others (e.g. partner, family, friends). Such observations were a stronger feature of the male-only literature than the gender comparison literature. Some men attributed choosing not to access support groups to their strong informal support network.^101,127

There was some evidence that emotional support might be particularly sought and valued where social isolation commonly accompanied LTCs, for example among men with mental health problems¹¹² and HIV/AIDS.^117,123,127 Sandstrom¹²⁷ provide a key illustration of this third-order construct, identifying that men with greater existing support still accessed groups but sought different support; that is, they primarily sought informational support and did not remain involved with the support groups for as long. Sandstrom¹²⁷ also found that existing support did not solely relate to people; it could also concern knowledge of the condition, how it is viewed in society and ease of access to information through other means, such as literature.

Other studies reported that attending a support group could allow men to seek emotional support outside their informal network for different reasons: not because of a lack of informal support but because, for example, they wished to ‘protect’ their significant others from being burdened or otherwise negatively affected by their concerns. We return to this later in relation to the concept ‘value of peers’ (see Value of peers).

Existing commitments were reported to act as potential barriers to accessing interventions and activities, for example being busy with other activities¹⁰¹ and work.¹¹⁸ Sometimes commitments intersected with men’s identities; for example, Gibbs’s analysis¹¹⁸ reported that, in the case of work, men identified themselves as providers and prioritised work over health; the type of employment (e.g. self-employment, farming) or, indeed, culture did not necessarily act as a barrier. Prioritising work over health was most relevant in the middle years, when men carry greatest obligations, compared with younger men (who may view accessing self-management support as a temporary disruption to work) and older men (who may not have the competing demands of work as they approach retirement, or are retired, or see declining health as an expected part of ageing).¹¹⁸

Similarly, Corboy et al.¹¹¹ concluded that, contrary to the perception that men in rural areas may struggle to access self-management support because of ‘logistical barriers’ (e.g. travel and availability of services), an issue of greater concern may be that coming from rural communities may influence their beliefs about engaging in specific types of activities, especially those involving emotional support. Consistent with this, Chambers et al.²¹⁰ reported anecdotally that men from rural regions were harder to recruit to their mindfulness-based intervention, which they thought could be linked to relatively ‘conservative views’ about meditation compared with their ‘urban counterparts’. Another potential issue faced by men from small communities (e.g. rural communities and gay communities) was increased concerns about privacy, anonymity and confidentiality that may pose particular barriers to emotional sharing in these circumstances.^111,117

Men’s needs frequently varied with changing health status or stage of condition, most often with worsening health or prognosis.^{111,112,116,117,127} Denial of a condition, or a reluctance to be labelled as someone with a disease, was a barrier to accessing interventions or support activities for some men,¹⁰¹ as expressed by one participant in Gibbs’s study:

I do not want to accept myself as a person with arthritis, and going along there would be taking a step down that road.

First-order; p. 296¹¹⁹

Once again, evident here were tensions between men’s perceived need to fulfil roles and obligations linked to their identity as a man, and acceptance of living with, and needing help to manage, a condition that may threaten that identity. Although this could initially be a barrier to accessing support, Gibbs¹¹⁹ reported that changing needs due to worsening health could over-ride this in the context of rheumatoid arthritis, when severe pain and restrictions made it impossible to sustain valued social identities and roles. Gibbs¹¹⁹ also argued that men may have multiple LTCs, each with individual needs and carrying implications for identity.

Across all LTCs it was acknowledged that, whereas initially someone may view a condition as controllable and seek information to ‘take on’ or ‘fight’ their condition, the same person may later want to focus on managing adjustment and seeking emotional support instead. In the context of peer-support groups, authors observed that it was, therefore, important to ensure that groups catered to the needs of longer-term members, as well as newcomers:^123,125,208

Participants saw the success of this group being due to the structure provided by the leader in arranging more experiences for older members than those that can be provided in open and unstructured crisis groups.

Second-order; p. 33¹²³

[I]n addition to meeting the information needs of newly diagnosed men, the group meetings needed to offer ‘new’ information to maintain the interest of long-term members, because their commitment to the group was often premised on continuing to learn, as well as ‘giving back’ to newly diagnosed men.

Second-order; p. 149¹²⁵

Key messages: need for purpose

• Men can experience tensions between a perceived need to fulfil valued social roles and obligations linked to their identity (especially those related to masculinities), and acceptance of living with and needing support to manage a condition that could potentially threaten that identity.
• Family or friends can be instrumental in legitimising a need and encouraging men’s involvement in self-management support.
• Structured, action-orientated support that leads to tangible results and does not transgress culturally valued masculine ideals of independence, strength and control may improve the acceptability of support interventions for men.
• Men value both informational support and emotional support, but may perceive, engage in and access these in gender-specific ways.
• Receiving and sharing information can provide men with both reassurance and emotional support, and may be viewed as more acceptable than ‘just talking’.
• Men’s needs and preferences for different types and functions of self-management support may vary with their changing health, although not necessarily in a linear fashion.

Ability to pitch at one’s own level

For some men, a trusted environment meant being able to set the pace and activity at a level where they felt comfortable, and allowed different types and amounts of involvement or contribution at different times. In studies where the intervention/support was focused around physical activity, authors highlighted the importance of matching the pace or intensity of exercise to individuals’ current physical health and limitations.^100,207

The option for varied involvement was also important for face-to-face group support and online forums, but for different reasons. One study of prostate cancer support groups noted the value men placed on the ability to listen without feeling an expectation to talk; members were ‘allowed’ to just listen:

Men who did not want to talk could listen without worrying about being put on the spot to say something, whereas others could comfortably share questions and comments from within the group.

Second-order; p. 564¹²⁶

Varying levels of contribution were also observed in analyses of online forums, where some men were noted to have ‘lurked’ rather than (or prior to) posting.^109,136,212 ‘Lurking’ may have been a necessary step for some men in the ‘opening up’ process, affording an opportunity to ‘participate without feeling the pressure to share their specific experience’ and allowing men who may not feel able to ask questions to gain some benefit from the interactions of those who are more active.¹⁰⁹ Authors also contended that ‘lurking’ may reflect men’s desire to learn the rules of talk before actively participating^136,209 in order to become ‘comfortable in knowing “how to” participate’;¹³⁶ this is discussed further in the ‘becoming an expert’ concept (see Becoming an expert).

Group dynamics and rules of talk

Some authors reported that, given its potential to transgress culturally dominant expectations that men should behave in a strong and stoical manner, any topic that was particularly emotive and/or required emotional expression could be considered ‘taboo’ by men.^126,208,215 This could be overcome by the anonymity afforded by online communities, which allowed some men to ‘open up’ to emotional expression and intimacy that would otherwise be considered (prohibitively) difficult in face-to-face interactions.¹⁰⁹

In face-to-face support groups, authors reported that group dynamics could work to either promote the discussion of taboo topics or stifle them. In prostate cancer support groups, for example, ‘rational and objective’ discussions on functionality rather than feelings legitimised a supportive and collective problem-solving group dynamic that encouraged men to ‘open up’ about potentially taboo topics, such as erectile dysfunction.¹²⁶ This way of talking also allowed men to ‘open up’ to different ways of thinking about activities not usually considered to fit with stereotypical masculine roles, such as cooking or abstaining from alcohol consumption.^126,215

Groups where participants perceived a shared experience and shared understanding with others (both face to face and online) offered permission for men to discuss taboos such as sexual functioning:

being chauvinistic males we tend to keep it to ourselves . . . But when I’m amongst people like this I feel safe and confident.

First-order; p. 4²⁰⁹

Such dynamics also provided permission to show emotions freely,²⁰⁷ facilitating circumstances in which men could ‘say anything you want’²¹⁷ and ‘feel free to rant’.¹³⁶ However, some studies reported that men felt that there should be limits to this and that the talk should remain ‘constructive’ and ‘productive’, offering practical strategies rather than being dominated by members who want to ‘moan’.^111,127

Group dynamics could also work to stifle emotional expression, highlighted in Corboy’s suggestion that individual men’s lack of emotional sharing may in fact reflect ‘limited opportunity rather than unwillingness on the men’s behalf’ (p. 179).¹¹¹ Studies indicated that men’s inhibitions around emotional talk in peer support groups may reflect group dynamics rather than the wishes of all of the male attendees. Practices that were noted to discourage or ‘squelch’²⁰⁸ emotional talk and sharing included topic turning by facilitators²⁰⁸ or group members, with ‘conversation quickly mov[ing] towards “safer” topics’.¹⁰⁷ Thus, although a focus on problem-solving and the practical aspects of potentially emotive topics could represent a positive way to facilitate the discussion of potentially taboo topics among men,¹²⁶ it was also interpreted as a practice employed to avoid emotional talk and listening to underlying concerns and experiences:^208,215

Jim was visibly disturbed by the effect of the hormone on his body, but rather than address that concern, the group moved into a discussion of financial matters, an instrumental issue.

First-order; p. 93²⁰⁸

Avoidance of emotional topics was reported in some studies as consistent with men’s individual preferences.¹⁰³ Elsewhere, it appeared that such group processes may not meet all men’s needs²⁰⁸ and that some men needed to be ‘allowed’ to vent, particularly as part of psychological adjustment to their diagnosis.^108,117,127

Evident in a minority of study findings was the use of humour as a way to foster trust and allow greater ‘opening up’ among men, both as a way to address emotion (compared with ‘incidental’ use by women²¹²) and as a way to encourage camaraderie and a ‘male-trust culture’ in relation to physical activity.²⁰⁷ Conversely, however, three mixed-sex sample studies reported use of humour in women but not men.^114,120,136

Our analysis found that peers were a key factor in establishing safety and trust, which we describe in further detail in the ‘value of peers’ concept later in this chapter (see Value of peers). Regardless of the nature of relationships between those accessing face-to-face group interventions, it was evident that those attending a group needed to demonstrate certain core values, such as respect and a willingness to listen, that were critical for ensuring a ‘trusted environment’:

even though I didn’t feel a great affinity toward a lot of people we showed respect for each other, we listened.

First-order; p. 1190²⁰⁷

Sharing core values could be particularly important where men were facing health issues which they perceived to be stigmatised or stigmatising. For example, in the HIV/AIDS literature, men were seen to place a high value on other group members sharing in common both diagnosis and sexuality.¹²³

For some men, trusted environments were quite clearly about male-only spaces,^207,209 but for others they were not. Some men taking part in physical activity did not want (female) partners to be present^207,209 whereas, in the context of cardiac rehabilitation services, some men found that female partner involvement could influence both access of support and implementation of lifestyle changes.^134,211 Thus, for some men, environments were made more trusted and accessible through inclusion of female ‘significant others’. For other men, the exclusion of female family and friends from self-management groups promoted greater trust, enabling men, for example, to speak without worrying about ‘negative consequences’ in their existing social networks.¹²⁷

Physical characteristics of the environment

There was some indication in the literature that men and women differed in their preferred size of support group, reflecting gender differences in preferred purpose and focus of self-management support activity. For example, Gray et al.¹²² found that women preferred smaller support groups, consistent with an emphasis on ‘intimacy and peer knowledge’, in contrast with a male emphasis on ‘information and advocacy’, better served by larger support groups. Kendall¹²³ reported men’s need for HIV/AIDS support groups to be small enough for all to talk and be heard. Additionally, emotional sharing and intimacy was noted to require familiarity,²⁰⁸ which was seen to be facilitated by small, closed groups, given the ‘lack of structure and consistency of group membership’ in large, open groups.¹²³

Some men reported not feeling comfortable in group situations; this was occasionally linked to dynamics within the group such as concerns over the ‘trustworthiness’ of group members, whereas for others it was about preferring one-to-one interactions and feeling listened to.¹²⁷

Contrasting views were reported among men on the extent to which security and trust were offered by face-to-face support compared with online support. Among the men in Broom’s¹⁰⁹ study, some favoured online support because it offered ‘anonymity’ and was ‘potentially liberating’ and ‘disembodying’, whereas others felt distrust in such situations and were wary of the ‘potential for deception and misinformation’ in anonymous online settings,¹⁰⁹ feeling people’s information and experiences would be ‘hard to verify’.¹¹⁴ Others felt potential mistrust of information about their condition and its management; this was true regardless of setting, which may reflect a distrust of information provided by non-professionals (discussed in Becoming an expert) rather than characteristics of the setting per se.

Issues of anonymity were also raised in relation to health professionals, with some men (and women) with mental health needs preferring to ‘preserv[e] a degree of anonymity’ rather than receive support from, for example, their general practitioner.¹¹⁵ Despite online forums usually being ‘publicly visible’, men (and women) viewed them as ‘relatively private places for the discussion of intimate personal information’.¹²⁸ As discussed earlier in this chapter, online support groups can sometimes offer fewer barriers for group members to discuss taboo subjects about expressing their experiences than face-to-face groups¹³⁶ by freeing men from the constraints of adhering to culturally dominant ideals and norms of masculine behaviour, such as expectations to be ‘strong, well, tough, inexpressive’.¹¹⁹

There was limited evidence on the importance of the characteristics of the physical environment in contributing to building a trusted environment for self-management support; evidence was largely confined to studies reporting influences on men’s engagement in physical activity. In Bourke et al.’s²⁰⁹ study, men who participated in a lifestyle intervention valued doing physical activity in a university rehabilitation suite, and the location of the intervention within this setting helped to motivate the men to ‘get stuck in’. Their discussion of the use of this setting also highlighted their lack of confidence in community exercise facilities and the ability for these facilities to accommodate their specific needs. Similarly, Galdas et al.²¹¹ found that men attending cardiac rehabilitation valued being supervised and monitored by health-care specialists when exercising; this ensured they ‘felt safe’, whereas self-led exercise was accompanied by ‘fragility and uncertainty’. With the exception of Kronenwetter et al.,²¹³ who questioned if the ‘community itself (vs traditional health care setting)’ (which was not described in further detail) ‘allows the staff to connect to participants in a more meaningful way’ (p. 106), authors did not disentangle the role of supervision from other aspects of the setting.

Both peer and professional facilitators and supervisors of support activities were seen to play a crucial role in nurturing a ‘trusted environment’. Dissatisfaction with health-care providers was widely reported among both men and women. Some studies highlighted the key role of HCPs as enablers of or barriers to interventions – often regarded as ‘gatekeepers’ – and the need for interventions to be more considerate of points of access. The role of health-care providers could vary with condition and was particularly important in relation to mental health.^112,115 In particular, some men found it critical to establish a one-to-one relationship with the facilitator before attending depression and/or anxiety support groups, and there was a clear sense that it was important for health-care providers to consider carefully how they approached men: for example, not placing the onus on men to make changes.¹¹²

Several ‘lifestyle’ interventions highlighted the importance of facilitators for motivating patients, supervising activities where men lacked confidence (especially physical activity) and maintaining behaviour change.^{134,207,213,218} These all emphasised the need for both professional facilitators and peer support:

[professional staff] had an important role . . . in maintaining and changing physical activity . . . However, . . . getting together with people who share similar circumstances seems vital.

Second-order; p. 518²¹⁸

The staff was overwhelmingly mentioned as positive, helpful, and extremely supportive. . . . the peer community was the most highly valued part.

Second-order; p. 106²¹³

Professional staff ensured security and they motivated the men.

Second-order; p. 533²⁰⁷

Facilitators of groups were key in fostering group dynamics and, as discussed earlier, this could lead to the promotion or stifling of emotional expressiveness. In relation to their ‘lifestyle’ intervention, Adamsen et al. reported the importance of a sympathetic and skilled facilitator to create the potential for establishing trusting relationships between group members and to provide a secure environment; they noted that the presence of a professional ‘allowed’ the men to speak about their personal situation.²⁰⁷

The extent to which facilitators promoted emotional sharing partly depended on their credentials and whether they were a peer or a professional. Observation of prostate cancer support groups, for example, reported that professional facilitators (particularly those who were health professionals) may be a barrier to emotional sharing and voicing of certain views between men.²⁰⁸ Similarly, in the context of online discussion boards, a ‘professional presence’ may inhibit members from ‘sharing their own expertise’.²¹² The extent to which facilitators were viewed as impartial and having no agenda of their own is discussed further in Becoming an expert.

In some of the studies, men expressed views on the attributes they valued in facilitators or HCPs. Some men valued warm, supportive facilitators¹²³ whereas others expressed the need for organised leaders who would bring in new members.¹²⁵ The capacity of the facilitator to meet the needs of all members was often seen to be important, whether through provision of new information to maintain client interest¹²⁵ or through ensuring that the group was not monopolised by particular individuals.^123,127 In comparing experiences of general practitioner support for mental health, Emslie et al.¹¹⁵ noted that, whereas women valued ‘listening skills’ in health professionals, men valued ‘skills which helped them to talk’.

There was little evidence regarding men’s preferences for the sociodemographic characteristics (i.e. age, gender or ethnicity) of facilitators and care providers, although one study focusing on mental health reported that some men may find it easier to talk to male care providers.¹¹² Some men were said to favour facilitators who were themselves peers;^112,125 however, this could place high demands on lay volunteers, as discussed earlier, in Need for purpose.

Key messages: trusted environments

• Support interventions can be made more accessible and acceptable to men if they are offered in a safe, private, trusted space/environment.
• Sociocultural expectations of men to behave in a strong and stoical manner can inhibit emotional expression and stifle the discussion of ‘taboo’ topics that might be challenging to masculine identities.
• Allowing participants the ability to set the pace, activity and level of involvement/contribution may be necessary to allow some men to participate in interventions without feeling inadequate about their bodies or their physical capabilities or feeling pressure to share their specific experience.
• Group dynamics in face-to-face support groups can work to either support or stifle emotional expression. Facilitators of support groups are key to fostering group dynamics.
• Environments can be made more trusted and accessible for some men through inclusion of female partners; for others, a male-only environment may promote trust by enabling men to speak without ‘negative consequences’.
• The ‘trusted environments’ afforded by online communities, and face-to-face groups where participants perceive a shared experience and understanding, can help men to transcend cultural expectations of masculinity and ‘open up’ emotionally.

Who is a peer?

The ways in which men were able to identify with ‘peers’ with similar health conditions whom they encountered in self-management support activities were complex. Within face-to-face groups there appeared to be a delicate balance between other participants appearing sufficiently heterogeneous so that all would feel welcome, ‘eligible’ and included, but also sufficiently homogeneous (i.e. ‘similar enough’) that men felt at least some shared sense of identify with other group members.

Through analysis of the data presented in the studies, it appeared that differences in some social characteristics (such as age, ethnicity, class/economic background) were often transcended by ‘trumping’ commonalities, in particular the shared experience of a particular health issue and gender.^113,207 In these cases, perceptions of shared experiences and understandings offered ‘connection’²¹⁷ and could help to foster a ‘trusted environment’ that allowed men to ‘open up’ and engage in emotional sharing. An assumed empathy based on experiences that were sufficiently similar, or ‘roughly in the same boat’,²¹⁰ appeared to allow men a ‘break’ from their illness (and disrupted identities) as they felt able to fall back on a degree of ‘intuition’ thanks to ‘truly understanding’¹¹⁷ how others felt. This meant that, for some men, less needed to be explicitly voiced,^110,207 as one participant in Adamsen et al.’s study explained:

We don’t need to convolute things by asking how someone feels today because we can see it . . . We understand just when to laugh and sometimes when we should be quiet.

First-order; p. 531²⁰⁷

For some men, however, the range in the severity of condition among people in the group meant that they did not identify with each other or, indeed, did not wish to identify with each other, as discussed at the beginning of this section. In contrast, other men reported welcoming a range of diagnoses and severity in a group setting:^103,210,217

their problems were more common than they had realised and this helped to reduce feelings of isolation, uniqueness and the belief that people who did not have multiple sclerosis would not be able to understand their condition.

Second-order; p. 1173¹⁰³

Some studies suggested that men valued attending support interventions with those who were peers across ‘several layers’. In this way, seeing others as ‘sufficiently like me’ might require having multiple things in common, something beyond simply a shared health issue. This was particularly evident in the HIV/AIDS literature on support groups focused on emotional sharing, in which several studies reported that gay men valued the fact that group members had both diagnosis and sexuality in common.¹¹⁰ An analysis of this issue across other health conditions and issues is somewhat limited, however, as sexuality was rarely considered outside the HIV/AIDS literature, although Gooden and Winefield²¹² did report that online postings (in relation to prostate and breast cancer) were ‘limited to heterosexual references’, potentially discouraging the involvement of others.

There was some evidence of a lack of identification with ‘peers’ among both men and women. For example, one study reported that men found it frustrating and disappointing to be surrounded by individuals who had the same health condition as them yet whom they did not view to be positive role models, either because of other differences in broader social values or because of their outlook concerning the condition.¹²⁷ This study also reported that men who had already undergone some process of adjustment to their illness found that interacting with those in ‘crisis’, who had not (yet) ‘come to terms’ with their diagnosis, could lead to negative interactions. This was voiced explicitly by one participant in Sandstrom’s¹²⁷ study, who described feeling as though he was ‘walking into a wake’ and not wanting to feel worse for having attended the group.

Men attending a testicular cancer workshop²¹¹ also reported needing more in common than simply the same condition; in this case, men identified preferences for survivor stories that involved others of similar ages and socioeconomic/employment/cultural backgrounds (‘typical lad or bloke’ rather than ‘professionals’; not ‘too American’).

In contrast to the majority of the literature, which automatically positioned other men with LTCs as peers, there were two examples where men preferred to draw on support from those more closely known to them, describing others with the same condition as ‘strangers’.^101,211 As argued by Galdas et al., such findings highlight the need to consider other influences, such as ‘the demands of cultural customs and societal bonds’ that may limit accessibility of self-management interventions ‘premised on individualist or spousal-centred models’ (p. 262).²¹¹

Sense of community

For many men, the ‘peers’ they encountered through self-management support (either face to face or online) offered a welcome opportunity to experience a sense of belonging and of normality.^{112,113,126,136,212} Such validation that, as men with a chronic health condition, they could regain a male ‘insider’ rather than ‘outsider’ status appeared to be important across several different health conditions studied (e.g. cardiac conditions,¹³⁴ prostate cancer¹³⁰), although there is some suggestion from the literature reviewed that this may be particularly important for men living with more ‘stigmatised’ conditions, such as mental health problems and HIV/AIDS:^{110,112,123,129}

[the diagnosis was] such an emotional thing that I needed to be with people who had gone through this.

First-order; p. 185¹³⁰

Seeing other people are here with the same problems makes me feel a little better, not so strange.

First-order; p. 236¹³⁴

The online friendships . . . where the patients shared their symptom stories, served to validate a patient’s experience and lead them to the realization that they were not alone, which fostered a positive attitude toward treatment completion and hope for the future.

Second-order; p. 392¹¹³

Other authors described self-management groups as ‘communities’. Kendall¹²³ suggested HIV/AIDS support groups were ‘spiritually bound’ communities where men shared not only common language but also ideals and values. Elsewhere, the distinction between ‘group’ and ‘community’ appeared more linked to whether contact between peers was limited to planned activities or extended beyond these. Gooden and Winefield’s²¹² analysis of online postings suggested that both men and women wanted to extend their contact with other contributors beyond the online forums, whereas Sullivan¹³⁶ reported that this phenomenon was more common among female participants. Consistent with this, studies on face-to-face support groups reported that some men ‘were quick to distance themselves’ from others accessing interventions and preferred to focus on information exchange rather than ‘friendship or camaraderie’¹²⁶ and that women more commonly wanted ‘buddies’ outside the formal group.¹⁰⁷ Other studies suggested that men valued ‘connections’ and ‘intimacy’ with others¹²³ and ‘true friendships’ which men saw as extending beyond scheduled support group meetings (p. 625).²¹⁷ There was also evidence of some men feeling rejected when contact did not occur outside such meetings, or dissatisfaction when relationships felt superficial. Gray et al.,¹²¹ for example, noted that ‘much of the felt intimacy was left unsaid’ and there was ‘little deliberate attention paid to facilitating men making personal connections’.

For some men, the involvement of family and friends could nurture a community that extended beyond meetings.²¹³ In contrast, observations of prostate cancer support groups²⁰⁸ found that contact did not continue beyond prescribed meetings, because of the presence of partners at these groups or the older age of group members, who may have had less flexibility around transport. Opportunities to develop relationships beyond group meetings may therefore be affected by material barriers or existing informal support.

Information, education and motivation

The value men placed on opportunities to learn from their peers was evident across the qualitative literature. Often, men (and women) viewed peers as experts and ‘credible sources’ from which to garner information and learn about self-management. There was evidence that some men considered learning from peers to be more acceptable than learning from health professionals because they perceived ‘power’ to be more equal in their relationships with their peers.¹¹⁷ One participant in Vanable et al.’s study described being taught by health professionals as sometimes feeling like being ‘preached at’.¹²⁹

Learning from peers could occur through explicit exchange of information (e.g. ‘tips’ and strategies²¹⁸) via face-to-face or online interaction, but also through reading accounts of ‘survivor stories’.^116,214 The majority of group ‘lifestyle’ interventions noted the importance of peers and group identity for encouraging the adoption of increased physical activity, which men and study authors attributed to mutual motivation that developed through a sense of team spirit, camaraderie, social commitment and obligation;^{134,207,209,218} such processes may be seen as congruous with masculine identities.

Similar views were expressed by some men in relation to group-based psychological interventions:

I felt part of a . . . team, and really wanted to be there for other people no matter what condition I was in.

First-order; p. 1190²¹⁰

A role-modelling approach to learning was adopted in one self-management intervention in rural South Africa, which aimed to encourage men with HIV to adopt health behaviours that were widely seen to challenge sociocultural notions of masculinity, such as using condoms, eating healthy food, having one sexual partner and abstaining from alcohol.²¹⁵ However, learning from peers was not limited to conditions or their management. Examples in the literature showed possibilities for learning about well-being more generally (e.g. ‘mixing health and illness messages’¹²⁶), gaining a sense of community^123,213 and developing ‘social skills’ that ‘foster the development of relationships’¹¹⁷ through processes such as becoming more ‘self-aware’ by having one’s views challenged by other group members.¹²³

The presence of women and significant others

Findings varied in relation to the involvement in interventions of men’s ‘significant others’, and whether or not they were considered peers. Some studies reported on self-management support activities which actively involved men’s partners. There was some suggestion that wanting family and friends involved in support activities may vary with condition and with activity/intervention type. For example, prostate cancer was often described as a ‘couple’s disease’ and studies of face-to-face support groups and online discussion forums described widespread participation of female partners.^109,122,136 Internet forums used by men with prostate cancer also had a presence of family members^136,212 and some prostate cancer support groups were attended by family members.²⁰⁸ In contrast, involvement of partners was not reported in any of the HIV/AIDS support groups.^{108,110,123,127}

Men in one study spoke of the value they placed on opportunities to hear the views and experiences of other patients’ friends and family at support groups.²¹⁷ Significant others were said to be welcomed by men at some ‘lifestyle’ interventions^134,213 but not others.^207,209 Valuing separation from friends and family for engaging in interventions to promote physical activity was also found in Ferrand et al.’s study of men and women with type 2 diabetes:

Participants described their personal histories with familial difficulties and their depression related to the disease, and indicated that it was important to them to exercise in a supportive context. They reported developing competence, autonomy and a relatedness in the patient association.

Second-order; p. 514²¹⁸

Some men (and women) distinguished the value of the support provided through taking part in an intervention or group interaction with ‘peers’ encountering the same health issues, as distinct from the support they valued from friends and family.^{108,121,126,127,217} As mentioned earlier, one underlying reason cited for preferring this separation was the opportunity to be able to ‘say anything’²¹⁷ without fear of ramifications and the related desire to protect friends and family from the ‘burden’ of their own condition and associated needs:

you have also created an enormous burden on others . . . I belong to the support group, because . . . we all understand each other. There are a few people there who are very important to me. They’re not friends. . . . there’s that distance. We just get together to unburden.

First-order; p. 200¹⁰⁸

Space away from friends and family appeared to be particularly important where participants experienced worsening health or were struggling with emotional impact. Importantly, such separation of support meant that men did not need to ‘rely’ on friends and family for emotional support, which helped to ‘diminish feelings of dependency’ within these relationships.¹²⁷

The importance of being with other men for physical activity-based interventions was evident in some studies^207,209 but not others.²¹⁸ The apparent need for ‘men’s spaces’^207,209 was sometimes conflated with a need for creating spaces away from partners and other family, rather than away from female patients per se. Indeed, one study which reported on women’s expressed preferences for groups attended by only other women clarified that this meant ‘women with the same condition’; that is, groups which excluded HCPs, friends and family, to avoid ‘compromis[ing] the special quality of women’s intimacy with women’ or ‘divert[ing]’ attention to family.¹²²

In studies that reported questioning men directly about their preferences for male-only versus mixed-sex interventions, a preference for mixed-sex groups was sometimes expressed. For example, some men with mental health problems suggested that mixed-sex groups would encourage more talking, and more emotional talking in particular.¹¹² Similarly, men with a range of different cancers felt that mixed-sex groups might increase more ‘free flowing’ and ‘higher quality’ discussion.²¹⁷ These comments from men directly contrasted with the views of some facilitators of mental health support groups, who felt that mixed groups could lead to avoidance of certain topics (e.g. those related to sexual functioning) and to different dynamics.¹¹² Bell et al., having observed mixed-sex cancer support groups, also noted the possibility that mixed-sex groups may not meet the gender-specific needs of both men and women:

[mixed-sex groups] may flatten the ‘gendered’ dimensions of typical support groups . . . there was less emotional sharing than might appeal to women, and less formal provision of information than might appeal to men.

Second-order; p. 443¹⁰⁷

Key messages: value of peers

• Interaction, either face-to-face or online, with peers who have a shared illness experience can offer a sense of belonging, connectedness and normality for men living with a LTC; but it can also have potentially negative implications for self-identity.
• In some cases, especially among men living with LTCs perceived to be ‘stigmatised’, identifying others as peers might require having multiple things in common.
• Men can view peers as ‘credible sources’ from which to learn about self-management through interaction, information exchange or social comparison.
• Peers and group identity can encourage and motivate behaviour through a sense of camaraderie and social commitment.
• Attendance of women and significant others at self-management support can have both positive and negative impacts on men’s perception of acceptability and accessibility; this may vary with condition and with activity/intervention type.

Health literacy and the desire for information

Studies of face-to-face and online support groups, and studies of men’s use of information, consistently illustrated that, contrary to prevailing assumptions about gender differences in health behaviour, men placed great value on health information and education.^{102,103,107,109,113,116,122,124,126,128,136,208,212,214}

On the basis of observations of prostate cancer support groups, some authors commented on the frequent use of medical terminology and numerical information in health education.^124,208 This was interpreted by Oliffe et al.¹²⁴ as a way to foster group identity, whereas Sullivan¹³⁶ argued that such language was used by men to demonstrate knowledge and a hierarchy/superiority, consistent with the construction of dominant (hegemonic) masculinities. Similarly, analyses of online postings identified expectations placed on men to have high levels of health literacy, read key articles, use medical terminology and abbreviations, and provide personal history information in a digest format.^113,136,212 By contrast, women’s cancer forums did not contain detailed reports, instead using brief summaries of medical information.^128,136,212

Study authors proposed that the prevalent use of medical terminology in men’s online support forums may reflect the demographics of those men who chose to access this type of support, as well as the presence of health professionals in the forums studied.^46,136 Although the characteristics of the persons putting up online posts were not available for researchers analysing postings, Gooden and Winefield reported that the ‘quality of writing’ of men and women indicated ‘reasonably well educated and articulate’ users (p. 112)²¹² and Sullivan reported that online discussions may be likely to be of most benefit to ‘well-educated, analytically minded’ men (p. 98).¹³⁶

While it was evident throughout the literature that men had a desire for information and knowledge, overly complex or technical information could also act as a barrier to learning. Oliffe et al.’s study of prostate cancer support groups noted the importance of men being able to learn from their peers ‘in their own way’ and without feeling the threat of being derided for their lack of knowledge about specific health and illness issues, and observed instances where information was not fully accessible to men as a result of ‘complex content or the style and language’.¹²⁴ In the context of online discussion groups, Broom¹⁰⁹ suggested that individual ability to access and comprehend information could limit empowerment.

Studies of ‘lifestyle’ interventions also found that some men did not express preferences for technical information, but instead emphasised the need for accessible information, presented in ‘everyday language’.²¹⁴ Accessibility required that the information be tailored and contextualised, which the authors reported may be particularly important for younger men.^99,214 Other studies indicated that ‘contextualising’ information meant considering not only demographic characteristics that men could relate to, but also guidance on how to translate information into knowledge that could be integrated with daily life. For example, through analysing men’s comments, study authors noted the importance of strategies or ‘usable information’ on ‘the why’s and how you do it’²¹⁴ rather than standardised or general health messages that could be seen as lacking ‘respect for the individual and his context’.¹³⁵

An unfavourable aspect of knowledge and information that was notable in some study findings was the potential to provoke anxiety in men (and women) and overwhelm them.¹²⁸ As a result, some men described setting boundaries around what they wanted to know in order to maintain their coping strategies.¹¹⁶ Evans et al. distinguished between ‘proactive seekers’ and ‘passive recipients’ of information and argued that this might reflect different stages and experiences of illness, rather than an underlying personality style.¹¹⁶ Significant others were also described as playing a key role for some men in obtaining information, and may have helped to protect them from feeling overwhelmed by information; for example, some studies reported that men used ‘lay referral networks’ or ‘Internet-savvy’ friends and family, often their wife or daughter, to navigate and ‘filter’ information resources.^113,116,128 It is of note that, among the studies that paid attention to gender and the use of internet-based resources, gender differences were not observed regarding the use of family and friends to overcome technological barriers.^113,116,128

Who is expert?

Men living with a LTC varied in whom they considered to be an ‘expert’. As described earlier, peers were identified in several studies as trusted sources of information that could provide highly valued advice thanks to shared understanding.^{112,117,129,218} However, caution was evident about the reliability of information from lay patients, rather than ‘qualified’ professionals,¹¹¹ with the suggestion that ‘qualified’ professionals may be more appropriate to provide factual information, whereas support could be better offered by peers, as Wallace and Storms¹²⁹ concluded:

Participants clearly indicated that although educational needs may be filled by enhanced education within urology practices, support needs must be filled by prostate cancer patients and survivors, not health care professionals.

Second-order; p. 186¹³⁰

Preferences for information sources were sometimes interpreted by study authors as being linked to gender differences in preferences for particular types of information, with a suggestion in one study for a male preference for medical information and education and a female preference for personal experience,¹⁰⁷ although this was contradicted in other studies, which found that both types of information were valued highly by men and women.^124,216

The findings of a number of studies reported that men often evolved into experts and providers of information. Linked to the ‘need for purpose’ concept, the opportunity for ‘reciprocity’, ‘mutuality’ and ‘giving back’^{107,126,127,209,217} through providing information was frequently positioned as a key motivator for (ongoing) use of group support and ‘lifestyle’ interventions, with associated benefits for self-identity and self-esteem.

Similarly, the literature on information and online support illustrated how men sought information from peers in order to become experts themselves;^109,113,136 using peer counsellors was said to offer similar benefits.¹¹⁷ Authors argued that becoming equipped with information could also be about processing and accepting past treatment decisions (including those made by others), rather than necessarily influencing future ability for shared decision-making.^109,113 Alongside face-to-face information sharing, some men sought other patients’ stories of their personal experiences through media and books as well as via internet resources, to navigate, for example, complementary and alternative medicine information.¹¹⁶

Studies of online and information provision interventions reported that men were often ‘selective’ about the sources of evidence they used,¹¹³ considering and weighing up the utility of varying ‘forms of evidence’, including personal stories and more factual/medical information.¹¹⁶ Information was sometimes validated by comparing sources, either by doing so themselves or by seeking from care providers the ‘stamp of approval’ of information or information providers.¹¹⁶ Evident in this literature was consideration of the potential agendas of information sources, for example not having ‘wholesale acceptance’ of commercial sites¹¹⁶ and being cautious about information and online support, treating it with a ‘pinch of salt . . . grain of truth’.¹¹³ Similarly, men were described in some studies as being cautious about health professionals, who may have conflicting agendas or vested interests.^124,130

Our synthesis indicated that becoming an ‘expert’ could extend beyond information gathering, to developing skills in navigating health services, facilitating patient–HCP interactions and attaining partnership in decision-making.^113,124 Men were described as gaining ‘currency’ and ‘power’ through having knowledge,¹¹³ ultimately becoming informed consumers who ‘shopped around’ for health-care providers and treatments, as described by Oliffe et al.:

Consumer discourses and strategies to contest power relations with health care professionals underpinned many men’s search for prostate cancer information and their commitment to assisting other men.

Second-order, p. 555¹²⁴

The opportunity to build confidence and expertise in communicating with care providers also occurred as part of an intervention, for example through face-to-face question-and-answer sessions or online interactions.^{124,136,208,209} Such involvement with care providers was described as being particularly valued where men felt dissatisfied with clinical interactions, for example owing to lack of time with health professionals and lack of power and partnership.^111,209

Importantly, however, the literature showed that not all men wanted to develop an in-depth understanding of what treatments might be available. This was reflected in varied findings on the extent to which men welcomed the opportunity to act in the role of ‘consumer’ of health services. Some men described not wishing to be active patients/consumers, instead preferring to devolve decision-making to health professionals as experts who ‘know [their] stuff’.¹⁰⁹

Although contemporary health policy may promote a move away from the traditional paternalistic model to shared decision-making, coproduction and a consumerist approach involving the ‘expert patient’, suggestions that the balance may have gone too far were evident, as illustrated by one man in Evans et al.’s study:

Imagine being in a fast flowing river and the guy on the bank has got half a dozen different aids to help you, and he’s shouting to you ‘which one do you want?’

First-order¹¹⁶

Limited informed choice

Self-management support activities (particularly information-based interventions, online and face-to-face support groups) were often positioned by activity providers as promoting informed choice and empowering men as consumers of health care, rather than advising or prescribing.^{109,113,124,136,212} However, although providers (and often men) positioned activities in such ways, some study authors argued that apparent ‘choice’ was sometimes limited to certain options that were endorsed by the group, for example ‘conventional’ treatments rather than ‘alternative approaches’. This was most evident where views varied about the appropriate management of a condition, for example prostate cancer,¹²⁴ and in relation to complementary and alternative medicine.²¹²

Arrington et al.’s²⁰⁸ observations of prostate cancer support groups identified a prevailing attitude that prostate cancer was controllable and should therefore be ‘fought’, favouring ‘active’ forms of treatment. Similarly, Oliffe et al.’s¹²⁴ analysis of observations of such groups proposed that informed choice was limited for those men with prostate cancer who opted for conservative management (watchful waiting or active surveillance) given groups’ favouring of ‘proactive’ options.

Similar themes were identified in a study of men with heart failure, where the authors suggested that, despite apparently promoting informed choice, a nurse-led clinic was positioned as helping men make the ‘correct’ choices rather than true free choices that take into account individual preferences and circumstances.¹³⁵

Alongside informed choice, several interventions and activities across condition types were described as encouraging involvement in wider lobbying and activism activities. In the HIV/AIDS literature, this included expectations about public disclosure of patients’ LTC²¹⁵ and influencing public attitudes about the condition, which could vary with changing public awareness.¹²⁷

[I]t’s about saving lives . . . that’s why you talk about it.

First-order; p. 793²¹⁶

Gray et al.^120–122 reported that men with prostate cancer were more pro-lobbying than women with breast cancer, although the authors recognised that this may partly reflect different histories of the conditions in relation to public awareness. Seymour-Smith²¹⁶ (in reporting experiences of men with testicular cancer and women with breast cancer) also reported a male preference for a group agenda, including education and raising awareness, which may have reflected a male tendency to ‘legitimise’ attendance by demonstrating that their attendance is of benefit to others (as discussed previously in Need for purpose).

Some men expressed the view that activism/lobbying was futile and should not be the focus of a support group.¹²⁷ Elsewhere, Oliffe et al.¹²⁵ observed variation in men’s views around activism and proposed that this may reflect resources available for lobbying when the group’s sustainability was the more pressing concern, and whether the focus was the local support group or the wider (prostate cancer) community.

Key messages: becoming an expert

• Men may value opportunities to learn from peers and health professionals in order to develop their capacity to be informed consumers of health care.
• Acceptability of health information may be improved through the use of medical information/evidence and terminology, which may also help to foster group identity in face-to-face support groups.
• Education may be made more accessible and acceptable for some men by contextualising and individualising information in the form of strategies or ‘usable information’ that can be incorporated into daily life.
• Developing expert knowledge on management and treatment options can be a way for some men to regain a sense of control and identity fractured through chronic illness.
• Although some men may place a high value on technical information and knowledge, overly complex information can also act as a barrier to learning and may also provoke anxiety or feelings of being overwhelmed.
• Men can become empowered to better navigate health services, facilitate patient–HCP interactions and attain partnership in decision-making; however, some men may wish to retain the ability to adopt a passive rather than proactive role in health-care decision-making.
• Some support interventions can be positioned as helping men make the ‘correct’ choices rather than true free choices that take into account their individual preferences and circumstances.