Eighteen older adults were interviewed (11 females, 7 males) with a mean age of 77.5 years (range 65–91 years). Whilst ethnicity was not a criterion for inclusion, all participants were White British; this reflected the demographic characteristics of the community groups we recruited from. Limitations of the sample are considered in the discussion
(Insert Table 1 here)
The following themes will be presented: experiences of distress, actions taken, help-seeking from healthcare services and perceptions of treatments offered in primary care. Illustrative data are presented to support interpretation and are identified by participant pseudonyms.
Experiences of distress
Within this theme two subthemes will be presented which detail the language that participants used to describe their distress, and the reported causes of distress.
Language of distress
Participants used a variety of terms to describe their distress, including feeling: “low”, “stressed”, “worried”, “run down”, “off” or “angry”. Participants often used terms in combination to conceptualise their distress. Five participants sought help from healthcare services and used language informed by contact with these services. Three participants disclosed seeking help from a GP when distressed and reported receiving a label of depression, these participants used terms such as “depressed” to describe their mood problems. A further two participants consulted a GP and reported receiving a label of anxiety:
“I went to my doctors and he said I’d got anxiety. You know… I'd be saying to friends that had lost someone dear to them, ‘I am sorry and I am sorry’ but I didn't know the depths of it until it happened to me and I think that is the same with this anxiety.”
When discussing their mood problems, the terms “depressed” or “anxious” were only used by participants who had received a label of anxiety or depression from a GP.
Perceived causes of distress
All participants reported attributing their distress to some form of loss, one being the loss of a job, through retirement:
“After retirement and at first when I retired, because I enjoyed the job meeting them many people, it was hard, it was difficult, yeah, as I say you knew all the [people] they knew you and they just let you get on with your job, and obviously you had to be certain places like when taking the meals to the [people] and stuff and you had to be a certain places at certain times, but the rest of the time, yeah, it was a complete pleasure.”
Most retired participants reflected positively on their previous employment as it had provided an opportunity for them to socialise with other employees and members of the public, retirement removed this opportunity for social contact.
Sixteen participants disclosed suffering from physical health problems, as described in Table 1. Some participants reported that physical health problems had caused a loss of physical mobility which resulted in them becoming isolated within their homes:
“I have recently err last year, had a fracture on my hip and the err, fractured the femur so I was in the house for ... from October to March without going out.”
After undergoing hip surgery, Anne discussed how her friends struggled to visit her in her home, which led to social isolation. Participants also attributed experiences of distress to a spouses’ loss of physical mobility. These participants reported taking on a caring role for their spouses to ensure their basic needs were met (e.g. having food to eat). One participant, Helen, described that she “had to” care for her husband, suggesting this role was obligatory.
A few participants attributed their experiences of distress to grief and reported feeling alone. Diane’s husband died over twenty years previously and she still described feelings of loneliness:
“I start dulling my mind and not being interested, I don't know, so I think keeping interests helps with loneliness but you can still be lonely at times, I still miss my husband.”
Some participants described that the loss of multiple friends added to their feelings of loneliness and distress:
“I went to erm two funerals recently and somebody said ‘are you alright [Anne]?’ to me when I was at the second one, and I said not really because I had a phone call just before I came out to say another friend had died.”
With the loss of each friend, participants reported having to deal with an accumulation of grief and the loss of social contacts.
Once participants had recognised that they were experiencing distress, they each described taking some form of action. Most of the participants identified their own ways of managing distress, which did not involve healthcare services. Attitudes of stoicism were presented towards mood problems, as described by Elizabeth when discussing how she managed her distress (attributed to a hip replacement she had one year prior to the interview):
“Erm so I had to sort of wash myself, strip washes and things because you weren't allowed in the bath erm … it was stressful but I just had to get on with it, I just had to get on, I think it is because all of my life I've had to work, I've never had anything given to me on a plate ... erm ... erm, I brought my children up, my first husband left and left me with two teenagers, which was a struggle, but I managed and I married again and I was married for over twenty years and he died eight years ago. But you know what? I just got on with it, so that is what I do now.”
Participants who reported experiencing previous challenges in their lives described how such experiences supported their own sense of resilience and self-sufficiency; they applied this to the way they managed their distress.
To manage their distress, participants pursued independent activities such as reading, gardening and walking. These activities provided positive source of distraction:
“Oh yes, I'm an avid reader, when I go to bed at night I cannot go to sleep unless I have read, sometimes I've been known to, if it is a good book, to read all night, if it is a good book, it does help because you've got your mind on the book instead of on the things that are worrying you because you put yourself in the situation that you're in in the book.”
“I just see [the garden] as a place where I can go out and forget about everything and I do (laughs) yeah it takes time and effort and it is an on-going job, but I like taking the cuttings and everything about it.”
“The walks, erm well they keep me going mentally and physically, erm if I, if I stayed in I don't think that would be good, I think the mind would start to play tricks and I think I'd get problems but I go out, I have to go out.”
Activities such as gardening were helpful as they provided an ongoing task; a continual source of distraction from feelings of distress. Gardening and walking also helped to get people out of the house. Some participants, however, described that a lack of physical mobility presented a barrier to gardening:
“My garden is beginning to look a bit untidy and it erm, it is getting at me, so when I go out I start pulling weeds and what not, then my back starts so I best be careful.”
Ten participants identified as either Catholic or Christian and described that practising their religious beliefs provided them with a sense of inner-strength, as described by Diane:
Diane: “Yes, yes, I am a Roman Catholic.”
Interviewer: “How does that help?”
Diane: “It equips you for when the storm hits you, somehow, I don't know what it is, you don't avoid that storm but somehow you're not alone in it and, you know someone is there, and it provides inner strength.”
The perception that God was present within their lives prevented some participants from feeling like they were facing their distress alone. A few participants, who held religious beliefs, also described attending church as it provided a source of social contact. Attending church facilitated friendships between participants and members of their congregation.
Many participants, who did and did not attend church, sought social support from their friends to self-manage their distress. Female participants particularly reported seeking social support from their female friends:
“Call my friend [Helen] who I'm here with today and erm we talk a lot, we talk a lot on the phone, erm and sometimes I shall say right I'm going see [Helen] and my husband will say ‘oh I'll come with you’ and I say, ‘no you’re not it is going to be a ladies’ afternoon’.”
Female participants expressed a preference to discuss their problems with female friends, rather than their spouses. Although participants felt that their family members were a constant presence in their lives, some were concerned about discussing factors which contributed to their distress with members of their family. Carol discussed how she told her sister that she was suffering from a physical health problem:
“I was apprehensive, erm my sister was saying ‘why are you going to the hospital?’ and I said, ‘oh I've got a cyst’ and she was saying ‘are you sure it is a cyst, are you sure? What have they told you? Have they done this and that?’ and I said, ‘yeah they've done everything there is to do and it is alright, don't worry’, oh she was on the phone at me, so I thought, no, it is alright, it is alright, it is alright, you know and then I didn't want her to know because I knew she'd fall apart, so I had to write it all down in a letter and she was on the phone five minutes after she'd opened it (makes sobbing sounds).”
Participants perceived that discussing factors which contributed to their distress (e.g. suffering from a physical illness) with family members was potentially burdensome due to the family members’ emotional reactions. Such reactions from family members seemed to reinforce participants’ determination to manage their distress on their own.
Participants sought practical support from younger family members:
“Well my son was the main one, he'd come and take me shopping and when they were shopping I'd go with them him and his partner, he'd drop her off then come back with me and he'd get it all out and pack it all away.”
Some participants described that their children were a means to access supermarkets; this helped participants to fulfil their basic need of having food to eat.
Instead of seeking support from family members, most participants valued socialising with their friends as they often had similar problems, as reported by Diane:
“I always feel better having been out and had a good gossip, usually we start off with all our ailments then we have a good laugh and get on with it, oh yes, having a laugh is very important, you feel better with your friends because we all suffer from one thing or another.”
Community groups helped participants to retain friendships which was important as participants sought social support from friends to self-manage their distress.
Help-seeking from healthcare services
Stigma impacted some participants’ decisions to seek help from healthcare services. Participants who had not consulted a GP when experiencing distress discussed the negative perceptions associated with mental health problems:
“Hm, yeah, I think, well with depression and that, I don’t want to be seen as having stuff like that, do I? Its frowned upon and you shut up and shut shop and you find people say ‘no that doesn’t happen to me or in my family’.”
Some participants held stigmatised attitudes towards mental health problems and did not wish to be labelled as having such problems, this perhaps prevented them from consulting a GP.
Within the twelve months prior to being interviewed, five participants described consulting a GP for their mood problems. These participants described taking the decision to consult a GP due to persistent experiences of distress:
Interviewer: “What do you think about going to the doctors [about] mental health problems?”
Diane: “Yeah, I tried to do it on my own until I realised I was getting churned up and I thought, I need some help.”
Diane reported reaching a point where she could not manage her distress alone as this was not alleviating her mood problems. Persistence of mood problems was a major contributing factor for those participants who consulted a GP. Furthermore, by reporting “I need some help”, Diane is gaining a sense of control over her mood problems by consulting a GP.
When asked if they had sought help from healthcare services when experiencing distress within the twelve months prior to the interview, thirteen participants disclosed that they had not consulted a GP. Reasons for this included a lack in continuity of care:
“I don't bother with the GP if I'm honest at all, having the same GP is important and seeing a different one all the time well that stops me from saying I need something, seeing a familiar face would be important.”
Some participants described how seeing the same GP helped them to disclose symptoms of distress. Participants’ reported relationship with a GP affected their decision to seek help from healthcare services. Participants who had received a label of a mental health problem described existing positive relationships with GPs:
“My doctors are very good they are yeah, so I feel as though I can speak to them and I've seen how they are with my husband when they've come out to him when he's been really poorly.”
Participants who took the decision to seek help from healthcare services when experiencing distress reported that they could discuss their problems with a GP.
Perceptions of treatments offered in primary care
Those participants who had consulted a GP were offered antidepressants. Owen reported that the offer of medication was made too quickly by the GP, before understanding his difficulties:
“Essentially until they’ve looked at the problem, how can you diagnose a problem and give medication quite frankly? Well it is erm it is a stop-gap.”
Owen is suggesting that he wanted his mood problem to be understood by a GP before a treatment was suggested. The five participants who consulted their GP each reported being offered medication but this treatment was not acceptable and participants preferred to act by self-managing their mood:
Frances: “My doctor, well he offered me, erm, Valium I think, but I will not-not-not take tablets for it, no way.”
Interviewer: “What would you rather do to manage your mood, other than take medication?”
Frances: “Erm, well … er, doing my garden, I love my pots or, er, seeing people, coming to these groups actually helps a lot.”
Rather than taking medication for mood problems, participants suggested that pursuing independent activities, or social contact with other people, would be a more acceptable solution.
Two participants, Owen and Diane, also reported being offered ‘talking therapies’ by a GP and referred to this form of treatment as “counselling”. Both participants who had been given the opportunity to participate in ‘talking therapies’ reported that they did not attend due to holding stigmatised attitudes towards counselling. Both Diane and Own described counselling as stigmatising:
“If a doctor says ‘I want you to go counselling’ that is pretty much like saying you're going doo-lally and we're going to stick you in a strait-jacket and stick you in a cubicle.”
Participants who did, and did not, seek help from healthcare services when experiencing distress suggested that GPs should direct older people with mood problems to third sector services:
Interviewer: “What do you think doctors should do for distressed older people?”
Stephen: “Hm, well, er … maybe sending them to [community] groups like this, yeah, so they can get out and meet people and have a joke and a laugh, and maybe a piece of cake if it is somebody’s birthday (laughs) yeah, these groups are wonderful.”
If GPs sign-posted older adults to third sector services, such as community groups, this would permit distressed older people to have social contact with other individuals.
Visual representations of the analysis
The concentric circle represented in Figure 1 identifies the management strategies participants used when distressed.
[Insert Figure 1 here]
Figure 1 does not represent a linear process. Individual participants did not necessarily move from independent activities to seeking social support and then to engaging with community resources to manage their mood problems. Figure 2 and 3 illustrate how two participants managed their distress in different ways. Figure 2 is a diagram of Anne’s self-management strategies and Figure 3 represents how Owen managed his mood problems. The colour of each self-management strategy represented in the diagrams corresponds to Figure 1.
[Insert Figure 2 and 3 here]
Figure 2 illustrates that once Anne had identified as experiencing distress, due to a loss of mobility and social contact, she took action by initiating self-management strategies. While Anne utilised reading as an independent activity that she did alone, most of the self-management strategies Anne employed revolved around seeking social support, such as socialising with friends. Seeking social support was linked to attending church and community groups as Anne sought support from individuals who also attended these community resources.
Unlike Anne, once Owen had recognised that he was experiencing distress due to physical health problems, he took action by consulting a GP who suggested a label of depression. Owen perceived the treatments offered by a GP (medication and ‘talking therapies’) as unacceptable and reported self-managing independently from healthcare services. Similar to Anne, Owen attended community groups. Owen did not report attending community groups to seek social support but to learn a skill. Owen also described gardening as an independent activity he did on his own to self-manage his feelings of distress. Figure 2 and 3 show the nuances in how different participants managed their mood problems. Each participant utilised strategies that they deemed appropriate for the management of their own mood problems.