The self-management of longer-term depression: learning from the patient, a qualitative study

Participants

Twenty eight people returned the screening questionnaire expressing interest in an
interview. At this stage, four were excluded because they did not live in South Yorkshire,
one did not speak English and one had experienced depression for six months only.
A further participant was excluded after the MINI interview because they had experienced
only two episodes of depression.

Twenty one participants were interviewed between April and December 2011. Interviews
lasted between 47 and 82 min in length and were held on University premises (16) or
in participant’s own homes (5). No participants wanted anyone else to be present and
all agreed to the interview being audio-taped. The characteristics of participants
are presented in Table 1.

Table 1. Characteristics of Participants

Two focus groups, attended by five and two participants, were held with the aim of
validating the interview findings. The analyses of the groups provided data convergent
with that of the individual interviews. The participatory workshop provided feedback
from a range of stakeholders that also validated the interim findings and presented
no new themes.

Quotes from participants have been anonymised and participants have been numbered
randomly (P1, P2, etc.). Additional consent was gained from Participant 3 to allow
supplementary data to be presented.

Super-ordinate themes

Four super-ordinate themes were found and are illustrated with their sub-themes in
Fig. 2. The detail of these findings is shown in full, with some sub-themes placed in more
than one super-ordinate theme, denoting a complex inter-relationship between themes
dependant on each participant’s personal experiences. Due to the richness and complexity,
it is not possible to explore all the sub-themes, therefore those that were most prominent
have been selected and are reported below (see Fig. 3).

Fig. 3. Super-ordinate themes and selection of sub-themes. The super-ordinate themes and sub-themes
reported

Experience of depression

This first super-ordinate theme describes how participants experienced depression
and the features of most importance to them. They reported an array of symptoms: cognitive,
emotional and physical. However, other aspects of depression were as important and
participants relayed how depression felt to them, its impact on their lives and interaction
with other health conditions. There were many similarities yet also differences, showing
how each person’s experience of longer-term depression was unique.

The episodic or cyclical nature of depression was a key theme, with some participants
experiencing periods in their life when they had no depressive symptoms and others
continually experiencing symptoms but with the severity of the depression varying:

“Obviously within that there’s sort of fluctuations and periods where I’ve been more
depressed or less depressed or probably sometimes when I’m not depressed at all.”
(P16)

The fluctuations affected participants’ use of self-management strategies. Some people
with cycles of depression didn’t feel the need to use self-management between episodes,
others with continuous depression used strategies on an ongoing basis. Some people
reported differences with each new episode of depression. The first episode in particular
was cited as the worst, because at the time people did not know that the condition
would improve or how to manage it.

The long-term nature of depression was often mentioned and several people felt it
was important to accept that they may always experience the condition and that, rather
than hoping it would go away, they needed to develop ways of managing it. Others thought
it was useful to remember that their depression can become less severe:

“Well, I guess the fact that I have got better before, and that I know that people
can get better and it’s not, it’s not like something that’s like incurable or whatever
in that sense. I guess that is a helpful thought.” (P7)

The self

Within this super-ordinate theme participants described how aspects of themselves
were powerful agents in their management of depression. Key features were hope, confidence
and motivation.

Despite many participants reporting a loss of hope and purpose in life when experiencing
depression, they also relayed how both the company of other people and engaging in
activities gave them hope and meaning. Examples were being with children and other
family members, religious practices and being in the countryside:

“You, you’re free aren’t you? You’re like, you know, it’s just you and the elements
i’n’t it…it’s more beauty and, you know, being outside and, you know and, looking
at trees and birds and hills and…I think it’s that hope thing again.” (P12)

Some people had learnt to understand and challenge their negative thinking patterns
that fostered feelings of hopelessness. Many participants discussed the impact of
longer-term depression on their level of confidence and self-esteem. Some were able
to gain confidence over time through engaging in social activities, becoming more
assertive, helping other people and through finding their own successful self-management
strategies. Completing tasks brought a sense of achievement:

“Things appear brighter, increases self-esteem, I really don’t ‘ave any any self-respect,
you know, at the moment I don’t ‘ave a great deal of er you know, if I finish this
[training] course then I’ll probably like give myself a bit of a boost.” (P19)

Finding a positive self-identity was an important aspect of coping with depression
for some. This involved self-acceptance and self-compassion in order to combat the
self-criticism, self-blame and negative comparisons to others that often characterised
their depression.

Participants were able to motivate themselves through selecting activities that were
pleasurable, however small. This helped people to keep busy, move their bodies or
do something even when feeling low, lacking in energy and wanting to stay in bed:

“Look for something that I need that’ll be er useful or er read a book er, finish
reading an article or you know…any number of things just kind of, you know, whatever,
it gets me doing something.” (P10)

Participants explained how motivation sometimes came from rewards and a sense of achievement,
such as enjoyment in seeing a finished product. This could be strengthened by being
able to give to another and be appreciated, such as one person doing jobs for a relative:

“And then again it’s so nice to come back home after that, you feel you’ve done some
good and achieved something.” (P8)

The wider environment

This super-ordinate theme illustrates how aspects of the wider environment impacted
on the participants’ capacities for self-management of their depression. In particular,
they recounted the impacts of services, stigma and discrimination, and the availability
of information.

Although services were mentioned, the majority had seemingly little direct impact
on the self-management abilities of participants, with most people citing other relationships
and activities as being more influential, for example:

“One of the other girls from the group who I’d kind of, sort of been friendly with
while we were talking she came and found me, I actually got more out of sitting talking
to her than I did out of the entire course.” (P4)

This is despite a wide range of services having been used, including primary care,
secondary mental health services and different services in the voluntary and private
sectors including complementary therapies. Many participants highlighted the importance
of primary care services. GPs in particular were mentioned, and while some participants
felt they were lacking in knowledge and experience of mental health, they were generally
considered to provide an essential central role in maintaining an overview of all
services and consistency over time:

“It was having someone who was having an overview because I think previously what
had happened was there were lots of individual people that you got referred to that
you were seeing separately. But nobody was really bringing them together so there
was duplication but no real way of bringing it together and she seemed to be able
to bring the different strands together.” (P11)

Participants stressed that all professionals needed skills in listening, empathy,
respect and sharing power in order to engender trust and hope. Organisational issues
concerned the need to be treated as an individual, the inflexibility of services and
the importance of choice, in particular regarding psychological therapies:

“I think she was the CBT person I was referred to her, got on the waiting list, an
appointment came through…I said ‘I’m sorry I can’t make that appointment because it’s
my first week starting a new job’ and she sounded very huffy about it. And I said,
but I would like to, you know, continue on the waiting list and I never heard from
her again, so she’d taken me off the waiting list, just because I said, I’d rather
not have an appointment (laugh) during my first week at a new job.” (P5)

Different benefits of therapies were cited by participants, including gaining a greater
understanding of themselves and the nature of depression, assisting with resolving
long-standing issues such as childhood abuse, and providing tools or techniques which
they could use in the future. Participants valued having someone to talk to, rather
than receiving an intervention through a computer:

“Just having someone to talk to was quite nice but, you know it didn’t solve my problems
but it kind of, it did help a little bit I s’pose it, again it was somebody who cared,
somebody who was interested.” (P4)

The importance of early recognition of depression was raised and a few participants
commented how receiving a diagnosis had helped with self-management:

“I’m probably happy that it does have a name because it has helped me, erm I’ve been
able to sort of change the way that I work and things that I do to try and keep me
from becoming ill again and if I hadn’t had a diagnosis or a label then that’s probably
not something that would have happened.” (P1)

Social stigma was experienced by many participants, who mentioned labelling, a loss
of status, for example through losing employment, and other disadvantages. Some participants
felt that other forms of discrimination, including racism and sexism, further compounded
their depression. People felt depression was often not understood causing them to
hide it, and sometimes feel shame or internalise the stigma as a result:

“Erm a lot of people think that you are weak and you are not a coper, erm and I think
you actually do believe that a lot of the time yourself.” (P2)

Several participants felt that the stigma and discrimination they experienced was
a barrier to them being able to access services. Some wanted to be able to self-refer
to services and others explained how they didn’t want to access services at all because
it would be put on their medical records:

“If I had depression erm listed on a medical record and then when if my, erm, employer
found out that I have depression then…it can become one of the excuses that they use
to get me, get rid of me, so… I don’t want that kind of risk, I don’t want, I know
that I should have it on it because it will get me more help if and when I need it,
but I don’t want it on record.” (P14)

Participants reported a lack of information or education in a number of areas, both
for themselves and other people, including their family and friends, professionals
and organisations, and the general public. This included information on depression,
self-management and activities or groups that may assist people. Some people said
they would need guidance and support to find the right information that suited them.
Others suggested having lists of what other people find useful, or signposts for where
to find out more information:

“Well, I think people need to be more informed and to be able to make the choices
and they need and you know, if I wasn’t aware anyway, because I was saying this like
you know, I was very naive.” (P15)

Many of the participants said they searched for information by reading books or newspapers,
using the internet or taking part in internet chat rooms. Others researched through
academic journals. There was an understanding that people differ in the type of information
and guidance that would suit them. Some people found information from others with
similar experiences particularly valuable:

“I have been trying to read more about depression and about other ways that people
have found have worked for them.” (P11)

Sometimes information had been introduced by a therapist or mental health professional,
however this could be some time after their depression began. Participants felt there
was a lack of honest information about the longer-term nature of depression and that
during the first episode of depression people should be given clearer information
and advice to recognise and manage future episodes:

“If I could, if I’ve been, they can be told sooner then I won’t have more to deal
with and it will take me much less time to actually get it, get better to then function
again.” (P14)

Self-management strategies

The final super-ordinate theme focuses on those broader aspects of self-management
of depression that are of most importance to participants. They include individuality,
choice and control, a holistic viewpoint and how participants engaged in developing
and maintaining strategies.

Each participant selected a unique personalised mix of strategies, developed to suit
their particular needs, interests and resources available. The mix often changed or
adapted according to circumstances and over time. There was no simple recipe or package
and each selection comprised a wide range of activities, self-help tools and strategies.
An example of this diverse range is shown for Participant 8 in Fig. 4.

Fig. 4. Range of self-management strategies for Participant 8. An example illustrating the
diverse range of activities, self-help tools and strategies for one participant

Some participants also mentioned the importance of being treated as an individual
by professionals and services:

“I think you need to feel that whoever it is trying to help you is just responding
to you as an individual and not through some pair of glasses that they’ve got on that
isn’t about a particular way of doing things.” (P18)

Issues connected with control, autonomy and power were important to many participants.
Several explained they felt less depressed when in control:

“I think it’s important to me, I think because for most of my life I didn’t feel like
I was in charge really.” (P12)

Some participants explained that at times their depression could control them leaving
them feeling powerless and trapped, and having to rely and trust on others to take
control.

Choice was cited as being particularly important and was mentioned throughout in different
contexts by many participants. This included choice about how they wanted to live
their lives, what best suited their needs and having a wide selection of activities
and services to choose from. Without options being available and known about, choice
was not possible:

“I think we’re all different, aren’t we? And I know what I am personally and, er,
I know what’s good for me, what isn’t.” (P8)

People said they chose activities that had specific positive meanings for them. For
example, one participant talked about why she loved riding her own motorbike:

“It’s the speed, it’s the, it’s the unusual erm er thing about a woman on a bike.”
(P15)

Several participants referred to choice with regard to services. Some felt there was
a lack of choice between receiving medication and using other services and described
a tendency for medication to be prescribed too readily and used as a “sticking plaster”.
Others mentioned difficulties in obtaining the particular therapy they wanted:

“I mean you get referred don’t you, from your GP and it’s like pot luck really, cos
you know obviously the resources aren’t limitless are they?” (P12)

Participants explained they had developed a holistic view to self-management that
encompassed all aspects of their being: their minds, emotions, physicality, spirituality,
sociability and creativity. This is illustrated in Figs. 1 and 4 by participants 3 and 8.

Engaging in activities was cited as an important strategy for all of the participants.
The range of activities was diverse, with some holding particular value including
physical exercise, green activities, socialising and being with animals. Some participants
also included health services and anti-depressant medication as part of their mix
of strategies. Many also had a physical health condition and a few commented on the
importance of “joined-up” services for both mental and physical health.

Participants recounted how they consciously developed strategies that worked for them
in their circumstances. Often they used trial and error, testing and monitoring different
strategies and gradually building up expertise in what worked and how to adjust their
lives to stay well. However, they reported that this was often not easy and people
had to be determined and persistent:

“I s’pose it’s like trying to get a car started that’s got a flat battery, you you
can’t, you’ve got to keep pushing, pushing, pushing and you’ve gotta speed it up to
get it going, you know.” (P20)

Some participants felt that unresolved issues had hindered the process, others had
accepted that sometimes they just needed to sit out a low period and wait until it
passed or else to deal with difficulties incrementally one thing at a time.

Several participants said that addressing issues related to life events, however painful
at the time, could both give a sense of achievement and enable them to develop strategies
that worked for them longer-term. For example, bereavement had been a significant
event for a few of the participants and this brought tremendous challenges that could
be met with surprising strength despite repeated episodes of depression.

Balancing activities was found by the participants to be an effective self-management
strategy. People balanced exercise and sleep; work, leisure and daily chores; stimulus
and relaxation; boredom and engagement:

“I think I’ve got to that stage when I know when I’m tired that it’s time to do something
else you know, get up for a walk or er ‘ave a drink summat like that”. (P20)

Participants stated that achieving a balance that suited them involved choosing between
different types of activity, carefully pacing themselves, and limiting, stopping or
cancelling things. Some people balanced the demands of other people and themselves
with their own capacity to take on roles and responsibilities. Continual adjustment
of activity was needed, depending on their mood and energy at the time:

“I watched a television programme and that was ok, but I still felt not very good
at the end of it, so I had to change my behaviour and so I did some chores and still
didn’t feel great so I went on the computer a bit, still didn’t feel great, so I watched
another programme and then the changing of behaviour…erm, seemed to work and I got
out of it…by the time I was going to bed, I felt fine.” (P5)

Many participants had found that building a routine of activities helped with self-management:

“Just gets yourself structured and you have less time to wander off and you know you’ve
gotta, I don’t know, it feels good about achieving certain things each day.” (P13)

Participants had to learn to recognise their own signs of their mood becoming low
and the possibility of relapsing into a period of depression. These were varied and
personal to each participant:

“You’ve been in a bad mood for days, you’re crying a lot, you’re getting agitated,
you’re very stressed, you’re not sleeping.” (P3)

Several participants said it was also useful to notice feeling better and capitalise
on that, but warned that this can wear off and motivation can slip unnoticed. Some
couldn’t recognise the signs themselves and relied on their family to alert them.