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Reconnecting with life: a grounded theory study of mentalhealth recovery in Ireland
YULIA KARTALOVA-O’DOHERTY1, CHRIS STEVENSON2 &AGNES HIGGINS3
1Health Research Board, 3rd floor, Knockmaun House, 42-47 Lower Mount Street, Dublin 2, Ireland,2Faculty of Life and Health Sciences, University of Ulster, York street, Belfast, Co Antrim, NorthernIreland, and 3School of Nursing and Midwifery, Trinity College, University of Dublin, D’Olier Street,Dublin 2, Ireland
AbstractBackground: The concept of recovery has become central to international mental health policy andservice planning. At present there, however, is no unified theory of mental health recovery availableto guide clinical practice.Aim: The aim of this study was to develop a coherent theory of recovering from mental health problemsfrom the point of view of those recovering in Ireland.Methods: The study was guided by classic grounded theory and based on individual interviews with 32volunteers who had experienced mental health problems.Results: The participants’ main concern was identified as striving to reconnect with life. The core cat-egory of reconnecting with life had three interactive subcategories: (1) reconnecting with self throughaccepting oneself as a worthy human being capable of positive change; (2) reconnecting with othersthrough accepting and validating interaction; (3) reconnecting with time, through getting a glimpseof positive future, coming to terms with the past, and actively shaping and executing one’s presentand future.Conclusions: The study shows that accepting, validating and the hope-instilling interaction can facilitatethe process of reconnecting with life and is, therefore, crucial for recovery-oriented care.
Keywords: recovery, grounded theory, subjective experiences, interviews, reconnecting, mental health
Introduction
The concept of mental health recovery emerged from the consumer movement in the USAduring the late 1980s, and has since become central to international mental health policy andpractice (Roberts & Wolfson, 2004). The importance of user-led perspectives on recovery isunderlined by the UK National Institute for Clinical Excellence (NICE) guidelines forschizophrenia (NICE, 2002).
The concept of recovery entered Irish mental health policy in 2006 (Department of Healthand Children, 2006; Higgins, 2008). AVision for Change, the Irish blueprint of mental healthpolicy, describes recovery as a belief that it is possible for persons experiencing mental illness
Correspondence: Yulia Kartalova-O’Doherty, Health Research Board, 3rd floor, Knockmaun House, 42-47 Lower Mount Street,Dublin 2, Ireland. Tel: + 353-1-234500. E-mail: [email protected]
Journal of Mental Health, April 2012 21(2): 136–144© 2012 Informa UK, Ltd.ISSN: 0963-8237 print / ISSN 1360-0567 onlineDOI: 10.3109/09638237.2011.621467
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to recover their self-esteem and to regain control of their lives despite their illness (Depart-ment of Health and Children, 2006). One of the barriers for developing recovery-orientedservices in Ireland is the lack of understanding of recovery by service providers, serviceusers and their carers (Higgins, 2008). The service delivery is still primarily medical-nursing led, with few alternatives to medication (Higgins, 2008).
At the time of the study conception in 2006, no original research on Irish experiences ofrecovering from mental health problems has been published. Some argue that the local con-sumer views on recovery need to be listened to and understood at all levels of service pro-vision (Ramon et al., 2007). The focus of this paper is on reporting a grounded theory(GT) of recovery, developed from the accounts of people with self-experience of mentalhealth problems in the Republic of Ireland.
Background
Within the literature various models of recovery have been identified, including the biome-dical, the psychological, the rehabilitation and the empowerment models (Fitzpatrick,2002). The biomedical and the empowerment models represent two separate fields of recov-ery: the former viewing mental illness as biologically predetermined and environmentallynon-modifiable, whereas the latter denies the existence of mental illness and the need fortreatment (Fitzpatrick, 2002). The rehabilitation model is based on the biomedical model,but allows service users to voice their treatment preferences. The model of psychological re-covery as a re-establishment of positive identity can be loosely positioned between the reha-bilitation and the empowerment models (Fitzpatrick, 2002).
The Collaborative Recovery Model (CRM) highlights the importance of the autonomysupport of the individual, which entails primacy of the service user perspective and choice.(Oades et al., 2005). The Tidal Model of recovery based on the accounts of service-usersand their carers underlines people’s capacity to change and grow (Barker & Buchanan-Barker, 2005). Self-management approaches such as Wellness Recovery Action Planning(WRAP) are also becoming recognised and tested (Higgins et al., 2010).
A literature review identified eight qualitative studies of consumer recovery (Onken et al.,2007). Some of the common themes were: meaning; self-determination; relationships; spiri-tual connection; hope; active coping and resilience (Higgins, 2008; Ridgway, 2001). Suppor-tive and trusting relationships were also considered important for recovery (Onken et al.,2007). A GT of how nurses work with suicidal people identified the core process of recon-necting the person with humanity (Cutcliffe et al., 2006). Stages of recovery were identified,such as moratorium; awareness; preparation; rebuilding and growth (Andresen et al., 2006).
Although multiple models and stages of recovery have been identified, at present, there isno unified theory of recovery capable of guiding clinical practice (Craig, 2008). It may beimpossible to fix a definition of recovery due to the key value of individuality underpinningthis concept (Higgins, 2008). However, identifying core processes shared by different indi-viduals can provide guidelines for practitioners and service users. There is a need for moreoriginal research aimed at conceptualising diverse recovery experiences into a coherenttheory.
Aims
The aim of this study was to develop a coherent theory of mental health recovery from thepoint of view of those recovering in the Republic of Ireland.
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Materials and methods
Design
Owing to the absence of a unified recovery theory (Craig, 2008), the study was conceived asqualitative and inductive. As the concept of recovery had originally emerged from serviceusers (Andresen et al., 2006), the study was based on experiences of service users ratherthan other stakeholders. Service users consulted during the scoping stage commented thatindividual interviews were preferable to focus groups, as people may feel uncomfortable dis-cussing sensitive experiences in a group. Therefore, in-depth interviews were chosen.
Classic GT was selected as the most appropriate method. Classic GT seeks to identify alatent pattern representing the main concern of the participants, and to conceptualise theprocess by which they resolve that concern in a multivariate hypothesis, or theory (Glaser,2001). An interview schedule was drafted on the basis of previous research and consul-tations with service users. The schedule informed the initial interviews, and was constantlymodified following the emerging findings (Glaser, 2001). Data were collected through indi-vidual interviews with 32 participants who had experienced mental health problems. Tocapture socio-demographic details at the end of the interviews participants filled out aquestionnaire.
The study was guided by GT principles of emergence, theoretical sampling and constantcomparison (Glaser, 2001). Emergence and constant comparison mean that all the cat-egories should be emerging from the interviews, and constantly compared within andbetween previous and new interviews (Glaser, 2001). Theoretical sampling is a form ofnon-probability sampling which facilitates the emergence and constant comparison. Afterconducting a small number of interviews, participants and recruitment sites are selectedon the basis of the emerging issues, in order to verify their relevance and essence withother participants (Glaser, 2001). The sampling and interviewing continues until thestudy reaches theoretical saturation, whereby no additional issues are forthcoming whichwould require further modification of the theory or its constituents.
Profile of participants
Table I presents participants’ socio-demographic profile.Most of 32 participants (n = 23) were recruited via community mental health services
(Table I). More than half (n = 18) were male. The average age of the participants was 48years ranging from 25 to 68 years. Nearly half of the them lived in rural areas (n = 15)and over half were residing in urban or suburban areas. All participants were Irish residents.Half of participants (n = 16) reported that their main diagnoses were mood disorders(depression or bi-polar); about one-third (n = 10) had been diagnosed with a schizophrenic
Table I. Participants’ profile by numbers and percentages of participants.
Source of recruitmentMental health services,
n = 23 (71.9%)Peer support or advocacy groups,
n = 9 (28.1%)
Residential area Suburban/urban, n = 17 (53.1%) Rural, n= 15 (46.9%)Gender Male, n = 18 (56.3%) Female, n = 14 (43.8%)Age in years Mean = 48, SD = 11.4, range = 25–68Reported main diagnosis Schizophrenic illness,
n = 10 (31.2%)Mood disorder,n = 16 (50.0%)
Unspecified anxiety,n = 6 (18.8%)
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illness, whereas six reported having been diagnosed with anxiety. The reported average dur-ation of mental health problems was 20.2 years ranging from 2 to 54 years.
Recruitment and analysis
An information letter about the study with contact details of the researcher was distributed torepresentatives of mental health day centres, peer support and advocacy groups. Volunteerscontacted the researcher either directly or via their representatives to agree the time and placeof the interviews.
The study involved three iterative stages of theoretical sampling, interviewing and analysis.The first stage involved interviewing six volunteers attending day centres. Two intervieweesparticipated in peer support groups and found them helpful, whereas two found such partici-pation unhelpful. The second stage involved nine interviews with participants of peer supportand advocacy groups in order to explore the perceived influence of peer group participationon recovery. At the second stage, several participants mentioned that people in rural areaswere somewhat friendlier than in suburban areas, which could influence recovery. Duringthe third stage, 17 day centre attendees from both rural and suburban areas were interviewed.The processes of recovery emerging from service users were constantly compared with thoseattending peer support groups, and within and between all transcripts. The identified pro-cesses shared by all interviewees formed the theory conceptualised as “reconnecting withlife”. Theoretical saturation was reached after the analysis of 32 interviews (Kartalova-O’Doherty, 2010).
Ethical considerations
The study received approval of the Ethics Committee of the Health Research Board(Kartalova-O’Doherty & Tedstone Doherty, 2010). All interviewees provided writtenconsent and were informed that their participation was voluntary and confidential, andthat they were free to withdraw at any time.
Results
Overview of the theory
The participants’main concern was identified as striving to reconnect with life. The core cat-egory of recovery, representing the resolution of the main concern was a gradual progressionfrom disconnection from life to reconnection with life. This process had no final destination,but constituted a gradual strengthening of connection with one’s life, often involving re-peated cycles of disconnection and reconnection:
I joined [peer group], I got some counselling and gradually I became more connected withmyself and the world around me … Suddenly I was talking to people …, and they wouldlisten, and for the first time things began to change … So, from a lack of connection to aconnection. (15)
Reconnecting with life embedded three interactive subcategories: (1) reconnecting with selfthrough accepting oneself as a worthy human being capable of positive change, and making adecision to start fighting to get better; (2) reconnecting self with others through experiencingaccepting and validating interaction; (3) reconnecting with time through getting a glimpse of
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the positive future, coming to terms with the past, and shaping and executing one’s presentand future.
Through the “fog” of disconnection, participants got a glimpse of a positive future whichre-awakened their hope and will to get better. A glimpse of the positive future was either trig-gered by a meaningful connection with others, or by hoping for a better life in the future.Having had a glimpse of a positive future, participants were ready to come to terms withthe past and re-align it with their present and future. Around the time of coming to termswith the past, the participants started planning specific goals (futurising) and executingthem (moving on). Synchronising self and others in time was identified as an importantgoal and tool of reconnecting with life, achieved through talking, doing, understandingand giving back. Fighting for reconnection at times of disconnection made it possible toturn “bad days” into “good days”.
Table II shows the processes of reconnecting with self, others and time.Hope for the future and feeling accepted and validated facilitated motivation to start fight-
ing to reconnect with life. A positive environment was associated with friendliness, accep-tance and encouragement, facilitating self-acceptance, reconnection with others andmoving on in time.
Conversely, seeing no future and having nobody to talk to led to a lack of motivation tofight to get better, and in extreme cases, to give up on one’s recovery. Pessimism of diagnosis,debilitating side effects of medication, hostility and stigma often created barriers to reconnec-tion with life (Kartalova-O’Doherty & Tedstone Doherty, 2010).
The next section will describe such processes of reconnecting with life as making adecision to start fighting to get better, experiencing meaningful connection, coming toterms with the past, futurising and moving on and turning bad days into good days.
Making a decision to start fighting to get better
Whereas support from others was important, the decision to start fighting to get better had tocome from within oneself, through seeing a positive future and realising the need for change:
But definitely, if you’re not going to fight, nobody can do it for you, but… just a little bit ofsupport … really helps. (23)
Table II. Interactive processes of reconnecting with self, others and time.
Reconnecting with self Reconnecting with others Reconnecting with time
Getting back to oneself Encountering somebody friendly andhelpful
Getting back to the here andnow
Accepting oneself as a worthy individualcapable of positive change
Feeling accepted and validated as aworthy individual capable of positivechange
Getting a glimpse of positivefuture (hope)
Making a decision to start fighting forreconnection with life
Developing trust, understanding andempathy through dialogue
Believing that positive change ispossible
Fighting to get better: designing andexecuting own recovery through trialand error
Being listened to, getting positive andconstructive feedback
Coming to terms with the past:reliving and explaining thepast
Developing self-esteem andself-confidence
Synchronising self with others: being,doing, talking, giving back
Futurising and moving on
Turning bad days into good days by using processes above
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Some participants had always had hope that they were worthy of a better life, while othersneeded to get such reassurance from others:
I suppose, I’ve always held a lot of hope that things would get better. (9)
I was talking to [peer name] and nurse. It’s nice to know what you’re around for, thatyou’re not a burden on anyone. (16)
By trial and error, people found which supports and strategies facilitated their “fight”:
I think patients should be given an option for what they want to do for their care plan …
Maybe at some stage you mightn’t know what you want, because you are really unwell.Then you might need some guide, someone to give you some options … Then eventuallyyou are going to know what will work for you. (7)
Giving up as opposed to fighting was associated with hopelessness, accepting the identityof a passive patient, and handing over control of one’s life to medication or carers.Receiving a diagnosis of lifelong mental illness made it difficult to visualise a positivefuture:
Schizophrenia, that’s what I suffer from. And they said “It’s a lifelong disease”… I’d like tobe fully recovered, that’s why I don’t like the idea that this is a life time. (4)
Experiencing meaningful connection
Getting a glimpse of hope was often triggered by meaningful connection with others. Mean-ingful connection entailed feeling accepted and validated, and developing trust:
I was terrified to sit down, I was afraid that I’d fall off the chair, because I was so nervousgoing in. The first impression of [peer group] was… they don’t think I’m “nuts”, they said“Yeah, no problem, of course you can sit on the floor”. So… the first thing that hit me was,here’s people who accept me for where I am, who I am, they don’t really care whether Iwant to stand on me head, once I’m here, and they’re going to help me. (11)
The key characteristics of an environment facilitating reconnection with life were friendlinessand acceptance:
[What’s a good environment?] Friendliness … like a lot of people on the streets of [town]say hello. A lot of people in [another town] wouldn’t say hello. They’re not friendly. (19)
Coming to terms with the past
While making a decision to get better and to start moving on in life, participants felt the needto come to terms with the past. Coming to terms with the past was gradual and required re-peated attempts and non-judgemental audiences:
And what happened with psychoanalysis, over a period of a year I was able to mention it[past abuse] in the [peer support] group … where people seemed to be listening to me,and … the normal feedback without analysing you … I came down off the cross … in asense of that freedom to engage with people and to come into the world. (14)
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Futurising and moving on
Futurising involved looking forward to new experiences. It entailed planning, comparingrecent positive changes with the negative past, and linking positive things from the pastwith the future:
I spent ten years in the house, so I want to be getting out now and enjoying it, it’s like a newlife … And I’m thinking of going to Italy on my own at the end of May, that’s only athought … but the fact is that even if I’m thinking about it, it’s good. (23)
Turning bad days into good days
The concepts of good and bad days emerged as inherent in the fluctuating process of recon-necting with life. Bad days were characterised by the slowing down or acceleration of time,sadness or anxiety, tiredness and loneliness. Good days were effortless and joyful, wherebyparticipants felt optimistic, proactive, and happy:
On hard days lots of things are an effort, driving the car is an effort, cooking the dinner is areal effort, everything is just dissipated… But on a good day… there’s effortlessness aboutthe day. (8)
An important step was acceptance that there will always be “bad days”, as life can throw pro-blems unexpectedly. Bad days could be turned into good days through strategies previouslyfound effective. Such strategies included short-term futurising, i.e. living one hour or one dayat a time, taking medication, or synchronising self and others in time through talking or doingthings together:
I did plan my day, and if it was a bad day, I said “I’ll get another shower, and then I’ll cleanmy teeth”, I had a very structured day. (23)
And sometimes when I’m going to play golf with a friend, it takes away a lot of stuff, justbeing involved in something else and being with somebody. (9)
Discussion
The generated theory does not claim to represent the final picture of mental health recovery.Other researchers could have viewed the data differently and could have generated a differenttheory. Constant verification of the findings by participants may have improved theory-building.
However, this study does offer a useful conceptualisation of recovery from the perspectiveof those recovering, and adds the voices of Irish service users to the international research.Participants complimented psychiatrists, nurses, peers and other professionals and commu-nity representatives for their understanding, encouragement, sense of humour and listeningskills, which facilitated their reconnection with life. Such qualities need to be valued and usedas examples of recovery-oriented care.
The theory of reconnecting with life, clarified and extended the concepts of spiritual re-connection of self and others (Higgins 2008) and reconnecting the person with humanity(Cutcliffe et al., 2006). The findings reiterated the importance of active coping in recovery,labelled as fighting to get better (Ridgway, 2001). The processes of reconnecting with timeenhanced an understanding of rebuilding and growth (Andresen et al., 2006). Various
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measures of quality-of-life can be applicable to the generated theory and can be analysedfrom this perspective (Plummer & Molzahn, 2009).
Whereas it may be challenging to provide a fixed definition of recovery, it is possible tosupport individual reconnection with life through encouraging people to define andexecute their own goals. This view fits with the philosophy of the Tidal Model (Barker &Buchanan-Barker, 2005) and the CRM which highlight the importance of the autonomysupport and personal growth (Oades et al., 2005). Guidelines exist on how to facilitate intrin-sic motivation of persons with mental health problems (Wu et al., 2000). The persons’ abil-ities to make decisions, solve problems and perform actions based on their choice need to besupported. This would facilitate the process of reconnecting with self, i.e. accepting oneselfas a worthy individual capable of positive change. Successful short-term therapeutic activitiescan be repeated and extended in the future. Such activities would facilitate reconnecting withtime, i.e. futurising and moving on. The identified strategies of turning bad days into gooddays are somewhat similar to WRAP self-management guidelines for identifying triggers fordistress and available supports to maintain mental health and recovery (Higgins et al., 2010).The effectiveness of such strategies can be explored further in the mental health research andpractice.
In conclusion, the identified processes of reconnecting with life enhance understanding ofmental health recovery and can be used for further development of recovery-oriented prac-tice. The processes of reconnecting with time, such as futurising, coming to terms withthe past, and turning bad days into good days warrant further investigation. Meaningful con-nection facilitated multiple processes of reconnecting with life, and is therefore crucial forrecovery-oriented care. Service providers should be encouraging service users to participatein a dialogue, and promote hope and belief in recovery at all times of service delivery.
Acknowledgements
The study was part of the in-house research programme of the Irish Health Research Boardfunded by the Department of Health and Children. The study also formed a basis of a PhDthesis submitted by the first author to Dublin City University. The second and third authorswere academic supervisors of the first author.
Declaration of Interest: The authors report no conflict of interest. The authors alone areresponsible for the content and writing of the paper.
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