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romoting psychosocial well-being following a stroke: Developing aeoretically and empirically sound complex intervention

arit Kirkevold a,*, Berit A. Bronken a,b, Randi Martinsen a,b, Kari Kvigne b

stitute of Health and Society, Department of Nursing Science, University of Oslo, P.O. Box 1153, Blindern, N-0318 Oslo, Norway

edmark University College, Norway

R T I C L E I N F O

icle history:

ceived 30 January 2011

ceived in revised form 5 September 2011

cepted 2 October 2011

ywords:

mplex interventions

aluation studies as topic

ntal health

chosocial factors

alitative research

oke

A B S T R A C T

Background: The psychosocial consequences of stroke are complex and comprehensive and

include substantial and longlasting impacts on mood, identity, social relationships, return

to work and quality of life. Many studies have explored possible interventions to prevent or

treat psychosocial problems, but the results have generally been disappointing. Very few

studies have provided adequate theoretical accounts of the mechanisms assumed to

contribute to positive outcomes.

Objectives: To describe the development of a psychosocial nursing intervention aimed at

promoting psychosocial health and well-being and to stimulate dialogue about how to

develop and report theoretically and empirically sound complex interventions in nursing.

Design: A systematic, stepwise approach was used, consistent with the framework

recommended for developing and evaluating complex interventions by the UK Medical

Research Council.

Data sources: Systematic reviews of empirical studies regarding the psychosocial

consequences and needs of patients following stroke; qualitative, experiential studies

of stroke and stroke recovery; theories of psychosocial well-being, coping, life skills,

narrative approaches to rehabilitation and guided self-determination.

Review methods: Each systematic review was examined to determine the major

psychosocial challenges and needs experienced by stroke survivors, focusing on how

these challenges and needs developed over the illness trajectory, how previous

interventions had sought to address them and the effective mechanisms assumed to

affect the level of success of interventions. Qualitative studies were examined to reveal the

subjective experiences of stroke and stroke recovery, paying particular attention to the

development of needs across time and context. A qualitative synthesis of the major

characteristics of the trajectory of stroke rehabilitation and recovery during the first year

was developed. Theories were examined to illuminate possible effective mechanisms and

actions aimed at promoting psychosocial well-being during the stroke recovery process.

Results: A dialogue-based intervention comprising eight encounters between stroke

survivors and trained health care workers was designed, based on narrative theories,

empowerment philosophy and guided self determination. Worksheets and a guiding

topical outline were developed to support the dialogue.

Conclusions: The UK Medical Research Council framework facilitated the systematic

development of an empirically and theoretically informed complex nursing intervention

aimed at promoting post-stroke psychosocial well-being.

� 2011 Elsevier Ltd. All rights reserved.

Corresponding author. Tel.: +47 22 85 05 69.

E-mail address: marit.kirkevold@medisin.uio.no (M. Kirkevold).

Contents lists available at SciVerse ScienceDirect

International Journal of Nursing Studies

journal homepage: www.elsevier.com/ijns

20-7489/$ – see front matter � 2011 Elsevier Ltd. All rights reserved.

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M. Kirkevold et al. / International Journal of Nursing Studies 49 (2012) 386–397 387

What is already known about the topic?

Psychosocial difficulties following stroke may impederehabilitation and recovery.

Few effective psychosocial interventions are available. The effective mechanisms of psychosocial interventionsare rarely described.

What this paper adds

An example of how to apply the systematic, stepwiseapproach suggested by the UK Medical Research Councilfor developing nursing interventions.

A proposed theoretical and empirical foundation for acomplex nursing intervention targeting psychosocialneeds post-stroke.

A description of the assumed effective components of acomplex psychosocial nursing intervention.

. Background

The psychosocial consequences of stroke can beomplex and comprehensive. Research has documentedubstantial and longlasting effects on mood, identity, socialelationships, return to work and participation in valuedctivities (Knapp et al., 2000). Approximately one third ofose affected report depressive symptoms, and 20% report

nxiety during the first few months or years (Barker-Collo,007; Ferro et al., 2009; Hackett et al., 2008a,b). Generalsychological distress and social isolation are alsorevalent (Knapp et al., 2000).

The psychosocial consequences of stroke may signifi-antly affect long-term functioning and quality of lifeerro et al., 2009; Teoh et al., 2009). Anxious and

epressed stroke survivors benefit less from rehabilitationrograms and have higher mortality rates than patientsithout such symptoms (Hackett et al., 2008a,b; Ferro

t al., 2009). Difficulties coping and loss of control isssociated with reduced functioning and well-being

onnellan et al., 2006).The causes and risk factors of psychosocial problems are

mbiguous. Two main theories of post-stroke depressionnd anxiety have been suggested (Whyte and Mulsant,002). The first proposes that depression and anxiety areirect effects of biological mechanisms, i.e., that ischemicrain lesions damage the nervous circuits regulating mood.his theory is supported by findings that the location andxtent of ischemic brain damage are associated withepression. The second theory proposes that post-strokeepression is caused by psychosocial mechanisms, i.e., thatepression and anxiety are reactions to overwhelmingtress, affective overload and an inability to cope with thextensive losses following a stroke. Post-stroke depressionay also be classified into early onset, or reactive,

epression, which develops hours or days after stroke,nd late onset depression, which occurs 3–6 monthsllowing the stroke. Early onset is more strongly

ssociated with spontaneous remission than later onsetepression. Whyte and Mulsant (2002) argue that post-troke depression is multifactorial and consistent with aiopsychosocial model. They suggest that a biological

mechanism may be particularly relevant for explainingearly-phase depression, whereas the psychosocialmechanism may be increasingly prominent in late-onsetdepression. Further research is needed to find effectivestrategies for the primary prevention of post-strokedepression, taking these different mechanisms intoaccount (Whyte and Mulsant, 2002).

A large number of studies have explored possibleinterventions to prevent and/or treat psychosocial pro-blems (Hackett et al., 2008a,b; Knapp et al., 2000; Smithet al., 2008; Redfern et al., 2006). Although the results havegenerally been disappointing, a number of trials havedocumented modest positive outcomes. Pharmacologicaltreatment has been found to be effective in treating post-stroke depression, but not in preventing it (Hackett et al.,2008a,b). The research on psychosocial interventionssuggests that information, emotional support, practicaladvice and motivational support are important (Ellis et al.,2010; Smith et al., 2008; Redfern et al., 2006). The detailsof how the different elements of the interventionscontribute to positive outcomes and which elementswork best at different stages and in different subgroupsare not clear, however (Ellis et al., 2010; Smith et al., 2008;Redfern et al., 2006). The lack of clarity regarding theeffective mechanisms is attributed to the fact that veryfew studies have provided adequate theoretical accountsof the mechanisms assumed to contribute to positiveoutcomes (Ellis et al., 2010; Smith et al., 2008; Redfernet al., 2006).

Nurses are key professionals in the rehabilitation ofstroke patients and are ideally suited to address thepatients’ psychosocial needs and provide support andguidance to improve coping (Kirkevold, 2010). Never-theless, few nursing interventions have been developedthat specifically address the psychosocial well-being ofstroke survivors (Burton and Gibbon, 2005; Watkins et al.,2007). A recent review concluded that nursing interven-tions are underdeveloped and inadequately described(Forbes, 2009). In this paper, we respond to thesechallenges by describing the development of a psychoso-cial nursing intervention aimed at promoting psychosocialhealth and well-being. Specifically, we highlight the use ofempirical evidence and theoretical assumptions in guidingthe development. This intervention is assumed to addressthe psychosocial mechanism of post-stroke ill-being thatmay lead to depression and anxiety (Whyte and Mulsant,2002) by facilitating psychosocial adjustment. We hopethat this paper will stimulate a dialogue about how todevelop and report theoretically and empirically soundcomplex interventions in nursing.

2. Design and methods

We used a development approach consistent with theframework recommended for developing and evaluatingcomplex interventions proposed by the UK MedicalResearch Council (MRC) (Campbell et al., 2000; Craiget al., 2008). Complex interventions are ‘‘usually describedas interventions that contain several interacting compo-nents’’ (Craig et al., 2008, p. 979). Several dimensions ofcomplexity may be present, including the number of

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M. Kirkevold et al. / International Journal of Nursing Studies 49 (2012) 386–397388

teracting components, the number and difficulty of thehaviours required by those delivering or receiving thetervention, the number of groups or organisationalvels targeted by the intervention, the number andriability of outcomes and the degree of flexibility oriloring of the intervention (Craig et al., 2008, p. 979). TheRC framework has recently been recommended (Forbes,09) and found useful (Maindal et al., 2010) for thevelopment of nursing interventions. This frameworkscribes the development and testing of complex healthterventions in five phases, from the initial pre-clinicaleory and research review’ phase, through the ‘model-g’ and ‘exploratory trial’ phases into the ‘Randomizedntrolled Trial’ phase and, finally, the ‘long-termplementation’ phase. In the revised version of the

RC framework (Craig et al., 2008), the development andaluation process was described in a less linear fashion.rthermore, the importance of integrating a wide array

evidence, including knowledge from qualitativesearch and practical experience, has been emphasised underpin and optimise the intervention prior to anyal work. We have completed the first three phases ande currently analyzing the experiences and data collectedring these phases. We expect that this work will equip

with a sound theoretical and practical basis forsigning a follow-up, controlled trial in which theperiences and insights gained during the previousases are incorporated. We believe that the carefulvelopment of the theoretical foundations of ourtervention will help clarify how the different elementsntribute to positive outcomes. In the following sections,e present the theoretical and empirical foundations ofe intervention, practical deliberations and the inter-ntion. The design of this study is summarised in Fig. 1.is paper presents the results of the first two phases ofr study.

3. Phase 1: identifying evidence and theory

The MRC framework underscores the importance ofreviewing the research literature and clinical experience toidentify the specific needs for an intervention and relevantoutcomes, to review what we know about effectiveelements that may be integrated and to examinetheoretical perspectives that may explain the effectivenessof the intervention (Craig et al., 2008).

3.1. Methods for conducting needs assessment

The needs assessment for the intervention presented inthis paper was carried out using a number of steps. First,the need for psychosocial support was suggested by anumber of previous longitudinal studies by members ofthe research team, which focused on the subjectiveexperiences of people adjusting to substantial changesin life following a stroke (Eilertsen et al., 2010; Kirkevold,2002; Kvigne and Kirkevold, 2003; Kvigne et al., 2004). Asynthesis of these findings has been published previously(Kirkevold, 2010).

Second, a review of the literature sought to identifysystematic reviews of post-stroke psychosocial needs andthe effectiveness of interventions addressing these needs.We chose systematic reviews because there was extensiveliterature in this area, and a number of high quality reviewswere available. The strategy for the literature review issummarised in Box 1.

We identified 16 reviews, which were examined todetermine the major psychosocial challenges and needsexperienced by stroke survivors, how they developed overthe illness trajectory and how previous interventions hadsought to address them. We also looked for the effectivemechanisms of the interventions and the factors assumedto affect their level of success.

Fig. 1. Structure of intervention development process.

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M. Kirkevold et al. / International Journal of Nursing Studies 49 (2012) 386–397 389

Third, theories were examined to illuminate possibleffective mechanisms and actions aimed at promotingsychosocial well-being during the stroke recovery process.he selection of theories was guided by the findingsbtained during the first two steps, which highlightedajor goals, factors and issues that needed to be taken into

ccount to promote psychosocial well-being. We specifi-ally sought theories that could help us conceptualise andperationalise psychosocial well-being and obtain a deepernderstanding of the psychosocial mechanisms related todjustment and coping following stroke. Based on ourrevious qualitative studies, we sought theories that could

guide us in developing strategies to support further under-standing of stroke and its ramifications and also strategiesthat could support participation and personal control.Finally, we sought theories regarding effective communica-tion with people suffering from aphasia.

The above steps led to the initial development of apsychosocial intervention aimed at promoting psychoso-cial well-being by reducing stress and uncertainty andimproving understanding, predictability and copingthrough goal-directed professional support. The proposedintervention was evaluated and critiqued by patient andrelative representatives, clinical experts and researchersduring several expert group meetings. The methods usedto recruit the participants and evaluate the interventionare summarised in Box 2.

The findings from the above steps, which are alignedwith phases 1 and 2 of the MRC framework, are presentedin the following sections.

3.2. Psychosocial challenges and needs following stroke

A substantial number of qualitative studies (Danielet al., 2009; Hafsteinsdottir and Grypdonck, 1997;

Box 1. Search and review strategies for the literature

review

Search strategy:

Literature searches were conducted in Medline,

Cochrane, Cinahl and Psychinfo, using various com-

binations of the search terms stroke and psychology,

depression, anxiety, psychosocial factors, psychoso-

cial well-being and qualitative. The major searches

were conducted during 2007 and 2008, with supple-

mentary searches conducted during 2010 and spring

2011. The searches were limited to English language

review articles, systematic reviews and evidence-

based reviews. These searches generated over 100

articles.

Selection procedure:

Titles and abstracts were reviewed, and the following

inclusion criteria were applied: stroke patients, non-

pharmacological, psychosocial needs and conse-

quences and psychosocial intervention. The following

exclusion criteria were used: non-empirical articles,

interventions not focusing on psychosocial needs and

consequences, and interventions directed towards

family and informal carers. The full text of articles that

met the initial inclusion criteria were read, leading to

the exclusion of additional articles that did not meet

the inclusion criteria.

Quality evaluation:

The included reviews were evaluated using the quality

criteria recommended by the EPOC (Effective Practice

and Organisation of Care) group in its guide for review

authors available at www.epoc.cochrane.org. Reviews

judged to be of high or moderate quality in terms of

documenting systematic searches, data extraction,

data analysis and reporting of findings were included.

The final sample included 16 systematic reviews.

Data extraction:

Data were extracted to answer the following ques-

tions: what are the major psychosocial challenges

and needs experienced by stroke survivors? How do

psychosocial challenges and needs develop over

time? How have previous interventions sought to

address them? What are the assumed effective

mechanisms of the interventions? Which factors

appear to affect the level of success? Reviews of

qualitative studies were examined to identify subjec-

tive experiences of the psychosocial consequences of

stroke and stroke recovery, and to determine how

psychosocial needs develop over time and across

contexts.

Box 2. Methods for recruiting and conducting expert

evaluation of the preliminary intervention

The preliminary evaluation was guided by an action-

oriented approach.

Recruitment procedure:

A wide range of health care professionals within stroke

care and rehabilitation (physicians, physiotherapists,

occupational therapists, nurses, speech therapists and

psychologists), leaders at different levels in hospitals

and community stroke care, stroke representatives

and family carers were invited to attend expert meet-

ings at three locations in the southern part of Norway

during 2007 and 2008. Two or three of the researchers

were usually present and facilitated the discussions,

applying a focus group approach.

Sample:

A total of 50 people were invited to participate in three

large groups (ranging from 10 to 18 members) and

three smaller groups (ranging from 4 to 8 members).

The groups met between one and 3 times.

Data collection:

The groups received written and oral information

regarding the intervention and were invited to discuss

the following aspects of the preliminary intervention:

the relevance and importance of the proposed content,

structure, approach and methods; issues/content lack-

ing coverage; how the intervention ought to be orga-

nized and integrated into existing health care structures;

feasibility and training needs.

Data analysis:

Written notes were taken at each meeting. The research

team systematically reviewed the preliminary interven-

tion in light of the comments. The suggestions from the

expert meetings were incorporated whenever appro-

priate. When conflicting suggestions/feedback were

provided, the research team sought to resolve the issue

by re-reviewing to the literature and consulting specific

Further detailed information is available upon request. experts on the issue at hand.

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M. Kirkevold et al. / International Journal of Nursing Studies 49 (2012) 386–397390

wrence, 2010; McKevitt et al., 2004; Murray et al., 2003;lter et al., 2008) have demonstrated that the recoveryd adjustment process following stroke is lengthy,manding and fraught with uncertainty. Patients andeir families struggle to make sense of their experiences;dily symptoms are unfamiliar and confusing, andotional reactions and functional progress are hard to

edict. Stroke patients express surprise at the time it takes improve despite their strong commitment and activerticipation in rehabilitation programs. The process ofjustment and recovery lasts well beyond the formalhabilitation period during which patients are offeredecialised rehabilitation services.In our studies (Eilertsen et al., 2010; Kirkevold, 2002,

10; Kvigne and Kirkevold, 2003; Kvigne et al., 2004), weund that patients went through different phases duringe first one to two years. Their concerns graduallyidened from being focused on bodily recovery, throughuggling to re-establish a functioning and meaningfuleryday life (in which they seek to assume previous roles,lued activities and significant relationships), to nego-ting their self-understanding and re-establishing their

entity in light of the changes brought about by the stroke.ne of the participants in these studies judged them-

lves fully recovered two years later, despite the fact thatajority of the participants had resumed most functions,

les and activities in which they were involved prior toe stroke. The patients seemed especially vulnerable toychological stress during periods of transition, i.e., whileing discharged from the stroke unit/acute care hospital,ing discharged from follow-up services, attempting tosume new roles and activities outside the home andhen acknowledging that the stroke would probably haveasting impact on their life. Most continued to struggle toprove and expressed insecurity and a lack of guidance ineir continued adjustment process throughout the firsto years.Systematic reviews of qualitative studies (Hafsteins-

ttir and Grypdonck, 1997; Lawrence, 2010; McKevitt al., 2004; Murray et al., 2003; Salter et al., 2008) supportese findings, although few studies have followedperiences of the recovery- and adjustment process assely as ours. In light of the high prevalence of

ychological difficulties and symptoms in stroke patientsurray et al., 2003), the findings from the literature

view suggest that targeted psychosocial support might needed to facilitate post-stroke adaptation and adjust-ent.

. Existing interventions aimed at promoting psychosocial

alth and well-being

A review of existing interventions aimed at addressinge psychosocial consequences of stroke indicate thattention has been directed towards specific psychologicaloblems such as depression and more general psychoso-l needs and challenges, e.g., a lack of information, sociallation and coping difficulties. These are summarisedlow.Preventing post-stroke depression has proved difficult.ckett et al. (2008a) reviewed ten randomised controlled

pharmacological trials and four psychotherapeutic trialsand found no significant effect of the pharmacologicalinterventions. There was some evidence for improvedmood following psychotherapeutic treatment, but theeffect size was limited.

Treating depression after stroke has also provedchallenging. Although a systematic review of 16 trials(12 pharmacological and 4 psychotherapeutic trials) foundevidence for a beneficial effect of pharmacological treat-ment, adverse effects also increased (Hackett et al., 2008b).The psychotherapeutic interventions showed no signifi-cant effect.

Psychosocial interventions focused on resolving psy-chosocial difficulties more generally have also had gen-erally disappointing effects. The provision of information,education, leisure therapy, support workers and counsel-ling has shown weakly positive or no effects (Knapp et al.,2000). These results were mostly attributed to weaknessesin study design; inadequate intensity, timing and trainingof therapists and a lack of attention to theoretical modelsthat could guide the development of psychosocial inter-ventions; the authors strongly recommend that this line ofresearch be pursued.

The systematic review by Smith et al. (2008) regardingthe provision of information to stroke patients and theircaregivers is slightly more promising. The authors con-clude that some benefits result from providing informa-tion, although these are clinically small. In particular, theirreview suggests that active approaches, combining teach-ing and the provision of knowledge with self-study,individualised counselling and support, are more effectivethan passive approaches for important outcomes such asrelieving depression and anxiety.

In a recent comprehensive review that specificallyfocused on complex interventions in stroke care, Redfernet al. (2006) reviewed 67 studies that tested complexinterventions intended to change knowledge, beliefs orbehaviours. Of these, 30 studies targeted adjustment andrecovery after stroke, and these involved education,training, counselling and social support. These interven-tions, particularly the informational and social supportinterventions, were less likely to succeed. Consistent withprevious studies, Redfern et al. concluded that fewcomplex interventions have been adequately developedor evaluated and recommended greater attention totheoretical development and methodological quality.

Ellis et al. (2010) responded to the repeated cry forfurther theoretical work with a systematic review of theeffect of stroke liaison workers on stroke patients andfamily members. They explored the relative effects ofvarious models and examined possible effective mechan-isms. They compared different types of liaison, informa-tional and educational and social support interventionsand classified them into three groups according to theirdegree of proactivity–reactivity, flexibility and structure,and scope (proactive and structured, reactive and flexible,and proactive and focused). Conducting an individual-levelmeta-analysis, the authors found little evidence of anoverall effect on patients and families regarding healthsatisfaction and level of independence, although patientsdid express satisfaction that ‘‘someone has really listened’’,

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M. Kirkevold et al. / International Journal of Nursing Studies 49 (2012) 386–397 391

nd carers were satisfied with the information andducation they received. Subgroup analyses suggestedat persons with mild to moderate stroke seemed to

enefit most from this complex intervention, but theuthors cautioned that further research was needed toentify the specific aspects of this complex interventionat might be most effective and appropriate for different

ubgroups of stroke survivors and carers. Further researchomparing the effectiveness of the liaison service to earlyupported discharge services, which have shown positiveffects, was also recommended (Early Supported Dischargerialists, 2009; Larsen et al., 2006; Outpatient Servicerialists, 2003).

None of the above reviews specifically addressed thesychosocial needs of stroke survivors with aphasia, whoomprise approximately one third of stroke survivorsngelter et al., 2006). This group is particularly vulnerable anxiety, depression and social isolation (Code anderrmann, 2003; Code and Petheram, 2011; Kelly et al.,010). The language problems experienced by this groupay prevent them from talking to others about their

roblems and concerns, and they may have extensiveifficulties in accessing the services that they need (Hilarind Northcott, 2006; Parr et al., 2006; Shadden andagstrom, 2007). Frequently these patients are excludedom intervention studies due to their difficulties in fillingut questionnaires or participating in interviews. Sub-tantial research has been conducted to address thenguage and communication problems of people with

phasia (Lyon, 2004; Parr et al., 2003; Shadden, 2005).urther research is needed, however, regarding theevelopment of interventions that address their psycho-ocial needs more broadly.

The following observations recur frequently in theterature reviewed above: outcomes are modest, there is

lack of theoretically founded interventions, and inade-uate attention has been paid to methodological chal-nges. Despite these shortcomings, the literature

highlights the following important aspects that shouldbe considered in the next generation of research:

� the specific goals and outcomes to be targeted,� the timing and intensity of the intervention,� the active involvement of patients and carers,� the development of individually relevant coping skills,� close attention to the mechanisms that may facilitate

psychosocial well-being, and� the flexibility to adjust the intervention to the needs of

different subgroups.

Based on the evidence reviewed above, we concludedthat there is a need to develop and test the effectiveness ofan intervention that seeks to promote psychosocial well-being during the recovery and adjustment process over thefirst year post-stroke. Such intervention must activelyengage the stroke survivors in the process and build ontheir available coping resources. In the next section, wedetail the theoretical deliberations that guided thedevelopment of the intervention.

3.4. Developing the theoretical structure of the intervention

The theoretical structure of the intervention is illu-strated in Fig. 2.

3.4.1. Overall goal of the intervention – promoting

psychosocial well-being

In contrast to intervention studies that address specificpsychosocial problems (e.g., depression), we assumed ahealth-promoting perspective. The reviewed literaturesuggested that supporting and strengthening patients’psychosocial resources could facilitate coping and increasewell-being.

Psychosocial health and well-being are closely relatedand may even be seen as inseparable concepts (Bognar,2008; Tengland, 2010). We chose to use the termpsychosocial well-being to highlight the subjective and

Psychosoc ialwell being

Defin ed as: (a) a bas ic mood of joy, pleasure and wellbei ng and th e absen ce of sadnes s or a feelin g of empt ines s, (b) pa rticipa tion and engagement in mean ingful activ itie s be yond onese lf, (c) good soci al relat ions and a feeli ng of l oving and being lo ved in mutua l relations, an d (d) a se lf con cept cha racteri zed by se lf valui ng, se lf ac ceptance, usefulne ss and be lief in ones own abi lities

Struggling to understand and adap t

Acutestroke hits wit houtwarning

Inte rventio n focu s• Foster un derstandin g and (re )creation of mean ing th rough ‘nar rative dialogue s’

• Support patient ’s coping efforts and deve lop ment of ne w life skills through ‘Guided self de ter mina tion ‘ prob lem solvin g metho d

To(a) Bod ily change s and

impa irmen ts(b) Change s in ever y day

life (c) Identit y threat s

Patient is thrown into a sit uation of confusio n/chao s

Sense ofcoherenc e

Life situat ion is:

Compreh ensi ble, manageab le & meaningf ul,

Fig. 2. Theoretical structure of intervention.

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M. Kirkevold et al. / International Journal of Nursing Studies 49 (2012) 386–397392

teractive or social aspects of health. Theories of well-ing are often classified into three categories (Parfit,84; Brulde, 2007): hedonistic theories focus on theperience of pleasure or happiness, desire-fulfilmenteories emphasise the importance of desires or mean-gful goals in promoting well-being and objective listeories maintain that certain things are good for usgardless of whether or not they are wanted. We took asr point of departure the statement that psychosocial

ell-being ‘‘is high to the degree that the person’snscious cognitive and affective experiences are positived low to the degree that the person’s conscious cognitived affective experiences are negative’’ (Næss, 2001, p.40). According to this perspective, psychosocial well-ing has four dimensions: (a) a basic mood of joy,easure and well-being and the absence of sadness or aeling of emptiness, (b) participation and engagement ineaningful activities beyond oneself, (c) good sociallations and a feeling of loving and being loved in mutuallationship(s) and (d) a self-concept characterised by selfceptance, usefulness and a belief in one’s own abilities.is represents a hybrid conceptualization (Brulde, 2007),knowledging that psychosocial well-being is a conse-ence of intra-individual experiences, processes andlues, as well as external resources and factors such ascial relationships and support. Our review of theerature regarding the psychosocial consequences ofoke highlighted that each of these dimensions may bereatened following a stroke. Consequently, these dimen-ns were chosen as goals or outcomes to target with the

tervention (see Fig. 2).Major threats to well-being following stroke include

periences of chaos and a lack of control. This drew ourtention to Antonovsky’s theory (1987), which connectsalth and well-being to the experience of a sense ofherence in life. A sense of coherence is promoted byperiencing diverse life events as comprehensible (cog-tive), manageable (instrumental/behavioural) andeaningful (motivational) (Antonovsky, 1987; Erikssond Lindstrom, 2005, 2006). Because the literature reviewderscored that these aspects might be threatened byute stroke, they were seen as intermediate goalssential to the promotion of psychosocial well-being.nsequently these goals guided the development of the

tervention (see Fig. 2). In the two next sections, wescribe what we assume to be the effective components

the intervention that may help in reaching these goals.

.2. Storytelling as a means to promote understanding,

eaning, identity and self-esteem

As emphasised above, major issues following strokeclude the confusion and lack of comprehension andeaning experienced during the early phases of thejustment process. In attempting to address this issue,

e drew on ideas from narrative theory (McAdams, 2009;lkinghorne, 1988; Sarbin, 1986). Telling stories with therpose of explaining who we are, who we would like to, what values we cherish, which activities are important

us and with whom we socialise is a normal part of lifed contributes to the building and maintenance ofentity (Lieblich et al., 2004; McAdams, 2009). Narrative

theories emphasise that human beings create meaning intheir lives through the stories they tell about themselvesand others. Stories constitute our self-understanding,reflect our culture and contribute to the structuring andcreation of meaning in our lives (Polkinghorne, 1988;Sarbin, 1986). Furthermore, stories are essential in relatingto others. Through stories, we seek to position ourselveswithin the larger social and cultural fabric, relating ourpersonal narratives to the ‘master narratives’ that areavailable to us in our society. At the same time, otherpeople align us with master narratives that we maywelcome or oppose (McLeod, 2007), e.g., a handicap or achronically ill ‘master narrative’. Through narratives, weseek to negotiate a position within a given social contextthat gives meaning, direction, identity and value to ourlives (Taylor, 2007; Kraus, 2007). Research suggests thattelling one’s story is a fundamental need following atraumatic event and that this may actually promote healthin and of itself (Frank, 1995, 1998). Moreover, an inabilityor lack of opportunity to tell one’s story may lead to stressand psychological ill-being. Given the above, we assumedthat being encouraged and supported to tell one’s story,receiving responses from others and experiencing thatstories are shared would stimulate reflection and adjust-ment and strengthen identity, self-understanding and self-esteem.

People suffering from aphasia are restricted in theirnatural abilities to tell their stories through writing orspeech (Parr, 2004; Parr et al., 2006; Shadden and Hagstrom,2007). Nevertheless, research has highlighted the impor-tance of storytelling to maintain or recreate one’s identityfollowing aphasia (Hinckley, 2010; Moss et al., 2004;Shadden, 2005). In this intervention, we used an approachthat acknowledged the importance of narration andencouraged storytelling for people having language pro-blems. To overcome the challenges of providing psychoso-cial follow-up to people having aphasia, we used a methodtermed ‘‘Supported Conversation for Adults with Aphasia’’(Kagan et al., 1996; Simmons-Mackie et al., 2010).Emphasising the fundamental importance and value ofdialogue for all persons, this method was developed toimprove communication between persons with aphasia andpersons without communication challenges, therebyimproving access to social interaction. This method assignsa particular responsibility for facilitating social interactionsto the person without communication difficulties andprovides a number of different techniques that may enhancecommunication and understanding among persons withcommunication difficulties. These include the conscious useof non-verbal communication, pictures, writing and draw-ing to convey thoughts, feelings, experiences and actions,and the use of illustrated communication materials andkeywords to communicate written messages (Kagan et al.,1996; Simmons-Mackie et al., 2010). In applying thismethod, we sought to facilitate open and equal conversa-tions between people with aphasia and the health careprofessionals providing the psychosocial support interven-tion. At the same time, we developed particular commu-nication tools (detailed below) aimed at supporting thedevelopment of an identity-promoting narrative (Andersonand Marlett, 2004a,b).

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M. Kirkevold et al. / International Journal of Nursing Studies 49 (2012) 386–397 393

.4.3. Promoting coping and the acquisition of new life skills

rough guided self-determination

As demonstrated by our review of the literature, copingllowing the advent of a serious, long-term illness, such as

troke, is a major issue. To deal effectively with theonsequences and accomplish recovery and adjustment, itay be necessary to support and strengthen the patient’s

xisting coping resources and support the development ofew life skills. We premised our intervention on thessumption that people are generally capable of dealingith life events and prefer being actively in control of theirves, yet may still need support when faced with new andhallenging life events such as the advent of seriousisease. We therefore sought to develop an interventionat acknowledged that patients are active partners and

gents in their own recovery process. This is in line withe ‘empowerment’ or ‘patient participation’ philosophies

roposed within the health promotion literature (Ander-on and Funnell, 2005, 2009; Leplege et al., 2007;offmann, 2004).

To address these issues, we drew on the theoreticalerspective of life skills development (Nutbeam, 1986),perationalised through the method termed ‘‘guided self-etermination’’ (Zoffmann, 2004). According to thiserspective, patients make decisions on issues related toealth and well-being depending on their own values anderspectives regarding the issues that are important toem and how they understand their needs and problems.

t the same time, certain life skills and abilities are neededhen faced with disease. These include insight into one’s

wn reactions towards the disease, the ability to identifynd describe the problems and challenges associated with, experience with diverse ways of reacting to andanaging it, and the ability to solve problems and conflicts

everyday life in ways that integrate the disease whileonouring important values, life goals and activities.revious research (Zoffmann and Lauritzen, 2006) hasemonstrated the effectiveness of supporting personsuffering from chronic conditions in developing life skillsased on this empowerment approach.

The theoretical strands briefly described above directede further development of the intervention by helping usentify the specific goals and aims of the interventionsychosocial well-being), the strategies used to promoteell-being (i.e., the use of story telling to supportterpretation, the recreation of meaning and the strength-

ning of psychosocial identity, and the development ofoping and life skills by promoting self-determinedroblem solving and value clarification, thereby strength-ning agency and control). In the next section, we describee intervention in greater detail.

. Phase 2: modelling process and outcome

Based on the empirical and theoretical findingseviewed above, we developed a dialogue-based interven-on. We planned the intervention to consist of eighteetings between the patient and a specially trained

ealth care professional (primarily a nurse or other healthrofessional with the relevant background) over sixonths following the stroke. The number of meetings

was based in part on previous effectiveness studies, inwhich the number of contacts varied from four to 28(Burton and Gibbon, 2005; Watkins et al., 2007), in partbased on findings from our qualitative, longitudinalstudies and in part based on pragmatic grounds (keepingthe number of meetings as low as possible while remainingsufficient to provide adequate support). Each meeting wasdesigned to last for approximately 1 h. The first meetingwas scheduled to occur as soon as possible after the stroke,usually within 4–8 weeks, and the last meeting wasscheduled to occur approximately 6 months post-stroke.The suggested times for each meeting were designed tocoincide with significant transition points and times ofincreased vulnerability in the recovery process as revealedby previous research. These included the time of dischargefrom a stroke rehabilitation unit, after the patient hadgained some experience of living with stroke at home, asthe physical recovery plateaued and when the lastingconsequences of the stroke had been fully acknowledged(Kirkevold, 2002; Kvigne et al., 2004; Eilertsen et al., 2010).

The meetings were to be conducted as informalconversations, but each meeting had a guiding topicaloutline determined by significant issues described in theresearch literature. We developed specific worksheets foreach meeting, which functioned as conversational startingpoints. The worksheets sought to encourage reflection,value clarification, goal setting and problem solving(Zoffmann, 2004), and focused on each of the topicsidentified during the literature review, including psycho-logical state/mood, daily life, activities, body, self-image,identity and social relationships. Each worksheet wascreated to invite participants to write down theirexperiences, thoughts, reflections, problems, needs andpossible solutions and actions. Together, the worksheetsmade up a workbook that was used as a pedagogical andmethodological tool intended to support the psychosocialrecovery and adjustment process of the participant andfacilitate conversations between the participant and healthcare professional. The worksheet design took the languageproblems of people with aphasia into account. We includedsimple language, pictures, colours and keywords tofacilitate reading and understanding.

Table 1 contains examples of the objectives, actions andcontent, along with the rationale and some supportiveresearch findings that were developed for each of the eightmeetings. These descriptions were developed to supportthe health care worker’s recollection of the basic theore-tical and empirical foundations of the intervention andconnect them to the objectives and actions proposed foreach meeting.

Because the literature is ambiguous with regard towhether psychosocial support is most effective whenprovided as individual one-on-one sessions or as profes-sionally facilitated peer group sessions (Smith et al., 2008),we decided to test both forms of administration. For thegroup format, the participants were to initially receive twoindividual conversations, followed by six group meetings.The focus, content and worksheets for each meeting wereotherwise planned to be identical for the two forms;however, the process had to be somewhat different bynecessity.

Table 1

Example of description of intervention meetings.

1. Meeting Place: (1) in hospital – if participant recruited from hospital, (2) at home – if participant recruited from primary care service

Purpose Activities Rationale Selected relevant research findings

Establish a

collaborative

relationship

Ensure a good

start on a 6 month

long collaborative

relationship

Support an early

start of the

recovery process

Health care worker (HCW) presents

self, the purpose of the intervention

and the ideas informing the nature of

the collaborative relationship

Invite patient to tell about what

happened in relation to the stroke to

get to know participant

For persons with aphasia, struggling

to convey their stories through

words, provide support through

other forms of expression, e.g.,

support from relatives, through

written expression, pictures,

drawings, other health care

professionals, speech therapist, etc.

Major content/elements are noted on

appropriate work sheet in the

participant’s workbook by HCW.

Work book is kept by HCW in this

phase. HCW writes own notes from

each meeting

Work sheet 1a:

Invitation to collaboration

(Zoffmann, 2004)

Work sheet 1b:

The stroke – what happened

A good relationship

is a necessary

prerequisite for

realizing the goals of

the intervention

Story telling is an

important strategy

for creating

meaning and

coherence in the

chaotic experiences

that is associated

with a stroke

Being allowed to tell

one’s story is an

important strategy

for dealing with/

coming to terms

with dramatic

experiences (Frank,

1995; Lundby,

1998)

Support from others

may contribute to

making the story

‘‘whole’’

Being hit by stroke is a dramatic situation that may be experienced

as a traumatic crisis. Several studies document experiences of

chaos, shock and uncertainty. The bodily changes in particular

appear to be scary (Kaufman 1988; Doolittle 1991, 1992; Becker,

1993)

There is a need that someone listens and contributes to an

understanding of what has happened (Byng et al., 2001). Paradiso

and Robinson (1998) discovered that during the first weeks

following the stroke twice as many women as men were

diagnosed with serious depression. The emotional changes seem

to be more apparent among women in this phase. Men seem to

focus on the physiological changes (Eilertsen, 2005; Flemming,

2002)

The need for the right amount/dosage and for repeated

information is emphasised by patients and relatives in this phase.

Information may be difficult to grasp due to shock, and cognitive

and language deficits. Ability to grasp oral and written information

may be severely impaired among persons with aphasia. Patients

and relatives request that someone tells them what is happening

and where to go to receive support and help without having to ask:

‘‘Remember I am new to this,’’ ‘‘Give me the tools’’ (Parr, 2004; Parr

et al., 2006)

Persons with aphasia often experience extreme frustration over

their lack of ability to express themsleves (Hafsteinsdottir, 1997;

Parr, 2004). Many persons with aphasia experience being ignored

and excluded from social interactions (Parr, 2004)

2. Meeting Place: (1) rehabilitation unit – 1 week before planned discharge, (2) at home – 1 week after discharge

Purpose Activities Rationale Selected relevant research findings

Person specific

knowledge about

patient is uncovered

as a common

starting point for

the collaborative

process

Identity and

self-esteem is

supported

and confirmed

Participant is mentally

prepared for the

further recovery

process when

discharged to home

Invite patient to talk

about the life that the

stroke is interfering with

Dialogue about who the

participant is, and the

values that have been

and continue to be

important and need to be

protected/promoted in

the future

Create a common

metaphor/picture of the

recovery process, taking

the metaphor of ‘‘The big

trial of strength’’ as a

point of departure

Uncover goals, plans,

thoughts and

expectations with regard

to life at home

Significant areas/topics

are noted on appropriate

work sheets in the work

book

Work sheet 2a:

Life line – who are you?

(Zoffmann, 2004)

Work sheet 2b:

Metaphor – ‘‘The big trial

of strength’’

Meaning is created through the stories people tell

about themselves. The stories will impact on what

we do, the choices and actions taken and they help

create continuity (Lundby, 1998). Reflection and

story telling about one’s life will contribute to create

meaning, structure and coherence in a chaotic

situation and thereby contribute to give direction

towards the future. Telling stories will also

contribute to conserve the identity of the patient

The consequences of a stroke are comprehensive and

diverse. The way a stroke impacts on different lives

will vary greatly depending on a wide range of

personal, relational and social/environmental

factors

The process of change is individual and

multidimensional. In order to preserve the goal of

self determination, participation, empowerment

and responsibility, person specific knowledge is a

prerequisite for a common understanding

(Zoffmann, 2004). Self-esteem and self respect are

dynamic phenomena that are influenced by

reflection, interaction and responses from others. A

stroke may impact on many different areas,

including function, sensibility, self esteem, roles,

relations, appearance and interactions

The work process, addressing the work sheets ‘‘Life

line – who are you?’’ (Zoffmann, 2004) and ‘‘The big

trial of strength’’ is part of preserving continuity in

life and tie past, present and future together. A

common metaphor can contribute to create a picture

with regard to where one is a the moment and what

may be required to achieve one’s goal

The transition from being in the hospital to

being discharged and encountering the

challenges in the home environment is

described as the real start point for

rehabilitation in several studies (Doolittle,

1992; Becker, 1993; Sisson 1998; Burton,

2000; Eilertsen, 2005)

The most common illness narratives are

those with restitution – content. These

describe illness as an inconvenient and

unpleasant condition, albeit a transitional

phase one can escape from through hard

work and a positive attitude (Frank, 1995)

Construction of narratives may create a

reality as much as refer to one. Metaphors

may impact on thoughts and actions in a

therapeutic way and be a useful tool for

collaboration between patient and therapist

(Mattingly, 1994)

Many persons with aphasia experiences

social exclusion. Many feel neglected and

not talked to in a normal (‘‘adult’’) way

(Pound, 2001). Dialogues may be changes

both in terms of content, quality and form:

From being an equal communication

partner, one is reduced to a person being

talked to, not talked with (Corneliussen et al.,

2006). Addresses are frequently directed

towards family and dialogues conducted

‘‘above the head’’ of the person with aphasia.

This may threaten the patient’s history,

identity and autonomy (Parr, 2004)

References may be provided upon request.

M. Kirkevold et al. / International Journal of Nursing Studies 49 (2012) 386–397394

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M. Kirkevold et al. / International Journal of Nursing Studies 49 (2012) 386–397 395

Most of the meetings were planned to occur after thearticipant had been discharged from hospital and hadeturned to their homes or community services. However, 1–

meetings were to be conducted while the participant wastill hospitalised. The rationale for this was twofold: tostablish contact and prepare the participant for thetervention and to support the psychosocial adjustment

rocess as early as possible to prevent the development ofsychosocial ill-being (Whyte and Mulsant, 2002). The sameealth care professional was toconduct all the meetings with

given participant to secure continuity, security, predict-bility and trust, i.e., to develop a therapeutic relationship

inckley, 2010). The intervention was designed to supple-ent other rehabilitation services provided to the partici-

ant, and to be conducted in collaboration with the rest ofe participant’s treatment team.

.1. Critical review and consensus building

The purpose of this model development study was tonsure an empirically, theoretically and practically soundtervention. Although the above steps helped us develop

n intervention based on a broad range of empirical andeoretical evidence, the practical soundness of thetervention was less obvious. To strengthen this aspect

f the development process, we invited a wide range ofxperts to critically review the proposed intervention (seeox 2 for details). These discussions helped us specify andlan the details of the initial testing of the intervention andevise the content and layout of the worksheets and theducational instructions and program for the healthrofessionals who would conduct the intervention. Ques-ons such as who would be recruited to such antervention, what the organisational placement of thetervention would be and how it would be linked to other

ervices were raised during these focus groups, helping usnticipate some of the challenging issues we would have toolve when moving into the exploratory trial phase. Basedn the critical review and practical advice provided by thexpert groups, we finalised the intervention protocol andoved to the trial, the results of which will be presented as

separate paper.

. Discussion

In this paper, we have described the development of aeoretically and empirically informed complex nursingtervention aimed at promoting psychosocial well-being

fter stroke. The basis for this study was the finding from theterature that most previous intervention studies addres-ing psychosocial needs and problems have generally hadodest results (Hackett et al., 2008a,b; Knapp et al., 2000;urray et al., 2003; Smith et al., 2008; Redfern et al., 2006).

urthermore, it has been observed repeatedly that inade-uate attention has been directed towards identifying andxplaining the underlying theoretical mechanisms assumed

effect change (Smith et al., 2008; Redfern et al., 2006).The psychosocial consequences of stroke vary from mild

tress and general psychosocial ill-being to serious pro-lems, such as post-stroke depression and anxiety (Kou-enhoven et al., 2011; Whyte and Mulsant, 2002). There is

increasing consensus that more concerted efforts areneeded to address the psychosocial consequences of stroke.Our literature review highlighted the importance of payingclose attention to the mechanisms that may facilitatepsychosocial well-being. The intervention presented here isin line with one of the two major theories of post-strokedepression and anxiety, namely the psychosocial mechan-ism, which suggests that psychosocial problems occur as aresult of overwhelming stress, emotional overload andineffective coping strategies for dealing with the conse-quences of stroke (Whyte and Mulsant, 2002). According toWhyte and Mulsant (2002), this mechanism is particularlyrelevant to late onset depression, which is less likely to leadto spontaneous remission. Our intervention is aimed atpreventing serious psychosocial problems by strengtheningthe participants’ own, natural coping strategies. We assumethat through such a health-promoting approach, strokesurvivors might be supported in reducing their stress andemotional overload and increasing their sense of compre-hensibility, manageability and meaning.

The literature emphasises that specific goals and out-comes must be targeted in order to succeed in developingeffective psychosocial interventions. We aim to promotepsychosocial well-being, which we operationalised toinclude a general feeling of positive affect, engagement inmeaningful activities, good social relations and a positiveself-image. These outcomes are threatened by the con-sequences of stroke, and there is increasing evidence thatstroke survivors may need support to regain psychosocialwell-being (Murray et al., 2003; Salter et al., 2008).

The timing and intensity of the psychosocial interven-tions are frequently assumed to explain the lack ofsignificant outcomes in clinical trials (Knapp et al.,2000). However, the literature is unclear with regard tothis issue. Interventions vary greatly in terms of timing,intensity and duration (Knapp et al., 2000; Burton andGibbon, 2005; Watkins et al., 2007). In our intervention,the timing was guided primarily by the results ofqualitative, longitudinal studies, which indicate thattransition periods are particularly vulnerable times forstroke survivors. Furthermore, we included pragmaticdeliberations concerning the acceptability of an additionalpsychosocial intervention within a hard-pressed health-care service. We opted for eight meetings during the firstsix months, which we judged to be a realistic compromisebetween the ideal and pragmatically possible. However,in-depth evaluation of the intervention will explorewhether this is adequate or not.

Systematic reviews have found that the active involve-ment of patients and carers is paramount for successfulpsychosocial outcomes (Smith et al., 2008). We sought tomeet this requirement by inviting participants to tell theirstories in their own words, by actively encouraging them tochoose which issues to focus on in the dialogues and whichgoals to work towards and by supporting their own initiativeand problem-solving and coping skills. We believe that thisapproach facilitates the development of individually rele-vant coping skills by building on the values and goals ofparticular importance to the individual participant.

In this study, we decided to primarily focus on strokesurvivors but encouraged the stroke survivors themselves

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M. Kirkevold et al. / International Journal of Nursing Studies 49 (2012) 386–397396

invite informal carer(s) to some (or all) of the meetings they deemed appropriate. The rationale behind thiscision was to promote personal control in the strokervivor and keep the intervention at a manageable level ofmplexity to be able to evaluate the effectiveness of thefferent components of the intervention. We believe thate next logical step will be to extend the intervention toore systematically involve carers, should the initialsults warrant further development in this direction.

In our work, we were inspired by the MRC frameworkampbell et al., 2000; Craig et al., 2008), which wasiginally developed to support intervention development

primary health care settings. In line with Maindal et al.010), we found the MRC framework helpful in clarifyingues to take into account when developing our psycho-cial intervention. In particular, we found that payingreful attention to a wide range of available knowledgevidence), including findings from qualitative studies oftient experiences and the practical experiences oftients, family members and clinicians, helped to clarifysential issues that needed addressing during the inter-ntion. The many thorough reviews of previous inter-ntions available also helped guide the developmentocess, particularly by highlighting elements andproaches that have been found effective and identifyingeas in need of further specification.

Although this systematic way of developing interven-ns is by no means new within nursing (Sidani andaden, 1998), few frameworks have been available tosist in the development process thus far. One advantage

applying the MRC framework in intervention develop-ent is that it is used extensively in other disciplines,ereby facilitating communication and learning acrosssciplinary boundaries (Forbes, 2009; Campbell et al.,00; Craig et al., 2008). However, other frameworks areo available, such as intervention mapping (Bartholo-

ew et al., 1998; Kok et al., 2004), and nurse researcherse advised to review the various approaches when

barking on an intervention development study.This study had several limitations. It describes the

velopment of an empirically and theoretically informedrsing intervention. However, no empirical data has been

ported to support its merits thus far. Furthermore, weve relied heavily on systematic reviews of empiricaldies to underpin the intervention. Although these

views have been conducted using agreed-upon methodsr systematic reviews, they still represent secondaryerature. Furthermore, many studies, particularly quali-tive and non-experimental studies, have been excludedm these reviews. We have compensated for this

eakness by conducting a separate review of qualitativedies and building on our own program of qualitative

search regarding stroke recovery. We believe that, takengether, the applied empirical and theoretical literatureves sufficient support for the intervention presented inis paper. In the continuation of this study, which isrrently underway, we explore the impact and effects ofe intervention in a multiple case study. We believe thatis stepwise approach to developing and testing complexrsing interventions can facilitate the identification of the

6. Conclusion

Using the framework for developing and evaluatingcomplex interventions recommended by the UK MedicalResearch Council, this study has developed a complexpsychosocial intervention aimed at promoting psychoso-cial well-being through an improved ability to cope withstress, reduced emotional overload and increased com-prehensibility, manageability and meaning. The nextphase of this study, the intervention itself, which combinesa narrative approach and guided self-determination, iscurrently being tested in an exploratory trial to bepresented as a separate paper.

Acknowledgements

We acknowledge the important contributions ofpatients, health care professions and experts participatingin the development of the intervention. This project hasbeen financially supported by the Norwegian ExtraFoun-dation for Health and Rehabilitation through EXTRA funds,the Norwegian Aphasia association and The NorwegianWomen’s Public Health Association.

Conflict of interest: None.Funding: This study was supported by grants from the

Norwegian Extra Foundation for Health and Rehabilitationand Norwegian Women’s Medical Association. In addition,the study was supported by University of Oslo andHedmark University College.

Ethical approval: None.

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