foumal oJAdvanced Nursing, 1995,21,1201-1210

The process of empowerment in mothers ofchronically ill children

Cheryl H Gibson PhD RNProfessor, Faculty of Nursmg, University of New Brunswick, POBox 4400, Fredencton,New Brunswick E3B 5A3, Ganada

Accepted for publication 2 August 1994

GIBSON C H (1995) Journal of Advanced Nursmg 21,1201-1210The process of empowerment in mothers of chronically ill childrenAs a result of advances m scientific knowledge and technology, the number ofchildren living with chronic illness is ever increasing The burden ofresponsibility for the care of these children falls increasingly on the mvolvedparents and, particularly, on mothers In spite of the challenges that chromechildhood illness presents, many families are able to adapt to their situationand develop a sense of control over their lives A sense of control has beenassociated with the notion of empowerment Following a theoretical analysis,empowerment was conceptualized as a social process of recognizing, promotingand enhancing people's abilities to meet their own needs, solve their ownproblems, and mobilize the necessary resources in order to feel in control oftheir own lives To understand the concept of empowerment from an empincalperspective, a fieldwork study was undertaken to describe the process ofempowerment as it pertains to mothers of chronically ill children This paperpresents the process of empowerment that occurred in these mothers Fourcomponents of the process of empowerment emerged discovering reality,critical reflection, taking charge, and holding on As a result of the study,empowerment was reconceptualized as largely a personal process m whichindividuals developed and employed the necessary knowledge, competenceand confidence for making their voices heard Participatory competence — theability to be heard by those m power — was the outcome of this processAlthough the unique finding m this study suggests that the process ofempowerment was largely mtrapersonal, there was a relational element in theprocess Clearly, the mtrapersonal and interpersonal processes of empowermentare intertwined

INTRODUCTION: HYBRID MODEL ^^^^"^ ""'^^^ " '^^f ^̂ ^ theoretical ^alysis with empin-cal observation and is composed of three phases

The concept of empowerment has not been empmcally In phase 1, the imtial, theoretical phase, the concept ofstudied within a nursing context Because it refiects a pro- empowerment was searched for in the literature and ana-cess, it IS difficult to operationalize and no single measure lysed for meanmg and measurement In the second phase,can capture it adequately (Rappaport 1984) Using the which overlapped with the first, field research methodshybrid model of concept development (Schwartz-Barcott (participant observation and m-depth mterviewing) were& Kim 1986, 1993), a fieldwork study was conducted to employed to collect qualitative data for further analysis offurther refine the concept of empowerment m relation to the concept In phase 2, a fieldwork site was chosen, majormothers of chronically ill children (Gibson 1993) Tbe questions to guide the research were formulated, cases

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were selected, and data were collected and analysedPhase 3 interfaced the theoretical analysis with insightsgained from empincal observations dunng the fieldworkphase (Schwartz-Barcott & Kim 1986)

Setting

Phase 2 ofthe study took place over a 12-month penod ona neurological unit m a 350-bed children's hospital in thenorth-eastern part of the United States of AmencaParticipant observation and ln-depth interviewingmethods were employed Participant observation is especi-ally applicable for exploratory and descnptive studies thatexamine processes, relationships among people, continuit-ies and pattems over time, and the immediate sociocultu-ral context withm which daily expenence is grounded Aholistic exammation ofthe phenomenon is stressed as wellas the importance of the context, setting and participants'frame of reference (Keith 1988, Lofland & Lofland 1984)

The goal of the in-depth interviews was to elicit theparticipants' interpretations of their expenence by captur-ing how the world is perceived, understood and experi-enced by those whose lives are a part of it The use ofmterviewmg vnth observation enhanced validity as itassured that the truth m observations was checked vnththe active questioning of the interview situation and viceversa (Chemtz & Swanson 1986, Schatzman & Stiauss1973) Participant observation also provided opportunitiesfor prolonged contact with participants to validate aspectsofthe data and ensure the ngour ofthe study (Sandelowskietal 1989)

Sample

The criteria for sample selection included parents who hada child with a chronic neurological condition and whowere considered by the professional staff on the unit tohave a sense of contiol or degree of mastery over theirsituation However, identifying potential parents to par-ticipate m the study was a real challenge as many of thechildren's health care needs were very complex, the socialissues for many of the families were overwhelming, andthe parents clearly were very stressed

The final sample consisted of 12 mothers, ranging in agefrom 25 to 49 years, of neurologically challenged children,who ranged in age from 11 months to 16 years The limi-tation with this non-probabilify or judgement sampling isthat It allows no way of knowing precisely the degree towhich the sample corresponded to the universe it rep-resents However, the focus of the study was to look atresponse pattems rather than the way behavioural traitsor special mdividual charactenstics are distnbuted m aknown universe whose systematic nature is either takenfor granted or ignored (Homgmann 1970) Therefore, thesample was justified as appropnate to search for pattems

that occur m consideration of empowerment m mothersof neurologically challenged children

Most of the mothers were interviewed several timesTherefore, multiple interviews had the advantage ofenhancing optimal understandmg and saturation as wellas establishing validify m the interpretations of data analy-sis (Strauss & Corbm 1991)

Data analysis

The data were analysed in relation to the research ques-tions and proceeded simultaneously vnth data collectionAll elements of data — tianscnbed interviews, field notesand memos — were read and re-read so that the researcherwas fully immersed m and intimate with the data pnor tointensive analysis Each interview was examined m detailand coded mdependently Initially, coding labels werechosen to reflect the actual words of the participants toavoid premature abstiaction and distortion of meaningCategones were created from the interpretations of whatthe participants said The antecedents, context, contin-gencies and consequences were considered m relation tothe categones

Memoranda were vmtten m relation to vanous themesin the data and enabled the researcher to move from thedata to a conceptual level (Miles & Huberman 1984) AsAamodt (1991) noted, this tiansformation of data from onelevel of analysis to another required a sense of awarenessand an mtmtive sense of the whole of the data

The themes reflected only the content of the interviewsTo capture the process of empowerment, the interviewswere re-vn^tten m a chronological sequence The mothers'stories were written m a descriptive manner with little, ifany, interpretation to avoid premature interpretation andexplanation (Schwartz-Barcott & Kim 1986) The storiescaptured the mothers' feelings, responses, pattems andperspectives (Taylor & Bogdan 1984)

Following the hybnd model approach of concept devel-opment, a model case was selected that best representedthe process of empowerment Subsequently, each inter-view was examined m relation to the model caseand embellished aspects of the process Although eachmother's expenence was unique, there were remarkablyconsistent pattems During data analysis, there was anintense and mtimate interplay among the researcher, themothers, the data and the emergence of the process ofempowerment As well, theoretical notes and memorandawere studied and integrated into the analysis Definitionsof empowerment and its outcome were refined Thepre-condition, influencing factors and consequences ofempowerment were examined An analytic descnption ofthe process of empowerment follows

1202 © 1995 Blackwell Science Ltd, Joumal of Advanced Nursing, 21,1201-1210

Empowerment in mothers

THE PROCESS OF EMPOWERMENT

A conceptual model of the process of empowerment mmothers of chromcally ill children is visually depicted mFigure 1 The model reveals the mothers' commitment to,bond with and love for their child, which motivated andsustamed the process of empowerment Frustration was apowerful force that permeated the process and was a cnti-cal factor in helping the mothers to discover realityFurthermore, frustration evoked ongoing cycles of cnticalreflection which subsequently enabled the mothers to takecharge of their situation and, then, to hold on to theirsense of power — even dunng changmg circumstancesParticipatory competence was the outcome of the process

Altbougb the process of empowerment is presented ma sequential manner m this paper, reality as it is lived andperceived is not entirely captured since, in the humanexperience, multiple events and processes occur simul-taneously The process of empowerment is iterative andinteractive rather than linear m development The compo-nents of the process of empowerment are interdependentand overlapping However, this dynamic process can beanalysed more clearly when considered sequentially —one component at a time Gonsequently, the presentationof the process of empowerment which follows is morecleeirly delmeated with discrete phases

Precondition of the process of empowerment

As noted, the notion of empowerment was studied mmothers of neurologically challenged children Althoughthe children vaned in the age at which they were diag-nosed, the majority were diagnosed withm the first 6months of life In all cases, the mother had developed a

strong bond with her child Tbe mothers' deep love of,real commitment to, and responsibihty for their child, toensure that their child received the best care possible,motivated and sustamed the process of empowerment

COMPONENTS OF THE PROCESS OFEMPOWERMENT

Discovering reality, diagnosis and post-diagnosis

The mothers' responses to the diagnosis of a chromeneurological problem m their child were enigmatic In thefirst phase of the process of empowerment, 'discovermgreality', the mothers responded emotionally, cogmtivelyand behaviourally

Emotional responsesMany of the mothers realized that tbere was sometbmgwrong with their child Although the diagnosis legitimatedtheir concems, they, nevertbeless, were bewildered,shocked and confused, as well as frightened, anxious andangry Because they did not believe or could not compre-hend the implications of the diagnosis, they were unableto grasp the reality of the diagnosis and envision the futurerealistically The ramifications of a long-term health prob-lem m their child were mcomprebensible Nevertheless,tbe diagnosis initiated a gnef response m the mothers

When the child was diagnosed as an infant, mothersfound it difficult to believe the negative realities that thechild's health problem entailed They believed it was tooearly to predict a child's potential when the mfant wasnaturally helpless and dependent When the child exhib-ited delays m development, they hoped that the child was'slow' and would 'catch up' Tbey were dnven by a sense

Figure 1 A conceptual modeloftbe process ofempowerment m motbers ofcbromcally ill cbildren

Influencing factors

Beliefs Determination

Values ExpenenceSocial support

Commitment

Purpose and meaningin life

Seif-<leveiopment

Satisfaction

Mastery

Rejection

Responsibility overtoad

t e ^ support

Precondition Process Outcome Consequences

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of hope and optimism that their situabon would be differ-ent or would improve Two mothers admitted to being verysceptical and were determined to prove to the doctors thatthey were wrong

Marta's words best capture the mynad of emobonalresponses of many of the mothers She was the mother ofan 11-year-old boy who was severely retarded as a conse-quence of viral encephalibs contracted m the neonatalpenod She related

It was not until Peter was 2 years old tbat reality finally hit Tbatdefinitely was tbe worst time I was depressed I cried a lot Infact, my older son drew a picture of me and, in tbe picture, I wascrying I realized, tben, all be saw bis motber do was cry I feltenvy for tbe first time in my life I avoided people witb nonnalcbildren I felt it was just not fair Tbis was an awful feeling forme as I never knew envy before I bated bow I was feelmg I wasreal angry and jealous

Although al) of the mothers descnbed a feeling ofemobonal turmoil and upset in the early months followingthe diagnosis, they fully mvested themselves m canng fortheir child Most of the mothers did not dwell on theirgnef responses Yet, the mothers experienced a range offeehngs as part of the process of acceptmg the situabonand realizing that crucial aspects of the situabon could notbe changed

Cognitive responses the quest for informationFollowing the diagnosis, the mothers m this study felt veryunsure and uncertain Durmg that time they were mostreceptive to outside help They embarked upon a quest forinformation m order to understand their situabon Theysought out as much mformabon as possible — from books,pamphlets, doctors, nurses or other mothers m similarsituabons

In the early stages they believed everjfthmg that was toldto them was the truth They relied on health care pro-fessionals to make sound decisions The physician, m par-ticular, was considered to be the ulbmate expert Therewas a sbong sense of trust m people who provided careto the child They expected that health care professionalswould make the nght decisions and would be available tothem Initially, they were more recipients of care ratherthan active parbcipants in care Because of their unfam-lharity with and inexpenence of the situabon, externalsources of mformabon were authontabve

The mothers always had a sbong need for informabon,to explain the child's aberrant health status, plans andrabonale for care, and what they could do to help the childEven when the informabon was distressing, the mothersfelt a degree of comfort m knowing what was happemngThroughout the mterviews many mothers recalled theiranxiety and fiiistrabon when they did not understandwhat was happening

Behavioural responsesMothers assumed responsibility for the child's health and,in so doing, they did everything possible for their childMany of the mothers reported that m dealing with theirsituabon they merely were doing what was required Onemother simply said 'You just deal with thmgs as theycome' In the mothers' mmds, there was no choice Whenapplauded for their efforts, they simply responded thatthey were doing the only thing that they could do Therewas no other option for the mother who loved and desiredthe best for her child Simply not canng did not occur toher The mother's own feelings of sadness, remorse andanger were channelled mto an atbtude that was describedby many mothers as 'makmg the best of the situabon asthere is nothing else I can do' In so doing, the motherslearned to see the posibve aspects of their situabon Betty,the mother of a 16-year-old boy with neurofibromatosiswho sustained a devastatmg sboke followmg surgery,commented

I really believe tbat if somebody bas a positive attitude, tbat if it'sgoing to go one way or tbe otber, if tbera's a cboice tbere, andtbey are positive about it, I really tbink you know, it's going tobelp tbem in tbe long run

The mothers m this study did not think a lot about howthey managed Anna, a mother of a 7-year-old boy with arecurrent brain tumour, related 'You just don't thmk aboutthese things' In a similar observabon, Benner & Wrubel(1989) have noted that coping strategies are seldom deve)-oped m a purely deliberabve and conscious mannerPeople may have very little access to or understandmg oftheir coping pracbces Coping is their way of being m theworld and understanding themselves

Through canng for the child, mothers learned abouttheu- child They discovered the unique personalitycharactensbcs of the child (parbcularly, if the child wasdiagnosed as an infant) and were able to discern the effectof the illness or chronic health condibon on the childThey acbvely watched the child's responses and theynoted the child's pattems and variabons

Mothers constantly monitored the child Most of themothers recorded informabon m a joumal or on a calendarto keep a record of events the child experienced, progress,beabnent and responses Consequently, they were verycognizant of any change m then- child They were quicklyable to discern problems and interpret symptoms and,possibly, recognized solubons that would work for theirchild Clearly, mothers knew theu- child This knowledgeof the child mtegrated the biopsychosocial aspects of thechild as well as the totality of all ofthe child's expenenceThe mother's knowledge was not only empincal but alsomtuibve

As noted in the findings, mibally, the mothers wereunsure and uncertain Because the situabon was unfam-iliar to them, they had nothing with which to compare

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Empowerment m mothers

their assessments and expenences Some mothers, mtmt-lvely, felt all was not well with their child — only to havetheir concerns mimmized Feedback from doctors andeven family members led mothers to believe that they wereover-protective or overly concemed Because their con-cerns were not legitimated, they felt frustiated, confusedand uncertain

The role of frustration in the process ofempowerment

Frustration was a predommant theme m all of the inter-views Mothers encountered numerous fr'ustiations withinthe family, with the health care system, as well as vnthinthemselves

Frustrations withm the family mothers carry theburdenA dynamic developed in family relationships whereby themajonfy of caretaking activities were assumed by themothers Most of the mothers reported the fiiistiation feltbecause the child's health care needs were pnmarily theirresponsibilify Because the fathers did not have the sameinvestment in terms of the caretaking responsibilities forthe child, their confidence and expertise m relation to thechild's chrome health problem did not develop commen-surately with the mothers' Therefore, the burden of thechild's health care needs fell on the mothers The mother,even if she was working outside the home, took the childto the various appointments with doctors and stayed withthe child dunng hospitalization Many indicated that theydid not receive the support they needed from theirspouses

The mothers were annoyed when their husbands did notwant to listen to them while they talked about the child'shealth problem and the friistiations with the health caresystem They speculated that their husbands did not liketo see them upset or else they wanted to pacify them Twomothers noted that all they wanted was an opportunity totalk They did not want a solution from their husbands —they just wanted an opportumfy to vent their feelings andbe heard When the mothers' attempts to share their inner-most feelmgs were met by evaluation, reassurance or mis-understanding, they felt very much sdone vnth their plightAnna, the mother of a 6-year-old boy vnth a recurrent braintumour, captured it best

Ninety-five per cent of the time, things are fine but I do get frus-trated and annoyed at hun I find it finistrating to try to tell himthings emd he says 'Don't worry, everj^mg will be fine' It's justlike I don't have anything to worry about He does not recognizemy feelings and I find that so firustrating

Alama, the mother of a severely handicapped 13-year-old girl, further explained

[My boyfriend] knows now to listen to me He knows all I needto do IS vent He used to give me advice and he sensed I did notlike that so he said to me at one time 'You don't want me to giveyou any advice, do you'' and I said 'No, all I want you to do islet me vent'

Clearly, the child's health problems created tensionbetween many of the mothers and fathers

Two of the mothers were divorced Both stated theirmamages would have ended ultimately, but the presenceof the chrome health prohlem in their child acceleratedthe demise of the marriage Yet, both mothers werecurrently supported by men who willingly shared theresponsibility of care for the child with the chronic healthprohlem They were able to discuss the situation withthese men and felt that they were being listened to as wellas supported Lack of support and understanding fromfamily members for many of the mothers was both frustrat-ing and disappointing

Frustrations with the health care systemThrough the course of caring for the child, negativechanges in the child's health status elicited concerns oranxieties in the mothers Because of their concem anduncertainfy as to what to do, they sought help from healthcare professionals Mothers expenenced stiong feelings offrustiation, particularly vnth physiciems, when their con-cerns were minimized, negated or ignored

Mothers descnbed many kmds of irritations related tohealthcare Waiting was frustiating waiting for the doctorsor nurses to attend to the child — m the emergency depart-ment, m the hospital unit, or in the clmics, waiting foranswers to questions, waiting for the child to heal or pro-gress, or waiting for the child to have seizures when thiswas part of the diagnostic process Travelling m and outof a large, congested cify added to aggravations Repeatingthe child's health history over and over as well as educat-ing new residents were very irritating

Also frustiating was not having answers to solve thechild's health problem Another dissatisfaction was theconflictmg opinions of different doctors so that mothersfelt uncertain as to what to do Other aggravations relatedto fragmented specialization What was also very difficultwas not knovnng or understanding what was happeningto the child

As well, mothers expenenced frustrations when pre-scnbed medications and treatments did not work as antici-pated Finally, another disappointment for one mother wasthat tiaditional medical care could not provide any hopefor her child

Frustrations with selfAdditionally, mothers expenenced frustrations with them-selves when their customary ways of copmg no longerwere effective One mother noted that she had to stop

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focusu^ on herself — her sadness, envy and anger — anddeal with her situabon and make the best of what shecould not change

Clearly, finistration was a predommant theme m all ofthe interviews The frequency, mtensity and durabon ofvanous frustrations evoked ongoing cycles of cnticalrefiecbon which ultimately enabled the mothers todevelop a sense of personal power and helped them toface reality

Critical reflection

The escalabon of frustrabons forced the mothers to evalu-ate themselves and examme their situabon cnticallyUnquesbonably, their self-mterests were threatenedFrustrabon, clearly, was a catalyst for growth and changeand mibated the empowerment process

Meanwhile, mothers developed confidence in theirknowledge of and abihbes to care for the child Theyeventually came to the realizabon that they loiew theirchild better than anyone else They fully exammedtheu- situabon to understand and determine wherein theirdifficulbes lay and what they could do about them, interms of their atbtudes and behaviours Throughout theprocess, they evaluated what Wcis important for the childas well as for the family They established pnonbes asthey became acutely aware of their values, goals, wantsand needs As one mother reflected

If anytbing good bas come out of tbis, I smell tbe roses a lot moreI was a workabohc before and made time for tbe kids at tbe endof tbe day Now tbe kids come first Tbe work is always tbere Ispend more time witb my family — tbey come first

The process of cnbcal refiecbon was necessary for themto be able to take charge of their situabon in a proactivemanner and to develop a sense of personal power Throughthe process of cribcal refiecbon, mothers became aware oftheir sbengths, abilibes and resources

All of the mothers employed a posibve style of thmkingby making downward compansons which enabled themto see their own situabon more favourably All of themothers pomted out how the hospital expenence madethem realize how much worse their own situabon couldbe A focus on the posibve aspects of the situabon did notminimize in any way what the mothers lived with Yet,their comfort and familianty with their own situabonmade the situabons of others seem worse Furthermore,mothers learned to appreciate the inherent goodnesswithin their situabon Mothers converted the energy bomsuch negabve emobons as fixistrabon and anger mto posi-bve energy and problem-solvmg to meike their situabonbetter All of the mothers noted how much they hadlearned to appreciate what they had and not to take aspectsof life for granted {m3̂ more

Through the process of cnbcal refiecbon, the mothers

also searched for a purpose or found meanmg m then-plight One mother explained

I know Pater bas taught me wbat is most important I see parentshavmg sucb great expectations and demands of tbeir cbildren Iwant to say 'Just enjoy your children for wbat they are'

Younger (1991) discovered, m acceptmg the reality ofthe situabon, individuals reorganize the meamng of lifeFurthermore, they finally realize that events cannot bechanged Therefore, they relmquish their hopeless expec-tabons and become free from longmg for what has beenlost They accept what cannot be changed and make aconscious decision to move forward

Nevertheless, the mothers realized that, inevitably, therewould be happenings that were not planned which mustbe managed Diane, the mother of an 18-month-old boywith myelomenigocele, s£ud 'I'm leammg to realize thatgetbng upset doesn't change anythmg' The motherslearned to control their emobonal responses, to feel lessstressed and, therefore, to conserve energy They acknowl-edged that, from their travails, they were sbonger, moreefficacious and more purposeful Therefore, through cyclesof cnbcal refiecbon, mothers developed an mcreasmgawareness of their sbengths as well as the confidence tobe asserbve and to act upon then- needs Dunng the pro-cess, there seemed to be either a dramabc turning point ora demarcabon that had some significance to the motherswhich triggered a conscious response of their takmg holdof theur situabon and then taking charge

Taking charge

Once the mothers were aware of their strengths and wereconfident m their Imowledge of their child, they tookcharge of the situabon No longer did the mothers subordi-nate their perspectives and judgements to those of othersAs Belenky et al (1986) contend, the onentabon to auth-ority shifts from external to internal as women learn tohsten to their own voice The mothers learned to assertthemselves and, m so doing, their growmg sense of confi-dence was remforced

Taking charge entailed (a) advocating for the child,(b) leanung the ropes to mteract efficiently with the healthcare system, (c) learning to persist to get the attenbon theyneeded for the child, (d) negobabng with health care pro-fessionals so that opunons and requests were heard, smd(e) establishing a partnership in which there was mutualrespect and open commumcabon between the health careprofessionals and the mothers as well as commitment to acommon goal

Advocating for the childMothers saw themselves as an advocate for their childBecause their child was so dependent upon them for care.

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Empowerment in mothers

the mothers felt compelled to speak on their child's behalfbecause they reahzed that no one else would

Leaming the ropesOne mother explamed 'It's a matter of leammg the ropes'to deal efficiently with the health care system Her18-month-old child with myelomemngocele expenencednme surgical operations smce his birth She noted 'I'velearned a lot and I'm leammg to get it nght' One motherof a child with a complex seizure disorder learned to callthe doctor or the nurse practitioner or to alert the epilepsyteam that her child was commg mto the emergency depart-ment In so domg, she did not have to wait for hours andrecite the child's history to a resident or a doctor who notonly was unfamiliar with the child but who may not under-stand the uniqueness of the child's regimen

Learning to persistThe mothers relentlessly continued to assert themselvesand to advocate for their child Many of the motherslearned to wnte dov«i their questions so that they wereassured of getting the information they wanted Some alsorequested another medical opinion One young mother ofa 5-month-old baby met with the departmental chief to getthe action she needed for medical care for her child Somemothers enlisted the support of nurses because theybelieved that if the doctors would not listen to them theywould listen to the nurses With time, even the motherswho considered themselves to be shy, became morecomfortable vnth, and assertive m, their mteractions withthe doctors Tbere was a consistent tbeme of 'never givmgup' The mothers persevered to get the best care they couldfor their child

Driving negotiation m the hospital settingAll of the motbers reported that the hospital expenencewas very stressful Mothers found it very difficult to havea sense of power m a setting where the practice model washierarchical and medical needs were placed as primal Yet,the mothers, m their own way, initiated changes m theirmteractions with health care professionals and mostbecame adept at makmg their voices heard Clearly, themothers were the drivmg force for negotiations with healthcare professionals Because they firmly beheved that theyknew their child the best, they did not surrender theirpower passively to physicians or to anyone else

Establishing partnershipsMothers wanted a partnersbip with the health care team— m terms of being an associate, a collaborator and anactive participant m the child's care Although mothersneeded up-to-date mformation concermng the healthstatus of the child, they wanted respect and acknowledge-ment for their assessments, opmions and suggestions mterms of the child's health problem They wanted their

abilities and expertise to be recognized so that they couldbe a full participant m their child's health care The frus-trations the mothers repeatedly acknowledged related tonot bemg heard

Contingent on estabhshmg partnerships was the needfor each party to acknowledge the expertise of the otherThe mothers acknowledged the expertise of the doctorsand other health care professionals However, it was notalways apparent that the doctors respected the mother'sexpertise in knowing her child

Therefore, integral to the process of empowerment wasbemg able to achieve a goal in co-operation with othersKeys to successful partnerships were mutual resjiect andopen communication between the mother and health careprofessional The mothers m this study denved a sense ofsatisfaction when there was a mutual exchange with healthcare professionals and a commitment to a common goalAlaina, the mother of a severely reteirded 13-year-olddaughter, stated it well

Working as a team is best — tbe doctor knows tbe diagnosis buttbe motber knows tbe cbild Botb perspectives are important ItIS important tbat tbe team is open and receptive to ideas Workingas a team really makes a difference I bave every confidence tbatmy cbild would get tbe care sbe needs but I believe sbe wouldbe in tbe bospital longer witbout my input

Nevertheless, the mothers acknowledged that they didnot want total control of the situation In situations whichwere unfamiliar to them, they relied on the expertise ofthe health care professionals Yet they wanted opportunit-ies for discussion so that they were fully aware of tbe situ-ation What they also wanted was recognition for theirinsights, suggestions, abilities and skills m canng for theirchild Inotherwords, they wanted to be beard Alamasaidit best

I like my opinion to be listened to I don't really want total controlbut I want tbe doctors and nurses to be open to listen to me

Holding on

The final phase of the process of empowerment was 'hold-ing on' As a result of the mothers' awareness of theirstrengths, competencies and capabilities, they were ableto maintaun their own sense of power even durmg chang-ing circumstances Although tbe mothers experienced feel-ings of disappomtment, frustration and anger, tbeir coreabilities endured In 'holding on', the mothers developeda sense of personal control m terms of regulatmg their ownresponses Through ongoing cycles of cntical refiection,the mothers became cogmzant of the d)mamics within situ-ations and, therefore, they tned to be imderstandmg andpatient when outcomes were not what they anticipatedConsequently, they continued to persist with their effortsto attam a desired outcome, established new time fr'ames

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m which to evaluate the situation, or else developedalternative stiategies

All ofthe mothers were remarkable m their perseveranceand persistence Those mothers who were more able tohold on to their power expenenced a sense of satisfactionfrom knowing that they were doing all they could Othermothers were dependent on being heard m order to holdon to their power

Many ofthe mothers were involved with other activities,such as work, school, recreation, or support groups Suchinvolvement provided a balance m their lives that renewedtheir energies to deal with their situation and sustainedtheir abilify to 'hold on'

OUTCOME OF THE PROCESS OrEMPOWERMENT

The phases of discovenng realify, cntical reflection, tsikingcharge and holding on indicate that the process ofempowerment was largely mtiapersonal The mothersdeveloped and employed the necessary knowledge, com-petence and confidence for making their voices heard Inbecommg empowered, mothers developed confldence mtheir knowledge of their child and m their decision-makmg for their child Decisions were consistent withtheir goals and their ovm sense of meaning Mothersbecame a voice of authonfy and were able to collaborateeffectively with health care professionals Thus, themothers had a personal sense of taking charge and anabilify to be assertive and to take action consistent vnththeir values, beliefs, goals and needs

The mothers were empowered when they were fullparticipants m their child's care — in working towardsmutually agreed upon goals for their child with health careprofessionals — and when they were heard The mothersdid not want to dictate to health care professionals whatshould be done for the child They also did not want thephysicians to agree with their requests or suggestions vnth-out some confirmatory dialogue What these mothersneeded most m order to be empowered was to be heardby the health care professionals

Therefore, the outcome of the process of empowermentm this group of mothers was conceptualized using Kieffer's(1984) language of participatory competence Kiefferdefined particijtatory competence as an abidmg set of com-mitments and capabilities In this study, Kieffer's defi-nition was refined and redefined as the abilify to be heardby those m power The group of mothers in this study whoattained participatory competence, (a) had developedsound knowledge of their child, (b) were competent incarmg for their child and in making decisions consistentwith what they knew of the child, and (c) had developedconfidence m commumcating what was best for the child

Although the three indicators reflect personal com-petence, there is a relational aspect of empowerment m

bemg heard In bemg heard, the mothers perceived thathealth care professionals were receptive and responsive towhat they had to say and that their expertise was recog-nized Mothers who attained participatory competencewere associates, collaborators and participants m theuchild's care

The mothers' abilify to hold on to their own sense ofpower was not contingent on an attainment of partici-patory competence Mothers could still have a sense ofpersonal power even when they were not heard However,the mothers who were the most empowered attainedparticipatory competence Therefore, the relational orinterpersonal aspect of empowerment provided greaterempowenng capability On the other hand, one motherattained participatory competence vnthout demonstiatmga sense of personal competence Yet, in being heard, thismother was provided vnth an opportunity for dialoguewhich ultimately enhanced the care of her child

CONSEQUENCES OF THE PROCESS OFEMPOWERMENT

For all ofthe mothers in the study, empowerment was verymuch a leaming process Self-development was enhancedas the mothers tapped mto then- stiengths and capabihtiesMothers gained new competencies, felt stionger andbecame more efficacious In essence, they had gained asense of mastery of their situation Clearly, the mothersexpenenced transformative chemge withm themselvesThe mothers found meaning withm their experiences Theabilify to find meaning in their situation enabled themothers to have a positive orientation towards life Theyintegrated their experiences — their disappointments,shattered dreams and successes — to find a sense of pur-pose m them and to reach out to help others

Not only did the mothers seek fulfilment in helpingothers m similar circumstances, they also channelled theirenergies mto school, work or recreation In investing mother activities and relationships, the mothers foundalternative sources of satisfaction to make up for what theyhad lost The mothers were remarkable in their abilities totianscend their difficulties and to move forward Most ofthe mothers were able to plan for the future All of themothers derived a sense of satisfaction when they becamefully aware of their personal competencies and, even more,when they were heard

Nevertheless, the process of empowerment resulted insome negative consequences Negative consequences ofparticipatory competence occurred even when the mothersfelt heard At times, health care professionals were unwill-ing to share their power and they rejected the mothers'mput and suggestions On the other hand, when the healthcare professionals recognized the mothers' competence,they placed too much responsibilify on the mothers tomake the nght decisions and to assume the total care of

1208 © 1995 BlackweU Science Ltd, Joumal of Advanced Nursing, 21,1201-1210

Empowerment m mothers

the child Too much responsibihty was stressful for themothers, particularly in unfamiliar situations Further-more, mothers who were deemed to be empowered didnot receive the support they required to deal with the stres-sors that occur as a result of hospitalization Clearly, healthcare professionals need to be sensitive to the negativeeffects of empowerment

INFLUENCING FACTORS IN THE PROCESSOF EMPOWERMENT

Factors that influenced the process of empowerment wereboth lntrapersonal as well as interpersonal Intrapersonalfactors mcluded the mothers' values, beliefs, determi-nation and experience Social support was the interper-sonal factor that influenced the process of empowerment

Values

The mothers' values were implicit influential factors m theprocess of empowerment The values of the child, of moth-ering, and of a sense of family were salient m this study

Beliefis

The mothers' beliefs were influential factors m helpingthem to deal with their difficulties All of the mothers inthe study had beliefs that the future could be influencedTheir beliefs for a hopeful future were reflected m theirpositive, optimistic and forward thinking orientationtowards life The mothers also trusted their own abilitiesto ceire for their child as well as the health care system toprovide their child with the best health care possibleSome of the mothers expressed belief m God or m a higherpower that helped them

Determination

The mothers' strong will and motivation to ensure thattheir child received the best care possible reflected theirdetermmation All of the mothers were remarkable m theirpersistence and perseverance to do everything that theypossibly could for their child

Experience

The mothers' past experiences were potent influential fac-tors in the process of empowerment Experiences withintheir family of origin, from work situations, and from edu-cational contexts, all influenced how the mothers meinagedthe challenges engendered m having a chronically illchild Additionally, all of the mothers learned throughtheir experiences of caring for the affected child As Kieffer(1984) noted, there was no other substitute for learmngthrough experience

Each of the aforementioned intrapersonal &ctors needsfurther m-depth research to determine its influence on theprocess of empowerment Given the unique finding m thisstudy, that the process of empowerment was largely mtra-personal, future research is needed to determine whatpersonal factors are most salient

Social support

All of the mothers benefited from the support theyreceived This support came from many sources — spouse,family, friends, health care professionals, and othermothers m similar situations

The mothers profited from the support that they receivedfrom health care professionals Specifically, informationabout the child's health status, plans for ewe and futureprojections were important to all of the mothers They feltsupported when they saw that the health care pro-fessionals were acting in the child's best interest Motherswho were less confident benefited from the support ofnurses who acted as advocates on their behalf Further-more, mothers appreciated acknowledgement from healthcare professionals for their unfailing efforts in canng sowell for then- child

Additionally, many of the mothers benefited from res-pite care for their child They appreciated this relief whichprovided them with an opportunity to balance their livesFurthermore, all of the children m the study were welllinked with services m the community, such as early inter-vention, physical therapy and home care

Most of the mothers in the study derived support fromanother mother m a similar situation There was giving aswell as receiving of support as the mothers shared theirexperiences with each other, encouraged one another andlearned from one another Clearly, the mothers experi-enced a real sense of being understood and of connectionthrough their association with other mothers

In understanding the process of empowerment, animportant consideration is the mterconnectedness of theperson and the environment The process of empowermenttcikes place m a context, which includes interactions withothers Positive interactions with others are encouraging,strengthening and edifying On the other hand, lack ofsupport and understanding is frustrating, disappointingand minimizing Yet, paradoxically, both positive andnegative support influenced the process of empowermentm this study The confhcted support, which was mamfestm feelings of frnstration, was a catalyst for constructiveaction The mteractions — both positive and negative —with others were foundational for critical reflection Then,the mothers were able to take charge and move forward

Unhke Kieffer's (1984) and Lord & Farlow's (1990) find-ings, most of the mothers m this study did not have afacilitator or external enabler to mentor them along theirpath to empowerment In fact, only one mother identified

© 1995 Blackwell Science Ltd, Journal of Advanced Nursing, 21, 1201-1210 1209

CH Gibson

any one particular person who was influential aloi^ theway A nursery school teacher was very influential ininvolving this mother m meaningful employment as wellas in lmking her with other mothers m similar circum-stances Future research that focuses on social support willprovide an understanding of what, when and how supportIS efficacious during the empowerment process

CONCLUSIONS

The process of empowerment has been described from anempirical perspective as it speciflcally pertained tomothers of neurologically challenged children Althoughthe generahzabihty of the findings is limited, the natureof the research methodology employed to describe anddefine the process of empowerment and its outcomehas analj^cal genersdizability m which the theory that isgenerated can be used to examine other situations(Hutchmson 1990) Attempts to examine other situationsfrom the theoretical perspective presented m this paper aswell as endeavours to research the concept within differentcontexts are strongly recommended

The conceptualization of empowerment that emergedfrom this study is remarkably distinct from the concep-tualization of empowerment that has been depicted m theliterature A pervasive finding m the study was how aloneand isolated the mothers were — which contrasts withother studies m which a sense of community was cnticalto ptersonal empowerment Nursmg mterventions directedat facilitating a connection with others m similar circum-stances, as well as research efforts to understand theprocess of empowerment m mothers who have suchsupport, will shed further light on the phenomenon ofempowerment m mothers of chromcally ill children

Acknowledgements

This paper is based on Cheryl Gibson's doctoral disser-tation research Dr Sister Callista Roy, Boston College, DrDonna Schwartz-Barcott, University of Rhode Island, andDr Pamela Burke, Boston College, deserve special recog-nition for their support during the research process Aspecial thank you goes to Dr Donna Schwartz-Barcott forreviewing this paper

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