Joumal of Advanced Nursmg, 1990, 15, 1250-1259

Fostering hope in terminally-ill people Kaye Herth PhD RN Assistant Professor, Graduate Programme, School of Nurstng, Northem Illinois University, 1240 Normal Road, DeKalh, Illinois 60115-2894, USA

Accepted for pubbcahon 13 March 1990

HERTH K (1990) Journal of Advanced Nursmg 15,1250-1259 Fostering hope in terminally-ill people This shidy explored the meanmg of hope and identified strategies that are used to foster hope m a convenience sample of 50 terminally-ill adults usmg the technique of methodological tnangulation (mtervievy?, Herth Hope Index and Background Data Fonn) Cross-sectional data were collected on 20 of the subjects, and longitudmal data vy^ere collected on 10 of the subjects m order to provide a dearer understandmg of the hopmg process dunng the dymg trajectory Hope was defined as an inner power directed toward ennchment of 'bemg' With the exception of those diagnosed with AIDS, overall hope levels among subjects were high and were found to remam stable over time and across the background vanables Seven hope-fostenng categones and three hopehmdenng categones were identified based on the interview responses The findmgs could serve as a guide for the development of mterventions to foster hope m termmally-iU people HOPE Hope, as a valuable human response, has received ma-easmg attenhon m recent years The health-care iiterature contains muitipie references to the importance of hope dunng times of suffermg and ioss (McGee & Ciark 1984, Menninger 1959) Empmcai studies have equated hope with the positive expectancy of good m the future However, when the future is defined m terms of hours, days or months, as is the case when life is neanng its end, does hope have a role? What does hope mean to the terminaliy-iii people? What do they do to mamtam their hope? What factors interfere with their hope? In an lnitiai effort tofindanswers to these questions, the author conducted a study that mvoived interviewing 30 terminally-iii adults regardmg their perceptions of hope The purposes were to inveshgate the meanmg of hope dunngtermmai iiiness, to identify strategies tiiattermmaliyill mdividuais use m mamtammg and fostermg hope while confrontmg the end of iife, to determme the influence of specific background charactenshcs and stages of dyu^ on hope, and to explore any dianges m hope dunng the dymg trajectory so that hope-fostenng strategies can be devel1250

oped The findmgs are important to nursing because nurses often assume a pnmary role in the care of terminally-ill ^^^^^ ^^ ^^ ,„ ^^^^^^^^ posihons to foster or hmder konp

REVIEW OF LITERATURE Hope has iseen conceptualized m the hterature as a muihfaceted phenomenon Although no universal meanmg of hope exists, hope has been descnb>ed m a vanety of ways Adolescents (lU and well) (Hmds 1984, 1988) and healthy young adults (Staniey 1978) have descnbed hope as a beiief that a personai tomorrow exists The eideriy (community and mshtuhonaiized (Dufauit 1981, Haijerland 1972) and adults confronted with a hfe-threatening situation (Fitzgerald 1971) have defined hope as a posihve expectation that goes beyond visibie facts Oncoiogy nurse specialists (Owen 1989) and hospitalized cancer patients (Fotish & Axen 1984) have depicted hope as a mohvahng force, an mner readmess to reach goals. Those descnphcms of hope have both sunilanhes and differences; tlwrefore, recommendations were made by severai investigators

Fostenng hope

(Owen 1989, Stanley 1978) to explore the meaning of hope across the health-illness continuum and to include those individuals near death The ongins of hope have been of concem to investigators for years Antecedents of hope have been identified as those situations that lead to disillusionment and that tempt one to despair, such as the presence of a loss, difficult deasions, uncertainty and/or suffenng (Dufault 1981, Marcel 1962, Plugge 1979, Stoner & Keampfer 1985) Vaillot (1970) suggested that hope begins when personal resources are exhausted Many of these antecedents are descnptive of the expenences of terminally-iU people The importance of hope to the copmg response m those who are physically ill has been of concem to both researchers and clinicians Based on their study of 30 acutely and 30 chronically-iU hospitalized patients. Green et al (1982) reported that hope is a coping strategy used by those confronted with an acute or chrome illness Empmcal studies have supported the view that hope is instrumental m the copmg responses of those cntically or chronically ill, namely those with cancer (Herth 1989, Komer 1970, Raleigh 1980, Weisman 1979), heart disease (Morgan 1971, O'Malley & Menke 1988, Rideout & Montemuro 1986) and renal failure (Baldree rf «/ 1982) Yet how individuals maintain hope when confronting terminal illness

strategies to support, enhance and mobilize hope (Hickey 1986, Miller 1983, Taylor & Gideon 1982, Travelbee 1971, Vaillot 1970) Dufault & Martocchio (1985) proposed a theoretical model for understanding the complex nature of hope based on data from interviews and observations of elderly individuals with cancer Their model though useful IS complex and needs to be empmcally tested More recently. Miller (1989) identified nine hope-mspinng strategies based on the interview of 60 patients in early recovery phase of a cntical illness The strategies delineated m Miller's study provide initial direction for developing hope-enhanang strategies m cntically-iU people, but there remains a need to systematically explore hope and identify those strategies that foster hope in those who are terminally ill

has not been completely descnbed

receiving hospice home care The hospices were located m

METHOD Sample A convenience sample of 30 terminally-iU adults from three hospice programmes pcirhcipated in the study Eligible subjects were individuals 21 years of age or older who were cogrutively alert, had a prognosis of 6 months or less to live, were aware of their terminal status, and were currently

Recent hterature has focused on the influence of illness mid-westem and south-westem United States and included and intrapersonal/demographic vanables on hope level, a small rural not-for-profit hospice with a daily patient but reports of findings are inconsistent Raleigh (1980) census of 8-10, a mid-size suburban not-for-profit hospice explored the relationship of factors of illness (category of with a daily patient census of 40-60, and a large metropoliillness and length of illness) and personal factors (age and tan for-profit, medicare-certified hospice with a daily patient support systems) on the hope level of 45 individuals with a census of 90-115 chronic illness and 45 patients with cancer She concluded that there were no significant relationships between the MEASURES identified persoruil and illness factors and the level of hope Zook & Yasko (1983), however, found m their study of 26 Interview cancer patients that the hope level deaeased as tune following diagnosis mcreased Stoner & Keampfer's (1985) A semi-structured interview consisting of five probmg study of cancer patients {n = 55) found no significant differ- questions was used to explore the meaning of hope and to ences m levels of hope among subjects in vanous phases of identify those strategies that hindered and fostered hope their illness (no evidence of disease, ongoing treatment, The questions were generzd and not intended to elicit any terminal stage) These studies leave unanswered many preconceived or theoretical notions about hope beyond queshons about the influence of illness and mtrapersonal/ the partiapant's actual expenence The questions were demographic vanables on hope 1 What does hope mean to you? 2 Tell me about your hope What bnds of thmgs do you hope for? Clinical application 3 If you could identify a source of hope for yourself, what would it be? Hope has be«i documented to be of practical importance 4 What things cause you to lose hope? to nuremg prachce (McG« 1984, Miller 1985, Scanlon 5 What helps you to mamtain your hope or makes 1989) However, little evidence has been denved from you feel hopeful? dimcal researdt to guide nurses m selecting ^propnate 1251

KHerth The interview guide was pretested on four termmally-ill patients to determme whether information about their hope states could be eliated by personal interview Based on concems expressed by the pretest respondents as well as the investigator's expenences m workmg with terminally-iU people, the vehicle of audiotaping was not used The assumption was that, without audiotapmg, the individual would feel less constramed and more willing to share intimate personal feelmgs and mformahon The length of the interviews ranged from 30 to 70 minutes Only bnef notes were made dunng the mterviews Immediately following each session, a detailed process recording was made of the entire mterview to document verbatim the conversahon of both the mvestigator and the partiapant

Herth Hope Index The Herth Hope Index (HHI), an abbreviated form of the Herth Hope Scale, was used to assess the overall hope level of the participants The HHI is a 12-item (1-4 pomt) Likert scale designed by the investigator to be used m the dimcal settmg with acute, chronic and terminally-ill adults Summative scores can range from 12-48, with a higher score denoting greater hope Face and initial content validity were established for the HHI through a panel of experts Intemal consistency reliability has been initially supported with a Cronbach alpha of 0 94 (n = 20) m hospitalized patients and 0 89 in the present study The HHI is currently undergoing extensive psychometnc testmg with acute, chronic and termmally-iU adults in a vanety of settings

Background Data Form The Background Data Form (BDF) is a self-report measure designed to elicit mformation on age, sex, educational level, diagnosis, date of entry mto the hospice programme, fatigue level and activity level These vanables have been identified m the literature as possible correlates of hope

PROCEDURE Consent was obtamed pnor to data collection from the Umversity Review Board and the af^ropnate individuals and committees of the partiapatmg hospices The procedure was two-pronged m nature and mvolved asjjects of both qualitahve and quanhtahve methodology Both a cross-sectional and longitudmal design were combined with method tnangulahon (semi-structured mterview and self-report mstrunwnts) Previous mveshgators have noted that quabtahve and quanhtative methods tend to correct. 1252

danfy, expand and stimulate each other and, when combined, contnbute to a study's intemal and extemal validity, in addihon, unique knowledge about studied phenomena may be discovered through this approach (Cook &Reichardt 1979, Webb effl/ 1966) The purposefijl blending of cross-sectional and longitudmal design with interview and self-report measures was done in this study, (a) to enhance the understanding of hope, (b) to descnbe the chronology of the hopmg process, (c) to provide evidence for intemal validity estimates, and (d) to serve as a Vcilidahng process for study findings The initial contact of potential subjects was made through a letter explammg the nature of the study sent to eligible subjects by the executive director of the respective hospices, included was a retum card that could be used to indicate interest m partiapation This procedure was followed to protect the confidentiality of the hospice families Those retummg the card were telephoned by the mvestigator to schedule an interview to review the purpose of the study, to share proposed mterview guide queshons, and to answer any queshons The interview guide questions were provided at the hme of the initial telephone contact to allow the participants time to reflect on their hope expenence so that a full descnphon could be relayed dunng the interview, in the assumption that knowing queshons in advance would promote a relaxed interview

Interviews The interviews were conducted in the partiapant's home Only the mveshgator and the partiapant were present dunng the actual mterview Informed consent was obtained pnor to the lmplementahon of study procedures Twenty of the partiapants completed the mterview, HHI and BDF dunng one interval (cross-sechonal) Ten additional parhapants completed the mterview, HHI and BDF at three mtervals before dymg Those 10 subjects met the additional cntena of havmg entered the hospice programme withm the past 2 weeks and expenenang only minimal interference with their activihes of daily living Imtially, all parhapants ccMnpleted the interview, HHI and BDF Thereafter, those mvolved in the longitudinal study completed the HHI and were mterviewed a second hme as determined by the presence of a severe impairment m their ability to complete their achvities of daily hvmg Fmally, the mterview and the HHI were completed a third time when their physical signs and symptoms mdicated that death would probably occur withm a 2-week period The BDF was not repeated after its lnihal completion because i\» ebated backgroimd data on this form

Fostenng hope

stable over time The nurses involved in the management of the partiapants' care were provided with the cntena for determining the time of the second and third interviews and were instructed to call the investigator when the participant met the cntena

Content analysis The responses from the interviews were content analysed using a data reduction technique (Miles & Huberman 1984) that enabled identification of frequently-occumng pattems or themes that could be clustered into categones After completion of the content analysis, a researcher actively involved m qualitative analysis techmques analysed 10 randomly-selected interviews by following the rules that the investigator used to determine whether the data fell withm the boundanes of a speafic category This process established mtercoder reliability of 96% for the study In addition, upon completion of the process, the study findings were validated by six termmally-ill individuals, three of whom had not been involved m the initial interviewing To identify the overall level of hope, a summative score on the HHI and descnptive statistics were calculated The background information on the BDF was tabulated, and the appropnate descnptive statistics were used

FINDINGS Characteristics of the study sample

Table 1 Background charactenstics of the sample (n = 30) Variables


Sex Male Female

8 22

Ethnic ongm Caucasian Black Oriental Hispanic Other

12 6 3 6 3

Age in years 21-35 36-50 51-65 66-80 81-95

5 9 8 6 2

Family mcome per year Less than $12 000 12 000-19 000 20 000-29 000 30 000-45 000 46 000-^0 000 Over 61 000

3 6 8 7 5 1

Educational level Less than high school Completed high school Some college/technical Completed technical Completed college

The participants ranged in agefi-om24-88 years (x = 51 years), 22 were females and eight were males Vanous racial, ethnic, soao-economic and educational backgrounds were represented (see Table I) Diagnoses vaned, but the most common in order of occurrence were terminal Diagnosis Cancer cancer (M = II), end-stage pulmonary disease (n = 8), endPulmonary stage AIDS (M = 7) and end-stage amyotrophic lateral AIDS sclerosis (ALS) (« = 3) The activity levels of the crossALS sectional sample vaned, seven were totally bedndden, Cardiac eight were up with assistance, and five were up and about Their fatigue level was rated as 'high' by most of the Activity level tune one respondents (89%) Up and about Up with assistance Bedndden Hope-fostering categcH'ies Hope-fostenng strategies were defined as those sources that functioned to instill, support or restore hope by facilitating the hoping process in some way The strategies desaib«l by the partiapants were sorted mto seven

Fatigue level time one Low Moderate High

5 12 6 2 5

11 8 7 3 1

15 8 7

0 3 27


Herth Table 2 Key categones of hope-fostenng strategies Category level

Defirung charactenshcs

Inteqjersonal/ connectedness Lightheartedness

Presence of a meanmgful shared reiahonship(s) with another person(s) Feehng of delight, joy or playfulness that IS communicated verbally and nonverbally Personal attnbutes Attnbutes of determination, courage and serenity Attainable aims Directing efforts at some purpose Spintual base Presence of achve spintual beliefs and practices Uplifting memories Recalling posihve moments/times Affirmation of worth Having one's individuality accepted, honoured and acknowledged

categones that were unidimensional but not mutually exclusive (see Table 2) The seven categones of hopefostenng strategies were (a) interpersonal connectedness, (b) attainable aims, (c) spintual base, (d) personal attnbutes, (e) light-heartedness, (f) uplifting memones, and (g) affirmation of worth

Interpersonal connectedness The category of mterpersonal connectedness was descnbed as the presence of a meaningful shared relahonship(s) with another person(s) (family, significant others, professionai caregivers) Partiapants consistently used the term 'shared' in their descnphon ofa meaningful relationship Meanmgful was further defined by the partiapants as a 'sense of being needed' and of "bemg part of something' The followmg responses of parhcipants illustrate interpersonal connectedness 'someone who shares m my joumey and walks with me', 'the fnend that shares a part of their self with me', 'a willmgness on the part of the nurse to share m my hopes', 'others who radiate hope so I feel hope', 'the feelmg that the person is truly present with me', 'the touch or hug that communicates "I'm with you"' One respondent summed up eloquently this interpersonal connectedness as follows 'Other people influence my hope (hopes) by their willingness to share a part of themselves through their affirmation, reassunng presence, encouragement, willingness to listen attenhvely, to touch and to share hopes and feelings' Perhaps human toudi and human presence may in some way directly and/or indirectly restore the human-centred dignity and afifirmahon of bemg that IS necessary for the emergence of hope 1254

Attainable aims Attainable aims were defined as a purpose or sense of direction Some authors ldenhfied aims as being synonymous with goals (Miller 1985, Vaillot 1970) Intereshngly, the partiapants never used the term 'goal' when descnbmg hope-fostenng strategies, rather, they used the term 'aims' When this usage was further explored, several participants expressed that 'goal' connoted the distant fiahire and was therefore not appropnate because of their limited life expectancy All partiapants stated that the presence of aims fostered hope For this sample, the object of the aims was a sense of meaning or purpose m life The aims were not fixed, rather they were redefined and refocused in three dishnct phases as physical detenoration and limitations became more evident This phenomenon was noted with the longitudinal sample and validated with the cross-sectional sample when interview responses were grouped according to activity level The aims ldenhfied by the participants who were still able to be up and about, though weak, were speafic, tangible and focused on today, tomorrow, next week, or the next couple of months None of the partiapants mentioned next year Responses that illustrate this focus were 'a month more to finish my book of poems', 'a couple of weeks to clean my closets and get my affairs in order', 'a relief of pam just for today' As more pronounced physical changes occurred and the ability to complete their achvities of daily living became impaired, the participants' aims focused less on self and more on others There was a noted shift in their values, the future was no longer defined by time, but by family and close fiiends and the meaning attached to bfe events The aims at this pomt became more global in nature, as the following responses demonstrate 'happiness for my daughter and her new husband', 'the best for my two young sons as they grow up', 'family support for my wife' It is mtereshng to note that hope mvolved good for another person but was significant for a hoping person's well-bemg because of his or her relahonship with the other person One partiapant summed up the focus of aims at this pomt as 'envisionmg a posihve outcome for those I love' A final change in the focus of aims seemed to occur when death became imminent m less than 2 weeks or, often, days Then aims refocused back on self, but this time m terms of Ijemg' rather than 'having or domg' Included now was the desire for serenity, mner peace and eternal rest ^iritualbase All parhcipants exc«pt two ldenhfied the presence of achve spintual beliefs (m God or a 'bgher bemg') and spintual

Fostering hope practices as a source of hope Specific practices that were identified mcluded praying, enlistmg the prayers of others, listening to spintual music and spintual programmes on the radio or television, participating in religious achvities, maintaining specific religious customs, and visitmg members and leaders of their spintual community The sigruficance of spintual beliefs and practices is seen m the following responses 'my faith m God holds me up', 'my beliefs help me to overcome the sufifenng', 'prayers lift me up when I need comfort' The participants noted that their spintual faith provided a sense of meaning for their suffermg that transcended human explanahons and fostered their hope(s)

Personal attributes Positive personal attnbutes were descnbed as those attnbutes withm the self that enabled uplifting feelings and thoughts to be found despite the circumstances Three attnbutes — determination, courage emd serenity — were specifically identified by 92% of the respondents Determination was consistently listed first by the respondents Words used that connoted determination were 'stubbornness', 'iron will' and 'solid resoluhon' Exemplar responses included 'I keep going no matter what', 'sheer determinahon gives me strength', 'nothing can keep me from completmg what I need to' Courage was named most fi'equently after determination One participant graphically descnbed courage as 'the guts to contmue on, even in impossible circumstances' Other descnptions included 'I can face whatever I need to', 'courage helps me to stare my pam m the face' Parhcipants menhoned that courage gave them a sense of being tnumphant and thus fuelled their hopes Serenity was identified by all of the respondents and was descnbed as a sense of inner peace, harmony and calm It was voiced that this inner feelmg of tranquility allowed for the mobilizahon of hopes One parhcipant descnbed sereruty as 'purposeful pausing that aUowed hope to surface'

Lightheartedness Lightheartedness was viewed by the partiapants as the feeling of debght, joy or playfulness that was communicated verbally and nonverbally Accordmg to the majonty of respondents, the spint of lightheartedness can provide a communicahon link between persons and a way of coping with failmg body fuiKhon and confused emohons, it can provide a sense of release from the present moment

Specific responses were 'humour makes me feel that the person knows I'm still alive', 'when I laugh I can get a better perspective on my situahon', 'we communicate better when we share laughter and joy', 'if I can laugh, I feel like I still have some power' As one respondent said, 'I may not have much control over the nearness of death, but I do have the power to joke about it'

Uplifting memones Recalling upliftmg moments/times was suggested as a hope-fostering strategy by 90% of the respondents Several stated that it was helpful to share happy stones from the past and to reminisce through old picture albums Reliving positive achvities from the past, such as meaningful vacations, significant events (birth of child, receipt of medal) and 'sunsets over the mountains', served to renew the hoping process It may be that memones of the past can serve to ennch the present moment

AfBrmation of worth Eighty-two per cent of the participants identified that havmg one's individuality accepted, honoured and acknowledged fostered hope Respondents spoke warmly of family, fnends and health care personnel that treated them as worthwhile human beings despite increasing physical limitahons Some of the responses given were 'my volunteer wanted to hear about my feelings — she made me feel okay', 'the nurse stayed with me dunng the cnsis, so I knew I must shll be a worthwhile person', 'my fnend stayed when my pam became intolerable, so I knew I was accepted for me'

Hope-hindering categories Hindrances to hope were defmed as those factors that interfere or mhibit the possibility of attaining or mamtaining hope The participants, when asked to descnbe those factors that foster or interfere with hope, consistently and immediately descnbed those factors that threatened hope One possible explanahon as to why factors that decreased hope came to mind so quickly may he in the fact that, as a result of these threats, the partiapant felt fnghtened and out of control of the situation This might transpire espeaally at a time when physical changes were occumng and every diange was unfamiliar The responses that hindered hope were divided into the followmg three categories (a) abandonment and isolation, (b) uncontrollable pam 1255

K. Herth

Table 3 Key categones of hope-hindenng strategies

Category label

Defining charactenstics

Abandonment and isolation

Physical and/or emotional loss of significant others Continuance of overwhelming pain or discomfort despite repeated attempts to control Being treated as a nonperson of little value

Uncontrollable pain and discomfort Devaluation of jjersonhood

and discomfort, and (c) devaluation of personhood (see Table 3)

Meaning of hope



A picture of hope emergedfromthe data Hope, as viewed by the termmally-iU subjects in this study, is dynamic and Abandonment and isolation complex m nature Hope involves many thoughts, feelings and actions Many partiapants delineated that through All responses in this category were related to the physical hope they developed a new awareness of what is possible and/or emotional distancing

Fostering hope in terminally-ill people.

This study explored the meaning of hope and identified strategies that are used to foster hope in a convenience sample of 30 terminally-ill adults usi...
963KB Sizes 0 Downloads 0 Views