caregiver grief in terminal illness and bereavement: a mixed … · 2018-11-02 · grief in...

11
Caregiver Grief in Terminal Illness and Bereavement: A Mixed-Methods Study . , Deborah P WaUrop Caregivers experience multiple losses during the downhill trajectory of a loved one's terminal illness. Using mixed methods, this two-stage study explored caregiver grief during a terminal illness and after the care recipient's death. Caregiver grief was a state of heightened responsiveness during end-stage care: anxiety, hostility, depression, and trouble concentrating, remembering, and getting things done. Following the death, caregiver grief became a state of sustained reactivity: Overall distress was diminished and anxiety and hostility decreased significantly, but loneliness, sadness, and tears increased. Overwhelming responses were triggered by unforeseen visual or auditory reminders ofthe person. Sleep disturbances began during end-stage care and continued after the death. At both times, caregiver grief was highly influenced by the social context; relationships with family and friends (more cohesive versus conflicted) shaped responses. Social work practitioners can help caregivers who may be unaware they are experiencing grief to identify and integrate these normal responses to loss. KEY WORDS: hcreauemeiit; care^^iuergrief; end-stajie caregiving C hronic illnesses that become terminal bring losst's ibr both ill people and their caregiv- ers. Less attention has been focused on the losses entailed while caring for a chronically ill per- son than on those that occur after death. Advancing illness encompasses both physical loss, which occurs when something tangible becomes unavailable (for example, functional decline or dependence) and psychosocial loss, which results from changed social interactions (for example, the need for assis- tance with activities of daily living) (Rando, 2000). Losses begin with the onset of symptoms, such as decreased function nnd increased fatigue, continue as the symptoms of a progressive illness become more pronounced and intensify during the active dying process (Loscalzo & Brintzenhofeszoc, 1998). Losses continue to emerge long after the person dies. There is growing recognition that caregivers ex- perience normal anticipatory grief while engaged in the caregiving process (Sanders & Saltz Corley, 2003). "Caregiver grief" has been described as the intellectual, affective, and existential elements of changing care demands and expectations (Meuser &" Marwit, 2001). Because individuals'grief varies in intensity, duration.and form of expression,caregiver grief accompanying different illnesses is likely to involve distinct features and dynamics (Carr, House, Wortman, Neese. & Kessler, 2001). For example, the caregivers of people with dementia experience anticipatory grief and a long goodbye (Walker & Pomeroy, 1996). This article focuses on the situation-specific re- sponses of caregivers of terminaUy ill people who died while receiving hospice care and aims to expand the knowledge base about caregiver grief in different illnesses. Hospice programs typically require tbat a person be diagnosed with an incurable illness tbat is expected to result in death within six months; many, although not all, have cancer (National Hospice and Palliative Care Organization, 2005). CONCEPTUALIZING RESPONSES TO ILLNESS, CAREGIVING, AND LOSS The concepts of distress, grief, bereavement, and mourning are often used interchangeably in rela- tion to psychosocial responses to a terminal illness. Distress has been used to distinguish and measure specific indicators such as depression and anxiety (psychological distress) and pain or nausea (physical distress) (Cameron, Franche, Cheung, & Stewart, 2002).The National Comprehensive Cancer Net- work (2003) has defined distress as "a multifactorial CCC Code: 0360-7283/07 t3.00 O2D07 National Association of Social Workers 197

Upload: others

Post on 06-Jul-2020

2 views

Category:

Documents


0 download

TRANSCRIPT

Page 1: Caregiver Grief in Terminal Illness and Bereavement: A Mixed … · 2018-11-02 · grief in terminal illness and (2) how do the features of caregiver grief change after the death?

Caregiver Grief in Terminal Illness andBereavement: A Mixed-Methods Study

. , Deborah P WaUrop

Caregivers experience multiple losses during the downhill trajectory of a loved one'sterminal illness. Using mixed methods, this two-stage study explored caregiver grief during aterminal illness and after the care recipient's death. Caregiver grief was a state of heightenedresponsiveness during end-stage care: anxiety, hostility, depression, and trouble concentrating,remembering, and getting things done. Following the death, caregiver grief became a stateof sustained reactivity: Overall distress was diminished and anxiety and hostility decreased

significantly, but loneliness, sadness, and tears increased. Overwhelming responses weretriggered by unforeseen visual or auditory reminders ofthe person. Sleep disturbances beganduring end-stage care and continued after the death. At both times, caregiver grief was highlyinfluenced by the social context; relationships with family and friends (more cohesive versus

conflicted) shaped responses. Social work practitioners can help caregivers who may beunaware they are experiencing grief to identify and integrate these normal responses to loss.

KEY WORDS: hcreauemeiit; care^^iuergrief; end-stajie caregiving

Chronic illnesses that become terminal bringlosst's ibr both ill people and their caregiv-ers. Less attention has been focused on the

losses entailed while caring for a chronically ill per-son than on those that occur after death. Advancingillness encompasses both physical loss, which occurswhen something tangible becomes unavailable(for example, functional decline or dependence)and psychosocial loss, which results from changedsocial interactions (for example, the need for assis-tance with activities of daily living) (Rando, 2000).Losses begin with the onset of symptoms, such asdecreased function nnd increased fatigue, continue asthe symptoms of a progressive illness become morepronounced and intensify during the active dyingprocess (Loscalzo & Brintzenhofeszoc, 1998). Lossescontinue to emerge long after the person dies.

There is growing recognition that caregivers ex-perience normal anticipatory grief while engagedin the caregiving process (Sanders & Saltz Corley,2003). "Caregiver grief" has been described as theintellectual, affective, and existential elements ofchanging care demands and expectations (Meuser&" Marwit, 2001). Because individuals'grief varies inintensity, duration.and form of expression,caregivergrief accompanying different illnesses is likely to

involve distinct features and dynamics (Carr, House,Wortman, Neese. & Kessler, 2001). For example,the caregivers of people with dementia experienceanticipatory grief and a long goodbye (Walker &Pomeroy, 1996).

This article focuses on the situation-specific re-sponses of caregivers of terminaUy ill people whodied while receiving hospice care and aims to expandthe knowledge base about caregiver grief in differentillnesses. Hospice programs typically require tbat aperson be diagnosed with an incurable illness tbat isexpected to result in death within six months; many,although not all, have cancer (National Hospice andPalliative Care Organization, 2005).

CONCEPTUALIZING RESPONSES TOILLNESS, CAREGIVING, AND LOSSThe concepts of distress, grief, bereavement, andmourning are often used interchangeably in rela-tion to psychosocial responses to a terminal illness.Distress has been used to distinguish and measurespecific indicators such as depression and anxiety(psychological distress) and pain or nausea (physicaldistress) (Cameron, Franche, Cheung, & Stewart,2002).The National Comprehensive Cancer Net-work (2003) has defined distress as "a multifactorial

CCC Code: 0360-7283/07 t3.00 O2D07 National Association of Social Workers 197

Page 2: Caregiver Grief in Terminal Illness and Bereavement: A Mixed … · 2018-11-02 · grief in terminal illness and (2) how do the features of caregiver grief change after the death?

The multifaceted nature of distress, grief,bereavement, and mourning underscores the

importance of viewing the response to lossfrom a biopsychosocialperspective.

unpleasant emotional experience of a psychological(cognitive, behavioral, emotional), social, and/orspiritual nature that may interfere with the ability tocope effectively with cancer, its physical symptomsand its treatment" (p. 6).

Crief is the multifaceted response to death andlosses of all kinds, including emotional (affective),psychological (cognitive and behavioral), social,and physical reactions (Stroebe, Hansson, Stroebe,ik Schut, 2001). Death brings the loss of social andfamily roles and shared activities. Affective manifes-tations of grief involve despair, anxiety, anger, andloneliness. Behavioral symptoms include agitation,fiitiguc. crying, and withdrawal. Cognitive manifes-tations can consist of preoccupation with thoughtsof the person who is dying or has died, loweredself-esteem, helplessness and hopelessness, a senseof unreality, and problems with memory and con-centration. Physiological symptoms can manifest asdiminished appetite, sleep disturbance, energy lossand exhaustion, somatic or physical complaints,changes in drug intake, and susceptibility to illnessand disease (Rando, 2000; Stroebe et al.). Grief hasalso been associated with increased mortality (Schulz& Beach, 1999).

Bereaivment is the state of having lost a signifi-cant person to death. Mourning is the process ofadapting to the loss and involves restructuring orrenegotiating the psychosocial ties with the personwho died (Klass & Walter, 2001). Thus, the persondevelops an identity without the lost loved one andadapts to living without his or her physical presence(Rando, 2000). The multifaceted nature of distress,grief, bereavement, and mourning underscores theimportance of viewing the response to loss fi"om abiopsychosocial perspective. For conceptual clar-ity, caregiver grief is used here as a construct thatencompasses the symptoms of distress.

CONTEXT OF TERMINAL ILLNESSAND BEREAVEMENTThe concept of an illness context has been describedby Stroebe and colleagues (2001) as a merger of thedistinct features of a disease with the patient's and

caregiver s social context. The illness context hasbeen described in multiple sources and includesthe following eight features: (1) the diagnosis andpresence of coexisting conditions (Vigano et al.,2000); (2) the amount, type, and duration of symp-toms (Barry & Prigerson, 2002); (3) the need forcaregiving and whether care is partial or total andprovided informally or through formal providers,including a nursing home (Carr et al., 2001); (4)the age and life stage of the ill person (Sorensen,Pinquart, & Duberstein, 2002); (5) the type ofrelationship between the ill person and caregiver(Pinquart & Sorensen, 2003); (6) the nature andquality of the social support network (Marwit &Meuser, 2002); (7) bow quickly the illness movesfrom the onset of symptoms through diagnosis andtreatment and enters the terminal decline (Schulz etal.,2001);and(8) how the ill person and close familymembers communicate about death (Chen et al.,1999). Features of the illness context subsequentlyinfluence the caregivers response to bereavement(Chentsova-Dutton et al.,2002).

How a family functions during the course of aterminal illness can influence the caregiver's healthand well-being long after the death (Schulz &Beach, 1999). Bereaved caregivers express intensefeelings {botb positive and negative) about end-stagecaregiving. Recent caregiving studies have empha-sized that gains and losses coexist in the caregivingrelationship (Kramer. 1997). Negative feelings areexpressed as the wish to have done more,perceptionsof mistakes, or regrets about unresolved issues (Ber-nard & Guarnaccia, 2003; MuLlan. 1992). Positivefeelings about caregiving have also been identifiedas satisfaction and meaning making; those emergefrom viewing the importance of fmal, shared times.Two perspectives on bereavement responses are there/iefand the complicated models.

Tbe relief model portrays the resolution of dis-tress after the ill person dies and caregiving ends.The relief of responsibilities frees the individual tore-establish employment, social contacts, or leisuretime and to use psychological resources to adaptto the loss (Bernard & Guarnaccia, 2003). In somesituations, a longer trajectory allows for preparationbefore tbe death (Bass & Bowman, 1990). Bereavedcaregivers who experience relief find decreased feel-ings of overload and an increased sense of masteryin their lives (MuUan, 1992).

The complicated model portrays how distress canbecome exacerbated after tbe deatb. Heightened

198 Health & Social Work VOLUME 52, NUMBER i AUGUST 2007

Page 3: Caregiver Grief in Terminal Illness and Bereavement: A Mixed … · 2018-11-02 · grief in terminal illness and (2) how do the features of caregiver grief change after the death?

role strain from caregiving may lead to greaterdifficulty in subsequent bereavement (Bernard &Guarnaccia, 2003). Role strain emerges from theoverlapping responsibilities that accompany thesimultaneous family roles (Mullan, 1992).The lackof an opportunity for closure and unresolved rela-tionship issues between caregiver and care recipientcan complicate tbe bereavement process; multiplere.sponsibilities can interfere with resolution of tberelationship before death. Perceptions are paramount;family members wbo perceive caregiving as difficultare at greater risk of troubled bereavement (Bass &Bowman, 1990; Schuiz & Beach, 1999).

Knowledge about the relationship between care-giver grief and well-being is important for healthand mental health professionals who work withcaregivers at the turning points of a terminal illnessand after the death. This study explored caregivergrief during terminal illness and one year after thecare recipient's death .The study aimed to answer tworesearch questions: (1) What is the nature of caregivergrief in terminal illness and (2) how do the featuresof caregiver grief change after the death?

METHODStudy Design and ProceduresThis exploratory descriptive phenomenologicalstudy was conducted at a hospice in western NewYork state from 2001 to 2002 in two stages and usedA mixed-methods approach. Qualitative and quanti-tative Tnethods were used in parallel and equal status(Tashakkori &Teddlie, 1998) to facilitate triangula-tion and to illuminate overlapping components ofgrief in cnd-of-life care (Padgett, 1998). Standard-ized instruments provided a means for measuringdistress. An interview schedule was used to guidediscussions and gather descriptions of participants'experiences in their own words. :\

SamplePurposeful sampling was used to identify peoplewho were caring for a terminally ill family memberor friend. Following university Institutional Ke-view Board approval, recruitment was conductedthrough the participating hospice by using inclu-sion criteria that were developed collaborativelyby myself and an advisory board. Participants badto be caregivers of adults who had received hos-pice care at home for at least two weeks and hada Palliative Performance Scale score of 40 to 50 orhigher. A Palliative Performance Scale score of 40

to 50 indicates tbat a person requires considerableassistance with self-care but is able to converse(Anderson, Downing, & Hill, 1996). Because tbefinal stages of a terminal illness can bring rapidchange, procedures were developed to ensure tbatcontact about or participation in the study didnot intrude into the family's shared time duringthe final stage of life. Contact was made only witbfamilies who were still caring for the terminallyill person at home after the first two weeks ofhospice, for two reasons: (1) Many people enterhospice only during the terminal decline and diewithin two weeks (National Hospice and Pallia-tive Care Organization, 2005) and (2) all of theinterdisciplinary team members make initial visitsto the patient within the first two weeks.

Participants ranged in age from 28 to 75 (Ai = 61years) and included 23 women (77 percent) (daugh-ters, daughters-in-law, wives, granddaughter, and afriend) and seven men (23 percent) (husbands andsons). Patients ranged in age from 61 to 85 (A/ = 77years), and a majority (87 percent) were admittedwith cancer.

Time 1 interviews were conducted after the carerecipient had received hospice care for at least twoweeks. Participants received an informational letterthat explained that the project aimed to explorehow caregivers' experiences change over time andthat tbey would be contacted about a future follow-up interview.Time 2 interviews were conductedapproximately one year after the care recipient'sdeath.

Time 1 and 2 interviews were conducted bymyself or one of three second-year MSW studentresearcb assistants. All interviews were scbeduledat a time and place of the participants" choice. Thedates of care recipients'deaths were provided by thebospice, and letters about time 2 interviews weresent one year after the death. Willing participantsreturned a response form, and telephone contactwas made to schedule an appointment. Tbis timeperiod was selected because it corresponds with theend of hospice bereavement services.

Instrumentation and MeasuresOpen-ended question-, and the Brief Symptom In-ventory (BSI,Derogatis, 1993) were used in time 1and time 2 interviews.TheTexas Revised Instrumenton Grief (TRIG, Faschingbauer, DeVaul,& Zisook,1987) was also used during time 2 interviews.Tbesequence for botb time 1 and time 2 interviews was

WALDROP / Care^ver Grief in Terminal Illneu and Bereavement: A Mixed-Methods Study 199

Page 4: Caregiver Grief in Terminal Illness and Bereavement: A Mixed … · 2018-11-02 · grief in terminal illness and (2) how do the features of caregiver grief change after the death?

siiTiilar: open-ended questions, embedded scaledquestions, and open-ended questions. The open-ended questions encouraged participants to describetheir experiences of a loved one s terminal illnessat their own pace.

The BSI is a 53-item self-report instrument thatasks participants how they have been feeling duringthe past 14 days. Each item is rated on a five-pointscale of distress: 0 = not at all, 1 = a httle bit, 2 =moderately, 3 = quite a bit, and 4 = extremely. Inaddition to measuring distress symptoms, the BSIis designed to measure distress on dimensional andglobal levels.

The nine dimensions of distress and their docu-mented internal reliabihty coefficients are as follows:somatization or perceptions of bodily dysfunction(.80); obsessive-compulsive thoughts and impulsesthat are both unremitting and unwanted (.83);phobic anxiety or a persistent fear response that isdisproportionate (.77); anxiety or feelings of ner-vousness, tension, and apprehension (.81); clinicalindicators of depression (.85); interpersonal sensi-tivity or feelings of personal inadequacy, inferiority,self-deprecation, and self-doubt in interpersonalinteractions (.74); hostility or thoughts, feelings, andactions that characterize anger (.78);psychoticisni aswithdrawal and isolation (.71);and paranoid ideationor thoughts that are projective, hostile, suspicious,and grandiose and related to a loss of autonomy(.77). The three measures of overall distress andtheir internal reliabilities arc the Global SeverityIndex (.90), which is determined by combiningthe numbers of symptoms and intensity of distress;the Positive Symptom Inventory Total (.80), or thenumber of reported symptoms; and the PositiveSymptom Distress Inventory (.87), which measuresthe intensity level of distress.

The TRIG was designed to assess grief responses.The Past Disruption subscale has eight items andan internal reliability of .77 to .87. Past Disruptionquestions begin with "After the person died "and are followed by the eight items. The PresentFeelings subscale consists of 13 items and has aninternal reliability of .69 to .89. Present Emotionquestions begin with "How do you presently feelabout the person's death?" Each response is fol-lowed by five choices: 1 = completely false, 2 =mostly false, 3 = true and false, 4 = mostly true,and 5 = completely true. One question."No onecan take the place of the person who died," wasremoved because the advisory board's review of

the instrument generated concern that the sug-gestion of replacing the person could be upsettingfor participants.

Open-ended questions during the time 1 in-terview focused on the participants' caregivingexperiences. Questions about the person's illnessand decline were followed by probing questions toencourage participants to fully describe their expe-riences. During the time 2 interview, participantswere asked to describe the fmal stage ofthe illness,the death, and their responses.

Quantitative Data AnalysisDemographic and diagnostic information was en-tered in SPSS; fi-equencies and descriptive statisticswere calculated.Time 1 and 2 responses to the BSIand the TRIG were entered in SPSS. Global distressindices and dimensional scores were calculated. BSIsubscale scores and individual items were rankedby descending means. The differences betweentime 1 and time 2 scores were calculated by usingpaired t tests.

Qualitative Data AnalysisInterviews were tape recorded and transcribed.Analysis began with open coding, or identification ofmeaning units through line-by-line examination, togenerate naturally occurring themes from within theparticipants' descriptions at times 1 and 2 (Padgett,1998). Next, axial coding, or the systematic use ofconcepts for data exploration around one category,was accomplished by using a start list of codes thatwere concepts from the biopsychosocial penpective(Miles & Huberman, 1994). Concept codes werephysical health, psychological well-being, and socialfunctioning and were used to explore participants'narrative descriptions of their experiences at bothtimes. Goding was conducted by partitioning sec-tions of textual data and copying them under head-ings that corresponded to the concept. To ensurerigor and trustworthiness of the data, transcriptswere explored by two coders (myself and an MSWclinician), and the iterative process of constantcomparative analysis or recoding by using newlyemergent themes was used. A text file of quoteswas created for illustration.

A cross-case matrix was constructed to reduce thesubstantial amount of text and to organize codeddata so that the salient features would emerge. Amatrix is a visual display that presents qualitative datasystematically by using a 2 x 3 grid with defined

200 Health &SocialVfork VOLUME 31, NUMBER 3 AUGUST ZOO7

Page 5: Caregiver Grief in Terminal Illness and Bereavement: A Mixed … · 2018-11-02 · grief in terminal illness and (2) how do the features of caregiver grief change after the death?

rows and columns in which quotes and phrases areplaced (Miles & Huberman, 1994).This analysis useda variable x time format. Columns in the matrixwere set up for time 1 and time 2 responses. Rowsin the matrix were divided and labeled as three mainsections: physical health, psychological/emotionalwell-being, and social functioning. Subcells of thegrid were created for each participant's responses.The text from bothTime 1 and 2 interview responseswere coded for the biopsychosocial dimensions ofdistress for each pardcipant.Themes were developedfrom the summary matrix.

RESULTSF~indings are drawn from a comparison of the re-sponses of only those people who completed bothtime 1 and time 2 interviews (N = 30).

Time 1: Providing End-Stage CareTable 1 presents the nine BSl dimension scores andindividual item scores that were either greater thanone at both times or significantly different betweenTimes 1 and 2. Table 2 presents a matrix of thethemes that illustrate biopsychosocial dimensionsof distress during caregiving and bereavement. Thesymptoms of distress that characterize caregivergrief during the end stage of care and after a year ofbereavement are illustrated in participants' words.

Physical Health. Three distinct physical health-related features of distress occurred during end-stagecare: sleep disruption, exacerbation of chronic illnesssymptoms, and physical strain. Participants describedfrequent sleep interruptions while they were pro-viding around-the-clock care because they becameaccustomed to either sleeping lightly or gettingup frequendy co help the person during die night.The exacerbation of illnesses such as hypertensionand cardiac conditions was attributed to caregiv-ing litress. Participants also described fatigue andphysical strain trom providing 24-hour care. Oneparticipant's description illustrates the physical na-ture of her caregiving distress:"He couldn't breathewithout his oxygen and was afraid to be alone so Icouldn't leave him. I needed help but couldn't fmdanyone good to stay with him. We had some reallybad experiences. My blood pressure went sky-high;my doctor said it was stress/anxiety." Descriptionsof the physical demands of caring for someone withincreasing needs and functional decline influencedparticipants' outlook on hfe and perspectives oncaregiving.

Table 1: Mean Grief ResponseScores in Caregiving (Time 1)

and Bereavement (Time 2)

1Grief ResponseUbscsMve-LOiiipuisivC

Remetnbering things''Trouble concentrating''Mind goes blank''Blocked get things done""

AnxietyTense/keyed up''Nervous/shak/'Restless''FearKiTerror/panic*"

Depression'Keeling blue*'Feeling lone!/

HostilityAnnoyed/irritated''Temper outbursts''

Interpersonal sensitivityPsychoticism'

Lonely with jjeople''Somati/.ation'Paranoid ideation'Phobic anxietyAdditional items

Trouble falling asleep''Trigger: past disruption

Hard to sleepDo things person wantetNot normal activities

Trigger: present emotionsMiss very muchThings remind meStill cry

Time 1:CaregivingM

TJ51.561.461.441.331.141.931.411.191.110.740.931.931.150.731.560.850.640.611.260.600.630.44

1.37

SO1.121.401.211.401.360.901.171.251.111.09l.U)0.831.141.200.821.281.130.750.781.260.660.640.69

i.62

Time 2:Bereavement

Mi . l l

1.501.071.071.290.561.140.610.710.290.390.771.141.500.400.960.430.660.441.070.440.620.32

1.0418.893.02.92.6

34.04.63.93.8

SOJ

1.001.051.15*1.330.53***1.10***0.78**1.08'0.60***0.70*0.681.08*1.430.45*L04**0.74*0.730.461.300.500.620.54

1.206.651.601.501.607.010.921.000.92

•Dimension.level scores, 'Symptom.level Kores remaining more than one at Iwthtimes or demonslratlng iignlticant change.'p< .05, "p < .01. " " p < .00!.

Psychological and Emotional Wetl-Being. Psy-chological and emotional responses were intenseand had the predominant features of sadness andanger. Caregivers' emotional responses paralleledthe ill person's decline. Participants described theirresponses to the person's advancing illness with thefollowing words: "sobbing," "crying," "not able to

WALDROP / Caregiver Grief in Terminal Illness and Btreauement: A Mixed-Methods Study 201

Page 6: Caregiver Grief in Terminal Illness and Bereavement: A Mixed … · 2018-11-02 · grief in terminal illness and (2) how do the features of caregiver grief change after the death?

Table 2: Elements of Distress from Caregivers' NarrativesDimension Time 1: CaregivingI ' l ^ M l l i - i i . . ; ! ' ! ! • • • ! . , : i . | ' ' K ! ] ' l n i ' ; * ." • : ' • • ! i i . i i

K-S[JiJlldlllg to llttJs.

• [exacerbation of symptoms of chronic condi-lions: blood pressure, back problems, stress-related conditions.

• Physically burdensome tasks: lifting, manninghousehold tasks.

Psychological • Sadness-tears: observing the persons decline,and emotional • Anger: at providers, family, and the situationwell-being • -Submerged feelings: Gain control by "pushing it

down."

Social • Increased family cohesion: Family membersfunctioning share caregiving responsibilities and problem

solving.• Decreased family cohesion: conflict about

caregiving responsibilities• Increased social support: Increased contaa tbr

hands-on assistance, informational and emo-tional support.

• Decreased social support; Friends become un-comfortable or fatigued with caregiver's needs;withdravwal from interaction.

Time 2; Bereavement

Lu JwakfLi (ILH.III;,;! UH ).it,ui. >ii vii^ij...:" [.unit

ates sleep, causes awakening.Chronic conditions: Most prior exacerbationsof symptoms diminish; some had new onset.

Overwhelming sadncss-teare.Triggers (sights, sounds, smells, geographic lo-cations, family events) bring on intense d^ji-vuexperiences and overwhelming responses.

Increased family cohesion: shared grief andmemories.Decreased family cohesion: Pejorative expecta-tions of grief reactions cause distance.Increased social support: Bereaved caregiveris enveloped by friends, neighbors who makeinvitations, cal!, and send card.s.Decreased social support: Grief responses areoverwhelming to others who "can't handle it,"or person is overwhelmed by the hole in beingIn familiar sittiations without the beloved.

stop the tears," and "wailing," as well as "screatning,""hollering,""rage" and "[being] angrier than everbefore." One participant illustrated this hy saying,"I'm so angry that he refUses to talk about his ill-ness—he needs 'hope' but I need to know what todo about the septic tank!" Another participant said,"I'm an emotional mess. I don't feel like anyoneunderstands what I'm going through."

Participants sometimes submerged intense re-sponses while they were dealing with the ill penon'sneeds. One participant's words illustrated how sheburied her responses: "It is like pnshing everythingdown where you can't get at it." Managing theseresponses was a way of maintaining control in anotherwise overwhelming situation.

Finally, participants described the need to pe-riodically avoid discussion about the illness anddying process. Emotional responses to change andloss are an integral part of end-stage caregiving,but the intensity of feelings that accompany an ad-vancing disea.se process manifests itself in distinctlyindividual ways.

Social Functioning. End-stage caregiving changedtlie interpersonal dynamics within faniihes and so-cial support networks. For some, changes includedintensified conflict, whereas for others there wasgreater cohesiveness. Some social networks en-veloped the ill person and caregivers; friends.

extended family, church members, or coworkersprepared meals and provided transportation, respite,and emotional support through visits, phone calls,and cards. One participant said, "My whole officeknew [about her father] and they were devastatedfor me."

Others felt limited support from those in theirsocial network. In these situations, participants wereoverwhelmed and believed that those around themwere uncertain how to respond. One man explainedthat whenever he would talk with friends, caregiv-ing for his mother was discussed. Feeling that hewas monopolizing the conversation and making hisfriends uncomfortable, he said, "I began to realizethat this was all 1 talked about with them and it wastoo much. I dropped out of social interaction." Otherparticipants described how caregiving changed theway that they related to family members. One par-ticipant described how caregiving had influencedher relationship with her family:

I'm so moody at times. I mean my husbanddoes one thing and I wanna punch him in theface. I'm not kidding you! I'm very edgy. And tothe kids too. Last night they said, "Something'swrong with you. Mom." I hate that. And theirgrandmother is dying. OK but that's not whatthis is about. They left this big fat mess in the

202 Health & Social Work VOLUME J2 , NUMBER 3 AUGUST 2007

Page 7: Caregiver Grief in Terminal Illness and Bereavement: A Mixed … · 2018-11-02 · grief in terminal illness and (2) how do the features of caregiver grief change after the death?

house wlien I came home after sitting with mymotlier all day, you know?

Caregiving for someone who is dying becomes aprimary focus and changes the nature of all social re-lationships.These accompanying social losses ripplethrough the network of family members, friends,neighbors, acquaintances, and coworkers. .

How Distress Changed at Time 2:BereavementTtic C;iobul Severity Index results indicate thatoverall distress decreased between caregiving andbereavement (GSI . ^ ,, M = 0.83. SD = 0.69. andGSI, ,,,, ,, M = 0.60,'!sD = 1.0) and was significantlydifferent (p s ,044). Positive Symptom Inventory re-sults indicate that the number of symptoms decreased(PSI .. ,, ,. AJ = 20.59, SD = 12.20, and PSI-j., , ,,M =T8.86, SD = 12.72). but the difference wasnot significant (p < .557). The Positive SymptomDistress Inventory results indicate that the intensityofthe distress decreased (PSDI ^ ^ ^ M = 2.02, SD^ 0.96. and PSDI ^ , ,. M = 1.57 SD = 0.63) andwas significantly different (p £..014). See Table 2 fortime 2 BSI and TRIG scores.

Physical Health. Bereaved caregivers describedsleep disruptions and fatigue during the first year ofbereavement. Most participants reported experienc-ing relief fixim previously exacerbated symptoms(for example, hypertension), and a small numberdiscussed the onset of new physical symptoms.Twoparticipants' words illustrate how bereavement af-fected their health with regard to sleep disturbanceand other symptoms:

I have trouble sleeping. I hadn't been sleepingwhen he was dying and then for many monthsI would wake up on schedule at 2 a.m., 4 a.m..and 6 a.m. the way I did when he was sick andI had to give him some kind of care. 1 still didn'tsleep even last night really. I slept until 4-ish andI've been up ever since.

* « mThis is my way of being stressed: I lost my hairin huge amounts after he died. And, I can't reallywalk well because I have a terrible pain in my leftleg.There is nothing wrong with my leg and I'vehad it off and on for the whole year now.

Overall, participants reported relief from the phys-ical burden of providing total care for a physically

dependent person and improvement in symptomexacerbations, but the loss affected some caregivers'sleep patterns for ,t long time after tlie death.

Psychological and Emotional Well-Being. Avariety of occurrences triggered overwhelmingemotional responses.These trigger events occurredwithout warning, stimulating vivid memories andoverpowering reactions. Trigger events includedsights (for example, photos, clothing), sounds (forexample, alarm, "his" music), and smells (for ex-ample, a favorite food), geographic locations (forexample, church, the grocery store), and fliniilyevents at which the person's presence was deeplymissed (for example, birtb of a baby, graduation).Responses included feeling flooded with emo-tions and a sense of deja vu or of being back inthe situation. Shopping became a trigger event forone daughter:

1 was walking through the grocery store and Icouldn't believe it. I glanced over at baby foodand my heart just went down in my stomach.1 wonder if it is ever going to stop; I associatethings that I see in the store that I would buyfor Mom and I automatically think about her.For the longest time everywhere I looked, I wasreminded of Mom.

Participants also referred to intense emotionalresponses that accompanied thoughts of or con-versations about the person. These responses mostoften included tears, feelings of despair, sobbing,and being simultaneously happy and sad. It is im-portant to note that all participants became tearfulduring the second interview. Many reported thatthey cried whenever they talked about the personwho died. Some expressed feeling regret aboutsomething they were unable to do for the person.The following quote illustrates caregiver grief inbereavement: "This incredible sadness conies overme at times. I just stay with it. 1 say 'Good, I'm sad,I need to be sad.' I just let it just hurt me inside forawhile and then I'm over it." Caregivers' emotionalresponses to grief were overpowering at differenttimes during the first year after the person's death.For many participants, the emotion did not subsideand re-emerged as they talked about the person,butthey had grown to expect this and over time wereless surprised by their feelings and reactions.

Social Functioning. Some families became closer,whereas in others conflict was exacerbated. Likewise,

WAI.DROP / Caregifer Grief in Terminal Illness and Bereavement: A Mixed-Methods Study 203

Page 8: Caregiver Grief in Terminal Illness and Bereavement: A Mixed … · 2018-11-02 · grief in terminal illness and (2) how do the features of caregiver grief change after the death?

Normal anticipatory mourning has beenfound to accompany an impending loss as anemotional attachment is being relinquished.

for some participants relationships with friends,neighbors, and coworkers provided intensified so-cial support, whereas for others, the social supportnetwork offered minimal support.Two participantsillustrate these social dynaiiiics.One explained, "Af-ter Mom's death we got much closer. For a wholeyear on Sunday afternoon, we would get togetherat Mom s house to clean closets, cupboard.s, and thebasement. We'd have dinner and share memories. Itwas wonderful." Another described the experiencethis way:"People would invite me for dinner but Iwould feel overwhelmed because they were placeswhere she would have been with me. I'd have toexcuse myself and go outside to cry. I stopped ac-cepting invitations because I couldn't stand it."Afterthe death, participants' relationships with othersinfluenced their grief. Feelings of acceptance andsupport or distance and intolerance shaped thenature of their responses.

DISCUSSIONThe results of this study add to knowledge of nor-mal anticipatory grief and mourning responses byproviding a longitudinal view of caregivers' griefthrough the experiences of being in a close relation-ship with someone who is terminally ill, watchingthe person lose function, and providing hands-oncare wbile simultaneously preparing emotionally foran approaching death. Normal anticipatory mourn-ing has been found to accompany an impending lossas an emotional attachment is being relinquished(Rando,2{H)0).This distinct type of grief occurs overtitne and in parallel with tbe terminally ill person'sillness and continues after the death.

In this study, caregiver grief during end-stagecare was a state of heightened responsiveness: anxi-ety, depression, and feeling nervous, restless, fearful,and tense while also having trouble remembering,concentrating, and getting things done. Caregiversfelt intense emotions, primarily a merger of sadnessand anger.These ftndings suggest that the features ofcaregiver grief are directly linked to the nature of anadvancing illness (for example, increasing physicalneeds) and tbe sometimes dramatic exacerbation ofsymptoms such as pain, restlessness, and confusion.

which contribute to an intense and overwhelmingsituation tbat can make the caregiver feel on edgeand responsible while simultaneously facing an ap-proaching death.

Following the deatb, caregiver grief became astate of sustained reactivity: Overall distress wasdiminished, but the number of positive symptomswas not significandy different. Anxiety and ho.stilitydecreased significantly, but loneliness, sadness, andtears increased; overwhelming responses were trig-gered by unforeseen visual or auditory reminders ofthe person. Having trouble concentrating, remem-bering things, and getting things done continued.At hoth times, caregiver grief was highly influencedby tbe social context. Relationships with family andfriends {whether more cohesive or conflicted) andheightened interpersonal sensitivity shaped caregiv-ers' responses. Sleep disturbances were also presentthroughout the process. Beginning during end-stagecare when around-the-clock care was often needed,sleep patterns continued to be changed, later beingaffected by psychological factors that prevented sleepor caused awakening.

Building on the existing caregiving literature,these fmdings can be used to extend botb tbe reliefand complicated models of caregiver grief (Bass& Bowman, 1990; Bernard & Guarnaccia, 2003).Portraying caregivers' responses to the death asrelief from or exacerbation of distress, these modelsconceptualize adaptation as overall flinctioning.Thefmdings of this study illustrate that although thephysical strain ceased when tbe care recipient diedand overall distress, anxiety, and hostility were sig-nificantly diminished,some symptoms remained thesame and others became intensified. Tbe sustainedpresence of sadness and tears, together with ongoingsleep disturbance and reactivity, can be viewed assymptoms of grief.

In addition, tbese results add to knowledge abouthow caregiver grief begins early and continues longafter the death, underscoring the importance ofbothaccurately assessing and effectively intervening withcaregiver grief (Meuser & Marwit, 2001; Sanders &SaItzCorIey,2003).

This study had several limitations. The samplewas small and lacked racial or ethnic diversity. Re-sponses to illness and loss are strongly influencedby cultural factors; thus, a larger and more diversesample would have provided a deeper view ofcaregiver grief. Although concepts from the bio-psychosocial model guided this study, grief is most

2U4 Health &SodalWork VOLUME 32, NtJMBER 3 AUGUST 1007

Page 9: Caregiver Grief in Terminal Illness and Bereavement: A Mixed … · 2018-11-02 · grief in terminal illness and (2) how do the features of caregiver grief change after the death?

commonly understood as an emotional responseto death. Study participants were asked about theirgrief in general, but they were not specificallyquestioned about changes in their physical health.Exploring caregivers' perspectives about how theirhealth was affected would have provided importantadditional information, especially as earlier studieshave established a connection between caregivingand mortality (Schulz & Beach. 1999).

IMPLICATIONS FOR PRACTICEThese results underscore the importance of assess-ment beyond overall function, with clinical attentionto symptom clusters in caregivers. Identifying andassessing the distinct features of caregiver grief is animportant component of social work practice withpeople who are caring for a terminally ill person.Caregivers may not identity their distress as grief,especially while they are still engaged in caregivingresponsibilities, but they may wonder what is hap-pening and why they feel so sad and as though theyare going crazy. Practitioners can help normalizethese responses by educating caregivers about howtheir responses parallel end-stage care, death, andadaptation to loss. In addition, social workers canattend to and help caregivers understand that theirexperiences providing end-stage care may havelong-term effects (for example,sensory experiencescan trigger a flood of memories). Social workersin nursing homes, hospice, home health agencies,community-based oncology or primary care clin-ics, and hospitals can use these findings to supportthe importance of making regular supportive andtherapeutic contact with caregivers during thecourse of a terminal illness and after the personsdeath. Recently developed standards tor social workin end-of-life care provide additional guidance forpractitioners who encounter caregiving families inhealth care as well as other settings (National As-sociation of Social Workers, 2003),

REFERENCESAnderson, H. Downing, G, M., &: HillJ. (1996). Palliative

performance scale (I'PS): A new tool.Journal ofPatIialii>eC,m;2!,5-\\.

Barry, L- C-. & Prigerson. H. G. (2002). Penipectives onpreparedness for a death among bereaved persons.Connectinit Mfdicmc. 66, 691-696.

Bass, D. M., & Bowman, K. (1990).The transition fromcaregiving to hereavenientiThe relationship of care-related strain and adjustment to death. Geroniotogisi,30.35^2.

Bernard. L. L., & Guarnaccia, C. A. (2003).Two modelsof caregiver strain and bereavement adjustment: Acomparison of busband and daughter caregivers

of breast cancer hospice patients. Gerontologisl, 43,80S-816.

Cameron,J,!., Franche. R. L., Cheung, A. M.,&: Stewart,D. E. (2002). Lifestyle interference and emotional dis-tress in family caregivers of advanced cancer patients.Cancer. 94,b2\-h21.

Carr, D., House,J. S.,Wortman. C , Neesc, R., & Kessler.R. C. (2001). Psychological adjustment to suddenand anticipated spousal loss among older widowedpersons,J(j|jrmi/s oj Gerontolo}iy Scries B: Pfyi-hithi^iciitSciences and Social Scietices, 56B, S237-S248,

Chen.J. H.. Bierbals. A.J,, Prigerson. H, G.. KasI, S.V,Mazure. C. M., & Jacobs, S. (1999). Gender differenc-es in the effects of bereavement-related psychologicaldistress in health outcomes. Psychological Medidtie, 29,367-3«0.

Chentsova-Dutton,Y., Shucter, S., Hutchin, S., Strause, L.,Burns. K,, Dunn, L,. Miller, M., & Zisook. S. (2002).Depression and grief reactions in hospice caregiv-ers; From pre-death to 1 year afterwards. JoHfna/o/"Affeciiiv Disorders, 69,53-60.

Derogatis, L, K, (1993), Brief Symptom Inveniory.Minneapolis: National Computer Systems.

Faschingbauer.X, DeVaul, R. A., &• Zisook. S. (1987).TheTexas Revised Instrument of Grief In S, Zisook(Ed,), Biopsycliosocial aspects of hereai'ement (pp, ] 11 -124). Washington. DC: American Psychiatric Press.

Klass, D., & Walter.T (2001). Processes of griev-ing: How bonds are continued. In M. S. Stroebe& R. O. Han.«on (Eds.). Handbook of hcreaire-ttietit research: Conseijueiices. copiiit;, dud care (pp.431—448). Washington, DC: American Psycholc^calAssociation.

Kramer, B.J. (1997), Gain in tbe caregiving experi-ence: Where are we? What next? Geroittologisi, 37,218-232.

Loscalzo, M.,& Brintzenhofeszoc, K. (1998). Brief crisiscounseling. In J. C, Holland (Ed,), Psycho-oncology (pp,662-675), New York: Oxford University Press.

Marwit, S.J., & Meuser,T. M. (2002). Development andinitial vabdadon of an inventory to assess griefin caregivers of persons with Alzheimer's disease.GcrorUohfjist, 42,751-765.

Meuser.T. M., & Marwit, S.J. (2001). A comprehensive,stage-sensitive model of grief in dementia caregiving.Gerontologist. 41, 658-670.

Miles, M. B., & Huberman, A. M. (1994). Qualitative dataanalysis.Thousand Oaks, CA: Sage Publications.

Mullan.J.T (1992).The bereaved caregiveriA prospec-tive study of changes in well-being. Gfrontologist, 32,673-683.

National Association of Social Workers. (2003). NASWstandards for social work pmciice in palliative and end oflife care. Retrieved April 15,2004, from http://www.socialworkers,org/practice/ bereavement/standards/default, asp

National Comprehensive Cancer Network, (2003). Distressmanagement. Retrieved January 4, 2004, from http://www.nccn.org/professiouals/physician_gls/PDF/distress.pdf

National Hospice and Palliative Care Oi^nization. (2005).i\'RPCO's fads and figures—2005findings. RetrievedMay 23.2007. from bttp://www,nhpco.org/files/public/2005-facts-and-figures.pdf

Padgett. D. K. (1998), Qualitative methods in social woHere.se(irf/i.Tbousand Oaks. CA: Sage Publications.

Pinquart, M., & Sorensen, S. (2(103). Differences betweencaregivers and non caregivers in psychological healtband physical health: A meLi-analysis. Psychology andAging, 18, 250-267.

kando,TA. (2000),Anticipatory mourning:A reviewand critique of the literature. InT.A. Rando (Ed,),

WALDROP / Ctrfgitier Grief in Terminal Illness and Bereatvment: A Mixed-Methods Study 205

Page 10: Caregiver Grief in Terminal Illness and Bereavement: A Mixed … · 2018-11-02 · grief in terminal illness and (2) how do the features of caregiver grief change after the death?

Clinical dimensions of anticipatory mourning (pp. 1-17).Champaign, IL: Research Press.

Sanders. S..& Saltz Corley, C. (2003). Are they grieving?A qualitative analysis examining grief in caregiversof individuals with Alzheimer's disease. Social H'ork inHealth Care, J 7,2>5-5?>.

Schulz, R., & Beacb, S. R. (1999). Caregiving as a riskfactor for mortality:The caregiver health effects study.JAiVfA, 282, 22\5-22]9.

Schulz, R., Beach, S. R., Lind, B,, Martire, L. M.. Zdaniuk,B., Hirsch, C,Jackson, S., & Burton. L. (2001).Involvement in caregiving and adjustment to deathof a spouse: Findings from the caregiver health effectsstudy.JAMA, 285, 3123-3129.

S6rensen, S., Pinquart, M., & Duberstein, P (2002). Howeffective are interventions with caregivers? An up-dated meta-analysis. Gnontologisi, 42, 356-372.

Stroebe, M.. Hansson. R. O., Stroebe,W, & Schut, H.(2001). Introduction: Concepts and issues in contem-porary research on bereavement. In M. Stroebe, R. O.Hansson, W. Stroebe, & H. Schut (Eds.), Handbook ofbereavement research: Consequences, coping, and care (pp,3-22). Washington, DC: Ajnerican PsychologicalAssociation,

Tashakkori, A,,&;Teddlie, C. (1998). Mixed methodol-0}^': Combining qualiiatiiv and ijiianlitative approaches.Thousand Oaks. CA: Sage Publications,

Vigano, A.. Bruera, E.,Jhangri, C. S., Newman, S. C ,Fields, A, L., & Suarez-Ahnazor, M. E. (2000). Clinicalsurvival predictors in patients with advanced cancer.Archives of Internal Medicine, 160.861-868.

Walker, R.J., & Pomeroy, E, C, (1996). Depression orgriet?The experience of caregivers of people withdementia. Health & Sodal iVork, 27,247-254.

Deborah P. Waldrop, PhD, ACSW, IMSW, is associateprofessor. School c>f Social IVorb, State University of NewYork,Uiiii'ersity at Buffalo, 685 Baldy Hall, Box 601050, Buffalo,NY 14260-1050; e-mail: du^tdrop@l)uffalo.edu.

Original manuscript received July 12, 200dFinal revision receiwed March IS. 3006Accepted June 20. 2006

PRACTICE FORUM

Have you worked with a practice inno-vation readers should know about?The

Practice Forum editor can help you developyour insights into an article for this column.Describe your innovation in eight double-spaced pages or fewer and send to PracticeForum, Health & Sociai Work, NASW Press,750 First Street, NE, Suite 700, Washington,DC 20002-4241,

—^

l ENASW PRESS

ERSPECTIVES ONlODUCTIVE

SociAl WoRk

Lenard 111.Editor

The first in ihe NASW PressPractice Series on Aging,this challenging book laysout a lar-reaching set ofcontemporary functions thatsocial workers will need toassume in advocating forelder rights and quality oflife. Focusing on the newcohort of older adults and those that will follow them -the leading edge baby boomers who are nearing retirement- the book expands our professional penpective on workingwith elders who are educated, active, mobile, financiallysecure, and engaged. It examines social work practice innontraditional practice areas and settings, including physicalfitness, spirituality and religion, the workplace, voluntarism,and education and learning.

Perspectives on Productive Aging is a must for praaitioners,faculty, and students who work wtth older adults, anda valuable tool for gerontological social work continuingeducation workshops and community seminars In agencies.

ISBN: 0-87101-377-0.2005. Item #3770, $44.99.

CHLL1-000-227-3590Eon MORE iNEonMHTiaiy ON flvniiiiBiiiTy

Visit our web site at: www.naswpress.orgto learn about other NASW Press publications

#NASW

206 Health & Social Work VOLUME 51, NUMBER 3 AUGUST 2007

Page 11: Caregiver Grief in Terminal Illness and Bereavement: A Mixed … · 2018-11-02 · grief in terminal illness and (2) how do the features of caregiver grief change after the death?