Journal of Advanced Nursmg, 1993,18, 39-45
Head-injured survivors: caregivers andsupport groups
Sonia Acorn RN PhDAssistant Professor, School of Nursing, The University of British Columbia, TF 301-2211Wesbrook Mall, Vancouver, British Columbta, V6T 2B5, Canada
Accepted for publication 28 Apn! 1992
ACORN S (1993) Journal of Advanced Nursmg 18, 39-45Head-injured survivors: caregivers and support groupsThe purposes of this study were to assess the needs of caregivers of head-mjuredsurvivors and the availability, use and helpfulness of support groups in meetingthese needs Demographic data on characteristics of the caregivers and of thehead-mjured survivor were also collected The majority of the caregivers weremothers of head-injured males and provided care for an average of 6 yearsSixteen of the respondents did not attend a support group, mainly due to theunavailability of support groups m their area of residence Support groups weremost helpful in meeting educational and psychological needs of caregivers Thefindings suggest the need for additional support groups, especially m smallercommunities, for additional educational content m support groups and for respitebeds
INTRODUCTION
There are approximately 50 000 individuals m Canadaannually who suffer a head injury (or 250 per 100 000)(Vargo et al 1986) For an estimated 20 000 to 30 000 ofthese mdividuals, the head trauma is senous (Ivan 1984)The effects of head injury can have profound effects on thephysical and emotional well-being of the survivor, and onfamily relationships (Brooks 1991)
The cnsis of head injury involves the family as well asthe individual When the survivor returns home fromhospital, family members must care for an individual withneuropsychological, behavioural and physical changes andthey are rarely equipped to meet this challenge (Blazyk1983, Livingston 1990) The family expenences changes mmantal relationships, daily routine and social activitieswhich tax the strength of even the most intact famibes(Livingston 1990, Mauss-Clum & Ryan 1981, Rogers1984) There is a gradual process of social withdrawal(Flonan et al 1989) leading to mcreased conflict and tensionwithm the family
Community-based care
The current trend toward community-based care withheavy family involvement has generated an mcreasedinterest m the role of family caregiver support groupsSupport groups are effective in providing emotionalsupport and information, reducing social isolation, decreas-ing the burden of caregiving and assistmg with the adjust-ment from hospital to home (Campbell 1988, Frye 1982,1987) Campbell (1988) assessed the needs of relativesbving with a head-injured survivor and the usefulness ofsupport groups in meeting these needs Support groupswere reported to be useful m meeting educational needs,for example, information on the effects of head injunes, andin meeting psychological needs, for example, being able totalk about one's feelings A limitation of the Campbellstudy was the small sample size of 14
The need for information about the consequences of headmjury has been documented by Mauss-Clum & Ryan (1981)Identified educational needs included (a) a clear explanationof the patient's condition and treatment, (b) discussion andrealistic expectations, and (c) emotional support
39
S Acorn
Followmg hospitalization, educational needs continue asthe head-mjured (HI) survivor and family move forwardthrough an extended rehabilitation penod With themcreased survival rate of individuals with head mjunes andthe formation of support groups, there is a need to determinehow these groups can assist the family
THE STUDY
The purpose of this exploratory—descnptive study were (a)to determine the needs of the family (caregiver) while canngfor a head-mjured person at home, (b) to assess the avail-abihty, use and helpfulness of support groups in meeting theidentified needs, and (c) to document the demographics of aselect group of HI survivors and their family caregivers
METHODS
Participants and procedure
A survey questionnaire was mailed to 100 families through-out the province of Bntish Columbia (BC) This was thetotal number of families hsted with the BC Head InjuryAssociation and known to be canng for a head-mjuredrelative at home Anonymity was assured as the question-naires were mailed by the Head Injury Assoaation andsubjects were advised that they were under no obligationto participate m the study and could omit questions if theyso desired A follow-up letter was sent by the BC HeadInjury Association 3 weeks after the ongmal mailmgFifty-one (51%) of the families responded, with 42 (42%)questionnaires used in the analysis Nine returned ques-tionnaires were not used, either because the HI relative wasno longer Lvmg at home or large parts of the questionnairewere incomplete
Instrument
The questionnaire was adapted from one developed byCampbell (1988) The first part consisted of 22 items 15requesting information on demographics, four items onsituational influences and three items elicitmg mformationon causes for worry regarding the care of the HI relative
The second part of the questionnaire consisted of 17items addressing three areas educational needs, for example'to have information on the effect of head mjunes' (eightitems), psychological needs, for example 'to be able to talkabout my feelings' (five items), and stress managementneeds, for example 'to have time and activities for myselfoutside the home' (four items) First respondents were askedto identify which of the items were important to them
Respondents were then asked if attendance at a supportgroup was or was not helpful to them m meeting theidentified needs An invitation was extended to provide anyadditional comments which would assist m understandingthe needs of famihes of HI individuals
The ongmal Campbell (1988) instrument was developedfrom information gathered in a review of the literature onthe effects of severe HI on relatives The instrument wasexamined for face and content vahdity by three nurseclinicians who worked with severely head-injured patientsand their families, a minister who counselled severely head-injured individuals and their families, and one master ofscience degree candidate m the field of rehabilitationnursing who also had a severely head-mjured sibling Thereliability of the instrument was not tested
For the present study, the onginal mstrument was exam-ined by rehabilitation nurses who work with HI patientsand their families and suggestions for additional items weremade in the demographics section The instrument wasjudged by these nurses to have face and content validityThe revised instrument was then reviewed for clarity,effectiveness of instruction and overall presentation by agroup of baccalaureate nursing students, and editonalchanges were made as a result of their suggestions
RESULTS
The analysis consisted of descnptive statistics, providingfrequencies and percentages, wntten comments weresummanzed and categonzed into similar topics
Caregivers cmd care recipients
Twenty-seven (64%) of the caregivers were mothers canngfor a HI son (Table I) The majonty of the caregivers werein the 40-49 age group, had a high school diploma, and ayearly income of $20,000 or under Twenty-nine (69%) ofthe caregivers worked outside the home, of whom nineworked fiiU time (Table 2) Nineteen (45%) reported thatthey were the sole caregiver and the time spent in care-givmg ranged from 1 hour per week to more than 30 hoursper week
The most frequent age of the care reapients (HI survivor)was between 21 and 35 years (Table 3) The majonty hadnever mamed and had a high school education The HI hadoccurred anywhere from 1 to 17 years previously, with 6years as the average
Stressful issues/concerns for the future
The most stressful current issues for the caregiver weredecreased memory of the survivor, problems with deasion
40
Head-injured survivors
Table 1 Charactenstics of the caregivers (« = 42) Table 2 Situational influences
Gharactenstic Frequency Percentage Vanable
Age (years)
< 2 930-3940-4950-59> 6 0
GenderMaleFemale
Relationship to HI relativeSpouseMotherFather
SiblingCurrent mantal status
Mamed/common-lawWidowedDivorced or separatedNever mamed
Mantal status at time of injuryMamed/common-lawWidowedDivorced or separatedNever mamed
Educational levelElementary schoolHigh school diplomaCollege diplomaUniversity degreeOther
Yearly income ($)^20 00020 000-40 000> 40 000Data missing
1
7
21
94
2
40
1227
21
34
2
5
1
3812I
4
17
4
3
4
1913
73
2 416 750 0214
95
4 895 2
28 564 3
4 8
24
8 1 0
4 8
1 1 9
2 4
90 5244 8
2 4
9564 3
957 1
9 5
45 231016 7
7 1
making, mood swings, and the long-lasting dependency ofthe survivor Additional issues identified were lack ofinitiative and motivation, alcohol abuse, loss of income ofthe survivor, decreased academic abilities, seizures, lack ofconcem for looks/poor groommg, personality changes,lack of good rehabilitation services, survivor not realizingthat there is loss of short-term memory and therefore livesin the past, finding the 'nght' caregiver, finding appropnaterespite care, and the loss of time for self (caregiver)
Concems most frequently expressed about the future ofthe survivor were what would happen to the survivorshould something happen to the caregiver, availability of
Frequency Percentage
Caregiver works outside homeYesFull-time (9)Part-time (20)No
People living in home excludinginjured person and caregiver
0-23-5
Number of people providing careexcluding primary caregiver
0
1-2
^ 3Hours per week pnmary caregiverspends canng for/assistmg/supervising injured relative
1-5
6-1011-2021-30> 3 0Data missing
29
13
357
19
194
8
4
3
2
205
69 0
310
83 316 7
45 245 2
95
19 0957 1
4 84761 1 9
community resources, and financial resources Additionalconcems were need for suitable employment, ability to liveindependently, chemical dependency, young survivor m anextended care facility with the elderly, ability to marry, needfor good group homes, and chronic severe headaches Themost womsome concem was over the survivor's future,should something happen to the caregiver
Support groups and their helpfulness
Subjects were provided with a list of 17 items identifyingeducational, psychological and stress-management issuesand requested to indicate whether or not the items indicateda need for them (Table 4) Results indicate high educationalneeds to leam more about the effects of the head injury, toleam about community resources, and to have questionsanswered honestly by health professionals The highestpsychological needs were to know what the future holds forthe survivor, to be able to talk about one's feelings, to feelthat there is hope, and to have emotional support
Sixteen (38%) of the respondents were not attending asupport group, 15 of these because there was no support
41
S Acorn
Table 3 Demographic charactenstics of the care reapient(head-injured relative) (n = 42)
Charactenstic Frequency Percentage
Age (years)< 1515-2021-2526-3536-45^46 yearsData missing
GenderMaleFemale
Current mantal statusMamed/common-lawWidowedDivorced or separatedNever marriedData missing
Mantal status at time of injuryMamed/common-lawWidowedDivorced or separatedNever mamedData missing
Educational levelElementary schoolHigh school diplomaCollege diplomaUniversity degreeOther (trade/tech)Data missing
Years since head injury< 11-43-9
10-1415-17
Years injured relative has livedat home
<55-9
10-14
27
1012461
3210
10—
229
1
13
281
16181331
6151263
27852
4 816 723 828 695
14 32 4
76 223 8
23 8—
4 869 0
2 4
310
66 72 4
38142 92 471712 4
14 335 728 614 371
64 319 01194 8
group in the area and one indicated previous attendance at asupport group hut had stopped going as more support wasbeing given than received The 24 who attended supportgroups found them to be most helpful in three areas having
questions answered honestly, receiving emotional support,and identifying community resources (Table 5) It shouldbe noted, however, that although the support groups weremost helpful in these three areas the number of respond-ents who indicated helpfulness was not as high as thoseindicating a need m the areas
It IS also important to note that in comparing the data inTables 4 and 5, the analysis was not able to discem that if anindividual identified a need m a certain area (Table 4),whether that same individual was included m the numberwho found the support group helpful in meeting that par-ticular need (Table 5) Support groups were perceived asless helpful in teaching methods of adjusting to thememory loss and behavioural changes of the HI individual,and providing information about financial resources
COMMENTS
Most participants took the time and initiative to provideadditional wntten comments which are summanzed underthe categories of caregivers, professionals and supportgroups
Caregivers
Comments on the needs of the caregiver to have some timeoff included 'the need for respite beds is cntical having aHI person at home makes one a pnsoner Not that we didn'tlove her, but that love is stretched to the limit at times andthe feeling can turn to hate' Another family wrote 'overthe years I could have used a break once in a while, maybe arespite bed' Other families wrote about the need for in-home help from professionals 'At home, staffing has been areal problem, fees from agencies are very high'
Professionals
Many commented on the poor communication betweencaregivers and health care professionals There was areported tendency of professionals to avoid talking aboutcertain aspects of the patient's future A strong concem wasexpressed about the lack of training of professionalsregarding people with HI
The treatment of the HI person and communication withrelatives by professionals was strongly cnticized 'Theprofessionals say all HI are different and then promptly tryto fit them all into one mould' 'There is an extreme lack oftraining in this held, and with the amount of people surviv-ing head trauma, I certainly hope the education and train-ing will improve I read everything I could find on head
42
Table 4 Caregivers' reportedneeds (n = 42)* (table formatrepnnted from Campbell C H(1988) Rehabilitation Nursmg13(6), with permission of theAssoaation of RehabilitationNurses, Skokie, Illinois60077-1057 Copynght1988 Association ofRehabilitation Nurses)
'Respondents were asked to identifyall items which pertained to theirsituation
Need
EducationalTo learn about physical careTo have questions answered honestlyTo learn effects of head injuryTo learn methods of adjusting to memory lossTo leam methods of adjusting to behaviouralchangesTo know where to find someone to help withphysical careTo obtain information about financial assistanceTo leam about community resources
PsychologicalTo know what the future holds for my relativeTo talk about my feelingsTo have help with mantal adjustmentsTo have emotional supportTo feel that there is hope
Head-injured survivors
Importance of need
NotImportant
«(%)5(12)2(5)3(7)2(5)
2(5)
4(10)6(14)1(2)
1(2)7(17)5(12)2(5)
1(2)
Important
n (%)14 (33)39 (93)38 (91)31 (74)
31 (74)
19 (45)28 (67)39 (93)
40 (95)34 (81)23 (55)38 (90)39 (93)
NotApplicable
«(%)23 (55)
1(2)1(2)9(21)
9(21)
19 (45)8(19)2(5)
1(2)1(2)
14 (33)2(5)2(5)
Stress managementTo have time and activities for myself outside thehome 5 (12)To have help in reorganizing family chores/activities 6 (14)To guide our family in communication skills 5 (12)To have support from a religious institution 14 (33)
35 (S3) 2(5)
28 (67)31 (74)14 (33)
8(19)6(14)
14 (33)
injuries and I ended up knowing more than the health careprofessionals'
Another family wrote of their expenence 'The lnabibtyof professionals to communicate with families openly andhonestly was seen as a fundamental problem' The pro-fessional people certainly should be more receptive andhonest with the families who have to deal with such atraumatic and devastating incident' and 'it is very import-ant that health care professionals answer questionshonestly'
Support groups
The lack of fjimily support groups m many rural areas wasfrequently mentioned The study participants offered manysuggestions for support group content Families need toknow what to expect, what's ahead for them, and requiretraining on how to care for and retrain the survivor in daily
life skills Families need to understand that the behaviour,on the part of the survivor, is not 'intentional' and theyneed to leam how to help the survivor set goals that can beaccomplished and to encourage them toward goal achieve-ment One wrote The crucial time for famibes is thefirst few months following the injury Help, information,advocates would be so valuable at that time' Where togo for services for the survivor was also identified as asupport-group concem
DISCUSSION
What emerged from the demographic data was a profile ofthe caregiver of the HI adult mothers, mostly in theirforties, canng for an HI son aged 21 to 35, who had sus-tained the HI anywhere from 1 to 17 years previouslyAlthough the findings cannot be generabzed to othersettmgs due to the small sample size, some companson to
43
S Acorn
Table 5 Helpfulness ofsupport groups (n = 24)*(table format repnnted fromCampbell C H (1988)Rehabilitation Nursing 13(6),with permission of theAssociation of RehabihtationNurses, Skokie, Illinois60077-1057 Copynght1988 Association ofRehabilitation Nurses)
'Respondents were asked to identifyall items which pertained to theirsituation
other findings appears warranted The fact that themajonty of the caregivers are female supports previousstudies (Niskala & Dewis 1989)
Previous research on caregivers of the elderly (Bunting1989), of those with Alzheimer's (Quayhagen & Quayhagen1988), and of those with multiple sclerosis (Niskala &Dewis 1989), indicates that the majonty of the caregiversare spouses In this study, due to the younger age group ofsurvivors, the majonty of the caregivers are mothersAlthough the majonty of the HI were males, the percent-age of female survivors (24%) was higher than that of otherstudies Holosko & Huege (1989) reported 10% female,Pnganto et al (1984) reported 17% female, Scherzer (1986)reported 22% female, and Tyerman & Humphrey (1984)reported 8% female
The findings suggest that support groups assist familiesto cope in certain areas with this major stressor in theirhves, a family member who has received a head injury, butthe findings also suggest that support groups could bemore helpful in these same areas Support groups assistedfamilies by providing emotional support, information on
Needs
EducationalTo learn about physical careTo have questions answered honestlyTo learn the effects of head injuryTo leam methods of adjusting to memory lossTo leam methods of adjusting to behaviouralchangesTo know where to find someone to help withphysical care
To obtain information about financial assistanceTo leam about community resources
PsychologicalTo know what the future holds for my relativeTo talk about my feelingsTo have help with mantal adjustmentsTo have emotional supportTo feel that there is hope
Stress managementTo have time and activities for myself outside thehomeTo have help m reorganizing family chores/activitiesTo guide our family in communication skillsTo have support from a religious institution
NotHelpful
«(%)5(21)4(17)4(17)9(38)
9(38)
7(29)8(35)6(25)
13 (54)4(17)8(33)4(17)5(21)
10 (42)
9(38)10 (42)7(29)
Helpful
n(%)6(25)
19 (79)16 (67)6(25)
6(25)
8(33)
9(39)17(71)
9(38)16 (67)6(25)
19 (79)16 (67)
6(25)
4(17)6(25)4(17)
NotApplicable
n (%)13 (54)
1(4)4(17)9(38)
9(38)
9(38)
7(25)1(4)
2(8)4(17)
10 (42)1(4)3(13)
8(33)
11(46)8(33)
13 (54)
community resources, and instilling a feeling of hope, thesefindings are consistent with those of Campbell (1988)Additional support groups are required in rural areas, as 15(33 7%) of the study sample do not have access to a supportgroup in their geographic area Support groups requirestructure m regards to educational content and shouldserve a combined education/support function
Goals of support groups
The goals of educational/support groups should be toprovide
1 educational information on caregiver skills, the effectsof head injuries, the development of coping skills,
2 information on how to access rehabilitative, financialand other needed services,
3 emotional support where families can discusswomes and concerns m a safe, accepting and supportiveenvironment,
4 soaal support where families can feel a sense ofbelongmg
44
Head-injured survivors
The participation of health care professionals m the
development and facilitation of these groups is warranted,
with the ongoing responsibility of the group clearly
centred in the community Health care professionals can
espeaally assist with developing the educational
component of educational/support groups
Future research
Future research needs to be directed toward evaluative
designs that allow for determining the effect of the group
intervention on vanables such as the well-being of the lay
caregiver and the family as a unit It is important to evalu-
ate the results of different interventions and thus develop a
deeper understanding of the efficacy of these interventions
Acknowledgements
Appreciation is extended to the Bntish Columbia Head
Injury Association for assistance in accessing the subjects
for this study and to the nursing staff of the G F Strong
Rehabilitation Centre for their advice and assistance with
the questionnaire development
Appreciation is extended to the Bntish Columbia
Medical Services Foundation and the University of
Bntish Columbia Humanities and Social Sciences Grants
Committee for funding this project
Especially appreciated are the caregivers of persons with
head lnjunes who participated in the study
References
Blazyk S (1983) Developmental crisis in adolescents followingsevere head injury Soaal Work in Health Care S (4), 55—67
Brooks D N (1991) The head-injured family Journal of Clinicaland Expenmental Neuropsychology 13(1), 155-188
Bunting SM (1989) Stress on caregivers ofthe elderly Advances
in Nursing Science 11(2), 63-73
Gampbell C (1988) Needs of relatives and helpfulness of supportgroups in severe head injury RehaMitation Nursmg 13(6),320-325
Flonan V, Katz S & Lahav V (1989) Impact of traumatic braindamage on family dynamics and functiomng a review BrainInjury 3{3), 219-233
Frye B (1982) Brain injury and family education needs Rehabili-tation Nursing 7(4), 27-29
Frye B (1987) Head injury and the family related hteratureRehabilitation Nursing 12(3), 135-136
Holosko M J & Huege S (1989) Perceived soaal adjustment andsocial support among a sample of head injured adultsCanadian Journal of Rehabilitation 2(3), 145-154
Ivan L P (1984) The impact of head trauma on soaety CanadianJournal of Neurobgical Sciences 11(4), 417-419
Livingston M G (1990)Effectson the family system In Rehabili-tation of the Adult and Child With a Traumatic Brain Injury(Rosenthal M, Gnfifith E, Bond M & Miller J eds), F A Davis,Philadelphia, pp 225-235
Mauss-Clum N & Ryan MR (1981) Brain-mjury and the familyJournal of Neurosurgical Nursing 13, 165-169
Niskala H & Dewis M (1989) Multiple sclerosis the well-beingof family caregivers Unpublished mjinuscnpt University ofBntish Columbia, School of Nursing, Vancouver
Pnganto G P, Fordyce D J, Zeiner H K, Roeche ] R, Pepper M& Wood B G (1984) Neuropsychological rehabihtation afterclosed head injury in young adults Journal of Neurology,Neurosurgery, and Psychiatry 47(5), 505—513
Quayhagen M P & Quayhagen M (1988) Alzheimer's stresscoping with the caregiver role The Geroniologisi 28(3),391-396
Rogers P (1984) Family crisis following head injury a networkintervention strategy Journal of Neurosurgical Nursing 16,343-346
Scherzer PB (1986) Rehabihtation following severe headtrauma results of a three year program Archives of PhysicalMedicine & Rehabiliiaiion 67,366-372
Tyerman A & Humphrey M (1984) Changes in self conceptfollowing severe head injury International Journal of Rehabili-tation Research 7(1), 11-23
Vargo F, Dennis S, Ebert T, Wolfe S, Mueller H & Brintnell E S(1986) A social-vocational rehabihtation program for closedhead injured adults Rehabiliiaiion Digest 17(2), 7
45