Social networks and secondary health conditions: The critical secondary team for individuals with spinal cord injury.

2012·0.26 MB·English

by  Guilcher, Sara J. T.

Research article
Social networks and secondary health
conditions: The critical secondary team for
individuals with spinal cord injury
Sara J. T. Guilcher1, Tiziana Casciaro2, Louise Lemieux-Charles1,
Catharine Craven1,3,4, Mary Ann McColl5,6, Susan B. Jaglal1,3,7,8
1Institute of Health, Policy,Management & Evaluation, University of Toronto, Toronto, Ontario, Canada, 2Rotman
School of Management, University of Toronto, Toronto, Ontario, Canada, 3Toronto Rehabilitation Institute,
University Health Network, Toronto, Ontario, Canada, 4Department of Medicine, University of Toronto, Toronto,
Ontario,Canada,5CentreforHealthServicesandPolicyResearch,Queen’sUniversity,Kingston,Ontario,Canada,
6Department of Community Health and Epidemiology and School of Rehabilitaion Therapy, Queen’s University,
Kingston, Ontario, Canada, 7Graduate Department of Rehabilitation Science, University of Toronto, Toronto,
Ontario, Canada, 8Department of Physical Therapy, University of Toronto, Toronto, Ontario, Canada
Objectives:Todescribethestructureofinformalnetworksforindividualswithspinalcordinjury(SCI)livinginthe
community,tounderstandthequalityofrelationshipofinformalnetworks,andtounderstandtheroleofinformal
networks in theprevention andmanagement of secondary health conditions (SHCs).
Design: Mixed-method descriptivestudy.
Setting: Ontario, Canada.
Participants: Community-dwelling adults with an SCI living in Ontario.
Interventions/methods: The Arizona Social Support Interview Survey was used to measure social networks.
Participants were asked the following open-ended questions: (1) What have been your experiences with your
health care in the community? (2) What have been your experiences with care related to prevention and/or
management of SHCs?, (3)What has been the role of your informal social networks (friends/family) related to
SHCs?
Results:Fourteenkeyinformantinterviewswereconducted(6men,8women).Theoverallmedianforavailable
informal networks was 11.0 persons (range 3–19). The informal network engaged in the following roles: (1)
advice/validating concerns; (2) knowledge brokers; (3) advocacy; (4) preventing SHCs; (5) assisting with
finances; and (6) managing SHCs. Participants described their informal networks as a “secondary team”; a
critical and essential force in dealing with SHCs.
Conclusions:WhilenetworksaresmallerforpersonswithSCIcomparedwiththegeneralpopulation,theseties
seems to be strong, which is essential when the roles involve a level of trust, certainty, tacit knowledge, and
flexibility. These informal networks serve as essential key players in filling the gapsthat exist within the formal
health caresystem.
Keywords:Socialsupport,Healthcare,Communitynetworks,Spinalcordinjuries,Secondarycomplications
Introduction Canada, approximately 44000 individuals currently
Spinal cord injury (SCI) involves significant change(s) live with traumatic SCI1,2 and approximately 1100
with motor, sensory, and/or autonomic functioning, new cases occur each year,3,4 whereas higher incidence
and is associated with high levels of disability.1 In and prevalence rates are reported in the United States
of America (USA) with 12400 new cases per year and
Correspondenceto:SaraJ.T.Guilcher,InstituteofHealth,Policy,Management an estimated 259000 prevalent cases.5 Advances in
&Evaluation,UniversityofToronto,Toronto,Ontario,M5G1V7,Canada.
Email:[email protected] roadside management, early acute medical therapy
©TheAcademyofSpinalCordInjuryProfessionals,Inc.2012
MOREOpenChoicearticlesareopenaccessanddistributedunderthetermsof
theCreativeCommonsAttributionLicense3.0
DOI10.1179/2045772312Y.0000000035 TheJournalofSpinalCordMedicine 2012 VOL.35 NO.5 330
Guilcheretal. Socialnetworksandsecondaryhealthconditions
andsurgicaldecompression,andadvancesinrehabilita- suchastrust,norms,andnetworksthatcanimproveeffi-
tion care have contributed to increased life-expectancy ciency of society by facilitating coordination and
and frequencyof community discharge6 with the mean cooperation for mutual benefit”(p. 66),23 is an impor-
survival time reported to be more than 30 years.7 tant construct in understanding social context.
While more individuals are surviving initial injury, Broadly, social capital is a multi-faceted construct that
they are predisposed to multi-system impairments that relatestosocialrelationshipsandtheresourcesobtained
can lead to the development of serious secondary through these relationships.24
health complications (SHCs). These include respiratory Social networks are a key building block to social
impairments and related infections, urinary tract infec- capital.25,26 Studying social networks, both formal and
tions(UTIs),respiratoryinfections,heartdisease,osteo- informal networks of care, as well as the pattern of
porosis, upper extremity overuse injuries, sleep theirinteractions,hasbeenusefulinunderstandingfrag-
disorders, sexual disorders such as erectile dysfunction mentationofcareinotherpopulationswithchroniccon-
and ejaculation among men, pressure ulcers, chronic ditions, such as mental health, who have high health
pain, fatigue, depression, and suicide.8,9 While many care utilization.27–33 For example, integration of
of these SHCs are preventable and/or responsive to mentalhealthservicesinthecommunityhasbeenchal-
appropriate primary care management,9 they are pur- lenging, as reflected by the “revolving door” phenom-
ported to be key contributors for re-hospitalization enon.34 This revolving-door concept is an indicator of
and/or death in the post-acute phase.10–13 fragmented care and refers specifically to bounce-back
These high utilization rates of health care ser- situations whereby patients have four or more admis-
vices11,14–17 suggest that care needs in the community sions to inpatient services within a short time period
are not being met for this population. Given the (i.e. often ayearor two).35
reduced lengths of inpatient rehabilitation stay, There is evidence to suggest that mental health care-
persons with SCI often require outpatient community giving networks can influence mental health care
services to manage SHCs that have not stabilized at utilization and negative mental health outcomes.27–32 In
the time of indexdischarge.18 particular, social capital measures such as network size
The shift from centralized to regionalized care has and function have been suggested to influence mental
increased responsibility to individuals and their infor- health care use.28,29,32 For example, Pescosolido
mal care networks, especially for those who are most etal.28,29investigatedformalandinformalnetworksand
vulnerable to navigating the health care system.19,20 patternsofmentalhealthcareuseforlowincomePuerto
Formal care providers are usually provided by paid Ricans with mental health problems. Individuals with
medicallytrainedprofessionalssuchasphysicians,phys- larger and more supportive informal networks of care
ical therapists, occupational therapists, nurses, speech had decreased visitsto formal mental health providers.
language pathologists, social workers, psychologists, Similarly, Bonin et al.,32 using the social network
and personal attendants. Informal care providers are theory, examined mental health utilization among
typically unpaid individuals with minimal previous homelessindividualslivinginQuebec.Theseresearchers
formal training in health care.21 In contrast to formal were interested in examining factors that influenced
providers, informal care providers typically have a pre- health care use among those who were impoverished
existing relationship with the individual for whom the with a mental health disorder in a universal health
care is being provided. Informal care can involve tasks care system. With the exception of illness history,
suchasmanagement (organizationandreferrals),advo- Bonin et al.32 identified that social networks, environ-
cacy of care, assistance with cooking, shopping, clean- mentalcharacteristics,andpatientdemographicsallsig-
ing, household maintenance, mobility, community nificantlypredictedutilizationofmentalhealthservices.
participation, basic daily grooming, advice, and Boninetal.’s32findingssuggestthattheapplicationof
emotional support.21 the social network theory to identify factors associated
Despitethisshiftinhealthservicedeliverytothecom- withhighhealthcareusemaybebeneficialforstudying
munity, to date there is a gap in the SCI literaturewith other vulnerable populations with chronic care needs,
respect to understanding the formal and informal care- such as those with SCI. Understanding these dynamic
giving networks as they relate to the prevention of interconnected factors such asthe structure of care net-
SHCs. Understanding the extent to which social works, the linkages within and between networks, and
systems influence health is just as critical as examining their overall function, especially for complex popu-
the more bio-medical risk factors of illness.22 Social lations that interact frequently with the health care
capital, defined as “features of social organization, environment are important as a means to improve
331 TheJournalofSpinalCordMedicine 2012 VOL.35 NO.5
Guilcheretal. Socialnetworksandsecondaryhealthconditions
integrationofcare.28,29,33,36Thismethodologyhasbeen
usefulinunderstandingfragmentationofcaresuchthat
recommendationstoimprovetheintegrationofcarefor
the SCI population at the individual, provider, and
policy level can then be made.
Implications of research
We currently know that individuals with SCI have sig-
nificant secondary complications and high health care
utilization.SHCscontinuetobeproblematicinapproxi-
mately 20% of this population37 and with more than
50% self-reporting spasticity, pain, bladder infections
Figure1 ConceptualframeworkbasedontheNetwork
inthepastyear,andforseveralSHCsincludingpressure
EpisodeModel
ulcers and autonomic dysreflexia, the odds of develop-
ing these SHCs increased per year post injury.9
Owing to geographical and accessibility limitations,
Despite the relatively low prevalence of SCI, the
the interviews were conducted over the telephone and
burdens imposed on the individual and health care
audio-recorded. The consumer interviews ranged from
system are significant, as demonstrated by high health
60 to 90 minutes in length.
care utilization, decreased quality of life, and consider-
able financial costs.2,38
Conceptual framework: Network Episode Model
Recently,asystematicreviewwasconductedexamin-
We used Pescosolido’s (1991) Network Episode Model
ingtheroleofsocialsupportandsocialskillsforpersons
(NEM) as a conceptual guide for this study (see
with SCI.39 The authors concluded that, in general,
Fig. 1),40 as this model acknowledges the interdepen-
socialsupport ledtooverallbetterhealthandfunction-
dencyandsocialcontextthatexistsbetweenindividuals,
ing for persons with SCI.39 Thus, as this review high-
networks, and their journeys of health care. The NEM
lights, understanding care provision and social
has four domains, social context (environment), social
networks in the community is important. While we
support system (informal networks), the treatment
know that SHCs are likely influencing health care use,
system (formal networks) and the illness career
wedonotknowwhatcommunityfactorsareassociated
(journey of care). Based on the social network theory,
with these SHCs.
the NEM highlights the importance of community
Thisstudyaimedtoprovidecomprehensivedescriptive
networkstructures,processes,andrelatedfunctionalout-
analysesofcommunitynetworksforcommunity-dwelling
comes as dynamic components that influence health
individualswithSCI. Thisapproach will highlightinfor-
behaviorsandhealthoutcomes.40Therearefourunder-
mal network characteristics and how networks influence
lying assumptions to this model, (1) communities
the journeyof care, defined as a complex series of inter-
contain care providers; (2) process of care is dynamic,
actions that comprise the processes of health care, as it
occurs over time, and develops into patterns and path-
relatestoSHCmanagement.40,41
ways; (3) underlying the processes of health care use
are social networks; and (4) social networks may influ-
Objectives
ence the interaction with the care providers.40
Specifically, this study will:
While the NEM does not negate the role of the indi-
1. describe the structure of informal networks (e.g., size
and type of care providers) for individuals with SCI vidualasanactiveagent,itrecognizesthatsocial influ-
living in thecommunity; and encescanbeasequally,ifnotmoreimportant.40Forthe
2. understand the quality of relationships of informal purpose of the present exploratory study, we focused
networks specifically on the “population characteristics” and
3. understandtheroleofinformalnetworksinthepreven- “informal networks” domains of the NEM. We
tion andmanagementofSHCs. focused in depth on these two domains given the time
intensive nature of measuring social networks and
effortsto reduce responder burden.
Methods
We used a mixed method descriptive approach.42 Theoretical position
In-depth semi-structured interviews with community- Thetheoreticalapproachunderlyingthisstudywasthat
dwelling individuals with an SCI were conducted. of relativist ontology, that is, previous a priori
TheJournalofSpinalCordMedicine 2012 VOL.35 NO.5 332
Guilcheretal. Socialnetworksandsecondaryhealthconditions
knowledge helped inform assumptions but allowed for Table1 Interviewguideforopen-endedquestionswithkey
emerging themes to arise.43 The paradigm guiding this informants*
research question was a naturalistic interpretive one. 1 Whathavebeenyourexperienceswithyourhealthcareinthe
This multi-lens approach was concerned with under- community?
Probes:Whatmadeyourhealthcareexperienceeasier?
standing thesubjective,complexandcontextualexperi-
Harder?
encesof participants.44The contextual and constructed 2 Whathavebeenyourexperienceswithcarerelatedto
realities of each participant helped inform and reshape preventionand/ormanagementofsecondary
complications?
knowledge gained from the research inquiry.45 Probes:Whatmadeiteasier?Harder?
Furthermore, principles from Thorne’s interpretive 3 Whathasbeentheroleofyourinformalsocialnetworks
description methodology facilitated the scientific (friends/family)relatedtosecondarycomplications?
8 Isthereanythingelseyouwouldliketomentionthatwehave
inquiry, as this approach allowed for a priori assump-
nothadtheopportunitytodiscuss?
tions (e.g. network episode theory) to be synthesized
*Additionalprobeswereusedtofacilitatediscussionifneeded
withknowledgegainedfromdata,aswellasothertheor- suchas“Canyoutellmemoreaboutthat?Canyouspeakmore
etical and contextual health services clinical abouttheprocess?Howso?”
knowledge.45
within the past year (Spinal Cord Injury Secondary
Key informant recruitment
Complications Scale (SCI-SCS)).50 The SCI-SCS was
The recruitment strategy included purposeful snowball
instrumental as a probe for detailed discussion related
sampling for maximum variation in key informant
to how each of the identified SHCs was managed and
experiences.46 We specifically aimed to have fair rep-
the role informal networks played in these SHCs.
resentationacrossgender,levelofinjury(cervical,thor-
acic, and lumbar), and mechanism of injury (traumatic
Quantitative measures
and non-traumatic), as well as socioeconomic status/
Population characteristics: demographics and clinical
funding source for health care services (private pay-
characteristics
ments from motor vehicle accident compensation and
Demographic items included the following: age, sex,
public payment for services). We recruited from the
education, income, ethnicity, language, occupation,
community by advertising the study via the Canadian
employment status, marital status, area of residence
Paraplegic Association (CPA)-Ontario division’s (urban/rural), and insurance source for medical care.
website and email distribution. Semi-structured key
Clinical characteristics included items such as level of
informantinterviewswithcommunity-dwellingindivid-
injury, mechanism of injury, and date of injury.
uals with an SCI provided the primary source of data.
Key informants were at least 18 years of age as we
Social networks: formal and informal care networks
focused specificallyon adult experiences.
Formal care networks (e.g. physicians, rehabilitation
professionals, and alternative medicine providers) were
Informed consent
assessed using items from the CCHS.47 For example,
Approval for this study was obtained from the
“Not counting when you were an overnight patient,
University Health Network Research Ethics Board, as
how many times have you seen or talked on the tele-
well as the Universityof Toronto. All participants pro-
phone, about your physical, emotional or mental
vided informed consent prior to the interview.
health with… a family doctor…a specialist… a
Data collection nurse…a physical therapist…a psychologist…”
Key informant interviews with participants were Participants were asked to provide the initials of the
conductedusingasemi-structuredinterviewguidecom- care provider.
posed of a number of valid and reliable scales, open- TheASSISisasemi-structuredtoolthatconsistsofa
ended questions and potential probes (see Table 1 for seriesofquestionsthatasksaboutaperson’sperception
open-ended questions). Based on the NEM, a number of network size and the adequacy of the support
ofquantitativescaleswereusedtodescribesocio-demo- received (i.e. satisfaction and need). In particular, the
graphics and clinical characteristics of participants ASSISmeasuressixfunctionalareasofsocialnetworks:
(items based on the Canadian Community Health (1) material aid; (2) physical assistance; (3) intimate/
Survey (CCHS, version 3.1)47 and the Ontario Spinal private interaction; (4) guidance; (5) feedback, and (6)
Cord Injury Registry (OSCIR),48 social networks negative social interaction. This tool allows for the fol-
(based on CCHS and the Arizona Social Support lowing network properties to be measured: (1) network
Interview Schedule (ASSIS)),49 and history of SHCs size (including available and utilized social networks),
333 TheJournalofSpinalCordMedicine 2012 VOL.35 NO.5
Guilcheretal. Socialnetworksandsecondaryhealthconditions
(2) network composition, (3) support satisfaction, (4) validity, internal consistency (>0.80), and test–retest
supportneed,and(5)anysourcesofnetworkconflict.49 reliability (>0.60).50
TheASSIShasshowngoodtest–retestreliabilityforsize
oftheavailablenetworkwithcorrelationsrangingfrom Data analysis
0.70 (over 1-month period) to 0.88 (over 2 or more All key informant interviews were audio-recorded and
days).49,51 transcribed verbatim. Data analysis used an iterative
Thesurveystartswiththefollowingtext:“Inthenext constant comparative process involving descriptive and
fewminutesIwouldliketogetanideaofthepeoplewho interpretive analyses.43,46,52 Using a template analysis
areimportanttoyouinanumberofdifferentways.Iwill approach,53 a flexible coding structure was developed
be reading descriptions of ways that people are often based on the NEM, which allowed for free nodes
important to us. After I read each description, I will when emerging ideas or themes were identified. After
be asking you to give me the first names, the initials, each interview, the principal investigator (S.J.T.G.)
or nicknames of the people who fit the description. wrote detailed reflexive notes on major emerging
These people might be friends, family members, tea- themes, which were later discussed in detail with one of
chers, priests, ministers, doctors, or other people who the research investigators (S.B.J.). The principal investi-
you might know. If you have any questions about the gator (S.J.T.G.) coded all transcribed interviews. The
descriptions I have read, please ask me to try to make other investigators (S.B.J., L.L.-C., B.C.C., T.C., and
it clearer.” M.A.M.) independently reviewed a sample (n=3, 20%)
Foreach functional area, the following related to (1) and compared the emergent themes. Data management
size,(2)satisfaction,and(3)needwereaskedofapartici- wasfacilitatedusingNVivo9qualitativeanalysiscompu-
pant.Forexample,fortheintimateinteractiondomain: ter software, as well as SPSS (SPSS Inc, Chicago, IL)
(1) Size –“If you wanted to talk to someone about the Version 19fordescriptive quantitative analyses.
things that are very personal and private, who would
you talk to? Give me the first names, initials, or nick- Results
names of people who you would talk to about things Fourteen key informant interviews were conducted (6
that are very personal and private”, (2) Satisfaction – men and 8 women). Demographics of the sample are
“Howwouldyourateyoursatisfactionordissatisfaction shown in Table 2. The median age was 47.5 years
withthetimesyoutalkedtopeopleaboutyourpersonal (31–75). The median number of years post injury was
andprivatefeelingsduringthepastmonth?”(Response 18(rangeof4–49years).Approximatelyhalfofthepar-
options include very dissatisfied, moderately dissatis- ticipants had an injuryat the level of the cervical spine
fied, slightly dissatisfied, neither satisfied nor dissatis- (n=8). For mobility aids, approximately half of the
fied, slightly satisfied, moderately satisfied, or very participants used electrical wheelchairs (n=8), and
satisfied.), and (3) Need – “During the past month, the others used manual wheelchairs (n=6).
how much do you think you needed people to talk to Approximately a third of the participants had an edu-
about things that were very personal and private? Tell cation level of high school or less (n=4), associate’s
me which statement best describes your need, no need degree or bachelor’s degree (n=5), or graduate-level
at all, slight need, moderate need, great need, or very degree (n=5). Eight individuals lived with a spouse
great need.” and/or common-law partner, one individual lived with
apaid attendant, and five people lived alone.
Secondary health conditions The majorityof individuals (n=13) reported signifi-
The SCI-SCS-Modified is a 23-item measure of SHCs cant challenges with SHCs in the past year. In particu-
that impact health and physical functioning.50 lar, significant or chronic problems were related to
Modified from the longer 40-item Secondary pressure sores, muscle spasms, and pain. UTIs were
Complication Questionnaire (SCQ), the SCI-SCS was experienced in the last year for eight participants, five
designedtomeasurecomplicationsrelatedtoskin,mus- ofwhomreportedtheseinfectionstobemoderatetosig-
culoskeletal, pain, and bowel/bladder in the past year. nificantproblems.ThemeanscoreontheSCI-SCSwas
The measure uses a 4-point ordinal scale ranging from 15.3 (SD=8.2).
0(notexperienced/insignificantproblem neverlimiting
activity) to 3 (significant/chronic problem). Items are Composition of social networks
summed up and scores can range from 0 to 69, with Overall network size
the higher score reflecting greater problems with Using both the CCHS and ASSIS tools, the total
SHCs. The SCI-SCS has shown good convergent network size was calculated. The median network size
TheJournalofSpinalCordMedicine 2012 VOL.35 NO.5 334
Guilcheretal. Socialnetworksandsecondaryhealthconditions
Table2 Demographicsofparticipants(n=14) domains. However, with the exception of four partici-
pants, individuals only identified family and/or friends
Demographic/clinicalcharacteristic n
rather than formal health care providers within their
Mechanismofinjury social networks for the six functional areas within the
TraumaticSCI-motorvehiclerelated 4
ASSIS. Specifically, only three individuals identified
TraumaticSCI-nonmotorvehiclerelated 7
Non-traumaticSCI 3 paid health care professionals as members of their net-
Levelofinjury works within the functional areas of intimate/private
Cervical 8
as well as advice. All other participants only identified
Thoracic 5
Lumbar 1 informal care providers. Data analyses were conducted
Injuryseverity with both formal and informal networks; however,
Tetraplegia 8
given the small numberofformal health care providers
Paraplegia 6
Relationshipstatus identified in the ASSIS, the median values remained
Single/divorced 4
unchanged. Therefore, the following results will refer
Married/common-law 8
Dating 2 to only informal care providers (family and friends)
Livingstatus identified using the ASSIS.
Alone 5
Spouse/partner 8
Informal available networks
Paidattendant 1
Educationlevel Theoverallmedianforavailableinformalnetworkswas
Lessthanhighschool 1 11.0 (range 3–19). Networks were larger for social
Highschool 3
Associatesdegree/bachelordegree 5 support (median=6.5) and physical assistance
Master’sdegree 4 (median=4.0), followed by positive feedback
Doctoratedegree 1 (median=3.5), advice (median=3.0), material assist-
Familyincome(includesspouseifapplicable)
Under29000 3 ance (median=2.5), and intimate relations (median=
60–69000 1 2.5; see Table 4).
>100000 5
Declined 3
Informal utilized networks
Insurancefunding
Motorvehicleinsurance 2 The size of the utilized networks was considerably
Publicdisabilitysupport 8 smaller than the available networks. Utilized network
None 4
medians were largest for social support (median=5.5)
Employmentstatus
Returntowork–yes 7 and physical assistance (median=2.5). Only one par-
Returntowork–no* 7 ticipant reported using material assistance, the remain-
*Reasonsfornotreturningtowork(n=7):sixduetoSHCs,one ingsampledidnotusematerialsupport (median=0.0).
individualtookearlyretirement.
Perceived satisfaction and need
for participants was 16.5 (range 5–28), which includes In all six functional areas, participants reported being
family, friends, and health care providers. Table 3 very satisfied with their networks (medians=7.0; see
shows the composition of networks by gender. Similar Table 4). There was slightly more variation in percep-
network compositions were identified for both males tions of need, as median scores ranged from 1.0 (no
and females, with the exception of females having need for material assistance) to 5.0 (great need for
more friends comprising the informal networks social support and physical assistance).
(median=7.0 forfemales versus 4.5 for males).
Shifting networks following SCI
Informal networks The majority of individuals felt that their social net-
ParticipantsareencouragedintheASSIStoidentifyany works decreased since their SCI, three individuals
formal and informal members that fit within the six (21.4%) reported networks were moderately to
Table3 Identifiedinformalandformalnetworksbycomposition,family,friends,andhealthcareproviders(n=14)
Mediannumberofindividuals
Gender Family Friends HealthCareProviders Overall
Maleparticipants(n=6) 4.5 4.5 6.5 16.0
Femaleparticipants(n=8) 4.5 7.0 6.0 17.0
Overall 4.5 5.5 6.0 16.5
335 TheJournalofSpinalCordMedicine 2012 VOL.35 NO.5
Guilcheretal. Socialnetworksandsecondaryhealthconditions
Table4 Informalnetworkcomposition,satisfaction,andneed,basedonthesixASSISdomains
Available* Used* Satisfaction† Need‡
Intimate 2.5 1.0 7.0 3.0
Material 2.5 0.0 7.0§ 1.0
Advice 3.0 1.5 7.0 2.0
Positivefeedback 3.5 2.0 7.0 1.4
Physicalassistance 4.0 2.5 7.0 5.0
Socialsupport 6.5 5.5 7.0 5.0
Negativefeedback 0.0 0.0
*Medianvaluesarereportedduetosmallnumbers.
†Ordinalscale,1=verydissatisfiedto7=verysatisfied.
‡Ordinalscale,1=noneedto5=verygreatneed.
§Onlyonepersonreportedusingmaterialassistance.
significantlydecreased,andfourindividuals(28.6%)felt often assisted individuals in clinical decision making
that the networks slightly decreased. Four individuals of and self-management of SHCs.
(28.6%) stated that their networks did not substantially
They’retheones[wifeandson]thatsortofseeme
change.
regularlyand a lot of times I’ll just sort of go is it
meorisitreallyaproblem…Soifthere’severany-
Thematic results: informal social network roles thing that’s sort of a concern or bothering me, I
Numerous roles of informal networks were identified always sort of go to her [wife] first just because I
related to SHCs (see Fig. 2). know if I’m at the point where I’m squawking
about something, there’s something wrong.
(Interview Male 011)
Advice/validating concerns
Participantsdescribedhowinformalnetworksservedas
resources for advice related to SHCs, particularly with Knowledge brokers
respect tovalidating concerns. Participants often spoke Participants described their informal networks as
of uncertainty regarding the severity of a SHC and playing anintegralrolein theacquisition ofknowledge
whether or not formal medical assessment/treatment related to prevention of and/or management of SHCs.
would be warranted. In particular, informal networks Informalnetworksassistedindividualswithresearching
and acquiring clinical information, seeking appropriate
health services, as well as facilitating knowledge
exchange with various health care providers.
Furthermore,participantsdescribedhowtheirinformal
networks acted as key players in facilitating linkagesto
health care professionals with appropriate expertise in
managing SHCs.
Itwasjustbyluckmywifeknewanursethrougha
friend of ours who was a bed sore nurse that tra-
velled the world. She said “let me take a look at
the wound.” She took a look at the wound. She
offered this new product… and it cured me in 6
weeks. The doctor didn’t even know about this
and he wanted to put me in the hospital for a
month after the operation. (Interview Male 013)
Inparticular,theCPA-Ontario division wasmentioned
byseveralparticipantsasbeingakeylifelineforknowl-
edge brokerage. For example, participants described
how the CPA-Ontario provided individuals with a
wide range of important information both directly and
Figure2 Thematicresults indirectly related to SHCs, such as self-management,
TheJournalofSpinalCordMedicine 2012 VOL.35 NO.5 336
Guilcheretal. Socialnetworksandsecondaryhealthconditions
communityre-integration(workandvolunteeropportu- I don’t reuse catheters. We [wife and participant]
nities, and social opportunities), housing and personal madeaconscientiousdecisionwhenthishappened
support, community health resources, and funding nottoreusecatheters.Wehavetheadditionalcost.
support (assistivedevicesandequipment,anddisability Catheters are about $1 a pop… and I go through
support). about 4 or 5 a day. It is a big cost and it’s not
covered by insurance. But we said we will wear
LikeIsaid,CPA,ifithadn’tbeenfortheregional
that cost not to go through the risk of urinary
coordinator,Iwouldhavebeenleftslappinginthe
tract… But no issues that way but I think it’s
wind (Interview Female 008)
because we’re being very proactive and a lot of
people I knowaren’t in a position where they can
afford to sort of buy these things on a one use
Advocacy
basis. (Interview Male 011)
Participants discussed how informal networks played a
strong advocacy role, especially with respect to SHC
management and ensuring that they received timely
Preventing SHCs
and appropriate care. Family members and friends
Participants were asked about their experiences with
often accompanied participants to medical appoint-
prevention and/or management of SHCs. With respect
ments to assist with knowledge exchange and advocate
to facilitating prevention, participants described how
if needed. Participants commonly reported a feeling
informal networks assisted with important prevention
that the medical community dismissed concerns
behaviorsuchasskinchecksforpressuresores,swelling,
related to SHCs and appreciated the advocacy role
bruises, etc.
that informal networks played.
Iwassittinginalivingroom one dayandIhadn’t
I had an encounter with an orthopod who totally
really noticed any difference in the swelling of my
dismissed… I had a low energy fracture of the
feet. But my boyfriend did. He’s like “I don’t like
left tibia several years ago. I rolled over in bed
the way your feet are looking, they’re really
and broke it and the first ortho that I saw he says
swollen for you.” I looked down and it’s like oh
“there’s no break there.” Meanwhile my leg is
yeah, I guess they are… So they can sometimes
twice the size that it should be and bruised and
pick up things that you don’t and I think that’s
hot and everything else. My sister actually
extremely valuable… You get those that you trust
pointed it out on the x-ray to him. (Interview
tokind of do the areasthat youcan’t seeand they
Female 007)
get to a point where they might see something
that you’re not aware of. (Interview Female 007)
Assisting with finances
Inaddition,informalnetworksalsoassistedindividuals
Managing SHCs
in filling out lengthy documentation for equipment
Participants indicated that informal networks provided
funding, such as financial support for pressure relief
significantassistancewithmanagingSHCs.Inaddition,
cushions, wheel chairs, and home and vehicle modifi-
informal networks provide assistance in facilitating
cations. The assistance with these applications was
interaction with health care providers such as setting
noted to be critically important, as access to assistive
up medical appointments, transportation to and from
devices such as pressure relief cushions was essential in
medical appointments, as well as physical assistance in
minimizing the occurrence of pressure sores.
physically negotiating often poorly accessible medical
Participants described that the applications for funding
offices/examinationtables,aspartoftheirroleinmana-
support were time consuming and complicated, and
ging SHCs.
informalnetworksprovidedsubstantialsupportinnego-
tiating these funding processes. Especiallyformebecausemybiggesthandicap…I
Another important aspect to financial assistance is can’t even push my hands to click a button or
the personal financial contribution that informal net- Bluetoothoranything.She[wife]hastodoevery-
works provided. Many individuals described the finan- thing on the phone, answer it, deal with all the
cial “sacrifice” that their informal networks made, VHA [home health care] and CCAC
particularly family members, in order to minimize the [Community Care Access Centre, home care] and
occurrence of SHCs. everything because it’s useless to hand it to me
337 TheJournalofSpinalCordMedicine 2012 VOL.35 NO.5
Guilcheretal. Socialnetworksandsecondaryhealthconditions
because she’s going to do all the follow up. you and yet will allow you to be vulnerable. They
(Interview Male 013) just take what comes with the disability as it
comes… they are a secondary team because
Informal networks provided substantial personal care
they’re the onesthat are doing the bowel cleanup,
with daily secondary complication management such
the catheters in the middle of the night, the dres-
as bladderand bowel care.
sing changes, skin checks. You see them every
… bowel regularity… My body works fine but it day whereas your healthcare practitioner you’re
doesn’t work on a regular enough cycle…I lucky if you see once every 3 months, something
always have to have somebody with me, either like that. (Interview Female 007)
it’s to pull my pants down or to help maneuver
Participants described how the informal networks, in
the commode chair because it’s a little awkward.
particular family members, always were on-call, avail-
So I fundamentally have to work my bowel sche-
able, and adaptable in dealing with issues related to
dule around when I have somebody in the house
SHCs. These informal networks were described as
to help me. So what I do is I now take basically
members of a “secondary team”, critical in the preven-
it’s a suppository every two days and I have
tion and management of SHCs. Finally, individuals
enough sensation I can tell if my bowels are
described informal networks changing following their
getting full. So I can tell if there’s pressure… and
injury,usuallybecomingsmallerbutstrongernetworks.
literally I almost run my life around the bowel
schedule…the two people that have to handle Ifoundoutwhomyfriendswereandwhoweren’t
this with me is either my wife or myson. So I lit- my friends or were just acquaintances. I think my
erally have to sort of okay what’s your schedule, network has become a closer network to me, a
where are you going, are you going to be in a smaller group of people but closer. (Interview
meeting,justsoIcanmakesureokay…itliterally, Female 008)
it’s day one or it’s day two. If it’s day two, you
come home. Now my wife fortunately works lit- Discussion
erally 10 minutes down the road from the house, Size of caregiving networks
so if all of a sudden I’m going I’ve got to go In this descriptive mixed-methods study, we examined
now, I often can just pick up the phone and say the structure, role, and quality of networks of care for
please come home now if you can. And she persons with an SCI using the NEM. We identified
does… (Interview Male 011) that individuals had an overall median informal and
formal network size of 16.5 persons (range 5–28),
which included health care professionals, community
Quality of informal network relationships
organizations,friends,andfamilymembers.Incompari-
Participants discussed the importance of their informal
son with the general population, we identified that the
networks and the value that they placed on these
size ofoverall networks forpersonswith SCI is slightly
relationships. Trust and flexibility were important
smaller, as networks in the general population range
characteristics of the relationships with informal net- from 20 to 30 persons.54–56 However, these results are
works. With respect to trust, individuals described how
similar to other studies that have used the ASSIS as a
informal networks provided support, both emotional
measure of networks for other vulnerable populations
and physical, in a safe environment.
with disabilities. Previous studies have identified net-
I think that you know a secondary team like the works to be 11.5 persons for both the mental health
family and friends are just as important if not population55 and multiple sclerosis population.57 In
more so in some aspects of primary health care the rheumatoid arthritis population, using the Social
because the doctors, they see you briefly, they Network Delineation Questionnaire, Fyrand et al.58
make the diagnosis. But then it’s the secondary identified a total network size of 15.8 persons. In the
team if you will that do the day to day things… general population, size of networks is important, as
You’re calling them at 3 am going help because larger a social network, the more likely information
you can’t get cleaned up or things like that and I will be passed on and new contacts made.59,60
think the secondary team is definitely not given UsingtheASSIS,weidentifiedthemediannumberof
enough credit… you’ve got the system and the available informal networks to be 11 persons (range
team… you know, these are people that you trust 3–19). These findings are similar to a previous study
that will go to bat for you, that will speak up for that identified the available social support networks
TheJournalofSpinalCordMedicine 2012 VOL.35 NO.5 338
Guilcheretal. Socialnetworksandsecondaryhealthconditions
for persons with SCI 2 years following injury to be participants greatly valued a closer and stronger level
approximately 8.3 persons.61 It is worth noting that of trust with their informal networks given the vulner-
the Social Support Questionnaire62 was used to ability of care provision potentially required.
measure social networks and this instrument has a Participantsdescribedtheirinformalnetworksasa“sec-
ceiling of nine persons that can be identified. In our ondary team”, that is, a critical and essential force in
present study we did not have a ceiling limit, as the dealing directly and indirectly with SHCs. The roles to
ASSIS has no restriction on the number of reported which the secondary team members engaged in
networks. dealing with SHCs were identified as the following: (1)
Specificallywithinintimaterelations, participantshad advice/validating concerns; (2) knowledge brokers; (3)
amedianof2.5networkmembers,whichissmallerthan advocacy; (4) assisting with finances; (5) preventing
the general population, as recently, Wellman et al.63 SHCs; and (6) managing SHCs. These results support
identified in the “Connected Lives Study”, persons thestrengthofcohesion,68,69asstrongtiesareimportant
living in Toronto felt “very close” to 4.1 network whenanindividualisinamorevulnerablepositionand
members. Social support and physical assistance net- thereisaneedfortrustandcertainty.68Therolesident-
works were larger in size compared with the other four ified of informal networks for persons with SCI are
domains, and participants rated these two domains in similar to informal care roles identified for persons
particular to be of “very great need”. Participants also with other chronic conditions.70–74 Recently, Essue
reported using these social support and physical assist- and colleagues identified key roles in the self-manage-
ance networksmore thanthe otherdomains. mentpartnershipforpersonswithcomplexchroniccon-
ditions (i.e. chronic heart failure, chronic obstructive
Role and quality of relationships pulmonary disease, and diabetes) to include home-
In addition to network size, we examined the role of helper, lifestyle coach, advocate, technical care
networkmembersaswellasthequalityoftheserelation- manager, and health information interpreter.
ships. This present study highlighted the importance of This research suggests informal networks serve as
understanding the qualitative nature of social networks essential key players in filling in the gaps that exist
and the roles which individuals play within the context within the formal health care system. In particular, the
of SHCs. While the size of the informal networks may CPA-Ontariowasidentifiedasanessentialorganization
be smaller than that of the general population, the tobridgethisgap,servingasakeylifelineforknowledge
close ties with informal networks described by partici- brokerageandadvocacy.TheCPA-Ontarioisanot-for-
pants in the qualitative interviews was evident. profitorganizationthatprovidesservicesintheareasof
Specifically, bonding cohesive social capital, character- peer support, regional services coordinators, member-
ized by intimate relationships in which social and ship, employment services, advocacy, information ser-
psychological support are provided to help with day to vices, and attendant services.75
day care needs64 was prominent among participants Indeed,thegapsandbarrierstohealthservicedelivery
rather than bridging social capital. Bonding social forthosewithcomplexchronicdisabilitieshavebeenpre-
capital is typically provided by relationships with viously documented.18 Recently, Meade et al.76 specifi-
family members as often these ties involve a significant cally highlighted gaps in formal provider knowledge,
amount of time with strong intimacy and trust.65 Key provider–patient collaboration, qualityof provider–pati-
playerswithinthesocialsupportandphysicalassistance ent communication, and discrimination for persons
networks were often family members, particularly with SCI. Consistent with these findings, the present
spouses and/or significant partners of participants. study identified that informal networks serve as central
The latter type of social capital, bridging, is based on advocates, knowledge brokers, and validate secondary
weaker ties which are better suited to providing instru- complicationconcernsfor personswithSCI.
mental resources (e.g. access to community services This research highlighted that these small cohesive
and knowledge diffusion) rather than emotional or networks of close ties are indispensable for persons
physical support.59 withaSCI.Therelianceonthesesmallcare-givingnet-
Previousresearchhasidentifiedtheutilityofbridging works highlights the vulnerability and fragility of the
capitalwiththe“strengthofweakties”59and“structural informal networks. Persons with SCI might benefit
holes”,66thatis,byincreasingthenumberofnon-redun- from a more expansive network rich with weak ties to
dant connections, individuals in theory have greater access novel information and diverse resources (e.g.
opportunity to access resources.24,67 However, in the how to prevent SHCs, new technologies, how to apply
present research, our qualitative data suggests that for equipment funding). Developing and maintaining
339 TheJournalofSpinalCordMedicine 2012 VOL.35 NO.5