i
THE FIRST TIME DELIVERY OF THE FIRST LINK LEARNING SERIES USING SKYPE AND YOUTUBE
by
© E l izabe th McNaugh ton Wa l lack D isser ta t ion subm i t ted to the
Schoo l of Gradua te S tud ies
in par t ia l fu lf i l lmen t of the requ iremen ts for the deg ree of
Master of Sc ience in Med ic ine (Commun ity Hea lth)
D iv is ion o f Commun ity Hea lth & Human it ies , Facu lty of Med ic ine Memor ia l Un ivers i ty
May , 2016
S t . John’s, NL
i i Abstract
Introduct ion: Th is case s tudy documen ted the exper iences of informa l and serv ice prov iders who par t ic ipa ted in the f irs t t ime de l ivery of the F irs t L ink Learn ing S er ies from May –Augus t 2013 in Newfound land and Labrador . The a im of th is s tudy was to unders tand how informa l careg ivers of peop le w i th demen t ia exper ience th is Interne t med ia ted hea l th resource, and how Skype and YouTube can be used as too ls for the A lzhe imer Soc ie ty of Newfound land and Labrador to effec t ive ly de l iver the F irs t L ink Learn ing Ser ies . Methods: S ources of da ta inc luded key informan t in terv iews (n=3) , pre- s tudy and pos t-s tudy in terv iews w i th informa l demen t ia careg ivers (n=2), ins t i tu t ion a l documen ta t ion , f ie ld no tes , and YouTube ana ly t ics . Framework Ana lys is was used to make mean ing of the qua l i ta t ive da ta , and descr ip t ive s ta t is t ics were used to repor t on quan t i ta t ive ou tcomes . F ind ings: Be tween 3% and 17% of reg is tered F irs t L ink c l ien t s a t tended the learn ing ser ies sess ions , however on ly two careg ivers par t ic ipa ted us ing Skype or YouTube . Framework Ana lys is revea led three shared themes : access ,
connec t ion and pr ivacy . D iscuss ion: The themes he lped to beg in bu i ld ing theory abou t barr iers and fac i l i ta tors to In terne t med ia ted hea l th resources for informa l demen t ia
careg ivers . Exper iences of serv ice prov iders us ing the In terne t to suppor t c l ien ts served to beg in bu i ld ing a case for the appropr ia teness of these med ia. A mod if ied vers ion of
Dansky e t a l .’s (2006) theore t ica l framework for eva lua t ing E- Hea l th research tha t
s i tua tes the person /user in the mode l , he lped gu ide d iscuss ion and propose fu ture
d irec t ions for the s tudy of In terne t based hea l th resources for informa l demen t ia
careg ivers .
i i i
Acknow ledgements
I wou ld l ike to beg in by thank ing the Newfound land and Labrador Cen tre for App l ied Hea l th Research, as we l l as the Off ice for Ag ing and Sen iors, the Prov inc ia l Governmen t of Newfound land and Labrador , and Memor ia l Un ivers i ty who prov ided generous fund ing for th is pro jec t through the Hea l th Ag ing Research Program . Nex t , I wou ld l ike to acknow ledge the suppor t of my superv isory comm i t tee : Drs . D iana Gus tafson , Ga i l W ideman and Kenne th Rockwood . Your gu idance through th is process has been inva luab le . I wou ld a lso l ike to thank Dr . M iche l le P loughman who has a l lowed me to take t ime away from work in order to f in ish my mas ter’s, and Dr . Roger Bu t ler for tak ing research us ing techno logy to suppor t peop le w i th demen t ia to the nex t leve l in Newfound land and Labrador .
I wou ld a lso l ike to thank my fam i ly for the ir suppor t throughou t th is process : my
paren ts , M ichae l and Jane t whose love and gu idance means the wor ld to me ; and my
par tner N ick Bruce for h is pa t ience through th is process . F ina l ly , I wou ld l ike to ded ica te
th is thes is to my g randparen ts Ar thur and Isabe l le McNaugh ton who faced A lzhe imer’s
d isease w i th bravery and d ign i ty and who insp ired me to wan t to make l ife be t ter for
o thers who are l iv ing w i th demen t ia .
iv Contents
Abstract . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . II Acknow ledgements . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . III L ist of tab les . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . VII L ist of f igures . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . VIIVIII L ist of abbrev iat ions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . v i i i List of append ices . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . IX
Introduct ion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1
Onto logy . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2
Prob lem Statement . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5
Research Quest ions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5
Rat iona le , Goa l and Purpose . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5
Understand ing Dement ia and Dement ia Careg ivers . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6
Ag ing and Dement ia in NL . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 9
Resources for Peop le w ith Dement ia and The ir Careg ivers in NL . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 11
The ASNL and the F irst L ink Program . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 14
Te lemed ic ine and E-Hea lth in the NL Context . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 17
Study S ign if icance . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 24
Summary . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 25
L itterature Rev iew . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 26
Understand ing the Needs of Dement ia Careg ivers . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 26
Internet-based Hea lth Resources for Dement ia Careg ivers . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 31
Skype and YouTube . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 35
How Community and Nonprof it Organ izat ions are us ing the Internet . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 37
Summary . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 40
v
Methodo logy and Methods . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 42
Theoret ica l Frameworks and Case Study Research . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 44
A Framework for Understand ing E-Hea lth Research . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 45
App ly ing Dansky et a l .’s Framework to the Research Des ign . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 47
Des ign . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 47
Env ironmen t . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 58
Log is t ics . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 62
Techno logy . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 65
Summary . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 67
F ind ings . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 69
F irst L ink Learn ing Ser ies . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 69
Descr ipt ion of On l ine Careg iver Part ic ipants . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 70
Descr ipt ion of Serv ice Prov iders . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 72
YouTube Ana lyt ics . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 72
F ie ld Notes . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 73
Themes. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 73
Access . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 73
Connec t ion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 82
Pr ivacy . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 85
Conc lus ion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 88
D iscuss ion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 91
How do informa l careg ivers of peop le w ith dement ia exper ience the F irst L ink Learn ing Ser ies on l ine us ing Skype and YouTube? . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 92
Access barr iers . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 93
Access as a fac i l i ta tor . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 95
Pr ivacy barr iers . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 97
Pr ivacy as a fac i l i ta tor . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 98
Connec t ion as a fac i l i ta tor . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 99
How can Skype and YouTube be used as too ls for the ASNL to effect ive ly de l iver the F irst L ink Learn ing Ser ies? . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 100
Future Cons iderat ions for Understand ing the De l ivery of Internet Med iated Hea l th Resources for Dement ia Careg ivers – Mod ify ing Dansky et a l .’s (2006) Framework . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 103
L im itat ions and Future Research Recommendat ions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 110
Conc lus ion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 114
v i
References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 116
Append ix A . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 135
Append ix B . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 157
Append ix C . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 163
Append ix D . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 171
Append ix E . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 173
Append ix F . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 174
Append ix G . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 194
Append ix H . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 195
v i i
L ist of Tab les
1 . F irs t L ink Learn ing Ser ies Top ics ……… .15 2 . A t tendance of the F irs t L ink Learn ing Ser ies May–Augus t 2013…… .…………70 3 . On l ine demen t ia careg iver par t ic ipan t charac ter is t ics……… . . .71 4 . Serv ice prov ider charac ter is t ics……… .72 5 . Top 10 YouTube V iews by Coun try……… .… .78 6 . Wa tch T ime for Memory Loss and the Bra in Par t 1 , February 1–March 1 ,
2014………81
7 . P lacemen t of themes in to mod if ied Dansky e t a l . (2006) Framework ……… . . .105
v i i i L ist of F igures
F igure
1 . Map of Newfound land and Labrador’s Te lemed ic ine Cen ters……… . .23 2 . Embedded Case S tudy Des ign (Y in , 2003)……… . . .………48 3 . Mod if ied Embedded Case S tudy Des ign……… . . .48 4 . Demen t ia Careg ivers’ Exper iences of In terne t Med ia ted Hea l th Resources…. . . . .93 5 . A Mod if ied vers ion of Dansky e t a l .’s (2006) Framework for Unders tand ing E-
Hea l th Research……… . .………… .105
ix L ist of Abbrev iat ions
ASNL – A lzhe imer Soc ie ty of Newfound land and Labrador NL – Newfound land and Labrador
TAM – Techno logy Accep tance Mode l
x L ist of Append ices
Append ix
A . Skype fac i l i ta tor tra in ing manua l……… .……134
B . Goa l A t ta inmen t Sca l ing In terv iew Gu ide……… . . .156
C . Summary of Par t ic ipant Goa ls……… .…162
D . Key informan t in terv iew Gu ide……… . . .170
E . Fo l low Up In terv iew Gu ide……… .172
F . F irs t L ink Learn ing Ser ies Repor t………173
G . F irs t L ink Co-Coord ina tor Con tac t Scr ip t……… . . .194
H . A Modern Approach to Conf ron t ing A lzhe imer’s disease ……… . 195
1 Introduct ion
The pr imary focus of th is case s tudy is to descr ibe the exper iences of demen t ia careg ivers who accessed In terne t-based hea l th resources prov ided by the A lzhe imer Soc ie ty of Newfound land and Labrador (ASNL ). Us ing a na tura l is t parad igm , I have exp lored th is phenomenon w i th in i ts con tex t , us ing a var ie ty of da ta sources . Th is approach ensures tha t issues are no t exp lored through one lens , bu t ins tead tha t mu l t ip le aspec ts of a phenomenon can be unders tood through a mu l t ip l ic i ty of lenses . In carry ing ou t th is research , my goa l was to focus on peop le’s ind iv idua l exper iences as demen t ia careg ivers , serv ice prov iders , and techno logy users . By do ing th is I have iden t if ied a work ing hypo thes is for how In terne t-based hea l th resources can address cen tra l issues surround ing three overarch ing themes presen t in my da ta: access , pr ivacy and connec t ion .
I refer to the term ‘demen t ia careg iver’ in my research and def ine i t as an informa l careg iver , who cou ld be a spouse , ch i ld , fr iend or o ther re la t ive of the person w i th
demen t ia who is prov id ing care . Th is def in i t ion exc ludes pa id or profess iona l careg ivers who are no t fr iends or fam i ly members . The term ‘serv ice prov ider’ in th is research spec if ica l ly refers to peop le who work for non-prof i t organ iza t ions tha t prov ide informa t ion and /o r suppor t to ind iv idua ls l iv ing w i th demen t ia and the ir fam i l ies . In terne t-based hea l th resources are a type of E-Hea l th and are def ined as hea l th
informa t ion on webs i tes or ac t iv i t ies v ia commun ica t ion techno log ies. I have spec if ica l ly
focused on Skype and YouTube as veh ic les or ways to de l iver hea l th resources on l ine .
These terms w i l l be d iscussed in g rea ter de ta i l la ter in th is chap ter and a lso in C hap ter 2.
2 In th is chap ter I w i l l pos i t ion myse lf w i th in the research . Subsequen t ly , I w il l prov ide a descr ip t ion of the research prob lem , iden t ify my research ques t ions and d iscuss my ra t iona le, goa l s and purpose of the research pro jec t .
I w i l l then ou t l ine the con tex t of th is case s tudy , focus ing on issues in
Newfound land and Labrador ( NL) . These issues inc lude: ag ing and demen t ia , resources for peop le w i th demen t ia , the ASNL and the F irs t L ink Prog ram , and te lemed ic ine and E- Hea l th in the NL con tex t . F ina l ly, af ter d iscuss ing these con tex tua l e lemen ts , I w i l l conso l ida te these areas in order to i l lus tra te the gaps my research has iden t if ied and addressed and demons tra te the s ign if icance of th is s tudy .
Onto logy
Cr i t ics of trad i t iona l sc ien t if ic cons truc t ions of know ledge have descr ibed
l im i ta t ions to me thods of inqu iry tha t exam ine rea l i ty as a s ing le, knowab le and def ined ob jec t ( C lark , 1998; Guba & L inco ln , 1994; Ho l ton , 1993) . Wh i le there are many benef i ts to know ledge creat ion tha t fo l low an emp ir ica l approach , trad i t iona l sc ien t if ic parad igms canno t a lways be app l ied to rea l-wor ld se t t ings in wh ich researchers have l im i ted
inf luence or ab i l i ty to man ipu la te cond i t ions and behav iours. Na tura l is t ic inqu iry ,
however , prov ides an a l terna te parad igm for researchers who w ish to s tudy dynam ic
phenomena in the f ie ld . W i l lems and Raush (1969) descr ibed two d imens ions tha t he lp to
def ine the na tura l is t ic approach to research: the degree of inf luence on the cond i t ions and
behav iours s tud ied , and tha t effor ts are made to ensure the researcher does no t impose an
a pr ior i se t of ou tcomes (W i l lems & Raush , 1969, p . 46) . Tak ing th is in to cons idera t ion ,
3 W i l lems and Rush (1969 ) he lp to d irec t wha t the na tura l is t ic researcher does , or the se t of ac t iv i t ies tha t are under taken dur ing the research process .
L inco ln and Guba (1985) argue tha t na tura l is t ic inqu iry can be cons idered ana logous to o ther terms inc lud ing pos t-pos i t iv ism, phenomeno logy and the case s tudy . Cons truc t iv ism is a more con temporary term of ten used. Wh i le t hese terms have sub t le d ifferences and those tha t use them take d ifferen t v iews of wha t they imp ly , L inco ln and Guba (1985) sugges t tha t na tura l ism is an overarch ing term under wh ich the o ther aforemen t ioned terms fa l l. To he lp fur ther deve lop our unders ta nd ing of na tura l is t ic inqu iry , L inco ln and Guba (1985) descr ibe the assump t ions tha t under l ie th is me thod of inqu iry . I have adop ted these assump t ions to gu ide my research process . The fo l low ing are f ive propos i t ions of the na tura l is t parad igm :
• “Rea l i t ies are mu l t ip le , cons truc ted and ho l is t ic ,
• Knower and known are in terac t ive , inseparab le ,
• On ly t ime and con tex t bound work ing hypo theses are poss ib le ,
• A l l en t i t ies are in a s ta te of s imu l taneous shap ing , so tha t i t is imposs ib le to d is t ingu ish cau se from effec ts ,
• Inqu iry is va lue bound” (L inco ln & Guba , 1985 , p . 37)
These f ive assump t ions shape s tudy des ign , the types of ques t ions asked by the
researcher , as we l l as da ta ana lys is and in terpre ta t ion. Spec if ic me thodo log ica l issues w i l l
be addressed in the fo l low ing chap ter . As a s tar t ing po in t , however , i t is impor tan t for me
to or ien t myse lf w i th in the research in order to s i tua te myse lf to the prob lem s ta temen t ,
4 research ques t ions and ra t iona le, goa l s , and purpose of the s tudy , wh ich fo l low th is sec t ion.
The sub jec t of suppor t ing demen t ia careg ivers is very c lose to me . Bo th of my ma terna l g randparen ts had demen t ia before they d ied and I spent t ime car ing for my g randfa ther over the course of my mas ter’s prog ram . My mo ther’s s ide of the fam i ly l ives in Toron to , On tar io ( the larges t c i ty in the coun try ) . A t t imes over the course of my g randparen ts’ journey w i th A lzhe imer’s, our fam i ly found i tse lf search ing for resources and suppor t , work ing hard to unders tand wha t was happen ing to our cher ished fami ly members .
Ear ly in my g randmo ther’s journey w i th A lzhe imer’s d isease , I rea l ized how for tuna te we were for her to be l iv ing in a large c i ty l ike Toron to , where there are
oppor tun i t ies for peop le w i th demen t ia inc lud ing adequa te numbers of home care workers and demen t ia ta i lored day programs . I was born and ra ised in S t . John’s , NL and d ur ing the t ime I spen t car ing for my g randparen ts I became very in teres ted in unders tand ing the needs of peop le w i th demen t ia and the fam i ly members who care for them in my home prov ince . Before beg inn ing my mas ter’s prog ram, I worked a t the A lzhe imer Soc ie ty of Newfound land and Labrador (ASNL ) , the organ iza t ion I par tnered w i th for th is pro jec t .
I am in a un ique pos i t ion in re la t ion to my research top ic and my pass ion for
unders tand ing the exper iences of A lzhe imer’s careg ivers because of these two very
impor tan t aspec ts of my l ife h is tory , Th is has, of course , shaped the ep is temo log ica l
underp inn ings of my research . Throughou t the research process I was carefu l to cons ider
my poss ib le b iases as someone who has bo th worked for the organ iza t ion I par tnered
w i th , and as someone who l ived as a demen t ia careg iver. In my ro le as the researcher I
5 have a t temp ted no t to make any assump t ions abou t o ther peop le’s exper iences based on my own sub jec t ive though ts and fee l ings . Hav ing sa id tha t , I d id use my persona l connec t ions to the sub jec t ma t ter to he lp bu i ld trus t and rappor t w i th the peop le I in terv iewed . Th is un ique perspec t ive a lso he lped to shape my unders tand ing of the prob lem I hope to beg in to address w i th th is research.
Prob lem Statement
There are curren t ly l im i ted ways to address the informa t iona l needs of careg ivers of peop le w i th demen t ia in NL. There is a gap in the l i tera ture around unders tand ing ways to use techno logy in order to suppor t careg ivers of peop le w i th demen t ia in th is prov ince . There is a lso a sense of urgency requ ir ing the peop le of NL to address th is prob lem , wh ich re la tes to the ag ing demog raph ics in our prov ince and our un ique geog raph ica l cha l lenges , and inc ludes peop le l iv ing in rura l and remo te commun i t ies who w ish to age in p lace .
Research Quest ions
1 . How do informa l careg ivers of peop le w i th demen t ia exper ience the F irs t L ink Learn ing Ser ies on l ine us ing Skype and YouTube?
2 . How can Skype and YouTube be used as too ls for the ASNL to effec t ive ly de l iver the F irs t L ink Learn ing Ser ies?
Rat iona le , Goa l and Purpose
Dur ing the fa l l of 2011 when I began my mas ter’s program , the ASNL was
search ing for low cos t op t ions to de l iver educa t ion and suppor t to careg ivers of peop le
6 w i th demen t ia throughou t the prov ince . I formed a par tnersh ip w i th the ASNL in order to prov ide on l ine op t ions for the learn ing ser ies, wh ich I w i l l d iscuss br ief ly la ter in th is chap ter and a lso in the me thods sec t ion . Th is par tnersh ip formed the bas is for my research s tudy . We mu tua l ly agreed tha t us ing Skype and YouTube had the po ten t ia l to crea te sus ta inab le so lu t ions for de l iver ing the learn ing ser ies on l ine . The purpose of my invo lvemen t was to documen t the exper iences of F irs t L ink c l ien ts who used S kype and YouTube to access the learn ing ser ies on l ine .
Understand ing Dement ia and Dement ia Careg ivers
Demen t ia is a syndrome tha t is d iagnosed when cogn i t ive def ic i ts are suff ic ien t enough to in terfere w i th soc ia l or occupa t iona l func t ion ing (Rockwood e t a l . , 2014) . These cogn i t ive def ic i ts genera l ly affec t th ink ing , remember ing and reason ing . Demen t ia is no t a spec if ic d isease . Many d iseases can cause demen t ia . Common demen t ing
d isorders inc lude A lzhe imer’s d isease (accoun t ing for 60% of cases in Canada) ; Vascu lar
demen t ia ; Fron to-tempora l demen t ia ; and Demen t ia w i th Lewy bod ies (Sme tan in e t a l . ,
2009) . An ind iv idua l can l ive w i th demen t ia for be tween 2–18 years af ter d iagnos is , w i th
an average l ife expec tancy of 7 years (Mark , 2015) . Carone , Asghar ian and Jewe l l (2014)
es t ima te tha t more than two ou t of every f ive Canad ians reach ing the age of 65 deve lops
demen t ia before dea th, wh ich means tha t the l ife t ime r isk of demen t ia among e lder ly
Canad ians is 42 .6%. Near ly 80% of a l l cases of demen t ia in Canada occur be tween the
ages of 75 and 95 , w i th 9 .6% of the Canad ian popu la t ion deve lop ing demen t ia by age 80
and 28 .7% by age 90 (Carone e t a l . , 2014) .
7 Demen t ia is prog ress ive, wh ich means the symp toms w i l l g radua l ly ge t worse over t ime. Demen t ia is genera l ly d iv ided in to three s tages : m i ld, modera te and severe . They can a lso some t imes be ca l led ear ly , m idd le, and la te s tages ( "L iv ing w i th
Demen t ia ," 2015; Lopez e t a l . , 2003) . Common symp toms in the ear ly s tages of demen t ia inc lude forge tfu lness , commun ica t ion d iff icu l t ies , and changes in mood and behav iour (Cere je ira , Lagar to , & Mukae tova-Lad inska , 2012; "L iv ing w i th Demen t ia ," 2015; Lopez e t a l . , 2003). Peop le in th is s tage can ma in ta in many of the ir func t iona l ab i l i t ies wi th m in imum ass is tance . They may have ins igh t in to the ir chang ing ab i l i t ies , and can he lp to p lan and d irec t the ir curren t and fu ture care . In the m idd le s tages of the d isease memory and o ther cogn i t ive ab i l i t ies w i l l con t inue to dec l ine a l though many people a t th is s tage s t i l l have some awareness of the ir cond i t ion (Cere je ira e t a l . , 2012; "L iv ing w i th
Demen t ia ," 2015; Lopez e t a l . , 2003). Ass is tance w i th da i ly tasks such as: shopp ing , housekeep ing , dress ing , ba th ing and to i le t ing can become necessary as th is s tage
progresses . In the la te s tage peop le even tua l ly become unab le to commun ica te verba l ly or look af ter themse lves and care is requ ired twen ty four hours a day ( Cere je ira e t a l . , 2012;
"L iv ing w i th Demen t ia ," 2015; Lopez e t a l . , 2003) .
Wh i le there are genera l s tages tha t peop le w i th demen t ia progress through ,
research sugges ts tha t peop le exper ience a w ide range of symp toms and many common
symp toms can occur a t d ifferent s tages of the d isease (Rockwood , R ichard , Le ibman ,
Mucha , & M i tn i tsk i , 2013) . The ind iv idua l d ifferences in peop le w i th demen t ia mean tha t
there can a lso be a lo t of uncer ta in ty abou t wha t the fu ture w i l l ho ld . B ecause of the
progress ive na ture of the d isease peop le w i th demen t ia even tua l ly become re l ian t on
careg ivers to he lp them in the ir da i ly l ives .
8 In 2012 , 480 ,000 Canad ians repor ted tha t they were prov id ing informa l care for someone l iv ing w i th demen t ia (S inha , 2013) . Demen t ia was the 5 th mos t common prob lem requ ir ing he lp from careg ivers in Canada beh ind ag ing , cancer , card iovascu lar d isease and men ta l i l lness . Fam i ly careg iv ing a lso comes a t a persona l and f inanc ia l cos t to fam i l ies . In 2011 , fam i ly careg ivers spen t in excess of 444 m i l l ion unpa id hours look ing af ter someone w i th cogn i t ive impa irmen t , inc lud ing those w i th demen t ia ( S inha , 2013) . These hours represen t persona l and f inanc ia l sacr if ices made by careg ivers who may have o therw ise been work ing or car ing for the ir own young fam i l ies .
A demen t ia careg iver’s ma in ro le is to prov ide day -to -day care for the person w i th
demen t ia . Th is may inc lude suppor t w i th ac t iv i t ies of da i ly l iv ing , such as persona l care
or ambu la t ion ; ins trumen ta l ac t iv i t ies of da i ly l iv ing , such as shopp ing , bank ing or
prepar ing mea ls ; manag ing o ther aspec ts of care , such as safe ty concerns and h ir ing and
superv is ing profess iona l care serv ices ; and he lp ing the person to access med ica l care
through ac t iv i t ies such as prov id ing transpor ta t ion , and arrang ing appo in tmen ts ( Sme tan in
e t a l . , 2009). Peop le w i th demen t ia and the ir informa l careg ivers are some t imes referred
t o as a careg iv ing dyad (Morr ison , W in ter , & G i t l in , 2014) . The term ‘dyad’ refers to two
ind iv idua ls who are regarded as a pa ir . D emen t ia careg ivers are in tr ins ica l ly l inked to the
person they are car ing for because much of the ir day is cen tered on prov id ing care for the
ind iv idua l . Th is l ink is a lso accen tua ted because informa l careg ivers have a persona l
connec t ion to the person they care for and have h is tory toge ther as fam i ly or fr iends pr ior
to the onse t of demen t ia . Many in terven t ions for peop le w i th demen t ia a lso focus on
suppor t ing the careg iver , acknow ledg ing the in tr ins ic l ink be tween the hea l th and we l l-
be ing of bo th members of the dyad ( Boo ts , de Vug t , van Kn ippenberg , Kempen , &
9 Verhey , 2014) . For th is reason, when cons ider ing ways to suppor t peop le l iv ing w i th demen t ia , I sugges t tha t i t is equa l ly impor tan t to cons ider the needs of the demen t ia careg iver . In the nex t chap ter, I w i l l descr ibe the needs of demen t ia careg ivers in grea ter de ta i l , bu t for now I move to a d iscuss ion of how NL is impac ted by demen t ia and how th is re la tes to an ag ing popu la t ion .
Ag ing and Dement ia in NL
There are ex treme ly l im i ted s ta t is t ics descr ib ing the inc idence ra tes of demen t ia in th is prov ince . Accord ing to the ASNL , there are curren t ly approx ima te ly 7 ,680 peop le l iv ing w i th demen t ia in NL. Th is inc idence ra te is ex trapo la ted by app ly ing inc idence ra tes from work done by the Canad ian S tudy of Hea l th and Ag ing Work ing Group (2000) to popu la t ion s ta t is t ics in NL . The accuracy of th is es t ima te is no t we l l unders tood . In 1996 , a lega l in terpreta t ion of NL ’s advance d irec t ives leg is la t ion barred the use of proxy consen t for ind iv idua ls unab le to g ive fu l l , informed consen t for research (L indsay e t a l . , 2002) . Th is dec is ion caused NL to exc lude i tse lf from th is impor tan t founda t iona l s tudy on the inc idence of demen t ia in Canada, l im i t ing access to accura te and re l iab le s ta t is t ics on demen t ia in NL .
One of the g rea tes t r isk fac tors for demen t ia is age (Gardner , Va lcour , & Yaffe ,
2013) and NL has the fas tes t g row ing ag ing popu la t ion in Canada . Because of NL ’s
rap id ly ag ing popu la t ion , we can a lso expec t an increase in the number of peop le l iv ing
w i th demen t ia. In 2015 there were 91 ,059 adu l ts over the age of 65 in our prov ince
(Econom ic Research and Ana lys is , Depar tmen t of F inance , n .d .) . By 2026 there w i l l be
130 ,055 adu l ts over the age of 65 ( Econom ic Research and Ana lys is , Depar tmen t of
10 F inance , n .d .) . Th is represen ts a grow th ra te of 43% over 12 years . Some of the fas tes t g row ing ra tes of o lder adu l ts in NL are in rura l and remo te areas of the prov ince .
Hav ing l im i ted s ta t is t ics abou t peop le l iv ing w i th demen t ia in NL makes i t cha l leng ing to p lan and de l iver serv ices to these ind iv idua ls . Th is is curren t ly a ma jor barr ier to support ing ind iv idua ls w i th demen t ia in NL. From wha t we a lready know , t he number of commun i ty -dwe l l ing o lder adu l ts in th is prov ince , inc lud ing those w i th demen t ia , is expec ted to increase a t a grea ter ra te than tha t of the resources requ ired to prov ide serv ices to them in the commun i ty (Chappe l l , Borns te in , & Kean , 2014) . Careg ivers of peop le w i th demen t ia in th is prov ince w i l l requ ire increased suppor t and serv ices to he lp manage the d isease and he lp those w i th demen t ia l ive comfor tab ly in the commun i ty , and there w i l l be a need to f ind new and innova t ive ways to address th is issue .
NL’s geog raph ica l fea tures inf luence peop le’s perspec t ives and exper iences . NL
has a sparse popu la t ion spread ou t over a large landmass w i th many peop le l iv ing in
remo te and rura l areas w i th l im i ted access to amen i t ies or hea l th fac i l i t ies . In add i t ion , t he
phys ica l terra in of NL is rugged and is of ten charac ter ized by unpred ic tab le wea ther . I t is,
therefore , essen t ia l to unders tand these con tex tua l fac tors as they re la te to o lder adu l ts and
peop le w i th demen t ia in our prov ince . Commun i t ies in th is prov ince were or ig ina l ly
es tab l ished as f ish ing v i l lages tha t do t the coas t l ines . Many commun i t ies cou ld on ly be
accessed by boa t un t i l as recen t ly as the 1970s . Even when connec ted by roadways ,
peop le in many rura l and remo te commun i t ies throughou t the prov ince s t i l l have to trave l
long hours to access serv ices inc lud ing shopp ing , banks and hosp i ta ls . Th is becomes even
11 more comp lex because of the long w in ters , road cond i t ions and the h igh pr ice of fue l tha t can make dr iv ing long d is tances dangerous and expens ive .
Geography has caused peop le in NL to adap t in a number of ways . Some research sugges ts tha t h is tor ica l ly , peop le in NL have had a tendency to seg rega te themse lves geograph ica l ly by commun i t ies , or even w i th in a commun i ty i tse lf a long cu l tura l and re l ig ious l ines (Ph i lpo t t , 2002) . Se lf-suff ic iency is a lso a h igh ly va lued tra i t among Newfound landers and connec ts to the rura l cu l ture , where l ifes ty les were based on the pr imary indus tr ies of f ish ing and fores try (Ph i lpo t t , 2002) . The un iqueness of p lace and i ts inf luence on the peop le who l ive here is a lso impor tan t for unders tand ing the needs of demen t ia careg ivers in NL.
Resources for Peop le w ith Dement ia and The ir Careg ivers in NL
There are very l im i ted resources for peop le w i th demen t ia in NL, and the peop le
who care for them . The two ma in resource prov iders in NL are the prov inc ia l governmen t
and the non-prof i t sec tor . Resources prov ided by the prov inc ia l governmen t are offered
through the Depar tmen t of Hea l th and Commun i ty Serv ices . Of these serv ices , mos t focus
on suppor t ing peop le in the commun i ty , as opposed to an ins t i tu t iona l mode l of care .
Many of these resources are a lso no t des igned spec if ica l ly for ind iv idua ls w i th demen t ia .
No tab le governmen t prog rams inc lude the Prov inc ia l Home Suppor t Program and the
Pa id Fam i ly Careg iv ing Op t ion . The Prov inc ia l Home Suppor t Prog ram is in tended to
supp lemen t care prov ided by a fam i ly member for a ch i ld or an adu l t in need of care ,
inc lud ing those w i th demen t ia . Home suppor t serv ices inc lude persona l and behav ioura l
suppor ts , househo ld managemen t and resp i te . There is a max imum f inanc ia l ce i l ing to be
12 e l ig ib le for th is program and ind iv idua ls mus t undergo a func t iona l and f inanc ia l
assessmen t before qual ify ing for serv ices a nd subs idy (Prov inc ia l Home Suppor t Serv ices Prog ram Pa id Fam ily Careg iv ing Op t ion Hea l th and Commun i ty Serv ices , n .d .) .
The Pa id Fam i ly Careg iv ing Op t ion prov ides subs id ies for new Prov inc ia l Home Suppor t Prog ram c l ien ts . Th is prog ram a l lows a member of the fam i ly who l ives w i th the ind iv idua l to be pa id for par t the care they prov ide . As w i th the Prov inc ia l Home Suppor t Prog ram , there is a max imum f inanc ia l ce i l ing to be e l ig ib le for th is prog ram and
ind iv idua ls mus t undergo a func t iona l and f inanc ia l assessmen t before qua l ify ing for serv ices and subs idy (Prov inc ia l Home Suppor t Serv ices Prog ram Pa id Fam i ly
Careg iv ing Op t ion Hea l th and Commun i ty Serv ices , n .d .) . Spouses of the ind iv idua l in need of care are a lso no t e l ig ib le for th is program .
These resources are impor tan t to the curren t s tudy because they demons tra te the governmen t’s recogn i t ion of the need for ins trumen ta l suppor ts as we l l as resp i te and f inanc ia l suppor t for informa l careg ivers , inc lud ing demen t ia careg ivers . Desp i te th is acknow ledgemen t , there are no programs or mechan isms tha t prov ide educa t ion and sk i l l- bu i ld ing oppor tun i t ies for these ind iv idua ls , demons tra t ing a c lear gap in governmen t serv ices tha t suppor t informa l careg ivers in our prov ince .
The non- prof i t sec tor a lso has l im i ted resources for ind iv idua ls w i th demen t ia in
NL. Some organ i za t ions offer serv ices tha t are no t exc lus ive ly for ind iv idua ls w i th
demen t ia , bu t tha t s t i l l he lp peop le to manage the d isease and l ive comfor tab ly in the
commun i ty . One examp le is the Canad ian Red Cross Commun i ty Transpor ta t ion Serv ice .
Th is serv ice is ava i lab le on the Ava lon Pen insu la and offers dr ives to c l ien ts fac ing
barr iers such as mob i l i ty issues or l im i ted access to pub l ic transpor ta t ion . Th is serv ice is
13 par t icu lar ly he lpfu l for ind iv idua ls w i th demen t ia because Red Cross vo lun teers no t on ly prov ide r ides for c l ien ts, bu t a lso accompany ind iv idua ls on these ou t ings . Th is serv ice is no t exc lus ive ly for med ica l appo in tmen ts . C l ien ts can a lso access r ides for g rocery
shopp ing and o ther essen t ia l ac t iv i t ies of da i ly l iv ing (Newfound land and Labrador , n .d) . Ano ther examp le is the Canad ian Red Cross Hea l th Equ ipmen t Loan Program . Th is serv ice offers equ ipmen t to suppor t mob i l i ty , independence , and safe ty . I t is ava i lab le in Corner Brook , Gander , Grand Fa l ls-W indsor and S t . John’s, NL ’s larger towns and c i t ies . However , many peop le are loca ted in rura l and remo te loca t ions qu i te a d is tance ou ts ide of these areas (e .g . some rura l areas are a t leas t 4-5 hours away from a sma l l town / c i ty ).
The Sen iors Resource Cen tre of NL a lso offers prog rams tha t are no t exc lus ive ly
des igned for ind iv idua ls w i th demen t ia , bu t tha t can he lp to address some of the ir needs in the commun i ty . One prog ram of no te is the Prov inc ia l Commun i ty Peer Suppor t
Vo lun teer Prog ram. Th is program a l lows ind iv idua ls to use the ir own l ife exper iences to connec t o ther sen iors w i th serv ices and resources . Ano ther prog ram of no t e is Careg ivers Ou t of Iso la t ion , wh ich is a prov inc ia l prog ram suppor ted by the Sen iors Resource Cen tre of NL. Th is prog ram targe ts informa l fam i ly careg ivers of peop le of a l l ages inc lud ing ind iv idua ls w i th demen t ia . The ir progr ams inc lude the Careg iver L ine (a to l l free
informa t ion l ine ava i lab le 8 :30 - 4 :30 , Monday to Fr iday ) , Car ing So lu t ions (a prov inc ia l news le t ter and e- bu l le t in) , careg ivers g roup s ( loca ted in the S t . John’s area and
commun i t ies in the Cen tra l and Wes tern hea l th reg ions) , a webs i te , The Careg iver Gu ide
( informa t ion and resources tha t can be ma i led anywhere in NL ) , a referra l serv ice, and
one on one suppor t ava i lab le in person in S t . John ’s and over the phone in the res t of the
prov ince . Toge ther , these non-prof i t serv ices are impor tan t because they i l lus tra te the
14 ways non-prof i t organ iza t ions are ab le to he lp address gaps in the sys tem , however there are s t i l l l im i ted resources for peop le in NL who wan t to care for someone a t home , inc lud ing those w i th demen t ia .
The ASNL is the on ly non-prof i t organ iza t ion tha t exc lus ive ly suppor ts
ind iv idua ls w i th demen t ia in NL. They offer a resource cen ter , fam i ly suppor t g roups , one on one fam i ly mee t ings in the S t . John’s area , informa t ion packages , a news le t ter , 1-800 number , and webs i te . They are a lso in troduc ing a new prog ram ca l led the F irs t L ink Prog ram, wh ich I w i l l now d iscuss in de ta i l .
The ASNL and the F irst L ink Program
In the prev ious sec t ion , I have ou t l ined the l im i ted suppor t op t ions for demen t ia careg ivers in NL. In 2012 , the ASNL began imp lemen t ing a p i lo t phase of the F irs t L ink program in NL. As the name sugges ts , F irs t L ink’s goa l is to connec t ind iv idua ls w i th demen t ia , the ir fam i l ies , and careg ivers as ear ly as poss ib le to loca l demen t ia-spec if ic suppor ts and learn ing oppor tun i t ies (McA iney , H i l l ier , & S to lee , 2010) . The ASNL rece ives referra ls of new ly d iagnosed pa t ien ts from hea l th care profess iona ls . Ind iv idua ls can also se lf -refer to the program . Once ind iv idua ls are referred , the ASNL makes f irs t con tac t w i th the ind iv idua l w i th demen t ia and the fam i ly in order to connec t them to resources and suppor t throughou t the progress ion of the d isease .
F irs t L ink a lso offers fam i l ies a 16-week learn ing ser ies in the form of face-to -
face, 1-hour PowerPo in t presen ta t ions . Th is learn ing ser ies fo l lows the prog ress ion of the
d isease : beg inn ing w i th top ics such as “Wha t is demen t ia?” and then mov ing on to top ics
re la ted to the la ter s tages of the d isease such as manag ing cha l leng ing behav iours ,
15 nav iga t ing the hea l th care sys tem , and end of l ife care . Tab le 1 prov ides the fu l l l is t of top ics covered in the learn ing ser ies .
Tab le 1
F irs t L ink Learn ing Ser ies top ics
Ser ies Top ic
F irs t S teps Memory Loss and the Bra in
Commun ica t ion and Cop ing S tra teg ies Nav iga t ing the Sys tem
Lega l and F inanc ia l Ma t ters Resources and Suppor t Care Essen t ia ls Wha t to Expec t
Day-to -Day-Care
Unders tand ing Behav iour The Careg iver Journey Commun i ty Resources
Op t ions for Care When Care Needs are Increas ing How the Sys tem Works
Cop ing w i th Change
Care in the La ter S tages Wha t to Expec t : Advanced Demen t ia Look ing for C lues : Pa in and D is tress Unders tand ing Gr ief
The F irs t L ink Learn ing Ser ies has been imp lemen ted e lsewhere in Canada . In
2010 , McA iney and co l leagues pub l ished an eva lua t ion repor t de ta i l ing the F irs t L ink
Demons tra t ion Pro jec t tha t took p lace in On tar io , Canada . They looked a t use of F irs t
L ink from November 1 2007 to June 30 2009 across four demons tra t ion s i tes (n=3562)
(McA iney e t a l . , 2010) . They found tha t on ly 16% of reg istered A lzhe imer Soc ie ty F irs t
L ink c l ien ts a t tended the learn ing ser ies dur ing tha t t ime ( McA iney e t a l . , 2010) . Th is low
ra te of a t tendance was sugges ted to be in par t due to careg ivers’ inab i l i ty to leave the ir
care rece iver a t home un tended , "one careg iver repor ted tha t he was u nab le to leave h is
care rece iver a lone in order to a t tend the sess ions and he has dec l ined resp i te because h is
16 care rece iver becomes ag i ta ted in new s i tua t ions" (McA iney e t a l . , 2010 , p . 74) . D is tance and trave l cos ts were a lso found to be a barr ier to a t tendance : "a second careg iver repor ted tha t she l ives a t a d is tance from the cen ter where the sess ion are he ld and is unab le to ob ta in transpor ta t ion to trave l there" (McA iney e t a l . , 2010 , p . 74) .
In the spr ing of 2013 , the ASNL p lanned to de l iver the F irs t L ink Learn ing Ser ies for the f irs t t ime in the prov ince . Hea l th care profess iona ls and ASNL s taff wou ld de l iver face-to -face informa t ion sess ions over three mon ths in Moun t Pear l , NL . C l ien ts of the F irs t L ink Program were inv i ted to par t ic ipa te in person or by te leconference . The
par tnersh ip I formed w i th the ASNL a l lowed me to exp lore on l ine op t ions for the learn ing
ser ies . I chose to par tner w i th the ASNL because i t a l lowed me to focus my case s tudy on
a h igh qua l i ty hea l th resource tha t had been prev ious ly tes ted in o ther prov inces bu t tha t
had never been de l ivered on l ine . A t the ou tse t of the s tudy the ASNL ag reed to ass is t w i th
recru i tmen t of par t ic ipan ts for my s tudy , however th is proved to be a cha l lenge and a
ma jor l im i ta t ion of my s tudy tha t I w i l l d iscuss fur ther a long in the me thods sec t ion . Th is
par tnersh ip offered benef i ts to the ASNL in tha t I ac ted as a vo lun teer on l ine fac i l i ta tor ,
prov id ing ass is tance w i th the Skype techno logy for the 16-week learn ing ser ies . I a lso
recorded the le arn ing ser ies so tha t the ASNL cou ld up load i t to the ir YouTube channe l .
In th is manner , par t ic ipan ts cou ld choose to use Skype or YouTube to access the same
learn ing ser ies ma ter ia l . A t the end of the pro jec t I crea ted a Skype fac i l i ta tor-tra in ing
manua l (Append ix A) and he lped tra in a new vo lun teer in th is pos i t ion in an effor t to
promo te pro jec t sus ta inab i l i ty.
17 Te lemed ic ine and E-Hea lth in the NL Context
NL has a long h is tory of us ing techno logy to reach rura l areas of the prov ince w i th educa t ion , suppor t and hea l th serv ices . In the 1930’s FM rad ios were used to broadcas t course ma ter ia ls to teachers and s tuden ts in rura l areas of the prov ince (E lford , 1998). In the 1960s v ideo tapes on hea l th top ics were broadcas t over CBC te lev is ion to prov ide con t inued educa t ion for hea l th care profess iona ls . In 1975 , Memor ia l Un ivers i ty launched i ts f irs t te lemed ic ine pro jec t . There are many def in i t ions of te lemed ic ine , however E lford (1998) def ines i t “ the use of commun ica t ion and informa t ion techno log ies to de l iver hea l th serv ices and exchange hea l th informa t ion when d is tance separa tes the par t ic ipan ts”
(E lford , 1998 , p . 208) . E lford (1998) prov ided th is def in i t ion when he descr ibed the te lemed ic ine ac t iv i t ies a t Memor ia l Un ivers i ty in a r ev iew tha t spanned from 1975 to 1997 .
Wh i le E lford’s (1998) def in i t ion of te lemed ic ine may have been appropr ia te a t the t ime , the g row th of the In terne t has caused th is def in i t ion to be come somewha t l im i ted , as i t seems to encompass wha t has more recen t ly been ca l led E-Hea l th. Indeed , the term te lemed ic ine ex is ted long before the In terne t ( Maheu , Wh i t ten , & A l len , 2002) . The Wor ld Hea l th Organ iza t ion (WHO) offers a d ifferen t def in i t ion of te lemed ic ine , wh ich he lps to d is t ingu ish i t from E-Hea l th. T e lemed ic ine is def ined as “ the use of
te lec ommun ica t ions to d iagnose and trea t d isease and i l l hea l th ” ("E-Hea l th” , n .d .) .
Te lehea l th is ano ther term tha t is common ly used . Th is term is descr ibed as a type of
te lemed ic ine tha t focuses spec if ica l ly on in terac t ive pa t ien t -phys ic ian consu l ta t ions
(Maheu e t a l ., 2002 ) . The term E-Hea l th seems to have en tered the l i tera ture around 1999
18 and is broader in scope (McLendon , 2000) . Accord ing to the WHO , E-Hea l th inc ludes the de l ivery of hea l th informa t ion for hea l th profess iona ls and hea l th consumers , through the In terne t and e lec tron ic te lecommun ica t ions ("E-Hea l th" , n .d) . To crea te a fu l l p ic ture of NL ’s h is tor ica l use of techno logy to suppor t the de l ivery of hea l th informa t ion , I w i l l d iscuss the re levan t te lemed ic ine , te lehea l th , and E-Hea th in i t ia t ives a t Memor ia l Un ivers i ty. However , in my s tudy I c lass ify hea l th resources for demen t ia careg ivers de l ivered v ia the In terne t as a type of E-Hea l th.
A t the t ime of E lford’s (1998) pub l ica t ion there had been over 30 te lemed ic ine pro jec ts in NL. S ince then , there have been a number of in i t ia t iv es a t Memor ia l Un ivers i ty tha t use techno logy to suppor t d ifferen t aspec ts of hea l th care inc lud ing the crea t ion of the E-Hea l th Research Un i t . The E-Hea l th Research Un i t descr ibes i ts work as geared towards phys ic ians, work ing to app ly new and emerg ing commun ica t ions
techno logy to hea l th care in NL. Th is research un i t has overseen over 20 pro jec ts , w i th an add i t iona l 16 pro jec ts curren t ly in progress . In add i t ion to pro jec ts lead by the E-Hea l th Research Un i t, t here are three ma in areas Memor ia l’s te lemed ic ine and E- Hea l th pro jec ts have offered peop le l iv ing in rura l and remo te areas of NL. These inc lude : con t inu ing med ica l educa t ion for phys ic ians and nurses , consu l ta t ions and d iagnos t ic serv ices and pa t ien t and fam i ly hea l th educa t ion .
Of par t icu lar in teres t are three s tud ies tha t de l ivered prog rams v ia Memor ia l’s te lemed ic ine cen ter . The f irs t was descr ibed as “one of the ear l ies t and mos t successfu l d is tance educa t ion pro jec ts in the prov ince” , the Spec ia l Programme for Paren ts o f
Preschoo l Dea f Ch i ldren was des igned to he lp educa te paren ts in remo te areas abou t how
to care for the ir ch i ld’s needs in re la t ion to the ir d isab i l i ty (E lford , 1998 , p . 212) . In the 1-
19 year s tudy tha t began in 1977 , paren ts were prov ided w i th educa t iona l v ideo tapes tha t cou ld be v iewed a t home and week ly te lephone counse l ing . Th is remo te suppor t was comp lemen ted by res iden t ia l workshops a t the beg inn ing and end of the 12-mon th program . Paren t compe tence was found to have improved af ter the in terven t ion and the ch i ldren’s language deve lopmen t was found to be s ign if ican t ly be t ter than the
deve lopmen t expec ted w i th no in terven t ion – as pred ic ted by a g roup of independen t exper ts . A l though the pro jec t was found to be successfu l , i t on ly con t inued for a few years . Th is was a t tr ibu ted to lack of fund ing and recru i tmen t of hea l th profess iona ls to some of the larger rura l commun i t ies, wh ich made the d is tance prog ram unnecessary . Th is pro jec t i l lus tra tes the impor tance of cons ider ing sus ta inab le E-Hea l th pro jec ts tha t have the ab i l i ty to carry on af ter the research has ended . By iden t ify ing free modes of commun ica t ion (Skype and YouTube) , and bu i ld ing on an ex is t ing serv ice (F irs t L ink) , I hope to address the shor tcom ing of th is prev ious research .
The second pro jec t of no te is the D iabe tes D is tance Educa t ion Pro jec t, wh ich began in 1994 a t Memor ia l’s te lemed ic ine cen ter . The pro jec t a imed to increase
par t ic ipan ts’ know ledge of d iabe tes and se lf- care s tra teg ies ; fos ter be t ter a t t i tudes towards
d iabe tes and i ts managemen t ; promo te g rea ter se lf-care and g lycem ic con tro l , and to
assess the feas ib i l i ty of us ing d is tance educa t ion techno log ies to de l iver pa t ien t prog rams .
Spann ing a two-year per iod the pro jec t invo lved 85 peop le who par t ic ipa ted in 15 hours
of te leconferenc ing over f ive weeks. The sess ions were de l ivered v ia pr in t and v ideo
componen ts suppor ted by aud io conferenc ing and te le wr i ters – a p iece of equ ipmen t tha t
a l lows persons w i th speech and hear ing imped imen ts to commun ica te over te lephone
l ines us ing typed messages . The s tudy used a w i th in-g roup , pre- tes t /pos t- tes t des ign w i th
20 fo l low up occurr ing a t the end of the course and aga in a t 3 mon ths . The au thors found tha t , “A t the end of the course , par t ic ipan ts demons tra ted s ign if ican t improvemen t in know ledge , a t t i tude and behav iour” (E lford , 1998 , p . 220) . A lso of no te was tha t “69% of par t ic ipan ts who had e leva ted g lyca ted hemog lob in leve ls 1 a t the beg inn ing of the pro jec t improved towards the norm and 21% ach ieved norma l leve ls” (E lford , 1998 , p . 220) . Th is s tudy i l lus tra tes an in terven t ion, wh ich used mu l t ip le modes of commun ica t ion to connec t w i th par t ic ipan ts . One reason for be ing ab le to a t trac t such a large numbers of
par t ic ipan ts , may have been due to the cho ice in modes of commun ica t ion , an impor tan t cons idera t ion for the presen t s tudy .
In the th ird prog ram , Curran and Church (1999) repor t on A s tudy o f rura l women’s sa t is fac t ion w i th a breas t cancer se l f-he lp ne twork . Th is pro jec t emp loyed Memor ia l Un ivers i ty ’s Te lemed ic ine Cen tre to prov ide te leconferenced peer-suppor t sess ions from Apr i l to June of 1997 . The equ ipmen t used cons is ted of push-bu t ton
m icrophones and loudspeaker boxes , PC works ta t ions , in terface dev ices , and sof tware for fac i l i ta t ing aud io-g raph ic te leconferenc ing (Curran & Church , 1999) . The sess ions were offered on a b i-week ly bas is . A fac i l i ta tor gu ided each sess ion by iden t ify ing who was speak ing , and d irec ted ques t ions . Mos t top ics of conversa t ion were sugges ted by the par t ic ipan ts and var ied w ide ly . The responden ts’ overa l l percep t ion of the se lf-he lp suppor t program was pos i t ive . Seven ty -n ine per cen t s trong ly ag reed or ag reed tha t the te leconferenc ing sess ions addressed the ir need for soc ia l suppor t and informa t ion on breas t cancer (Curran & Church , 1999) . S ix ty- four per cen t s trong ly ag reed and 29%
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