WKH*XLGHG6HOIGHWHUPLQDWLRQSURJUDP IRUDGXOWVZLWKW\SHGLDEHWHV
LQJHQHUDOSUDFWLFH
E\
6LOMH6WDQJHODQG/LH
7KHVLVVXEPLWWHGLQIXOILOPHQWRI WKHUHTXLUHPHQWVIRUWKHGHJUHHRI
3+,/2623+,$('2&725 3K'
)DFXOW\RI+HDOWK6FLHQFHV
8QLYHUVLW\RI6WDYDQJHU 126WDYDQJHU 125:$<
ZZZXLVQR
6LOMH6WDQJHODQG/LH
,6%1
,661
3K'7KHVLV8L61R
LLL
,ZRXOGOLNHWRWKDQNDOOSDWLHQWVZKRSDUWLFLSDWHGLQWKHLQWHUYHQWLRQDQG VWXG\ DQG WKXV HQDEOHG WKLV SURMHFW DQG WKLV WKHVLV 0RUHRYHU , DP LPPHQVHO\JUDWHIXOWRDOOUHJLVWHUHGQXUVHVLQYROYHGLQWKLVVWXG\7KDQN\RX IRU DOO \RXU HIIRUW DQG SHUVHYHUDQFH WKDW PDGH WKLV SURMHFW SRVVLEOH 6SHFLDO WKDQNVJRWRP\VXSHUYLVRUV%M¡UJ.DUOVHQDQG%M¡UJ2IWHGDOIRUJLYLQJPH WKHRSSRUWXQLW\WRSDUWLFLSDWHLQWKLVUHVHDUFKSURMHFWIRU\RXUDFFHVVLELOLW\IRU JXLGLQJ PH DQG IRU IROORZLQJ PH FORVHO\ WKURXJKRXW WKH HQWLUH SURFHVV )XUWKHUPRUH,ZRXOGOLNHWRWKDQNUHVHDUFKIHOORZVDQGFROOHDJXHVDW+9/
HVSHFLDOO\SURMHFWOHDGHUDQGFRDXWKRU0DULW*UDXHDQGWKHRWKHUFROODERUDWRUV LQWKH'LD+HDOWKSURMHFWDQGWKH'LD%HVWUHVHDUFKJURXS0\WKDQNVJRDOVRWR FROOHDJXHVLQWKHUHVHDUFKJURXS+HY+HOVHDW8L6DQGWR&ULVWRSKHU31LHPLHF DW8QLYHUVLW\RI5RFKHVWHUIRUKRVWLQJPHDQGP\IDPLO\GXULQJP\H[FKDQJH VWD\LQ5RFKHVWHU1<86$,DPJUDWHIXOWRFR3K'FDQGLGDWHVLQWKH+HDOWK 7HFKQRORJ\VWXG\JURXSDQGWR.LQH*MHVGDOIRUORZWKUHVKROGSHHUVXSSRUW JRRGFRPSDQ\XVHIXOGLVFXVVLRQVDQGIRUVXSSRUWLQJP\VHQVHRIFRPSHWHQFH DQGUHODWHGQHVVDQGWKXVP\PRWLYDWLRQWRFRPSOHWHWKLVZRUN
/DVWO\,ZRXOGQRWEHDEOHWRILQLVKWKLVZRUNZLWKRXWP\ZRQGHUIXOIDPLO\
ZKRKDVVXSSRUWHGPHWKURXJKRXWWKLVHQWLUHSURFHVVP\GHDUKXVEDQG7URQG DQGP\ZRQGHUIXOFKLOGUHQ$QJHOLQDDQG'DYLG,ORYH\RX
6WDYDQJHU Silje Stangeland Lie
LY
Preface
0\ZRUNH[SHULHQFHDVDSK\VLRWKHUDSLVWFRPELQHGZLWKP\SHUVRQDO OLIHORQJ H[SHULHQFHZLWKVHOIPDQDJLQJDFKURQLFFRQGLWLRQKDVPDGH PH DZDUH RI WKH PDQ\ FKDOOHQJHV LQ KHDOWK FDUH SUDFWLWLRQHUSDWLHQW FRPPXQLFDWLRQ $ ODUJH SDUW RI ZRUNLQJ DV D SK\VLRWKHUDSLVW LV WR SURPRWHKHDOWKDQGPRWLYDWHSDWLHQWVWRVHOIPDQDJHWKHLUFRQGLWLRQV, DOZD\VKDGDJUHDWLQWHUHVWLQKRZZHDVKHDOWKFDUHSURIHVVLRQDOVDUH DEOH RU XQDEOH WR PRWLYDWH RXU SDWLHQWV WR LQVWLJDWH RU PDLQWDLQ WKH QHFHVVDU\RUUHFRPPHQGHGWUHDWPHQWPHDVXUHV7KLVLQWHUHVWOHGPHWR FRQGXFW P\ PDVWHU VWXG\ RQ D OLIHVW\OH LQWHUYHQWLRQ IRU SHRSOH ZLWK REHVLW\LQSULPDU\KHDOWKFDUH$IWHUP\PDVWHUV¶VWXG\,ZDVLQWURGXFHG WRWKHUHVHDUFKSURMHFW'LD+HDOWKIRFXVLQJRQGLDEHWHVDQGH+HDOWK, ZDVIRUWXQDWHWRJHWWKHRSSRUWXQLW\WRZRUNDVDGRFWRUDOVWXGHQWLQWKLV SURMHFW,QWKLVWKHVLV,ZLOOGHVFULEHERWKDGXOWVZLWKW\SHGLDEHWHVDQG UHJLVWHUHGQXUVHV¶H[SHULHQFHVZLWKDQH+HDOWKVHOIPDQDJHPHQWVXSSRUW LQWHUYHQWLRQ FRQGXFWHG LQ JHQHUDO SUDFWLFHV 7KLV WKHVLV WRXFKHV XSRQ EHQHILWVDQGGUDZEDFNVRIH+HDOWKLQWHUYHQWLRQVFRQGXFWHGLQSULPDU\
KHDOWKFDUHZLWKDVSHFLDOIRFXVRQPRWLYDWLRQ
Y Background
7\SHGLDEHWHVLVDFKURQLFSURJUHVVLYHFRQGLWLRQUHTXLULQJHDFKSHUVRQ WR PDQDJH WKHLU V\PSWRPV WUHDWPHQW DQG SK\VLFDO DQG SV\FKRVRFLDO FRQVHTXHQFHVRIWKHFRQGLWLRQDVZHOODVWRHQJDJHLQKHDOWK\EHKDYLRUV GDLO\'LDEHWHVVHOIPDQDJHPHQWLVFRQVHTXHQWO\DGHPDQGLQJOLIHORQJ SURFHVVUHTXLULQJPRWLYDWLRQ6LQFHPDQ\DGXOWVZLWKW\SHGLDEHWHVGR QRW UHDFK DOO UHFRPPHQGHG WUHDWPHQW JRDOV WKH IXQGDPHQWDO VWDUWLQJ SRLQW IRU WKLV SURMHFW ZDV WKH QHHG IRU HIIHFWLYH DQG LQQRYDWLYH VHOI PDQDJHPHQWVXSSRUWLQWHUYHQWLRQVIRUWKLVSDWLHQWJURXS(DUOLHUUHVHDUFK KDVSURSRVHGH+HDOWKDVDSURPLVLQJWRROLQKHDOWKFDUHIRUSHRSOHZLWK FKURQLF FRQGLWLRQV VXFK DV W\SH GLDEHWHV 7KHUHIRUH WKH VHOI PDQDJHPHQWVXSSRUWLQWHUYHQWLRQ*XLGHG6HOI'HWHUPLQDWLRQ3URJUDP ZDVDGDSWHGDVDQH+HDOWKLQWHUYHQWLRQH*6'IRUSHRSOHZLWKW\SH GLDEHWHV7KLV3K'SURMHFWSLORWHGWKHH*6'
Aims
7KHRYHUDOOSXUSRVHRIWKLVWKHVLVLVWRSURYLGHLQVLJKWLQWRKRZDGXOWV ZLWK W\SH GLDEHWHV DQG UHJLVWHUHG QXUVHV H[SHULHQFH WKH H*6' FRQGXFWHG LQ JHQHUDO SUDFWLFH DQG KRZ WKH H*6' PD\ LQIOXHQFH PRWLYDWLRQIRUGLDEHWHVVHOIPDQDJHPHQWDQGLQWHUYHQWLRQSDUWLFLSDWLRQ E\ PHDQV RI D TXDOLWDWLYH DSSURDFK 7KH PRUH VSHFLILF DLPV DUH DV IROORZV
7RH[SORUHH[SHULHQFHVZLWKWKHH*6'IURPWKHSHUVSHFWLYHRI SDUWLFLSDQWVZKRGURSSHGRXWSDSHU,
7RSURYLGHLQVLJKWVLQWRWKHLUUHDVRQVIRUGURSSLQJRXWSDSHU, 7R H[SORUH KRZ DGXOWV ZLWK W\SH GLDEHWHV H[SHULHQFH XVLQJ UHIOHFWLRQVKHHWVWRVWLPXODWHZULWWHQUHIOHFWLRQLQWKHFRQWH[WRI WKHH*6'SDSHU,,
7R H[SORUH KRZ ZULWWHQ UHIOHFWLRQ PLJKW DIIHFW PRWLYDWLRQ IRU VHOIPDQDJHPHQWRIW\SHGLDEHWHVSDSHU,,
YL
7R H[SORUH KRZ WKH H*6' LQIOXHQFHV WKH SDWLHQWQXUVH UHODWLRQVKLSIURPWKHSHUVSHFWLYHRISDWLHQWVSDUWLFLSDWLQJDQGWKH UHJLVWHUHGQXUVHVFRQGXFWLQJWKHLQWHUYHQWLRQSDSHU,,,
Methods
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esults
7KHUHVXOWVSUHVHQWHGLQWKHILUVWSDSHUVXJJHVWWKDWWKHSDUWLFLSDQWVZKR GURSSHGRXWRIWKHH*6'ORVWPRWLYDWLRQWRSDUWLFLSDWHLQWKHLQWHUYHQWLRQ SDUWLFLSDWLRQEHFDXVHRIWKHVHH[SHULHQFHV)UXVWUDWLQJWHFKQRORJ\
3HUFHLYLQJWKHFRQWHQWDVLUUHOHYDQWDQGLQFRPSUHKHQVLEOH&KRRVLQJ RWKHUDFWLYLWLHVDQGSHUVSHFWLYHVDQG/DFNLQJIDFHWRIDFHHQFRXQWHUV 7KHILQGLQJVSUHVHQWHGLQWKHVHFRQGDUWLFOHVXJJHVWGLYHUVHH[SHULHQFHV RI SDUWLFLSDQWV ZKR FRPSOHWHG WKH LQWHUYHQWLRQ 6RPH SDUWLFLSDQWV LQGLFDWHG WKDW ZULWWHQ UHIOHFWLRQ LQ WKH H*6' DIIHFWHG DZDUHQHVV DQG FRPPLWPHQWLQGLDEHWHVVHOIPDQDJHPHQWDQGSRVLWLYHO\LQIOXHQFHGWKHLU DXWRQRPRXV PRWLYDWLRQ IRU GLDEHWHV VHOIPDQDJHPHQW ZKHUHDV RWKHUV SHUFHLYHG ZULWWHQ UHIOHFWLRQ DV LQDSSOLFDEOH LQ WKHLU GLDEHWHV VHOI PDQDJHPHQW/DVWO\WKHWKLUGDUWLFOHH[SORUHGWKHLQIOXHQFHRIWKHH*6' RQWKHSDWLHQWQXUVHUHODWLRQVKLS7KHILQGLQJVLQGLFDWHWKDWERWKSDWLHQWV DQG UHJLVWHUHG QXUVHV H[SHULHQFHG WKH H+HDOWK LQWHUYHQWLRQ IDFLOLWDWHG UHFLSURFDO XQGHUVWDQGLQJ DQG IOH[LELOLW\ LQ WKH UHODWLRQVKLS +RZHYHU WKH\SUHIHUUHGDFRPELQDWLRQRIH+HDOWKDQGLQSHUVRQPHHWLQJVDVWKLV
YLL Conclusions and implications
7KLVILQGLQJVSUHVHQWHGLQWKLVWKHVLVLQGLFDWHWKDWH*6'LQLWVSUHVHQW IRUP FDQ EH GHVFULEHG DV D µGRXEOHHGJHG VZRUG¶ 7KH H*6' PD\
VXSSRUWDXWRQRPRXVPRWLYDWLRQIRUGLDEHWHVVHOIPDQDJHPHQWIRUVRPH DGXOWV ZLWK W\SH GLDEHWHV 0RUHRYHU WKH H*6' LV D QHZ µWRRO¶ IRU UHJLVWHUHGQXUVHVWRGHOLYHUVHOIPDQDJHPHQWVXSSRUWDQGLWPD\LPSURYH WKH SDWLHQWQXUVH UHODWLRQVKLS ZKLFK PD\ DOVR VWLPXODWH SDWLHQWV¶
PRWLYDWLRQ IRU GLDEHWHV VHOIPDQDJHPHQW +RZHYHU DV RXU ILQGLQJV VKRZGLYHUVHH[SHULHQFHVZLWKWKHLQWHUYHQWLRQIURPERWKSDWLHQWV¶DQG UHJLVWHUHG QXUVHV¶ SHUVSHFWLYHV WKH FXUUHQW H*6' VROXWLRQ GHPDQGV DGMXVWPHQWV UHODWHG WR WKH FRQWHQW DV ZHOO DV WHFKQRORJLFDO VROXWLRQ EHIRUH HYDOXDWLRQ DQG LPSOHPHQWDWLRQ LQ JHQHUDO SUDFWLFH ZRXOG EH IHDVLEOH
&HUWDLQ DGMXVWPHQWV RI WKH UHIOHFWLRQ VKHHWV VHHP QHFHVVDU\ HJ VLPSOLI\LQJWKHODQJXDJHDQGSRVVLEO\UHGXFLQJWKHQXPEHURIUHIOHFWLRQ VKHHWV0RUHRYHULQGLYLGXDOO\DOORZLQJSDUWLFLSDQWVWRFKRRVHUHIOHFWLRQ VKHHWV RQ ZKLFK WKH\ ZDQW WR IRFXV RQ PD\ EH QHFHVVDU\ WR VXSSRUW DXWRQRP\IRUDOOSDUWLFLSDQWV$VZHOOGHWHUPLQLQJWKHWDUJHWJURXSIRU WKH H*6' PRUH VSHFLILFDOO\ PD\ EH LPSRUWDQW DQG GHYHORSLQJ NQRZOHGJH DERXW ZKR LV HOLJLEOH IRU H+HDOWK FRXOG DVVLVW RSWLPDO DOORFDWLRQRI UHVRXUFHVLQWKHKHDOWKFDUHV\VWHP$µEOHQGHG¶YHUVLRQ PD\EHQHFHVVDU\WRUHDOL]HWKHIXOOSRWHQWLDOEHQHILWRIWKHH*6'DQG ZULWWHQDV\QFKURQRXVFRPPXQLFDWLRQVKRXOGLGHDOO\FRPSOHPHQWUDWKHU WKDQ UHSODFH LQSHUVRQ FRQWDFW WR PDLQWDLQ SDWLHQWV¶ PRWLYDWLRQ IRU LQWHUYHQWLRQSDUWLFLSDWLRQ3URYLGLQJJXLGHOLQHVDQGIUDPHZRUNVDVZHOO DV SUDFWLFDO WUDLQLQJ IRU KHDOWK FDUH SURIHVVLRQDOV LQ ZULWWHQ FRPPXQLFDWLRQ ZLWK SDWLHQWV YLD H+HDOWK PD\ EH D SULRULW\ DUHD IRU LQVWLWXWLRQVHGXFDWLQJKHDOWKFDUHSHUVRQQHODQGGHOLYHULQJKHDOWKFDUHLQ WKHQHDUIXWXUH
YLLL
3LFWXUH,OOXVWUDWLYHSLFWXUHIRUWKHH*6'
L[
H&RQVXOWDWLRQ WKH SURFHVV RI HQDEOLQJ WKH FRQVXOWDWLYH LQWHUDFWLRQ EHWZHHQ KHDOWK FDUH SURIHVVLRQDOV DQG SDWLHQWV XVLQJ HOHFWURQLF SODWIRUPVVXFKDVDZHESDJH
H+HDOWK7KHXVHRILQIRUPDWLRQDQGFRPPXQLFDWLRQWHFKQRORJLHV,&7 IRUKHDOWKFDUH
H*6' WKH VHOIPDQDJHPHQW VXSSRUW SURJUDP WKH *XLGHG 6HOI GHWHUPLQDWLRQDGDSWHGDVDQH+HDOWKLQWHUYHQWLRQIRUDGXOWVZLWKW\SH GLDEHWHV
*6' *XLGHG 6HOI'HWHUPLQDWLRQ D FRXQVHOOLQJ PHWKRG IRU VHOI PDQDJHPHQWVXSSRUW
+E$F*O\FRV\ODWHGKDHPRJORELQ ,'),QWHUQDWLRQDO'LDEHWHV)HGHUDWLRQ 05&0HGLFDO5HVHDUFK&RXQFLO
3') 3RUWDEOH 'RFXPHQW )RUPDW $Q RSHQ ILOH IRUPDW ZKLFK LV LQGHSHQGHQWRISODWIRUPDQGGHVLJQHGIRUVKDULQJGRFXPHQWV
515HJLVWHUHGQXUVH
:+2:RUOG+HDOWK2UJDQL]DWLRQ
[
List of papers
7KLVWKHVLVLVEDVHGRQWKHIROORZLQJSDSHUVZKLFKZLOOEHUHIHUUHGWRLQ WKHWH[WE\WKHLU5RPDQQXPHUDOV1
Paper I
/LH 66 .DUOVHQ % 2RUG (5 *UDXH 0 2IWHGDO % 'URSRXW )URP DQ H+HDOWK ,QWHUYHQWLRQ IRU $GXOWV ZLWK 7\SH GLDEHWHV $ 4XDOLWDWLYH 6WXG\ Journal of Medical Internet ResearchH
'2,MPLU Paper II
/LH66.DUOVHQ%1LHPLHF&3*UDXH02IWHGDO%:ULWWHQ UHIOHFWLRQ LQ DQ H+HDOWK LQWHUYHQWLRQ IRU DGXOWV ZLWK W\SH GLDEHWHV$TXDOLWDWLYHVWXG\ Patient Preference and Adherence SS
'2,KWWSVGRLRUJ33$6 Paper III
/LH66.DUOVHQ%*UDXH02IWHGDO%0DQXVFULSW7KHLQIOXHQFHRI DQ H+HDOWK LQWHUYHQWLRQ IRU DGXOWV ZLWK W\SH GLDEHWHV RQ WKH SDWLHQWQXUVHUHODWLRQVKLS$TXDOLWDWLYHVWXG\Submitted to and in review for Scandinavian journal of caring sciences.
3DSHUV , DQG ,, DUH SXEOLVKHG ³2SHQ $FFHVV´ 7KHUHIRUH UHSULQW GRHV QRW ZDUUDQW SHUPLVVLRQDVORQJDVSURSHUDIILOLDWLRQVDUHSURYLGHG
[L
$FNQRZOHGJHPHQWVLLL 3UHIDFHLY 6XPPDU\Y
$EEUHYLDWLRQVDQGGHILQLWLRQVL[
/LVWRISDSHUV[
3DUW,[LY ,QWURGXFWLRQ
%DFNJURXQG
7\SHGLDEHWHV
&KDOOHQJHVLQGLDEHWHVVHOIPDQDJHPHQWDQGWKHVLJQLILFDQFHRIVXSSRUW WRPRWLYDWHDGHTXDWHGLDEHWHVVHOIPDQDJHPHQW H+HDOWK LQWHUYHQWLRQV WR VXSSRUW PRWLYDWLRQ IRU GLDEHWHV VHOI PDQDJHPHQW 7KH*XLGHG6HOI'HWHUPLQDWLRQSURJUDPDVDQH+HDOWKLQWHUYHQWLRQ
$LPV
6WUXFWXUHRIWKHWKHVLV
7KHRUHWLFDOIUDPHZRUN 6XSSRUWLQJEDVLFSV\FKRORJLFDOQHHGVLQKHDOWKFDUHWRLPSURYHPRWLYDWLRQ IRUGLDEHWHVVHOIPDQDJHPHQW $XWRQRPRXVPRWLYDWLRQIRUGLDEHWHVVHOIPDQDJHPHQWRYHUWLPH +RZWKHH*6'DLPVWRVWLPXODWHPRWLYDWLRQIRUGLDEHWHVVHOIPDQDJHPHQW
0HWKRGV
3KLORVRSKLFDOFRQVLGHUDWLRQV
5HVHDUFKGHVLJQ
0HWKRGVIUDPHZRUN
7KHH*6'LQWHUYHQWLRQ
'HYHORSPHQWRIWKHH*6'LQWHUYHQWLRQ 'HVFULSWLRQRIWKHH*6'LQWHUYHQWLRQ 7KHZHEVROXWLRQZZZ0LQ-RXUQDOQR 6HWWLQJSDUWLFLSDQWVDQGGDWDFROOHFWLRQ
[LL
6HWWLQJ
3DUWLFLSDQWV
'DWDFROOHFWLRQ
'DWDDQDO\VLV
5HVHDUFKTXDOLW\
&UHGLELOLW\
'HSHQGDELOLW\DQGFRQILUPDELOLW\
7UDQVIHUDELOLW\
3UHXQGHUVWDQGLQJ
(WKLFDOFRQVLGHUDWLRQV
6XPPDU\RIWKHUHVXOWV 3DSHU , 'URSRXW )URP DQ H+HDOWK ,QWHUYHQWLRQ IRU $GXOWV ZLWK 7\SH GLDEHWHV$4XDOLWDWLYH6WXG\
3DSHU,,:ULWWHQUHIOHFWLRQLQDQH+HDOWKLQWHUYHQWLRQIRUDGXOWVZLWKW\SH GLDEHWHV$TXDOLWDWLYHVWXG\
3DSHU,,,$GXOWVZLWKW\SHGLDEHWHVDQGUHJLVWHUHGQXUVHVSHUFHSWLRQVRI KRZDQH+HDOWKLQWHUYHQWLRQFRQGXFWHGLQJHQHUDOSUDFWLFHLQIOXHQFHWKHLU UHODWLRQVKLS 'LVFXVVLRQ 7KHLQIOXHQFHRIH*6'RQPRWLYDWLRQIRUGLDEHWHVVHOIPDQDJHPHQW 7KHLQIOXHQFHRIH*6'LQFOXGLQJZULWWHQUHIOHFWLRQDQGFRPPXQLFDWLRQ
RQPRWLYDWLRQIRULQWHUYHQWLRQSDUWLFLSDWLRQ
0HWKRGRORJLFDOGLVFXVVLRQ
'HYHORSLQJDQGSLORWLQJDFRPSOH[LQWHUYHQWLRQ 6WUHQJWKVDQGOLPLWDWLRQV
&RQFOXVLRQV ,PSOLFDWLRQVIRUFOLQLFDOSUDFWLFH 6XJJHVWLRQVIRUIXUWKHUUHVHDUFK
5HIHUHQFHV
3DUW,, 3DSHU, 3DSHU,, 3DSHU,,,
[LLL
$SSHQGL[±,QIRUPDWLRQOHWWHUWRSDWLHQWV
$SSHQGL[±,QIRUPDWLRQOHWWHUWRUHJLVWHUHGQXUVHV
$SSHQGL[±7KHZHESDJH0LQ-RXUQDOQR
$SSHQGL[±7KHH*6'UHIOHFWLRQVKHHWV
$SSHQGL[±,QWHUYLHZJXLGHIRUSDSHU,
$SSHQGL[±,QWHUYLHZJXLGHSDWLHQWVSDSHU,,DQG,,,
$SSHQGL[±,QWHUYLHZJXLGHUHJLVWHUHGQXUVHLQWHUYLHZVSDSHU,,,
$SSHQGL[ ± &RQVROLGDWHG FULWHULD IRU UHSRUWLQJ TXDOLWDWLYH VWXGLHV &25(4 LWHPFKHFNOLVW
7DEOHRI)LJXUHV
FIGURE 1THE MOTIVATIONAL CONTINUUM- ADAPTED FROM DECI &RYAN,2000 ... 17 FIGURE 2A MODEL SHOWING HOW THE EGSD MAY STIMULATE MOTIVATION FOR DIABETES SELF-
MANAGEMENT ... 20 FIGURE 3PROCESS OF DEVELOPING AND EVALUATING A COMPLEX INTERVENTION - ADAPTED FROM
CRAIG ET AL.,2008... 24 FIGURE 4OVERVIEW OF THE EGSD ... 27
/LVWRI7DEOHV
TABLE 1OVERVIEW OF THE EGSD, PARTICIPANTS, DATA COLLECTION AND ANALYTICAL APPROACH FOR EACH PAPER ... 30 TABLE 2CHARACTERISTICS OF THE PATIENTS INTERVIEWED IN PAPER I,II AND III ... 33 TABLE 3STEPS IN THE QUALITATIVE ANALYSIS PROCESS ... 38
[LY
Part I
1 Introduction
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
<XHWDO+RZHYHUWKHHIIHFWVRIH+HDOWKLQWHUYHQWLRQVIRU SHRSOHZLWKW\SHGLDEHWHVDUHFXUUHQWO\DPELJXRXV+DQORQHWDO 3DOHWDODQGPDQ\LQWHUYHQWLRQVKDYHKLJKDWWULWLRQUDWHVRUORZ XSWDNH (\VHQEDFK *HUDJKW\ 7RUUHV /H\NLQ 3pUH]6WDEOH 0XxR] 9DUVL *DPPRQ 5XODQG :LEH :DQJEHUJ
%HUJPR -RKQVHQ$FFRUGLQJO\UHVHDUFKRQKRZSDWLHQWVDQG KHDOWKFDUHSURIHVVLRQDOVH[SHULHQFHVXFKLQWHUYHQWLRQVLVYDOXDEOHIRU WKHHYLGHQFHEDVH
7KHIXQGDPHQWDOVWDUWLQJSRLQWIRUWKLVSURMHFWZDVWKHQHHGIRUHIIHFWLYH DQG LQQRYDWLYH VHOIPDQDJHPHQW VXSSRUW LQWHUYHQWLRQV IRU DGXOWV ZLWK W\SHGLDEHWHVWRVXSSRUWWKHLUPRWLYDWLRQIRUVHOIPDQDJHPHQW3RZHUV HWDO6LQFHLWLVLPSRUWDQWWRXQGHUVWDQGXVHUH[SHULHQFHVZLWK
Introduction
H+HDOWKLQWHUYHQWLRQVWRLPSURYHWKHTXDOLW\DQGVHFXUHWKHLUXSWDNHDQG HIIHFWV WKLV WKHVLV H[SORUHV ERWK SDWLHQWV¶ DQG UHJLVWHUHG QXUVHV¶
H[SHULHQFHVZLWKDQH+HDOWKVHOIPDQDJHPHQWVXSSRUWLQWHUYHQWLRQIRU DGXOWVZLWKW\SHGLDEHWHVFRQGXFWHGLQJHQHUDOSUDFWLFHVLQ1RUZD\
1.1 Background
1.1.1 Type 2 diabetes
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
,') GHILQHV GLDEHWHV DV ³a chronic disease that occurs when the pancreas is no longer able to make insulin, or when the body cannot make good use of the insulin it produces”(IDF, 2017a).7KHSDQFUHDV SURGXFHVLQVXOLQDKRUPRQHWKDWLQFLWHVWKHERG\FHOOVWRDEVRUEJOXFRVH IURP WKH EORRG VWUHDP 2XU ERG\ FHOOV QHHG JOXFRVH IRU WKH FHOOXODU UHVSLUDWLRQLQRUGHUWRSURGXFHHQHUJ\&DUERK\GUDWHVIURPWKHIRRGVZH HDWDUHEURNHQGRZQLQWRJOXFRVHDQGWUDQVSRUWHGWRERG\FHOOVE\WKH EORRGVWUHDP+DYLQJW\SHGLDEHWHVPHDQVWKHERG\LVQRORQJHUDEOH
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
7KH UHFRPPHQGHG WUHDWPHQW JRDOV IRU SHRSOH ZLWK W\SH GLDEHWHV LQ 1RUZD\ DUH JO\FRV\ODWHG KDHPRJORELQ +E$F RI ORZGHQVLW\
OLSRSURWHLQ/'/FKROHVWHURORIPPROODQGEORRGSUHVVXUHRI
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
%DNNHHWDO7KHUHIRUHVXSSRUWLQJDQGPRWLYDWLQJDGXOWVZLWK W\SH GLDEHWHV VHOIPDQDJHPHQW RI WKHLU FKURQLF FRQGLWLRQ VHHP HVVHQWLDOLQFXUUHQWKHDOWKFDUH
Introduction
1.1.2 Challenges in diabetes self-management, and the significance of support to motivate adequate
diabetes self-management
6HOIPDQDJHPHQWFDQEHGHILQHGDV³the individual’s ability to manage the symptoms, treatment, physical and psychosocial consequences and life style changes inherent in living with a chronic condition´SDJH
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¶V SULRULWLHV DQG GHVLUHWROLYHDµQRUPDO¶OLIH2IWHGDO0RUHRYHURQHQHYHUKDV µWLPHRII¶IURPVHOIPDQDJLQJW\SHGLDEHWHV7KHSURJUHVVLRQRIWKH FRQGLWLRQ DQG WKH GDLO\ GHPDQGV RI VHOIPDQDJLQJ GLDEHWHV FDQ EH HPRWLRQDOO\ GHPDQGLQJ +DDV HW DO (DUOLHU VWXGLHV KDYH LGHQWLILHG D SHUFHLYHG ODFN RI SV\FKRVRFLDO VXSSRUW LQ KHDOWK FDUH IRU SHRSOHZLWKGLDEHWHV%DUQDUG3H\URW +ROW1LFROXFFLHWDO 3H\URW HW DO 7KHVH PDWWHUV SRLQWV WR WKH LPSRUWDQFH RI SURYLGLQJVHOIPDQDJHPHQWVXSSRUWWRSHRSOHZLWKW\SHGLDEHWHV Diabetes self-management support UHIHUV WR VXSSRUWLQJ SDWLHQWV LPSOHPHQWDQGVXVWDLQFRSLQJDELOLWLHVDQGKHDOWK\EHKDYLRXUVQHHGHGWR VHOIPDQDJH GDLO\ 3RZHUV HW DO 'LDEHWHV VHOIPDQDJHPHQW VXSSRUWGLIIHUVIURPWUDGLWLRQDOGLDEHWHVVHOIPDQDJHPHQWHGXFDWLRQDV LW VLJQLILHV WKH LPSRUWDQFH RIongoing support WR PRWLYDWH EHKDYLRXU FKDQJHPDLQWDLQPRWLYDWLRQIRUKHDOWK\EHKDYLRXUVDVZHOODVDGGUHVV SV\FKRVRFLDOFRQFHUQV+DDVHWDO5HJLVWHUHGQXUVHVFDQSOD\DQ
LPSRUWDQWUROHLQVHOIPDQDJHPHQWVXSSRUWIRUDGXOWVZLWKW\SHGLDEHWHV 'HQ (QJHOVHQ 6RHGDPDK0XWKX 2RVWHUKHHUW %DOOLHX[ 5XWWHQ -XXO 0DLQGDO )U\GHQEHUJ .ULVWHQVHQ 6DQGEDHN
$GGUHVVLQJSV\FKRVRFLDOFKDOOHQJHVSRWHQWLDOO\IDFHGWKLVSDWLHQWJURXS DORQJZLWKWKHPHGLFDOFRQFHUQVDQGUHFRPPHQGDWLRQVPD\LPSURYHWKH SDWLHQWSURYLGHU FROODERUDWLRQ 6WXFNH\ HW DO &ROODERUDWLRQ EHWZHHQUHJLVWHUHGQXUVHVRURWKHUKHDOWKFDUHSURIHVVLRQDOVDQGSDWLHQWV ZLWKW\SHGLDEHWHVLVHVVHQWLDOLQRUGHUWRSURPRWHPRWLYDWLRQDQGVNLOOV IRUVHOIPDQDJHPHQWDQGLWKDVEHHQDVVRFLDWHGZLWKLPSURYHGSDWLHQW UHSRUWHGRXWFRPHV)XQQHOO3KLOOLSV
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
1.1.3 eHealth interventions to support motivation for diabetes self-management
H+HDOWK WHFKQRORJLHV DQG LQWHUYHQWLRQV DUH SURPRWHG ZRUOGZLGH DQG WKH\ KDYH D JUHDW SRWHQWLDO WR VXSSRUW SHRSOH LQ PDQDJLQJ FKURQLF FRQGLWLRQVVXFKDVW\SHGLDEHWHV7KH\RIIHUQHZZD\VRIGHOLYHULQJ KHDOWKFDUHDWWLPHSRLQWVDQGORFDWLRQVVXLWDEOHIRUWKHSDWLHQW.UHSV
Introduction
1HXKDXVHU 7KLV WKHVLV XVH D ZLGH GHILQLWLRQ RI H+HDOWK DV VSHFLILHG E\ WKH :+2 ³eHealth is the use of information and communication technologies (ICT) for health´ :+2 H+HDOWK WHFKQRORJLHV LQFOXGH LQWHUDFWLYH ZHEVLWHV ZHE SRUWDOV WHOHKHDOWK DSSOLFDWLRQVHPDLOLQJRQOLQHFRPPXQLWLHVDVZHOODVGLYHUVHDXWRPDWHG DSSOLFDWLRQVH+HDOWKWKXVLQFOXGHVEXWLVQRWOLPLWHGWRWKHSRWHQWLDOIRU SURYLGLQJKHDOWKFDUHWKURXJKWHFKQRORJ\EDVHGFRPPXQLFDWLRQWRROV 7KHHYLGHQFHEDVHRIH+HDOWKLQWHUYHQWLRQVIRUGLDEHWHVFDUHLVUDSLGO\
LQFUHDVLQJ,QWKHIROORZLQJWH[W,SURYLGHDQRXWOLQHRIILQGLQJVIURP UHFHQWO\ SXEOLVKHG UHYLHZV $ V\VWHPDWLF UHYLHZ SXEOLVKHG LQ H[SORUHGWKHZD\VLQZKLFKLQIRUPDWLRQWHFKQRORJ\,7KDVEHHQXVHG WRLPSURYHVHOIPDQDJHPHQWIRUDGXOWVZLWKGLDEHWHVERWKW\SHDQG W\SH7KHUHYLHZLQGLFDWHVWKDWH+HDOWKRU,7LQWHUYHQWLRQVKROGD JUHDW SURPLVH WR VXSSRUW DQG PRWLYDWH GLDEHWHV VHOIPDQDJHPHQW +RZHYHUWKHUHYLHZDOVRDGGUHVVVLJQLILFDQWLVVXHVUHJDUGLQJEHQHILWV DQGDGRSWLRQRIDVZHOODVVDWLVIDFWLRQZLWKVXFKLQWHUYHQWLRQVDQGVWDWHV WKHH[LVWLQJQHHGWR³XQGHUVWDQGDQGDFFRXQWIRUSDWLHQWV¶VHOIHIILFDF\
DQG RWKHU HQDEOLQJ IDFWRUV LQ WKH GHVLJQ DQG LPSOHPHQWDWLRQ RI VXFK LQWHUYHQWLRQV´S(O*D\DUHWDO$QRWKHUUHYLHZH[SORUHG LQWHUQHW LQWHUYHQWLRQV WR VXSSRUW OLIHVW\OH PRGLILFDWLRQV IRU GLDEHWHV PDQDJHPHQWIRUDGXOWVZLWKW\SHGLDEHWHV7KLVVWXG\IRXQGWKDWWKH ILHOG RI ZHEEDVHG LQWHUYHQWLRQV IRU SDWLHQWV ZLWK W\SH GLDEHWHV LV UDSLGO\GHYHORSLQJDQGWKDWVXFKLQWHUYHQWLRQVPD\VXFFHHGLQUHDFKLQJ SDWLHQWVSURPRWLQJOLIHVW\OHPRGLILFDWLRQVDQGWKXVVXSSRUWLQJWKHVHOI PDQDJHPHQW SURFHVV RXWVLGH RI WKH FOLQLFDO VHWWLQJ &RWWHU 'XUDQW
$JQH &KHUULQJWRQ$PRUHUHFHQWUHYLHZIURPSURSRVH WKDW H+HDOWK LQWHUYHQWLRQV LPSURYH JO\FDHPLF FRQWURO IRU SHRSOH ZLWK W\SHGLDEHWHV$OKDUELHWDO7KLVUHYLHZFODLPVWKDWDSSURDFKHV ZLWK VHOIPDQDJHPHQW VXSSRUW DSSHDU PRUH SURPLVLQJ FRPSDUHG WR HOHFWURQLF PHGLFDO UHFRUGV DQG FOLQLFDO GHFLVLRQ VXSSRUW V\VWHPV +RZHYHU IXUWKHU LQYHVWLJDWLRQ LV VWLOO UHTXLUHG WR LQFUHDVH WKH XQGHUVWDQGLQJ RI KRZ ZK\ DQG ZKHQ LQIRUPDWLRQ WHFKQRORJ\ FDQ
LPSURYHWKHFDUHRISDWLHQWVZLWKW\SHGLDEHWHV$OKDUELHWDO
$QRWKHUUHFHQWUHYLHZVXJJHVWVWKDWPDQ\W\SHVRIH+HDOWKLQWHUYHQWLRQV KDYH EHHQ IRXQG WR LPSURYH VHOIPDQDJHPHQW EHKDYLRXUV DQG FOLQLFDO PHDVXUHV SDUWLFXODUO\ +E$F 7KH VWXG\ FRQFOXGHV WKDW H+HDOWK LV D SURPLVLQJDGGLWLRQWRRUGLQDU\FOLQLFDOFDUHDVLWDGGUHVVHVWKHQHHGIRU RQJRLQJ VXSSRUW IRU DGXOWV ZLWK W\SH GLDEHWHV +RZHYHU LPSRUWDQW IDFWRUV WR FRQVLGHU ZKHQ GHYHORSLQJ DQG LPSOHPHQWLQJ H+HDOWK VHOI PDQDJHPHQWVXSSRUWLQWHUYHQWLRQVLQFOXGHSDUWLFLSDQWSUHIHUHQFHVWKH XVDELOLW\RIWKHWHFKQRORJ\DQGSHUVRQQHO¶VDYDLODELOLW\WRRULHQWRUDVVLVW SDUWLFLSDQWV LI WKH\ H[SHULHQFH XVHU DQGRU WHFKQLFDO SUREOHPV 9RUGHUVWUDVVH/HZLQVNL0HONXV -RKQVRQ$FURVVVHFWLRQDO VWXG\GHPRQVWUDWHVWKDWWKHKHDOWKFDUHSURIHVVLRQDO¶VDELOLW\WRPRWLYDWH SDWLHQWV DQG VXSSRUW WKHLU DXWRQRP\ DSSHDU WR GLUHFWO\ LQIOXHQFH WKHLU DGKHUHQFH WR H+HDOWK *UDIILJQD %DUHOOR %RQDQRPL 0HQLFKHWWL 7KLVKDVLPSOLFDWLRQVIRUWKHHIIHFWLYHGHVLJQRIQHZWHFKQRORJLHV DQGLQWHUYHQWLRQVZLWKSV\FKRVRFLDOVXSSRUW
,WKDVEHHQDGYRFDWHGWKDWIXWXUHH+HDOWKLQWHUYHQWLRQVIRUGLDEHWHVFDUH VKRXOGEHWKHRU\EDVHG DQGLQFOXGHFRXQVHOOLQJ WHFKQLTXHV3DOHWDO YDQ9XJWGH:LW&OHLMQH 6QRHN:HEE-RVHSK<DUGOH\
0LFKLH 5HVHDUFK KDV DOVR GHPRQVWUDWHG WKDW H+HDOWK VHOI PDQDJHPHQW VXSSRUW LQWHUYHQWLRQV ZLWK SHUVRQDOO\ WDLORUHG IHHGEDFN KDYH ODUJHU XSWDNH FRPSDUHG WR LQWHUYHQWLRQV ZLWKRXW WKLV IHDWXUH 0RUULVRQ0RVVဨ0RUULV0LFKLH <DUGOH\DQGDGXOWVZLWKW\SH GLDEHWHV H[SUHVV D SUHIHUHQFH IRU H+HDOWK LQWHUYHQWLRQV ZLWK DQ HPSKDVLVRQHPRWLRQDODQGUROHPDQDJHPHQWDYDLODEOHDWDOOWLPHV3DO HWDO&RQVWUXFWLYHUHODWLRQVKLSVZLWKKHDOWKFDUHSURIHVVLRQDOV DUH LPSRUWDQW IDFWRUV LQ VHOIPDQDJHPHQW VXSSRUW DQG FROODERUDWLYH H+HDOWK WRROV PD\ VXSSRUW WKH UHODWLRQVKLS EHWZHHQ WKH SDWLHQW DQG UHJLVWHUHG QXUVHV IRU H[DPSOH %UDQGW &OHPHQVHQ 1LHOVHQ 6¡QGHUJDDUG
(YHQ WKRXJK YDULRXV VWXGLHV VKRZ SURPLVLQJ DOEHLW VRPHZKDW DPELJXRXV HIIHFWV RI H+HDOWK LQWHUYHQWLRQV IRU SHRSOH ZLWK GLDEHWHV
Introduction
VHOIPDQDJHPHQW VXSSRUW DQG FRXQVHOOLQJ YLD H+HDOWK LV QRW UHJXODUO\
XVHG LQ SULPDU\ KHDOWK FDUH 7KXV WKHUH LV VWLOO D SRWHQWLDO IRU GHYHORSPHQWDQGUHVHDUFKRQQXUVHOHGH+HDOWKLQWHUYHQWLRQVLQWHQGLQJ WR VXSSRUW DQG PRWLYDWH DGXOWV WR VHOIPDQDJH W\SH GLDEHWHV SDUWLFXODUO\LQJHQHUDOSUDFWLFHZKHUHPRVWRIWKHVHSDWLHQWVDUHIROORZHG RYHUWLPH
1.1.4 The Guided Self-Determination program as an eHealth intervention
,Q WKLV SURMHFW ZH UHVSRQGHG WR WKH QHHG IRU WKH GHYHORSPHQW RI LQWHUYHQWLRQV WR VXSSRUW DQG PRWLYDWH VHOIPDQDJHPHQW RI W\SH GLDEHWHVE\DGDSWLQJWKH*XLGHG6HOI'HWHUPLQDWLRQSURJUDP*6'DV DQH+HDOWKLQWHUYHQWLRQGHOLYHUHGE\UHJLVWHUHGQXUVHVLQJHQHUDOSUDFWLFH .DUOVHQHWDO7KHSULPDU\KHDOWKFDUHVHWWLQJZDVFKRVHQIRUWKH UHDVRQVRXWOLQHGLQSUHYLRXVVHFWLRQVDVZHOODVEHFDXVHWKHPDMRULW\RI SDWLHQWVZLWKW\SHGLDEHWHVDUHWUHDWHGLQJHQHUDOSUDFWLFHV%DNNHHW DO
*6'LVDVHOIPDQDJHPHQWVXSSRUWLQWHUYHQWLRQGLUHFWHGDWVXSSRUWLQJ GHFLVLRQPDNLQJ DQG SUREOHPVROYLQJ DQG DVVLVWLQJ WKH SDWLHQWV LQ GHYHORSLQJ OLIH VNLOOV ZLWK FKURQLF FRQGLWLRQV VXFK DV GLDEHWHV 7KH SXUSRVHRI*6'LVWRVXSSRUWDQGLPSURYHHDFKSHUVRQ¶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
LPSURYHVHOIPDQDJHPHQWVXSSRUWJLYHQWRHDFKSDWLHQWDQGWKXVKLVRU KHUPRWLYDWLRQIRUDGHTXDWHGLDEHWHVVHOIPDQDJHPHQW
7KH *6' ZDV RULJLQDOO\ GHYHORSHG IRU SHRSOH ZLWK µGLIILFXOW¶ W\SH GLDEHWHVEXWLWKDVVLQFHWKHQEHHQDGDSWHGWRYDULRXVRWKHUFRQGLWLRQV VXFK DV VWURNH KHPRGLDO\VLV DQG J\QHFRORJLFDO FDQFHU %URQNHQ .LUNHYROG 0DUWLQVHQ :\OOHU .YLJQH )LQGHUXS %MHUUH 6RHQGHUJDDUG 1LHOVHQ =RIIPDQQ -¡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
$NH\IHDWXUHRIWKH*6'LVWKHXVHRIUHIOHFWLRQVKHHWV7KHLGHDDQG VRPH RI WKH VKHHWV ZDV ERUURZHG IURP $UERUHOLXV $UERUHOLXV
%UHPEHUJDQGWKHRULJLQDO*6'UHIOHFWLRQVKHHWVZHUHGHYHORSHG EDVHG RQ JURXQGHG WKHRU\ VWXGLHV =RIIPDQQ 7KH UHIOHFWLRQ VKHHWVSURYLGHWKHSDWLHQWVZLWKDFKDQFHWRVWDUWUHIOHFWLRQVLQWKHSHDFH DQGTXLHWRIWKHLUKRPHV7KLVPD\DVVLVWWKHPLQEHFRPLQJDFWLYHLQWKH KHDOWKFDUHSURFHVVDQGWKXVPDNHPRUHVHOIGHWHUPLQHGGHFLVLRQV7KH SDWLHQWQXUVHFRPPXQLFDWLRQPD\EHFRPHPRUHIRFXVHGRQWKHµKHDUWRI WKH PDWWHU¶ ZKHQ SDWLHQWV DUH SUHSDUHG %\ VKDULQJ WKH SURPSWHG UHIOHFWLRQVWKHSDWLHQWDQGKHDOWKFDUHSURIHVVLRQDOVVXFKDVUHJLVWHUHG
Introduction
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
*6'H+HDOWKLQWHUYHQWLRQLVH[SODLQHGLQGHWDLOLQWKHPHWKRGVVHFWLRQ ,WLVFDOOHGWKHH*6'LQWKHIROORZLQJWH[W
3DWLHQWV¶ DQG KHDOWK FDUH SURIHVVLRQDOV¶ H[SHULHQFHV FDQ VHUYH DV D JXLGLQJSULQFLSOHZKHQGHYHORSLQJDQGSLORWLQJH+HDOWKLQWHUYHQWLRQV 7KLV PD\ LPSURYH LQWHUYHQWLRQV LQ WKH PDNLQJ DQG IRVWHU SDWLHQW HQJDJHPHQWZKHQLPSOHPHQWHG%DUHOORHWDO$VIDUDVVHHQLQ WKH OLWHUDWXUH QR SUHYLRXV VWXG\ KDV H[SORUHG ERWK SDWLHQWV¶ DQG UHJLVWHUHGQXUVHV¶H[SHULHQFHVZLWKDQH+HDOWKVHOIPDQDJHPHQWVXSSRUW LQWHUYHQWLRQIRU DGXOWVZLWKW\SHGLDEHWHVDQG WKHHIIHFWRIVXFK DQ LQWHUYHQWLRQRQWKHLUPRWLYDWLRQWRHQJDJHLQWKHLQWHUYHQWLRQDVZHOODV PRWLYDWLRQIRUGLDEHWHVVHOIPDQDJHPHQW
1.2 Aims
7KHRYHUDOOSXUSRVHRIWKLVWKHVLVLVWRSURYLGHLQVLJKWLQWRKRZDGXOWV ZLWK W\SH GLDEHWHV DQG UHJLVWHUHG QXUVHV H[SHULHQFH WKH H*6' FRQGXFWHG LQ JHQHUDO SUDFWLFH DQG KRZ WKH H*6' PD\ LQIOXHQFH PRWLYDWLRQIRUGLDEHWHVVHOIPDQDJHPHQWDQGLQWHUYHQWLRQSDUWLFLSDWLRQ E\ PHDQV RI D TXDOLWDWLYH DSSURDFK 7KH PRUH VSHFLILF DLPV DUH DV IROORZV
7RH[SORUHH[SHULHQFHVZLWKWKHH*6'IURPWKHSHUVSHFWLYHRI SDUWLFLSDQWVZKRGURSSHGRXWSDSHU,
7RSURYLGHLQVLJKWVLQWRWKHLUUHDVRQVIRUGURSSLQJRXWSDSHU, 7R H[SORUH KRZ DGXOWV ZLWK W\SH GLDEHWHV H[SHULHQFH XVLQJ UHIOHFWLRQVKHHWVWRVWLPXODWHZULWWHQUHIOHFWLRQLQWKHFRQWH[WRI WKHH*6'SDSHU,,
7R H[SORUH KRZ ZULWWHQ UHIOHFWLRQ PLJKW DIIHFW PRWLYDWLRQ IRU VHOIPDQDJHPHQWRIW\SHGLDEHWHVSDSHU,,
7R H[SORUH KRZ WKH H*6' LQIOXHQFHV WKH SDWLHQWQXUVH UHODWLRQVKLSIURPWKHSHUVSHFWLYHRISDWLHQWVSDUWLFLSDWLQJDQGWKH UHJLVWHUHGQXUVHVFRQGXFWLQJWKHLQWHUYHQWLRQSDSHU,,,
1.3 Structure of the thesis
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
Introduction
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
2 Theoretical framework
7KH VHOIGHWHUPLQDWLRQ WKHRU\ KDV EHHQ GHYHORSHG IURP HPSLULFDO PRWLYDWLRQDO UHVHDUFK DQG LV DQ RUJDQLVPLF DSSURDFK WR KXPDQ PRWLYDWLRQ DQG ZHOOEHLQJ DSSOLHG WR KHDOWK FDUH DQG KHDOWK EHKDYLRU FKDQJH LQFOXGLQJ VHOIPDQDJHPHQW RI W\SH GLDEHWHV 5\DQ 'HFL 7KH VHOIGHWHUPLQDWLRQ WKHRU\ ZDV FKRVHQ DV WKH WKHRUHWLFDO IUDPHZRUNLQWKLVWKHVLVEHFDXVHWKHH*6'LVWKHRUHWLFDOO\EDVHGRQVHOI GHWHUPLQDWLRQWKHRU\DQGEHFDXVHDQREMHFWLYHRIWKHLQWHUYHQWLRQSLORWHG LQ WKLV SURMHFW ZDV WR VWLPXODWH SDWLHQWV¶ PRWLYDWLRQ IRU GLDEHWHV VHOI PDQDJHPHQW7KHREMHFWLYHRIWKHIROORZLQJSUHVHQWDWLRQLVWRLOOXVWUDWH DQGFODULI\FRUHFRQVWUXFWVRIWKHVHOIGHWHUPLQDWLRQWKHRU\FRQVLGHUHG UHOHYDQWIRUWKLVWKHVLV
2.1 Supporting basic psychological needs in health care to improve motivation for diabetes self- management
$VGHVFULEHGLQWKHLQWURGXFWLRQRXWFRPHVRIW\SHGLDEHWHVWUHDWPHQW DUH KLJKO\ GHSHQGHQW RQ HDFK SDWLHQW¶V VHOIPDQDJHPHQW 6HOI GHWHUPLQDWLRQ WKHRU\ VXJJHVWV KHDOWK FDUH SURIHVVLRQDOV VKRXOG DWWHQG PRUH FDUHIXOO\ WR WKH SDWLHQW¶V H[SHULHQFH DQG PRWLYDWLRQ WR LPSURYH GLDEHWHVVHOIPDQDJHPHQWDQGUHDFKWKHUHFRPPHQGHGWUHDWPHQWJRDOV 5\DQHWDO
0RWLYDWLRQ LV FHQWUDO LQ SHRSOHV¶ OLYHV DQG FRQFHUQV KRZ ZH PRYH RXUVHOYHVDQGSHRSOHDURXQGXVWRDFW7KHbasic psychological needs WKHRU\ZLWKLQWKHVHOIGHWHUPLQDWLRQWKHRU\SURSRVHVGHWHUPLQDQWVRIDQG ZD\V WR VXSSRUW RU LPSURYH SHRSOH¶V PRWLYDWLRQ DQG VHOIUHJXODWLRQ 5\DQ 'HFL7KHVSHFLILFDWLRQRIWKHEDVLFSV\FKRORJLFDOQHHGV IRUDXWRQRP\DQH[SHULHQFHRIYROLWLRQDQGFKRLFHIXOQHVVFRPSHWHQFH DQH[SHULHQFHRIFDSDELOLW\DQGPDVWHU\DQGUHODWHGQHVVDQH[SHULHQFH RIVXSSRUWIURPDQGFRQQHFWLRQZLWKLPSRUWDQWRWKHUVLVFHQWUDOWRWKLV
Theoretical framework
WKHRU\1LHPLHF5\DQ 'HFL6DWLVIDFWLRQRIWKHVHWKUHHQHHGV LVQHFHVVDU\IRURSWLPDOPRWLYDWLRQSK\VLFDOKHDOWKVRFLDOLQWHJUDWLRQ DQGSV\FKRORJLFDOZHOOQHVV1JHWDO5\DQ 'HFL7KXV ZKHQ KHDOWK FDUH SURIHVVLRQDOV DQG DSSURDFKHV DUH DEOH WR VXSSRUW SHRSOH¶VVHQVHRIDXWRQRP\FRPSHWHQFHDQGUHODWHGQHVVDXWRQRPRXV LH RSWLPDO PRWLYDWLRQ IRU GLDEHWHV VHOIPDQDJHPHQW PD\ EH UHLQIRUFHG5\DQ 'HFL
,QWKHIROORZLQJWH[W,ZLOOVSHFLI\WKHWKUHHEDVLFSV\FKRORJLFDOQHHGV DV H[SODLQHG E\ WKH VHOIGHWHUPLQDWLRQ WKHRU\ DQG WKH ZD\V LQ ZKLFK WKHVHPD\EHVXSSRUWHGLQKHDOWKFDUHIRUSHRSOHZLWKW\SHGLDEHWHV 7KHFRQFHSWRIautonomyLVFHQWUDOWRKXPDQPRWLYDWLRQDQGZHOOEHLQJ
%HLQJDXWRQRPRXVPHDQVEHLQJDEOHWRDFWYROLWLRQDO$XWRQRP\UHIHUV WR D FRQJUXHQFH EHWZHHQ SHRSOH¶V DELGLQJ YDOXHV LQWHUHVWV DQG SULRULWLHVDQGWKHLUDFWLRQV5\DQ 'HFL:KHQSHRSOHFDQPDNH WKHLURZQGHFLVLRQVDQGDVVHVVPHQWVDVZHOODVVHWJRDOVEDVHGRQSHUVRQDO H[SHULHQFHVDQGSUHIHUHQFHV WKH\ PD\ H[SHULHQFH D VHQVH RI DXWR QRP\6WULYHIRUDXWRQRP\ LV LPSRUWDQW LQ KHDOWK FDUH IRU SHRSOH ZLWK W\SHGLDEHWHVDOORZLQJ SHRSOH WR DXWRQRPRXVO\ GHFLGH VHOIPDQDJH PHQWJRDOVDQGFKRRVHZKDWWKH\ZDQWDQGRQZKDWWKH\KDYHWKHFDSDFLW\
WRIRFXVRQLQWKHLU VHOIPDQDJHPHQW +RZHYHU EHLQJ DXWRQRPRXV GRHVQRWHTXDOEHLQJ LQGHSHQGHQW DV SHRSOH FDQ DOVR FKRRVH WR EH DXWRQRPRXVO\GHSHQGHQW RU LQWHUGHSHQGHQW 5\DQ /HJDWH 1LHPLHF 'HFL7KLV LV DQ LPSRUWDQW FRQVLGHUDWLRQ LQ KHDOWK FDUHDQG LQWHUYHQWLRQVLQWHQGLQJWRVXSSRUWSHRSOH¶VVHOIPDQDJHPHQW
5elatedness UHIHUV WR DQ H[SHULHQFH RI KDYLQJ D JRRG DQG PHDQLQJIXO FRQQHFWLRQZLWKRWKHUSHRSOHLQ\RXUOLIHDQGWRWUXVWDQGUHO\RQWKHP 1LHPLHF HW DO +DYLQJ D VHQVH RI UHODWHGQHVV LV QHFHVVDU\ IRU SHRSOHVPRWLYDWLRQDQGZHOOEHLQJUHODWHGWRPDQ\DVSHFWVRIWKHLUOLYHV 'HFL5\DQ +XQVOH\DQGIRULQWHUQDOL]LQJPRWLYDWLRQIRUVHOI PDQDJHPHQWRIW\SHGLDEHWHVVHH)LJXUH,ISHRSOHIHHOFRQQHFWHG WRDQGWUXVWWKHLUKHDOWKFDUHSURIHVVLRQDOVWKH\DUHPRUHOLNHO\WRDGRSW WKH YDOXHV DQG EHKDYLRUV WKH\ SURPRWH DQG DGYLVH ZLWK UHJDUGV WR
GLDEHWHVVHOIPDQDJHPHQW5\DQHWDO7KLVLQGLFDWHVWKDWKDYLQJ DVHQVHRIUHODWHGQHVVWRWKHUHJLVWHUHGQXUVHFDQEHLPSRUWDQWIRUSDWLHQWV WR EH DEOH WR PDLQWDLQ PRWLYDWLRQ IRU WKH RIWHQGHPDQGLQJ EHKDYLRUV QHFHVVDU\LQVHOIPDQDJHPHQWRIW\SHGLDEHWHV
+DYLQJ D VHQVH RI competence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
3DVW UHVHDUFK KDV VKRZQ WKDW ZKHQ WKH EDVLF SV\FKRORJLFDO QHHGV RI DXWRQRP\ UHODWHGQHVV DQG FRPSHWHQFH DUH VXSSRUWHG LQ KHDOWK FDUH SHRSOH ZLOO LPSURYH DQG PDLQWDLQ DXWRQRPRXV PRWLYDWLRQ IRU WKH FKDOOHQJLQJDQGOLIHORQJWDVNVRIGLDEHWHVVHOIPDQDJHPHQW7KLVPD\
LQWXUQUHVXOWLQLPSURYHGWUHDWPHQWRXWFRPHVVXFKDVKLJKHUTXDOLW\RI OLIH LPSURYHG PHGLFDWLRQ DGKHUHQFH GLHWDU\ VHOIFDUH DQG JOXFRVH FRQWURO$XVWLQ6HQpFDO*XD\ 1RXZHQ1JHWDO5\DQ 'HFL5\DQHWDO:LOOLDPV)UHHGPDQ 'HFL :LOOLDPVHWDO:LOOLDPVHWDO7KXVLIVHOIPDQDJHPHQW VXSSRUW DSSURDFKHV VXFK DV WKH H*6' SLORWHG LQ WKLV SURMHFW DQG WKH UHJLVWHUHG QXUVHV GHOLYHULQJ KHDOWK FDUH FDQ VXSSRUW WKHVH EDVLF SV\FKRORJLFDOQHHGVIRU SHRSOHZLWKW\SHGLDEHWHVWKHSDWLHQWVPD\
Theoretical framework
EHFRPH DXWRQRPRXVO\ PRWLYDWHG IRU VHOIPDQDJHPHQW EHKDYLRUV DQG FRQVHTXHQWO\DFKLHYHLPSURYHGWUHDWPHQWRXWFRPHV
2.2 Autonomous motivation for diabetes self- management over time
6HOIGHWHUPLQDWLRQWKHRU\ DUJXHVWKDWLWLVPRUH XVHIXOWRGHVFULEHWKH quality RI SHRSOH¶V PRWLYDWLRQ WKDQ WKH amount RI PRWLYDWLRQ IRU EHKDYLRUV&RQVHTXHQWO\PRWLYDWLRQLVGHVFULEHGRQDFRQWLQXXPIURP H[WULQVLFFRQWUROOHGWRLQWULQVLFDXWRQRPRXVPRWLYDWLRQ'HFLHWDO :KHQUHJLVWHUHGQXUVHVDWWHPSWWRVXSSRUWDQGVWLPXODWHKHDOWK\
VHOIPDQDJHPHQWEHKDYLRUVLQSDWLHQWVWKHLUPRWLYDWLRQIRUWKLVEHKDYLRU FDQUDQJHIURPDPRWLYDWLRQXQZLOOLQJQHVVWRHQJDJHLQDQDFWLYLW\WR SDVVLYHFRPSOLDQFHGRLQJWKHDFWLYLW\RUEHKDYLRUEHFDXVHRISUHVVXUH WRDFWLYHSHUVRQDOFRPPLWPHQWVHHLQJRULGHQWLI\LQJZLWKWKHYDOXHRI WKHDFWLYLW\RUEHKDYLRU5\DQ 'HFL
7KH GLIIHUHQW TXDOLWLHV RI PRWLYDWLRQ DQG EHKDYLRUDO UHJXODWLRQ DUH LOOXVWUDWHGLQ)LJXUH
)LJXUH7KHPRWLYDWLRQDOFRQWLQXXPDGDSWHGIURP'HFL 5\DQ
Theoretical framework
0RWLYDWLRQIRUVHOIPDQDJHPHQWRIW\SHGLDEHWHVRYHUWLPHUHTXLUHV WKDWSDWLHQWVLQWHUQDOL]HYDOXHVDQGVNLOOVIRUVHOIPDQDJHPHQWEHKDYLRUV DQG H[SHULHQFH VHOIGHWHUPLQDWLRQ UHODWHG WR WKHVH EHKDYLRUV 7KH GLIIHUHQWTXDOLWLHVRIPRWLYDWLRQLOOXVWUDWHGLQ)LJXUHUHIOHFWGLIIHULQJ GHJUHHV WR ZKLFK WKH YDOXH DQG UHJXODWLRQ RI EHKDYLRUV KDYH EHHQ LQWHUQDOL]HGDQGLQWHJUDWHG,QWHUQDOL]DWLRQUHIHUVWRSHRSOHµWDNLQJLQ¶D YDOXHRUUHJXODWLRQDQG LQWHJUDWLRQUHIHUVWRIXUWKHUWUDQVIRUPDWLRQRI WKDW UHJXODWLRQ LQWR D SDUW RI WKHPVHOYHV 5\DQ 'HFL 6XFK LQWHUQDOL]DWLRQDQGDXWRQRPRXVPRWLYDWLRQPD\EHLQVSLUHGZKHQSHRSOH H[SHULHQFHIXOILOOPHQWRIWKHWKUHHEDVLFSV\FKRORJLFDOQHHGVGHVFULEHG DERYH &RQGLWLRQV VXSSRUWLQJ SHRSOH¶V H[SHULHQFH RI WKH EDVLF SV\FKRORJLFDO QHHGV IRU DXWRQRP\ FRPSHWHQFH DQG UHODWHGQHVV DUH DUJXHGWRIRVWHULQWHUQDOL]DWLRQRIEHKDYLRUVDQGWKHPRVWYROLWLRQDODQG KLJKTXDOLW\IRUPRIPRWLYDWLRQDQGHQJDJHPHQWIRUHJGLDEHWHVVHOI PDQDJHPHQW 5\DQ HW DO 6LPLODUO\ EHLQJ HQJDJHG LQ DQG FRPSOHWLQJDVHOIPDQDJHPHQWVXSSRUWLQWHUYHQWLRQVXFKDVWKHH*6' UHTXLUHSDWLHQWVWREHPRWLYDWHGIRUWKLVDFWLYLW\
7KH XOWLPDWH LQWULQVLF PRWLYDWLRQ UHIHUV WR HQJDJLQJ LQ DFWLYLWLHV RU EHKDYLRUV EHFDXVH WKH\ DUH H[SHULHQFHG DV SHUVRQDOO\ LQWHUHVWLQJ RU HQMR\DEOHLQWKHPVHOYHV)RUPDQ\SHRSOHZLWKFKURQLFFRQGLWLRQVOLNH W\SHGLDEHWHVFKDQJLQJEHKDYLRUVDVSDUWRIGLDEHWHVVHOIPDQDJHPHQW RUWDNLQJSDUWLQLQWHUYHQWLRQVVXFKDVWKHH*6'PD\QRWEHLQWULQVLFDOO\
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
YLHZRIZKRWKH\DUHLQWHJUDWHGUHJXODWLRQVHH)LJXUH'HFLHWDO 7KHVHWZRODWWHUW\SHVRIUHJXODWLRQLQGLFDWHWKDWSHRSOHFDQEH DXWRQRPRXVO\ \HW H[WULQVLFDOO\ PRWLYDWHG WR HQJDJH LQ GLDEHWHV VHOI PDQDJHPHQW EHKDYLRUV RU D GLDEHWHV VHOIPDQDJHPHQW VXSSRUW LQWHUYHQWLRQVXFKDVWKHH*6'
2.3 How the eGSD aims to stimulate motivation for diabetes self-management
$V GHVFULEHG DERYH EHLQJ DEOH WR XSNHHS PRWLYDWLRQ IRU DGHTXDWH GLDEHWHV VHOIPDQDJHPHQW RYHU WLPH UHTXLUHV D VHQVH RI YROLWLRQ DQG EHKDYLQJ LQ ZD\V FRQJUXHQW ZLWK RQH¶V YDOXHV EHOLHIV DQG LQWHUHVWV +DYLQJDXWRQRPRXVPRWLYDWLRQIRUGLDEHWHVVHOIPDQDJHPHQWEHKDYLRUV HQWDLOV SHUIRUPLQJ VHOIPDQDJHPHQW EHKDYLRUV EHFDXVH RQH LGHQWLILHV ZLWKWKHYDOXHDQGWKHUHIRUHDFFHSWVGRLQJZKDWLVQHFHVVDU\ZLWKRXWD VHQVHRIH[WHUQDOSUHVVXUHRUFRQWURO'HFLHWDO
H*6'LVDVHOIPDQDJHPHQWVXSSRUWLQWHUYHQWLRQGLUHFWHGDWVXSSRUWLQJ DGXOWV ZLWK W\SH GLDEHWHV GHFLVLRQPDNLQJ DQG SUREOHP VROYLQJ DQG DVVLVWLQJWKHWKHPLQGHYHORSLQJOLIHVNLOOVWRFRSHZLWKWKHLUGLDEHWHV 7KHREMHFWLYHRIH*6'LVWRLPSURYHWKHSDWLHQWQXUVHUHODWLRQVKLSE\
IDFLOLWDWLQJ FRPPXQLFDWLRQ DOORZLQJ SDWLHQWV WR VKDUH SV\FKRVRFLDO DVSHFWVZLWKWKHUHJLVWHUHGQXUVHDQGVWLPXODWHSDWLHQWVWRVHOIPDQDJH W\SHGLDEHWHVEDVHGRQKLVRUKHURZQQHHGVDQGZLVKHVE\WDNLQJDFWLYH SDUWLQJRDOVHWWLQJDQGWUHDWPHQWGHFLVLRQV7KXVWKHLQWHUYHQWLRQDLPV WRVWLPXODWHPRWLYDWLRQIRUGLDEHWHVVHOIPDQDJHPHQWLQWKHKHDOWKFDUH DSSURDFK.DUOVHQHWDO=RIIPDQQ=RIIPDQQHWDO )LJXUHLVLQVSLUHGE\WKHVHOIGHWHUPLQDWLRQWKHRU\DQGLWSUHVHQWVD YLVXDOPRGHORIKRZFRPSRQHQWVRIWKHH*6'DLPWRVXSSRUWSDWLHQWV¶
VHQVHRIDXWRQRP\UHODWHGQHVVDQGFRPSHWHQFHWRVWLPXODWHPRWLYDWLRQ IRUGLDEHWHVVHOIPDQDJHPHQW
)LJXUH$PRGHOVKRZLQJKRZWKHH*6'PD\VWLPXODWHPRWLYDWLRQIRUGLDEHWHVVHOIPDQDJHPHQW
3 Methods
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
3.1 Philosophical considerations
4XDOLWDWLYHPHWKRGVZHUHFRQVLGHUHGDSSURSULDWHLQWKLVWKHVLVDVWKHRYHUDOO SXUSRVHLVWRSURYLGHLQVLJKWLQWRKRZDGXOWVZLWKW\SHGLDEHWHV
DQGUHJLVWHUHGQXUVHVH[SHULHQFHWKHH*6'FRQGXFWHGLQJHQHUDOSUDFWLFHDQG KRZWKHH*6'PD\LQIOXHQFHPRWLYDWLRQIRUGLDEHWHVVHOIPDQDJHPHQWDQG LQWHUYHQWLRQ SDUWLFLSDWLRQ 7KH IRFXV LV WR LOOXVWUDWH YDULDWLRQV RI WKHLU H[SHULHQFH4XDOLWDWLYHUHVHDUFKEHORQJVZLWKLQDQDWXUDOLVWLFSDUDGLJPDQG LVEDVHGRQWKHRULHVIURPSRVWPRGHUQLVPDQGVRFLDOFRQVWUXFWLRQLVPZKHUH WKH UHVHDUFKHU LV DQ DFWLYH SDUWLFLSDQW LQ WKH GHYHORSPHQW RI NQRZOHGJH
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¶VHSLVWHPRORJLFDOYLHZRIKRZZHPD\FRPH WRNQRZZKDWZHNQRZ/LQFROQ *XED3ROLW %HFN7KLV SHUPHDWHVWKHHQWLUHUHVHDUFKSURFHVVZLWKGDWDFROOHFWLRQDQGDQDO\VLV$V
Methods
WKHTXDOLWDWLYHWUDGLWLRQDFNQRZOHGJHVVHYHUDOSRVVLEOHLQWHUSUHWDWLRQVGXHWR VXEMHFWLYHGHVFULSWLRQVZKLFKFDQDOOEHYDOLG*UDQHKHLP /XQGPDQ 3ROLW %HFNWKHHSLVWHPRORJLFDOEDVLVRIP\UHVHDUFKLVWKDWERWKWKH GDWDDQGWKHLQWHUSUHWDWLRQVRIWKHWH[WDUHFRFUHDWLRQVRIWKHLQIRUPDQWVDQG P\VHOI DV WKH UHVHDUFKHU *UDQHKHLP /LQGJUHQ /XQGPDQ 0\
SHUVSHFWLYHV DQG SUHXQGHUVWDQGLQJ VKDSH WKH GDWD FROOHFWLRQ WKURXJK WKH FRQYHUVDWLRQVLQWKHLQWHUYLHZVDVZHOODVWKHGDWDDQDO\VLVFRQFHUQLQJYDULRXV DVSHFWV RI WKH SDUWLFLSDQWV¶ H[SHULHQFHV ZLWK WKH H*6' 7KH ILQGLQJV DUH SURGXFWV RI P\ LQWHUDFWLRQ ZLWK WKH LQIRUPDQWV DQG VXEVHTXHQWO\ P\
XQGHUVWDQGLQJDQGLQWHUSUHWDWLRQRIWKHWUDQVFULEHGLQWHUYLHZV.ULSSHQGRUII 7RHQVXUHWUXVWZRUWKLQHVVRIWKHILQGLQJVLQWKLVWKHVLVWKHPHDVXUHV XQGHUWDNHQ WR HQVXUH FUHGLELOLW\ GHSHQGDELOLW\ FRQILUPDELOLW\ DQG WUDQVIHUDELOLW\DFFRUGLQJWRWKHTXDOLWDWLYHWUDGLWLRQDVZHOODVDQRYHUYLHZRI P\SUHXQGHUVWDQGLQJDUHSUHVHQWHGLQ&KDSWHUDQG$SSHQGL[
3.2 Research design
7R SXUVXH WKH RYHUDOO SXUSRVH WKLV WKHVLV DGRSWHG D TXDOLWDWLYH UHVHDUFK GHVLJQ &RPSDUHG WR TXDQWLWDWLYH PHWKRGV ZKLFK ZRXOG LQYHVWLJDWH WKH HIIHFWVRIDQLQWHUYHQWLRQWKHTXDOLWDWLYHDSSURDFKLQVWHDGLQWHQGVWRJHWDQLQ GHSWK XQGHUVWDQGLQJ RI H[SHULHQFHV ZLWK WKH H*6' 3ROLW %HFN ,QGLYLGXDO LQWHUYLHZV DUH XVHIXO IRU FROOHFWLQJ WKH TXDOLWDWLYH GDWD RQ H[SHULHQFHV DQG RSLQLRQV WR DVVHVV LQWHUYHQWLRQV LQ WKHLU UHDOOLIH FRQWH[W 6DQGHORZVNLDQGZDVWKHUHIRUHXVHGDVWKHPHWKRGIRUGDWDFROOHFWLRQ
3.3 Methods framework
7KLV FXUUHQW SURMHFW LV D SLORW VWXG\ ZKLFK ZDV FRQGXFWHG WR LQIRUP WKH GHYHORSPHQWSURFHVVRIDFRPSOH[LQWHUYHQWLRQDVUHFRPPHQGHGE\7KH1HZ 0HGLFDO 5HVHDUFK &RXQFLO 05& JXLGDQFH IRU GHYHORSLQJ DQG HYDOXDWLQJ FRPSOH[ LQWHUYHQWLRQV &DPSEHOO HW DO &UDLJ HW DO 7KLV IUDPHZRUN GHILQHV FRPSOH[ LQWHUYHQWLRQV DV LQFOXGLQJ VHYHUDO LQWHUDFWLQJ FRPSRQHQWV 'HYHORSPHQW SKDVHV DQG IHDVLELOLW\SLORW VWXGLHV DUH UHFRPPHQGHG EHIRUH FRQGXFWLQJ ODUJHU HYDOXDWLRQ VWXGLHV RI FRPSOH[
LQWHUYHQWLRQV WR H[SORUH WKH SURFHGXUHV DQG DSSOLFDELOLW\ DV ZHOO DV SDUWLFLSDQWV¶H[SHULHQFHVZLWKWKHLQWHUYHQWLRQWRIDFLOLWDWHLPSURYHPHQWVDQG LQIRUPLQJ WKH GHVLJQ RI SRWHQWLDO IXUWKHU FRQILUPDWRU\ VWXGLHV RI WKH LQWHUYHQWLRQ&DPSEHOOHWDO&UDLJHWDO
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he eGSD intervention
Development ,GHQWLI\LQJWKHHYLGHQFHEDVH ,GHQWLI\LQJWKHRU\ 0RGHOOLQJSURFHVVDQGRXWFRPHV
Feasibility and piloting Testing procedures Estimating recrutiment and retention Determining sample size Evaluation $VVHVVLQJHIIHFWLYHQHVV 8QGHUVWDQGLQJFKDQJHSURFHVV $VVHVVLQJFRVWHIIHFWLYHQHVV Implementation 'LVVHPLQDWLRQ 6XUYHLOODQFHDQGPRQLWRULQJ /RQJWHUPIROORZXS
Piloting the eGSD 1.«Pure» eGSD 2.«Blended» eGSD )LJXUH3URFHVVRIGHYHORSLQJDQGHYDOXDWLQJDFRPSOH[LQWHUYHQWLRQDGDSWHGIURP&UDLJHWDO
3.4 The eGSD intervention
3.4.1 Development of the eGSD intervention
7KHRULJLQDO*6'ZDVDGDSWHGWRDGXOWVZLWKW\SHGLDEHWHVDQGIRUXVHDVDQ H+HDOWKLQWHUYHQWLRQLQWKHGHYHORSPHQWSKDVHRIWKLVSURMHFWDVLOOXVWUDWHGLQ )LJXUH7KHQXPEHURIFRQVXOWDWLRQVLQWKHLQWHUYHQWLRQZDVUHGXFHGIURP VHYHQWRIRXUDQGWKHQXPEHURIUHIOHFWLRQVKHHWVZDVUHGXFHGIURPWR WRPDNHLWPRUHWLPHHIILFLHQW7KLVSURFHVVLVH[SODLQHGLQGHWDLOLQWKHVWXG\
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µSXUH¶
RUDµEOHQGHG¶H+HDOWKLQWHUYHQWLRQDQGWKH\DSSURYHGWKHZHEVROXWLRQDV PDQDJHDEOHIRUWKHSDUWLFXODUSDWLHQWJURXS
$VVKRZQLQ)LJXUHWKHSLORWVWXG\ZDVFRQGXFWHGLQWZRZDYHV%DVHGRQ GLVFXVVLRQZLWKDQGDGYLFHIURPWKHUHJLVWHUHGQXUVHVLQYROYHGLQWKHSURMHFW DQGWKHUHVRXUFHJURXSZHLQLWLDWHGWKHH*6'DVDµSXUH¶H+HDOWKLQWHUYHQWLRQ 7KLVHQFRPSDVVHGRQHLQSHUVRQPHHWLQJDWWKHJHQHUDOSUDFWLFHSULRUWRWKH LQWHUYHQWLRQVWDUW7KHUHDIWHUWKHSDWLHQWDQGUHJLVWHUHGQXUVHFRQGXFWHGWKH H*6' LQWHUYHQWLRQ DQG FRPPXQLFDWHG RQO\ YLD VHFXUH ZHE PHVVDJHV VHH )LJXUH7KLVµSXUH¶H+HDOWKLQWHUYHQWLRQZDVFRQGXFWHGEHWZHHQ$XJXVW DQG$SULO,WWRRNWKHSDWLHQWVEHWZHHQWRZHHNVWRFRPSOHWH WKHLQWHUYHQWLRQXVLQJWKLVDSSURDFK%HFDXVHRIWKHORQJGXUDWLRQDQGEDVHG RQGLVFXVVLRQVDQGUHFRPPHQGDWLRQVIURPWKHUHJLVWHUHGQXUVHVFRQGXFWLQJ WKH LQWHUYHQWLRQ WKLV DSSURDFK ZDV FKDQJHG WR D µEOHQGHG¶ YHUVLRQ RI WKH
)RU LQIRUPDWLRQ DERXW WKH RULJLQDO *6' VHH FKDSWHU LQ WKLV WKHVLV WKH WKHVLV E\
=RIIPDQQDVZHOODVWKHDUWLFOHE\=RIIPDQQDQG.LUNHYROG
Methods
H*6' IRU WKH VHFRQG KDOI RI WKH SDUWLFLSDQWV 7KLV HQWDLOHG DQ DGGLWLRQDO PHHWLQJIROORZLQJWKHWKLUGH&RQVXOWDWLRQ$SDUWIURPWKLVDGGLWLRQDOPHHWLQJ WKHFRQWHQWRIWKHLQWHUYHQWLRQZDVLGHQWLFDOLQWKHWZRYHUVLRQV7KHUHDVRQ DQDGGLWLRQDOPHHWLQJZDVFRQGXFWHGDVDSDUWRIWKHWKLUGH&RQVXOWDWLRQLV EHFDXVHWKHUHIOHFWLRQVKHHWVEHORQJLQJWRH*6'SDUWWKUHHDLPWRJXLGHWKH SDWLHQW DQG UHJLVWHUHG QXUVH LQ FROODERUDWLRQ WR UHIOHFW RQ WKH SDWLHQWV¶
FKDOOHQJHVDQGZRUNRQG\QDPLFSUREOHPVROYLQJVHHUHIOHFWLRQVKHHWVDF
$SSHQGL[7KHUHJLVWHUHGQXUVHVEHOLHYHGWKDWLWZRXOGEHPRUHHIILFLHQWWR ZRUNZLWKWKHVHSDUWLFXODUUHIOHFWLRQVKHHWVGXULQJDQLQSHUVRQPHHWLQJ$V WKLVZDVDSLORWVWXG\ZHMXGJHGLWDSSURSULDWHWRFKDQJHWKHFRXUVHRIWKH LQWHUYHQWLRQEDVHGRQWKHSDUWLFLSDQWV¶H[SHULHQFHDQGDGYLFH7KHµEOHQGHG¶
YHUVLRQRIWKHH*6'ZDVFRQGXFWHGZLWKWKHSDWLHQWVLQFOXGHGIURP0D\
WR'HFHPEHUDQGWKHSDWLHQWVFRPSOHWHGWKLVH*6'YHUVLRQLQDERXW ZHHNV
3.4.2 Description of the eGSD intervention
)LJXUHSUHVHQWVDQRYHUYLHZRIWKHH*6'IRUDGXOWVZLWKW\SHGLDEHWHV 7KHILUVWLQSHUVRQPHHWLQJDWWKHJHQHUDOSUDFWLFHWKHIRXUH&RQVXOWDWLRQVDQG WKHLUSURJUHVVLYHIRFXVDUHSUHVHQWHGDORQJZLWKWRSLFVRIWKHUHIOHFWLRQV VKHHWV
H*6'SDUW «Your life with diabetes» H*6'SDUW «Focus for change» H*6'SDUW «Work with changes» H*6'SDUW «Changes in daily life»
Reflection sheets: D,PSRUWDQWHYHQWVDQGSHULRGVLQ\RXUOLIH E$WSUHVHQWZKDWGR\RXILQGGLIILFXOWDERXWOLYLQJZLWKGLDEHWHV" F8QILQLVKHGVHQWHQFHV±\RXUQHHGVYDOXHVKDELWVDQGRSSRUWXQLWLHV G$SLFWXUHPHWDSKRURUH[SUHVVLRQRI\RXUOLIHZLWKGLDEHWHV Reflection sheets: D5RRPIRUGLDEHWHVLQ\RXUOLIH E<RXUSODQVIRUFKDQJLQJ\RXUZD\RIOLIH Reflection sheets: D&ODULILFDWLRQRIFKDOOHQJHLQ\RXUOLIHZLWKGLDEHWHV E3UHYLRXVSUREOHPVROYLQJWKRXJKWVIHHOLQJVJRDOVDQGDFWLRQV F'\QDPLFSUREOHPVROYLQJ Reflection sheets: D%ORRGJOXFRVHVHOIPRQLWRULQJDQG\RXUUHDVRQVIRUVHOIPRQLWRULQJ E1HZVWUDWHJLHVDQGORQJWHUPSODQIRUFKDQJH F'\QDPLFMXGJPHQWRIFXUUHQWDQGIXWXUHSUREOHPVROYLQJ G©3URVDQGFRQVª In-person consultation: 7KHVHFRQGJURXSRISDUWLFLSDQWVPHWWKH51DWW JHQHUDOSUDFWLFHWRGLVFXVVWKHUHIOHFWLRQVLQH*6'SD EHIRUHPRYLQJRQWRH*6'SDUWIRXU
= = = =
First session at the GPs office
3UHSDULQJIRUVXEVHTXHQWFRQVXOWDWLRQV ,QYLWDWLRQWRZRUNWRJHWKHU 0HDVXUHPHQWRI+E$F
=
)LJXUH2YHUYLHZRIWKHH*6'Methods
7KHIRXUH&RQVXOWDWLRQVDLPWRJXLGHWKHSDWLHQWWKURXJKDSURFHVVRI EHFRPLQJ HPSRZHUHG LQ WKH VHOIPDQDJHPHQW SURFHVV 7KH UHIOHFWLRQ VKHHWVDQGDGYDQFHGFRPPXQLFDWLRQLVLQWHQGHGWRHQDEOHWKHSDWLHQWDQG WKHUHJLVWHUHGQXUVHWRHVWDEOLVKDFROODERUDWLRQLQZKLFKWKHSDWLHQWFDQ FODULI\KLVKHURZQYDOXHVDQGQHHGV7KHUHIOHFWLRQVVKHHWVDOVRLQWHQG WRVXSSRUWSHRSOHLQSULRULWL]LQJSUREOHPVDQGSURPSWVHOIGHWHUPLQHG JRDOVHWWLQJ=RIIPDQQHWDO7KHUHIOHFWLRQVKHHWVXVHGLQWKH H*6'DUHSUHVHQWHGLQWKHLUIXOOIRUPLQ$SSHQGL[
7KHSDWLHQWVFRPSOHWHGWKHHOHFWURQLFUHIOHFWLRQVKHHWVGXULQJHDFKRIWKH IRXUH&RQVXOWDWLRQVWRKHOSWKHPEHFRPHDFWLYHO\LQYROYHGLQWKHKHDOWK FDUH SURFHVV %\ UHDGLQJ SDWLHQWV¶ ZULWWHQ UHIOHFWLRQV WKH UHJLVWHUHG QXUVHV OHDUQHG DERXW WKHLU VSHFLILF GLIILFXOWLHV VXFK DV ZKDW WKH\
FXUUHQWO\ IRXQG GLIILFXOW DERXW OLYLQJ ZLWK GLDEHWHV WKHLU SODQV IRU FKDQJH DQG SUHYLRXV DQG FXUUHQW SUREOHPVROYLQJ ,Q UHVSRQVH WR WKH SDWLHQWV¶ZULWWHQUHIOHFWLRQVWKHUHJLVWHUHGQXUVHVXVHGFRPPXQLFDWLRQ VNLOOV VXFK DV PLUURULQJ µDFWLYH OLVWHQLQJ¶ DQG YDOXHFODULI\LQJ UHVSRQVHVLQ ZULWLQJRU LQSHUVRQGXULQJWKHWKLUGFRQVXOWDWLRQRIWKH µEOHQGHG¶H*6'WRPXWXDOO\H[SORUHWKHVHFKDOOHQJHV
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
3.4.3 The web solution www.MinJournal.no
7KH H*6' XVHG D VHFXUH PHVVDJLQJ VHUYLFH SURYLGHG E\ WKH SRUWDO ZZZ0LQ-RXUQDOQR 7KH SRUWDO¶V VHFXUH PHVVDJLQJ V\VWHP GHPDQGV
ORJLQZLWKHOHFWURQLFLGHQWLILFDWLRQ%DQN,'ZKLFKSURYLGHVWKHKLJKHVW OHYHORIVHFXULW\VHFXULW\OHYHO1RUZHJLDQODZUHTXLUHVWKLVIRUZHE EDVHG VHQVLWLYH LQIRUPDWLRQ WUDQVIHU VXFK DV DV\QFKURQRXV FRPPXQLFDWLRQEHWZHHQSDWLHQWVDQGKHDOWKFDUHSURIHVVLRQDOV3LFWXUHV RIWKHZHESDJHDQGXVHULQWHUIDFHDUHSUHVHQWHGLQ$SSHQGL[
3.5 Setting, participants, and data collection
7DEOHSURYLGHVDVFKHPDWLFRYHUYLHZRIHDFKRIWKHSDSHUVWKHDLPV WKH WZR YHUVLRQV RI WKH H*6' WKH SDUWLFLSDQWV GDWD FROOHFWLRQ DQG DQDO\VLVPHWKRG7KHGHWDLOVDUHH[SODLQHGWKRURXJKO\LQWKHIROORZLQJ WH[W
