and Support People in Public Health Roles.
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People in Public Health - a
study of approaches to
develop and support people in
public health roles
Re por t for t h e N a t ion a l I n st it u t e for H e a lt h
Re se a r ch Se r v ice D e liv e r y a n d Or ga n isa t ion
pr ogr a m m e
Ju ly 2 0 1 0
Repor t pr epar ed by: Jane Sout h
Cent r e for Healt h Pr om ot ion Resear ch, Leeds Met ropolit an Univ ersit y Angela Meah
Univ er sit y of Sheffield ( for m er ly Leeds Met r opolit an Univer sit y) Anne- Marie Bagnall
Cent r e for Healt h Pr om ot ion Research, Leeds Met r opolit an Univer sit y Kar ina Kinsella
Cent r e for Healt h Pr om ot ion Research, Leeds Met r opolit an Univer sit y Pet er Br anney
Cent r e for Men’s Healt h, Leeds Met r opolit an Univ er sit y Judy Whit e
Cent r e for Healt h Pr om ot ion Research, Leeds Met r opolit an Univer sit y Mar k Gam su
Addr ess for cor r espondence Dr . Jane Sout h
Reader in Healt h Pr om ot ion
Cent r e for Healt h Pr om ot ion Resear ch Room 215 Queen Squar e House, Leeds Met ropolit an Univ ersit y , Leeds, LS2 8NU
Cont ent s
Con t e n t s... 3
List of Ta ble s ... 8
List of Figu r e s ... 9
Ack n ow le dge m e n t s ... 1 0 Th e Re por t ... 1 2 1 I n t r od u ct ion ... 1 2 1.1 Lay healt h w or ker s and public healt h ... 13
1.2 St udy r at ionale ... 14
1.3 Aim s and obj ect iv es ... 15
1.4 Scope of t he st udy ... 16
1.5 St udy design ... 17
1.6 St r uct ur e of t he r epor t ... 20
2 Ba ck gr ou n d ... 2 1 2.1 The public healt h sy st em ... 21
2.2 Public healt h w or k for ce ... 22
2.3 Healt h Tr ainer s ... 23
2.4 Lay r oles in pr im ar y car e ... 24
2.5 Volunt eering ... 25
2.6 Sum m ar y ... 28
3 Lit e r a t u r e r e v ie w m e t h ods... 2 9 3.1 Scoping r eview m et hodology ... 29
3.2 Lit er at ur e r eview m et hods... 30
3.2.1 I nclusion cr it er ia ... 30
3.2.2 Sear ch st r at egy ... 32
3.2.3 St udy select ion ... 33
3.2.4 Dat a ext r act ion ... 33
3.2.5 Dat a analysis and synt hesis... 34
4 Lit e r a t u r e m a ppin g... 3 6 4.1 Lit er at ur e sear ch r esult s ... 36
4.2 Bor der line paper s ... 37
4.3 I ncluded paper s ... 38
4.3.1 I nt er vent ions ... 39
4.3.2 Lay w or k er s ... 42
4.3.3 Ser vice deliver y and or ganisat ional issues ... 44
4.4 Sum m ar y ... 45
5 Lit e r a t u r e r e v ie w fin din gs - la y r ole s... 4 6 5.1 Definit ions ... 46
5.1.1 Peer ... 46
5.1.2 Lay ... 47
5.2.1 Reach, access and com m unicat ion ... 48
5.2.2 Mobilisat ion of com m unit y r esour ces... 49
5.2.3 Lay r oles as a suppor t m echanism ... 50
5.2.4 Benefit s t o lay w or k er s ... 51
5.3 A m et hod t o deliv er an int erv ent ion, or an int erv ent ion it self? .. 51
5.4 Dim ensions of r ole ... 52
5.5 Com m on m odels ... 58
5.5.1 Peer educat ion ... 60
5.5.2 Peer support ... 61
5.5.3 Popular Opinion Leader s ... 62
5.5.4 Com m unit y or ganising ... 63
5.5.5 Br idging m odel – lay healt h adv isor s... 64
5.6 Lay w or ker s in pract ice cont ex t s ... 66
5.7 Sum m ar y ... 68
6 Lit e r a t u r e r e v ie w fin din gs – de v e lopm e n t a n d su ppor t ... 7 0 6.1 Recr uit m ent ... 70
6.2 Tr aining ... 74
6.3 Suppor t and sust ainabilit y ... 79
6.4 Pr ofessional involv em ent ... 81
6.5 Lay w or ker experiences ... 84
6.6 Ser vice user experiences ... 87
6.7 Sum m ar y ... 88
7 Ex pe r t h e a r in gs - m e t h ods... 9 0 7.1 Deliber at ive m et hods ... 90
7.2 Sam pling st r at egy ... 91
7.3 Exper t hearings pr ocess ... 91
7.4 Dat a collect ion and analy sis ... 93
8 Ex pe r t h e a r in gs fin din gs... 9 4 8.1 Evidence from pr act ice ... 94
8.2 Reasons for lay inv olv em ent ... 96
8.2.1 Com m it m ent of lay people ... 97
8.2.2 What lay people have t o offer ( t hat pr ofessionals do not ) 98 8.2.3 Pr ofessionals can lear n fr om lay people ... 99
8.2.4 Healt h im pr ov em ent ... 99
8.2.5 Financial consider at ions ... 100
8.2.6 Lay per spect iv es ... 100
8.3 Effect iv e st rat egies ... 101
8.3.1 Recr uit m ent ... 103
8.3.2 Tr aining ... 104
8.3.3 I ncent iv es and r ew ar ds ... 105
8.3.4 Suppor t and m anagem ent ... 106
8.3.5 St yles of w orking ... 107
8.3.6 St r at egic par t ner ships ... 108
8.4 Challenges ... 108
8.4.1 Or ganisat ional cult ur e... 109
8.4.2 St r uct ur es and pr ocesses ... 111
8.4.3 Wor king w it h com m unit ies ... 114
8.5 What should t he governm ent and public sect or be doing t o suppor t lay people? ... 115
8.5.2 Ways of w or king w it h com m unit ies ... 116
8.5.3 Developing st r at egic par t ner ships... 117
8.5.4 Com m issioning ... 118
8.5.5 Gover nm ent ... 118
8.6 Sum m ar y ... 119
9 Re gist e r of in t e r e st a n d sit e v isit s... 1 2 0 9.1 Regist er of I nt er est ... 120
9.1.1 Met hods ... 120
9.1.2 Findings ... 121
9.2 Sit e visit s and liaison w it h pr act ice ... 124
9.3 Sum m ar y ... 126
1 0 D iscu ssion ph a se 1 – scopin g st u dy... 1 2 7 10.1 Lim it at ions of scoping st udy ... 127
10.2 Cr it ical analysis of m odels ... 131
10.2.1 Defining r oles... 133
10.3 Rat ionale for a lay w or kfor ce ... 135
10.4 Developm ent and suppor t issues ... 137
10.4.1 Recr uit m ent and r et ent ion ... 137
10.4.2 Tr aining and developm ent ... 138
10.4.3 Managem ent , suppor t and sust ainabilit y ... 138
10.4.4 Ot her issues ... 140
10.5 Sum m ar y... 140
1 1 Ca se st u d ie s - m e t h ods... 1 4 2 11.1 Case st udy design and m et hods ... 142
11.2 Case st udy sit es ... 143
11.3 Sam pling st r at egy ... 144
11.4 Recr uit m ent and access ... 145
11.5 Dat a collect ion ... 145
11.6 Dat a analy sis ... 147
11.7 Et hical issues ... 149
1 2 Ca se st u d y fin din gs – de v e lopm e n t a n d su ppor t .... 1 5 0 12.1 Case st udy program m es ... 150
12.1.1 Sexual healt h out r each ... 150
12.1.2 Walk ing for Healt h ... 151
12.1.3 Br east feeding peer suppor t ... 152
12.1.4 Com m unit y Healt h Educat or s ... 153
12.1.5 Neighbour hood healt h pr oj ect ... 153
12.2 Mot iv at ions ... 154
12.2.1 Alt ruism ... 154
12.2.2 Car eer pat hw ay ... 155
12.2.3 Tim e is r ight ... 156
12.2.4 Healt h and social benefit s ... 157
12.2.5 Pr evious exper ience as a ser vice user ... 158
12.3 Recr uit m ent and select ion of lay people ... 159
12.3.1 Recr uit m ent m et hods ... 159
12.3.2 Select ion cr it er ia and sk ills r equired ... 160
12.3.3 CRB check s... 162
12.4 Tr aining ... 163
12.4.1 Tr aining m et hods... 163
12.4.2 Tr aining oppor t unit ies and challenges ... 164
12.5.1 Suppor t needs... 168
12.6 Pr ogr ession ... 170
12.7 Ret ent ion ... 171
12.8 Paym ent and r ew ar ds ... 172
12.8.1 Volunt eer m odels... 172
12.8.2 Using pay m ent ... 174
12.8.3 Expenses... 175
12.8.4 Benefit s ... 176
12.9 Com m issioning ... 177
12.10 Sust ainabilit y ... 179
12.11 Sum m ary... 181
1 3 Ca se st u d y fin din gs – r ole s a n d bou n d a r ie s... 1 8 2 13.1 Roles and r esponsibilit ies ... 182
13.2 Boundar y issues ... 185
13.3 Managing r isk ... 188
13.4 Value of lay r oles ... 190
13.4.1 Per ceived benefit s ... 190
13.4.2 Per ceived dr aw back s ... 192
13.5 Accept abilit y t o healt h pr ofessionals ... 193
13.6 Com m unit y accept ance ... 194
13.7 Sum m ar y... 196
1 4 Se r v ice u se r pe r spe ct iv e s... 1 9 7 14.1 Role and act ivit ies of lay w or k er ... 197
14.2 Boundar ies of r ole ... 199
14.3 Skills and qualit ies ... 200
14.4 Relat ionship w it h lay w or k er ... 201
14.5 Benefit s ... 202
14.6 Par t icipat ion in gr oup act iv it ies ... 203
14.7 Tr ansit ion t o v olunt eer ing ... 204
14.8 Sum m ar y... 206
1 5 Pu blic in v olv e m e n t ... 2 0 7 15.1 Shaping t he research ... 207
15.2 View s on dissem inat ion ... 208
15.3 Them es fr om public inv olv em ent ... 209
15.4 Sum m ar y... 209
1 6 D iscu ssion ph a se 2 – ca se st u die s... 2 1 1 16.1 Lim it at ions of case st udies ... 211
16.2 Lay w or ker s in pr act ice ... 212
16.3 Fact or s affect ing ser vice suppor t and sust ainabilit y ... 214
16.4 Taking on a public healt h r ole ... 215
16.5 Skills and qualit ies ... 217
16.6 Suppor t and developm ent ... 218
16.7 Rew ar ds and r em uner at ion ... 219
16.8 Com m issioning and link w it h healt h ser vices ... 220
16.9 Value and accept abilit y ... 221
16.10 Sum m ary... 222
1 7 Con clu sion s a n d r e com m e n da t ion s... 2 2 4 17.1 Approaches t o inv olv ing lay people in program m e deliver y ... 224
17.3 Dim ensions of r oles ... 226
17.4 Suppor t and sust ainabilit y ... 227
17.5 Com m unit y per spect iv es ... 228
17.6 St udy lim it at ions... 229
17.7 Recom m endat ions for fut ur e r esearch ... 230
17.8 Recom m endat ions for policy and pract ice ... 232
17.9 Concluding rem arks... 237 Re fe r e n ce s... 2 3 9
List of Tables
Table 1. Exam ples of public healt h pr ogr am m es involving lay
w ork ers 14
Table 2. Public Healt h Sk ills and Career Fram ew ork Levels 1- 3 23 Table 3. Br eakdown of bor der line st udies by cat egor y 37 Table 4. I nt er vent ion appr oach r epr esent ed in included paper s 41 Table 5. Tar get gr oups r epr esent ed in included paper s 42
Table 6. Lay roles described in included papers 43
Table 7. Type of or ganisat ions r epr esent ed in included paper s 44 Table 8. Role of healt h pr ofessionals/ ser vices w it hin included
papers 45
Table 9. Core dim ensions of int erv ent ions inv olv ing lay w ork ers 53
Table 10. Ex am ples of lay w or kers in pr act ice 59
Table 11. Ev idence pr esent ed on specific pr ogr am m es 95 Table 12. Sum m ar y of t hem es on r at ionales for lay involvem ent 96 Table 13. Sum m ar y of t hem es on effect ive st r at egies 102 Table 14. Sum m ar y of exper t s’ r ecom m endat ions for policy and
public sect or m anagem ent 115
Table 15. Lay wor ker t it les used by r egist er ed pr oj ect s 124
Table 16. Sit e v isit s 125
Table 17. Tr iangulat ion of sour ces – scoping st udy 130
Table 18. Ty pes of lay w ork er roles in public healt h 132
Table 19. A t ypology of lay st at us 135
Table 20. Just ificat ions for a lay w ork force 136
Table 21. Suppor t r equir ed by lay w or ker s/ volunt eer s 139
Table 22. Case st udy sit es 144
Table 23. Case st udy int erv iew s – num ber of r espondent s 146 Table 24. Serv ice user int erv iew s – num ber of r espondent s 146
Table 25. Dat a analy sis 148
Table 26. Report ed benefit s of involv ing lay people in public healt h
roles 190
List of Figur es
Figur e 1. St udy design – t r iangulat ion of evidence 18
Figur e 2. St udy select ion process 36
Figur e 3. Type of publicat ions r epr esent ed in included paper s 39
Figur e 4. Healt h focus of included paper s 40
Figur e 5. Const ruct ion of evidence in scoping st udy 121
Acknow ledgem ent s
The r esear ch t eam w ould like t o t hank ever yone w ho cont r ibut ed t o t he st udy , including t hose indiv iduals w ho gav e ev idence or part icipat ed in t he exper t hear ings, and all t hose w ho t ook par t in int er view s or facilit at ed access for t he case st udies.
The st udy w as under t aken as a par t ner ship bet w een Leeds Met r opolit an Univer sit y, NHS Br adfor d and Air edale and t he Regional Public Healt h Group ( Gover nm ent Office) , Yor kshir e & Hum ber . Repr esent at ives fr om t hese part ners w ere inv olv ed in t he st udy design, in proj ect st eering and adv isory groups, in public inv olv em ent act ivit y and in t he ex pert hearings. The follow ing m em ber s of t he st eer ing gr oup pr ovided guidance and/ or com m ent ed on dr aft s:
Pr ofessor Mim a Cat t an, Pr ofessor in Public Healt h ( Know ledge Translat ion) , Nort hum bria Univ ersit y ( form erly Leeds Met ropolit an Univ ersit y )
Dr . Pink Sahot a, Facult y of Healt h, Leeds Met ropolit an Univ er sit y
Jan Sm it hies, Healt h I nequalit ies Nat ional Suppor t Team , Depar t m ent of Healt h ( for m er ly NHS Bradfor d and Air edale)
Nurj ahan Ali Arobi, Healt h Trainer & Social Prescribing Serv ices Manager, NHS Br adfor d and Air edale
Pam Essler, Non- Ex ecut ive Direct or, NHS Bradford and Airedale
Resear ch suppor t w as provided by:
Rebecca Ayr t on, Research Officer , Cent r e for Healt h Pr om ot ion Resear ch, Leeds Met r opolit an Univer sit y, w ho cont r ibut ed t o t he lit er at ur e r eview , bibliogr aphic m anagem ent and case st udies.
Mart in Purcell, Policy Research I nst it ut e, Leeds Met ropolit an Univ ersit y , w ho undert ook t he Com m unit y Healt h Educat or s case st udy.
Ben Mit chell, I nfor m at ion Officer , Policy Resear ch I nst it ut e. Derek Charlw ood, Academ ic Librar ian.
Sue Rooke, Facult y Research Support Unit , w ho provided adm inist r at ion suppor t and cont r ibut ed t o design of st udy w ebsit e and public inv olv em ent . Mar ianne Kennedy, Resear ch Adm inist r at or , who helped design t he
lit er at ur e dat abase and Regist er of I nt er est .
Public inv olv em ent act iv it y w as support ed by Jan Sm it hies, Nurj ahan Ali Ar obi, Sar a Rushw or t h, Am ina Galar ia and Sar ah Lockyer fr om NHS
Br adfor d and Air edale. A num ber of volunt eer s, pr act it ioner s and m anager s in Bradford cont ribut ed t o t he st udy t hrough public inv olv em ent w ork shops and m eet ings.
The Repor t
1 I nt r oduct ion
‘People in Public Healt h’ is a st udy about appr oaches t o develop and suppor t lay people in public healt h roles. The use of part icipat or y appr oaches in public healt h program m es, bot h in nat ional and int ernat ional cont ext s, is w ell est ablished and seen as necessary t o deliver sust ainable im pr ovem ent s in public healt h ( Br acht and Tsour os, 1990; Rifkin et al., 2000; Wor ld Healt h Or ganizat ion, 2002) . I ndeed a cent r al ar gum ent in t he Wanless r eview s w as t hat a ‘fully engaged scenario’ w it h high lev els of public engagem ent in healt h w ould result in low er lev els of public ex pendit ure and bet t er healt h out com es ( Wanless, 2002; Wanless, 2004) . Gover nm ent policy suppor t s gr eat er com m unit y engagem ent in healt h as a m eans of addr essing public healt h pr ior it ies and t ack ling healt h inequalit ies ( Depar t m ent of Healt h, 2003) . The healt h agenda on com m unit y involvem ent r esonat es w it h ar gum ent s for cit izen em pow er m ent and gr eat er dem ocr at isat ion of ser vices, not only in t he NHS but acr oss t he public sect or , in nat ional agencies and local aut hor it ies ( Cam pbell et al., 2008) .
Recent nat ional guidance on com m unit y engagem ent not ed t he w ide var iet y of appr oaches, indicat ing t hat t hose appr oaches based on higher levels of par t icipat ion and gr eat er com m unit y cont rol w ere m ore lik ely t o lead t o incr eased healt h and social out com es1 ( Nat ional I nst it ut e for Healt h and Clinical Effect iveness, 2008) . Ther e w as a r ecom m endat ion t o r ecr uit w hat w er e t er m ed ‘agent s of change’ in com m unit ies w ho becom e involved ‘t o plan, design and deliver healt h pr om ot ion act ivit ies and t o help addr ess t he w ider social det er m inant s of healt h’ by t aking on r oles such as peer
educat or s, healt h cham pions or neighbourhood w ardens ( Nat ional I nst it ut e for Healt h and Clinical Effect iveness, 2008: 28) . The concept of
em pow er m ent , t he pr ocess of individuals and com m unit ies being enabled t o under t ake local act ion t o effect change, is seen as cor e t o healt h pr om ot ion ( Tones and Tilfor d, 2001; Wor ld Healt h Or ganizat ion, 1986; Waller st ein, 2006) . Gover nm ent policy on com m unit y em pow er m ent advocat es
incr eased cit izen involv em ent in planning and r unning serv ices ( Secr et ar y of St at e for Com m unit ies and Local Gover nm ent , 2008) and t his agenda is link ed t o t he personalisat ion of healt h and social ser vices and pat ient and public inv olv em ent ( Depart m ent of Healt h, 2005b; Depar t m ent of Healt h, 2006; Secret ar y of St at e for Healt h, 2006) . Mor e evidence is r equir ed,
1
how ever , about effect ive m echanism s for lay engagem ent and how public ser vices can best enhance, support and sust ain com m unit y involvem ent .
1 .1 La y h e a lt h w or k e r s a n d pu blic h e a lt h
This st udy is concerned w it h a part icular t ype of com m unit y engagem ent , w here lay people t ak e on roles in t he deliv ery of public healt h program m es. Lay healt h w or ker s ar e r egar ded as a valuable asset in healt h syst em s as t hey can act as a br idge bet w een com m unit ies and public ser vices ( Nem cek and Sabat ier , 2003) . I t is ar gued t hat such approaches ar e able t o enhance nat ur al social suppor t and im pr ove infor m at ion flow s bet w een ser vices and individuals ( Dennis, 2003; Rhodes et al., 2007) . Lay know ledge and
exper t ise m ay com plem ent or indeed challenge t he expert ise provided t hr ough pr ofessionals or t hr ough academ ic r esear ch ( Popay et al., 1998; Ent w ist le et al., 1998) . Peer based appr oaches have been used acr oss a var iet y of set t ings, including schools, pr isons, and w or kplaces, and w it h a r ange of populat ion gr oups ( Cuij per s, 2002; Mellanby et al., 2000; Far r ant and Levenson, 2002; Shiner , 1999; Sloane and Zim m er , 1993; Hainsw or t h and Bar low , 2003; Fair bank et al., 2000; Buller et al., 1999) . Com m unit y healt h w or ker s ar e an est ablished feat ur e of healt h syst em s in low and m iddle incom e count r ies and ar e r out inely inv olv ed in t reat m ent and pr event ive act ivit ies ( Abbat t , 2005; Hongor o and McPake, 2004) . I n Nor t h Am erica, lay healt h w ork ers are used ex t ensively w it hin public healt h pr ogr am m es, par t icular ly w her e t hese ar e t ar get ed on t he under - ser ved populat ions ( Jackson and Par ks, 1997; Ram ir ez- Valles and Ur is Br ow n, 2003) .
The sit uat ion in t he UK is less clear and t here is a confusing array of t er m inology t o cont end w it h. Cur r ent public healt h pr act ice in England encom passes a diver sit y of appr oaches including peer educat ion, befriending schem es, link w ork ers, com m unit y healt h educat or
pr ogr am m es, healt h advocat es, com m unit y healt h cham pions and healt h pr om ot ion pr oj ect s suppor t ed by volunt eers ( see Table 1) . I n addit ion, exam ples of lay engagem ent in t he deliver y of public healt h act ivit y have em er ged t hr ough differ ent nat ional init iat ives, such as Sure St ar t s ( At t r ee, 2004) and Walking for Healt h ( Nat ural England, 2009; The Count r yside Agency, 2005) . I nt er est in lay- led approaches has been fur t her st im ulat ed t hr ough t w o flagship progr am m es, t he Exper t Pat ient Pr ogr am m e
( Depar t m ent of Healt h, 2001a) and t he Nat ional Healt h Trainer I nit iat ive ( Depar t m ent of Healt h, 2004) .
Ta ble 1 . Ex a m ple s of pu blic h e a lt h pr ogr a m m e s in v olv in g la y w or k e r s
Pu blic h e a lt h pr ogr a m m e s in v olv in g la y w or k e r s w it h in Br a dfor d & Air e da le t e a ch in g PCT in 2 0 0 7
Pat hw ays t o Act ion – t raining for com m unit y healt h act ivist s
‘Healt hw ise’ t ut ors running groups around physical act iv it y and healt h t opics
Healt h appr ent iceship schem es
Healt h t r ainer s
Br east feeding peer suppor t
Asian out r each w or ker s
Buddy schem es ar ound HI V/ AI DS
Volunt ary w alk leaders
Com m unit y coaches
Lay w or ker s r unning food co- ops & cook and eat sessions
Healt hy Living Cent r es
Sur e St ar t s/ Childr en’s Cent r es
1 .2 St u dy r a t ion a le
The Nat ional I nst it ut e of Healt h Resear ch ( NI HR) Ser vice Deliver y and Or ganisat ion ( SDO) public healt h r esear ch pr ogr am m e w as init iat ed in 2007 and public/ com m unit y engagem ent is one of four w ork ar eas ( Peckham et al., 2008) . An ear lier Hom e Office r eview on com m unit y engagem ent ( Roger s and Robinson, 2004: 52) r ecom m ended m or e r esear ch t o
inv est igat e bot h: ‘issues around people’s w illingness and capacit y t o becom e act iv e cit izens and issues around t he w illingness and capacit y of public bodies t o m ake best use of act ive cit izens’. I dent ified r esear ch gaps
included w hat sort of skills and support w er e needed, par t icular ly t o enable t he part icipat ion of groups deem ed hard- t o- reach.
Given t he w ide applicat ion of lay healt h w or ker pr ogr am m es and t he
developm ent of pr act ice in t he UK, it w as ident ified t hat m or e needed t o be know n about t he accept abilit y and adapt abilit y of t hese appr oaches in differ ent social cont ext s. A num ber of int ernat ional rev iew s of com m unit y healt h w or ker s w er e available, som e relat ing prim ar ily t o dev eloping count r ies ( Lew in et al., 2005; Nem cek and Sabat ier , 2003; Rhodes et al., 2007; Wor ld Healt h Or ganizat ion, 2007) , but t her e had been no synt hesis of UK public healt h pr act ice. Furt herm ore, t her e w er e ident ified gaps in
[image:15.595.124.509.167.374.2]pr ogr ession w er e linked t o w or kfor ce developm ent , one of t he ot her r esear ch ar eas in t he SDO public healt h pr ogr am m e.
1 .3 Aim s a n d obj e ct iv e s
The ‘People in Public Healt h’ st udy sought bot h t o pr ovide a synt hesis of ev idence in a com plex area of public healt h pract ice and t o det erm ine how public healt h serv ices can best develop and support lay people inv olv ed in deliver ing public healt h pr ogr am m es. The br oad aim s of t he st udy w er e:
To im prov e underst anding of v alid approaches t o ident ify ing,
dev eloping and support ing lay people w ho t ake on public healt h roles in com m unit y public healt h act ivit ies
To under t ake r esear ch on public per spect ives r egar ding t he accept abilit y and v alue of lay people in public healt h roles
To aid public healt h com m issioning and planning by ident ifying
elem ent s of good pr act ice and how t hese m ight be applied t o differ ent cont ext s.
A ser ies of specific r esear ch obj ect ives w er e ident ified r elat ing t o differ ent elem ent s of t he st udy:
To undert ake a scoping st udy on approaches t o inv olv ing lay people in public healt h roles t hrough a lit erat ur e r eview and a r eview of cur r ent pr act ice
To present a crit ical analy sis of m odels of inv olv ing lay people in public healt h r oles including defining differ ent dim ensions of ‘lay’ and
prov iding clarit y ov er t he core elem ent s of different m odels
To inv est igat e how public healt h serv ices current ly recruit , dev elop, m anage and support lay people in public healt h roles
To ident ify fact or s affect ing t he developm ent , effect iv eness and
sust ainabilit y of serv ices/ program m es w hich seek t o inv olv e lay people in public healt h roles
To exam ine t he per spect ives of com m unit y m em ber s w it h exper ience of public healt h serv ices/ program m es deliv er ed or led by lay people
To pr oduce a planning m at r ix br inging t oget her key evidence and
guidance t o assist public healt h serv ices com m ission, develop and support program m es inv olv ing lay people in public healt h roles
To m ake r ecom m endat ions for fur t her r esear ch and evaluat ion of
serv ice m odels.
com m issioning and pr act ice w ould t her efor e have im pr oved access t o appr opr iat e evidence t o aid planning, m anagem ent and deliver y.
1 .4 Scope of t h e st u dy
The scope of t he st udy w as necessar ily broad, due t o t he div ersit y of public healt h pr act ice and t he need t o t ake an induct iv e appr oach t o ident ifying m odels. Nonet heless, t her e w as a need t o define t he boundar ies of t he st udy in or der t o focus t he enquiry and avoid unnecessar y duplicat ion of result s. The st udy has ex am ined lay roles in t he cont ex t of public healt h pr ogr am m es, int er vent ions and serv ices. The assum pt ion w as t hat healt h serv ices hav e a role in recruit ing, t raining and suppor t ing lay w or ker s. This placed t r ue nat ur al helper s, individuals em bedded w it hin social net w orks w ho under t ake suppor t act ivit ies and dissem inat e lay know ledge as par t of t heir daily life ( Dennis, 2003; Eng et al., 1997) , out side t he scope of t he st udy. I t is r ecognised, how ever , t hat com m unit y net w orks and inform al syst em s of self help and social suppor t ar e key det er m inant s of healt h ( Wilkinson and Mar m ot , 2003) and t hat t he act ions of m any com m unit y v olunt eers m ak e an inv aluable cont ribut ion t o t he healt h of individuals and com m unit ies.
The ev ident challenge of defining lay roles and coping w it h bot h div ersit y of pr act ice and cont est ed t er m inology led t he adopt ion of a w or king definit ion of a lay healt h w or ker , adapt ed fr om a Cochr ane r eview ( Lew in et al., 2005)2:
“ I ndiv iduals car r ying out a public healt h funct ion, t r ained or suppor t ed in som e w ay in t he cont ex t of t he int erv ent ion, and hav ing no form al
pr ofessional or par apr ofessional cert ificat ed or degr ee/ t er t iar y educat ion.”
This definit ion w as felt t o be br oad enough t o encom pass differ ent t ypes of r oles and act ivit ies, but w as not cir cum scr ibed by t he concept of
volunt eer ing as t her e w as anecdot al evidence fr om UK pract ice, and fr om t he r eview by Lew in et al., t hat som e program m es ut ilised pay m ent s. I t w as not ed t hat alt er nat iv e definit ions highlight ed t he r elat ionship bet w een t he lay per son and t heir com m unit y, for exam ple, t he World Healt h
Or ganizat ion ( 2007) definit ion st at es t hat com m unit y healt h w or ker s should be select ed by t heir ow n com m unit ies, but since t his aspect w as ident ified as a pot ent ial ar ea for invest igat ion ( see Sw ider , 2002; Sout h et al., 2007) , it w as not included in t he w ork ing definit ion.
2
Lew in et al.’s ( 2005) r eview focused on lay w or ker s in pr im ar y healt h and com m unit y car e as opposed t o public healt h. The aut hor s define lay healt h w or ker s as any healt h w ork er ( 1) car r ying out t he funct ions r elat ed t o healt hcar e deliv er y ( 2) t r ained in som e w ay in t he cont ext of t he int er vent ion ( 3) having no for m al pr ofessional or par apr ofessional
Nor t h Am er ican lit er at ur e r efer s t o t he concept of par apr ofessionals w her e lay w ork ers becom e professionalized and fully int egrat ed int o t he healt h syst em ( Eng et al., 1997) . While t he dist inct ions bet w een differ ent t ypes of roles are finely draw n, approaches inv olv ing em ploy m ent w it hin healt h serv ices are m ore lik ely t o be associat ed w it h ex t ensiv e t r aining and super vision, and t her efor e w er e not included in t he st udy. The r oles of non-clinical professionals and ot hers w ho hav e som e inv olv em ent in public healt h as par t of t heir em ploym ent w er e also excluded because t hese gr oups ar e alr eady consider ed par t of t he public healt h w or kfor ce ( Depar t m ent of Healt h, 2001b) . While t he nat ional healt h t r ainer
program m e is predicat ed on t he not ion of lay adv ice and support , it is t he subj ect of ot her r esear ch pr ogr am m es and w as t her efor e consider ed out side t he scope of ‘People in Public Healt h’.
Public healt h act iv it y is m ult i- disciplinary in nat ure, so in order t o reflect t he key ar eas of public healt h act ion in England and t o set r ealist ic lim it s for t he lit er at ur e r eview , t his st udy focused on t he Choosing Healt h pr ior it ies
( Depar t m ent of Healt h, 2004) . I t w as r ecognised t hat t here ar e parallel fields of w ork w here healt h and social program m es ut ilise lay w ork ers, for exam ple, in peer suppor t of par ent ing ( for exam ple see Aboud, 2007; Ar t ar az and Thur st on, 2006; Oakley et al., 2002) or in m anagem ent of long t er m condit ions ( for exam ple see Am erican Associat ion of Diabet es, 2003; Bakski et al., 2008; Brow n et al., 2007; Gr iffit hs et al., 2007) . These ar eas evident ly cont r ibut e t o public healt h but w er e not included in t he scope of t he st udy. School based int er vent ions w er e also excluded as it w ould have r equir ed a m or e ext ensive st udy t o r esear ch t he issues around involving children and y oung people. Not w it hst anding t he ev ident link s bet w een lay r oles in pr ogr am m e deliver y and w ider com m unit y engagem ent pr ocesses, it w as deem ed t hat pat ient and public inv olv em ent , part icipat ory research and ot her form s of collect iv e part icipat ion in serv ice planning and
developm ent w ere out side t he scope of t his st udy.
I n sum m ary , w hile adopt ing an induct ive appr oach t o scope t he r ange of possible m odels, t he pr im ar y focus of t his st udy has been on lay people w it h no pr ofessional educat ion or background, who t ake on ident ified public healt h r oles and ar e suppor t ed by pr ofessionals in t he cont ext of a public healt h int er vent ion, pr ogr am m e or ser vice. The Choosing Healt h pr ior it ies ( Depar t m ent of Healt h, 2004) pr ovided an addit ional fr am ew or k for t he st udy .
1 .5 St u dy de sign
t erm inology . An induct iv e approach w as t ak en in order t o be able t o int er r ogat e t he not ion of lay r oles and ot her cont est ed concept s, and t o exam ine t he boundar ies of pr act ice. Ther e w as an aspir at ion t o br ing gr eat er clar it y and deepen under st anding of t hese appr oaches and fur t her m or e t o ensur e t hat t he r esear ch r esult s w er e r elevant and
applicable t o current public healt h pr act ice. The concept ual fr am ew or k for t he st udy t herefore drew on a br oad not ion of public healt h evidence t hat seeks t o incor por at e differ ent sour ces of evidence including pr act ice based evidence and lay per spect ives ( McQueen, 2001; Raphael, 2000) . The st udy design w as based pr im ar ily on qualit at ive m et hodology and involved t he t r iangulat ion of bot h dat a sour ces and m et hods ( Pat t on, 2002) , gat her ing exist ing exper ient ial know ledge, public per spect ives and published
lit er at ur e, t o pr ovide a com pr ehensiv e pict ur e of t he m ain ser vice deliver y and or ganisat ional issues ( Figur e 1) . This w as inform ed by ( Rada et al., 1999) ’s m odel of evidence based pur chasing of healt h prom ot ion w it h it s four dom ains: scient ific; or ganizat ional; socio- cult ur al; and healt h
pr om ot ion.
Figu r e 1 . St u dy de sign – t r ia n gu la t ion of e v ide n ce
The st udy w as conduct ed in t w o dist inct phases over a 27 m ont h per iod, 2007- 9. Bot h phases of t he st udy r eceived NHS et hical appr oval fr om Leeds West Resear ch Et hics Com m it t ee. A synopsis of t he m ain m et hods is
prov ided below , w hile furt her descript ion of t he m et hodology, m et hods and sam pling is cov ered in lat er sect ions of t he report .
Scient ific Know ledge
Lit e r a t u r e Re v ie w
Pr act ice based know ledge
Ex pe r t H e a r in gs
Pr im ar y Resear ch
[image:19.595.126.491.385.602.2]Phase 1 Scoping st udy
A scoping st udy w as under t aken t o ident ify t he r ange and t ypes of lay r oles and how public healt h ser vices support ed t his t ype of engagem ent . The scoping st udy had t hree linked elem ent s:
1. A com prehensiv e lit erat ure rev iew of lay engagem ent in public healt h roles t o ident ify em erging m odels of lay roles and t hem at ic issues for ser vice deliv er y and or ganisat ion.
2. A ser ies of exper t hear ings w here key inform ant s w it h r elevant exper ience and exper t ise pr esent ed evidence. The exper t hear ings w er e based on deliber at ive m et hods in or der t o explor e differ ent per spect ives and st im ulat e debat e on cont est ed issues.
3. Liaison wit h pr act ice t hr ough t he est ablishm ent of a Regist er of I nt er est and a sm all num ber of sit e visit s t o gain fir st hand infor m at ion about cur r ent pr act ice.
The different sources of ev idence in Phase 1 allow ed som e t riangulat ion of findings, and also fur t her sour ces of evidence t o be ident ified. Phase 1 ident ified different m odels in public healt h pract ice and led t o t he select ion of case st udies for Phase 2.
Ph a se 2 Ca se st u die s
Phase 2 ent ailed prim ar y research t o inv est igat e serv ice deliv ery and
or ganisat ional issues and gain consum er per spect ives on lay r oles. Five case st udies of public healt h pr ogr am m es/ proj ect s w er e under t aken w it h each case r eflect ing a differ ent m odel of pract ice and t ar get populat ion. The case st udies gat hered in- dept h qualit at iv e inform at ion from different st ak eholder gr oups including public healt h com m issioner s, pr act it ioner s, par t ner
or ganisat ions, lay w or ker s, volunt eer s and serv ice user s.
At t he end of t he st udy, findings from Phase 1 and 2 w er e br ought t oget her and t he m ain issues for policy , pract ice and r esear ch w er e sum m ar ised. These findings w ill be used t o dev elop guidance for t hose planning and im plem ent ing public healt h program m es inv olv ing lay w ork ers.
The st udy w as under t aken as a par t ner ship bet w een Leeds Met r opolit an Univer sit y, NHS Br adfor d and Air edale and t he Regional Public Healt h Gr oup, Gover nm ent Office, Yor kshire and Hum ber . Repr esent at ives fr om t hese par t ner s w er e fully involved in t he developm ent of t he st udy proposal, as par t of t he st udy st eer ing and advisor y gr oups, and in t he expert
dr aw on differ ent sour ces of evidence t her eby enhancing t he validit y of t he r esult s. As par t of t he st udy pr ot ocol, a w ebsit e and sear chable dat abase of published r esear ch, proj ect s and cont act s in England w as est ablished in or der t o pr om ot e shar ed lear ning and aid furt her dissem inat ion of r esear ch.
1 .6 St r u ct u r e of t h e r e por t
Pr ior t o pr esent ing r esult s fr om bot h phases of t he st udy, a backgr ound chapt er gives a brief ov erv iew of relev ant t hem es in public healt h policy and pr act ice. I n t he follow ing sect ions, each elem ent of t he st udy is r epor t ed separat ely w it h a full descript ion of r esear ch m et hods, sam pling and analysis follow ed by present at ion of t he r esult s. The lit erat ure review is report ed in sect ions 3- 6; ex pert hearings in sect ions 7 & 8 and t hen a brief sect ion descr ibing liaison w it h pr act ice. Sect ion 10 prov ides a full discussion about t he result s from Phase 1 w it h som e crit ique of t he lim it at ions of t he scoping st udy and t he em er ging t hem es. Sect ions 11- 14 pr esent t he m et hods and r esult s fr om t he case st udies undert ak en in Phase 2. Sect ion 15 cont ains a descr ipt ion and evaluat ion of t he pr ocesses of public
2 Backgr ound
Any inv est igat ion of t he lay roles r equires som e considerat ion of t he w ider public healt h funct ion in or der t o under st and how a lay w or kfor ce fit s w it hin cur r ent pr act ice. This sect ion t her efore pr ovides a br ief over view of t he public healt h syst em , w or kfor ce st ruct ur es and key set t ings. An ident ified need t o address capacit y issues in public healt h in or der t o achieve healt h t ar get s ( Depar t m ent of Healt h, 2005a) has been accom panied by a st r ong gover nm ent al dr ive t o encour age and suppor t volunt eer ing w it hin a br oader not ion of cit izenship ( Blunket t , 2003; Secr et ar y of St at e for Com m unit ies and Local Governm ent , 2008) . The sect ion goes on t o highlight r elev ant r esear ch on t he cont r ibut ion of v olunt eering, w here issues relat e t o lay inv olv em ent in public healt h.
2 .1 Th e pu blic h e a lt h sy st e m
There is w ide accept ance of t he m ult i- disciplinary nat ure of public healt h pr act ice, t her e ar e, how ever , challenges in t erm s of achieving clar it y over t he diver sit y of r oles in pr act ice ( Abbot t et al., 2005) . A prelim inar y scoping st udy conduct ed for t he SDO public healt h pr ogr am m e w as used as a
fr am ew or k for under st anding t he role of com m unit ies and lay people w it hin t he cur r ent public healt h syst em ( Hunt er , 2007) . Hunt er point s t o t he lack of a unify ing set of v alues in public healt h and confusion about w ho is included in t he public healt h w ork force. Any st udy of lay roles, t herefore, needs t o t ake account of t he cont ext for public healt h pr act ice w her e shift ing definit ions and r ealignm ent of pr ofessional r oles, boundar ies and or ganisat ional st r uct ures ar e t he nor m . Hunt er ( 2007) goes on t o ar gue t hat t he not ion of a public healt h syst em com posed of differ ent facet s and
r esour ces, developed init ially by t he US I nst it ut e of Medicine, pr ovides a useful concept ual m odel.
The not ion of a m ult i- sect oral public healt h syst em , draw ing in different r esour ces and sk ills, is one t hat has r esonance w it h ar gum ent s for gr eat er com m unit y and lay engagem ent in healt h ( Rifkin et al., 2000; Wor ld Healt h Or ganizat ion, 2002) . The significance of com m unit ies as agent s w it hin t he public healt h syst em has been em phasised in all t he m aj or public healt h policy docum ent s fr om Saving Lives: Our Healt hier Nat ion onw ar ds
com m unit ies and local ser vices t hrough use of lay healt h w or ker s is not ed. Local gov ernm ent policy in England has pr om ot ed gr eat er com m unit y em pow er m ent , w it h an em phasis on incr eased com m unit y capacit y and indiv idual learning, in order t o build st ronger, m ore cohesiv e com m unit ies and bet t er qualit y ser vices ( Com m unit ies and Local Gover nm ent , 2007; HM Gover nm ent , 2008; Secr et ar y of St at e for Com m unit ies and Local
Gover nm ent , 2008) . Local aut hor it ies, as w ell as having dir ect
responsibilit ies for public healt h, hav e a role in support ing com m unit y part icipat ion as a w ay of im prov ing serv ices and neighbourhoods.
Com m only t here is a dist inct ion m ade bet w een com m unit ies of place and ident it y, alt hough bot h can be seen as int er dependent ( Cam pbell et al., 2008) . I n t he cont ext of t his st udy, t her e is also an im por t ant dist inct ion t o be m ade bet w een lay people w it hin com m unit ies, w hose part icipat ion m ay fluct uat e acr oss a r ange fr om com m unit y leader ship t o non- par t icipat ion ( Taylor , 2003) and com m unit y organisat ions and gr oups. The Volunt ar y and Com m unit y Sect or ( VCS) has a significant place in t he public healt h sy st em and a key role in pr om ot ing access and br idging t he gap bet w een st at ut or y ser vices and com m unit ies ( HM Tr easur y, 2002) but t he balance of
lay-pr ofessional int er est s, paid and unpaid st aff, w ill var y bet ween or ganisat ions ( Hogg, 1999) .
2 .2 Pu blic h e a lt h w or k for ce
Given t he nat ur e of public healt h pr act ice, t her e ar e quest ions about how t he lay cont r ibut ion com plem ent s a w or kfor ce locat ed acr oss var ious st at ut or y and non- st at ut or y or ganisat ions. The Chief Medical Officer ’s Pr oj ect t o St r engt hen t he Public Healt h Funct ion ( Depar t m ent of Healt h, 2001b) pr oposed a t r ipar t it e division of t he public healt h w or kfor ce:
People w it h a role in public healt h in addit ion t o t heir m ainst ream w or k, for exam ple, t eacher s or housing officer s
Public healt h pract it ioners w hose role is focused on public healt h w or king w it h gr oups, com m unit ies and individuals, for exam ple, healt h visit or s or com m unit y developm ent w or ker s
Public healt h consult ant s and specialist s w or king at a st r at egic lev el, m anaging public healt h program m es.
( see Table 2) . Levels 1 and 2 include exam ples of volunt eer r oles as w ell as public healt h roles carried out w it hin unsk illed or sem i sk illed w ork . The Nat ional Occupat ional St andar ds for Com m unit y Developm ent ( Paulo, 2002) offer an alt er nat ive skills based fr am ew or k for com m unit y w or k3.
Ta ble 2 . Pu blic H e a lt h Sk ills a n d Ca r e e r Fr a m e w or k Le v e ls 1 - 3
Le v e l Ex a m ple s
Lev el 1 Has lit t le prev ious k now ledge, sk ills or ex perience in public healt h. May under t ake specific public healt h act ivit ies under dir ect ion.
Volunt eer w or ker s – e.g. br east feeding
Lev el 2 Has gained basic lev el public healt h know ledge t hr ough t r aining and/ or developm ent .
May under t ake a r ange of public healt h act ivit ies under guidance.
Peer educat or , lay healt h w or ker .
Classr oom assist ant , r efuse w orker . Level 3 May car r y out a r ange of public
healt h act ivit ies under super vision. May assist in t r aining ot her s and could have r esponsibilit y for r esour ces used by ot her s.
Com m unit y food w or ker, healt h t r ainer , dog w ar den, st op sm oking advisor .
( Sour ce: Public Healt h Resour ce Unit and Skills for Healt h, 2008: 9 & 75)
The Public Healt h Skills and Car eer Fr am ew or k is built on t he concept of career progression, w it h accum ulat ion of know ledge and skills t hrough t he different lev els. There is policy support for t he not ion of a sk ills escalat or, w her eby individuals w it hout pr ofessional t r aining can ent er t he healt h w or kfor ce at differ ent point s and go on t o develop a healt h car eer ( Depar t m ent of Healt h, Undat ed) . The Royal Societ y of Public Healt h pr ovide healt h im pr ovem ent cour ses for Levels 1 and 2 t hat fit w it hin a qualificat ion pat hw ay ( Royal Societ y for Public Healt h, 2009) .4
2 .3 H e a lt h Tr a in e r s
One m aj or dev elopm ent in public healt h pr act ice has been t he em er gence of Healt h Tr ainer s, a new cadr e of public healt h w or ker ( Depar t m ent of Healt h, 2004) . The pr im ar y r ole of Healt h Tr ainer s is t o pr ovide per sonal suppor t t o help people m ak e and m aint ain healt hy lifest y le choices. The original
concept w as based on lay people w it h local k now ledge prom ot ing healt h,
3
At t he t im e of t he st udy t he Nat ional Occupat ional St andar ds for Com m unit y
Developm ent w er e being r evised and a consult at ion on t he st andar ds w as t aking place.
4 Level 1- RSPH Healt h aw ar eness
[image:24.595.115.510.157.395.2]signalling a shift fr om ‘advice fr om on high t o suppor t fr om next door ’ ( Depar t m ent of Healt h, 2004: 106) . The healt h t r ainer pr ogr am m e,
int r oduced fir st t hr ough ear ly adopt er sit es, t hen t hr ough Spear head PCTs, w as seen as bot h a m echanism for addressing healt h inequalit ies and as a solut ion t o t he pr oblem of capacit y in public healt h as t he progr am m e w as int ended t o draw in unem ploy ed or unqualified indiv iduals int o t he public healt h w or kfor ce ( Depart m ent of Healt h, 2005a) . I n 2008, t he Depar t m ent of Healt h announced t hat Healt h Trainer s w ould be com plem ent ed by a ‘net w ork of healt h cham pions’ who w ould help incr ease upt ake in differ ent com m unit ies ( Depar t m ent of Healt h, 2008a: 68) .
Alt hough out side t he scope of t his st udy, t he int r oduct ion of Healt h Trainer s has undoubt edly st im ulat ed int erest in t he v alue of lay healt h w ork ers. Visr am and Dr inkw at er ( 2005) asser t t hat w hile Healt h Tr ainer s ar e a new init iat iv e, t here is a body of ev idence around t he effect iv eness of sim ilar r oles such as peer educat or s, lay healt h advisor s and bilingual advocat es. An evaluat ion of an early adopt er schem e found t hat Healt h Tr ainer s w er e able t o pr ovide a br idging r ole bet w een ser vices and com m unit ies, and br ought qualit ies as non- professionals, able t o offer em pat hy and support t o people in t heir ow n or sim ilar com m unit ies ( Sout h et al., 2007) .
Healt h Trainers operat e at Lev el 3 of t he Public Healt h Sk ills and Career Fr am ew or k ( Table 2) and t her e is an accr edit ed t r aining schem e ( Cit y & Guilds, 2007) . Wilkinson et al. ( 2007) in t heir r eview of healt h t r ainer act ivit y in 2005, not ed t he consider able diver sit y in t he developm ent and m anagem ent of schem es r anging fr om volunt eer based progr am m es t hr ough t o t he int egr at ion of healt h t r ainer r oles w it hin an exist ing w or kfor ce, alt hough t he m ost com m on m odel w as t he use of a single em ploym ent st ruct ur e w it h paid w or ker s. There is som e evidence t hat Healt h Trainers are being successfully r ecr uit ed fr om t ar get com m unit ies ( Sm it h et al., 2008) .
2 .4 La y r ole s in pr im a r y ca r e
m anagem ent , t r aining and suppor t for com m unit y healt h w or ker s and t he im por t ance of pr ogr am m es being ‘dr iven, ow ned by and fir m ly em bedded in com m unit ies t hem selv es’ ( Wor ld Healt h Or ganizat ion, 2007: 9) .
Com m unit y healt h w or ker pr ogr am m es have ev ident ly not t aken r oot in t he UK healt h syst em , w here pr im ar y car e is pr edom inat ely based on a m edical r at her t han social m odel of healt h, w it h less em phasis on public healt h funct ions ( Busby et al., 1999; Peckham and Exw or t hy, 2003) . Ther e is som e evidence of t he use of linkw or ker s t o br idge t he gap bet w een com m unit ies and pr im ar y car e ser vices, t ypically w or king w it h m inor it y et hnic
com m unit ies ( Gillam and Levenson, 1999) .
The int r oduct ion of t he Exper t Pat ient Pr ogr am m e in 2001, as par t of t he pat ient and public involvem ent r efor m s, w as undoubt edly a significant developm ent w it hin pr im ary car e ( Depar t m ent of Healt h, 2001a; Secr et ar y of St at e for Healt h, 2000) . The Exper t Pat ient Pr ogr am m e ( EPP) w as based on t he not ion of lay t ut or s deliv er ing a st ruct ured t r aining cour se ar ound self m anagem ent t o people w it h long t erm condit ions t hrough prim ary care or ganisat ions. Kennedy et al. ( 2005) ar gue t hat t he EPP has a public healt h dim ension because it t akes a st r at egic appr oach t o int egr at ing self care suppor t in t he NHS, aim s t o br oaden t he NHS w or kfor ce and fur t her m or e ‘can been seen as an at t em pt by t he w elfare st at e t o bridge t he gap bet w een differ ent m odels of deliv ering inform al and pr ofessional healt h car e.’ ( p.432) . Despit e high level suppor t for t he pr ogr am m e, t he early r esult s fr om t he nat ional evaluat ion indicat ed t hat aspect s of
im plem ent at ion w er e pr oblem at ic, and t he pr ogr am m e st r uggled t o r ecr uit t ut or s fr om cer t ain disadvant aged gr oups.
Ov erall part icipat ory approaches w it hin prim ary care in England are under developed and t her e ar e r ecognised challenges t o changing
m ainst r eam pr act ice and incor por at ing a public healt h per spect ive ( Busby et al., 1999; Peckham et al., 1998) . The cont ext , t her efor e, for t he
dev elopm ent of a lay w ork force deliv er ing on t he public healt h agenda r em ains ver y differ ent from m any int ernat ional cont ext s w here prevent ion and pr im ar y car e ar e m or e oft en linked t o com m unit y act ion.
2 .5 V olu n t e e r in g
I n t er m s of definit ions of v olunt eering, t he pot ent ial difficult y of dist inguishing v olunt eering from ot her social act ions is apparent . The Com m ission for t he Com pact ( 2005: 4) , t he nat ional code bet w een t he volunt ar y sect or and gover nm ent defines volunt eer ing as:
“ an act ivit y t hat involves spending t im e, unpaid, doing som et hing t hat aim s t o benefit t he envir onm ent or individuals or gr oups ot her t han ( or in
addit ion t o) close r elat ives.”
Wilson ( 2000: 215) , in a r eview of volunt eer ing, descr ibes it as ‘par t of a clust er of helping behaviour s, ent ailing m or e com m it m ent t han spont aneous assist ance but nar r ow er in scope t han t he car e pr ovided t o fam ily and friends’. He dist inguishes bet w een volunt eering, w here a public good is being produced, and part icipat ion w it hin a v olunt ary organisat ion, w hich ent ails t he consum pt ion of t hat public good. The ex t ent t o w hich
volunt eer ing is defined by t he lack of r em uner at ion is debat able; w hile t he Com pact pr ovides an unequivocal st at em ent on volunt eer ing as unpaid act ivit y ( The Com m ission for t he Com pact , 2005) , a st udy of volunt ary act ivit y in a depr iv ed com m unit y, found t hat t her e w as a blur r ing of boundar ies bet w een paid and unpaid w or k ( Hardill, 2006) .
Resear ch indicat es t hat t her e ar e a r ange of explanat ions for volunt eer ing r elat ing t o individual m ot ivat ions, including alt ruism , r at ional choice ar ound t he cost s and benefit s, and t he influence of social cont ext , including fam ily t ies ( Wilson, 2000) . Volunt eer s t hem selves r epor t a r ange of m ot ivat ions; t he nat ional sur vey ‘Helping Out ’ found t hat t he m ost com m on r eason for v olunt eering w as t o help people ( 53% ) and only 7% indicat ed t hat it w as t o help t heir car eer ( Low et al., 2008) . Br ooks ( 2002) found t hat t her e w er e t hr ee m ain st ances r elat ing t o ‘keeping busy ’, ‘doing your dut y’ and ‘a per sonal t urning point ’.
The Com m ission for t he Com pact ( 2005) descr ibes volunt eer ing exist ing w it hin a spect rum of involv em ent w here people m ay part icipat e in
volunt eer ing in differ ent w ays and at differ ent st ages of t heir lives. Low et al. ( 2008) found t hat 59% of r espondent s w er e involved in for m al
volunt eer ing over t he past 12 m ont hs, w it h 39% r egular ly volunt eer ing. I n gener al, w om en w er e m or e likely t o volunt eer t han m en, and in
or ganisat ions associat ed w it h healt h or disabilit y ( 26% com par ed w it h 17% ) , but t he t r end w as r ever sed for spor t and exer cise ( 16% com pared t o 30% ) . Just under a quart er ( 23% ) of t hose volunt eer ing did so t hr ough t he public sect or or ganisat ions. Haw kins and Rest all ( 2006) ident ify 101
I m prov ing t he v olunt eer ex perience and encouraging w ider part icipat ion in volunt eer ing ar e concerns highlight ed in a num ber of docum ent s
( Depar t m ent of Healt h, 2008b; Gaskin, 2003; Haw kins and Rest all, 2006) . Ther e ar e recognised barr ier s t o par t icipat ion, for exam ple, r esear ch car r ied out w it h five gr oups under r epr esent ed in volunt eering ( young people, older people, disabled, Black and Minor it y Et hnic gr oups ( BME) and unem ployed) found t hat t he m ain barriers w ere relat ed t o t he im age and cult ure of volunt eer ing, and also t o pr act ical barriers and difficult ies ( Niy azi and Nat ional Cent r e of Volunt eer ing, 1996) .
The benefit s of volunt eer ing can be cat egor ised int o individual, bot h t o volunt eer s and t hose t hey assist , and societ al, in t er m s of t he im pact on or ganisat ions and com m unit ies. A recent sy st em at ic rev iew of v olunt eering in healt h provides st r ong evidence t hat t he act of volunt eer ing is beneficial ( Casiday et al., 2008) . Posit ive out com es for volunt eers included:
I m pr oved healt h and w ellbeing - self rat ed healt h st at us, life sat isfact ion and qualit y of life
Adopt ion of healt hy lifest yles
I m pr oved m ent al healt h - im pact on depr ession, st r ess and em ot ional ex haust ion
I ncr eased self est eem and self–efficacy
I ncr eased abilit y t o car r y out act ivit ies of daily living
Social out com es - im pr oved fam ily funct ioning, social suppor t and int eract ion.
The psychosocial benefit s t o volunt eer s engaged in peer suppor t w er e not ed, alt hough t he aut hor s com m ent ed t hat t he boundaries bet w een peer and client wer e not always clear . The r eview exam ined t he im pact of differ ent t ypes of volunt eer ing in healt h ( direct car e, non- dir ect car e,
educat ion, pr event ion, pat ient r epr esent at ion and self help) and found som e evidence on im pact t o ser vice user s but caut ioned t hat it w as difficult t o gener alise due t o t he diver sit y of act ivit ies r epr esent ed in t he st udies r eview ed. I n t er m s of w ider benefit s, volunt eer ing, t hr ough m ut ual aid and r ecipr ocit y, can lead t o t he st r engt hening of com m unit y net w or ks, t her eby building social capit al ( Bolt on, Undat ed) . The im pr oved dissem inat ion of inform at ion w it hin com m unit ies is significant ( Dingle and Heat h, 2001) and social suppor t m ay have great er effect on healt h and healt hcar e behaviour if it is prov ided by peers ( Cooper et al., 1999) . The cont r ibut ion of
volunt eer ing t o pr om ot ing healt h and w ellbeing and t o r eaching
m arginalised com m unit ies w as highlight ed in a r ecent Depar t m ent of Healt h consult at ion ( Depar t m ent of Healt h, 2008b) . Ov er all volunt eer ing can be seen t o be m aking a significant cont r ibut ion t o civic life and m or e
2 .6 Su m m a r y
I n sum m ar y, t his sect ion has pr ovided a r eview of m aj or t hem es r elat ing t o lay roles in public healt h. Wit hin t he cur r ent social and policy cont ext t her e is recognit ion of t he v alue of t he lay cont ribut ion w it hin t he public healt h syst em . Aspir at ions t o enhance and suppor t great er lay engagem ent are r eflect ed in t he developm ent of innovat ive healt h pr ogr am m es and in t he prom ot ion of v olunt eering as essent ial feat ure of civ ic life. Wit h t he
3 Lit er at ur e r eview m et hods
Phase 1 of t he r esear ch com pr ised a scoping st udy dr aw ing on bot h
scient ific and exper ient ial evidence t o obt ain a com pr ehensiv e pict ur e of t he m ain approaches t o lay engagem ent in public healt h roles and relev ant or ganisat ional fact or s. The lit er at ur e r eview for m ed a m aj or elem ent of t his phase and w as conduct ed pr ior t o t he exper t hear ings. The pr im ar y pur pose w as t o discover all of t he r elevant published and gr ey lit er at ur e and pr ovide a m ap of r esear ch, w it h a par t icular focus on process issues. A cr it ical analy sis of public healt h roles, including defining different dim ensions of lay , w as t hen under t aken and ser vice deliver y and or ganisat ional issues w ere scoped. This sect ion descr ibes t he m et hodological appr oach and t he
lit erat ure rev iew m et hods, w hile result s from t he m apping are present ed in t he follow ing sect ion.
3 .1 Scopin g r e v ie w m e t h odology
The lit er at ur e r eview w as conduct ed as a syst em at ic scoping r eview . Scoping review s are useful for det erm ining t he size and nat ure of t he ev idence base av ailable on relat iv ely unexplor ed t opics, and have been part icularly inform at iv e in t opic areas t hat cross t radit ional discipline
boundar ies ( Cent r e for Review s and Dissem inat ion, 2004; King et al., 2002; NHS Cent r e for Review s and Dissem inat ion, 1999) . They can be used t o ident ify gaps in t he lit er at ure and m ak e recom m endat ions for furt her
r esear ch ( Cent r e for Review s and Dissem inat ion, 2009) . I t w as agr eed fr om t he out set t hat a t r adit ional syst em at ic r eview w ould not be appr opr iat e as t he t opic area of int er est w as ver y br oad, and t he st udy w as not explor ing r igidly defined quest ions.
Syst em at ic scoping r eview s involve a com pr ehensive and syst em at ic sear ch of published and gr ey lit er at ur e, w it h at t em pt s t o locat e unpublished
st udies, and differ fr om a full syst em at ic r eview as t her e is no at t em pt t o synt hesise t he evidence. The sear ch oft en has few er r est r ict ions t han searches in a full sy st em at ic rev iew , y ielding a high v olum e of hit s. The pr ocesses for scr eening t he r esult s of t he lit erat ure search and select ing st udies ar e t he sam e as for a full syst em at ic r eview t hat is double screening and checking bet w een at least t w o r eview er s, w it h a syst em for r esolving differ ences. The pr ocess of st udy select ion is, how ever , m or e likely t o be an it erat iv e pr ocess w it h inclusion crit eria being refined as fam iliarit y w it h t he lit er at ur e incr eases. A consult at ion st age is som et im es included.
assessed against t hese cat egor ies, but det ailed dat a ext r act ion does not t ak e place. This cat egorisat ion is essent ial for producing t he final m ap of t he lit er at ur e, but also for pr agm at ic r easons as a scoping r eview has m any m or e included st udies t han a full syst em at ic rev iew . Validit y assessm ent is not under t aken beyond r ecor ding st udy design. Dat a sy nt hesis involves use of a dat abase t o explor e populat ion and over lap of cat egor ies, and t he pr oduct ion of a ‘m ap’ w hich can t ake t he form of t ables and/ or t ext and show s w her e r esear ch has been under t aken, w her e t her e ar e gaps in t he lit erat ure and w her e t here m ay be sufficient lit erat ure t o m ak e a full syst em at ic review w or t hw hile ( Ar ksey and O'Malley, 2005) .
3 .2 Lit e r a t u r e r e v ie w m e t h ods
Consist ent w it h sy st em at ic scoping r eview m et hods, t he lit er at ur e sear ch w as br oad in or der t o ensur e t hat t he full range of approaches w ere m apped. The scope of t he st udy, described in sect ion 1, prov ided a clear fr am ew or k w it h a w or king definit ion of a lay healt h w or ker. I n or der t o m eet t he st udy obj ect ives, and t o discr im inat e bet w een ot her form s of lay
engagem ent and inform al self help, lit er at ur e included in t he r eview needed t o report on public healt h program m es or int erv ent ions t hat inv olv ed lay w or ker s or volunt eer s in deliver y.
Det ailed inclusion crit er ia w ere dev eloped ( Appendix 1) . An it erat iv e appr oach was t aken t o r efining t hese crit eria, including discussion at a full st eer ing gr oup m eet ing aft er t he pilot st age of t it le and abst r act scr eening, and developm ent of diagr am s and t ables of w hat should be included and excluded fr om t he r eview. Follow ing sev eral rounds of discussion, som e uncer t aint y r em ained ov er w het her st udies of cer t ain gr oups of par t icipant s or int er vent ions should be included or excluded. I t w as decided t o classify t hese as ‘Borderline’ and, w hile not including t hem in t he r eview , pr ovide a br eakdow n of st udies included in t his cat egory .
3 .2 .1 I n clu sion cr it e r ia
Ty pe s of st u die s
St udies of any design t hat evaluat ed or pr esent ed pr im ar y dat a on t he engagem ent of lay people in public healt h roles w ere eligible for inclusion in t he scoping r eview .
Ty pe s of pa r t icipa n t s
part icipant s w ould not require or receiv e form al professional or
paraprofessional cert ificat ed or degree/ t er t iar y educat ion t o under t ake t he role. The rev iew also included st udies or ot her publicat ions of any lay - led appr oaches t o public healt h act ivit ies, such as advocacy r oles. St udies of peer educat ion in schools and st udies of children under t he age of 16 w ere excluded, as t hese have been r eview ed pr eviously ( Cuij per s, 2002;
Mellanby et al., 2000) and w er e out side t he scope of t he st udy. St udies w her e a public healt h funct ion w as per for m ed as an ext ension t o an exist ing pr ofessional r ole, for exam ple, housing officer s, w er e excluded.
Ty pe s of in t e r v e n t ion / a ct iv it y
St udies of act ivit ies defined as public healt h, healt h pr om ot ion or healt h im pr ovem ent in t he UK cont ext ( Hunt er, 2007) w er e included in t he review . I n or der t o set lim it s t o t he r eview , t he pr im ar y focus w as on int er vent ions or pr ogr am m es t hat aim ed t o r educe healt h inequalit ies or addressed t he Choosing Healt h pr ior it ies ( Depart m ent of Healt h, 2004) . These ar e:
Reducing t he num ber of people w ho sm oke
Reducing obesit y and im proving diet and nut r it ion
I ncr easing exer cise
Encouraging sensible drink ing
I m pr oving sexual healt h
I m pr oving m ent al healt h.
Papers about generic lay roles w ere also eligible for inclusion if act iv it ies w ere w it hin holist ic ( horizont al) healt h prom ot ion or public healt h
pr ogr am m es w it h explicit healt h goals ( Tones and Gr een, 2004) .
Ty pe s of ou t com e m e a su r e s
As t his w as a scoping r eview ( not a syst em at ic r eview of effect iveness) , all out com es r epor t ed w er e included. Out com es w er e cat egor ised as ser vice ( t raining/ organisat ional) , upt ake or effect iveness.
3 .2 .2 Se a r ch st r a t e gy
The lit erat ure sear ch drew on academ ic and grey lit er at ur e and w eb based r esour ces. The follow ing elect r onic dat abases w er e sear ched for
publicat ions fr om 1992 t o Novem ber 2007 ( t hese sear ch dat es w er e chosen t o prov ide a m anageable v olum e of dat a) :
MEDLI NE/ PubMED
ASSI A
CI NAHL
ERI C
LI SA
Social Ser v ices Abst r act s
Sociological Abst r act s
Worldw ide Polit ical Science Abst ract s
Psy cLI T
NHS Econom ic Ev aluat ions dat abase
The Cochr ane Libr ar y
NI CE ( HDA/ Healt hProm is dat abase)
CSA Social Sciences
Web of Science
I DOX
Key se a r ch t e r m s included: lay t r ain* or lay educat * or peer t r ain* or peer educat * or com m unit y healt h act ivist * or lay suppor t * or peer support * or link w or k* or com m unit y healt h educat or* or com m unit y healt h t r ainer * or healt h advoca* . Sear ch st r at egies w er e t ailor ed t o each dat abase. See Appendix 2 for det ails of sear ch t erm s used.
Appr opr iat e academ ic and pr act ice m ailing list s ( for ex am ple, public-healt h@j iscm ail) w er e cont act ed t o ask people t o subm it any published or unpublished r esear ch. Respondent s w er e asked t o r egist er int er est in t he st udy and a dat abase of cont act s was m aint ained. Furt her det ails about liaison w it h pr act ice and t he Regist er of I nt er est is giv en in sect ion 9.
3 .2 .3 St u dy se le ct ion
Tw o r esear cher s scr eened t it les and abst r act s r et r ieved fr om elect r onic sear ches against t he inclusion cr it er ia, aft er pilot ing t he process on a sm all num ber of recor ds. I f t her e w er e any disagr eem ent s t hat could not be r esolved by discussion t he full publicat ion w as obt ained. One researcher screened ret riev ed publicat ions against t he inclusion crit eria, using a
st andar dised for m , and decisions w er e checked by a second r esear cher . Any disagr eem ent s t hat could not be r esolved by discussion w er e t aken t o a t hir d r esear cher .
3 .2 .4 D a t a e x t r a ct ion
A dat a ext r act ion for m w as developed, based on t he st udy obj ect ives and an init ial analy sis of ex am ples of eligible paper s. The form w as pilot ed on a sm all num ber of st udies, by t w o r esear cher s w or king independent ly, t o ensur e a consist ent appr oach t o dat a ext r act ion. The dat a ext r act ion for m w as developed synchr onously w it h a Micr osoft Access dat abase and included t he follow ing fields:
Coder
Bibliographic det ails
Keyw or ds
Count ry of Origin
St udy Design
Whet her t her e is a clear definit ion of lay w or ker r ole
Descript ion of lay w orker role:
Type of pr im ar y r ole and/ or m ain act ivit y
Whet her lay per son is recr uit ed fr om t ar get group
Whet her lay person is paid
Educat ional lev el of lay person
Com m ent s on lay r ole/ char act er ist ics
I nt er vent ion appr oach ( indiv idual or com m unit y; t ar get ed or generic5)
5 Based on Visr am and Dr ink w at er ’s ( 2005) cat egor isat ion of healt h t r ainer appr oaches: t ar get ed
