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T*
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T*
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T*
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T*
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T*
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T*
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T*
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T*
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[(dre)12.8(sse)13.2(d)-364(the)-355.9(psy)14.2(cho)12.8(log)13.8(ica)11.5(l)-364.1(and)-355.8(soc)13(ia)13.8(l)-364.1(issu)13.1(es)-360.3(the)18.4(y)-369.7(f)0(a)14(ced)11.7(.)-366.3(En-)]TJ
T*
[(gli)13.7(sh)-197.8(pa)13.9(ren)12.8(ts)-198(rep)12.8(ort)13.9(ed)-193.4(tha)12.7(t)-202.8(t)0(h)15(i)0(s)-198(asp)13(ect)-190.1(was)-195.2(abs)13(ent)-188.9(fro)14(m)-198.2(mos)12.9(t)-202.8(o)0(f)]TJ
T*
[(the)12.7(ir)-215.4(int)13.7(era)11.7(cti)12.6(ons)-210.5(wit)12.8(h)-220(pro)14(fes)13(sio)14(nal)12.7(s,)-217.4(whi)13(le)-216.6(the)-211.9(Fre)13(nch)-211.8(par)12.8(ent)12.7(s)]TJ
0 -1.1174 TD
[(rep)12.8(ort)13.9(ed)-210.7(tha)12.7(t)-214.3(the)12.7(y)-214.2(wer)12(e)-215.4(giv)13.8(en)-210.7(an)-210.7(abi)12.7(lit)13.6(y)-214.2(t)0(o)-209.7(of)14.2(oad)-206.1(str)14.1(ess)-211.4(to)-209.7(the)]TJ
0 -1.1116 TD
[(tea)11.5(m)-203.9(a)0(s)-204.8(wel)11.8(l)-208.6(a)0(s)-199(t)0(o)-203.9(eac)10.5(h)-208.4(oth)19.6(er.)-202.6(The)-195.7(Ita)12.7(lia)12.6(n)-208.4(par)12.8(en)13.9(ts)-203.7(als)12.9(o)-208.4(str)14.1(ong)14(ly)]TJ
T*
[(val)12.7(ued)-188.8(the)-194.7(sup)14.2(por)14(t)-197.1(the)12.7(y)-202.7(had)-188.8(for)-193.3(eac)10.5(h)-196.9(oth)13.8(er)-199.2(and)-188.8(the)-194.7(val)12.7(ue)-193.4(of)-198(the)]TJ
0 -1.1174 TD
[(rel)12.7(ati)12.6(ons)14.2(hip)13.9(s)-271.6(wit)12.8(h)-277.6(the)-263.8(the)12.7(rap)12.9(ist)13.9(s)-277.4(tre)12.7(ati)12.6(ng)-267.1(the)12.7(ir)-267.2(chi)12.7(ldr)13.9(en.)]TJ
/F9 1 Tf
8.9663 0 0 8.9663 62.022 563.6975 Tm
(Fear)Tj
/F5 1 Tf
9.843 0 0 9.843 72 547.3132 Tm
[(Fear)-392.4(was)-396.8(discussed)-391.9(in)-394(all)-396.4(focus)-392.3(groups)-392.3(and)-390.4(varied)-394.9(from)]TJ
-1.0137 -1.1174 TD
[(extreme)-335.1(in)-324.9(a)-330.6(parent)-331.6(seeking)-332.5(for)-331.5(a)-330.6(cure)-329.2(to)-330.6(very)-328.1(low)-332.6(in)-324.9(those)]TJ
0 -1.1116 TD
[(whose)-352.9(childrens)-347.4(conditions)-352.2(was)-350.7(stable.)-346.5(Fear)-352.1(was)-350.7(linked)-347.8(to)]TJ
T*
[(concerns)-236.7(over)-235.9(the)-240.7(deterioration)-237.1(of)-238.3(the)-235(condition)-236.1(and)-234.8(how)-234.6(this)]TJ
0 -1.1174 TD
[(may)-218.8(impact)-223.5(on)-215.3(their)-220(transition)-219.8(into)-217.8(adulthood.)-216.4(Lack)-221(of)-221(access)]TJ
0 -1.1116 TD
[(to)-463.1(skilled)-469.8(professionals)-465.5(who)-465(understood)-467.1(the)-465.4(condition)-466.5(in-)]TJ
T*
[(creased)-254(the)-246.5(level)-250(of)-249.8(fear.)-246.2(Parental)-254.3(uncertainty)-252.1(over)-247.4(the)-252.3(future)]TJ
0 -1.1174 TD
[(was)-437.1(evide)-8(nt)-434.3(and)-436.4(the)-442.3(realization)-443.5(that)-437.8(professionals)-442.5(did)-435.4(not)]TJ
0 -1.1116 TD
[(have)-358.1(all)-356.1(the)-355.9(answers.)-359.5(They)-358.1(expressed)-358.6(the)-355.9(value)-359.3(of)-353.5(meeting)]TJ
T*
[(and)-442.2(sharing)-446.5(their)-438.9(fears)-445.3(together)-443.3(during)-444.4(the)-442.3(camp,)-443.4(thereby)]TJ
0 -1.1174 TD
[(breaking)-281.9(their)-283.4(sense)-283.9(of)-278.6(isolation.)]TJ
/F9 1 Tf
8.9663 0 0 8.9663 62.022 414.5385 Tm
(Independence)Tj
/F1 1 Tf
1.1128 -1.6123 TD
(Self-efcacy.)Tj
/F5 1 Tf
9.843 0 0 9.843 132.2078 400.0818 Tm
[(Parents)-551.2(did)-550.6(not)-550.6(see)-552.6(themselves)-551.3(as)-550.3(self-)]TJ
-7.1305 -1.1116 TD
[(efcacious,)-266.5(despite)-263.5(the)-258(evide)-8(nce)-259.1(that)-259.3(they)-264.9(were)-261(often)-266(able)-260.3(to)]TJ
0 -1.1174 TD
[(solve)-311.9(complex)-310.9(problems)-310.6(and)-309.7(adapt)-307.5(treatment.)-312.2(They)-312(saw)-310.4(the)]TJ
0 -1.1116 TD
[(importance)-298.2(of)-295.9(their)-300.6(child)-294.9(taking)-296(on)-295.9(treatment)-303(and)-292.5(becoming)]TJ
T*
[(independent)-223.2(and)-217.6(able)-220(to)-215.4(use)-217.4(effective)-222.1(problem)-223.3(solving.)-218.6(There)]TJ
0 -1.1174 TD
[(was)-425.6(evidence)-422.5(for)-423.7(some)-421.3(that)-420.5(succes)-9.7(s)-421.4(with)-420.2(treatment)-423.9(was)-425.6(a)]TJ
0 -1.1116 TD
[(motivating)-371(factor.)-375.3(The)-368.5(search)-372.7(for)-371.9(cure)-369.6(or)-370.8(complete)-376.7(control)]TJ
T*
[(also)-305(motivated)-307.6(some)-306.1(parents)-309.4(to)-301.8(search)-309.4(for)-302.7(doctors)-308.3(who)-303.7(they)]TJ
0 -1.1174 TD
[(believed)-283.3(could)-283.3(eradicate)-286.7(the)-281.1(lymphedema)-287.8(despite)-280.8(being)-283.3(told)]TJ
0 -1.1116 TD
[(evidence)-272.8(to)-267.3(the)-269.5(contrary.)-268.1(Novel)-272.6(treatments)-269.3(such)-270.3(as)-268.1(diets)-265.9(that)]TJ
T*
[(were)-243.7(not)-245.3(recommended)-249.6(by)-238.3(professionals)-246.7(were)-249.5(also)-241.6(discussed)]TJ
0 -1.1174 TD
[(by)-278.7(some.)]TJ
/F1 1 Tf
8.9663 0 0 8.9663 72 256.3653 Tm
(Acceptance.)Tj
/F5 1 Tf
9.843 0 0 9.843 130.1669 256.3653 Tm
[(Parental)-409.8(acceptance)-410.9(of)-405.3(their)-404.3(childs)-412.1(situa-)]TJ
-6.9232 -1.1174 TD
[(tion)-275.4(was)-275.8(complex)-276.3(and)-275.2(inuenced)-278.3(by)-272.9(where)-273.6(they)-276.4(were)-278.3(on)-272.9(the)]TJ
0 -1.1116 TD
[(illness)-360.2(journey)-360.3(and)-361.6(the)-361.7(array)-359.1(of)-359.3(other)-358.1(medical)-364(and)-361.6(psycho-)]TJ
T*
[(social)-360.3(issues)-352.9(they)-357(faced.)-358(Their)-353.5(judgment)-357.1(about)-358.1(the)-350.2(level)-359.4(of)]TJ
0 -1.1174 TD
[(stability)-391.7(of)-382.3(the)-390.5(swelling)-391.2(inuenced)-387.8(their)-387(acceptance)-393.7(of)-388.1(the)]TJ
0 -1.1116 TD
[(situation,)-348.9(but)-343.3(was)-345(often)-346.6(found)-345.3(after)-347.7(many)-346.6(years)-347.4(of)-347.7(struggle)]TJ
T*
[(and)-280.9(adjustment.)]TJ
/F1 1 Tf
8.9663 0 0 8.9663 72 167.4141 Tm
(Friendships.)Tj
/F5 1 Tf
9.843 0 0 9.843 129.5999 167.4141 Tm
[(Parents)-338.1(expressed)-335.5(a)-336.3(deep)-335(concern)-333.7(for)-331.5(their)]TJ
-6.8656 -1.1116 TD
[(child)-427.4(to)-428.5(experience)-431.6(friendships)-433.5(and)-424.9(normal)-429.6(adult)-427.4(relation-)]TJ
0 -1.1174 TD
[(ships.)-354.3(A)-347.5(number)-354.6(of)-347.7(children)-356.9(shared)-354.3(their)-352.5(experience)-356.8(of)-347.7(ad-)]TJ
0 -1.1116 TD
[(dressing)-286.1(bullying)-285.7(at)-285.7(school)-284.2(and)-280.9(the)-286.8(way)-287.6(they)-282.2(addressed)-289.4(this.)]TJ
T*
[(Building)-257.9(condence)-262.1(was)-258.6(important)-254.6(as)-256.6(was)-258.6(encouraging)-257.6(their)]TJ
T*
[(child)-283.4(to)-278.8(consider)-281.7(the)-281.1(positive)-286.6(aspects)-281.6(of)-284.4(life.)]TJ
/F1 1 Tf
8.9663 0 0 8.9663 72 89.4614 Tm
(Guilt.)Tj
/F5 1 Tf
9.843 0 0 9.843 101.8771 89.4614 Tm
[(Parents)-516.6(from)-518.2(all)-511.6(countries)-519.1(expressed)-519.8(guilt)-512.8(over)]TJ
-4.0491 -1.1174 TD
[(their)-317.9(childs)-314.2(condition.)-320.2(This)-316.6(was)-316.2(particularly)-322.4(painful)-314.4(if)-313.3(they)]TJ
0 -1.1116 TD
[(had)-367.3(a)-370.9(genetic)-368.6(form,)-371.9(but)-366.3(was)-368(also)-368.4(evide)-8(nt)-365.2(in)-365.2(those)-369.5(without.)]TJ
T*
[(Mothers)-338(expressed)-341.3(concern)-333.7(that)-339.9(they)-334(may)-334(have)-335(unwittingly)]TJ
25.504 67.9242 TD
[(caused)-234.5(this)-223.3(during)-225.6(pregnancy.)-229.9(Fathers)-228.6(talked)-228.1(of)-226.8(the)-223.5(guilt)-230.5(they)]TJ
0 -1.1174 TD
[(felt)-489.6(of)-486(their)-485(children)-489.4(being)-484.9(unable)-487.1(to)-486.1(fully)-483.8(participate)-489.5(in)]TJ
0 -1.1116 TD
[(childhood)-299.3(activities.)-306.4(Parental)-300.4(guilt)-299.6(was)-298.9(pronounced)-301.3(in)-296.1(those)]TJ
T*
[(whose)-352.9(children)-351.2(were)-347.4(bullied)-349.1(at)-349.1(school)-347.5(and)-350(in)-347.9(children)-351.2(who)]TJ
T*
[(struggled)-287.6(to)-278.8(manage)-282(with)-282(their)-283.4(lymphedema.)]TJ
/F3 1 Tf
8.9663 0 0 8.9663 313.0582 653.8392 Tm
(Discussion)Tj
/F5 1 Tf
9.843 0 0 9.843 323.0361 637.3983 Tm
[(The)-310.9(aim)-311.1(of)-313.2(this)-309.7(study)-310.7(was)-316.2(to)-307.6(explore)-315.4(the)-309.9(parental)-312(experi-)]TJ
-1.0137 -1.1116 TD
[(ence)-388(of)-382.3(caring)-383.4(for)-383.4(a)-382.4(child)-387.1(with)-379.9(lymphedema)-385.7(and)-384.6(the)-384.7(daily)]TJ
0 -1.1174 TD
[(challenges)-459.2(of)-445.7(self-management.)-460.2(Analysis)-448.5(of)-451.4(the)-448.1(data)-456.1(pro-)]TJ
0 -1.1116 TD
[(duced)-555(four)-551.5(superordinate)-553.5(themes;)-552.7(the)-551.8(journey,)-553.8(treatment)]TJ
T*
[(mana)-8(gement,)-457.2(independen)-8.9(ce,)-457.2(and)-465.2(psychosocial)-460.1(impact.)-463.1(An)]TJ
0 -1.1174 TD
[(additional)-918.1(10)-912.2(subthemes)-917.5(were)-911.8(identied:)-918(bandaging/)]TJ
0 -1.1116 TD
[(compression)-9.6(,)-389.3(professional)-395.5(support,)-396.9(holistic)-390.4(care,)-397.2(fear,)-396(self-)]TJ
T*
[(efcacy,)-286.3(acceptance,)-287.7(friendship,)-286.3(guilt,)-280(distress,)-283.8(and)-280.9(hope.)]TJ
1.0137 -1.1116 TD
[(The)-310.9(difculties)-319.8(of)-307.4(the)-315.6(journey)-308.5(to)-313.3(diagnosis)-310.5(and)-315.5(treatment)]TJ
-1.0137 -1.1174 TD
[(were)-387.7(very)-385.7(evident)-390.4(in)-382.5(this)-384.6(study)-385.6(and)-384.6(have)-386.9(been)-386.9(reported)-385.6(in)]TJ
0 -1.1116 TD
[(children)-287.8(with)-287.8(lymphedema)-287.8(in)-284.6(the)-281.1(United)-285.4(Kingdom)-286.4(a)-284.5(decade)]TJ
T*
(ago.)Tj
7.3823 0 0 6.5614 329.7826 521.2345 Tm
(3)Tj
9.843 0 0 9.843 335.7353 516.8691 Tm
[(Resea)-9.8(rch)-229.1(with)-230.2(children)-236(with)-230.2(cystic)-233.6(brosis)-231.9(showed)-233.1(that)]TJ
-2.3039 -1.1174 TD
[(a)-226.9(misdiagnosis)-228.5(led)-223.5(to)-227(increased)-227.6(parental)-225.6(anxiety,)-226.8(guilt,)-228.2(anger,)]TJ
0 -1.1116 TD
[(and)-286.7(mistrust)-280.7(of)-278.6(the)-281.1(medical)-283.4(profession.)]TJ
7.3823 0 0 6.5614 468.0566 499.2944 Tm
(13)Tj
9.843 0 0 9.843 323.0361 483.9873 Tm
[(This)-282(study)-281.9(indicated)-284.5(that)-282.3(the)-281.1(lack)-283.3(of)-284.4(dedicated)-285.5(lymphede-)]TJ
-1.0137 -1.1174 TD
[(ma)-298.3(services)-300(and)-298.2(poor)-292.4(evidence)-301.6(base)-294.5(for)-297(treatment)-297.2(are)-299.3(major)]TJ
0 -1.1116 TD
[(factors)-269.1(that)-259.3(negatively)-268.3(inuence)-265.7(the)-263.8(parent)-262.5(experience.)-268(Lack)]TJ
T*
[(of)-313.2(reliable)-317.9(information)-314.3(led)-315.6(parents)-315.2(whose)-312.6(children)-316.6(were)-312.8(not)]TJ
0 -1.1174 TD
[(treated)-230.3(in)-227(a)-226.9(dedicated)-233.7(multiprofessional)-229.8(service)-230(on)-226.8(a)-226.9(constant)]TJ
0 -1.1116 TD
[(quest)-196.7(for)-187.5(answers.)-192.5(Parents)-194.1(faced)-193.3(an)-187.7(inability)-196(to)-186.6(understand)-197.6(the)]TJ
T*
[(complex)-449.1(and)-442.2(rapidly)-446.8(evolving)-442.2(information)-446.8(that)-449.3(they)-443.4(were)]TJ
T*
[(able)-277.6(to)-273(identify)-269.5(and)-275.2(to)-273(understand)-272.4(this)-275.2(in)-273(the)-269.5(context)-275.2(of)-272.9(their)]TJ
0 -1.1174 TD
[(childs)-285.4(condition.)]TJ
1.0137 -1.1116 TD
[(Uncertainty)-414.3(was)-414.1(a)-411.2(major)-411.2(factor)-417.9(for)-412.2(all)-407.9(parents,)-416.6(but)-406.6(was)]TJ
-1.0137 -1.1116 TD
[(more)-381.1(acute)-383.5(in)-376.7(those)-375.2(searching)-381.9(for)-377.6(expert)-383.4(care.)-379.9(Uncertainty)]TJ
0 -1.1174 TD
[(about)-294.8(the)-286.8(future)-295.8(of)-290.1(their)-289.1(child)-289.2(was)-293.1(pervasive)-295.5(and)-286.7(caused)-292.1(ev-)]TJ
0 -1.1116 TD
[(ident)-225.8(emotional)-227(distress)-222.7(that)-224.7(was)-224(manifested)-228.9(during)-225.6(the)-223.5(focus)]TJ
T*
[(groups.)-309.3(The)-305.2(importance)-309.7(of)-307.4(uncertainty)-303.9(in)-307.6(managing)-306.2(chronic)]TJ
0 -1.1174 TD
[(illnes)-8(s)-507.8(has)-505.4(been)-507.8(known)-513.2(for)-504.3(many)-513.6(decades,)-510.9(Koocher)-512(and)]TJ
0 -1.1116 TD
[(OMal)-8.6(ley)]TJ
7.3823 0 0 6.5614 351.4393 323.9432 Tm
(6)Tj
9.843 0 0 9.843 358.1857 319.5779 Tm
[(underscored)-309.1(the)-309.9(importance)-315.5(of)-307.4(uncertainty)-315.5(when)]TJ
-4.5847 -1.1116 TD
[(they)-224.6(coined)-227.9(the)-223.5(phrase,)-225.3()50.8(The)-219.8(Damocles)-227.5(Syndrome,)47.8()-225.7(t)0(o)-221.2(char-)]TJ
T*
[(acterize)-302.8(the)-298.3(pervasive)-301.3(fears)-301.3(of)-295.9(illness)-302.6(recurrence,)-302.4(death,)-299.4(and)]TJ
0 -1.1174 TD
[(long-t)-6.8(erm)-282.1(consequences)-283.6(of)-284.4(treatment,)-283.4(which)-284.1(accompany)-286.5(the)]TJ
0 -1.1116 TD
[(promi)-6.8(se)-343(of)-342(life-saving)-348.6(treatment)-349.1(for)-343.1(survivors)-343.7(of)-347.8(childhood)]TJ
T*
[(cancer.)-463.9(Koocher)]TJ
7.3823 0 0 6.5614 379.7857 269.1779 Tm
(14)Tj
9.843 0 0 9.843 391.6345 264.8125 Tm
[(descri)-8.8(bes)-453.5(uncertainty)-459.5(as)-452.4()50.8(probably)-460.4(the)]TJ
-7.983 -1.1174 TD
[(greatest)-277.3(single)-272.8(psychological)-271.4(stressor)-274.4(facing)-268.2(the)-269.5(patient)-275.4(with)]TJ
0 -1.1116 TD
[(a)-474.6(life-threatening)-477.8(illness.)44.2()-467.6(Stewart)-477.5(and)-471(Mishel)]TJ
7.3823 0 0 6.5614 507.2313 247.2377 Tm
(15)Tj
9.843 0 0 9.843 519.2502 242.8724 Tm
(reported)Tj
-20.948 -1.1116 TD
[(parental)-398.4(psychological)-392.4(distress)-389.8(to)-388.2(be)-395(the)-390.5(single)-388(most)-391.5(com-)]TJ
0 -1.1174 TD
[(monly)-346.7(reported)-345.3(consequence)-351.8(of)-342(parental)-346.6(uncertainty,)-347.7(and)-344.3(it)]TJ
0 -1.1116 TD
[(has)-217.4(been)-208.3(shown)-213.5(to)-209.7(dominate)-214.2(parents)-212.6(experiences)-219.4(with)-212.9(ill)-211(and)]TJ
T*
[(disabl)-7.8(ed)-210.7(children)-213(in)-215.4(acute,)-214.1(critical,)-217.8(outpatient,)-218.9(and)-211.8(home-care)]TJ
0 -1.1174 TD
[(settin)-8(gs.)]TJ
7.3823 0 0 6.5614 345.7133 192.4724 Tm
(1620)Tj
9.843 0 0 9.843 367.5967 188.0503 Tm
[(Although)-349.8(the)-350.2(intensity)-351.2(of)-347.8(uncertainty)-350(may)-345.5(di-)]TJ
-5.5408 -1.1116 TD
[(minish)-572.4(during)-571.2(periods)-567.5(of)-566.6(relative)-577.1(stability,)-567.9(research)-571.9(has)]TJ
T*
[(shown)-409.4(that)-409(a)-405.4(subset)-410.7(of)-405.3(parents)-407.4(are)-408.8(at)-406.7(an)-406.5(increased)-411.9(risk)-407.5(of)]TJ
T*
[(devel)-8(oping)-276.3(depression)-283.8(and)-275.2(anxiety)-281(shortly)-278.4(after)-284.4(their)-277.6(childs)]TJ
0 -1.1174 TD
[(diagnosis,)-302.4(with)-299.3(a)-296(select)-298.1(subset)-301.3(continuing)-300.6(to)-296.1(exhibit)-297.3(distress)]TJ
0 -1.1116 TD
[(symptoms)-287.5(even)-277.4(after)-284.4(treatment)-285.7(is)-278.6(completed.)]TJ
7.3823 0 0 6.5614 491.8676 137.6504 Tm
(21,22)Tj
9.843 0 0 9.843 323.0361 122.3433 Tm
[(Uncertainty)-673.4(is)-664.5(heightened)-671.4(when)-668.8(the)-667(condition)-668.1(is)-664.5(an)]TJ
-1.0137 -1.1174 TD
[()45(orphan)47.7()-323.6(illness)-325.7(not)-326(belonging)-328.1(to)-324.9(one)-327(medical)-323.7(specialty)-330.4(or)]TJ
0 -1.1116 TD
[(where)-262.1(access)-258.5(to)-255.8(specialist)-262.3(care)-261.3(is)-255.6(absent,)-254.2(a)-255.7(common)-257.9(problem)]TJ
T*
[(for)-469.8(lymphedema.)-475.6(Illness)-469.5(uncertainty)-471(has)-470.8(also)-472(consistently)]TJ
0 -1.1174 TD
[(emerged)-467.4(as)-458.2(a)-463(salient)-459.5(predictor)-461.7(of)-462.9(adjustment)-464(outcomes,)]TJ
7.3823 0 0 6.5614 544.762 82.885 Tm
(15)Tj
9.843 0 0 9.843 313.0582 67.5212 Tm
[(including)-391.6(parents)-395.8(of)-388.1(children)-391.5(with)-391.4(Type)-386.9(1)-392.8(diabetes,)]TJ
7.3823 0 0 6.5614 523.9557 71.8866 Tm
(23)Tj
9.843 0 0 9.843 535.181 67.5212 Tm
(can-)Tj
-22.5665 -1.1116 TD
(cer,)Tj
7.3823 0 0 6.5614 327.6282 60.9449 Tm
(24)Tj
9.843 0 0 9.843 337.7763 56.5795 Tm
[(and)-280.9(asthma.)]TJ
7.3823 0 0 6.5614 385.2849 60.9449 Tm
(25)Tj
/F3 1 Tf
8.9663 0 0 8.9663 62.022 749.6502 Tm
(250)Tj
46.3153 0 TD
[(MOFFATT)-333.6(ET)-338.7(AL.)]TJ
ET
endstream
endobj
62 0 obj
<>stream
/GS1 gs
BT
/F9 1 Tf
8.9663 0 0 8.9663 59.7543 725.7825 Tm
0 0 0 rg
0 Tc
0 Tw
(Self-efcacy)Tj
/F5 1 Tf
9.843 0 0 9.843 69.7323 709.3416 Tm
[(Parents)-372.6(from)-368.4(all)-367.6(countries)-375.1(when)-369.3(asked)-370.5(whether)-368.1(they)-374.3(felt)]TJ
-1.0137 -1.1116 TD
[(self-efcacious)-235.1(did)-228.1(not)-222.3(see)-230.1(themselves)-228.7(in)-221.2(this)-229.1(way.)-227.6(However,)]TJ
0 -1.1174 TD
[(the)-281.1(data)-277.6(show)-275.8(a)-278.7(more)-277.5(complex)-276.3(issue.)-280.6(There)-279.7(was)-275.8(evidence)-278.5(of)]TJ
0 -1.1116 TD
[(problem)-315.5(solving)-318.8(and)-315.5(a)-313.3(belief)-314.4(that)-316.9(they)-311(could)-317.8(inuence)-317.5(their)]TJ
T*
[(childs)-331.4(illness,)-323.3(improve)-327(their)-323.7(overall)-327(wellbeing)-330.3(and)-327(nd)-319.9(so-)]TJ
0 -1.1174 TD
[(lutions)-226.8(for)-222.1(the)-229.2(daily)-225.8(treatment)-228.1(challenges)-228.8(they)-224.6(faced.)-225.5(Success)]TJ
0 -1.1116 TD
[(was)-489(celebrated)-489.4(and)-488.3(was)-483.2(a)-486.1(strong)-484.6(motivator)-485(to)-486.1(persevere.)]TJ
T*
[(Parents)-274.7(of)-272.9(adolescents)-275.8(strove)-272.6(to)-273(transfer)-270.2(self-management)-278.2(to)]TJ
T*
[(their)-243(children.)-245.2(They)-237.2(acknowledged)-243.5(that)-242(this)-240.6(was)-241.3(difcult)-240.6(and)]TJ
0 -1.1174 TD
[(often)-415.7(was)-414.1(undertaken)-417.8(inconsistently,)-418.9(especially)-419(when)-415.4(they)]TJ
0 -1.1116 TD
[(felt)-380.2(their)-375.5(child)-375.5(had)-378.8(not)-372.1(come)-376.6(to)-376.7(accept)-380(their)-375.5(condition)-374.3(and)]TJ
T*
[(when)-254.1(the)-252.3(degree)-252(of)-249.8(swelling)-252.9(inuenced)-255.3(the)-246.5(childs)-256.6(daily)-248.8(life.)]TJ
0 -1.1174 TD
[(Parents)-338.1(were)-335.9(aware)-338.1(that)-334.1(a)-330.6()45(normal)-332.7(limb)50.6()-335.1(was)-333.4(of)-336.2(great)-336.2(im-)]TJ
0 -1.1116 TD
[(portance)-386.8(for)-383.4(aesthetic)-389.1(reasons)-389.8(as)-383.3(well)-381.1(as)-389.1(the)-384.7(challenges)-384.4(of)]TJ
T*
[(obtaining)-299.5(fashionable)-297.9(shoes)-294.3(and)-292.4(clothes.)-295.8(Parents)-297.8(focused)-292(on)]TJ
0 -1.1174 TD
[(the)-338.7(need)-340.8(for)-337.3(their)-341(child)-335.2(to)-336.4(undertake)-341.8(a)-342.1(normal)-337.4(life)-339.8(and)-338.5(par-)]TJ
0 -1.1116 TD
[(ticipate)-375.7(in)-365.2(activities.)-375.5(This)-368.4(was)-368(set)-367.3(against)-373(the)-367.5(fear)-369.5(of)-370.8(com-)]TJ
T*
[(plications)-272.9(if)-273(they)-270.6(undertook)-270.4(activities)-274.1(they)-270.6(appraised)-272.5(as)-273.9(high)]TJ
0 -1.1174 TD
[(risk.)-232.4(The)-224.5(situation)-230.3(was)-229.8(exacerbated)-232.3(for)-227.9(parents)-228.8(who)-228.8(had)-229.1(been)]TJ
0 -1.1116 TD
[(rigidly)-284.5(taught)-278.7(by)-284.4(professionals.)]TJ
1.0137 -1.1116 TD
[(Achieving)-307.1(stability)-305.3(of)-301.7(the)-304.1(swelling)-310.5(and)-304(lack)-300.6(of)-307.4(complica-)]TJ
-1.0137 -1.1116 TD
[(tions)-391.5(allowed)-391.3(parents)-390.1(to)-388.2(be)-389.3(more)-386.9(relaxed)-391.4(in)-388.2(their)-387(attitudes)]TJ
0 -1.1174 TD
[(toward)-244.9(treatment.)-248.8(Deterioration)-249.5(of)-244.1(swelling)-241.4(was)-247(occurring)-242.7(in)]TJ
0 -1.1116 TD
[(a)-370.9(few)-368.2(children)-368.5(during)-369.6(the)-367.5(camp.)-368.5(This)-362.6(led)-367.5(to)-370.9(high)-367.4(levels)-366.1(of)]TJ
T*
[(parental)-294.8(anxiety)-286.8(and)-286.7(fear.)-292.3(These)-291.1(parents)-286.4(not)-291.4(only)-286.8(sought)-283(the)]TJ
0 -1.1174 TD
[(advice)-200.3(of)-192.2(the)-200.4(clinicians)-199.1(present)-194.3(but)-199.3(also)-195.6(shared)-193(the)-200.4(issues)-197.4(with)]TJ
0 -1.1116 TD
[(other)-335.1(parents.)-330.2(They)-335.1(expressed)-335.5(the)-332.9(importance)-332.7(of)-330.5(the)-332.9(shared)]TJ
T*
[(emotional)-296.1(and)-292.4(tangible)-293.8(support)-295.6(and)-292.4(solutions)-292.1(that)-293.8(other)-294.8(par-)]TJ
0 -1.1174 TD
[(ents)-184.1(could)-185.4(provide,)-185.2(many)-185.4(of)-180.7(whom)-185.1(had)-183(gone)-178.4(through)-186.4(a)-180.8(similar)]TJ
0 -1.1116 TD
[(experience.)-406.3(They)-392.7(talked)-400.9(of)-393.8(the)-396.3(importance)-401.9(of)-393.8(the)-396.3(multiple)]TJ
T*
[(levels)-268.2(of)-267.1(knowledge)-266.7(and)-263.7(support)-266.8(available)-268.4(through)-267(the)-263.8(camp)]TJ
T*
[(and)-280.9(breaking)-287.7(the)-281.1(cycle)-279.8(of)-284.4(isolation.)]TJ
1.0137 -1.1174 TD
[(Research)-331.1(has)-326.8(shown)-328.7(that)-328.4(positive)-327(outcomes)-334.9(act)-328.3(as)-325.7(incen-)]TJ
-1.0137 -1.1116 TD
[(tives)-346.6(and)-338.5(drive)-346.6(adherence)-344(to)-342.1(treatment,)-346.7(while)-341.9(negative)-346.6(out-)]TJ
T*
[(comes)-198.9(act)-190.1(as)-193.2(disincentives.)-199.9(The)-190(belief)-199.2(people)-193.4(have)-191(about)-196.9(their)]TJ
0 -1.1174 TD
[(self-efcacy)-306.7(also)-305(inuence)-306(whether)-299(they)-305.2(think)-299.5(erratically)-305.2(or)]TJ
0 -1.1116 TD
[(strategically)-537.8(and)-528.6(optimistically)-532.3(or)-532.1(pessimistically.)]TJ
7.3823 0 0 6.5614 267.0802 319.181 Tm
(26)Tj
9.843 0 0 9.843 279.7227 314.8157 Tm
(Self-)Tj
-22.3477 -1.1116 TD
[(efcacy)-305.9(has)-303.8(been)-300.5(shown)-305.7(to)-301.8(be)-302.9(an)-297.1(important)-306.4(predictor)-306.2(of)-295.9(the)]TJ
0 -1.1174 TD
[(following:)-300.4(how)-303.7(much)-294.8(effort)-301.5(and)-298.2(commitment)-305.4(they)-299.4(will)-299.4(give)]TJ
0 -1.1116 TD
[(to)-296.1(a)-296(task;)-294.7(the)-298.3(degree)-298(of)-290.2(tenacity)-300.7(in)-296.1(the)-292.6(face)-295.8(of)-295.9(obstacles;)-296.7(the)]TJ
T*
[(quality)-354.8(of)-347.7(their)-352.5(emotional)-347.9(life;)-352.6(the)-350.2(degree)-349.9(of)-353.5(stress)-347.1(and)-350(de-)]TJ
0 -1.1174 TD
[(pression)-435.9(they)-437.7(experience)-437.4(in)-434.3(taxing)-434.2(environments;)-438.5(lifestyle)]TJ
0 -1.1116 TD
[(choices;)-248.5(and)-240.6(levels)-245.1(of)-244.1(adherence)-246.1(to)-244.2(treatment.)-243.1(Levels)-246.2(of)-244.1(self-)]TJ
T*
[(efcacy)-202.2(may)-195.8(inuence)-196.6(parental)-196.8(behaviors)-196.5(toward)-198.8(adolescents)]TJ
T*
[(with)-212.9(chronic)-211.7(illness.)-213.9(Research)-215.9(has)-205.9(shown)-213.5(that)-213.2(those)-208.2(with)-212.9(high)]TJ
0 -1.1174 TD
[(levels)-515.9(of)-509(self-efcacy)-514(show)-511.9(greater)-512.4(adherence)-511(to)-509.2(recom-)]TJ
0 -1.1116 TD
[(mendations)-199(for)-193.3(diabetes)-196.7(management.)-200.3(Improved)-195.5(self-efcacy)]TJ
T*
[(in)-319.1(children)-322.4(with)-316.6(varying)-320(degrees)-322(of)-319(congenital)-320.2(cardiac)-323.5(mal-)]TJ
0 -1.1174 TD
[(formations)-405.1(have)-404.1(been)-404.2(shown)-403.6(to)-399.7(improve)-407.6(physical)-402.9(activity,)]TJ
0 -1.1116 TD
[(which)-480(in)-474.6(turn)-476.8(mediates)-480.1(the)-476.9(attitudes)-479.1(of)-474.5(both)-476.8(parents)-476.5(and)]TJ
T*
[(cardiologists)-264.4(about)-260.2(treatment)-262.7(and)-257.9(the)-258(degree)-263.5(of)-255.6(risk)-263.5(they)-259.1(can)]TJ
0 -1.1174 TD
[(safely)-285.3(undertake.)]TJ
7.3823 0 0 6.5614 127.559 154.8283 Tm
(27)Tj
9.843 0 0 9.843 69.7323 139.4645 Tm
[(The)-218.8(expression)-220.4(of)-221(strong)-213.9(emotions)-224.4(was)-218.3(evident)-217.6(in)-221.2(all)-217.8(focus)]TJ
-1.0137 -1.1116 TD
[(groups)-472.9(with)-466.3(many)-473.3(mothers)-470.8(and)-471(fathers)-470.7(crying)-468.6(during)-467.5(the)]TJ
0 -1.1174 TD
[(discussion.)-234.2(Despite)-229.8(this,)-226.8(the)-229.2(parents)-228.8(did)-228.1(not)-222.3(wish)-229.8(the)-229.2(sessions)]TJ
0 -1.1116 TD
[(to)-186.6(stop)-188.6(describing)-191.9(them)-185.5(as)-187.5(a)-186.6(cathartic)-193.5(experience)-189.7(that)-190.1(they)-184.2(had)]TJ
T*
[(rarely)-279.7(been)-277.4(offered.)-278.3(It)-273(appeared)-278.4(to)-273(draw)-277.1(the)-275.3(parents)-274.9(together)]TJ
T*
[(in)-284.6(support)-278.3(of)-284.4(each)-278.6(other.)]TJ
1.0137 -1.1174 TD
[(Parental)-352.2(distress)-349.4(managing)-346.6(a)-347.8(child)-346.7(with)-345.4(a)-347.8(chronic)-350(illness)]TJ
-1.0137 -1.1116 TD
[(may)-305.2(lead)-300.6(to)-301.8(psychological)-306(problems)-304.9(such)-299.1(as)-302.7(depression)-301(and)]TJ
25.5097 67.2964 TD
[(anxiety.)-313.2(Research)-319.5(in)-313.3(children)-310.9(with)-316.6(learning)-316.6(disability)-312.1(found)]TJ
0 -1.1174 TD
[(that)-420.5(a)-417(signicantly)-424.6(high)-419.2(proportion)-420.2(of)-422.6(mothers)-419(\(89%\))-421.2(had)]TJ
0 -1.1116 TD
[(anxiety,)-278.7(depression,)-287.2(or)-278.6(both)-281(anxiety)-281(and)-280.9(depression)-283.8(together)]TJ
T*
[(compared)-439.7(with)-437.5(fathers)-441.9(\(77%\))-438.5(\()]TJ
/F6 1 Tf
13.2185 0 TD
(p)Tj
/F7 1 Tf
.6624 0 TD
(<)Tj
/F5 1 Tf
.72 0 TD
[(0.05\).)-437.5(Among)-439.6(mothers,)]TJ
-14.6009 -1.1116 TD
[(35%)-390.3(met)-391.7(the)-390.5(criteria)-392.8(for)-389.1(anxiety,)-393.9(40%)-390.3(for)-389.1(depression,)-396.6(and)]TJ
0 -1.1174 TD
[(13%)-344.2(for)-343.1(both)-350.1(anxiety)-344.4(and)-344.3(depression.)-350.6(Among)-347.4(fathers,)-347.4(42%)]TJ
0 -1.1116 TD
[(had)-534.4(anxie)-8(ty,)-535.7(31%)-540(depression,)-540.6(and)-534.4(3%)-538.9(both)-540.2(anxiety)-540.2(and)]TJ
T*
(depression.)Tj
7.3823 0 0 6.5614 355.4645 652.8187 Tm
(28)Tj
9.843 0 0 9.843 364.9889 648.4534 Tm
[(Post)-223(traumatic)-228.1(stress)-226.2(disorder)-223(\(PTSD\))-221.4(was)-224(seen)]TJ
-5.5005 -1.1174 TD
[(in)-382.5(a)-382.4(systematic)-390.1(review)-384.3(of)-382.3(parents)-390.1(of)-382.3(children)-385.7(with)-379.9(chronic)]TJ
0 -1.1116 TD
[(illness.)-248.5(The)-253.3(pooled)-249.8(PTSD)-253.8(prevalence)-253.1(was)-252.8(19.6%)-250.8(in)-250(mothers,)]TJ
T*
[(11.6%)-199(in)-198.2(fathers,)-197.7(and)-200.3(22.8%)-199(in)-198.2(parents)-200(in)-198.2(general)-201.4(\()]TJ
/F6 1 Tf
20.0726 0 TD
(p)Tj
/F7 1 Tf
.6681 0 TD
(<)Tj
/F5 1 Tf
.7142 0 TD
(0.001\).)Tj
-21.4549 -1.1174 TD
[(The)-287.9(prevalence)-299.2(in)-290.3(the)-292.6(healthy)-292.5(control)-291.3(group)-293.5(of)-290.1(mothers)-292.2(was)]TJ
0 -1.1116 TD
[(only)-281(4.2%)-278.5(\()]TJ
/F6 1 Tf
4.9245 0 TD
(p)Tj
/F7 1 Tf
.6681 0 TD
(<)Tj
/F5 1 Tf
.7142 0 TD
(0.001\).)Tj
7.3823 0 0 6.5614 400.8188 597.9967 Tm
(29)Tj
/F9 1 Tf
8.9663 0 0 8.9663 310.8472 570.1038 Tm
[(Study)-332.3(limitations)]TJ
/F5 1 Tf
9.843 0 0 9.843 320.8251 553.6628 Tm
[(This)-362.6(study)-362.5(has)-367.1(several)-368.2(limitations.)-369.9(It)-365.2(only)-361.6(represents)-371.3(the)]TJ
-1.0137 -1.1116 TD
[(views)-399.1(of)-405.3(the)-402(parents)-401.6(who)-401.6(agreed)-401.7(to)-399.7(take)-404.3(part)-403.1(in)-399.7(the)-402(focus)]TJ
0 -1.1174 TD
[(groups)-380.8(during)-386.8(an)-377.7(internation)-9.2(al)-377.9(educationa)-10.2(l)-381.4(camp.)-380(As)-388.8(such,)]TJ
0 -1.1116 TD
[(they)-334(may)-339.8(not)-331.7(reect)-338.3(the)-338.7(views)-335.8(of)-336.2(other)-335.1(parents)-338.2(who)-338.2(do)-336.3(not)]TJ
T*
[(access)-339.2(such)-339.4(camps)-337.2(and)-332.8(who)-338.2(may)-339.8(be)-337.4(uncomfortable)-336(sharing)]TJ
T*
[(within)-457.1(a)-463(focus)-455.7(group)-460.5(setting.)-461.8(In)-457.2(addition,)-463.1(the)-453.8(parents)-465(are)]TJ
0 -1.1174 TD
[(drawn)-255.2(from)-253.2(countries)-259.9(with)-253.2(different)-260.1(health)-251.1(care)-261.3(settings,)-255.3(and)]TJ
0 -1.1116 TD
[(the)-235(context)-234.9(of)-238.3(care)-238.2(and)-234.9(culture)-234.9(is)-238.3(likely)-238.5(to)-232.7(differ)-238.2(affecting)-238.2(the)]TJ
T*
[(overall)-471(generalizability)-479.2(of)-468.7(the)-471.1(research.)-477.4(However,)-470.2(despit)-7.8(e)]TJ
0 -1.1174 TD
[(this,)-215.3(the)-223.5(study)-218.5(shows)-219.1(many)-214.1(of)-221(the)-217.7(issues)-220.4(raised)-221.9(were)-220.7(common)]TJ
0 -1.1116 TD
[(across)-342.6(the)-350.2(groups,)-343.9(indicating)-347.9(that)-339.9(this)-344.3(is)-347.7(an)-343.2(important)-346.7(issue)]TJ
T*
[(that)-282.3(must)-282(be)-279.8(addressed.)]TJ
7.3823 0 0 6.5614 403.8235 437.4991 Tm
(30,31)Tj
/F3 1 Tf
8.9663 0 0 8.9663 310.8472 409.6062 Tm
(Conclusion)Tj
/F5 1 Tf
9.843 0 0 9.843 320.8251 393.1653 Tm
[(The)-460.7(purpose)-457.9(of)-462.9(investigating)-460.6(the)-459.6(experience)-466.2(of)-457.2(parents)]TJ
-1.0137 -1.1174 TD
[(managing)-404.2(a)-399.7(child)-398.6(with)-403(lymphedema)-403(is)-405.3(to)-399.7(give)-403.1(greater)-402.9(un-)]TJ
0 -1.1116 TD
[(derstanding)-193(of)-186.5(the)-194.7(challenges)-194.3(they)-190(face)-192.2(and)-188.8(their)-191.2(own)-194.2(sense)-191.7(of)]TJ
T*
[(self)-235.9(efcacy.)-234.5(The)-236(focus)-236.8(groups)-236.8(provided)-234.7(a)-232.6(forum)-237.1(that)-230.5(parents)]TJ
0 -1.1174 TD
[(could)-577(talk)-576(in-depth)-580.4(about)-577(the)-580.6(issues)-577.5(that)-576(enhanced)-583.7(and)]TJ
0 -1.1116 TD
[(compromised)-466.1(their)-467.7(life)-460.8(quality)-464.3(and)-465.2(impacted)-468.8(on)-463(the)-465.4(self-)]TJ
T*
[(management)-450.2(of)-445.7(their)-444.6(child.)-448.1(Moreover,)-447.4(although)-442.2(the)-448.1(focus)]TJ
0 -1.1174 TD
[(group)-270.4(conversations)-276.8(appeared)-278.4(to)-273(ow)-269(freely,)-277.4(it)-273.2(is)-272.8(not)-268.4(known)]TJ
0 -1.1116 TD
[(whether)-212.6(there)-215.3(were)-209.2(issues)-214.7(that)-213.2(parents)-211.5(might)-214.3(not)-210.8(have)-208.3(wanted)]TJ
T*
[(to)-440.1(discuss)-440.4(in)-440.1(an)-446.9(open)-437.5(discussion)-443.8(in)-440.1(front)-443.3(of)-439.9(their)-444.6(clinical)]TJ
T*
[(teams.)-381(These)-383.2(issues)-387.5(might)-381.4(have)-381.1(been)-381.1(disclosed)-386.5(in)-376.7(an)-383.5(indi-)]TJ
0 -1.1174 TD
[(vidual)-221.1(interview)-220.8(setting.)-225.6(Further)-221.9(work)-218.4(needs)-220.7(to)-221.2(be)-222.2(carried)-224.4(out)]TJ
0 -1.1116 TD
[(to)-180.9(more)-191.1(fully)-184.3(investigate)-188.7(the)-183.1(self-management)-197.6(of)-180.7(children)-189.9(and)]TJ
T*
[(adolescents)-442.9(with)-431.7(lymphedema)-443.3(and)-436.4(to)-434.3(design)-439.7(and)-436.4(evaluate)]TJ
0 -1.1174 TD
[(interventions)-218.5(that)-213.2(may)-218.8(be)-216.5(useful)-215(in)-215.4(supporting)-212.6(and)-217.6(evaluating)]TJ
0 -1.1116 TD
[(their)-283.4(needs.)]TJ
/F3 1 Tf
8.9663 0 0 8.9663 310.8472 205.2283 Tm
[(Implications)-337.5(for)-330.9(Clinical)-334.9(Practice)]TJ
/F5 1 Tf
9.843 0 0 9.843 320.8251 188.7874 Tm
[(The)-443.4(research)-450.9(has)-447.8(shown)-449.7(an)-446.9(urgent)-451.4(need)-444.5(to)-445.8(address)-453.1(the)]TJ
-1.0137 -1.1116 TD
[(following)-281.8(issues:)]TJ
/F13 1 Tf
7.9702 0 0 7.9702 320.8251 162.7086 Tm
()Tj
/F5 1 Tf
9.843 0 0 9.843 329.6692 161.4047 Tm
[(Develop)-443(multidisciplinary)-443.4(servic)-8.8(es)-435.1(for)-441(children)-443.3(in)-440.1(all)]TJ
0 -1.1174 TD
(countries)Tj
/F13 1 Tf
7.9702 0 0 7.9702 320.8251 140.7684 Tm
()Tj
/F5 1 Tf
9.843 0 0 9.843 329.6692 139.4645 Tm
[(Provide)-844(clarity)-839.8(on)-843.1(self-management)-848.4(strategies)-843.9(in)]TJ
0 -1.1116 TD
(lymphedema)Tj
/F13 1 Tf
7.9702 0 0 7.9702 320.8251 118.8283 Tm
()Tj
/F5 1 Tf
9.843 0 0 9.843 329.6692 117.5244 Tm
[(Develop)-316.3(accessible)-316.2(and)-309.7(reliable)-317.9(sources)-314.9(of)-307.4(information)]TJ
T*
[(for)-337.3(parents)]TJ
/F13 1 Tf
7.9702 0 0 7.9702 320.8251 96.9448 Tm
()Tj
/F5 1 Tf
9.843 0 0 9.843 329.6692 95.6409 Tm
[(Educate)-761.3(health)-757.9(professionals)-759.3(about)-755.6(the)-759.1(reality)-759.1(of)]TJ
T*
[(managing)-340.8(a)-330.6(child)-335.2(or)-336.2(adolescent)-338.3(with)-333.8(lymphedema)]TJ
/F13 1 Tf
7.9702 0 0 7.9702 320.8251 75.0047 Tm
()Tj
/F5 1 Tf
9.843 0 0 9.843 329.6692 73.7007 Tm
[(Develop)-443(and)-442.2(evaluate)-445.7(low)-436.3(intrusion)-442.1(self-management)]TJ
T*
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