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<>BDC BT 11 0 0 11 549.5245 486.3202 Tm 0 Tc 0 Tw ( )Tj ET EMC /P <>BDC BT 11 0 0 11 553.3447 486.3202 Tm ( )Tj ET EMC /P <>BDC BT 11 0 0 11 557.1649 486.3202 Tm ( )Tj ET EMC /P <>BDC BT 11 0 0 11 560.9851 486.3202 Tm ( )Tj ET EMC /P <>BDC BT 11 0 0 11 46.993 470.3202 Tm (well-being of adults requiring HPS.)Tj ET EMC /P <>BDC BT 11 0 0 11 215.7473 470.3202 Tm ( )Tj ET EMC /P <>BDC BT 11 0 0 11 61.1663 454.3202 Tm .01 Tc .2538 Tw [(HPS is a common treatment for patients with intestinal failure \(IF\) or intestinal insuf)18.1(ficiency)74.2(.)]TJ ET EMC /P <>BDC BT 11 0 0 11 549.5226 454.3202 Tm 0 Tc 0 Tw ( )Tj ET EMC /P <>BDC BT 11 0 0 11 555.4808 454.3202 Tm ( )Tj ET EMC /P <>BDC BT 11 0 0 11 561.4391 454.3202 Tm ( )Tj ET EMC /P <>BDC BT 11 0 0 11 567.3973 454.3202 Tm ( )Tj ET EMC /P <>BDC BT 11 0 0 11 573.3557 454.3202 Tm ( )Tj ET EMC /P <>BDC BT 11 0 0 11 579.3139 454.3202 Tm ( )Tj ET EMC /P <>BDC BT 11 0 0 11 585.2722 454.3202 Tm ( )Tj ET EMC /P <>BDC BT 11 0 0 11 591.2305 454.3202 Tm ( )Tj ET EMC /P <>BDC BT 11 0 0 11 46.993 438.3202 Tm .0691 Tw (The impact of these lifesaving treatments on psychological well-being is well documented, particularly)Tj ET EMC /P <>BDC BT 11 0 0 11 549.5218 438.3202 Tm 0 Tw ( )Tj ET EMC /P <>BDC BT 11 0 0 11 553.3379 438.3202 Tm ( )Tj ET EMC /P <>BDC BT 11 0 0 11 557.1539 438.3202 Tm ( )Tj ET EMC /P <>BDC BT 11 0 0 11 560.97 438.3202 Tm ( )Tj ET EMC /P <>BDC BT 11 0 0 11 564.786 438.3202 Tm ( )Tj ET EMC /P <>BDC BT 11 0 0 11 46.993 422.3202 Tm .01 Tc .1049 Tw (in terms of the impact on quality of life. Winkler )Tj ET EMC /P <>BDC BT /TT6 1 Tf 11 0 0 11 294.6181 422.3202 Tm (et al.)Tj ET EMC /P <>BDC BT /TT2 1 Tf 11 0 0 11 320.2794 422.3202 Tm [( \(2010\) reported that many adults dependant)]TJ ET EMC /P <>BDC BT 11 0 0 11 549.5225 422.3202 Tm 0 Tc 0 Tw ( )Tj ET EMC /P <>BDC BT 11 0 0 11 553.8422 422.3202 Tm ( )Tj ET EMC /P <>BDC BT 11 0 0 11 558.1617 422.3202 Tm ( )Tj ET EMC /P <>BDC BT 11 0 0 11 562.4814 422.3202 Tm ( )Tj ET EMC /P <>BDC BT 11 0 0 11 566.801 422.3202 Tm ( )Tj ET EMC /P <>BDC BT 11 0 0 11 571.1206 422.3202 Tm ( )Tj ET EMC /P <>BDC BT 11 0 0 11 575.4403 422.3202 Tm ( )Tj ET EMC /P <>BDC BT 11 0 0 11 579.7599 422.3202 Tm ( )Tj ET EMC /P <>BDC BT 11 0 0 11 584.0795 422.3202 Tm ( )Tj ET EMC /P <>BDC BT 11 0 0 11 588.3992 422.3202 Tm ( )Tj ET EMC /P <>BDC BT 11 0 0 11 592.7187 422.3202 Tm ( )Tj ET EMC /P <>BDC BT 11 0 0 11 46.993 406.3202 Tm .0674 Tw (on nutritional support at home maintain a good quality of life and take ownership of their nutrition in a)Tj ET EMC /P <>BDC BT 11 0 0 11 549.5219 406.3202 Tm 0 Tw ( )Tj ET EMC /P <>BDC BT 11 0 0 11 553.3193 406.3202 Tm ( )Tj ET EMC /P <>BDC BT 11 0 0 11 557.1166 406.3202 Tm ( )Tj ET EMC /P <>BDC BT 11 0 0 11 560.9138 406.3202 Tm ( )Tj ET EMC /P <>BDC BT 11 0 0 11 564.7112 406.3202 Tm ( )Tj ET EMC /P <>BDC BT 11 0 0 11 568.5084 406.3202 Tm ( )Tj ET EMC /P <>BDC BT 11 0 0 11 572.3057 406.3202 Tm ( )Tj ET EMC /P <>BDC BT 11 0 0 11 46.993 390.3202 Tm .0049 Tw [(proactive and highly successful way)74.2(. However)55.2(, dependence on nutritional support has also been shown)]TJ ET EMC /P <>BDC BT 11 0 0 11 549.5217 390.3202 Tm 0 Tw ( )Tj ET EMC /P <>BDC BT 11 0 0 11 46.993 374.3202 Tm .0147 Tw (to negatively impact psychological well-being, particularly in terms of individual relationships, autonomy)Tj ET EMC /P <>BDC BT 11 0 0 11 549.5223 374.3202 Tm 0 Tw ( )Tj ET EMC /P <>BDC BT 11 0 0 11 46.993 358.3202 Tm -.0087 Tw (and independence, body image, and self-esteem \(Heaney )Tj ET EMC /P <>BDC BT /TT6 1 Tf 11 0 0 11 331.8993 358.3202 Tm (et al.)Tj ET EMC /P <>BDC BT /TT2 1 Tf 11 0 0 11 355.6512 358.3202 Tm [( 2018\). Clinical levels of depression and)]TJ ET EMC /P <>BDC BT 11 0 0 11 549.5217 358.3202 Tm 0 Tw ( )Tj ET EMC /P <>BDC BT 11 0 0 11 552.4823 358.3202 Tm ( )Tj ET EMC /P <>BDC BT 11 0 0 11 555.4427 358.3202 Tm ( )Tj ET EMC /P <>BDC BT 11 0 0 11 558.4033 358.3202 Tm ( )Tj ET EMC /P <>BDC BT 11 0 0 11 561.3637 358.3202 Tm ( )Tj ET EMC /P <>BDC BT 11 0 0 11 564.3243 358.3202 Tm ( )Tj ET EMC /P <>BDC BT 11 0 0 11 567.2847 358.3202 Tm ( )Tj ET EMC /P <>BDC BT 11 0 0 11 46.993 342.3202 Tm -.0058 Tc -.0359 Tw (anxiety are also common, with poor social support networks and loss of employment known to exacerbate)Tj ET EMC /P <>BDC BT 11 0 0 11 549.5238 342.3202 Tm 0 Tc 0 Tw ( )Tj ET EMC /P <>BDC BT 11 0 0 11 46.993 326.3203 Tm (risk of heightened psychological distress \(Ennis )Tj ET EMC /P <>BDC BT /TT6 1 Tf 11 0 0 11 281.1674 326.3203 Tm (et al.)Tj ET EMC /P <>BDC BT /TT2 1 Tf 11 0 0 11 305.015 326.3203 Tm ( 2018\). )Tj ET EMC /P <>BDC BT 11 0 0 11 342.3173 326.3203 Tm ( )Tj ET EMC /P <>BDC BT 11 0 0 11 61.1663 310.3202 Tm -.0072 Tc -.0345 Tw (Providing key information to healthcare professionals so that they can both recognise the psychological)Tj ET EMC /P <>BDC BT 11 0 0 11 549.5205 310.3202 Tm 0 Tc 0 Tw ( )Tj ET EMC /P <>BDC BT 11 0 0 11 46.993 294.3202 Tm -.0217 Tw [(well-being of patients requiring HPS, and have suf)18.1(ficient knowledge about where to direct people to gain)]TJ ET EMC /P <>BDC BT 11 0 0 11 549.5223 294.3202 Tm 0 Tw ( )Tj ET EMC /P <>BDC BT 11 0 0 11 46.993 278.3203 Tm (appropriate psychological support is thus vital.)Tj ET EMC /P <>BDC BT 11 0 0 11 272.0043 278.3203 Tm ( )Tj ET EMC /P <>BDC BT /TT4 1 Tf 12 0 0 12 22.6771 236.2364 Tm 1 .89 0 0 k (Key points)Tj ET EMC /P <>BDC /GS2 gs BT /TT8 1 Tf 10 0 0 10 84.0189 236.2364 Tm 0 0 0 1 k ( )Tj ET EMC /P <>BDC /GS1 gs BT /TT2 1 Tf 8 0 0 8 22.6771 218.5671 Tm 0 0 0 .8 k (1.)Tj ET EMC /P <>BDC BT 8 0 0 8 34.0157 218.5671 Tm (Individuals requiring HPS can be more susceptible to social isolation.)Tj ET EMC /P <>BDC BT 8 0 0 8 278.1446 218.5671 Tm ( )Tj ET EMC /P <>BDC BT 8 0 0 8 22.6771 206.5671 Tm -.01 Tc (2.)Tj ET EMC /P <>BDC BT 8 0 0 8 34.0157 206.5671 Tm (Promoting psychologically informed self-care is vital for ensuring individual)Tj ET EMC /P <>BDC BT 8 0 0 8 291.0895 206.5671 Tm 0 Tc ( )Tj ET EMC /P <>BDC BT 8 0 0 8 24.7529 194.5671 Tm -.01 Tc ( )Tj ET EMC /P <>BDC BT 8 0 0 8 34.0157 194.5671 Tm (psychological well-being.)Tj ET EMC /P <>BDC BT 8 0 0 8 120.5089 194.5671 Tm 0 Tc ( )Tj ET EMC /P <>BDC BT 8 0 0 8 122.7316 194.5671 Tm ( )Tj ET EMC /P <>BDC BT 8 0 0 8 22.6771 182.5671 Tm (3.)Tj ET EMC /P <>BDC BT 8 0 0 8 34.0157 182.5671 Tm (Coping with the daily demands of nutritional support at home and )Tj ET EMC /P <>BDC BT 8 0 0 8 24.5131 170.5671 Tm ( )Tj ET EMC /P <>BDC BT 8 0 0 8 34.0157 170.5671 Tm (long-term physical illness can lead people to overlook other important )Tj ET EMC /P <>BDC BT 8 0 0 8 24.5131 158.5671 Tm ( )Tj ET EMC /P <>BDC BT 8 0 0 8 34.0157 158.5671 Tm (aspects of life that are not related to nutrition.)Tj ET EMC /P <>BDC BT 8 0 0 8 194.1094 158.5671 Tm ( )Tj ET EMC /P <>BDC BT 8 0 0 8 22.6771 146.5671 Tm (4.)Tj ET EMC /P <>BDC BT 8 0 0 8 34.0157 146.5671 Tm (Individuals requiring HPS should be reassured that changing emotions )Tj ET EMC /P <>BDC BT 8 0 0 8 24.5131 134.5671 Tm ( )Tj ET EMC /P <>BDC BT 8 0 0 8 34.0157 134.5671 Tm (during their journey of living with HPS are to be expected. Healthcare )Tj ET EMC /P <>BDC BT 8 0 0 8 24.5131 122.5671 Tm ( )Tj ET EMC /P <>BDC BT 8 0 0 8 34.0157 122.5671 Tm (professionals should therefore encourage individuals to speak openly )Tj ET EMC /P <>BDC BT 8 0 0 8 24.5131 110.5671 Tm ( )Tj ET EMC /P <>BDC BT 8 0 0 8 34.0157 110.5671 Tm (about their psychological wellbeing and know where to signpost people )Tj ET EMC /P <>BDC BT 8 0 0 8 24.5131 98.5671 Tm ( )Tj ET EMC /P <>BDC BT 8 0 0 8 34.0157 98.5671 Tm (to for further advice and support when needed.)Tj ET EMC /P <>BDC BT 8 0 0 8 199.9024 98.5671 Tm ( )Tj ET EMC /P <>BDC BT 8 0 0 8 22.6771 86.5671 Tm -.015 Tc (5.)Tj ET EMC /P <>BDC BT 8 0 0 8 34.0157 86.5671 Tm 0 Tc (Healthcare professionals should be equipped with knowledge about how)Tj ET EMC /P <>BDC BT 8 0 0 8 290.1876 86.5671 Tm ( )Tj ET EMC /P <>BDC BT 8 0 0 8 24.5131 74.5671 Tm ( )Tj ET EMC /P <>BDC BT 8 0 0 8 34.0157 74.5671 Tm (to refer for immediate/crisis psychological support in a mental health )Tj ET EMC /P <>BDC BT 8 0 0 8 24.5131 62.5671 Tm ( )Tj ET EMC /P <>BDC BT 8 0 0 8 34.0157 62.5671 Tm (crisis situation. )Tj ET EMC /P <>BDC BT 8 0 0 8 88.6993 62.5671 Tm ( )Tj ET EMC /P <>BDC BT /TT4 1 Tf 12 0 0 12 303.5263 236.2364 Tm 1 .89 0 0 k (Explanations)Tj ET EMC /P <>BDC BT /TT2 1 Tf 8 0 0 8 378.2099 236.2364 Tm 0 0 0 .8 k ( )Tj ET EMC /P <>BDC BT 8 0 0 8 303.5263 221.3017 Tm -.015 Tc (1.)Tj ET EMC /P <>BDC BT /TT4 1 Tf 8 0 0 8 312.7622 221.3017 Tm 0 Tc ( )Tj ET EMC /P <>BDC BT 8 0 0 8 314.865 221.3017 Tm (Encourage creative ways to connect. )Tj ET EMC /P <>BDC BT /TT2 1 Tf 8 0 0 8 457.5836 221.3017 Tm (Healthcare professionals are )Tj ET EMC /P <>BDC BT 8 0 0 8 312.6422 209.2017 Tm ( )Tj ET EMC /P <>BDC BT 8 0 0 8 314.865 209.2017 Tm (advised to encourage individuals to develop creative ways to connect )Tj ET EMC /P <>BDC BT 8 0 0 8 312.7222 197.1017 Tm ( )Tj ET EMC /P <>BDC BT 8 0 0 8 314.865 197.1017 Tm -.01 Tc (that help minimise social isolation and bolster social support. For example)Tj ET EMC /P <>BDC BT 8 0 0 8 569.8838 197.1017 Tm 0 Tc (,)Tj ET EMC /P <>BDC BT 8 0 0 8 572.1064 197.1017 Tm ( )Tj ET EMC /P <>BDC BT 8 0 0 8 312.6422 185.0017 Tm ( )Tj ET EMC /P <>BDC BT 8 0 0 8 314.865 185.0017 Tm (Skype, text messaging and video calls, as well as face to face contact. )Tj ET EMC /P <>BDC BT 8 0 0 8 312.6422 172.9016 Tm ( )Tj ET EMC /P <>BDC BT 8 0 0 8 314.865 172.9016 Tm (Social media can help people to gain reassurance, but for some this can)Tj ET EMC /P <>BDC BT 8 0 0 8 570.5718 172.9016 Tm ( )Tj ET EMC /P <>BDC BT 8 0 0 8 312.6422 160.8017 Tm ( )Tj ET EMC /P <>BDC BT 8 0 0 8 314.865 160.8017 Tm (feel unhelpful and anxiety provoking. It is thus important to remember )Tj ET EMC /P <>BDC BT 8 0 0 8 312.6422 148.7017 Tm ( )Tj ET EMC /P <>BDC BT 8 0 0 8 314.865 148.7017 Tm (that each individual is unique, and any decision to engage with social )Tj ET EMC /P <>BDC BT 8 0 0 8 312.6422 136.6017 Tm ( )Tj ET EMC /P <>BDC BT 8 0 0 8 314.865 136.6017 Tm (media is a personal preference. Encouraging participation in shared )Tj ET EMC /P <>BDC BT 8 0 0 8 312.6422 124.5016 Tm ( )Tj ET EMC /P <>BDC BT 8 0 0 8 314.865 124.5016 Tm (online activities, such as virtual book clubs, film clubs or quiz nights, )Tj ET EMC /P <>BDC BT 8 0 0 8 312.6422 112.4016 Tm ( )Tj ET EMC /P <>BDC BT 8 0 0 8 314.865 112.4016 Tm (may help individuals to increase pleasure and achievement and their )Tj ET EMC /P <>BDC BT 8 0 0 8 312.6422 100.3017 Tm ( )Tj ET EMC /P <>BDC BT 8 0 0 8 314.865 100.3017 Tm (overall mood. Patient support or advocacy groups can also be helpful )Tj ET EMC /P <>BDC BT 8 0 0 8 312.6422 88.2016 Tm ( )Tj ET EMC /P <>BDC BT 8 0 0 8 314.865 88.2016 Tm (for some patients, to connect with other patients and help to answer )Tj ET EMC /P <>BDC BT 8 0 0 8 312.6422 76.1016 Tm ( )Tj ET EMC /P <>BDC BT 8 0 0 8 314.865 76.1016 Tm (practical questions. While this type of support does not appeal to many )Tj ET EMC /P <>BDC BT 8 0 0 8 312.6422 64.0016 Tm ( )Tj ET EMC /P <>BDC BT 8 0 0 8 314.865 64.0016 Tm (patients it is best practice that patients are made aware of these groups. )Tj ET EMC /P <>BDC BT /TT4 1 Tf 9 0 0 9 22.6772 814.1643 Tm 1 .15 0 0 k [(THE BRITISH INTESTINAL)18.1( F)55.2(AILURE )37.1(ALLIANCE \(BIF)55.2(A\) T)18.1(O)0(P)18.1( TIPS )37.1(ARTICLE SERIES)]TJ ET EMC /Artifact <>BDC 0 0 0 .6 k 0 806.78 595.2 1.417 re f EMC /P <>BDC BT /TT2 1 Tf 8 0 0 8 22.6772 14.3571 Tm 0 0 0 0 k [(BIF)55.2(A)55.2( is a Specialist Interest Group of ϳԹ )]TJ ET EMC /P <>BDC BT /TT4 1 Tf 8 0 0 8 191.2006 14.3571 Tm [(www)37.1(.bapen.org.uk )]TJ ET EMC /P <>BDC BT /TT2 1 Tf 8 0 0 8 22.277 527.2451 Tm 0 0 0 .8 k [(Sarah Kelly)74.2(, Carolyn Wheatley and the BIF)55.2(A)55.2( Committee)]TJ ET EMC /P <>BDC BT 6 0 0 6 510.4381 41.029 Tm (Continued over page...)Tj ET EMC Q endstream endobj 57 0 obj <>/ExtGState<>>> endobj 66 0 obj <> endobj 124 0 obj <>stream /Figure <>BDC q 1 i -16 794.836 625.344 -936.03 re 297.6 421.08 m W* n 0 841.89 595.276 -841.89 re 297.6 421.08 m W n 0 842.04 595.2 -841.92 re W n /GS3 gs q 703.893 106.411 -81.111 536.543 11.112 -90.205 cm /Im1 Do Q EMC /P <>BDC Q q 1 i 0 841.89 595.276 -841.89 re 297.6 421.08 m W n 0 842.04 595.2 -841.92 re W n /GS1 gs BT /TT2 1 Tf 8 0 0 8 31.7931 777.0668 Tm 0 0 0 .8 k 0 Tc 0 Tw ( )Tj ET EMC /P <>BDC BT 8 0 0 8 34.0157 777.0668 Tm [(Finally)74.2(, where employment can be maintained or modified, this should )]TJ ET EMC /P <>BDC BT 8 0 0 8 31.7931 764.9668 Tm ( )Tj ET EMC /P <>BDC BT 8 0 0 8 34.0157 764.9668 Tm (be encouraged, given that for some people the introduction of HPS will )Tj ET EMC /P <>BDC BT 8 0 0 8 31.7931 752.8668 Tm ( )Tj ET EMC /P <>BDC BT 8 0 0 8 34.0157 752.8668 Tm (enable them, not necessarily restrict connectivity with life outside the )Tj ET EMC /P <>BDC BT 8 0 0 8 31.7931 740.7667 Tm ( )Tj ET EMC /P <>BDC BT 8 0 0 8 34.0157 740.7667 Tm (home environment)Tj ET EMC /P <>BDC BT 8 0 0 8 100.2736 740.7667 Tm ( )Tj ET EMC /P <>BDC BT 8 0 0 8 22.6771 723.0975 Tm (2. )Tj ET EMC /P <>BDC BT 8 0 0 8 31.7931 723.0975 Tm ( )Tj ET EMC /P <>BDC BT /TT4 1 Tf 8 0 0 8 34.0157 723.0975 Tm (Encourage self-care regimens. )Tj ET EMC /P <>BDC BT /TT2 1 Tf 8 0 0 8 152.7306 723.0975 Tm [(T)110.8(aking time to enjoy activities around )]TJ ET EMC /P <>BDC BT 8 0 0 8 31.7931 711.0975 Tm ( )Tj ET EMC /P <>BDC BT 8 0 0 8 34.0157 711.0975 Tm -.005 Tc (a nutritional support regime is vital for individual psychological well-being.)Tj ET EMC /P <>BDC BT 8 0 0 8 290.1396 711.0975 Tm 0 Tc ( )Tj ET EMC /P <>BDC BT 8 0 0 8 31.7931 699.0975 Tm ( )Tj ET EMC /P <>BDC BT 8 0 0 8 34.0157 699.0975 Tm (Thus, it is important that healthcare professionals encourage individuals )Tj ET EMC /P <>BDC BT 8 0 0 8 31.7931 687.0975 Tm ( )Tj ET EMC /P <>BDC BT 8 0 0 8 34.0157 687.0975 Tm (to engage with enjoyable activities, individual hobbies, employment and )Tj ET EMC /P <>BDC BT 8 0 0 8 31.7931 675.0975 Tm ( )Tj ET EMC /P <>BDC BT 8 0 0 8 34.0157 675.0975 Tm (interests on daily basis. Encouraging activities that help occupy time and)Tj ET EMC /P <>BDC BT 8 0 0 8 290.6017 675.0975 Tm ( )Tj ET EMC /P <>BDC BT 8 0 0 8 31.7931 663.0975 Tm ( )Tj ET EMC /P <>BDC BT 8 0 0 8 34.0157 663.0975 Tm [(give purpose and pleasure to a day are highly recommended. )55.2(Autonomy )]TJ ET EMC /P <>BDC BT 8 0 0 8 31.7931 651.0975 Tm ( )Tj ET EMC /P <>BDC BT 8 0 0 8 34.0157 651.0975 Tm (and the maintaining of independence should be promoted, along with an)Tj ET EMC /P <>BDC BT 8 0 0 8 289.7579 651.0975 Tm ( )Tj ET EMC /P <>BDC BT 8 0 0 8 31.7931 639.0975 Tm ( )Tj ET EMC /P <>BDC BT 8 0 0 8 34.0157 639.0975 Tm (understanding of the underlying medical condition and treatments.)Tj ET EMC /P <>BDC BT 8 0 0 8 310.6771 639.0975 Tm ( )Tj ET EMC /P <>BDC BT 8 0 0 8 31.7931 621.4282 Tm ( )Tj ET EMC /P <>BDC BT 8 0 0 8 34.0157 621.4282 Tm (Healthcare professionals should recognise that, for some individuals, )Tj ET EMC /P <>BDC BT 8 0 0 8 31.7931 609.4282 Tm ( )Tj ET EMC /P <>BDC BT 8 0 0 8 34.0157 609.4282 Tm (having daily routines around nutrition can be helpful and bolster )Tj ET EMC /P <>BDC BT 8 0 0 8 31.7931 597.4282 Tm ( )Tj ET EMC /P <>BDC BT 8 0 0 8 34.0157 597.4282 Tm (psychological well-being. Some common examples that may benefit )Tj ET EMC /P <>BDC BT 8 0 0 8 31.7931 585.4282 Tm ( )Tj ET EMC /P <>BDC BT 8 0 0 8 34.0157 585.4282 Tm (from discussion with individuals where appropriate include:)Tj ET EMC /P <>BDC BT 8 0 0 8 242.1212 585.4282 Tm ( )Tj ET EMC /P <>BDC BT 8 0 0 8 31.7931 567.7589 Tm ( )Tj ET EMC /P <>BDC BT 8 0 0 8 34.0157 567.7589 Tm 1 .89 0 0 k ()Tj ET EMC /P <>BDC BT 8 0 0 8 39.6851 567.7589 Tm 0 0 0 .8 k (Having regular times for waking, going to bed and getting dressed )Tj ET EMC /P <>BDC BT 8 0 0 8 31.7931 555.7589 Tm ( )Tj ET EMC /P <>BDC BT 8 0 0 8 39.6851 555.7589 Tm [(each day)74.2(. )]TJ ET EMC /P <>BDC BT 8 0 0 8 31.7931 543.7589 Tm ( )Tj ET EMC /P <>BDC BT 8 0 0 8 34.0157 543.7589 Tm 1 .89 0 0 k ()Tj ET EMC /P <>BDC BT 8 0 0 8 39.6851 543.7589 Tm 0 0 0 .8 k [(Having a regular time to take a daily walk or do physical activity)74.2(. )]TJ ET EMC /P <>BDC BT 8 0 0 8 31.7931 531.7589 Tm ( )Tj ET EMC /P <>BDC BT 8 0 0 8 34.0157 531.7589 Tm 1 .89 0 0 k ()Tj ET EMC /P <>BDC BT 8 0 0 8 39.6851 531.7589 Tm 0 0 0 .8 k (Including some relaxation time into a daily routine to help maintain )Tj ET EMC /P <>BDC BT 8 0 0 8 31.7931 519.7589 Tm ( )Tj ET EMC /P <>BDC BT 8 0 0 8 39.6851 519.7589 Tm [(mood and manage any anxieties and worry)74.2(. )]TJ ET EMC /P <>BDC BT 8 0 0 8 31.7931 507.7589 Tm ( )Tj ET EMC /P <>BDC BT 8 0 0 8 34.0157 507.7589 Tm 1 .89 0 0 k ()Tj ET EMC /P <>BDC BT 8 0 0 8 39.6851 507.7589 Tm 0 0 0 .8 k (Regular use of NHS recommended smartphone apps that promote )Tj ET EMC /P <>BDC BT 8 0 0 8 31.7931 495.7589 Tm ( )Tj ET EMC /P <>BDC BT 8 0 0 8 39.6851 495.7589 Tm (relaxation and well-being. )Tj ET EMC /P <>BDC BT 8 0 0 8 31.7931 483.7589 Tm ( )Tj ET EMC /P <>BDC BT 8 0 0 8 34.0157 483.7589 Tm 1 .89 0 0 k ()Tj ET EMC /P <>BDC BT 8 0 0 8 39.6851 483.7589 Tm 0 0 0 .8 k (Recognising that while routines are encouraged and are useful for )Tj ET EMC /P <>BDC BT 8 0 0 8 31.7931 471.7589 Tm ( )Tj ET EMC /P <>BDC BT 8 0 0 8 39.6851 471.7589 Tm (some people, the impact of HPS and long-term illness may potentially )Tj ET EMC /P <>BDC BT 8 0 0 8 31.7931 459.7589 Tm ( )Tj ET EMC /P <>BDC BT 8 0 0 8 39.6851 459.7589 Tm [(prevent routine due to managing the unexpected or new normal)37.1( of life)]TJ ET EMC /P <>BDC BT 8 0 0 8 289.3218 459.7589 Tm ( )Tj ET EMC /P <>BDC BT 8 0 0 8 31.7931 447.7589 Tm ( )Tj ET EMC /P <>BDC BT 8 0 0 8 39.6851 447.7589 Tm (on HPS i.e. disturbed sleeping patterns, frequency of visiting the )Tj ET EMC /P <>BDC BT 8 0 0 8 31.7931 435.7589 Tm ( )Tj ET EMC /P <>BDC BT 8 0 0 8 39.6851 435.7589 Tm (bathroom or needing to manage feeds and feeding equipment.)Tj ET EMC /P <>BDC BT 8 0 0 8 261.1772 435.7589 Tm ( )Tj ET EMC /P <>BDC BT 8 0 0 8 22.6771 418.0896 Tm -.015 Tc (3.)Tj ET EMC /P <>BDC BT /TT4 1 Tf 8 0 0 8 31.9131 418.0896 Tm 0 Tc ( )Tj ET EMC /P <>BDC BT 8 0 0 8 34.0157 418.0896 Tm (Nurture what is important for every individual. )Tj ET EMC /P <>BDC BT /TT2 1 Tf 8 0 0 8 211.379 418.0896 Tm (Healthcare )Tj ET EMC /P <>BDC BT 8 0 0 8 31.7931 406.0896 Tm ( )Tj ET EMC /P <>BDC BT 8 0 0 8 34.0157 406.0896 Tm (professionals should encourage individuals to keep in touch with aspects)Tj ET EMC /P <>BDC BT 8 0 0 8 291.5078 406.0896 Tm ( )Tj ET EMC /P <>BDC BT 8 0 0 8 31.7931 394.0896 Tm ( )Tj ET EMC /P <>BDC BT 8 0 0 8 34.0157 394.0896 Tm -.005 Tc [(of life, or life values)37.1( that are most important to them outside of nutritional)]TJ ET EMC /P <>BDC BT 8 0 0 8 289.7589 394.0896 Tm 0 Tc ( )Tj ET EMC /P <>BDC BT 8 0 0 8 31.7931 382.0896 Tm ( )Tj ET EMC /P <>BDC BT 8 0 0 8 34.0157 382.0896 Tm -.005 Tc (regimens \(e.g. being a good parent, friend, being spiritual, being creative,)Tj ET EMC /P <>BDC BT 8 0 0 8 290.2469 382.0896 Tm 0 Tc ( )Tj ET EMC /P <>BDC BT 8 0 0 8 31.7931 370.0896 Tm ( )Tj ET EMC /P <>BDC BT 8 0 0 8 34.0157 370.0896 Tm [(being intimate, going to work\). )18.1(This can facilitate thinking and reflection )]TJ ET EMC /P <>BDC BT 8 0 0 8 312.6422 777.0668 Tm ( )Tj ET EMC /P <>BDC BT 8 0 0 8 314.865 777.0668 Tm (about the extent to which individuals are living life according to what is )Tj ET EMC /P <>BDC BT 8 0 0 8 312.6422 765.0668 Tm ( )Tj ET EMC /P <>BDC BT 8 0 0 8 314.865 765.0668 Tm (most important to individuals outside of and beyond their HPS regimen, )Tj ET EMC /P <>BDC BT 8 0 0 8 312.6422 753.0668 Tm ( )Tj ET EMC /P <>BDC BT 8 0 0 8 314.865 753.0668 Tm (and help to develop goals, hopes and plans that will maximise overall )Tj ET EMC /P <>BDC BT 8 0 0 8 312.6422 741.0668 Tm ( )Tj ET EMC /P <>BDC BT 8 0 0 8 314.865 741.0668 Tm (psychological well-being. )Tj ET EMC /P <>BDC BT 8 0 0 8 410.0251 741.0668 Tm ( )Tj ET EMC /P <>BDC BT 8 0 0 8 303.5264 723.8175 Tm -.015 Tc (4.)Tj ET EMC /P <>BDC BT /TT4 1 Tf 8 0 0 8 312.7623 723.8175 Tm 0 Tc ( )Tj ET EMC /P <>BDC BT 8 0 0 8 314.865 723.8175 Tm (Encourage formal help seeking when needed. )Tj ET EMC /P <>BDC BT /TT2 1 Tf 8 0 0 8 490.908 723.8175 Tm (It is vital that )Tj ET EMC /P <>BDC BT 8 0 0 8 312.6422 712.2375 Tm ( )Tj ET EMC /P <>BDC BT 8 0 0 8 314.865 712.2375 Tm [(professionals refer people to their GP)18.1( in a timely manner to request )]TJ ET EMC /P <>BDC BT 8 0 0 8 312.6422 700.6575 Tm ( )Tj ET EMC /P <>BDC BT 8 0 0 8 314.865 700.6575 Tm (referral to local psychological services. Common reasons for referral )Tj ET EMC /P <>BDC BT 8 0 0 8 312.6422 689.0775 Tm ( )Tj ET EMC /P <>BDC BT 8 0 0 8 314.865 689.0775 Tm (to psychological services may include \(this is not an exhaustive list\):)Tj ET EMC /P <>BDC BT 8 0 0 8 555.4158 689.0775 Tm ( )Tj ET EMC /P <>BDC BT 8 0 0 8 312.6422 671.8282 Tm ( )Tj ET EMC /P <>BDC BT 8 0 0 8 314.865 671.8282 Tm 1 .89 0 0 k ()Tj ET EMC /P <>BDC BT 8 0 0 8 320.5342 671.8282 Tm 0 0 0 .8 k [(Feelings of anxiety)74.2(, depression, hopelessness, and anger)55.2(.)]TJ ET EMC /P <>BDC BT 8 0 0 8 525.8507 671.8282 Tm ( )Tj ET EMC /P <>BDC BT 8 0 0 8 312.6422 660.2482 Tm ( )Tj ET EMC /P <>BDC BT 8 0 0 8 314.865 660.2482 Tm 1 .89 0 0 k ()Tj ET EMC /P <>BDC BT 8 0 0 8 320.5342 660.2482 Tm 0 0 0 .8 k [(T)37.1(raumatic stress responses, specifically in relation to health care )]TJ ET EMC /P <>BDC BT 8 0 0 8 312.6422 648.6682 Tm ( )Tj ET EMC /P <>BDC BT 8 0 0 8 320.5342 648.6682 Tm (experiences.)Tj ET EMC /P <>BDC BT 8 0 0 8 365.8936 648.6682 Tm ( )Tj ET EMC /P <>BDC BT 8 0 0 8 312.6422 637.0882 Tm ( )Tj ET EMC /P <>BDC BT 8 0 0 8 314.865 637.0882 Tm 1 .89 0 0 k ()Tj ET EMC /P <>BDC BT 8 0 0 8 320.5342 637.0882 Tm 0 0 0 .8 k [(Adjustment to losses or changes relating to the body)74.2(, functioning )]TJ ET EMC /P <>BDC BT 8 0 0 8 312.6422 625.5082 Tm ( )Tj ET EMC /P <>BDC BT 8 0 0 8 320.5342 625.5082 Tm [(and/or identity)74.2(.)]TJ ET EMC /P <>BDC BT 8 0 0 8 372.417 625.5082 Tm ( )Tj ET EMC /P <>BDC BT 8 0 0 8 312.6422 613.9282 Tm ( )Tj ET EMC /P <>BDC BT 8 0 0 8 314.865 613.9282 Tm 1 .89 0 0 k ()Tj ET EMC /P <>BDC BT 8 0 0 8 320.5342 613.9282 Tm 0 0 0 .8 k (Self-management/coping with discomfort and/or fatigue related to)Tj ET EMC /P <>BDC BT 8 0 0 8 312.6422 602.3482 Tm ( )Tj ET EMC /P <>BDC BT 8 0 0 8 320.5342 602.3482 Tm [(gastrointestinal or nutritional dif)18.1(ficulties.)]TJ ET EMC /P <>BDC BT 8 0 0 8 460.0147 602.3482 Tm ( )Tj ET EMC /P <>BDC BT 8 0 0 8 312.6422 590.7682 Tm ( )Tj ET EMC /P <>BDC BT 8 0 0 8 314.865 590.7682 Tm 1 .89 0 0 k ()Tj ET EMC /P <>BDC BT 8 0 0 8 320.5342 590.7682 Tm 0 0 0 .8 k [(Dif)18.1(ficulties coping with or adhering to treatment or medical advice. )]TJ ET EMC /P <>BDC BT 8 0 0 8 557.835 590.7682 Tm ( )Tj ET EMC /P <>BDC BT 8 0 0 8 312.6422 573.0989 Tm ( )Tj ET EMC /P <>BDC BT 8 0 0 8 314.865 573.0989 Tm (Healthcare professionals should always take time to listen to the)Tj ET EMC /P <>BDC BT 8 0 0 8 312.6422 561.0989 Tm ( )Tj ET EMC /P <>BDC BT 8 0 0 8 314.865 561.0989 Tm [(individual and try to make sense of a person)18.1(s psychological distress )]TJ ET EMC /P <>BDC BT 8 0 0 8 312.6422 549.0989 Tm ( )Tj ET EMC /P <>BDC BT 8 0 0 8 314.865 549.0989 Tm -.015 Tc (\(within the realms of their professional knowledge, skills and qualifications\).)Tj ET EMC /P <>BDC BT 8 0 0 8 571.2915 549.0989 Tm 0 Tc ( )Tj ET EMC /P <>BDC BT 8 0 0 8 312.6422 537.0989 Tm ( )Tj ET EMC /P <>BDC BT 8 0 0 8 314.865 537.0989 Tm (It is vital to ensure an individual is in agreement about the making of )Tj ET EMC /P <>BDC BT 8 0 0 8 312.6422 525.0989 Tm ( )Tj ET EMC /P <>BDC BT 8 0 0 8 314.865 525.0989 Tm (any referral to local psychological services, and this should be clearly )Tj ET EMC /P <>BDC BT 8 0 0 8 312.6422 513.0989 Tm ( )Tj ET EMC /P <>BDC BT 8 0 0 8 314.865 513.0989 Tm [(documented in written format within an individual)18.1(s healthcare record.)]TJ ET EMC /P <>BDC BT 8 0 0 8 559.7361 513.0989 Tm ( )Tj ET EMC /P <>BDC BT 8 0 0 8 303.5264 495.4296 Tm (5.)Tj ET EMC /P <>BDC BT /TT4 1 Tf 8 0 0 8 312.6422 495.4296 Tm ( )Tj ET EMC /P <>BDC BT 8 0 0 8 314.865 495.4296 Tm (Refer for immediate/crisis psychological support in a mental )Tj ET EMC /P <>BDC BT 8 0 0 8 312.6422 483.4296 Tm ( )Tj ET EMC /P <>BDC BT 8 0 0 8 314.865 483.4296 Tm (health crisis situation. )Tj ET EMC /P <>BDC BT /TT2 1 Tf 8 0 0 8 401.5524 483.4296 Tm [(A)55.2( mental health emergency should be taken )]TJ ET EMC /P <>BDC BT 8 0 0 8 312.6422 471.4296 Tm ( )Tj ET EMC /P <>BDC BT 8 0 0 8 314.865 471.4296 Tm (as seriously as a physical one. Where someone's life is at risk for )Tj ET EMC /P <>BDC BT 8 0 0 8 312.6422 459.4296 Tm ( )Tj ET EMC /P <>BDC BT 8 0 0 8 314.865 459.4296 Tm (example, they do not feel able to keep themself or someone else safe, )Tj ET EMC /P <>BDC BT 8 0 0 8 312.6422 447.4296 Tm ( )Tj ET EMC /P <>BDC BT 8 0 0 8 314.865 447.4296 Tm (it is vital that healthcare professionals call 999 or present the individual )Tj ET EMC /P <>BDC BT 8 0 0 8 312.6422 435.4296 Tm ( )Tj ET EMC /P <>BDC BT 8 0 0 8 314.865 435.4296 Tm [(to their local )55.2(Accident and Emergency department. )]TJ ET EMC /P <>BDC BT 8 0 0 8 495.8533 435.4296 Tm ( )Tj ET EMC /P <>BDC BT 8 0 0 8 312.6422 417.7603 Tm ( )Tj ET EMC /P <>BDC BT 8 0 0 8 314.865 417.7603 Tm (Healthcare professionals should be aware of the NHS website )Tj ET EMC /P <>BDC BT 8 0 0 8 312.6422 405.7603 Tm ( )Tj ET EMC /P <>BDC BT 8 0 0 8 314.865 405.7603 Tm (\()Tj ET EMC /P <>BDC BT 8 0 0 8 317.529 405.7603 Tm 1 .89 0 0 k [(www)55.2(.nhs.uk/using-the-nhs/nhs-services/mental-health-services/)]TJ ET EMC /P <>BDC BT 8 0 0 8 312.6422 393.7603 Tm ( )Tj ET EMC /P <>BDC BT 8 0 0 8 314.865 393.7603 Tm (dealing-with-a-mental-health-crisis-or-emergency/)Tj ET EMC /P <>BDC BT 8 0 0 8 490.9275 393.7603 Tm 0 0 0 .8 k [(\). )18.1(This portal provides )]TJ ET EMC /P <>BDC BT 8 0 0 8 312.6422 381.7603 Tm ( )Tj ET EMC /P <>BDC BT 8 0 0 8 314.865 381.7603 Tm -.01 Tc (comprehensive information and direction about how to support individuals )Tj ET EMC /P <>BDC BT 8 0 0 8 312.6422 369.7603 Tm 0 Tc ( )Tj ET EMC /P <>BDC BT 8 0 0 8 314.865 369.7603 Tm (to get immediate help in a crisis situation across the United Kingdom. )Tj ET EMC /P <>BDC BT 8 0 0 8 561.6541 369.7603 Tm ( )Tj ET EMC /P <>BDC BT /TT4 1 Tf 9 0 0 9 22.6772 814.1656 Tm 1 .15 0 0 k [(THE BRITISH INTESTINAL)18.1( F)55.2(AILURE )37.1(ALLIANCE \(BIF)55.2(A\) T)18.1(O)0(P)18.1( TIPS )37.1(ARTICLE SERIES)]TJ ET EMC /Artifact <>BDC 0 0 0 .6 k 0 806.781 595.2 1.4171 re f EMC /Artifact <>BDC 1 .1 0 .1 k 0 .12 595.2 31.362 re f EMC /P <>BDC BT /TT2 1 Tf 8 0 0 8 22.6772 14.3583 Tm 0 0 0 0 k [(BIF)55.2(A)55.2( is a Specialist Interest Group of ϳԹ )]TJ ET EMC /P <>BDC BT /TT4 1 Tf 8 0 0 8 191.2007 14.3583 Tm [(www)37.1(.bapen.org.uk )]TJ ET EMC /Artifact <>BDC 0 0 0 .08 k 22.379 198.51 549.697 156.926 re f EMC /P <>BDC BT 9 0 0 9 37.8488 335.5717 Tm 1 .89 0 0 k (Suggested reading:)Tj ET EMC /P <>BDC BT /TT2 1 Tf 8 0 0 8 145.8488 335.5717 Tm 0 0 0 .8 k ( )Tj ET EMC /P <>BDC BT 8 0 0 8 37.8488 323.5717 Tm ()Tj ET EMC /P <>BDC BT 8 0 0 8 46.3527 323.5717 Tm [(Ennis L, )55.2(Ablett J, )18.1(T)110.8(aylor M and Lal S. )18.1(The active problem solving of patients dependent on home parenteral nutrition: )55.2(A)55.2( qualita)]TJ 55.442 0 TD (tive analysis. )Tj ET EMC /P <>BDC BT 8 0 0 8 46.3527 311.5717 Tm [(Clin Nutr)55.2(. 2018; 26\(1\): 77-83)]TJ ET EMC /P <>BDC BT 8 0 0 8 147.2979 311.5717 Tm ( )Tj ET EMC /P <>BDC BT 8 0 0 8 37.8488 299.5717 Tm ()Tj ET EMC /P <>BDC BT 8 0 0 8 46.3527 299.5717 Tm [(Harris R. \(2009\) )55.2(ACT)18.1( made simple: )55.2(A)55.2( quick-start guide to )55.2(ACT)18.1( basics and beyond, Oakland CA, New Harbinger)55.2(.)]TJ ET EMC /P <>BDC BT 8 0 0 8 440.9114 299.5717 Tm ( )Tj ET EMC /P <>BDC BT 8 0 0 8 37.8488 287.5717 Tm ()Tj ET EMC /P <>BDC BT 8 0 0 8 46.3527 287.5717 Tm [(Heaney )55.2(A, McKenna S, Wilburn J, et al. )18.1(The impact of Home Parenteral Nutrition on the lives of adults with )18.1(T)55.2(ype 3 Intestinal Fa)]TJ 56.1022 0 TD [(ilure. Clin Nutr)55.2(. )]TJ ET EMC /P <>BDC BT 8 0 0 8 46.3527 275.5717 Tm (2018; 26\(1\): 35-40)Tj ET EMC /P <>BDC BT 8 0 0 8 112.1768 275.5717 Tm ( )Tj ET EMC /P <>BDC BT 8 0 0 8 37.8488 263.5717 Tm ()Tj ET EMC /P <>BDC BT 8 0 0 8 46.3527 263.5717 Tm [(Manson B \(2019\) Living with artificial nutrition: Information booklet. )55.2(Accessed on PINNT)18.1( website 24th September 2020: https://p)]TJ 56.3449 0 TD (innt.com )Tj ET EMC /P <>BDC BT 8 0 0 8 529.5674 263.5717 Tm ( )Tj ET EMC /P <>BDC BT 8 0 0 8 37.8488 251.5717 Tm ()Tj ET EMC /P <>BDC BT 8 0 0 8 46.3527 251.5717 Tm [(Winkler M, Hagan, E, W)18.1(etle )18.1(T)110.8(,)0( et al. )55.2(An exploration of quality of life and the experience of living with home parenteral nutrit)]TJ 53.8805 0 TD (ion. 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