Identifying patients' support needs following critical illness: a scoping review of the qualitative literature

J King, B O'Neill, P Ramsay, M A Linden, A Darweish Medniuk, J Outtrim, B Blackwood, J King, B O'Neill, P Ramsay, M A Linden, A Darweish Medniuk, J Outtrim, B Blackwood

Abstract

Background: Intensive care survivors suffer chronic and potentially life-changing physical, psychosocial and cognitive sequelae, and supporting recovery is an international priority. As survivors' transition from the intensive care unit to home, their support needs develop and change.

Methods: In this scoping review, we categorised patients' support needs using House's Social Support Needs framework (informational, emotional, instrumental, appraisal) and mapped these against the Timing it Right framework reflecting the patient's transition from intensive care (event/diagnosis) to ward (stabilisation/preparation) and discharge home (implementation/adaptation). We searched electronic databases from 2000 to 2017 for qualitative research studies reporting adult critical care survivors' experiences of care. Two reviewers independently screened, extracted and coded data. Data were analysed using a thematic framework approach.

Results: From 3035 references, we included 32 studies involving 702 patients. Studies were conducted in UK and Europe (n = 17, 53%), Canada and the USA (n = 6, 19%), Australasia (n = 6, 19%), Hong Kong (n = 1, 3%), Jordan (n = 1, 3%) and multi-country (n = 1, 3%). Across the recovery trajectory, informational, emotional, instrumental, appraisal and spiritual support needs were evident, and the nature and intensity of need differed when mapped against the Timing it Right framework. Informational needs changed from needing basic facts about admission, to detail about progress and treatments and coping with long-term sequelae. The nature of emotional needs changed from needing to cope with confusion, anxiety and comfort, to a need for security and family presence, coping with flashbacks, and needing counselling and community support. Early instrumental needs ranged from managing sleep, fatigue, pain and needing nursing care and transitioned to needing physical and cognitive ability support, strength training and personal hygiene; and at home, regaining independence, strength and return to work. Appraisal needs related to obtaining feedback on progress, and after discharge, needing reassurance from others who had been through the ICU experience.

Conclusions: This review is the first to identify the change in social support needs among intensive care survivors as they transition from intensive care to the home environment. An understanding of needs at different transition periods would help inform health service provision and support for survivors.

Keywords: Critical illness; Qualitative research; Recovery; Scoping review; Support needs.

Conflict of interest statement

The authors declare that they have no competing interests.

Figures

Fig. 1
Fig. 1
Social Support Needs framework
Fig. 2
Fig. 2
Timing it Right framework
Fig. 3
Fig. 3
Review flow chart

References

    1. Adhikari NK, Fowler RA, Bhagwanjee S, Rubenfeld GD. Critical care and the global burden of critical illness in adults. Lancet. 2010;376(9749):1339–1346. doi: 10.1016/S0140-6736(10)60446-1.
    1. Rawal Gautam, Yadav Sankalp, Kumar Raj. Post-intensive care syndrome: An overview. Journal of Translational Internal Medicine. 2017;5(2):90–92. doi: 10.1515/jtim-2016-0016.
    1. Oeyen SG, Vandijck DM, Benoit DD, Annemans L, Decruyenaere JM. Quality of life after intensive care: a systematic review of the literature. Crit Care Med. 2010;38(12):2386–2400. doi: 10.1097/CCM.0b013e3181f3dec5.
    1. van Beusekom I, Bakhshi-Raiez F, de Keizer NF, Dongelmans DA, van der Schaaf M. Reported burden on informal caregivers of ICU survivors: a literature review. Crit care. 2016;20:16. doi: 10.1186/s13054-016-1185-9.
    1. Abdalrahim MS, Zeilani RS. Jordanian survivors’ experiences of recovery from critical illness: a qualitative study. Int Nurs Rev. 2014;61(4):570–577. doi: 10.1111/inr.12142.
    1. Hodgson CL, Capell E, Tipping CJ. Early mobilization of patients in intensive care: organization, communication and safety factors that influence translation into clinical practice. Crit Care. 2018;22(1):77. doi: 10.1186/s13054-018-1998-9.
    1. Elliott D, Davidson JE, Harvey MA, Bemis-Dougherty A, Hopkins RO, Iwashyna TJ. Exploring the scope of post-intensive care syndrome therapy and care: engagement of non-critical care providers and survivors in a second stakeholders meeting. Crit Care Med. 2014;42(12):2518–2526. doi: 10.1097/CCM.0000000000000525.
    1. Reay H, Arulkumaran N, Brett SJ. Priorities for future intensive care research in the UK: results of a James Lind Alliance Priority Setting Partnership. J Intensive Care Soc. 2014;15(4):288–296. doi: 10.1177/175114371401500405.
    1. Needham DM, Davidson J, Cohen H, Hopkins RO, Weinert C, Wunsch H. Improving long-term outcomes after discharge from intensive care unit: report from a stakeholders’ conference. Crit Care Med. 2012;40(2):502–509. doi: 10.1097/CCM.0b013e318232da75.
    1. Iwashyna TJ. Survivorship will be the defining challenge of critical care in the 21st century. Ann Intern Med. 2010;153(3):204–205. doi: 10.7326/0003-4819-153-3-201008030-00013.
    1. Iwashyna TJ. Trajectories of recovery and dysfunction after acute illness, with implications for clinical trial design. Am J Respir Crit Care Med. 2012;186(4):302–304. doi: 10.1164/rccm.201206-1138ED.
    1. Kean S, Salisbury LG, Rattray J, Walsh TS, Huby G, Ramsay P. Intensive care unit survivorship’ - a constructivist grounded theory of surviving critical illness. J Clin Nurs. 2017;26(19–20):3111–3124. doi: 10.1111/jocn.13659.
    1. Govindan S, Iwashyna TJ, Watson SR, Hyzy RC, Miller MA. Issues of survivorship are rarely addressed during intensive care unit stays. Baseline results from a statewide quality improvement collaborative. Ann Am Thorac Soc. 2014;11(4):587–591. doi: 10.1513/AnnalsATS.201401-007BC.
    1. Aro I, Pietila AM, Vehvilainen-Julkunen K. Needs of adult patients in intensive care units of Estonian hospitals: a questionnaire survey. J Clin Nurs. 2012;21(13–14):1847–1858. doi: 10.1111/j.1365-2702.2012.04092.x.
    1. Rattray J, Johnston M, Wildsmith JA. The intensive care experience: development of the ICE questionnaire. J Adv Nurs. 2004;47(1):64–73. doi: 10.1111/j.1365-2648.2004.03066.x.
    1. Ramsay P, Huby G, Merriweather J, Salisbury L, Rattray J, Griffith D, Walsh T, Collaborators R. Patient and carer experience of hospital-based rehabilitation from intensive care to hospital discharge: mixed methods process evaluation of the RECOVER randomised clinical trial. BMJ Open. 2016;6(8):e012041. doi: 10.1136/bmjopen-2016-012041.
    1. Akerman E, Fridlund B, Ersson A, Granberg-Axell A. Development of the 3-SET 4P questionnaire for evaluating former ICU patients’ physical and psychosocial problems over time: a pilot study. Intensive Crit Care Nurs. 2009;25(2):80–89. doi: 10.1016/j.iccn.2008.06.004.
    1. Akerman E, Fridlund B, Samuelson K, Baigi A, Ersson A. Psychometric evaluation of 3-set 4P questionnaire. Intensive Crit Care Nurs. 2013;29(1):40–47. doi: 10.1016/j.iccn.2012.06.002.
    1. Ewing G, Grande G. Development of a Carer Support Needs Assessment Tool (CSNAT) for end-of-life care practice at home: a qualitative study. Palliat Med. 2013;27(3):244–256. doi: 10.1177/0269216312440607.
    1. Rotondi AJ, Sinkule J, Balzer K, Harris J, Moldovan R. A qualitative needs assessment of persons who have experienced traumatic brain injury and their primary family caregivers. J Head Trauma Rehabil. 2007;22(1):14–25. doi: 10.1097/00001199-200701000-00002.
    1. Reigada C, Bajwah S, Ross J, Boland J, Wells A, Yorke J, Grande G, Hart S, Currow D, Papadopoulos T, et al. Adaptation, face and content validation of a palliative care needs assessment tool for people with interstitial lung disease. BMJ Support. 2015;5(1):111–112.
    1. House JS: Work stress and social support: Reading, Mass. : Addison-Wesley Pub. Co., ©1981.; 1981.
    1. Cameron JI, Gignac MA. “Timing It Right”: a conceptual framework for addressing the support needs of family caregivers to stroke survivors from the hospital to the home. Patient Educ Couns. 2008;70(3):305–314. doi: 10.1016/j.pec.2007.10.020.
    1. Czerwonka AI, Herridge MS, Chan L, Chu LM, Matte A, Cameron JI. Changing support needs of survivors of complex critical illness and their family caregivers across the care continuum: a qualitative pilot study of towards RECOVER. J Crit Care. 2015;30(2):242–249. doi: 10.1016/j.jcrc.2014.10.017.
    1. Lee CM, Herridge MS, Matte A, Cameron JI. Education and support needs during recovery in acute respiratory distress syndrome survivors. Crit Care. 2009;13(5):R153. doi: 10.1186/cc8053.
    1. Tricco AC, Lillie E, Zarin W, O'Brien KK, Colquhoun H, Levac D, Moher D, Peters MDJ, Horsley T, Weeks L, et al. PRISMA extension for scoping reviews (PRISMA-ScR): checklist and explanation. Ann Intern Med. 2018;169(7):467–473. doi: 10.7326/M18-0850.
    1. Arksey Hilary, O'Malley Lisa. Scoping studies: towards a methodological framework. International Journal of Social Research Methodology. 2005;8(1):19–32. doi: 10.1080/1364557032000119616.
    1. Williams SL. Recovering from the psychological impact of intensive care: how constructing a story helps. Nurs Crit Care. 2009;14(6):281–288. doi: 10.1111/j.1478-5153.2009.00354.x.
    1. Adamson H, Murgo M, Boyle M, Kerr S, Crawford M, Elliott D. Memories of intensive care and experiences of survivors of a critical illness: an interview study. Intensive Crit Care Nurs. 2004;20(5):257–263. doi: 10.1016/j.iccn.2004.06.005.
    1. Hupcey JE. Feeling safe: the psychosocial needs of ICU patients. J Nurs Scholarsh. 2000;32(4):361–367. doi: 10.1111/j.1547-5069.2000.00361.x.
    1. Lof L, Berggren L, Ahlstrom G. ICU patients’ recall of emotional reactions in the trajectory from falling critically ill to hospital discharge: follow-ups after 3 and 12 months. Intensive Crit Care Nurs. 2008;24(2):108–121. doi: 10.1016/j.iccn.2007.08.001.
    1. Magarey JM, McCutcheon HH. Fishing with the dead’--recall of memories from the ICU. Intensive Crit Care Nurs. 2005;21(6):344–354. doi: 10.1016/j.iccn.2005.02.004.
    1. Bench SD, Day T, Griffiths P. Involving users in the development of effective critical care discharge information: a focus group study. Am J Crit Care. 2011;20(6):443–452. doi: 10.4037/ajcc2011829.
    1. Ramsay P, Huby G, Thompson A, Walsh T. Intensive care survivors’ experiences of ward-based care: Meleis’ theory of nursing transitions and role development among critical care outreach services. J Clin Nurs. 2013;23(5-6):605–615. doi: 10.1111/jocn.12452.
    1. Strahan EH, Brown RJ. A qualitative study of the experiences of patients following transfer from intensive care. Intensive Crit Care Nurs. 2005;21(3):160–171. doi: 10.1016/j.iccn.2004.10.005.
    1. Bench SD, Heelas K, White C, Griffiths P. Providing critical care patients with a personalised discharge summary: a questionnaire survey and retrospective analysis exploring feasibility and effectiveness. Intensive Crit Care Nurs. 2014;30(2):69–76. doi: 10.1016/j.iccn.2013.08.007.
    1. Odell M. The patient’s thoughts and feelings about their transfer from intensive care to the general ward. J Adv Nurs. 2000;31(2):322–329. doi: 10.1046/j.1365-2648.2000.01294.x.
    1. Haraldsson L, Christensson L, Conlon L, Henricson M. The experiences of ICU patients during follow-up sessions--a qualitative study. Intensive Crit Care Nurs. 2015;31(4):223–231. doi: 10.1016/j.iccn.2015.01.002.
    1. Deacon KS. Re-building life after ICU: a qualitative study of the patients’ perspective. Intensive Crit Care Nurs. 2012;28(2):114–122. doi: 10.1016/j.iccn.2011.11.008.
    1. Minton C, Carryer J. Memories of former intensive care patients six months following discharge. Contemp Nurse. 2005;20(2):152–158. doi: 10.5172/conu.20.2.152.
    1. Cox CE, Docherty SL, Brandon DH, Whaley C, Attix DK, Clay AS, Dore DV, Hough CL, White DB, Tulsky JA. Surviving critical illness: acute respiratory distress syndrome as experienced by patients and their caregivers. Crit Care Med. 2009;37(10):2702–2708. doi: 10.1097/CCM.0b013e3181b6f64a.
    1. Jones C, Lyons C, Cunningham C. Life review following critical illness in young men. Nurs Crit Care. 2003;8(6):256–263. doi: 10.1111/j.1362-1017.2003.00040.x.
    1. Palesjo C, Nordgren L, Asp M. Being in a critical illness-recovery process: a phenomenological hermeneutical study. J Clin Nurs. 2015;24(23–24):3494–3502. doi: 10.1111/jocn.13002.
    1. Chahraoui K, Laurent A, Bioy A, Quenot JP. Psychological experience of patients 3 months after a stay in the intensive care unit: a descriptive and qualitative study. J Crit Care. 2015;30(3):599–605. doi: 10.1016/j.jcrc.2015.02.016.
    1. Maddox M, Dunn SV, Pretty LE. Psychosocial recovery following ICU: experiences and influences upon discharge to the community. Intensive Crit Care Nurs. 2001;17(1):6–15. doi: 10.1054/iccn.2000.1536.
    1. Chiang VC. Surviving a critical illness through mutually being there with each other: a grounded theory study. Intensive Crit Care Nurs. 2011;27(6):317–330. doi: 10.1016/j.iccn.2011.09.001.
    1. Hupcey JE. The meaning of social support for the critically ill patient. Intensive Crit Care Nurs. 2001;17(4):206–212. doi: 10.1054/iccn.2000.1568.
    1. Pattison N, O'Gara G, Rattray J. After critical care: patient support after critical care. A mixed method longitudinal study using email interviews and questionnaires. Intensive Crit Care Nurs. 2015;31(4):213–222. doi: 10.1016/j.iccn.2014.12.002.
    1. McKinney AA, Deeny P. Leaving the intensive care unit: a phenomenological study of the patients’ experience. Intensive Crit Care Nurs. 2002;18(6):320–331. doi: 10.1016/S0964-3397(02)00069-1.
    1. Chaboyer W, Kendall E, Kendall M, Foster M. Transfer out of intensive care: a qualitative exploration of patient and family perceptions. Aust Crit Care. 2005;18(4):138–141. doi: 10.1016/S1036-7314(05)80026-8.
    1. Field K, Prinjha S, Rowan K. One patient amongst many’: a qualitative analysis of intensive care unit patients’ experiences of transferring to the general ward. Crit Care. 2008;12(1):R21. doi: 10.1186/cc6795.
    1. Prinjha S, Field K, Rowan K. What patients think about ICU follow-up services: a qualitative study. Crit Care. 2009;13(2):R46. doi: 10.1186/cc7769.
    1. Chaboyer W, Grace J. Following the path of ICU survivors: a quality-improvement activity. Nurs Crit Care. 2003;8(4):149–155. doi: 10.1046/j.1478-5153.2003.00020.x.
    1. Cypress BS. The lived ICU experience of nurses, patients and family members: a phenomenological study with Merleau-Pontian perspective. Intensive Crit Care Nurs. 2011;27(5):273–280. doi: 10.1016/j.iccn.2011.08.001.
    1. Agard AS, Egerod I, Tonnesen E, Lomborg K. Struggling for independence: a grounded theory study on convalescence of ICU survivors 12 months post ICU discharge. Intensive Crit Care Nurs. 2012;28(2):105–113. doi: 10.1016/j.iccn.2012.01.008.
    1. Maslow A. A theory of human motivation. Psychol Rev. 1943;50(4):370–396. doi: 10.1037/h0054346.
    1. Capuzzo M, Volta C, Tassinati T, Moreno R, Valentin A, Guidet B, Iapichino G, Martin C, Perneger T, Combescure C, et al. Hospital mortality of adults admitted to intensive care units in hospitals with and without intermediate care units: a multicentre European cohort study. Crit Care. 2014;18(5):551. doi: 10.1186/s13054-014-0551-8.
    1. Donaghy E, Salisbury L, Lone NI, Lee R, Ramsey P, Rattray JE, Walsh TS. Unplanned early hospital readmission among critical care survivors: a mixed methods study of patients and carers. BMJ Qual Saf. 2018;27(11):915–927. doi: 10.1136/bmjqs-2017-007513.
    1. Lorig K. Outcome measures for health education and other health care interventions. Thousand Oaks: Sage; 1996.
    1. Wallston KA, Stein MJ, Smith CA. Form C of the MHLC scales: a condition-specific measure of locus of control. J Pers Assess. 1994;63(3):534–553. doi: 10.1207/s15327752jpa6303_10.
    1. Prochaska JO, Reading CA, Evers KE. The transtheoretical model and stages of change. In: FML KG, Rimer BK, editors. Health Behavior and Health Education. 2. San Francisco: Jossey-Bass; 1997.
    1. Hibbard JH, Stockard J, Mahoney ER, Tusler M. Development of the patient activation measure (PAM): conceptualizing and measuring activation in patients and consumers. Health Serv Res. 2004;39(4 Pt 1):1005–1026. doi: 10.1111/j.1475-6773.2004.00269.x.
    1. Richardson A, Medina J, Brown V, Sitzia J. Patients’ needs assessment in cancer care: a review of assessment tools. Supportive Care Cancer. 2007;15(10):1125–1144. doi: 10.1007/s00520-006-0205-8.
    1. Polikandrioti M, Goudevenos I, Michalis L, Nikolaou V, Dilanas C, Olympios C, Votteas V, Elisaf M: Validation and reliability analysis of the questionnaire “needs of hospitalized patients with coronary artery disease. Health Sci J 2011, 5(2):137–148.
    1. Boland JW, Reigada C, Yorke J, Hart SP, Bajwah S, Ross J, Wells A, Papadopoulos A, Currow DC, Grande G, et al. The adaptation, Face, and Content Validation of a needs assessment tool: progressive disease for people with interstitial lung disease. J Palliat Med. 2016;19(5):549–555. doi: 10.1089/jpm.2015.0355.

Source: PubMed

Sponsors and Collaborators

Medical Conditions

Drug Interventions

3
Subscribe