Geriatric Nursing 36 (2015) 319e321

Contents lists available at ScienceDirect

Geriatric Nursing journal homepage: www.gnjournal.com

Acute Care of the Elderly Column

Elizabeth Capezuti, PhD, RN, FAAN

Sarah Hope Kagan, PhD, RN, FAAN

Mary Beth Happ, PhD, RN, FAAN

Lorraine C. Mion, PhD, RN, FAAN

Notes on family caregiving in acute and critical care Mary Beth Happ, PhD, RN, FAAN, FGSA a, *, Judith A. Tate, PhD, RN a, Judy E. Davidson, DNP, RN, FCCM b a b

The Ohio State University College of Nursing, Center of Excellence in Critical and Complex Care, USA University of California San Diego Health System, USA

Having spent more than 15 years of our careers observing patient care and communication in the ICU setting, we recognize the important role family caregivers play at the bedside of acute and critically ill older adults. Over these years, like many of you, we have also experienced the privilege and pathos of serving as family caregivers for older adult family members during hospitalization and at home. While this is a normal part of life and love and being in family, recent evidence points to the importance of re-examining what we mean by “family-centered care,” particularly in critical care environments, with the goal of preventing potentially detrimental long-term consequences affecting family caregivers of critically ill patients. Critical illness has immediate and prolonged psychological effects on family caregivers. This is true for family caregivers of ICU survivors as well as for bereaved family members of patients who die in the ICU. Post-intensive care syndrome in family caregivers (PICS-F) is a constellation of mental health problems, e.g., anxiety, depression, sleep disorders, post-traumatic stress disorder, and complicated grief, experienced by family caregivers arising from and persisting for 1-year or more after a patient’s critical illness1 (Table 1). Lists symptoms and risk factors of PICS-F. PICS-F is becoming a serious and burgeoning health concern that limits family caregivers’ abilities to provide competent care and decision making for patients in the post-acute care period. However, this syndrome often goes unrecognized, thus forcing the family to cope on their own. The scope of the problem is expected to expand as a larger aging demographic faces critical care hospitalizations and/or prolonged critical illness. Consequently, nursing care in the hospital

* Corresponding author. E-mail address: [email protected] (M.B. Happ). 0197-4572/$ e see front matter Ó 2015 Elsevier Inc. All rights reserved. http://dx.doi.org/10.1016/j.gerinurse.2015.06.009

must incorporate preventive interventions and post-ICU “recovery” must include plans for ongoing assessment and early intervention to minimize the devastating effects of post-ICU syndrome. Who are family caregivers of older adults in acute-critical care? Family caregiver is defined as the individual, related or unrelated, who provides primary support during hospitalization and with whom the patient has a significant relationship.2 Family caregivers are most often spouses or adult children of the older adult patient and are usually women. Family caregiving in the context of critical illness is typically not planned, unexpected, and disruptive. A critical illness can upset the tenuous balance of mutual caregiving among older couples with chronic conditions. Family members or friends sometimes enter into the caregiving role by default rather than choice. Viewing the family caregiver as a single person is often a false assumption. Typically, family caregiving is a shared activity e different members of the family may assume different roles (e.g., information gatherer/translator, primary decision maker, physical caregiver, or organizer), or may have caregiving responsibilities for more than one older adult family member, children, and/or grandchildren.3 Family cultural norms may dictate role and hierarchy. For example, the 78-year old sister of an incapacitated 72-year old African American man who had suffered a severe stroke was the family caregiver who served as spokesperson and provided bedside visitation and support in the ICU. However, she was responsible to (and for) a pair of homebound, nonagenarian aunts who shared powerfully in treatment decision making for the patient. Additionally, the primary family caregiver(s) in the hospital may not be the older adult patient’s primary family caregiver(s) at

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Table 1 Symptoms and risk factors for post-intensive care syndrome e family.1 Symptoms

Risk factors

Higher stress levels

Anxiety

Female

Depression Acute stress PTSD

Family caregiver age (younger) Patient age (younger) Lower educational level

Family member died or was at high risk of dying Unexpected critical illness

Non-specific emotional distress Complicated grief

Critically ill spouse

Fatigue, Sleep disturbance

Additional stressor, e.g., additional hospitalization

Pre-existing or family history of anxiety, depression or severe mental illness Higher stress levels

home. We have seen elaborate schedules of shared caregiving for older adults during and after hospitalization. This truth certainly complicates planning for family caregiver follow-up. Indeed, PICS-F may be compounded by caregiving responsibilities following the ICU stay. What are the effects of critical illness hospitalization on family caregivers? Psychological symptoms are experienced by families during the acute phase of critical illness and can persist for more than one-year after discharge. Symptoms of depression are highly prevalent among family caregivers of critically ill patients during ICU admission and continue for up to 12 months following discharge.4e10 Anxiety is also common (35e80%) in family caregivers during ICU admission and remains high at ICU discharge.4e8 Symptoms of PTSD were reported in 35e50% of caregivers evaluated at 3e6 months after ICU discharge.11e13 A recent study identified complicated grief symptoms, a maladaptive syndrome of prolonged and intensified grief,14,15 in over half of relatives of patients who died in ICU 6-months (52%) and 12-months (53%) after the patient’s death.16 How might family presence help critically ill older adults and family caregivers? There is compelling evidence that interactions with family members can be therapeutic for critically ill patients, help to make sense of the experience, and may ameliorate the stress and trauma experienced by patients and family during and after ICU hospitalization.17e21 Recommendations to enhance the family caregiver bedside experience include supporting family presence at bedside rounds, procedures, and resuscitation; encouraging note-taking or journaling; bringing photos of the patient to the ICU; preparing an information board; supporting a shared decision-making model; early and repeated care conferencing with family; honoring culturally appropriate requests for truth-telling and informed refusal; spiritual support; staff education and debriefing to minimize the impact of family interactions on staff health; open flexible visitation; way-finding and family-friendly signage; and family support before, during, and after a death.22 These recommendations and a review of the evidence base to support family-centered care in the ICU are currently being updated by a special interdisciplinary Society of Critical Care Medicine Task Force. Resources for family members are available on the website of the Society for Critical Care Medicine (http://www.myicucare.org/).

What are the gaps in evidence? For family caregivers, critical illness is fraught with uncertainty, rapid changes in patient condition, and overwhelming sights of their vulnerable loved one. When combined with periods of sleep disruption, poor nutrition and stress, it is easy to understand how families are at risk for long-term negative health consequences. We have little comparative evidence of what interventions are most effective in helping families of ICU patients, particularly older adult caregivers, and few have been designed to ameliorate PICS-F. While family-centered care in the ICU has gained support, we have little evidence to calibrate family needs or tolerance for engagement and presence. Is the family that maintains long periods of presence at the bedside better off than the family that seeks respite, engages in self-care and goes home to rest? Vigilance and prolonged bedside presence may be a socially constructed view of what a “good family” does in the context of acute and critical illness. On the other hand, leaving the bedside of a critically ill loved one may be extremely stressful and traumatic contributing to PICS-F for some family caregivers.1 Nurses and other members of the health care team must be sensitive to each family caregiver’s response and need for presence, gauging offers of respite accordingly. Because family capacity and interest in participating with caregiving activities will vary, it is important to individualize the approach to teaching families bedside activities. A caregiving assessment can be performed using the Family Preference Index (FPRI) to assess preference for active engagement during hospitalization.23,24 This 14 item questionnaire does not include all possibilities, however, performing the assessment will open a dialogue about welcoming active family engagement, which may support coping, provide role clarification and preserve family integrity. Many studies have focused on improved information giving and communication between providers and families in the context of treatment or end-of-life decision-making and demonstrate the positive effect of high-quality family meetings.25 We could find no studies of interventions to support communication between family caregiver and the communication-impaired critically ill older adult. Few studies have focused on strategies to maintain family caregiver mental and physical health or to improve planning post-ICU care for older adults especially when care responsibility is transferred from an institutional setting to the home. Support for families might be delivered through innovative applications of e-Health technology or follow-up ICU care models. Next steps We recommend increased attention and services to family caregivers as a critical component of ICU care for older patients. Family centered care for critically ill older adults and their family caregivers must not stop when the patient is discharged. The development and testing of interventions to support family caregivers should encompass the trajectory of illness and recovery extending beyond the acute phase of critical illness and into the post-ICU period. References 1. Davidson JE, Jones C, Bienvenu OJ. Family response to critical illness: postintensive care syndrome-family. Crit Care Med. 2012;40(2):618e624. 2. American Academy of Hospice Palliative. National Consensus Project for quality palliative care: clinical practice guidelines for quality palliative care, executive summary. J Palliat Med. 2004;7(5):611e627. 3. Lingler J, Sherwood P, Crighton M, Song MK, Happ MB. Conceptual challenges in the study of caregiver-care recipient relationships. Nurs Res. 2008;57(5): 367e372. PMCID: PMC2875992.

M.B. Happ et al. / Geriatric Nursing 36 (2015) 319e321 4. Pochard F, Azoulay E, Chevret S, et al. Symptoms of anxiety and depression in family members of intensive care unit patients: ethical hypothesis regarding decision-making capacity. Crit Care Med. 2001;29(10): 1893e1897. 5. Hickman Jr RL, Daly BJ, Douglas SL, Clochesy JM. Informational coping style and depressive symptoms in family decision makers. Am J Crit Care. 2010;19(5): 410e420. 6. McAdam JL, Dracup KA, White DB, Fontaine DK, Puntillo KA. Symptom experiences of family members of intensive care unit patients at high risk for dying. Crit Care Med. 2010;38(4):1078e1085. 7. Paparrigopoulos T, Melissaki A, Efthymiou A, et al. Short-term psychological impact on family members of intensive care unit patients. J Psychosom Res. 2006;61(5):719e722. 8. Pochard F, Darmon M, Fassier T, et al. Symptoms of anxiety and depression in family members of intensive care unit patients before discharge or death. A prospective multicenter study. J Crit Care. 2005;20(1): 90e96. 9. Douglas SL, Daly BJ, O’Toole E, Hickman Jr RL. Depression among white and nonwhite caregivers of the chronically critically ill. J Crit Care. 2010;25(2). 364.e311e9. 10. Haines KJ, Denehy L, Skinner EH, Warrillow S, Berney S. Psychosocial outcomes in informal caregivers of the critically ill: a systematic review. Crit Care Med. 2015;43(5):1112e1120. 11. Azoulay E, Pochard F, Kentish-Barnes N, et al. Risk of post-traumatic stress symptoms in family members of intensive care unit patients. Am J Respir Crit Care Med. 2005;171(9):987e994. 12. Anderson WG, Arnold RM, Angus DC, Bryce CL. Posttraumatic stress and complicated grief in family members of patients in the intensive care unit. J Gen Intern Med. 2008;23(11):1871e1876. 13. Jones C, Skirrow P, Griffiths RD, et al. Post-traumatic stress disorder-related symptoms in relatives of patients following intensive care. Intensive Care Med. 2004;30(3):456e460.

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14. Center for Disease Control and Prevention. Anxiety and Depression, http://www. cdc.gov/Features/dsBRFSSDepressionAnxiety/; 2009. Accessed 22.02.11. 15. Shear MK, Simon N, Wall M, et al. Complicated grief and related bereavement issues for DSM-5. Depress Anxiety. 2011;28(2):103e117. 16. Kentish-Barnes N, Chaize M, Seegers V, et al. Complicated grief after death of a relative in the intensive care unit. Eur Respir J. 2015;45(5):1341e1352. 17. Black P, Boore JRP, Parahoo K. The effect of nurse-facilitated family participation in the psychological care of the critically ill patient. J Adv Nurs. 2011;67(5): 1091e1101. 18. Davidson JE, Daly BJ, Agan D, Brady NR, Higgins PA. Facilitated sensemaking: a feasibility study for the provision of a family support program in the intensive care unit. Crit Care Nurs Q. 2010;33(2):177e189. 19. Bergbom I, Askwall A. The nearest and dearest: a lifeline for ICU patients. Intensive Crit Care Nurs. 2000;16(6):384e395. 20. Garrouste-Orgeas M, Coquet I, Périer A, et al. Impact of an intensive care unit diary on psychological distress in patients and relatives. Crit Care Med. 2012;40(7):2033e2040. 21. Garrouste-Orgeas M, Périer A, Mouricou P, et al. Writing in and reading ICU diaries: qualitative study of families’ experience in the ICU. PLoS One. 2014 Oct 16;9(10):e110146. 22. Davidson JE, Powers K, Hedayat KM, et al. Clinical practice guidelines for support of the family in the patient-centered intensive care unit: American College of Critical Care Medicine Task Force 2004-2005. Crit Care Med. 2007;35(2):605e622. 23. Boltz M. Assessing family preferences for participation in care in hospitalized older adults. Try This; 2015. http://consultgerirn.org/uploads/File/trythis/ try_this_22.pdf; Accessed 03.07.15. 24. Giambattista L, Howard R, Ruhe Porto R, et al. NICHE recommended care of the critically ill older adult. Crit Care Nurs Q. 2015;38(3):223e230. 25. Scheunemann LP, McDevitt M, Carson SS, Hanson LC. Randomized, controlled trials of interventions to improve communication in intensive care: a systematic review. Chest. 2011;139(3):543e554.

Notes on family caregiving in acute and critical care.

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