Lightening the Load: Nursing Support with Family Members of Critically Ill Adults

V. Vandall-Walker1, L. Jensen2, & K. Oberle3

1Athabasca University, 2University of Alberta, 3University of Calgary

IntroductionThe critical illness of an adult relative constitutes a crisis for the family. The

emotional distress and loss of control experienced by a family member can:• be so stressful that he/she is unable to provide adequate emotional

support to the ill relative• suppress the family member’s immune system • result in depression and• lead to post-traumatic stress disorder.

Researchers have argued variously that the family is often the only VOICE for the patient, and that family are NOT visitors. They should be seen as potential partners in patient care rather than as annoyances.

Although the needs & experiences of, and interventions with this cohort have been researched, how nurses can provide support to them so as to help prevent additional family member stress has not been adequately addressed.

Purpose• to delineate the process of nursing support for family members

from the perspective of family members’ of critically ill adults.

Research Question

How do family members of the critically ill adult describe and explain nursing support for themselves and their family unit?

MethodsParticipants

• 20 family members (of 14 patients) from 4 ICUs of 2 tertiary care centres in Northern Alberta responded to flyers posted in 5 waiting rooms or to word-of-mouth. Related patient ages (24-76 yrs), LOS (24 hrs-270 days) & diagnoses varied widely. Nine were in ICU, 5 transferred, 2 discharged - when relative first interviewed. Three died between 1st & 2nd interview

• 1st interview 3-172 days post patient admission• Represented a range in sex, marital, home locale (urban, rural, out-of-

province), previous ICU experience, and ethnicity as well as in ages (26-73 yrs.), relationship to patient (H,W,S,B,S,D,D-in-L), and occupations.

Procedures• Ethical approval obtained

• a total of 20 face-to-face and 7 telephone interviews (all follow-up) were completed; some interviews involved a family group; most were individual

• Interviews tape recorded and transcribed and

• NUD*ISTTM (1997) used to manage data & track categories

AnalysisGrounded Theory analysis (Strauss & Corbin, 1998) of data conducted.

• Concepts identified subjected to constant comparison• Concepts coded & recoded• Over time, interview questions informed by the emerging theory• Memoing & diagrams aided in analysis

Lightening Our Load

The process of nursing support was revealed:• within context of the critical care environment, the critically ill relative, and

the 'work' of family members of a critically ill adult. • from the perspective of individuals who were recipients of nursing supportNurses impact the family member's 'workload' along a continuum from

positively, through neutrally, to negatively. • Positive involvement is supportive and the converse, unsupportive. • When nurses engage in activities perceived by family members as

supportive, the nurses are LIGHTENING OUR LOAD. • When supported, a family member's energy is conserved, rather than

directed at activities to remove barriers to the patient. On the other hand, unsupportive nursing creates or maintains barriers that

prevent family members from fulfilling their perceived workload.• Energy is not conserved, and nurses do not ‘lighten our load’ but indeed

add to the family member's work.

The process of nursing support, LIGHTENING OUR LOAD consists of three interconnected, cyclical, and recursive phases:

• Engaging With Us, Sustaining Us, and Disengaging From Us. • Each of these phases occurs over minutes, hours, or days, based in large

measure on the family members' and nurses being present at the bedside• and reoccurs with every family member and nurse encounter. Whether or not the family member and nurse have met before, how each

encounter unfolded, and length of admission, influence the speed, depth, and breadth that each phase is experienced.

The individual nurse, patient, and family member circumstances, as well as those of the family unit, the specific culture of each ICU, and hospital milieu, also influence how the process of nursing support is enacted over time

• including such specifics as the nurse's workload, schedule, and comfort dealing with family members.

This context represents a dynamic force, collectively shaping and reshaping the expression of the process of nursing support.

Though the process is presented linearly as discrete phases and categories, there is an interdependent aspect that a one-dimensional representation cannot adequately capture.

This process begins with the admission of the patient to the critical care unit and is based on family member participants' perceptions of critical care nurses helping them in their work to get through the experience.

The end of the process is much less defined. In general terms, it draws to a close following patient death or discharge.

LIGHTENING OUR LOAD alleviates some of the family's workload, and in so

doing, bolsters the family's innate resources to 'get through ' the critical illness of one of their members.

Implications and Conclusion• Delineates the process of nursing support from the family member’s perspective

• Extends understanding of family needs.Reveals family work.

• Can increase ICU nurses’ sensitivity to family ‘work’ & nursing support for this cohort

• Supports open ICU visiting rules and provision of amenities

• Can inform instrument adaptation or development for measuring nursing support and comparing it to outcomes such as LOS, family morbidity, & caregiver burden

• Clarifies relationship of Nursing Support to concepts of Caring, Comfort, Supportive Care, Social Support and Professional Support

Being supportive is knowing that there’s a lot of turmoil; there’s a lot of stuff going on besides the person that’s in the bed; and the nurses having the smarts to know that you are not only dealing with a sick person, you’re dealing with his family and everything else that goes with it. And some of the nurses, like I said, looking at pictures and saying, “Oh, is that your dad? And who’s this?” and taking a genuine interest in you as a family. That’s the kind of support.

FindingsThe Theory of Nursing Support entitled

"Lightening Our Load” comprised of:

The Context of Nursing Support: The Critical Care Environment Critical Care Patients (see “Participants”) Critical Care Family Members (see “Participants”) The Family Member’s Work of Getting Through

The Process of Nursing Support: Lightening Our Load

Engaging Us Sustaining Us Disengaging From Us

Context of Nursing Support: The Critical Care Environment

Setting ICUs: 2-General, 1-Burn, 1-Neuro constant activity, technology dominant generally short LOS ICU access closed - permission only waiting rooms adjacent

Staff & Staffing As Reported by Family Members RNs FT, PT, casual; 12-hr shifts;1-3 patients/shift RNs education, experience, personalities varied enthusiasm for & comfort with family access varied competent patient care was the expected norm RNs did not control the waiting room or pt. assignment the "best" RNs (who valued family) should work ICU "technical competence" expected but not enough the Unit Supervisor influenced by example physician staffing patterns negatively influenced the continuity of care the patient received physicians best accessible if meetings scheduled nurses "always there".

I don't think you could last in the job if you got too personal. You have too many deaths that occur and stuff. I don't think you cannot build some sort of relationship as a human being; you do.

When someone's in ICU, the balance is lost automatically, because you have something going on that just isn't normal that you don't want. You feel so out of control. It's much more intense than visiting for a day. It takes up so much energy.I don't know if nurses know or understand what family members go through. I think if they understood that, they might take a little different viewpoint on all this. And how do you teach that?...You need to get rid of the poor ones and keep bringing in the best people…. they'll work together as a group and a unit, and they'll support each other.

Family Member WorkThe patient and the hospital now the family member's focus, their primary ‘work’.

This is the hardest job I’ve ever done in my life; like going to a job that you just hate. But you’re so far in debt you just have no choice, you still have to do it…So when you have that type of responsibility or that commitment, you’ve got to be there for the person you love most.

Family WORKFamily members worked to break down whatever barriers prevented them from getting what they needed. The waiting room and ICU “wall” represented all barriers needing breaching, so as to gain access to the ill relative, to nurses, to physicians, and to information. Using energy to breach this "wall" served only to add to their 'workload'.

Then when we got to that set of doors, the doors were open and I was walking through; a nurse says, “Where are you going? You can't go. Stop!” I said, “I'm going in.” “No, you can't.” And it was like, holy cow! Talk about feeling powerless. That just about killed me. I'm so upset here, I'm dying”.... You have no idea what that does to somebody when they're stopped right there and the nurse says, “No, you can't go past this point.” So those doors are like the Great Wall of China, and once you're past those doors, you're a part of what's happening.

The patient and the hospital now the family member's focus, their primary ‘work’.

This is the hardest job I’ve ever done in my life; like going to a job that you just hate. But you’re so far in debt you just have no choice, you still have to do it…So when you have that type of responsibility or that commitment, you’ve got to be there for the person you love most in the world, because otherwise he’s going to be gone.

Overview of Family Member Work of Getting Through

gaining access being there

being vigilant and monitoringadvocating

providing information decision making

providing patient caregaining respect/avoiding confrontation

self-carePartnering

Process of Nursing Support: Lightening Our Load

EN

VIR

ON

ME

NT

AL

CO

NT

EX

T

Letting Us In

Acknowledging us.

Welcoming us

Getting Acquainted Orienting us Relating to us

Respecting Us Trusting us Empathizing with us

SUSTAINING US

Reassuring Us Being there for us

Communicating with us Hearing us Informing us Helping us understand Chatting with us

Being accountable to us Being competent Being consistent Being responsive

Involving Us Sharing responsibility with us Negotiating with us Valuing us

Advocating For Us Promoting our self-care Connecting us

DISENGAGING FROM US

Facilitating Us Moving On Guiding our decisions Helping us find meaning

Easing Departure Preparing us Saying goodbye

FAMILY MEMBER CONTEXT

Figure 1. The process of Nursing Support: LIGHTENING OUR LOAD.

NURSE CONTEXT