Family matters: Families experiences in ICU

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Family matters Families experiences in ICU

• Susanne Kean
• PhD, MSc, Dip in Nursing Management Education,
  RN
• School of Health in Social Science
• University of Edinburgh
• Susanne.kean_at_ed.ac.uk

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Background What is already known about families
experiences in ICU?

• Paucity of research examining families
  experiences in ICU and ICU nurses experiences
  with families.
• The Critical Care Family Needs Inventory (CCFNI)
  has dominated research for three decades.
• However, the focus of these studies remains on
  one family member.
• The definition of family or relative is
  inconsistent across studies.
• Excludes children and young people from the
  family unit.
• Is not based on a theoretical family framework
• It fails to explain what identified needs
  actually mean.
• It fails to identify effective family
  interventions in ICU (see also Simpson 1989,
  Hupcey 2000).

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Background What is already known about families
experiences in ICU?

• Qualitative Studies
• Small in numbers
• Impact of critical illness on family
• E.g. Hupcey Penrod (2000), Titler et al (1991),
  Craft et al (1993)
• Experiences of families in ICU
• E.g. Walter (1995), Hughes et al (2005), Lam
  Beaulieu (2004), Ågård, Harder (2007)
• Limitations exclusion of children young
  people, most focus on one family member
  (exception Titler et al)

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The study

• Purpose of the study was to advance
  understanding and gain new insights into
  families experiences with critical illness and
  the care of families in ICU.
• Aims (1) gain a deeper understanding of a
  critical illness event in families (2) include
  the childrens perspective and (3) uncover ICU
  nurses perception of families.
• Questions
• How do families process a critical illness?
• How do children process a critical illness within
  their family?
• How do ICU nurses perceive families within their
  unit?
• What is, from the nurses viewpoint, the role of
  the family within an ICU?
• Sample
• 9 families 12 adults, 12 children/ young people
  (aged 8 -25 years)
• 20 ICU nurses in 5 focus groups (range of ICU
  nursing experience 6 months 20 years)
• Ethics approved by Local Research Ethics
  Committee

3 June 2009, ICU Study Day, Edinburgh
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Susanne Kean
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Study overview
3 June 2009, ICU Study Day, Edinburgh
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Susanne Kean
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The ICU One space two worlds.

• Moonscape the surgical intensive care unit
• The first impact is like finding oneself on the
  moon, or a planet, light years away from the
  dissatisfactions and delights of everyday life.
  Everything is strange, different. The landscape
  is unrecognizable. The rules are dissimilar. It
  even smells different.
• 
  (Cassell 2005 1)

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Do families matter?

• ICUs are the domain of specialities, and
  decisions about a patient's care often involve as
  many as six or eight specialities in various body
  systems, but no one who specialises in family
  systems or in the relations between family
  systems and complex health care systems.
• 
  (Chesla Stannard, 1997 70)

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Family.what is family?

• Families are familiar, but also elusive.
• 
  (Wasoff Dey, 2000)

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Family.what is family?

• There is no agreed definition of what exactly
  constitutes a family (see for example Gubrium
  and Holstein 1990, Bernardes 1997, Greenstein
  2006).
• Families are characterised by
• Sharing a history, tradition and future (Daly
  1992, Gilgun 1992, White Klein 2002).
• Having a built in power hierarchy that is less
  obvious in other groups (Larzelere Klein 1987,
  Copeland White 1991).
• Being intergenerational as well as gendered
  (Broderick 1993, White Klein 2002).
• Much of their behaviour is private and hidden
  (Daly 1992, Greenstein 2006).
• In essence, families can be conceptualised as
  systems of intergenerational individuals that are
  situated in time, cultural and societal context.
  They are self-defined units.

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Findings Critical illness, families and the
emergence of uncertainty

• And to be fair Ive got to say, we were not
  prepared for what we saw but I dont think
  anybody could have prepared us. They could have
  sat down with us for an hour and tried to
  describe and explain. Nothing! I just remember
  being just completely overwhelmed and shocked and
  distraught. (Susan, F4)
• Family members spoke of their shock and
  disbelief at the onset of critical illness.
• For example, Beth (F2) commented that her
  husbands admission was coming out of the blue,
  Jacky (F6) expressed her disbelief and shock at
  her husbands stroke at the age of 45, while
  Fiona (F8), Kierans (17) mother, described her
  experiences following his head injury as life
  has stopped.
• (All names are pseudonyms)

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Findings Critical illness, families and the
emergence of uncertainty

• Sudden and unexpected admission of family member
  to an ICU had an profound and immediate impact on
  the family.
• Roles and responsibilities shifted towards
  healthy partner/ parent.
• Organizing time off work and child care young
  people were cared for by others at some point.
• Families expressed that they felt overwhelmed
  with emotions and uncertainty.
• Feelings of confusion, fear and shock were
  reported across families at the time of the ICU
  admission.
• These emotional reactions are also reported in
  other studies (e.g. Jamerson et al 1996, Hupcey
  Penrod 2000, VanHorn Tesh 2000, Hughes et al
  2005).

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Findings Critical illness, families and the
emergence of uncertainty nurses perspective

• G1 Unfortunately. And I think we all feel that
  post ICU care for patients and relatives is sadly
  neglected. In - well thats my personal feeling.
  (group agreement mhms) I dont think we, we do
  enough to follow these patients and relatives up
  because its a post traumatic stress! You know,
  all the literature, all the evidence says, you
  know, for patients ICU can be considered trauma
  and stress and yet there is not the conventional
  post traumatic stress counselling for these
  patients and their families out there.
• G3 Ideally, there should be follow-up.

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Findings Critical illness, families and the
emergence of uncertainty

• ICU admission can be seen as an traumatic event
  
• Was as such recognized by families and nurses
  across the sample.
• Insight is in line with other studies e.g. Jones
  et al (2004) who found high anxiety levels in
  patients and relatives 6 months after ICU
  discharge
• Results relate to managing the resulting stress
  and clinical uncertainty from an unexpected
  critical illness and refers to strategies
  families used to cope with an otherwise uncertain
  and ambiguous situation.

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Findings Clinical functional uncertainty

• Core experiences of families during critical
  illness evolved around the different aspects of
  uncertainty.

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Findings Clinical uncertainty - seeking
information

• With onset of critical illness immediate need for
  information evident.
• Strategy of seeking and getting information
• Linked to familys ability to cope with and mange
  uncertainty
• Through observing the patient
• Susan (F4) talked about her need to speak to
  him
• Ross (25, F2) commented that being able to talk
  to them (ICU patients) seems to take some of the
  stress and frustration away.
• Families constructed from their observation the
  meaning and purpose of ICU.
• Beth (F2) only patients who are really, really
  seriously ill go to intensive care.
• Sarah (F7) they (her children aged 11 8) kind
  of understood, you know, youre in intensive care
  if youre actually that sick.

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Findings Clinical uncertainty - staying near the
patient

• Strategy of staying near the patient for
  prolonged times served families as a means to
  gather information and cope with the ambiguity of
  the situation.
• Through observing the patient in the clinical
  situation
• Interactions with health care staff.
• Lynn (F 9) just being here and just checking
  out every so often to make sure he is okay.
• Describes a typical response of families in
  managing clinical uncertainty.

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Findings Clinical functional uncertainty

• Clinical uncertainty refers to the unknown and
  sometimes unknowable aspects of critical illness.
• Functional uncertainty differs from clinical
  uncertainty in that this aspect of uncertainty
  focuses on managing a clinically uncertain
  situation.
• Functional uncertainty is used as a means to
  manage individuals and groups during an illness
  situation for ones own functional gain.
• Communication strategy used is one of ambiguity,
  in an attempt to keep all possibilities open for
  the future.
• Functional uncertainty was evident in
  communications between health care professionals
  and families and in interactions within families.

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Findings Functional uncertainty the families
perspective

• Strategy of withholding information or evasion
  were evident in family interactions.
• Fay (12) Actually mum, whats got dad wrong with
  him?
• Mona (10) I smashed the clock.
• Fay Whats got dad wrong with him?
• Mona Yeh, I want to know that too!
• Mother We dont really know he is, he is
  heavily sedated. Well, theyre trying to keep his
  brain quiet.
• While clinical uncertainty prevented any precise
  outcome prognosis, parents at times did not tell
  the whole story in an attempt to protect their
  children or getting some time for their own
  coping with an uncertain situation.

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FindingsFunctional uncertainty the nurses
perspective

• F1 I find if you- you know, we do tracheotomies
  and things, and particularly with Neuro patients,
  I find that if you are talking to relatives and
  you know yourself youve got a gut feeling that
  in the next 3-4 days theres no way theyre going
  to be extubated, their conscious level is not
  good enough, I find that if you slip in things
  like, you know, possibly you heard that man
  down there got a tracheotomy the other day and I
  mean they might think about something like that,
  just be very vague about it. I find that if then
  in 3-4 days time it comes to something like that
  and somebody goes to speak to the relatives they
  go thats right, (name of nurse) mentioned that
  the other day. Do you know what I mean? And
  theyre much more receptive to stuff like that.
  So, if you sort of try to/
• F3 /Yeh, I think its/
• F1 /test the water a wee bit./
• F2 /your confidence and you knowledge as well.
• F1 F3 Mhmm. Thats right.
• F1 Its like dealing with patients that are
  dying or transplantations, you know. All these
  things, you know exactly because youve done it
  before.

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Findings Functional uncertainty

• Communication strategies
• slipping in things
• Being vague about possibilities
• Functioned in preparing families for a possible
  course of action or development in the situation.
• Communication strategy is based on a gradual
  build-up to a required intervention (McIntosh
  1977)
• The functional gain is clearly linked to families
  being more receptive and hence compliant in
  accepting a suggested or necessary procedure.
• Being honest and open but at the same time
  ambiguous and vague in the communication is of
  importance in order to allow for different
  outcomes.
• In preserving a certain degree of uncertainty,
  health care professionals maintain flexibility in
  their approach to treating critically ill
  patients, instill hope in family members and help
  to construct new meaning of the situation (e.g.
  Komesaroff 2005).
• Conclusion An important aspect of clinical
  communications is not to resolve all
  uncertainties but to preserve them for the
  functional gain of health care professionals and
  the systems within which they work.

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Summary

• Uncertainty emerged with the admission to ICU.
• Family life changes from the moment a patient is
  admitted.
• Study findings relating to theses changes
  correlated with a number of other studies (e.g.
  Titler et al 1991, Craft et al 1993, Hupcey
  Penrod 2000)
• Clinical uncertainty emerged in situations where
  the aetiology, diagnosis or the prognosis
  remained uncertain for the foreseeable future.
• Clinical uncertainty refers to the unknown and
  unknowable aspects of critical illness.
• Families found it difficult to accept and adjust
  to sustained clinical uncertainty inherent in
  critical illness.
• Functional uncertainty describes aspects of
  managing clinically ambiguous situations.
• Functional uncertainty was used as a means to
  manage individuals or groups during critical
  illness for ones own functional gain.
• Ambiguity and remaining vague were the
  communication strategies.
• Functional uncertainty aims at preserving a
  degree of uncertainty and thus providing
  flexibility in the approach to critical illness.

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Families in ICU one space two worlds?

• Weve talked on and on about resentment on the
  families side but its a big problem. Relatives
  are a big problem from our point of view and they
  cause a lot of resentment from our side of it.
  But nobody seems to care about that. Everybody
  cares about how the families feel rather than how
  we feel.
• 
  (Intensive care nurse)
• You know, I really, really believe that people in
  intensive care, if the family can cope with being
  there and helping out, it can only be good for
  the patient, the family and staff.
  
• 
  (Susan, F 4)

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Conclusion

• One space two worlds the admission of the
  patient brings both worlds, that of the family
  and that of nurses together.
• ICU is the nurses turf (Heimer Staffen 1998).
• Do families matter? Yes!
  
  Study provides the evidence that underlines
  the importance of integrating the family into
  ICU.
• However, focusing exclusively on the needs of
  families marginalized the need of nurses to care
  in privacy.
• Way forward negotiated family care in intensive
  care under the leadership of nurses.
• Nurses must take leadership because
• Family care is part of nursing
• Nurses are the health care insiders while
  families are outsiders (power issues)
• Nursing is the only profession that is based at
  the bedside around the clock and is affected by
  the presence of families directly.

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and finally

• Many thanks for your time!