The Family: A Help or Hindrance
to the Rehabilitation Process?
Dr Anita Rose
Consultant Neuropsychologist &
Director of Clinical Service
Outline
• Family Involvement
– What is it
– Need for it
• Empirical evidence
– Reasons to involve
– Barriers
• How Titleworth have responded
• Family involvement in Acquired Brain Injury
(ABI) rehabilitation is a developing area
• Services more aware of the need to involve
family and working towards ways of
developing involvement
• Anecdotal reports and opinion papers suggest
ways that family involvement might improve
the rehabilitation outcomes for patients (Tarvin,
1995)
• Recent government policy documents have called
for more focus recognising the expertise of the
carer and greater involvement of the family in the
rehabilitation process after ABI
– Caring about Carers (DOH, 1999) - “helping carers is
one of the best ways of helping people they are caring
for” (p6)
– National Carers Strategy (DOH, 2008) states that by
2018: “carers will be respected as expert care partners
and will have access to the integrated and
personalised services they need to support them in
their caring role” (p9)
What could family involvement mean in ABI?
• Determine the success of the transition phase from
hospital to home
• Facilitate the carryover of rehabilitation strategies to
compensate for cognitive difficulties
(Fleming, Shum, Strong & Lightbody, 2005; Turner et al., 2007).
• Potentially reduce the length of time required in
hospital
• Reduce costs of rehabilitation
(Kalra et al., 2004)
• Resolve issues related to family adjustment (for
example when a family member may have unrealistic
expectations regarding their relatives’ recovery)
What does family involvement mean?
• Very varied when look at empirical literature
and service documentation, includes:
– involvement in goal planning
– acting as a co-therapist
– “otherwise involved”
– Involved in therapeutic activities
– involvement in discharge planning
• Few guidelines available on how clinicians should
involve families in goal planning (Levack et al 2009)
• A recent review of goal planning in the rehabilitation
centres in the United Kingdom, found that carers were
not always routinely involved despite national
recommendations (Monaghan, Channell, McDowall & Sharma
2005)
• Family involvement does not always happen in practice
and services may only pay lipservice to this despite the
recommendations in government policies (Levack et al.,
2009; Brereton & Nolan, 2002; Monaghan et al., 2005)
• Important to determine what factors may facilitate or
prevent families’ engagement or involvement in order for
rehabilitation services to address these and improve the
consistency across services.
Inconsistencies between staff and family
perceptions
• Shaw et al. (1997) found that the staff and family
members differed in their opinions regarding
family involvement.
– Agreement that information should be shared, but
differed in opinions
• family involvement in treatment planning
• involvement in therapies
• regarding education – in particular families felt that the
education should be more specific to their relative’s
condition rather than more general information
Recognition of /lack of recognition of the
carers’ expertise and knowledge
• Brereton and Nolan (2002) identified the relationship and
communication between staff and families as a potential
barrier or facilitator to family involvement
– Families expressed a wish to be more involved in their relatives’
care
– reported that they actively made attempts to form partnerships
with health professionals in order to gain confidence and
acquire skills to be able to carry out care activities with their
relatives
– these attempts were not always acknowledged or were rebuffed
some families reported that they felt they were intruding on
professional territory when they tried to get involved
– Families also expressed a need for their knowledge to be
recognised and valued
Family involvement in Rehab Therapies
• One study investigated physiotherapists
perceptions of family involvement in the
rehabilitation process. (Ryan et al. 1996)
• Four main factors that impeded:
– Family
– Therapist
– Healthcare Organisation
– Patient
• Other factors included:
– Families availability/flexibility
– Cognitive skills
– Financial status
– Emotional health
– Relationship with patient
– Unrealistic expectations (particularly of family)
– Experience and confidence of therapist with involving
family
• Galvin, Cusack and Stokes (2008) found similar results
Family involvement in Goal Planning
• Involving family members in decision-making processes
such as goal planning can make the family more willing
to engage in the rehabilitation process (Levack, Dean,
Siegert & McPherson 2009)
• Family as an integral part of the goal planning process
provides an opportunity to families about
rehabilitation principles.
• Early discussion of goals could help to prevent conflict
from arising at the stage of discharge and to aid the
development of realistic expectations of recovery and
emotional adjustment
• Has to be acknowledged there are barriers to family
involvement:
– Family members had their own agendas
– Expectations were unrealistic
– Clinicians feeling have to limit family involvement, or avoid
engaging with the family at all to protect the patient
• Overall research indicates that clinicians are more
oriented to addressing the needs of patients rather
than the family
Family involvement in discharge planning
• Relatives and health professionals may have
different expectations regarding goal setting
(Almborg, Ulander, Thulin and Berg 2009)
• Therefore there is a need to develop more
effective discharge planning procedures to
include provision of information so that they can
be more involved in the rehabilitation process
• Services may lack effective practice for involving
families
Conclusion of Empirical Review
• Some evidence, albeit limited, regarding the effectiveness of
family involvement in improving the outcomes of their relatives
• There is a need for more high quality research to prove its
effectiveness and to ensure that family involvement is seen as
important by all parties and incorporated into routine care
• A need for services to address staff and organisational barriers
• A need for training and education to change attitudes and
practice in working with families and accountability for ensuring
family involvement in routine aspects of rehabilitation
• Barriers to carer involvement could also focus on addressing the
needs of families, who may feel that they lack the skills to make
a meaningful contribution, which could therefore limit their
engagement and involvement in their relative’s rehabilitation.
Clinical/Service Implications
• Process of rehabilitation for neurological
patients can place demands on family
• Family adaption in chronic illness or injury has
been likened to “navigating uncharted
territory” (Steele, 2005)
• Carer burden and strain “high level”
• Divorce/ Separation very high (Webster et al., 1999)
– Although research in 2007 indicates this might not
be higher than generic population (Kreutzer et al.)
• Adjustment to traumatic and acquired brain injury
tends to be more demanding for spouses because
the person who returns home from hospital can pose
specific difficulties (Serio et al, 1995)
• Involving families in Rehabilitation of their loved
ones can help aid adjustment and outcome
• Providing intervention/support for families very
important
• Responsibility to educate providers and
commissioners in need to “provide” for family
members as an vital part of rehab process
The Titleworth Experience
• It was acknowledged there is a need for the
service to take more active steps to:
– Actively involve all family members, significant others
etc in care and daily life of each resident
• Directly
• Indirectly
– Actively manage family expectations to avoid the
extremes of optimism and pessimism
• Education
– Formal
– Informal
– Actively manage family adjustment to ABI
• Therapeutically
• Practically
• Educationally
– Actively engage commissioners and providers in
understanding the need for support of families
• Discussions at referral/admission time
• Reviews
• Changes of residents’ needs
How do we do it?
• Family meetings
– Friends of Mulberry
• Open door policy
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Access to manager, neuropsychologist, staff
Meal times
Family parties
Activities
Reviews, goal planning, discharge planning
Resource files
Education
Research
Dealing with Inconsistencies
• Empirical evidence highlights this as a major issue
• Experience was miscommunication/lack of
communication was evident at times
• Action:
– Speak to families at point of referral (regardless of whether
referral goes active)
– Invite families for a visit (regardless of whether referral
goes active)
– Prior to admission involve families in plan of treatment
• gain information about enjoyable activities etc
– Involve in therapies if resident and family happy to be
• Teach strategies e.g. physio
– Involve in appointments
• If not possible written record provided
– Open door
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Families can visit at any time
Encourage open discussion with all staff
Comments Book
Regular surveys
Family meetings
Involvement in menus, patio planning etc etc.
– Invited to ALL goal planning and review meetings
– Any concerns immediate phone calls
• Families are reporting feeling significantly more involved
and feel they have open communication channels and
that the previously miscommunication issues no longer a
problem.
Recognition of Carer expertise
• “By 2018 carers will be respected as expert
care partners and will have access to the
integrated and personalised services they
need to support them in their caring role”
National Carers Strategy (DOH, 2008)
• Acknowledged by families often their opinion
not considered
• Families of residents felt this not a particular
issue however changes made
• Action:
– Speak to families at point of referral (regardless of whether
referral goes active)
– Invite families for a visit (regardless of whether referral goes
active)
– Prior to admission involve families in plan of treatment
• gain information about enjoyable activities etc
– Any change in resident e.g. behaviour, compliance etc.
speak to family if unable to communicate with
resident
– Best Interests meetings
– Listen to concerns
– Care Plan
Involvement in Rehab Strategies
• It is recognised there are a number of barriers
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Availability
Desire
Organisational
Therapist
• Action
– Willingness to change therapy time to accommodate
family
– Psychotherapy for family
– Family therapy
– Providing support to families when go out
• Very detailed written leave guidance regardless of length of leave
• Sending staff
Involvement in Goal Planning and
Discharge Planning
• Recognised that to enable engagement and address
unrealistic expectations important to involve family
• Action
– Invite to all meetings
– Willingness to accommodate at a time suitable (although
barrier can be external agencies not so willing/able)
– Accommodation can be sourced if coming from a distance
– Minutes and reports sent out within 48hrs
– Requests for information prior to meeting if not able to
attend
– Indirect education provided about ABI via GP meetings
Education Programme
• Research and own investigation highlighted education
need around own family member as well as/as
opposed to general
– Open door attitude
– All resident meeting
– Have resource files and documentation always available to
families to help with understanding of their loved one’s
difficulties
– Modular training so all staff confident in providing
– Family module to be run
– Indirect modes – general conversations, therapy times,
family meetings
– Current research projects
How we see our role
To help our residents
and families navigate
uncharted territory