This document discusses supporting families living with multiple sclerosis (MS). It covers the impact of MS on family members, including increased emotional distress, social isolation, and changes to roles and relationships. Families experience ongoing adjustment challenges due to the uncertainty of MS. The presentation aims to provide a reflective space for professionals to consider working with families living with MS, addressing dilemmas and self-care. It promotes a resilience-focused approach, emphasizing families' strengths and supporting effective communication, coping strategies, and hope.

1. Supporting families living with MS
Dr Audrey Daisley & Dr Rachel Tams
MS Trust Conference
November 2018
Not to be reproduced without permission
of the authors
1

2. Welcome!
! Consultant Clinical Neuropsychologists
" NHS (Oxford Centre for Enablement) and private practice
(Oxford Neuropsychology Practitioners – ONP)
! Specialise in working with people who have acquired brain injury
and progressive neurological conditions, their families and carers
! Expertise in working with children affected by neurological illness
in a close family member; first NHS psychology service for
children set up by AD in 1995

3. Why a session on families?
! Working with families is a large part of our work
! Family adjustment plays an important role in the quality of life for the
person with MS (the two are interdependence)
! Key national policies support working with families:
• e.g. NICE (2014). Multiple Sclerosis: Management of Multiple
Sclerosis in primary and secondary care
• NSF for Long Term Conditions (2005)
This session is chance for us discuss family issues in the context of MS and
to consider the challenges and opportunities in this work

4. Today’s session will cover:
! What is known about the impact of MS on family members,
including children
! The principles that guide our work and practice
! Dilemmas and reflections on working with families
! How working with families can impact on us
! Ideas you can take forward in your own service

5. Aims for today:
! To provide you with a reflective space to share experiences of
working with families living with MS
! For you to leave feeling better informed, equipped and confident
to start or further develop your work with families
! For you to have considered the personal impact of this work and
to have ideas for self-care
! For our passion for this work to stimulate your enthusiasm and
kick start your thinking for what you might do next

6. First a bit of fun….
! Please think of a family from TV (eg from one of the soaps
or dramas), celebrity life, fiction or history that you would
absolutely not want to work with in your setting. It should
not be the family of a person you know.
! Discuss with the person sitting next to you what it is about
this family that would make them challenging for you to
work with.
! Then we will share ideas with the larger group

7. Some ideas to get you thinking

8. Impact of MS on the family
! Families living with MS are faced with a particularly unique set
of adjustment challenge and losses that require ongoing
adaptation (McNulty et al., 2004)
" Uncertainty a key feature (e.g. diagnosis, future level of
disability, prognosis) - may be one of the hardest things to
cope with (e.g. Bolland et al., 2012)
" Long term planning may therefore not be possible
" Symptoms (especially invisible ones; symptoms that wax and
wane) may be difficult to understand – e.g. may seem to
“come and go”

9. Impact of MS on family life
Families may also be dealing with:
! Financial pressures due to changes in employment status (for both
the person with MS and spouses/partners, e.g. Hakim et al.,
2009):
! Difficulties engaging in social activities, less likely to share
information, leading to social isolation (eg Bowen et al., 2010)
! Tensions within relationships and increased risk of relationship
breakdown (e.g. Pefleger et al., 2010; Glanz et al., 2009)

10. Impact of MS on families
Research and clinical work have highlighted that many family
members including children:
" Experience significant levels of emotional distress, including
anxiety and depression
" That these problems continue for many years after the onset
of the relative’s MS
" That for some these reactions worsen – not lessen - with time
" Family members warrant support in their own right

11. Specific issues for couples:
! Couples we work with tell us:
" Their relationship is vulnerable - Loss of intimacy and physical
contact, loss of life partner, co-parent, life plans, security,
sexual relationship ,
" They experience role changes - lover to carer, altered family
dynamics, shifts in the balance of power, reduced parental role
of pwMS
" Home can become like a hospital
" Worry about their children’s wellbeing but difficult to access
support

12. Issues for spouses/partners:
! Spouses experience higher levels of anxiety/depression than
general population and reduced QoL than other primary care
givers (Aronsen, 1997)
! They experience significant changes in many aspects of their
relationships/roles – e.g. change in own work role common (e.g.
Buchanan et al., 2012) and is often related to increased
caregiving role
! Partners report feeling unacknowledged, unsupported, isolated,
uncomfortable talking about MS with partner (e.g. Uccelli 2014)

13. Issues for parents of adults with MS:
! An overlooked group - limited research
" High levels of distress often reported – may not be considered
when family support is being planned
" Disruption to life plans – e.g. planning for retirement
" Often involved in providing care and emotional support
" May experience conflict with spouses / children of their child
" Feelings of guilt - want to take their child’s place
" Avoid sharing own emotional distress – wish to protect child

14. Issues for children
! Vulnerable to increased stress, anxiety and social isolation
compared with peers (e.g. Razaz et al., 2014)
! Confusion about what they are seeing i.e. what MS is, why
parent is changing, confusion re: invisible symptoms
! Conflicting emotional responses (e.g. anger, fear, pity and guilt)–
with lack of life experience to draw upon
! Parents may be distressed and unable to support children
! Lack of child specific support services

15. Issues for children:
! Increased responsibility for household chores, providing “social
care” common (i.e. Keeping the ill parent company); older
children taking care of siblings, e.g. doing homework, taking
siblings to school
! Children as carers – NO! children tell us they are fearful of caring,
do not want to be involved in care tasks but feel guilty not
helping!
! “the definition of a young carer is a family whose needs are not
being met” (Waites)

16. Is it all negative?
! No! Families vary in their reactions to MS - and many adapt well and
even thrive in the face of MS-related challenges (Eeltink and Duffy 2004;
Packenham, 1996)
! Adapting to life with MS can lead to positive shifts in lifestyle/values
(Bowen et al., 2011); deepen relationships, lead to feelings of
accomplishment /pride (Buchanan et al 2012); personal growth, re-
evaluation of life’s priorities, greater appreciation of life/health
(Pakenham, 2005)
! We also know that many children adjust well to parent with MS – can lead
to reported benefits such as increased maturity/empathy.

17. Which families might need our help more?
! Research findings can be conflicting; the relationship between MS
and family adjustment is complex – research doesn’t identify
simple links with MS-specific characteristics
! Many factors modify family members’ responses (whole spectrum
of practical/ psychological/ premorbid family issues influence
adjustment!)
! We do see synchronicity between adjustment of person with MS
and other family members (e.g. Pakenham, 2001; Janssens et al.,
2003; McPheters and Sandberg, 2010)

18. Research has found that families who do well…
# Effectively communicate with each other
# View shifts in roles/responsibility as opportunities to deepen relationship/
see life in different way
# Have a range of coping strategies they can draw upon
# Are able to maintain social roles and identity
# Have a strong and flexible sense of family identity –and adopting a team
approach/see as shared challenge
# Use humour/optimism
# Have access to MS specific support and information
# Have good social networks – engage in social groups
# The good news – we can influence most of the above!

19. In summary – despite the variation that exists
it is recognised that:
! Family members have information and support needs that:
" are ongoing,
" change alongside the illness,
" and are long term
! Recurring themes for families:
" Managing uncertainty - “navigating unchartered territory”
" Grief – current and anticipatory
" Constant process of change/readjustment
" Trying to live well while managing progression in MS

20. Understanding family reaction to MS?
Many models and frameworks have been proposed – e.g.:
! Stage models of adjustment and loss (Matson and Brooks; 1977)
! Stress and coping (Lazarus and Folkman, 1984; Pakenham, 1999)
! Biopsychosocial (recent overview by Wade and Halligan, 2017)
! Stages of change (DiClemente and Prochaska, 1998)
! Ambiguous loss (Boss, 2009)
! Family Systems Illness model (Rolland, 1994)
! Systemic (Maitz and Sachs, 1995)
! Resilience (Walsh, 2006)

21. Family models of illness:
# Provide different lenses through which to understand / view
the family experience of MS.
# Gives rise to different ways of working with families
# Each have strengths and weaknesses
# No one model that fully explains families’ experiences of MS

22. Case studies:
! Please split into groups and talk through the
scenario; please don’t focus too much on talking
about what you would do – but rather we would
like you to talk about your emotional reactions
and reflections on being faced with such a
scenario
! We will share reflections the the larger group

23. Reflections on case scenarios:
! Complexity
! Ethics
! No right or wrong answers
! Anxiety-provoking
! Challenges our own values
! Is this my role?

24. ! Everyone in the family will have been affected in some way
- but not necessarily in the same ways/ to the same extent
! Families have often been through a lot before they get to
us. Previous experiences of “help” may have been positive
(so they welcome you) or negative (so they reject you /
mistrust / ‘test’ you)
! Most people want their old life back and for us to make the
MS go away – helps to acknowledge this with compassion
Family sensitive practice-
some useful starting assumptions:

25. Some useful starting assumptions:
! Well informed people do better; well supported people do better
" However we need to carefully time information and offers of
support – be prepared for our efforts to sometimes be
rejected
" Take care to offer (and keep offering ) support again at a later
stage (families can quickly be labelled “difficult to engage”)
! In the long term the family ends up taking responsibility for the
person with MS
" They are typically still there long after we have moved on /
changed jobs

26. Some useful starting assumptions
! Families do not have your specialist knowledge; your expertise
and patience is needed in helping them understand their relative’s
MS and its effects
" They need to know what's normal for MS– because what they
are seeing is not normal for their relative and that’s all they
have to go on
" They will hold misconceptions about the illness, possible
treatments and its impact; Variability of symptoms poorly
understood “he can remember when he wants to”

27. Some useful starting assumptions:
! Most families will be fearful (it just might not come across that
way):
" They may instead present as angry, challenging, mistrusting….
" There is usually no where safe for them to direct this
anger….leaving us or their family members in the firing line
(be prepared!)
" Our mantra “when a family is causing a problem for us – they
are trying to solve one for themselves”

28. Some useful starting assumptions:
! Families have to be helped to take care of themselves to
effectively support their relative

29. Resilience:
our model for working with families
! Our core underlying approach is always guided by strengths
based resiliency models (Walsh 2006; Grotberg 1995 (children)
! Typical dictionary definition of resilience:
" “the capacity to recover quickly from
difficulties...toughness” (Oxford
English Dictionary)
" “bouncing back.....”

30. Resilience
! Walsh ( 2006):
" “ struggling well, effectively working through and
learning from adversity...and integrating the experience
into the fabric of individual and shared lives”
" Being able to withstand & rebound from life challenges,
BUT CRUCIALLY.. emerging strengthened & more
resourceful....

31. Resilience:
! Not just hardiness or bouncing back from a crisis
but...BOUNCING FORWARDS!

32. What does strengths based - resilience focused family
work look like?
! Puts emphasis on the relational context – the family (not the experts) as
central to recovery
! Focuses on strengths, solutions & possibilities and asks what assets, skills
and resources families bring to their situation
! It targets the key processes shown to be important in
enhancing family resilience: knowledge, meaning,
connectedness, communication and coping

33. Resilience focused family work
! Work focuses on
" altering what the MS means to families
" encouraging positive stories to emerge
" normalising distress
" decreasing negativity & blame
" increasing family bonding
" instilling hope

34. Supporting families -
some tips for getting started:
! Be well prepared – with information, resources, signposting details and
support for yourself (does anyone in your team have experience working
with families and children who can help?)
! Know your local policies on safe guarding and onward referral routes
should you be concerned about a family; what’s support options are for
children in your area?
! Know your limits – just listening is ok when we don’t have answers
! Please don’t start what you can’t finish (families tell us that concerns not
always followed up; difficult issues may be left to the end and then rushed
through)

35. Supporting families - the service culture
! Consider the culture / ethos of your service regarding working
with families.
" Family involvement valued. Encouraged ? Seen as essential? A
luxury?
" What policies would you need to develop in advance to support family
working (e.g. children allowed in therapy areas_
" Are children’s issues considered in the person with MS care plan?
" Therapy objectives relate to children, parenting & relationships
" Ongoing family focused training for MS teams

36. Supporting families - the environment
! Consider the physical environment of your work setting: is it family
sensitive / child friendly?
" IP service – ideally should include a family room on ward; no ‘no-go’
areas, avoid sharing of rooms for those with children, independent
living unit for family weekend time, baby changing facilities
" OP clinics – child friendly areas for families waiting, invite those with
families to attend at the start / end of clinic
" Home visits – are kids present? Do you explain what you are doing?

37. Helping families understand MS:
coping with symptoms and changes:
! Two main strands to this work:
" Helping families understand the person’s MS and supporting
them in getting to know the “new, changing ” person
" Understanding and coping with the partial loss of the “old”
person
Discontinuity between the old and new causes considerable
confusion and distress for families

38. Helping families understand MS:
! There are many useful publications from the MS Trust/MS Society
! However tailor made information that directly addresses particular
concerns, questions and situation is the most helpful starting point
" Not everyone will be on the same page
" Not every one will be ready to receive information
" Not everyone wants us to be honest with them
" Useful in dispelling myths/misunderstandings/hidden aspects
" Fine balance between giving factual, accurate information, managing
distress and helping families maintain some hope
" Ongoing communication– not a one off event

39. Helping families understand MS:
! Providing information can be complex and time consuming: start with
what they know already
" Ask about family beliefs about causes
! ask children directly if they think they caused it: nb. “maybe this
happened because I was naughty” (age 6)
" Provide explanations for MS symptoms
! these can often be misunderstood / misattributed by adults and
children especially ‘hidden’ aspects of MS
" Acknowledge the challenges and fear that uncertainty brings

40. Helping families understand MS:
! When giving information to children try to match to age/
developmental stage, emotional maturity
" Very young children need less detailed information. Address
practical/self-focused concerns (e.g. “who will pick me up from
school?”)
" Older children have greater understanding of notions such as
prognosis, deterioration, and dying. May want more detailed
information/ask more searching questions; important to check
with parents how honest they want you to be

41. Teaching families skills:
! Teaching families skills can enhance learning, help develop greater
appreciation for the challenges faced by the person with MS. Children
particularly like to be involved in therapy. You could facilitate:
" Child watching parent in PT (helps them see parent as capable, trying)
" Trying out equipment (demystifies, reduces fear)
" Being taught skills e,g using a communication aid
" BUT SKILLS TAUGHT ONLY for relationship maintenance
! Caution: it’s not a “must” – children must be keen to learn
! Skills not taught to children as alternative to paid carer
! No teaching of “skills” such as how to help parent onto toilet.

42. Helping families cope with loss, change and uncertainty:
! Helping families process and cope with the feelings associated with loss of
person with MS as they were (this work requires skill and experience)
! When families talk to us about loss it can be helpful to hold the Ambiguous
Loss model (Boss 1999) in mind:
" Loss associated with MS is NOT the same as a bereavement
" MS results for some in psychological absence of the person with MS
with physical presence (complex type of loss)
" It is a loss without closure
" Family ongoing sadness / distress is understandable (not pathological)
" Very painful work – only do this with training and support

43. Helping families cope with loss, change and uncertainty
! Help families face and talk about difficult facts about their
situation (e.g. uncertainty) and find new meanings and ways
forward
" e.g. Newly discovered personal strengths used for coping, new
meanings - “family closer now”, finding other ways of
connecting to the relative
! Normalising ambivalence and negative feelings and
acknowledging / exploring the contradictions
" I am sad but it’s ok to be happy sometimes
" I feel lonely and yet still connected to her

44. Working with the adults:
! Couples focused therapy to explore role/relationship issues
! Parenting focused support addressing issues such as:
" Supporting continued co-parenting
" How to support their children (helping couples agree on level of
openness and honesty etc)
" Explore emotional & identity issues that impact on parenting
" Encourage families to maintain routines as much as possible
" Encourage families to keep school informed
! Separate individual support for person with MS and for family
members as appropriate

45. Supporting systems around families:
! Supporting other team members to be curious about families, to
involve them and to understand family dynamics / functioning
(e.g. reframing “playing us off against each other” as appropriate
questioning and self-advocacy)
! Supporting schools to support children (school based counselling,
evidence to exam boards…)
! Close working with health and social care to safeguard against
children becoming carers, understand and manage risk.

46. Resilience building group work with children
! Resilience building day - “In the Know about MS”
" Emphasis on resiliency and children learning from experiences of
others – we teach “bouncing forward”
" Connect children in similar situations with each other
" Explore coping strategies for dealing with issues specific to MS such as
uncertainty and not knowing
! Conversations about resiliency to make a “tool kit”
" Personal strengths (I am....)
" External resources and role models (I have....)
" Coping strategies (I can...,)

47. Resilience toolkits:

48. Was the group helpful?
Children reported that:
# their knowledge about the causes and symptoms of MS had
increased
# they were better able to think of different things they could do
when they feel worried or upset about MS
# that they now knew more children in a similar situation
# Awarded a prize for innovation (QuDos in MS) – our plan is to try
to roll this out to other MS services around the country

49. Resilience-focused family work aims to:
! Normalise family / individual’s distress
! Emphasise that ‘good enough’ coping - is good enough
! Help families find meaning in the experience of MS
! Promote optimism and hope – “can-do” spirit
! Encourage families to focus on what they are doing well, for them
to draw on their existing strengths and skills to cope with the
roller coaster of emotions
! Help families live as well as possible with the MS

50. Working with families - Barriers and challenges:
! Not all MS services are able to work with families – there
are many reasons for this
! In small groups discuss the barriers or challenges to
undertaking family work that you have
" a) encountered within your role / service or
" b) that you might encounter should you undertake family work

51. ! Getting the importance of this work recognised
! No management support
! No history / culture of family working
! Lack of physical resources, time, support, funding and supervision
! Child & adult services fragmented – different people in different
places; whose responsibility to meet a need?
Service barriers:
This Photo by Unknown Author is licensed under CC BY-SA-NC

52. Personal / professional barriers:
! Perceived lack of skill / confidence in working with families,
especially children; lack of specific training within MS settings to
gain these skills (watch this space – we are developing some!)
! Concerns re complexity of the work, e.g. safe guarding issues
! Issues re professional ownership / territory: whose job is it within
the MDT to support children
This Photo by Unknown Author is licensed under CC BY-SA-NC
This Photo by Unknown Author is licensed under CC BY

53. Personal / professional barriers
! attitude & expectations – work with families (especially children)
may be seen as ineffective / pointless
! clash of interests (child protection vs supporting adults)
! some topics feel “off limits”/uncomfortable – outside your own
comfort zone (e.g. discussing sexual issues)
This Photo by Unknown Author is
licensed under CC BY-SA

54. Family barriers:
! Fear: of being judged as a family who are “not coping”, of up-
setting children
! Ignorance about / denial of effects on children
! No expectation of help due to previous experience of services
(e.g. acute phase)
! Unaware of availability of services that do exist……
! Mistrust of services
This Photo by Unknown Author is licensed under
CC BY-NC-ND

55. ! Working with families who are living with MS can be
" complex, emotionally challenging, exhausting, upsetting, frustrating,
de-skilling, anxiety provoking…and more
" often with a huge lasting personal impact
" can challenge your own values, beliefs and professional ethics about
how families should manage illness, receive support, care for their
children
" confidentially can be difficult; families may ‘push’ the boundaries
(because of distress / fear) or we become unclear about our limits
! Important that we seek support in this work
Looking after ourselves:

56. Looking after ourselves:
! Important that we “contain the containers”
! OCE – regular 1-1 clinical supervision (family-focused), reflective practice
groups for nurses who are on the ‘front-line’, professional special interest
group, regular in-house family focused training
! Seek supervision
! Be mindful of own experiences of illness/bereavement

57. What have we learned about working with families?
! Families want and need support but there are significant barriers
to them accessing services in the context of MS
! Focusing on family issues is the foundation for resilience
! You can do a lot with not very much - simple low cost imaginative
approaches have worked well. There was already a lot of skill
within our team – just needed bringing together
! Families have been our greatest teachers – listen carefully to and
share their stories of recovery and survival - there is learning for
us all in their experiences

58. We have also learned that….
! It’s not all bad for families:
" MS in the family does not always lead to poor outcomes
" Families display huge amounts of resilience
" Most children adjust well to parental MS
! Many identify positive outcomes for self e.g. maturity; tolerance;
a sense of knowing what’s important in life; increased compassion,
knowing they are emotionally ‘strong’ and can cope
" Living with and adapting to MS can lead to positive shifts in lifestyle/
values e.g. closer; do more together; greater appreciation of each
other; improved family communication

59. What could you do next?
! Will depend on
" Your experience and role within the organisation
" Perceived competence / abilities / confidence to work with
families and children
" Availability of time / other resources (appropriate environment
to see children in / budget for child equipment / toys)
" Opportunities for supervision / support and training
" Management support
" Service priorities
" The evidence you can present

60. What could you do next?
! Start small – but think big!
! Make your environment / clinic space more family and child-friendly (see
Children’s NSF for guidance)
! Know which of your clients have children and get to know them!
! Use clinic appointments to carry out a family “check-up”; always assume
family members may have new information/support needs so be proactive
and curious.
! Develop a resource library of family information

61. What could you do next?
! Form a family focused MDT working group to steer developments
" Audit numbers of people on your case load with MS who have
children (to begin to make your case) – retrospectively initially
" Gather data on family / children’s issues as they arise / target
specific issues
" Set minimum standards (e.g. information provision to all
families; documenting children’s existence in adult’s notes)
" Gather up info on local family and child support services
" Identify and meet local family support providers

62. What could you do next?
! Commit to a “Think Family” culture through development of family
focused training for your team by targeting:
! Awareness – raise profile “families and children are
affected too”
! Knowledge, skills & perceived control – “we can do this
work”
! Attitudes – “it’s important !”
! Include information about child and family issues if you teach on
rehab / MS courses / CPD .to raise awareness & stimulate interest

63. What could you do next?
! Submit your work to professional newsletters, journals,
conferences
! Social media is a useful source of information, networking and
support (Twitter, Facebook) – follow Rachel and I on Twitter and
LinkedIn and see who we follow and connect with them. See
YouTube for MSTV (MS Trust)
! Apply for grants for specific project work (again start small, e.g.
resource library for families – and work towards larger projects
such as funding a family counsellor)

64. What could you do next?
! In your evaluation materials there is a card on which – if
you choose – you can write down one thing (or more!) that
you’re going to try to implement after today.
! Write it on the card and put in the envelope provided with
your name and work address on it.
! We will contact you in 3 months time reminding you of this
and asking how you are getting on implementing your
ideas– and any barriers encountered

65. And finally :
! MS can have a devastating impact on some families/some
family members – there is an urgent need for the
development of responsive family support services
! Resilience focused interventions can help families “struggle
and live as well as possible”
! Many families manage the challenge with grace, dignity,
humour, love and strength - we must learn from their
experience when planning services

66. Questions / comments?
Thank you for listening and completing the
evaluation materials!
Contact details: drrachel.tams@gmail.com
audrey.daisley@yahoo.co.uk