Wednesday, January 26, 2011

Resource for Kids...

Serious compassion fatigue, like other forms of posttraumatic stress and burnout, has a ripple effect on the sufferer's circle of family and friends. Some children are particularly sensitive to this CF fallout.

PTS specialist, Aphrodite Matsakis, (1996), describes the impact this way:

"... the major problems experienced by children in homes
afflicted by PTSD are emotional. If ... PTSD expresses itself
in irritability, outbursts of temper, frequent flashbacks or erratic
behaviour, the children are often frightened and anxious,
not knowing what to expect next."

Children can also grieve as the result of a CF parent's distancing and emotional numbing.

And, while many spouses of compassion fatigued helpers are highly effective parents, some say that they can become so focused upon, and depleted by, their partner's pain that they are less emotionally available to their children than they would like to be.

A result of this stress and distress is that children may cope by suppressing their own feelings, believing that no one will listen or that their emotional responses will make things worse.

One way to counter this kind of reaction is to provide children with information about their feelings and about their wider safety net of helpers. There have been several good children's books written about feelings over the years, but this week I came across a great British website designed for children aged 7 - 10.

The website,, was set up by Tavistock & Portman NHS Foundation Trust, a mental health trust based in Camden, North London. Here, Cam and his team of sock puppet friends, each named for a different feeling - Happy, Sad, Calm, Confused, Angry, & Sad -, read stories and talk about feelings, learn a feelings song, explore common emotion-laden problems and learn to make their own sock puppet with whom they can share their feelings.

While not specifically focused upon CF or PTS affected families, Cam's Den leaves children with the message that there is always someone available to listen and to help with difficult feelings and problems. (In this case, the NHS mental health clinics, so parents here would have to provide alternate information for their area or country.)

There is also a section for parents, explaining how to recognize emotional problems in their children and when to seek help.

Annabel Venning, a journalist who reviewed the site for one of the British newspapers, reported that her children, aged seven and five, "... were immediately captivated by the puppets while the stories were a great springboard for discussion. After one, about a new girl who is ostracised at school, both vowed to make sure that no one got left out at playtime in the future."

Why not take a look and see if it would be helpful for your kids?

Monday, January 17, 2011

A Problem of Privacy ...

Have you ever been frustrated by your inability to give (as a helping professional) or receive (as a family caregiver) patient information needed to enhance family caregiving? It is becoming a more frequent problem as family caregivers are asked to take on more responsibility for ill or disabled loved ones at home.

In a 2010 Nursing Ethics article entitled, Information Disclosure to Family Caregivers: Applying Thiroux's Framework, John Rowe of Open University, UK, makes an arguement for " ... seeking a re-balance so that more consideration is given to the rights of caregivers as they are faced with taxing responsibilities". He does not advocate giving open access to patient information but does suggest that we begin to see "the patient" as the family unit and provide family caregivers with information that will directly affect their lives.

Mr Rowe describes the information-sharing problem thus:

Willingness to share information is central to an effective relationship between practitioners and family caregivers. Active and informed involvement of family caregivers can be vital to recovery, even where there is conflict between the needs and wishes of service users and those of their caregivers. For example, a service user's care plan may stipulate attendance at a day centre to take part in occupational or recreational activities and foster community participation. The caregiver is often required to urge attendance, especially when the service user lacks drive and motivation, and believes that he or she already engages in purposeful activities outside the social care system. The caregiver may use this "free" time to shop or see friends and so gain a secondary benefit from the service user's attendance at the day centre. At a day centre review meeting in the absence of the caregiver, the service user's wish to stop attending may be agreed. In this situation the desires and wishes of the service user and those of the caregiver are in conflict.

In the circumstances given above it is central to the service user's recovery plan to attend a day centre, but the service user would not do so without the active urging of the caregiver. The caregiver therefore has a pivotal role in the service user's recovery, but not it seems in the decision-making process. Rethink, a mental health charity and campaigning organization, reported that many practitioners use the principle of confidentiality to block sharing of information, thereby excluding caregivers from care planning and other discussions, with the relationship between caregivers and professionals being the actual root of the problem.

Many caregivers subsequently feel unsupported and excluded from decision making. "Confidentiality smokescreens" thus make things worse: practitioners find it easier and safer to say nothing, and do not take into account caregivers' rights to basic information to enable them to fulfill their caring role. This makes matters worse for caregivers because they are prevented from understanding mental health issues and how to deal with the challenges they encounter and, frequently, service users also suffer.

After using Thiroux's Ethical Framework to provide guidance for practitioners facing these confidentiality problems, Mr Rowe concludes with these words:

An ethical case for disclosure would have to include the nurse as part of the relationship triangle, with the nurse committed to engagement while seeking what is a good outcome. This draws into question the role of the nurse: whether the nurse is for the service user, or for the care context as a whole, with the context including all the major players in practice situations. This latter approach would contradict the accumulated legal and professional rules that still focus heavily on respecting patient autonomy and the rights
of confidentiality.

There needs to be a reappraisal of the rights to confidentiality in situations where one person's rights are supported and upheld at the expense of the rights of others, especially for those who provide significant support to enable a cared for person to have a better life.

Better guidance on when to breach confidentiality that recognizes the level of dependency and the relationship between caregivers and service users is needed. This guidance should acknowledge the ethical imperatives for a specific course of action, taking into account what is good in any particular situation to complement guidance on what is bound by law, professional codes and health care obligations. Nurses should be guided to look for what matters, not what is prescribed.

That helping professionals are looking into the impact of withheld information upon the stress level of family caregivers is encouraging and may contribute to a lessening of vulnerability to compassion fatigue in both groups - by reducing moral distress on the part of helping professionals and by lessening the experience of helplessness in family caregivers.

Thursday, January 6, 2011

A Happy and Hope-filled New Year ...

There is no medicine like hope,
no incentive so great,
no tonic so powerful
as expectation of
something tomorrow.

Orison Swett Marden

A Happy and Hope-filled New Year to each one of you who supports or cares for others, be they patients, clients or loved ones.

Hope is one of the great gifts of a new year. The unwritten days spread out before us - wide open, filled with opportunities and possibilities.

Sadly, the stress of caring for others can diminish hope in many helping professionals and family caregivers. In a 1999 article published by "Health Care for the Homeless Clinicians Network", called Coping With Stress: Creating and Maintaining Hope, ten clinicians working with the homeless from different parts of the US were asked what internal and external sources of hope and inspiration gave their work meaning and how they sustain and renew hope in themselves and others. Here are a few of their answers:

Sources of Hope:

1. Self Knowledge: Knowing, trusting and depending upon your personal strengths.

2. Belief Systems:

- Religious - belief in doing the work through, and sustained by, a Higher Power.
- Philosophical - belief in a philosophy of compassion or The Golden Rule.
- Theoretical - belief in a solution-based, harm reduction model of care.

3. Care Recipients:

The inspiration that comes from the recipient's resilience, creative responses to challenges and appreciation of even the most minimal help.

4. Colleagues:

Colleagues' commitment, empathy, support and lack of condemnation.

5. Mentors & Role Models:

Both the desire to model the values of a beloved mentor and the hope to be a good mentor oneself.

6. Family History:

Working to help people overcome challenges experienced by our own families.

Sustaining & Renewing Hope:

1. Balancing work with personal time:

- "You can't give all the time and stay emotionally healthy."
- "You need time with younger people. They're the ones who renew my hope."

2. Seeking a broader perspective:

- Learning new things, trying new aspects of the work.
- Connecting with others doing similar work at a regional or national level.
- Travelling to other areas to see how they are approaching the work.

3. Taking time out to reduce stress:

- Exercising 30 minutes / day at something you really enjoy.
- Daily meditation or centering prayer, often during your mid-day break.
- Spending time in nature and noticing the endless hope & renewal of the seasons.

4. Having faith that you are making a difference:

- Becoming more philosophical about the work. Taking sustenance from beliefs like the old Chinese proverb that says, "A drop of water, very small and very soft, falling in the same place can make a hole in a rock that is very large and very hard." Or like Mother Theresa's belief that, "God has not called me to be succsessful. He has called me to be faithful." Or like the guidance at the core of Niebuhr's Serenity Prayer - to change what you can, to let go of what you can't, and to be wise enough to know the difference.

5. Focusing on the "small" positives:

- Listening with respect, touching the "untouchable", offering the basics of warmth, presence, focused attention.
- Celebrating and highlighting the baby steps forward with affirmations and creative rituals.

6. Reading inspirational materials:

- Pieces like Desiderata, Native American Prayer, or Water Balloon Fight or stories from your own favourite inspirational writers.

Now, for those of you family caregivers who face new losses every day, the notion of hope can be a distant and painful one at best. For you, I share again what I learned through years of caring for my husband - that the way to maintain the experience of hope, with its sense of destination and its fuel for continuing the journey, is to be willing to change what it is that we hope for.

With each loss we must grieve then reorient ourselves to a new, and often smaller hope - one more remission, one more vacation, one more Christmas dinner, one more night without pain. This can seem a poor substitute for the kind of hope we used to experience but it is still hope and it will carry us through the tough times much better than having no hope at all.

So, for all of you, may 2011 be a year of hope with all the strength and energy that hope can provide.