Hopework: Survival stories from the C.O.U.R.A.G.E. program ~ Families with children who have cancer by Linda Moxley-Haegert

Posted by on Aug 16, 2014 in Friday Afternoon Videos | 6 comments

Hopework: Survival stories from the C.O.U.R.A.G.E. program ~ Families with children who have cancer  by Linda Moxley-Haegert

Most parents would never dream of having a child diagnosed with a life threatening illness. When that happens it most often feels like a nightmare. Community narrative therapy practices provide many possibilities to help turn this nightmare into a ‘hopedream’. Families in Montreal, Canada are doing a great deal of ‘hopework’ in order to find their special achievements, knowledges and resources and voice them through ‘stories of survival’, stories of mastery, and coping. To do this a bi-lingual (English and French) hospital community was developed called C.O.U.R.A.G.E. COURAGE means: Using Cancer as an Opportunity to Unite and share Resources in an Amicable Group setting that provides Encouragement. This presentation illustrates details of their experiences and the narrative practices used. Examples of their words, collective documents and pictures are included to facilitate understanding. Their words are shared with other families through a living document, a video tape, comic strips, art work, song and an e-mail virtual group.

Dr. Linda Moxley-Haegert, who has practiced narrative ideas since 1991, works as a clinical psychologist and narrative therapist with an oncology/haematology and a palliative care team in a children`s hospital in Montreal, Canada and has recently been involved with much community work training provided by the Dulwich Centre.

We’re delighted that this video presentation is available in both English and in French. Please note, the sound quality in the recording is not perfect. We have included below a pdf of the document that is read aloud by Linda towards the end of the presentation.

La plupart des parents n’ont jamais imaginé avoir un enfant atteint d’un cancer. Les parents et les enfants ont parfois l’impression de vivre un vrai cauchemar lorsqu’ils reçoivent ce diagnostic et face aux traitements. Les pratiques narratives communautaires offrent de nombreuses possibilités pour aider à transformer ce cauchemar en rêve d’espoir. Je vais vous présenter quelques pratiques que j’ai utilisées auprès de ce groupe de familles. Il y a plusieurs familles à Montréal, au Canada, qui font beaucoup de travail pour donner de l’espoir afin de trouver les réalisations particulières qu’elles ont faites, les connaissance qu’elles ont acquises et les ressources qu’elles ont trouvées et qu’elles ont partagées afin de montrer leur capacité à maitriser, à s’adapter et à survive à ce cauchemar. Pour ce faire, nous avons développé un programme bilingue (français et anglais) appelé C.O.U.R.A.G.E. Le Cancer est une Opportunité de s’Unir et de partager des Ressources entre Amis réunis en Groupe pour s’Encourager. Linda Moxley-Haegert, psychologue affectée à ce programme, présente le travail sur l’espoir, sur le courage de ces familles en utilisant des exemples d’histoires, des documents collectifs, leurs projets d’art, des images et la voix d’une adolescente pour en faciliter la compréhension.

Dre Linda Moxley-Haegert, qui a utilisé les pratiques narratives depuis 1991, travaille comme psychologue et thérapeute narrative avec la communauté d’oncologie et soins palliative à l’hôpital de Montréal pour enfants. Plus récemment elle a assisté aux ateliers des pratiques narratives communautaires qui sont présentées par le centre Dulwich en Afrique.

Further reading (free to download)

English

Hopework: Stories of survival from the C.O.U.R.A.G.E program – families of children diagnosed with cancer by Linda Moxley-Haegert

Excerpt from children’s document (as read on video)

The children’s collective document (full version)

Française

Croire

Document collectif des enfants

Published on January 24, 2013

6 Comments

  1. First of all I want to say how touched I am at the richness of your responses. I was in a no internet location on last Friday (yes there are still some parts of this world where one cannot get internet – one is a cabin in northern Quebec with two mountains on each side of it) so could not be involved at the moment when some of you were watching and the questions are also so rich that I wanted to take time to respond. I will go one at a time.

    Premièrement, je voudrais dire à quel point j’ai été touchée par la richesse de vos commentaires. Je n’avais pas l’internet à l’endroit où je me trouvais vendredi (oui il y a toujours des places dans le monde où on n’a pas d’internet ! Par exemple, dans le nord du Québec entre deux montagnes) et je ne pouvais pas m’impliquer au moment où vous avez regardé le film. Aussi, vos questions sont si riches que je voulais beaucoup y réfléchir avant de vous donner mes réponses. Je vais le faire pour une personne à la fois.

    Loretta – I will certainly tell the families of your appreciation that they would be willing to share their stories and their ideas with you all. I can do this easily (except for the need to translate into French) because of our virtual group. In this format, I write up all the ideas that come up in each of the several groups we have and send these ideas to everyone on my virtual e-mail list.

    Loretta. – je vais surement dire aux familles à quel point vous avez apprécié qu’ils partagent leurs histoires et leurs idées avec vous. Je peux facilement le faire (sauf pour le besoin de traduire en français qui n’est pas aussi facile pour moi) parce que nous avons ce groupe virtuel. De cette façon, j’écris toutes les idées que je reçois de chacune des personnes qui participent aux différentes groupes et projets que nous avons, et j’envoie ces idées aux autres qui n’étaient pas capables d’être présents.

    I loved your choice of their words which touched you. Such as `What we can learn from having cancer’, and the one dad`s remark` Maybe this experience would help his child understand better other kids, because she planned to be a teacher’. I am glad that these words could affect you in your work by reminding you that we bring our life learnings to our work and also that the families we meet can support and encourage others because of their insights. I would add that they can help us as well in so many ways as not only do we all have our work and the challenges it could bring us, we have our own lives and our own personal challenges. I find I often bring the wisdom from these families into my own work and personal life and for that I want to thank these families very much.

    J’ai beaucoup aimé votre choix, Loretta, des mots qui vous touchaient. Ces mots comme – Qu’est-ce qu’on peut apprendre en ayant eu le cancer’ et cette remarque dite par un père à son enfant: ‘Peut-être cette expérience va t’aider à mieux comprendre les autres enfants parce que tu as l’intention d’être enseignante’. Je suis contente que leurs mots puissent avoir un impact sur votre travail parce que vous allez vous souvenir que nous pouvons utiliser nos apprentissages de vie dans notre travail. Et aussi que les familles que nous avons la chance de rencontrer peuvent donner du soutien et encourager les autres familles.

    Je voudrais ajouter que les familles peuvent nous aider de beaucoup d’autres façons parce que nous avons toujours les défis à surmonter au travail mais aussi dans notre propre vie. Je trouve que je peux souvent utiliser la sagesse de ces familles dans mon travail et dans ma vie personnelle et pour ça je voudrais les remercier.

    Lorreta, you were reminded of the value of group work and of living documents in finding connection, hope, support, and the knowledge of not being alone. I get such lovely feedback from the members of these various groups and projects which go on throughout this year program and this feedback really supports me in the work that I do. I want to thank these members of our COURAGE community for these comments.

    Loretta, vous avez été rappelée de la valeur du travail de groupe et des documents vivants (les livres dans la clinique et sur l’étage où les enfants sont admis à l’hôpital) dans la recherche de connexion, d’espoir, de soutien et de la connaissance que vous n’êtes pas seul. Je reçois beaucoup de commentaires positifs des membres du groupe et des projets qu`on fait ensemble pendant l’année du programme COURAGE et ces commentaires me donnent beaucoup de soutien dans le travail que je fais. Je voudrais dire merci aux familles de notre communauté COURAGE pour ces commentaires.

    You asked how I find the time to do it, with the rewards that I get back from these courageous people I get such strength and energy. I also have patience – so making the film has taken over one year, the comic strips are ongoing with the help of our art therapist, the blogging and virtual group gets done often on the week-end. It is a juggling trick to meet with every family and it is through these narrative community ideas that it can happen. I do facilitate all these events but have gotten a really rich psycho-social team around me involved (these include art therapist, music therapist, child life specialists and social worker as well as various students.

    Vous m’avez demandé comment je peux trouver le temps de faire ce travail; je dirais que c’est en voyant le courage des gens que je trouve facilement la force et l’énergie de le faire. J’ai aussi, heureusement, beaucoup de patience. Le film par exemple est dans la deuxième année de sa création, les bandes dessinées sont travaillées par un art thérapeute, les chansons sont travaillées par notre musicothérapeute. J’ai une belle équipe pour m’aider. En ce qui concerne les documents collectifs et les notes de nos groupes, je m’en occupe souvent pendant les fins de semaine. Il s’agit d’un acte de jonglerie de voir chaque famille et c’est en utilisant les approches narratives communautaires que je peux le faire. Oui, je facilite chaque groupe, mais comme je vous ai dit j’ai une belle équipe autour de moi qui s’implique beaucoup (nous avons aussi une travailleuse sociale qui est très intéressée par la méditation en utilisant les pierres, les psychoéducateurs) et aussi souvent les étudiants.

    You wanted to know more of the prescription for happiness. Since I write up each COURAGE day group responses, I just happen to have their words for you and will add them to my reply to you.

    Vous voulez en savoir plus sur les ordonnances pour le bonheur. Quand je pose mes questions du COURAGE, j’écris les réponses pour notre groupe virtuel. Voici leurs mots.
    Groupe COURAGE Group – jour/day

    A Prescription: How to Keep Happiness Alive

    – We keep happiness alive by thinking positive. Looking forward to Christmas and spending time with our family and always smiling.

    – Think positively
    – Stay in touch with friends
    – Play activities/sports

    – Being positive about everything
    – Hanging out with friends
    – Being around good people
    – Shopping
    – Going to the movies with anyone
    – After hospital go eat brunch with your mom and not going back in school
    – Fridays
    – Being with family/people that make you smile and laugh
    – Getting tickets for hockey games!
    Having hope

    – Was so hard not to feel depressed (No family. Relapse and transplant)
    – Looking forward to being finished
    – When finished- go back to school
    – Hoping that everything will be fine
    – Felt hopeful
    – Belief in God- helped mom
    – Support from my mom

    – Constantly being around positive people
    – Talking about the illness only when necessary
    – Staying focused on finding solutions to problems
    – Find an activity to keep your mind busy
    – Keep a positive goal in mind
    – Constantly remind yourself of the light at the end of the tunnel and that the situation is only temporary
    – Do not be afraid to ask for help
    – Participate in activities

    Les Experiences Enrichissantes de ma vie

    Billets et est alle a Disney sur glace
    Patiner sur la glace
    Se baigner a la piscine avec cousins et cousines
    Les cadeaux de reves d’enfants
    Quand je vais chez ma cousine
    Celebrer le jour de ma fete
    Quand il est alle a Val David avec ma tante
    Parler avec sat ante on Skype
    Quand j’ai passé une nuit avec mon onlce
    Quand j’ai su que jallais a la classe Neige
    Quand tu as rencontrer ton meilleur ami Victor
    Quand j’ai passé Noel avec ma tante
    Quand maman et Jacob avons fait le sapin de Noel
    Quand on est alle au festival de jazz
    Quand j’ai ete a New York
    Quand j’ai su que j’aillas en Floride
    Quand tu as su que ma tante Emilie etait enceinte
    Quand j’ai ete au bain tourbillon
    Quand j’etais au chalet avec maman
    Quand j’ai su que j’allais avoir un Ipod touch
    Quand je vais a la bibliotheque
    Me scours de natation
    Cours de karate et hip hop
    Quand je vais chez mes amis

    Quand mon enfant a commence la remission
    Quand mama est retourné au travail
    Maman a eu un nouveau poste
    Quand mama est avec les amis et la famille

    Performing on Stage
    Feeling loved
    Spending time with loved ones
    Finding things to be passionate about
    People appreciating what I do

    That I got better
    All the presents
    Mick Cammalleri came to see me
    The good care from Doctors and Nurses

    S’occuper d’animaux (souris, oiseaux, poisons, chat, chien)
    Profiter des périodes de repos (repas en famille, massages, natatation, etc)
    Être d’avantage présent avec autres
    Retour aux études

    You gave me something special in your well thought out responses and I loved the idea of thinking about how meaningful it must mean to the person who wrote the songs, or poems. We had a wonderful experience of managing to get a group come to the home of a very sick teenage girl and personally sing the lyrics of `Holding my head up high` (when it is bald due to cancer treatments). They showed with their generosity how much it meant to them that their words inspired this girl.

    Vous m’avez donné un cadeau spécial avec vos réponses bien pensées et j’ai adoré l’idée de penser à ce que ça peut signifier pour les écrivains de chansons ou de livres de savoir que leurs mots ont touché le vie d’une autre personne en les aidant à gérer leur vie avec le cancer. Nous avons eu une belle expérience quand nous avons invité un groupe de chanteurs à visiter une fille très malade dans sa maison et à chanter sa chanson favorite (tenir ma tête haute) (quand on a perdu les cheveux à cause de la chimiothérapie). Ils ont montré avec leurs actions de générosité à quel point il était important pour eux que leurs mots soient une grande inspiration pour cette fille.

  2. Hi Linda

    I was interested in the topic and title of your presentation ‘Hopework’. I am a ‘generic’ social worker and just recently I have received a flurry of cancer related referrals. I work with adults rather than children so most of these involve older people who are caring for an adult relative with cancer, and are asking for assistance as the caring role has become more demanding and restricting as the cancer is reaching ‘terminal’ stage.

    It is difficult for them to hold onto hope in this situation. so I was interested in listening out for what hopework might be like for older adults in this situation. I noticed that the parents you were seeing were asking for a support group, and realised that the people I have been seeing are expressing isolation (even if they have family, and have connections in the community).

    I have used the Tree of Life with adult or adolescent groups before with varying responses, but listening to your video has promted me to re-think how this can be used in situations in which hopelessness, stress and exhaustion seem to be taking over (and consequently helplessness is waiting for its opportunity to engulf the worker).

    So thank you. Your video has really got me thinking.

    Arlette

  3. Hi Linda

    Thank you for your very interesting presentation. The issue of children having illnesses, particularly terminal illnesses, is very personal to me. That is because I witnessed the decline and death of a nephew and a niece – two of my brother and sister-in-law’s children. Both my brother and sister-in-law are carriers of a genetic disorder, and this means that they have a 25% chance that any child they have will die before the age of six months due to a failure of their musculature and respiratory systems to develop. Fortunately, they have four healthy surviving children, for which I am and I am sure they are very grateful for.

    My brother and his wife did not have a narrative group to attend in order to get support, but they did find some support from members of their local church. Furthermore, because they also had some difficulties with some of the members, particularly some of the leaders of their local church, they had a blessed distraction from their sorrow. Basically, they had both the opportunity to share their story with empathetic and concerned listeners, as well as the distraction of trying to argue an interpretation of their faith – in some ways this was an emotional escape hatch where they could release some of their frustration at their helplessness in the face of their children’s terminal condition.

    Note: My family is filled with members who are stubbornly non-conformist, and enjoy the challenge of attempting to drive change, whether that is changes in opinion, or changes in behaviour, or even in understanding. It is at times able to be used as an at least somewhat socially acceptable emotional release of tension. It is perhaps less destructive than falling into a state of despair.

    In your presentation, you mentioned that you were concerned not to retraumatise the parents and children who are receiving help from your narrative services. You also talk about reframing some of the people’s ways of telling their stories – providing ideas such as the tree analogy, etc. I wonder whether the greatest help that you provide is the opportunity for parents and their children to simply tell their stories and be heard. The guidance as to how to tell their stories is something I see as useful, in terms of it opening up ideas and alternative ways of understanding the same facts (a child having cancer), but I wonder if it in any way effects what is acceptable to be expressed. I raise this because I know from my personal experience that if I was required to tell my experiences of loss and sorrow at the decline and subsequent death of my nephew and later my niece, I would have left such a program. However, once having had the opportunity to tell my story, I would have valued input into how to interpret, or reinterpret the facts of that experience.

    I know this behaviour to be true of me now, because I have been diagnosed with multiple sclerosis (MS), and have a number of high risk factors for the development of secondary progressive MS; which is an untreatable one way journey into physical decline, disability, and subsequent death. I consider it a most undignified way to die, and experience much frustration from the potential for this outcome. Still, fortunately, I currently have a treatable variant of MS, even if the treatments are only partially functional and act more as a delay of the progression to disability, not a means of stopping it altogether. Anyway, back to my point, I have gone to some social support groups for people with MS, and have found their approaches inadequate to my sense of my needs; thus I have subsequently left them. I have not sought psychological therapies, because I find modern clinical psychology approaches equally inadequate; although I do value the more humanistic and existential therapies.

    I guess what I am questioning here is, basically, what is wrong with conventional psychological therapeutic approaches that you have chosen a narrative approach for this particular set of circumstances – parents being faced with having a child who has developed cancer? Is not letting them tell their story, whether in a group or one-on-one, and listening in an empathetic way enough? What do you see that makes the narrative approach the most applicable?

    Thank you for your time, and sharing your good work.

    Regards

    Andrew Tyson
    P.S. I was until my health declined so significantly, undertaking a psychology internship, and was provisionally registered as a psychologist (for only two years). I still wish to become a psychologist, but will have to find an alternative route to achieve this goal. In my studies and the pursuits of my interests in therapeutic methodologies, I have come across narrative therapy; and I value many of the insights but I am still sitting on the fence as to both my understanding of all the ramifications of the approach and to its overall value in counselling. I very much support and value narrative therapy’s deconstruction of power relationships, and its focus on social justice – the hearing of the story from the sufferer rather than forcing them to fit into an external interpretation of their issues.

    • Andrew
      I was touched to hear your personal story of having to witness within your family two very sick little children. I was also happy to hear about the healthy surviving children. Getting support through beliefs and the community that often surrounds various beliefs has been helpful to many of the families I work with. Thinking of the difficulties that can happen with relationships as a blessed distraction’ from pain is something I would like to share with my families.
      Andrew – merci pour vos mots touchants se rapportant à votre histoire personnelle, quand vous avez témoigné au sujet de la vie trop courte de deux enfants très malade de votre famille. Le soutien que nous procurent les croyances et la communauté sont très aidant pour plusieurs familles avec qui je travaille. J’ai trouvé touchant comment on peut aussi utiliser les difficultés relationnelles comme une distraction bénie afin d’oublier la douleur. J’ai pensé que j’aimerais partager cette idée avec les familles du groupe COURAGE.
      Being stubbornly non-conformist can be fun and challenging.
      I wonder how many narrative therapists would say that they were a bit stubbornly non-conformist. Working in a hospital setting using narrative practices can feel a bit non-conformist and be a challenge and attempting to `drive change` can sometimes meet with obstacles that need socially acceptable emotional releases of tension. In a way you offer me the opportunity to tell my story. I have told the story of where I am now with the work I do but not so much of the challenges I have received at first by other team members who were concerned in particular about the confidentiality factor of the sharing of stories. I even had to have a special discussion with the registry board of psychologists here in Quebec and now have been given permission to only put in the charts the words of the people I see and not my interpretation of those words (copies given always to the people I have conversations with).

      D’être obstinément non-conformiste peut nous donner des défis mais ça peut aussi être un peu amusant. Je me demande combien des thérapeutes qui sont attirés par les idées narratives peuvent se décrire comme ‘obstinément non-conformiste. De travailler dans un hôpital en utilisant les idées narratives peut être considéré comme non-conformiste et peut être un défi et aussi une façon de faire beaucoup de changements. On peut trouver les obstacles aussi ou il faut trouver les façons de réduire les tensions avec une approche pro-sociale. D’une certaine façon, vous m’avez donné une opportunité de raconter mon histoire. Je vous ai raconté où je suis maintenant avec le travail je fais mais je ne vous ai pas parlé des obstacles du début. J’aime beaucoup les gens avec qui je travaille et j’ai beaucoup de respect pour eux. Mais ils m’ont questionné assez souvent au début et pour ça je les respecte davantage. Je pense qu’il ne faut pas juste accepter quelque chose sans poser de questions. J’ai eu des questions sur la confidentialité quand les familles partagent leurs histoires aussi librement. Nous avons parlé ensemble de manières pour respecter l’aspect privé des vies, et nous avons parlé aux enfants pour qu’ils ne parlent pas à leurs amis des histoires privées de leurs amis dans notre équipe. C’était nécessaire pour moi d’expliquer à L’Ordre des psychologues au Québec comment j’écris mes notes de dossier. J’écris pour mes familles en donnant une copie des notes à chaque famille pour qu’ils sachent ce qui ce retrouve dans le dossier de leur enfant. C’est maintenant accepté par l’Ordre des psychologues que je peux le faire comme ça.
      Regarding your ideas about the re-traumatizing possibilities that can come from a feeling of having to tell about experiences of loss and sorrow would have driven you to leave such a program. That is why I feel it is important that no one has to tell anything. Many new parents are afraid to read the COURAGE living document because they think it will be full of stories of trauma. However, when they are assured that it is stories of survival, that yes, do come from trauma, they are more able to read. According to Michaell White, Narrative Therapy helps people to move away from the problem story and enter into other realities which exists but are harder to see. As Michael White used to say, people need a firm ground to stand on (maybe my interpretation of his words) before talking of the storms of life. This is what I feel can be provided using the various metaphors the help people understand their own strengths, resources, values and beliefs before recounting any part of the trouble story.
      À propos de votre crainte qu’on peut revivre un traumatisme si on pense qu’il faut dire nos expériences de tristesse et de perte, et que votre crainte vous forcerait à abandonner un programme comme ca. C’est l’une des raisons pour lesquelles je trouve vraiment important que personne ne soit obligé dire quelque chose. Plusieurs parents ont peur de lire le document vivant – COURAGE – parce qu’ils pensent c’est un livre plein d’histoires de trauma
      Mais quand ils sont assurés que c’est plein d’histoires de réussite, qui, évidemment sont venues d’un trauma, ils sont plus capables de le lire. Selon Michael White, les Pratiques narratives aident les gens à s’éloigner de la réalité dans laquelle leurs problèmes les a plongé et d’entrer dans d’autres réalités existantes, qu’ils ne voient pas pour le moment. Mais il a aussi dit qu’il faut avoir une terre ferme sous les pieds avant d’être capable de parler des problèmes (Les tempêtes de vie) et de trouver ses autres réalités. Je pense qu’on peut trouver cette terre ferme avec les métaphores, on peut comprendre nos ressources, nos forces, nos valeurs et la richesse d’autres histoires, comment les gens ont maitrisé certaines choses avant de parler des tempêtes de la vie.

      It is unfortunate that not all children with cancer survive. I also animate a group called “Baby steps” in which parents document their stories of surviving the death of a child. We are writing a book that we hope to be able to use to help other parents. This is an ongoing project that was started in 2009 with members participating and sometimes moving out of the group, some have stayed the whole time.
      Malheureusement, pas tous les enfants atteints du cancer survivent. J’anime aussi un autre groupe, qui s’appelle les Petits Pas, dans lequel les parents documentent leurs histoires racontant comment ils survivent à cette expérience très, très, difficile. Nous sommes en processus d’écrire un livre que nous pensons peut être aidant pour les autre parents en deuil de leur enfant. C’est un projet qui a debuté en septembre 2009 avec les changement des membres.
      I was sorry to hear about your attempts to get support for your own personal illness Andrew. I don`t like to think of certain kinds of therapies being wrong or right but some people might feel more of a connection with a different form of therapy.
      Andrew, j’étais désolée d’entendre que vos tentatives de recevoir du soutien pour votre maladie personnelle étaient décevantes. Je n’aime pas penser qu’il y a des bonnes et des mauvaises thérapies, mais certaines personnes peuvent se sentir plus à l’aise ou plus connectées avec certaines formes de thérapie.
      I felt a connection with narrative ideas for many reasons. One was the guiding through questions for people to recognizes their own resources rather than what some more traditional therapies seem to do, is having the answers within the therapy approach. I can`t possibly believe that I have the answers to other’s difficulties. But to think that maybe, through my learnings of narrative ideas, I might have the questions that could help each person find their own personal and individual answers, or if not answers something that approaches a feeling of finding help for their situation.
      J’ai senti une connexion avec les idées narratives pour plusieurs raisons. Une raison était qu’on peut essayer de guider les personnes qui nous consultent avec nos questions afin qu’ils reconnaissent leur propres ressources au lieu de faire comme d’autres thérapies qui cherchent à donner les idées de ce qu`il faut faire ou de ce qui est mieux à faire. Moi, je ne pense pas que j`ai les meilleures réponses aux autres difficultés. Mais, je pense, peut-être, avec les formations de la thérapie narrative que j`ai eu, je peux avoir les questions qui peuvent aider chaque personne à trouver leurs propres réponses pour leur vie, ou si il n`y a pas de bonne réponse à trouver, ils peuvent trouver quelques chose qui se rapproche d’un sentiment de trouver de l’aide pour leur problèmes.
      Also, I was raised in a very close community which turned to each other for aid and support and therefore personally felt the value of community. I feel that our societal changes recently have had people move away from community or maybe into a difficult sort of community (the virtual community of twitter and Facebook) and that it might be helpful for people who are struggling with such difficulties as illness in a child, might appreciate this community spirit.
      Aussi, j`ai été élevée dans une communauté très soudée où les gens se tournent vers les autres pour de l`aide et j`ai senti personnellement la valeur de la communauté. Je sens que notre société a beaucoup changé plus récemment et que les gens ne sont pas aussi proches de l`ancienne idée de communauté. C`est une communauté différente (la communauté virtuelle de twitter et Facebook) et que c`est peut-être aidant pour les gens qui ont un enfant malade de trouver une autre sorte de communauté.
      The feedback I get from many parents is that this (both the individual narrative questions and approach and the collective idea approach) is helpful. That does not mean that other methods cannot be helpful as well just that I feel more comfortable in a non-hierarchical less directive or analytic way of working.
      Thank you Andrew for your sharing and your questions that really got me thinking.
      Les familles me disent souvent qu`elles trouvent que la thérapie narrative et les idées collectives de l`approche communautaire sont aides. Ce n`est pas pour dire que les autres méthodes ne peuvent pas être aidantes aussi mais juste que je me sens plus à l`aise avec cette approche qu’avec les thérapies plus directives ou plus analytiques.
      Merci beaucoup Andrew pour partager et pour vos questions qui m’ont aidé à aller plus loin dans ma réflexion.

  4. Hi Linda, and everyone else,
    I really appreciated watching your presentation Linda, and reading the collective document. Please thank the families involved for sharing their ideas and stories. I love hearing about people’s coping tricks – the knowledges and skills they use in the darkest times. The idea ‘What we can learn from having cancer’ especially caught my attention, because I’ve been thinking about how there is always something that can be gained in the hard times, even when at the outset that idea may seem impossible. One child said their Dad said “Maybe this experience would help me understand better other kids, because I planned to be a teacher”. This reminded me that we bring learnings from our own lives to our work, and also that the families we meet with can support and encourage others because of the insights their experiences have brought. This reminds me of the value of group work and of living documents in finding connection, hope, support and the knowledge that “I’m not the only one”.

    The ideas you’ve discussed about extending beyond the group such as the comic strip, video and blog are inspiring. How have you found the time to do this, when you see so many families? Have you had to facilitate all these aspects, or have the families run with these ideas themselves? I’ve co-facilitated a Tree of Life group with adults, but the idea of whole families is something to consider….

    The coping trick of using hopeful lyrics in songs, and ideas from books and films is a well loved one of mine too. I love hearing that other people also use this idea. Imagine being the person who wrote the songs, stories etc that other people find inspiring! I wonder if they know the impact they have on other people’s lives.

    I’m keen to know more about the ‘Prescription to keep happiness alive’. Are you able to say more about that?

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