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Held to ransom: parents of self-harming adults describe their lived experience of professional care and caregivers
Umeå University, Faculty of Medicine, Department of Nursing.ORCID iD: 0000-0002-3360-5589
Umeå University, Faculty of Medicine, Department of Nursing.
Umeå University, Faculty of Medicine, Department of Nursing.
2010 (English)In: International journal of qualitative studies on health and well-being, ISSN 1748-2631, Vol. 5, no 3Article in journal (Refereed) Published
Abstract [en]

The aim of the study was to discover and describe lived experiences of professional care and caregivers among parents of adults who self-harm. Narrative interviews were conducted with six parents of daughters with self-harming behaviours and analysed using a phenomenological hermeneutic approach. The meanings of the parents' narratives of their lived experiences of professional care and caregivers were interpreted as their being involved in 'limit situations' comparable to hostage dramas. Several meaningful themes contributed to this interpretation: being trapped in a situation with no escape; being in the prisoner's dock; groping in the dark; and finding glimmers of hope. Parents of daughters who were in care because of self-harming often felt obliged to pay an emotional ransom, which included feelings of being accused, being 'broken', being confused, and feeling lost. Moments of peace occurred as welcome breaks offering a short time of rest for the parents. Situations that were understood by the parents and solved in a peaceful way were experienced as a respite and inspired parents with hope for their daughters' recovery.

Place, publisher, year, edition, pages
2010. Vol. 5, no 3
Keyword [en]
Lived experience, narratives, phenomenological hermeneutics, psychiatric nursing, self-harm
URN: urn:nbn:se:umu:diva-37428DOI: 10.3402/qhw.v5i3.5482ISI: 000282678200003PubMedID: 20877586OAI: diva2:360348
Available from: 2010-11-03 Created: 2010-11-03 Last updated: 2015-04-23Bibliographically approved
In thesis
1. Self-harm - hovering between hope and despair: experiences and interactions in a health care context.
Open this publication in new window or tab >>Self-harm - hovering between hope and despair: experiences and interactions in a health care context.
2011 (English)Doctoral thesis, comprehensive summary (Other academic)
Alternative title[sv]
Självskadebeteende - att sväva mellan hopp och förtvivlan :  upplevelser och interaktion i en vård kontext.
Abstract [en]

Background The definition of self-harm used in this project is repeated, impulsive behaviour causing tissue damage, yet not intended as a suicide attempt. Instead of wishing to die, the person who self-harms wishes to be relieved from anxiety. The thesis comprises four studies and the overall aim was to describe experiences of care among people who self-harm, professional caregivers, and close relatives (parents), and to explore interpretative repertoires that jointly construct the interaction between people who self-harm and their professional caregivers.

Methods The participants were nine women who self-harmed (I), six nurses, three of each sex (II), five mothers and one stepfather (III), and six women who self-harmed in two psychiatric inpatient wards and their caregivers (IV). Data were collected through narrative interviews (I, II, III), participant observations (IV), and informal interviews (IV). The interviews lasted between 40 and 50 minutes (I), between 40 and 65 minutes (II), and between 30 and 85 minutes (III). The observations including informal interviews in study IV comprised 150 hours of descriptive observations and 40 hours of focused observations. The data were analysed using qualitative content analysis (I, II), phenomenological hermeneutics (III), and discursive psychology (IV).

Results People who self-harmed experienced care as inferior, not satisfying their needs. The findings presented a paradox; on the one hand, the women realised that society considered self-harm an inappropriate way to alleviate mental suffering, and on the other hand, they experienced self-harm as the only way to survive and to foster hope in themselves (I). Caregivers felt powerless and burdened when unable to identify and satisfy the women’s needs. Feelings of fear, frustration, and abandonment created a significant burden for caregivers (II). Parents’ lived experience of the professional care and caregivers of their self-harming adult children could be described as a hostage drama. As in a hostage situation, parents felt held to emotional ransom by deficient care and sometimes hostile caregivers (III). The interpretative repertoires that jointly constructed the interaction between those who self-harmed and their professional caregivers, were for the caregivers a fostering and a supportive repertoire, and for the women who self-harmed a victim and an expert repertoire. The interactions between a fostering caregiver and a woman as expert or as victim, and between a supportive caregiver and a woman as victim, were complicated and promoted feelings of hopelessness among the participants. Interactions between a supportive caregiver and a woman as expert were more satisfying and raised hope among the participants (IV).

Synthesis of findings Hope and hopelessness ran together as a thread of meaning throughout the studies. All participants experienced and expressed hope and hopelessness in various ways. The self-harming women hovered between hope and hopelessness, hoping for help and support, but led back to hopelessness by their experiences in care. The women used self-harm as a way to cope and to maintain hope in themselves. The parents initially had confidence in healthcare and hoped for help. However, their experiences of meeting deficient care often made them feel hopeless. Parents paid an emotional ransom when they accepted deficient care for their daughters. The caregivers felt frustrated, angry, and powerless, and their view of self-harm as an endless behaviour led to hopelessness. However, they struggled to see the women’s abilities, not only their difficulties, and described how they had to try to see self-harm in another way. Caregivers who were convinced that it was possible to stop self-harming and leave it behind were able to bring hope to themselves, to parents, and to the women who self-harmed. The present studies suggest that there is a difference between self-harm and suicide attempts or suicide. Other researchers echo these findings.

Conclusions Paradoxically, self-harm usually seems to be a life sustaining act, a way of raising hope in oneself. The importance of caregivers who listen and try to understand people who self-harm, as well as their close family members, is evident. By asking open-ended questions and being non-judgemental, listening, and showing a genuine interest in the person’s lived experience; caregivers can inspire hope in people who self-harm.

Abstract [sv]

Bakgrund Självskadebeteende definieras i denna avhandling som ett upprepat, impulsivt beteende där hudskada uppstår. Avsikten med handlingen är inte att begå självmord, stället har personen en önskan att lindra ångest. Avhandlingen består av fyra delstudier och det övergripande syftet var att beskriva erfarenheter av vård bland personer med självskadebeteende, professionella vårdare och närstående (föräldrar), samt att belysa tolkningsrepertoarer som konstruerar interaktionen mellan personer med självskadebeteende och deras professionella vårdare.

Metod Deltagarna var nio kvinnor med självskadebeteende (I), sex sjuksköterskor, tre av vardera kön (II), fem mammor och en styvpappa (III) samt sex kvinnor med självskadebeteende som vårdades vid två psykiatriska slutenvårdsavdelningar och deras professionella vårdare (IV). Datainsamlingsmetoder var narrativa intervjuer (I, II, III), deltagande observationer samt informella intervjuer (IV). De narrativa intervjuerna varade mellan 40 och 50 minuter (I), mellan 40 och 65 minuter (II) samt mellan 30 och 85 minuter (III). Beskrivande deltagande observationer genomfördes, totalt 150 timmar, varav ca 40 timmar var fokuserade deltagande observationer. Data analyserades med hjälp av kvalitativ innehållsanalys (I, II), fenomenologisk hermeneutik (III) samt diskurspsykologi (IV).

Resultat Personerna med självskadebeteende upplevde att vården var undermålig och att den inte tillfredställde deras behov. Resultaten visar en paradox, å ena sidan insåg kvinnorna att samhället i stort anser att självskadebeteende är ett oacceptabelt sätt att hantera psykiskt lidande, å andra sidan, upplevde kvinnorna att självskadandet var det som gjorde det möjligt att överleva och att inge sig själv hopp (I). Professionella vårdare kände sig maktlösa och tyngda när de inte kunde identifiera och tillfredsställa kvinnornas behov av vård. Vårdarnas rädsla, frustration och känsla av övergivenhet, vilka medförde en känsla av att vara belastad, framkom (II). Den levda erfarenheten av professionell vård och vårdare bland föräldrar till vuxna barn med självskadebeteende beskrevs som ett gisslandrama. Föräldrar till en dotter i en gisslansituation betalade en känslomässig lösensumma när de mötte en undermålig och ibland fientlig vård (III). De dominerande tolkningsrepertoarerna som tillsammans konstruerade interaktionen för vårdarna var en fostrande och en stödjande repertoar. För kvinnorna med självskadebeteende dominerade en offer och en expertrepertoar. Interaktionen mellan en fostrande vårdare och kvinna som expert eller offer, samt en stödjande vårdare och en kvinna som offer, var mer komplicerad och ingav hopplöshet bland deltagarna. Interaktionen mellan en stödjande vårdare och en kvinna som expert var mer tillfredsställande och främjade hopp bland deltagarna.

Syntes av resultat Hopp och hopplöshet visade sig vara ”en röd tråd” genom delstudierna. Alla deltagare upplevde och uttryckte hopp och hopplöshet på olika sätt. Kvinnorna svävade mellan känslor av hopp och hopplöshet, med önskningar om hjälp och stöd men deras erfarenheter av vård ingav hopplöshet. Kvinnorna använde självskada som en hanteringsstrategi och som ett sätt att inge sig själv hopp. Föräldrarna hade initialt ett förtroende för vården och hade förhoppningar om hjälp, men deras erfarenheter av att möta en undermålig vård ingav istället en känsla av hopplöshet. Föräldrarna betalade en känslomässig lösensumma när de accepterade en dålig vård för sin dotter. Vårdarna kände sig frustrerade, arga och maktlösa och deras syn på självskadebeteende som något ändlöst ingav hopplöshet. Vårdarna kämpade för att se kvinnornas förmågor, inte bara deras svårigheter och försökte förstå självskadebeteende. Vårdare som var övertygade om att det var möjligt att sluta skada sig och lämna det bakom sig lyckades inge sig själv, föräldrarna och kvinnorna med självskadebeteende hopp. Resultaten från föreliggande studier tyder på en skillnad mellan självskadebeteende och självmordsförsök eller självmord, vilket även stöds av andra forskare.

Slutsatser Paradoxalt nog verkar självskadebeteende vara ett livsuppehållande beteende, ett sätt att inge sig själv hopp. Betydelsen av vårdare som lyssnar och försöker förstå personen som skadar sig och närstående är tydlig. Genom att ställa öppna frågor och tala på ett icke dömande sätt, samt genom att lyssna och visa ett genuint intresse för personens upplevelser, kan vårdare förmedla hopp.

Place, publisher, year, edition, pages
Umeå: Umeå universitet, Institutionen för omvårdnad, 2011. 73 p.
Umeå University medical dissertations, ISSN 0346-6612 ; 1447
discursive psychology, experiences, hope, hopelessness, interactions, narratives, phenomenological hermeneutics, psychiatric nursing, qualitative content analysis, self-harm, berättelser, diskurspsykologi, fenomenologisk hermeneutik, hopp, hopplöshet, interaktion, kvalitativ innehållsanalys, psykiatrisk omvårdnad, självskada, upplevelser
National Category
Research subject
Caring Sciences
urn:nbn:se:umu:diva-48505 (URN)978-91-7459-295-5 (ISBN)
Public defence
2011-11-11, Aulan, Vårdvetarhuset, Umeå Universitet, Umeå, 13:00 (Swedish)
Available from: 2011-10-21 Created: 2011-10-20 Last updated: 2015-04-23Bibliographically approved

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Lindgren, Britt-MarieAström, StureGraneheim, Ulla Hällgren
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