Pain requiring treatment is experienced by many cancer patients at the end of life. When these patients stay at home, family caregivers are often directly implicated in pain management. There are few studies that examine the process that these family caregivers engage in when they take on the responsibility of pain management. This means we need information on whether or not these family caregivers are prepared for management to ensure proper support and optimal pain control. / The purpose of this qualitative study was to study the process used by family caregivers at home to manage the pain of palliative cancer patients using a grounded theory approach. A total of 24 family caregivers with differing relationships to the patient and differing lengths of caregiver experience participated. Family caregivers were recruited using purposeful then theoretical sampling. The data sources were taped, transcribed (semi-structured) interviews, field notes, and memos. Data analysis used Strauss & Corbin's (1998) suggestions for substantive coding: open, axial, and selective coding. / The results lead to the proposition of an explanatory theory titled "the puzzle of pain management," which include: 1) a frame of the process of "drawing on past experiences"; 2) puzzle pieces representing the process "strategizing a game plan" which include the sub-processes of "accepting responsibility," "seeking information," and "establishing a pain management relationship"; 3) puzzle pieces representing the process of "striving to respond to pain" which include the sub-processes of "determining the characteristics of pain," "implementing a strategy for pain relief," and "verifying if pain relief strategies were successful; and 4) "gauging the best fit," a decision-making process that joins the two pieces of the puzzle. / The realization that family caregivers assemble a puzzle of processes indicates that there are factors that nurses must be aware of before creating, teaching, and implementing interventions for pain management. Furthermore, the results provide information to create and subsequently administer interventions based on caregivers' existing knowledge, identified needs for information and support, and current pain management regimens. The puzzle of pain management must be validated by further studies using this theory, in part, to help create interventions that will allow us to know how useful the theory is in practice. / Keywords: family caregivers, carers, pain management, palliative care, cancer pain, home care, grounded theory

Note: / Pain requiring treatment is experienced by many cancer patients at the end of life. When these patients stay at home, family caregivers are often directly implicated in pain management. There are few studies that examine the process that these family caregivers engage in when they take on the responsibility of pain management. This means we need information on whether or not these family caregivers are prepared for management to ensure proper support and optimal pain control. The purpose of this qualitative study was to study the process used by family caregivers at home to manage the pain of palliative cancer patients using a grounded theory approach. A total of 24 family caregivers with differing relationships to the patient and differing lengths of caregiver experience participated. Family caregivers were recruited using purposeful then theoretical sampling. The data sources were taped, transcribed (semi-structured) interviews, field notes, and memos. Data analysis used Strauss & Corbin’s (1998) suggestions for substantive coding: open, axial, and selective coding.[...] / Les patients atteints de cancer en fin de v1e eprouvent souvent des douleurs qui doivent etre traitees. Lorsque ces patients demeurent a la maison, ce sont plus souvent les proches-aidants qui sont impliques directement dans la gestion de cette douleur. Peu d’etudes existent sur le processus que les prochesaidants adoptent lorsqu’ils prennent la responsabilite de gerer la douleur. Il est done opportun d’accroltre nos connaissances afin d’outiller les proches-aidants a gerer de fac;on optimale la douleur et de mieux les soutenir dans leurs roles. Le but de cette etude qualitative est d’etudier le processus que les prochesaidants utilisent lorsqu’ils prennent soin a domicile d’une personne en fin de vie. Cette etude se base sur une approche de theorisation an ere e. L’ echantillon de I’ etude se compose de 24 proches-aidants ayant des types et des durees de relation differentes avec le patient. Les proches-aidants ont ete selectionnes selon une procedure d’echantillonnage a choix raisonne, suivi par une procedure d’echantillonnage theorique. Les donnees recueillies sont basees sur des entrevues (semi-structurees) enregistrees et transcrites, ainsi que sur des notes de terrain et des memos. Les analyses de donnees ont ete basees sur les recommandations de Strauss & Corbin ( 1998) pour le codage; c’ est-a-dire codage ouvert, axial et selectif.[...]

Hensikten med denne undersøkelsen var å belyse et lite studert område, nemlig: Stemmer enkeltvedtak overens med hjelpen hjemmeboende personer med demens får, og om tap av ferdigheter påvirker vedtakene og hjelpen som gis. Materiale: I alt 460 hjemmeboende personer med demens fra 24 kommuner i alle landets fem helseregioner ble inkludert i undersøkelsen. Alle fikk hjelp fra hjemmebaserte tjenester og hadde en demenssykdom diagnostisert av lege og/eller hjemmesykepleien antok at det forelå demens på grunnlag av en Klinisk Demensvurdering I alt 489 pasienter ble rekruttert, 249 med demensdiagnose og 240 uten. Blant de 240 med antatt demens hadde 211 en KDV skåre 1 eller høyere. Disse ble inkludert, mens de 29 med lavere skåre ble ekskludert. Metode: Pasienten ble vurdert med Klinisk Demensvurdering og et skjema som måler funksjoner i dagliglivet, Rapid Disability Rating Scale-2. Enkeltvedtak for pasientene ble samlet inn og kategorisert ved hjelp av kvalitativ innholdsanalyse slik at kategoriene stemte overens med hjelpetiltakene som ble tilbudt. Hjelp til pasientene ble registret i en sju dagers periode. Resultater: Vi fant liten sammenheng mellom vedtakene og utført hjelp, og liten sammenheng mellom behov for hjelp og utført hjelp. Åttiseks prosent av vedtakene ble fulgt opp av hjemmetjenesten, men svært mange får hjelp uten vedtak. Undersøkelsen viser at mange som har behov for hjelp, ikke får hjelp. Undersøkelsen viser at det ikke er lovverket som svikter, men håndhevelsen av gjeldende lover og forskrifter. / he purpose of this study was to look more closely at a previously neglected area namely: Do administrative decisions for provisions of care correspond to the actual care given to persons with dementia living at home, and does the loss of skills effect the decision and care provided?The method used was collection of data, which was than categorised by a qualitative analysis of content. Although individual administrative decisions are governed by law, and most local authorities have passed guidelines on how these decisions should be formulated, and how the care should be provided, our study showed a large variation in the quality of provisions and professional practice. Four hundred and sixty persons with dementia, from all health regions, were included in the study. Inclusion criteria were patients with known dementia, diagnosed by a doctor and/or assumed to be demented by the community nurse. In total, 489 patients were recruited, 249 with a confirmed diagnosis of dementia, and 240 without. Of these 240 patients, with assumed dementia, 211 had a KDV score of one or greater. These were included, whilst the 29 with lower scores were excluded from the study. Data for the study was thus collected from 460 patients. The results show little relationship between the administrative decisions for care, the need for care, and actual care provided. Eighty-six percent of administrative decisions were followed up by the home services, but many receive help without formal decisions. The study also found many in need of help who did not receive it. Routines for arriving at and formalising administrative decisions were incomplete. The study shows a failure of implementation of existing laws, regulations and patient rights, rather than a failure of the laws and regulations themselves / <p>ISBN 91-7997-148-2</p>

Diss. (sammanfattning) Linköping : Univ., 2003. / Härtill 4 uppsatser.

Diss. Göteborg : University.

Diss. (sammanfattning) Linköping : Univ., 2002. / Härtill 5 uppsatser. År 2005 tilldelat nummer i serien Linköping studies in arts and science.

Diss. Umeå : Univ., 2005.

Diss. (sammanfattning) Umeå : Umeå universitet, 2005. / Härtill 4 uppsatser.

Thesis (M. N.) (Hons.) -- University of Western Sydney, 2003. / A thesis submitted in total fulfillment of the requirements for the degree of Master of Nursing (Honours), Faculty of Nursing and Community Health, Department of Nursing, University of Western Sydney, February, 2003. Bibliography : leaves 190-205.

Diss. Malmö : Malmö Högskola, 2006. / Härtill 4 uppsatser.