The meaning and consequences of amputation and mastectomy from the perspective of pain and suffering.

BACKGROUND: The concepts 'pain' and 'suffering' are frequently treated as synonymous. However, they are clearly distinct phenomena. Phantom phenomena including pain and sensory disturbances are still recognized as long-lasting problems after limb amputation and after mastectomy. The complex nature of phantom phenomena makes the interpretation of its results ambiguous, regarding the prevalence of pain, sensory disturbances and the accompanying suffering. There is clinical experience that suffering is a great burden for the individual but there is a lack of systematic studies of patients' own evaluations of the suffering caused by their phantom phenomena. OBJECTIVES: The overall aim of this study was to identify and describe patients' suffering related to, and as a part, of their post-amputation situation. METHODS: The present study constitutes a part of a prospective, two-year follow up project investigating interviews of 28 men and women in different ages and who have undergone a limb amputation or mastectomy. The reason for amputation or mastectomy varied among the patients and included vascular diseases, cancer (sarcoma and breast-cancer) and trauma. Our ambition was to extract as much variations as possible in different, individualized aspects of the actual pain and suffering producing situation. The participants were, here, invited to open-ended, narrative-oriented interviews one month after the surgery. The interviews were transcribed verbatim and analyzed within qualitative methodology: thematic content analysis. RESULTS: Twenty-two of 28 interviewees experienced phantom pain and phantom sensations. The two surgical processes amputation and mastectomy meant for a majority of the interviewees a critical event with threatening consequences for everyday life such as loss of function and personal integrity. Nine interviewees felt even stigmatized as a result of their lost body part. Numerous inter-related factors following the amputation/mastectomy, which can inflict severe suffering on the amputee, were uncovered. The context in which the interviewees were informed about the decision to amputate proved to be one such critical and important factor. CONCLUSION: To understand potential suffering in relation to phantom phenomena, it will never be enough merely to have knowledge of the underlying physiological or neurological mechanisms and/or the intensity of phantom pain and phantom sensations. Rather, it is necessary to find out how the loss of the body part and its everyday consequences are experienced by patients. IMPLICATIONS: It is important to create time for real dialogue with the patients both during pre-operative preparation and post-operative rehabilitation in order to clarify and verbalize elements that constitute the patients individual suffering. Hopefully this strategy can alleviate future chronic pain problems, severe psycho-social distress and suffering. Such an approach ought to have impact also for perceived suffering after other types of surgery or different invasive treatments.

Management of Children with Autism Spectrum Disorder in the Anesthesia and Radiographic Context.

OBJECTIVE: As a primary objective, this study purports to develop guidelines to better care for children with autism spectrum disorder (ASD), particularly regarding these children's preparation for anesthesia and radiologic procedures. METHODS: Using a Delphi method with an online distribution of questionnaire, guidelines for caring for children with ASD were created. Twenty-one participants were included in the expert panel. These participants were working with children with ASD in several anesthesia and radiology departments in Sweden. A list of items was created from a previous survey and the literature. In the first round, the items with <60% agreement were discarded. Items were merged, and a new list was created. Two more similar rounds were performed. In the last 2 rounds, 21 participants responded, and 80% agreement was considered to be consensus. RESULTS: The final guidelines consisted of 14 items and a checklist of 16 factors. The 5 areas covered by the items and the checklist were as follows: planning involving parents/guardians, features in the environment, and use of time, communication, and the health care professionals. The organization was important in making it possible for the health care professional to care for the individual child according to the child's needs. It was important to involve the parents/guardians to obtain knowledge about the functioning of the child. CONCLUSION: A caring encounter involving a child with ASD in the anesthesia and radiology contexts requires advance planning, catered specifically to the individual needs of each child. To accomplish this, general knowledge regarding ASD and ASD's particular manifestation in the child entrusted to their care is required from the health care workers. The organization needs to have structures in place to facilitate this process.

Perioperative and Anesthesia Guidelines for Children with Autism: A Nationwide Survey from Sweden.

OBJECTIVE: The overall aim of this study was to describe the current set of guidelines for the preparation and care for children with autism spectrum disorder (ASD) in the perioperative setting across Sweden and explore the content of these guidelines in detail. METHOD: An online questionnaire was distributed to the chairpersons of all anesthesia departments (n = 68) and pediatric departments (n = 38) throughout Sweden. Follow-up phone calls were made to those departments that did not return the questionnaire. The presence of guidelines was analyzed through descriptive statistics. These guidelines and comments on routines used in these departments were analyzed inspired by conventional content analysis. RESULTS: Seven of the 68 anesthesia departments and none of the 38 pediatric departments across Sweden have guidelines for preparing and/or administering care to children with ASD within the perioperative setting. From the guidelines and routines used, 3 categories emerge: "lacking the necessary conditions," "no extra considerations needed," and "care with specific consideration for children with ASD." These 3 categories span a continuum in the care. In the first category, the anesthesia induction could result in the child with ASD being physically restrained. In the last category, the entire encounter with the health care service would be adapted to the specific needs of the child. CONCLUSION: There is a lack of evidence-based guidelines specifically designed to meet the needs of children with ASD in the preoperative period in Sweden. Further research is needed to understand if children with ASD would benefit from evidence-based guidelines.

Children's voices--Differentiating a child perspective from a child's perspective.

OBJECTIVE: The aim of this paper was to discuss differences between having a child perspective and taking the child's perspective based on the problem being investigated. METHODS: Conceptual paper based on narrative review. RESULTS: The child's perspective in research concerning children that need additional support are important. The difference between having a child perspective and taking the child's perspective in conjunction with the need to know children's opinions has been discussed in the literature. From an ideological perspective the difference between the two perspectives seems self-evident, but the perspectives might be better seen as different ends on a continuum solely from an adult's view of children to solely the perspective of children themselves. Depending on the research question, the design of the study may benefit from taking either perspective. In this article, we discuss the difference between the perspectives based on the problem being investigated, children's capacity to express opinions, environmental adaptations and the degree of interpretation needed to understand children's opinions. CONCLUSION: The examples provided indicate that children's opinions can be regarded in most research, although to different degrees.

Will it hurt? Verbal interaction between child and radiographer during radiographic examination.

This study investigated the nature of verbal interactions between child, parent and radiographer and the extent to which it varied as a function of the child's age. The participants were 20 female radiographers and 32 children (3-15 years) examined for acute injuries. The verbal interactions during the examination were video recorded and analyzed using the Roter Interaction Analysis System (RIAS). Results indicated that 80% of the verbal interaction was accounted for by the radiographer, 17% by the child and 3% by the parent. The distribution of utterances varied with regard to children's age.

Phantom phenomena - Their perceived qualities and consequences from the patient's perspective.

Background and aim The curious phenomenon phantom limbs early became the object of research, and its underlying mechanisms have been discussed over the years. The complex nature of phantom phenomena makes interpretation of the results ambiguous, regarding both prevalence and the accompanying suffering. There is a lack of knowledge about how amputees experience the meaning and consequences of phantom phenomena. The present aim, therefore, was to investigate how individuals, in an interview situation, described the qualities of possible perceived phantom phenomena, and how their experience affected their lives one month after the amputation/mastectomy. Methods Twenty-eight women and men who had undergone a limb amputation or mastectomy were interviewed. The focused, narrative-oriented interviews were transcribed verbatim and the scripts were analysed with content analysis. Results One month after the amputation the informants described and related their phantom pain and phantom sensations in sensory-discriminative, motivational-affective and cognitive-evaluative dimensions. The phantom sensations were experienced mainly as more agonizing than the phantom pain. Despite both the high intensity of and the high annoyance at the phantom pain and phantom sensations, a majority felt that the phantom phenomena were not a hindrance in their attempts to recapture ordinary life. But when the hindrance was evaluated as high, the annoyance was evaluated as the highest possible for both phenomena or for the phantom sensations alone, never for phantom pain alone. The interviewees' reported attitudes of hindrance were also described and estimated in the light of their sociocultural circumstances. Thus, other preceding and/or co-existent pain conditions as well as factors such as pre-operative information, the respondents' views on pain treatment, and their knowledge and understanding of phantom phenomena were mentioned and related to the pain-producing situation. Two-thirds of the interviewees had received post-surgical information and for some, the phenomena were well-known from earlier experience. A majority applied some version of the medical explanation model, irrespective of age or level of education. However neither information nor medical explanation, or both, sufficed for them to understand their own phantom phenomena. Thus, differences between the concepts explanation and understanding seemed significant for the annoyance related to the phantom phenomena. Regarding background data (i) the majority of the interviewees had had pre-amputation pain problems; (ii) the breast-cancer phantoms differed in several ways; (iii) there were some age and gender differences in the descriptions of hindrance. Conclusions and implications These findings highlight the importance of observing the individual approach to the phenomena as a process of evaluation and selection. In addition, experience and understanding of the phantoms also have sociocultural aspects. There follows the need for individualized communication and information from the clinician, and for incorporating a socioscientific and meaning-centred approach in future studies. The present insights could also be of value in other iatrogenic pain conditions.

Adult limb and breast amputees' experience and descriptions of phantom phenomena-A qualitative study.

Background Phantom phenomena - pain or other sensations appearing to come from amputated body parts - are frequent consequences of amputation and can cause considerable suffering. Also, stump pain, located in the residual limb, is in the literature often related to the phantom phenomena. The condition is not specific to amputated limbs and has, to a lesser extent, been reported to be present after radical surgery in other body parts such as breast, rectum and teeth. Multi-causal theories are used when trying to understand these phenomena, which are recognized as the result of complex interaction among various parts of the central nervous system confirmed in studies using functional brain imaging techniques. Functional brain imaging has yielded important results, but without certainty being related to phantom pain as a subjective clinical experience. There is a wide range of treatment methods for the condition but no documented treatment of choice. Aims In this study a qualitative, explorative and prospective design was selected, in the aim to understand the patients' personal experience of phantom phenomena. The research questions focused at how patients affected by phantom pain and or phantom sensations describe, understand, and live with these phenomena in their daily life. This study expanded 'phantom phenomena' to also encompass phantom breast phenomenon. Since the latter phenomenon is not as well investigated as the phantom limb, there is clinical concern that this is an underestimated problem for women who have had breasts removed. Methods The present study forms the first part of a larger, longitudinal study. Only results associated with data from the first interviews with patients, one month after an amputation, are presented here. At this occasion, 28 patients who had undergone limb amputation (20) or mastectomy (8) were interviewed. The focused, semi-structured interviews were recorded, transcribed, and then analyzed using discourse-narrative analysis. Results The interviewees had no conceptual problems in talking about the phenomena or distinguishing between various types of discomfort and discomfort episodes. Their experience originated from a vivid, functioning body that had lost one of its parts. Further, the interviewees reported the importance of rehabilitation and advances in prosthetic technology. Loss of mobility struck older amputees as loss of social functioning, which distressed them more than it did younger amputees. Phantom sensations, kinetic and kinesthetic perceptions, constituted a greater problem than phantom pain experienced from the amputated body parts. The descriptions by patients who had had mastectomies differed from those by patients who had lost limbs in that the phantom breast could be difficult to describe and position spatially. The clinical implication of this study is that when phantom phenomena are described as everyday experience, they become a psychosocial reality that supplements the definition of phantom phenomena in scientific literature and clinical documentation. Conclusions There is a need for clinical dialogues with patients, which besides, providing necessary information about the phenomena to the patients creates possibilities for health professionals to carefully listen to the patients' own descriptions of which functional losses or life changes patients fear the most. There is a need for more qualitative studies in order to capture the extreme complexity of the pain-control system will be highlighted.

Phantom breast and other syndromes after mastectomy: eight breast cancer patients describe their experiences over time: a 2-year follow-up study.

UNLABELLED: Patients often experience hard-to-treat neuropathic pain and other sensations after surgery; consequently, they could develop chronic pain conditions. The phantom limb phenomenon is a well-documented postoperative pain condition. However, phantom phenomena after mastectomies are less documented. The reviews report several views on the prevalence of breast phantoms and coexisting distress. Researchers observed that new methodological approaches might facilitate further research of these issues. This prospective, qualitative study used semistructured interviews to acquire knowledge of if and how phantom breast phenomena appear within the range of other postmastectomy symptoms and sensations. The study revealed that a phantom breast could be difficult to describe and position spatially. The phantom breast phenomenon varied from classic phantom extremity phenomenon and did not seem to cause much distress. However, it proved to be a phenomenon so unknown and different that there is urgent need for more knowledge. This study highlights the importance of further investigation regarding how information and communication related to a phantom breast might be developed. PERSPECTIVE: The phantom breast is only one piece of a complicated puzzle. Because it was relatively unknown for the women in the study, it is important that analyses of this phenomenon, as a part of a postmastectomy syndrome, be conducted in a dialogue with the patients, by scientifically using qualitative methods.