Significant Others Of Persons Research Articles

Partners of persons with severe swallowing dysfunction have significantly reduced mental health.

Dysphagia can result in malnutrition, dehydration, social isolation, depression, pneumonia, pulmonary abscess, and death. The effect of dysphagia on the health and quality of life (QOL) of the life partners of persons with dysphagia is uncertain. We hypothesize that the partners of individuals with significant dysphagia will experience a significant reduction in quality of life. To evaluate the QOL of the significant others of persons with swallowing dysfunction. Persons with significant swallowing dysfunction (defined as EAT10® > 10) and their significant others were prospectively administered the 10-item Eating Assessment Tool (EAT10®) patient-reported outcome measure and the 12-item SF quality of life instrument (SF12). Summary data from the 8 mean health domains were compared between patients and their significant others. Mean scores for each domain are calibrated at 50, and a score below 47 implies significantly diminished QOL for a particular domain. Twenty-three couples were evaluated. The mean ± SD EAT10 score for persons with significant dysphagia was 21 ± 7; mean EAT10 for their significant others or for couples in the control group was 0.3 ± 0.8. The mean physical health composite score (PCS) was significantly lower for patients with dysphagia compared to their significant others (39.1 ± 10 and 46.2 ± 11, respectively) (p < 0.05). Both patients and their significant others had comparable mean mental health composite scores (MCS) of 46.6 ± 10 and 46.4 ± 10, respectively (p > 0.05). Although significant others of persons with swallowing dysfunction have higher physical well-being than their partners, they exhibit the same reduction in mental well-being, which is significantly lower than the general population. The data suggest that clinicians should address the mental well-being of the partners of persons with severe swallowing dysfunction.

Correlates of quality of life among persons living with tuberculosis: A cross-sectional study.

The correlates of quality of life originating from the demographic characteristics, comorbidities and sources of social support among persons living with tuberculosis remain underreported. The aim of this study was to examine the correlates of quality of life among persons living with tuberculosis within Greater Accra, Ghana. A cross-sectional survey design was used to assess the correlates of quality of life among 250 randomly sampled persons living with tuberculosis. Quality of life was assessed with the Quality of Life Brief Version (WHOQOL-BREF) questionnaire and correlates were derived using Spearman rho correlations. Chi-square analyses assessed associations among respondent characteristics. All four quality of life domains (physical, psychological, social relationship and environmental) of persons living with tuberculosis were positively correlated. Furthermore, receiving social support from family or friends correlated positively with respondents' quality of life. Human Immunodeficiency Virus (HIV) infection and receiving social support mainly from work colleagues or religious institutions correlated negatively with respondents' quality of life domains. Other correlates of quality of life included age, pleuritis with pleural effusion, number of dependants and distance to tuberculosis treatment centres. Social support from family and friends corresponded with better quality of life among persons living with tuberculosis. The quality of life domains of persons living with tuberculosis are interrelated and can be enhanced by social support. Healthcare providers should involve the significant others of persons living with tuberculosis, human immunodeficiency virus and pleuritis with pleural effusion in their care to promote patients' quality of life.

Twitter Usage About Stuttering

Purpose: The objective of this study was to examine specific patterns of Twitter usage using common reference to stuttering. Method: The study used cross-sectional analysis of data generated from Twitter data. Twitter content, language, reach, users, accounts, temporal trends, and social networks were examined. Results: We identified and analyzed around 270,000 tweets from May to September 2018. Of the 100 most active Twitter accounts, individuals owned 64% compared with 31% owned by organizations. The individual accounts mainly consisted of comedians who stutter and individual's accounts. Of the individual accounts, 61% belonged to people who did not stutter or significant others of persons who stutter (PWSs). PWSs or significant others of PWSs accounted for 10.9% and 28.1%, respectively. Three unique tweets were identified as each having a reach of over 8 million Twitter users, with the greatest reach exceeding 40 million users. Temporal analysis identified marked retweet outliers (&gt; 2,800 and &gt; 2,200 retweets per day) that corresponded with a prank call made to the president on air force one by Stuttering John. Results indicate that, during data collection, Twitter is a platform that primarily functions to assail political opponents or denigrate adversaries, which further enhances the negative stereotypes about stuttering. Conclusions: The conclusions are based on the 100 most active/highest reach Twitter accounts. Twitter accounts owned by individuals outnumbered organization accounts, and people who do not stutter were the most frequently active account type. This study offers important insights regarding existing trends and offers an informed direction for future advocacy for PWSs and their supporting community via Twitter.

Self-reported changes in everyday life and health of significant others of people with aphasia: a quantitative approach

ABSTRACT Background: Changes in the everyday life and health of the significant others (SOs) of people living with stroke sequalae have been widely investigated. However, information regarding the frequency of the changes in daily life and the variables most associated with these perceived life changes is limited. Aims: To examine the extent to which SOs of persons with aphasia (PWAs) experience changes in everyday life and health after the stroke event and how they evaluate these changes and to identify which variables are associated with these perceived life changes. Methods & Procedures: A study-specific questionnaire about perceived changes in everyday life and health was completed by 173 SOs of PWAs living in Sweden (response rate 67.8%). The items concerned the SO’s working and financial situation, leisure time and social life, relationship with the PWA, household work and responsibility, and health and quality of life. Outcomes & Results: The everyday life and health of the SOs were greatly affected by the stroke event. The changes the SOs experienced were mainly appraised negatively. The relationships with the PWA and immediate family were least affected by the stroke. The perceived existence and severity of physical, cognitive, and language impairments of the PWA were the variables most strongly associated with the everyday life situation of the participants. The sex and age of the participants and the nature of the relationship with the PWA were only marginally associated with the experience of the situation. Conclusions: SOs’ perceptions of the PWA’s stroke-related disabilities and need for assistance may be a key factor in identifying SOs who may require support and guidance to help them cope with their new life situation.

Appraisals and coping mediate the relationship between resilience and distress among significant others of persons with spinal cord injury or acquired brain injury: a cross-sectional study

BackgroundMany significant others of persons with serious conditions like spinal cord injury (SCI) and acquired brain injury (ABI) report high levels of psychological distress. In line with the stress-coping model, the aim of the present study was to investigate the relationship between personal resource resilience and psychological distress, and whether appraisals of threat and loss, and passive coping mediate this relationship.MethodsSignificant others (n = 228) of persons with SCI or ABI completed questionnaires shortly after admission to first inpatient rehabilitation after onset of the condition. The questionnaire included measures to assess psychological distress (Hospital Anxiety and Depression Scale), resilience (Connor-Davidson Resilience Scale-10), appraisals (Appraisals of Life Events scale, threat and loss) and passive coping (Utrecht Coping List). The PROCESS tool was used to test the presence of mediation. Confounding and differences between SCI and ABI were investigated.ResultsHigh levels of psychological distress among significant others were found (34–41%). Fifty-five percent of the variance in psychological distress was explained by the relationship between resilience and psychological distress. This relationship was mediated by appraisals of threat and loss, and passive coping. The relationship between resilience and psychological distress was similar in the SCI and ABI groups.ConclusionsThe results of our study indicate that appraisals of threat and loss and passive coping are mediating factors in the relationship between resilience and psychological distress. It seems useful to investigate if interventions focussing on psychological factors like resilience, appraisal and coping are effective to prevent or reduce psychological distress among significant others of persons with SCI or ABI.Trial registrationDutch trial register NTR5742. Registered January 9, 2016.

A life tiptoeing: Being a significant other to persons with borderline personality disorder

IntroductionBorderline Personality Disorder (BPD) is a severe psychiatric health problem with a reputation of being difficult to deal with and to treat. Significant Others (SOs) of patients with BPD show higher levels of psychological distress compared with the general population. Strengthening the coping strategies of SOs has been shown to play an important role in the recovery of the person with psychiatric health problems. Research around SOs of persons with BPD is, to our knowledge, scarce, especially qualitative research exploring their experiences.ObjectiveWe believe that if the personnel working in health care and psychiatric care are able to better understand SOs experiences and life situation, it could be an important step toward improved care.AimThe aim of this study was to describe SOs experiences of living close to a person with BPD and their experience of encounter with psychiatric care.MethodsData were collected by free-text questionnaires and group interviews and were analyzed by qualitative content analysis.Results and conclusionThe results revealed four categories: a life tiptoeing; powerlessness, guilt, and lifelong grief; feeling left out and abandoned; and lost trust. The first two categories describe the experience of living close to a person with BPD, and the last two categories describe encounter with psychiatric care.Disclosure of interestThe authors have not supplied their declaration of competing interest.

Speech-language therapists' process of including significant others in aphasia rehabilitation.

Although aphasia rehabilitation should include significant others, it is currently unknown how this recommendation is adopted in speech-language therapy practice. Speech-language therapists' (SLTs) experience of including significant others in aphasia rehabilitation is also understudied, yet a better understanding of clinical reality would be necessary to facilitate implementation of best evidence pertaining to family interventions. To explore the process through which SLTs work with significant others of people with aphasia in rehabilitation settings. Individual semi-structured interviews were conducted with eight SLTs who had been working with persons with aphasia in rehabilitation centres for at least 1 year. Grounded theory principles were applied in analysing interview transcripts. A theoretical model was developed representing SLTs' process of working with significant others of persons with aphasia in rehabilitation. Including significant others was perceived as challenging, yet a bonus to their fundamental patient-centred approach. Basic interventions with significant others when they were available included information sharing. If necessary, significant others were referred to social workers or psychologists or the participants collaborated with those professionals. Participants rarely and only under specific conditions provided significant others with language exercises or trained them to communicate better with the aphasic person. As a result, even if participants felt satisfied with their efforts to offer family and friends interventions, they also had unachieved ideals, such as having more frequent contacts with significant others. If SLTs perceived work with significant others as a feasible necessity, rather than as a challenging bonus, they could be more inclined to include family and friends within therapy with the aim to improve their communication with the person with aphasia. SLTs could also be more satisfied with their practice. In order to operate these changes in perceptions, we suggest that SLT curriculums include in-depth training about family intervention, a redefinition of the concept of patient, and exploration of SLTs' beliefs and emotions related to significant others.

Right for knowledge – the perspective of significant others of persons with memory disorders

People have a fundamental right to know about care and services within health care. This right is also important for persons with memory disorders (PwMD) and their significant others (SO) for empowering them to manage with difficult situations at home and in institution. This study explores the self-assessed level of received knowledge about care and services of the SOs of PwMDs and the understandability of that knowledge. This study employed an exploratory and correlational survey design in multisite settings for older people. Data were collected in Finland in 2010-2011 from the SOs of PwMDs (N = 304, n = 264, response rate 87%) using questionnaires, including the Knowledge of Care and Services for Persons with Memory Disorders; the level of knowledge and the understandability of the knowledge were assessed using visual analogue scale (VAS 0-100). Data were analysed statistically using descriptive statistics, independent samples t-test, one-way analysis of variance and Pearson's correlations coefficients. The self-assessed level of received knowledge of SOs about care and services was low (mean 47.7 ± 25.3 out of 100), with the highest level seen in medication (54.5 ± 31.1) and memory disorder as a disease (54.3 ± 30.3) and the lowest level in the services provided at home for PwMDs (45 ± 30.6) and generally for SOs (38.5 ± 31.7). SOs assessed the received knowledge as being understandable to a moderate degree (53.7 ± 25.5). More knowledge could be delivered to PwMDs to manage in their homes and especially to SOs to take care of PwMDs. New educational solutions could be created aimed at improving the understandability of the knowledge.

Understanding significant others’ experience of aphasia and rehabilitation following stroke

Purpose: It is currently unknown how rehabilitation services contribute to significant others’ adjustment to stroke with aphasia since their experience of rehabilitation has not been studied before. The purpose of this study was thus to understand significant others’ experience of aphasia rehabilitation within the context of post-stroke rehabilitation. Methods: Individual interviews were carried out with 12 significant others of persons who became aphasic as a result of a stroke and were discharged from rehabilitation in the past 3 months. Data were analyzed with a grounded theory approach. Results: “Being centered on the aphasic person” was the core category triggered by the significant other’s perception of the stroke survivor’s vulnerability and his/her feelings of attachment towards that person. Through their interactions with professionals, significant others assumed that rehabilitation was also centered on the aphasic person; a perspective that was reinforced. Consequently, significant others participated in rehabilitation as caregivers and expected rehabilitation to meet their caregiver needs but not other personal and relational needs. Their appraisal of rehabilitation was thus related to the satisfaction or not of caregiver needs. Conclusions: With a greater sensitivity to significant others who focus on the stroke survivor and disregard their own needs, rehabilitation professionals and especially speech-language therapists, can assist families in reestablishing communication and satisfying relationships which are affected because of aphasia.Implications for RehabilitationThis qualitative study shows that significant others of aphasic stroke survivors experience rehabilitation as services focused on the person who had the stroke.Significant others’ satisfaction with rehabilitation is not related to the fulfillment of their personal (e.g. resuming their activities) and relational needs (e.g. good communication with the person with aphasia).When offering interventions targeting significant others’ needs, rehabilitation professionals should emphasize the rationale for these interventions so that significant others grasp the intention and potential benefits of these offers.

Communication changes and SLP services according to significant others of persons with aphasia

Background: Significant others are important to persons with aphasia. For several reasons they should be involved in speech-language pathology (SLP) services, including acquiring facilitating communicative strategies and receiving support. In order to further adapt SLP services there is a need to know the perceptions and views of the significant others. Little is known about how they perceive changes in communication as well as received SLP services and in what way they want to be involved in these services. Aims: The study aimed to investigate which communicative changes significant others of persons with aphasia had experienced after a stroke event and to what extent these changes were experienced. A further aim was to describe the significant others' experiences of SLP services and their motivation to participate in these services. Finally, the significant others' experiences were compared in terms of sex, age, type of relationship, time since stroke onset, and type and severity of aphasia. Methods & Procedures: An 80-item study-specific questionnaire was answered by 173 significant others of persons with aphasia living throughout Sweden (response rate 69%). Of these, 33% were male and 67% female. Mean age was 64.2 years (range 33–87 years) and 85.5% of the participants were a cohabiting partner to a person with aphasia. Outcomes & Results: A total of 64% of participants perceived their conversations as being less stimulating and enjoyable compared with conversations before stroke onset. Aphasia was considered a substantial or very substantial problem by 64%. The participants took on an increased communicative responsibility, and 70% had changed their communicative behaviour in order to facilitate conversations. A total of 75% (n = 130) had met with the SLP of the person with aphasia. Of those, 63% perceived their own support from SLP services to be adequate; 87% considered language ability training as the most important SLP service. Type and severity of aphasia were especially related to the communicative experiences of the participants and their motivation to be involved in SLP services. Conclusions: The substantial decrease from pre- to post-stroke regarding enjoyment and meaningfulness of conversations suggests the need to further improve SLP services in order to help the people in question communicate at an optimal level. We suggest that clinicians should put more emphasis on explaining the benefits and availability of different kinds of aphasia rehabilitation services, such as functional communication training and communication partner training in addition to language ability training.

Lived experience of significant others of persons with diabetes

To elucidate the lived experience of being a significant other of a person with diabetes. A person's illness has consequences not only for the affected. Despite an increasing number of studies on significant others, there have been few about the experience of being a significant other of a person with diabetes. Phenomenological-hermeneutic approach. Fifteen significant others of persons with diabetes were interviewed. The interviews were conversational, starting with an open question. They were audiotaped and transcribed verbatim. The texts were analysed and interpreted. The meaning of the lived experienced as narrated by the significant others is presented by way of four major themes: living in concern about the other's health, striving to be involved, experiencing confidence and handling the illness. Many significant others said that they lived a normal life and had come to accept diabetes as a normal part of life. At the same time, the significant others experienced sorrow when they saw the health of the person with diabetes deteriorate over time. Living near a person with diabetes meant being constantly attentive to how the person was feeling. The significant others wanted to be involved in the illness by the persons with diabetes and healthcare staff. They felt confidence both in the way the person with diabetes handled the illness and in the ongoing research about diabetes. The significant others had found ways to handle the illness but lacked support from healthcare staff. Nurses need to provide support for significant others as well as good caring for the patients and this requires a profound understanding of significant others from their own perspective.

Predictors of well-being among significant others of persons with multiple sclerosis

Objective To examine patient and significant other characteristics as predictors of significant other well-being. Methods A total of 74 persons with multiple sclerosis (MS) and their significant others participated. Executive functioning was measured using neuropsychological tests. Awareness of cognitive deficit was measured as the discrepancy between the patient's reports of their abilities and objective test results. Awareness of functional deficit was measured as the discrepancy between the patient's and significant other's reports of the patient's functional abilities. Patient neurobehavioral disturbance was measured using a significant-other rated questionnaire. Significant other perceived social support and well-being (ie, psychological distress, life satisfaction, and general health status) were assessed using questionnaires filled out by the significant other. Results Executive dysfunction, neurobehavioral disturbance, and lack of awareness of functional deficits in patients were associated with poor well-being outcomes; whereas, lack of awareness of cognitive deficits was only weakly related to well-being. Social support was associated with positive well-being outcomes. Conclusions Diminished insight regarding functional limitations may increase significant others’ supervisory burden as patients attempt activities independently, whereas lack of awareness of cognitive deficits may not be directly associated with behavior-relevant impairments that significant others find distressing. Social support appears to be a powerful aid in diffusing the distress among significant others of MS patients. Multiple Sclerosis 2007; 13: 238–249. http://msj.sagepub.com

Significant others of persons with mental health problems: The testing of a questionnaire on the burden of significant others

The importance of family and friends for patients with mental health problems has been recognized over the past few years. Significant others (SO) of patients admitted to a psychiatric ward specializing in affective disorders and suicide prevention filled in a self-rating questionnaire concerning their burden as SOs, the Involvement Evaluation Questionnaire (IEQ). The aims of this study were twofold: first, to test whether the questionnaire IEQ was applicable in psychiatric services in Sweden and second, to relate the IEQ results to socio-demographic data and diagnosis of the patients, and also to the situation of the SOs. We found the questionnaire useful. Nearly half of the SOs had difficulties in accepting and handling the patient's psychiatric problems. More than half had been worried that the patient was going to harm him/herself and because of this had kept close watch on the patient. Almost all SOs worried about the patient's general health and future. Most of them felt obliged to intervene in the patient's activities of daily living. More than half worried about the kind of medical and psychological treatment the patient was receiving. Most SOs concluded that they were burdened by their engagement in the patient. Our results were compared with a European study of schizophrenic patients also investigated with the IEQ. The comparison indicated that the perceived burden on SOs of these different kinds of psychiatric patients can be equally burdensome. SOs need information, help and support in their difficult support role. This questionnaire could be useful in finding new routines for increasing the involvement by SOs in the treatment of patients with mental health problems.

Borderline Personality Disorder: A View from the Trenches, with Special Attention to its Impact on Family Transition

This article is intended for reading by people who seek to understand the contradictory, unpredictable, and frustrating phenomenon of Borderline Personality Disorder (BPD). Readers may include clinicians, therapists, and family mediators. Since many observations in this article are based on the experience of the clinical author, coming as they do “from the trenches”, they may not appear in other scholarly works. It is expected that readers may also include lay people who have an interest in BPD, particularly spouses and significant others of persons with borderline processes. People who deal with persons with BPD may develop strong emotional and behavioural responses that can be as difficult, or perhaps more difficult, to bear than those borne by those with the disorder themselves. People who interact with persons with borderline processes need to understand that the disorder varies, is seen differently by different observers, and is difficult to define or diagnose. The descriptions sometimes vary among experts. Whenever technical terms appear, we have tried to translate them into generally accessible language. But often the only accurate term is the technical one, and lay language furnishes only an approximation. Therefore, the casual reader may encounter more jargon than might seem desirable. Still, the objective is to provide a resource to professionals, as well as one that can be read and understood by lay people.

Coping Among Spouses or Significant Others of Persons With Multiple Sclerosis

The purpose of this study was to identify coping strategies used by a sample of 156 spouses/significant others of persons with multiple sclerosis (MS) in meeting the challenges of living with and/or caring for someone with MS. An additional purpose was to determine if differences existed among the coping strategies with respect to frequency of use, dependency status of the person with MS, the presence or absence of illness in the spouse/significant other, and the latter's gender and relationship to the person with MS. Low alpha coefficients were obtained on most of the Jalowiec Coping Scale (JCS) subscales. Subsequent factor analysis resulted in six factors. Two were problem focused (Planning, Confrontive); three were emotion focused (Ambivalence, Escape/Anger, Distancing); and one was problem and emotion focused combined (Accepting). The factors represented 31 of the 60 JCS items. Alpha coefficients were between .66 and .76. Significantly more problem-than emotion-focused coping dimension strategies were used. More coping strategies were used from the Planning. Distancing, and Escape/Anger dimensions when persons with MS were dependent rather than independent; the Distancing dimension when the spouse/significant other was also ill; and the Planning dimension when the spouse/significant other was a man. Spouses used more coping strategies from the Ambivalence and fewer from the Distancing and Escape/Anger dimensions than did significant others.

Significant Others of Persons with AIDS

Abstract Any life-threatening condition is likely to have an impact on those with emotional or psychological attachment to the affected person. It was anticipated that the nature of the AIDS infection and its frequent association with specific life-styles might have some unique, and as yet poorly identified, bearing on the experiences of significant others. This study was an initial attempt to address the question, “What are the experiences, concerns, and needs of adult significant others of persons diagnosed with AIDS?” using Grounded Theory methods. Ten adult significant others (parents, siblings, friends, and partners), ages 32 to 74, were interviewed in-depth to elicit descriptions of their experiences. Transcripts of interviews were coded and analyzed substantively for major descriptive categories. Seven broad categories were identified and labeled as: “Disclosure,” “Hope vs. Hopelessness,” “Changing Relationships,” “Character Portrayal,” “Advocacy,” “Motivation,” and “Geographical Separation.” Subjects universally reported their experiences as different from any previous experiences. The course of the disease process, the lack of public knowledge and acceptance, and their own needs for community involvement were some of the differences identified. Implications include the need for recognition of and sensitivity to this population as one with often unmet, unique concerns, and the need for future study.

Significant others of persons with AIDS: A preliminary study

Significant others of persons with AIDS: A preliminary study

When a Loved One has AIDS: Care for the Significant Other

1. The significant others of persons with AIDS, whether they assume the role of primary caregiver or not, have a number of unique experiences, concerns, and needs specifically related to their situations. 2. During the initial period following the diagnosis of a loved one, the significant others indicated their primary needs as sensitivity to their situations, assistance in securing appropriate information, and psychological support in dealing with uncertainty, and a general sense of dread. 3. Other common concerns and needs expressed by the significant others included support and reassurance, assistance in adjusting to a myriad of personal relationship changes, and help in meeting needs for active involvement in some form of AIDS-related work.

Implications for therapy with significant others of persons with AIDS

Implications for therapy with significant others of persons with AIDS