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Chronic Sorrow: The Lived Experience of Parents of Chronically Mentally Ill Individuals
Abstract
This study investigated the incidence of chronic sorrow in parents of chronically mentally ill children. A convenience sample of 10 parents (four couples and two mothers) of adult children diagnosed with either schizophrenia or bipolar disorders were interviewed using the Burke/NCRCS Chronic Sorrow questionnaire (Caregiver Version). Findings showed that 8 out of 10 parents experienced chronic sorrow. These grief-related feelings were most often triggered by the unending caregiving responsibilities parents described. Those who evidenced chronic sorrow indicated that healthcare professionals could assist them by providing information about their child's illness and by involving them in the treatment process.
... Chronic sorrow has been studied in different populations of people who suffer from or support people who suffer from chronic, mental,and somatic illnesses such as children with mental disability (Olshansky, 1962), epilepsy (Hobdell et al., 2007), MS (Isaksson et al., 2007), dementia (Paun et al., 2015), diabetes (Bowes et al., 2009), sickle cell disease (Olwit et al., 2018), schizophrenia (Chang et al., 2018;Olwit et al., 2015), and bipolar disorder (Eakes, 1995). In mental health, research about chronic sorrow with reference to SMI is limited to caregivers of people with schizophrenia or bipolar disorder which receive professional care. ...
... In mental health, research about chronic sorrow with reference to SMI is limited to caregivers of people with schizophrenia or bipolar disorder which receive professional care. Studies involve small (convenience) samples of 10 (Eakes, 1995) to 18 persons (Olwit et al., 2015). Research confirms that family caregivers of relatives with mental illness experience chronic sorrow. ...
... These findings somewhat differ from the topics described in the middle-range theory of chronic sorrow (Eakes et al., 1998). In the middle-range theory of chronic sorrow, the experience of a single loss or receiving the initial diagnosis is considered the primary antecedent to the grief-related feelings associated with daily re-experiences in specific situations and circumstances (Eakes, 1995;Eakes et al., 1998). But SMI is not a diagnose with a chronic and predictable course and ending. ...
This study explores loss experiences and trigger events of chronic sorrow among family caregivers who support a relative with a severe mental illness. Chronic sorrow is a theoretical concept describing a normal grief response associated with an ongoing loss. A total of 39 Dutch family caregivers were interviewed. They report experiencing three kinds of loss: loss of a person, loss of the former relationship, and loss of a normal life. Seven specific trigger events were identified: (a) confrontation with symptoms, (b) comparisons with developmental, social and personal norms, (c) role change, (d) deterioration, (e) hospitalization, (f) disregard and disrespect by health professionals, and (g) worries and memories. This paper suggests that mental health professionals should realize that they can (unintentionally) trigger chronic sorrow by disregarding and/or disrespecting family caregivers. Awareness of the mechanism can lead to greater understanding within and improvement of the partnership between family caregivers and health professionals.
... In addition to the emotions that parents feel when dealing with a child with conduct problems, chronic sorrow and burden are other constructs that have been investigated. Eakes (1995) defines chronic sorrow as a "pervasive sadness that is permanent, periodic, and potentially progressive in nature" (p. 78). ...
... 78). Critical attributes of chronic sorrow are as follows: a perception of sorrow or sadness over time in a situation that has no predictable end; the sadness or sorrow is cyclic or recurrent; the sorrow or sadness is triggered either internally or externally and brings to mind the person"s loss and fear; and the sadness is progressive and can intensify even years after the initial sense of loss (Eakes, 1995). One may infer that chronic sorrow closely resembles depressive symptoms which may also be characteristic of a caregiver with a mentally ill child. ...
... Converting the sample means to zscore equivalents based on the Henry and Crawford data resulted in z-values, all of them positive and greater than 2.0, which were as follows: Depression, z = 2.61; Anxiety, z = 2.41; and Stress, z = 3.49. This finding was expected as the caregivers are dealing with children with behavioral issues, which current literature has shown to be associated with negative emotions (Eakes, 1995;Lefley, 1997). The DASS scoring instructions divide the scores for each scale into the following categories: normal (0-9 depression; 0-7 anxiety; 0-14 stress), mild (10-13 depression; 8-9 anxiety; 15-18 stress), moderate (14-20 depression; 10-14 anxiety; 19-25 stress), severe (21-27 depression; 15-19 anxiety; 26-33 stress), and extremely severe (28+ depression; 20+ anxiety; 34 stress). ...
... Orang tua akan merasa bersalah, marah, lelah dan stres dalam menghadapi kondisi tersebut, oleh karena itu penyakit leukemia pada anak akan memberikan pengaruh dalam beberapa hal yang dialami orang tua yaitu dalam hal psikologis, emosi, ekonomi dan sosial (Jones, B 2012;Mussato 2006). Berbagai situasi ini menyebabkan orang tua anak dengan penyakit leukemia merasakan kesedihan yang berulang, mendalam dan permanen (Eakes 1995). Hal ini akan berpengaruh terhadap perilaku orang tua. ...
... Ibu dengan anak leukemia memiliki tingkat stres yang tinggi (Masa'Deh, R., Collier, J., and Hall 2012) dan berbagai permasalahan psikologis yang menyertai (Mussato 2006). Menurut Eakes (1995) orang tua dengan anak penderita penyakit kronis memiliki berbagai permasalahan psikologis seperti shock, tidak percaya, berduka, marah, frustasi, sedih, bingung dan putus asa yang berlangsung mendalam, berulang, dan permanen. Teori keperawatan chronic sorrow menyebutkan bahwa salah satu manajemen internal dalam diri seseorang yang mengalami kesedihan kronis adalah dengan proses kognif, sehingga dari pernyataan ini nampak bahwa dengan manajemen internal yang kurang baik, dilihat dari self efficacy yang rendah akan memunculkan kesedihan yang terus berulang. ...
Introduction: Children with leukemia have a poor quality of live. A long term periode of care, treatment, side effect of treatment and the symptom of the leukemia disease will have an impact on leukemia children quality of life. Parents have an important role in meeting the basic needs of the child by stimulation, emotion and physical. With the fulfillment of the basic needs of children, the quality of life of children with leukemia will increase.Methods: Design used in this study was an observational analytic in Hematology room Dr. Soetomo Hospital. The population was mother of leukemia children Bona 1 hematology room in Dr Soetomo Hospital. Conducted on 17th April- 17th May 2014. Consecutive sampling was used in this study. Sample were 20 mother who met in inclusion criteria. Independent variables were mother’s characteristics, self efficacy source, family centre care, Parental Self efficacy and dependent variables were mother’s behaviour. Data was collected using quetionnaire and analyzed using PLS (Partial Least Square) Regression.Results: Result showed that sources of self-efficacy influence on self-efficacy, self efficacy and mother’s characteristics directly affects the mother’s behaviour. Family centered care can’t directly affect mother’s behaviour.Discussion: It can be concluded that mother’s behaviour model in stimulating, loving and physical caring children with leukemia can be formed from mother’s characteristics, self efficacy source and Parental self efficacy. Parental self efficacy can be increased especially by improving coping mechanisms and vicarious experience.
... Assim, a Teoria de Médio Alcance da Tristeza Crônica foi desenvolvida de forma indutiva, usando a análise de conceito, ampla revisão da literatura, revisão crítica da pesquisa e validação em estudos qualitativos e quantitativos de várias situações de perda. 10,15,16,[18][19][20][21] Quanto ao critério de consistência interna, o modelo de análise e avaliação sugere que, para que esse parâmetro seja mantido, é necessário analisar os aspectos semânticos e estruturais do contexto e do conteúdo da teoria. 11 Porém a Teoria da Tristeza Crônica atende ao critério de consistência interna. ...
... 10 Nessa perspectiva, a teoria influencia diversas intervenções de enfermagem e é amplamente utilizada. Uma série de estudos, que formam a base da Teoria de Médio Alcance da Tristeza Crônica, 10,15,16,[18][19][20][21][22][23][24] estão repletos de aplicações práticas. ...
Objective:
to analyze the Theory of Chronic Sorrow, following the model of analysis and evaluation of Nursing theories proposed by Jacqueline Fawcett.
Method:
a reflective study, developed through the investigation of the Theory of Chronic Sorrow and its application in the nursing practice. The sample consisted of eighteen studies that used the theory as a reference. A Model for Analysis and Evaluation of Nursing Theories was used, which involved, in the first stage, a detailed examination of the referred theory in terms of scope, context and content. In the second stage - evaluation - the criteria of clarity, significance, internal consistency, parsimony, testability, empirical adequacy and pragmatic adequacy were used.
Result:
This is a mid-range theory that is predictive in relation to the scope. As for the context, it is based on the stress and adaptation model. The content presents well-defined and interrelated concepts. The concepts of meta-paradigm have significance, internal consistency and are operable. It features a usable instrument: The Chronic Sorrow Questionnaire, reliable as a tracking tool to detect the presence of chronic sorrow. The theory is parsimonious, it can be used with chronic diseases and directed to people in the final phase of life and their family caregivers.
Conclusion:
this study may contribute to indicate the use of the Theory of Chronic Sorrow and support nursing care in promoting effective strategies and, consequently, improve the comfort of patients and their families in coping with chronic sorrow.
... Orang tua akan merasa bersalah, marah, lelah dan stres dalam menghadapi kondisi tersebut, oleh karena itu penyakit leukemia pada anak akan memberikan pengaruh dalam beberapa hal yang dialami orang tua yaitu dalam hal psikologis, emosi, ekonomi dan sosial (Jones, B 2012;Mussato 2006). Berbagai situasi ini menyebabkan orang tua anak dengan penyakit leukemia merasakan kesedihan yang berulang, mendalam dan permanen (Eakes 1995). Hal ini akan berpengaruh terhadap perilaku orang tua. ...
... Ibu dengan anak leukemia memiliki tingkat stres yang tinggi (Masa'Deh, R., Collier, J., and Hall 2012) dan berbagai permasalahan psikologis yang menyertai (Mussato 2006). Menurut Eakes (1995) orang tua dengan anak penderita penyakit kronis memiliki berbagai permasalahan psikologis seperti shock, tidak percaya, berduka, marah, frustasi, sedih, bingung dan putus asa yang berlangsung mendalam, berulang, dan permanen. Teori keperawatan chronic sorrow menyebutkan bahwa salah satu manajemen internal dalam diri seseorang yang mengalami kesedihan kronis adalah dengan proses kognif, sehingga dari pernyataan ini nampak bahwa dengan manajemen internal yang kurang baik, dilihat dari self efficacy yang rendah akan memunculkan kesedihan yang terus berulang. ...
ABSTRAK Pendahuluan: Anak-anak dengan leukemia memiliki kualitas hidup yang kurang baik. Perawatan dan pengobatan jangka panjang, efek samping dari pengobatan dan gejala dari penyakit leukemia akan berdampak pada kualitas hidup anak dengan leukemia. Orang tua memiliki peran penting dalam memenuhi kebutuhan dasar anak akan Asah, Asih dan Asuh. Terpenuhinya kebutuhan dasar anak dengan baik, kualitas hidup anak dengan leukemia akan meningkat. Metode: Desain yang digunakan dalam penelitian ini adalah observasional analitik. Populasi adalah ibu dari anak-anak leukemia di ruang hematologi anak, dilakukan pada selama 1 bulan tahun 2014. pengambilan sampel berturut-turut digunakan dalam penelitian ini. Sampel sejumlah 20 ibu yang memenuhi kriteria inklusi, variabel independen adalah karakteristik ibu, sumber efikasi diri, perawatan berpusat keluarga, efikasi diri orang tua dan variabel dependen adalah perilaku ibu dan kualitas hidup anak. Data dikumpulkan dengan menggunakan kuesioner dan dianalisis menggunakan PLS (Partial Least Square). Hasil: Hasil penelitian menunjukkan bahwa sumber efikasi diri berpengaruh terhadap efikasi diri, Efikasi diri dan karakteristik ibu berpengaruh langsung pada perilaku ibu. Perawatan berpusat keluarga tidak dapat secara langsung mempengaruhi perilaku ibu. Diskusi: Dapat disimpulkan bahwa model perilaku ibu dalam pemenuhan kebutuhan asah, asih dan anak dengan leukemia dapat dibentuk dari karakteristik ibu, sumber efikasi diri dan Efikasi diri orang tua. Efikasi diri orangtua dapat ditingkatkan terutama dengan meningkatkan mekanisme koping dan pengalaman orang lain. Kata kunci: stimulasi, emosi, perilaku fisik ibu, anak-anak leukemia kualitas hidup ABSTRACT Introduction: Children with leukemia have a poor quality of live. A long term periode of care, treatment, side effect of treatment and the symptom of the leukemia disease will have an impact on leukemia children quality of life. Parents have an important role in meeting the basic needs of the child by stimulation, emotion and physical. With the fulfillment of the basic needs of children, the quality of life of children with leukemia will increase. Method: Design used in this study was an observational analytic. The population was mother of leukemia children. Conducted a month on 2014. Consecutive sampling was used in this study. Sample were 20 mother who met in inclusion criteria. Independent variables were mother's characteristics, self efficacy source, family centre care, Parental Self efficacy and dependent variables were mother's behaviour and child quality of life. Data was collected using quetionnaire and analyzed using PLS (Partial Least Square) Regression. Result: Result showed that sources of self-efficacy influence on self-efficacy, self efficacy and mother's characteristics directly affects the mother's behaviour. Family centered care can't directly affect mother's behaviour. Discussion: It can be concluded that mother's behaviour model in stimulating, loving and physical caring children with leukemia can be formed from mother's characteristics, self efficacy source and Parental self efficacy. Parental self efficacy can be increased especially by improving coping mechanisms and vicarious experience.
... Orang tua akan merasa bersalah, marah, lelah dan stres dalam menghadapi kondisi tersebut, oleh karena itu penyakit leukemia pada anak akan memberikan pengaruh dalam beberapa hal yang dialami orang tua yaitu dalam hal psikologis, emosi, ekonomi dan sosial (Jones, B 2012;Mussato 2006). Berbagai situasi ini menyebabkan orang tua anak dengan penyakit leukemia merasakan kesedihan yang berulang, mendalam dan permanen (Eakes 1995). Hal ini akan berpengaruh terhadap perilaku orang tua. ...
... Ibu dengan anak leukemia memiliki tingkat stres yang tinggi (Masa'Deh, R., Collier, J., and Hall 2012) dan berbagai permasalahan psikologis yang menyertai (Mussato 2006). Menurut Eakes (1995) orang tua dengan anak penderita penyakit kronis memiliki berbagai permasalahan psikologis seperti shock, tidak percaya, berduka, marah, frustasi, sedih, bingung dan putus asa yang berlangsung mendalam, berulang, dan permanen. Teori keperawatan chronic sorrow menyebutkan bahwa salah satu manajemen internal dalam diri seseorang yang mengalami kesedihan kronis adalah dengan proses kognif, sehingga dari pernyataan ini nampak bahwa dengan manajemen internal yang kurang baik, dilihat dari self efficacy yang rendah akan memunculkan kesedihan yang terus berulang. ...
Introduction: Children with leukemia have a poor quality of live. A long term periode of care, treatment, side effect of treatment and the symptom of the leukemia disease will have an impact on leukemia children quality of life. Parents have an important role in meeting the basic needs of the child by stimulation, emotion and physical. With the fulfillment of the basic needs of children, the quality of life of children with leukemia will increase. Method: Design used in this study was an observational analytic in Hematology room Dr. Soetomo Hospital. The population was mother of leukemia children Bona 1 hematology room in Dr Soetomo Hospital. Conducted on 17th April- 17th May 2014. Consecutive sampling was used in this study. Sample were 20 mother who met in inclusion criteria. Independent variables were mother’s characteristics, self efficacy source, family centre care, Parental Self efficacy and dependent variables were mother’s behaviour. Data was collected using quetionnaire and analyzed using PLS (Partial Least Square) Regression. Result: Result showed that sources of self-efficacy influence on self-efficacy, self efficacy and mother’s characteristics directly affects the mother’s behaviour. Family centered care can’t directly affect mother’s behaviour. Discussion: It can be concluded that mother’s behaviour model in stimulating, loving and physical caring children with leukemia can be formed from mother’s characteristics, self efficacy source and Parental self efficacy. Parental self efficacy can be increased especially by improving coping mechanisms and vicarious experience.
... chronic sorrow is the recurring painful confrontation with current reality and the life parents had hoped for their child, their family, and themselves (Eakes, 1995;Eakes et al., 1998;Roos, 2018). The concept was first introduced by Olshansky (1962), who argued that chronic sorrow is a natural, understandable, and non-pathological response in parents to an abnormal situation. ...
Chronic sorrow involves parents’ enduring grief due to their child’s disability. This stems not only from the recurring painful reality parents face, which differs from the life they had hoped for their children, families, and themselves but from also being confronted with societal and personal norms and expectations they cannot meet. There is a lack of research on the lived experiences of parents’ chronic sorrow. An Interpretative Phenomenological Analysis (IPA) study involving six parents with severely disabled children explored what it is like for parents to confront being “different.” Besides sorrow, the parents experienced intense ambiguity, guilt, and uncertainty while navigating societal expectations and their own perceptions of their children. Their ideas of parenthood and their self-identity as parents proved central to their strategies. This study provides insight into the intricacies of this particular aspect of chronic sorrow in parents, with relevance for research and practice.
... The essence of chronic sorrow is the confrontation between current and desired reality-a discrepancy from personal, developmental, and social norms. Although parents may come to terms with the illness or the disability of their child, they may still experience sorrow in periodic cycles that can be triggered by new events, such as developmental milestones observed in other children (Eakes, 1995;Eakes et al., 1998;Roos, 2018). Parents mourn the impact of the disability on their child's life, their own life as parents, and the well-being of their family. ...
... Many have focused on lived experience discourse to recognize that lives are involved, affected, are not just diagnoses and illnesses to be cured, surveilled, and coerced but people to be heard to improve systems and services (Bradstreet, 2016;Deegan, 2007;de Jager et al., 2016). The people with lived experience (PWLE) discourses become murky and opaque as they have been engulfed by pathologizing biomedical psychiatric discourses to rationalize these services, reinforce notions of personality disorder and chronic illness, while sometimes even reverting the focus back onto the mental health professionals themselves or to rationalize coercion and violence (Eakes, 1995;Fallon, 2003;Drury, Francis, & Dulhunty, 2012;Light et al., 2014). PWLE discourses in mental health literature and elsewhere are often fashioned to both constitute what perspectives can be considered valid and to legitimize these avowals in relation to existing and co-constituted, historical Eurocentric/American, colonial systems of biomedical, criminal, and immigration identification/representation. ...
The term “lived experience” has been used widely in mental health literature and research to claim a proximity to authority and authenticity in relation to voice and identity. Through an examination of literature from the perspectives of Critical Mental Health, Mad Studies, and Critical Disability Studies, “people with lived experience” discourses are contested for perpetuating social relations of white supremacy. The ethics of “lived experience” discourses are questioned for their role in (re)positioning of modernistic ideas of experience and Eurocentric systems of identification as dominant. “Lived experience” in mental health research is often understood as inseparably connected to those who
have used or been coerced by Western models of mental health services, often those specifically formed by or with biomedical psychiatry. This omits appreciations of the over-criminalization and dehumanization of racialized people and indigenous peoples who struggle with distress and suffering. Racialized and indigenous peoples often find themselves at the mercy of criminal justice and immigration systems, while mental health services are differentially accessed or imposed. Mental health for racialized and indigenous peoples is often referenced to support prosecution, to establish threat, risk, biomedical inferiority, and ideas of dangerousness. While contributions from Mad Studies
and Critical Disability Studies have helped many to appreciate the value of the voices of those who have experienced the effects of services and systems, the ethics of self-identification alongside systemic and structural analyses of identification/representation for racialized and indigenous peoples are often inadequate. The divergent identification/representation processes, practices, and technologies that essentialize criminality, alienism, and biological inferiority for racialized and indigenous peoples are analyzed through an attention to the erasure and devaluing of the
repercussions of intergeneration colonial violence and subjugation. An appreciation of identity and experience as a social, historical, and political confluence is offered as an ethical response to the technologies of identification/representation that order hierarchies of voice and agency and attempt to silence ongoing practices of racist and eugenic colonial violence.
... was nearly equal to that for affective-oriented coping method (37.42±11.40%). Many studies indicated the need for balance between problem-oriented and affective-oriented coping methods.10,17 Others consider problem solving a pre requisite for accommodation and successful dealing with the problems.15,18 ...
Background: Assessment of coping strategies is important in planning of health education programs to enhance coping. Objective: The aim of the present work was to assess the knowledge and attitude of mothers concerning cardiac problems, to assess the coping strategies of mothers of children with cardiac problems, and to identify some predictors of the coping strategies. Methods: A cross sectional study of 187 mothers of children with cardiac problems who attended the cardiology school health insurance clinic of Sporting Student’s Hospital in Alexandria with their children within a period of one month was conducted. Every mother was subjected to the modified Jalowiec coping scale to assess the coping strategies. Knowledge and attitude of the mothers were assessed through a pre-designed interviewing questionnaire. Results: The results showed marked variability in correct responses to various statements about cardiac problems. However, most of mothers showed poor knowledge (87.17%)and about half of them (46.0%) showed negative attitude. These figures were significantly higher among mothers of children with congenital heart defects (CHD) than among those whose children suffer from rheumatic heart disease (RHD). The most commonly used coping method was "Pray; trust in god" (92.5%), followed by "Accept the situation as it is" (88.0%), and "Hope that things will be better" (73.5%). More than half of the mothers (55.5%) reported that they always "Resign themselves to the situation because it is their fate" while 28.0% reported that they always "Worry." The percent mean score of use of problem-oriented coping methods was nearly equal to that for affective-oriented coping methods. Duration of illness (p
... [11][12][13][14] This literature has drawn attention to multiple burdens associated with caring for a family member who has a mental illness including: financial challenges, physical and psychological demands associated with care-giving and advocacy, disruption of household routines, restriction of social activities, impaired relationships with others outside of the family, emotional distress associated with difficult and at times bizarre behaviours, as well as secondary distress associated with the reactions of others both within and outside of the family. Several studies [15][16][17] have also drawn attention to an ongoing pattern of grief associated with parenting a child with mental illness. Given the uncertain prognosis and unpredictable course associated with mental illnesses like schizophrenia and schizoaffective disorder, parents also worry about how their child's needs will be met when they are no longer living or are no longer able to provide for, and take care of, their child. ...
A qualitative narrative and cross-narrative research method was used to explore how six mothers of adult children with schizophrenia or schizoaffective disorder experienced personal growth and change. Twenty-four largely unstructured interviews were conducted over the course of two years. The following eight common themes emerged across the narratives: Enduring sadness and loss, Distress and struggle, Fluctuations in hope, Feelings of guilt and regret, Concern about their child’s future, Impact of their child’s mental illness on their other children, Commitment to helping/action, and Personal and relational change. The changes reported by these mothers were set against the backdrop of the nonfinite losses that characterized the realities and uncertainties of their lives since the onset of their child’s mental illness. Implications for mental health practice are addressed based on these findings.
... In Karnataka, frequency of leukemia is quite high in Belgaum district when compared to other districts and totally absent in Bidar district. [4] It is reported that parents of chronic ill children experience chronic grief [5] and low quality of life. [1] Available literature has also reported on experiences of mothers from developed countries. ...
Introduction: Childhood cancer is the leading cause of death among children. Leukemia is one of the most common childhood cancers.
Objective: The objective of this study was to explore the experiences of mothers on parenting children with leukemia.
Materials and Methods: A qualitative approach with phenomenological design was used. To collect depth information from the mothers of children with leukemia, purposive sampling technique was adopted. Data were collected from ten mothers. Semi-structured interview schedule was used to collect the data. Data were analyzed using Husserl's method.
Result: The themes derived are the pivotal moment in life, the experience of being with a seriously ill child, having to keep distance with the relatives, overcoming the financial and social commitments, responding to challenges, experience of faith as being key to survival, health concerns of the present and future, and optimism.
Conclusion: The study concluded that chronic illness such as leukemia in children results in negative impact on the child and on the mother.
... In view of the many hopes destroyed because of the illness and the changed personality of the patient, grief and feelings of loss are experienced as well (Tuck, du Mont, Evans, & Shupe, 1997). Parents' worries regarding the future, however, are often related to their permanent responsibility for the patient and the question of who will take care of the patient if they no longer can, if, for instance, they themselves become in need of care or die (Eakes, 1995;. ...
This is a follow-up study aimed at investigating subjective burden in parents of patients with schizophrenia during a 12-month period. Using a narrative interview technique, parents were questioned regarding the subject of illness-related burden; follow-up interviews were conducted after 6 and 12 months, respectively. Forty-seven interview sets were examined with the aim of determining different types of burden development. The analysis yielded the following six developmental types: (1) constantly high level of burden; (2) increased burden; (3) reduced burden; (4) shifting burden; (5) preeminence of other burdens; and (6) constantly low level of burden. In general, changes in the parents' burden level are closely interconnected with the illness curve of the patients, with 40% of the study participants experiencing a constantly high level of burden during the course of the study. The results suggest that parents of continuously and severely affected patients are overloaded with their long-term caring tasks. Particularly for these extremely strained parents, practical and psychologic assistance should be provided.
... La literatura es amplia en la evidencia de cómo el cuidador familiar de un niño con una ECNT afronta dificultades que alteran su vida (3)(4)(5)(6)(7). La experiencia de cuidar se relaciona con la formación, la información, el apoyo emocional y social, las ayudas económicas, el afrontamiento personal y la disponibilidad de servicios de tregua y de ayuda domiciliaria. ...
p> Objetivo Determinar la habilidad de cuidado de cuidadores familiares de niños con cáncer.
Métodos Estudio descriptivo exploratorio de abordaje cuantitativo. Se tomó una muestra de 85 cuidadores que una vez caracterizados respondieron el inventario de habilidad de cuidado adaptado para el cuidador familiar de personas con enfermedad crónica no trasmisible.
Resultados Se caracterizan los cuidadores familiares por edad, género, nivel socioeconómico, escolaridad, relación con el familiar cuidado, elementos de soporte social, tiempo de experiencia y carga del cuidado generada por la discapacidad del receptor. Se revisó el nivel total de habilidad de cuidado y el de cada una de sus dimensiones: conocimiento, valor y paciencia.
Conclusiones Los cuidadores principales son en su mayoría mujeres, madres de los niños con cáncer. El 70,6 % de ellas carece de la habilidad suficiente para cuidar a sus hijos con cáncer, y 31,8 % tienen un nivel mínimo de habilidad lo que sumado a las demandas de afrontar la realidad de tener un hijo con cáncer, puede ser devastador para los cuidadores familiares y generar alto riesgo para los niños a su cargo.</p
... Since the 1990s chronic sorrow has been recognized in patients with chronic diseases such as multiple sclerosis Hainsworth, 1994), cancer (Eakes, 1993) and Parkinson's (Lindgren, 1996), also in spouses of patients with multiple sclerosis (Hainsworth, 1996) and Parkinson's (Lindgren, 1996) and furthermore in wives of chronically mentally disabled men (Hainsworth, Busch, Eakes, & Burke, 1995). One of the researchers in this group also did a study on parents with chronically mentally ill children (Eakes, 1995). The research team of Burke, ...
... Mothers caring for a child with a chronic illness experience increased distress (Isaacs & Sewell, 2003), similar to grief reactions (Eakes, 1995;Vickers, 2005). Unlike grieving mothers, they also face the recurring disparity between their expectations for their child and the constraints imposed by the disease (Eakes, Burke, & Hainsworth, 1998) and ongoing loss with periodic triggering events (Northington, 2000). ...
Families affected by rare disease experience psychosocial reactions similar to families with prevalent chronic diseases. The ability to respond and manage the condition depends upon psychosocial factors. This phenomenological study of 16 mothers of children with Alagille syndrome explored their lived experience in using online health communications to manage their chronic sorrow. Data consisted of semi-structured interviews analyzed using techniques described by van Manen. Analysis yielded four essential themes: connectedness, online triggers, empowerment, and seasons of online use contributed to online communication essential to a rare disease community. Findings suggest mothers need emotional support and help accessing appropriate online resources.
... Vivir con una enfermedad crónica discapacitante es la experiencia de padecer un trastorno orgánico y funcional que provoca alteraciones en las funciones o estructuras corporales y algún grado de limitación en la actividad de la persona (4). Investigaciones centradas en el estudio de individuos con situaciones vitales crónicas, cónyuges cuidadores de personas con una enfermedad mental y padres de niños con retraso mental, reportan la presencia de una pena recurrente, las manifestaciones de las personas en estas situaciones son descritas como una reacción psicológica denominada duelo disfuncional (5,6). La presencia de estos sen-timientos es una constante durante la vida de las personas con trastornos disfuncionales, sus cuidadores familiares y aquellos que han perdido un ser querido (7). ...
A literature review was conducted for an insight into the progress nursing has made with respect to the care of chronically ill patients, their families and their suffering, as well as the instruments proposed to measure it. The review was based on several descriptors; namely, suffering, instruments, chronically ill, nursing (limited to the chronically ill person who is suffering), and the scale used to evaluate it. The SciELO, NursingConsult, Redalyc, Dialnet, and EBSCOhost databases were searched, and a total of 116 articles were reviewed. Out of that group, 40 articles dealing with chronicity and its emotional impact on persons, suffering, nursing care and the instruments used to measure it were selected. The results of the search show the limited amount of research nursing has done on this topic, although they do underscore how important it is for the discipline to understand the suffering of patients in a chronic condition, so as to provide comprehensive care for the person as a whole, with dignified and humanized treatment, and to reinforce, through research, the care given to patients with physical and emotional suffering.
... This reaction is consistent with Olshansky's (1962) notion of chronic sorrow, which was first reported in parents of youth with mental retardation. Chronic sorrow has since been identified in parents whose adult child has a mental disorder (Eakes 1995; Pejlert 2001). Ambivalence is an important part of family members' grief (e.g., Jones 2004; Miller 1996). ...
Parents and family members whose adult child or relative has a mental illness endure significant losses, to which they respond with grief. Such grief may negatively affect family members’ physical and psychological health and also the relationship with their relative. Yet, research in this field is sparse. Very few studies have examined parents’ loss and grief in the context of the patient being a child or teen. It is not clear the extent to which parents’ loss and grief in response to their child or adolescent’s mental illness is similar or different to the accounts of older parents and family members caring for an adult relative with major psychopathology (e.g., Schizophrenia, Bipolar disorder). Parental loss and grief is not often addressed in child and adolescent mental health services’ provision of care; alarmingly, little is known about how best to support parents who access these services. The present study aimed to bridge this knowledge gap and identify the therapeutic needs of this younger parent population. Comprehensive interviews were conducted with 14 parents and one custodial grandparent of a youth aged 18 years or younger who was currently attending a child and adolescent mental health service. An inductive thematic analysis identified six themes; parents’ narrative of finding out, profound and pervasive loss, complex grief, waning support, the challenges of caregiving and a call for assistance. It can be inferred from these results that youth mental illness can constitute a source of loss and grief for parents. Participants’ loss and grief was largely consistent with the experience of families caring for an adult relative with major psychopathology. Opportunities for mental health practitioners to support families’ loss and grief were identified. Further studies are needed to enhance understanding of this complex and, to a large extent, ignored familial experience. Results do underscore the importance of clinicians acknowledging parents’ loss and grief and working directly with this experience over the course of youths’ treatment, perhaps in conjunction with family psychoeducation approaches.
... Atkinson (1994) compared 25 families in which parents had a son or daughter diagnosed with mental illness, and 50 parents who had lost a family member through death or acquired major brain injury. On formal measures, parent carers experienced a less acute but more ongoing grief: 'chronic sorrow' (Olishansky, 1962; Burke, Hainsworth, Eakes, & Lindgren, 1992; Eakes, 1995) or 'a lifetime of losses' (Johnson, 2001). It is similar to trying to cope with death without the practical, emotional and spiritual support and acknowledgement provided by a funeral ritual. ...
Although not always named, grief is central to the experience of mental illness — for people diagnosed, their families and their friends. Yet grief is almost absent from the literature and practice of mainstream psychiatry. This curious fact led to the writing of this article by two workers and a carer, with editorial and political advice from a consumer, as a small step in the direction of integrating perspectives of workers, carers and consumers. It examines the nature of grief associated with mental illness, its impact on family members, and why mainstream mental health services do not directly address it, with suggestions for some therapeutic ways to conceptualise and work with it.
... Conventional strategies used in outpatient treatment of schizophrenia focus primarily on the individual client rather than on the family unit despite the fact that families of individuals with schizophrenia are involved in critical care-taking roles (Baker, 1989). Although there is abundant documentation describing the burden of mental illness on families (Lefley, 1987a(Lefley, , 1987b(Lefley, , 1989Eakes, 1995, Hainesworth et al., 1995, most interventions dismiss the family and primarily provide individual aftercare services centred around the administration and/or monitoring of psychotropic medications and day treatment or psychosocial programmes designed to increase socialization skills. ...
The purpose of the study was to pilot a family centred brief solution-focused therapy model (BSFT) with families and clients diagnosed with schizophrenia. A control group of clients and their families received traditional outpatient therapy, while an experimental group of clients and their families were treated with a BSFT model. All participants were pre-tested and then post-tested with the Family Environment Scale after five therapy sessions over a ten-week period. Significant differences between the groups were found on expressiveness, active-recreational orientation, moral-religious emphasis and family incongruence. The participation of families and clients with schizophrenia in family centred brief solution-focused therapy produced encouraging results and demonstrated the need for expanded studies using BSFT with other chronically mentally ill clients and their families.
... The experience of psychosis within a family holds many similarities to this as the cycle of relapse and wellness generate a continuing cycle of grieving. Eakes, in a small study, found that eight of ten parents of seriously mentally ill children suffered from chronic sorrow [26]. This would suggest a partial integration and acceptance of the loss leading to a capacity to function as well as possible under the circumstances and may mirror the level of functioning stability found in low-EE family members. ...
Objective: As part of a strategy to consider the options for preventing the developmental entrenchment of expressed emotion (EE), we examine the early ontogeny of EE in a first-episode sample of individuals with psychosis and its links with the process of adaptation to change.Methods: The key relatives of 50 first-episode psychosis patients from two locations were interviewed soon after patient referral and again 9 months later using measures of expressed emotion and loss.Results: The developmental pathways of components of expressed emotion, particularly criticism and emotional over-involvement, were independent despite having a similar effect on outcome for patients. Initially, high levels of emotional over-involvement were reduced by follow up, with 37% resolving into high criticism. Overall expressed emotion status changed in 28.2% of key relatives (all parental), predominantly from high to low. High emotional over-involvement and low criticism are associated with significantly high levels of perceived loss in relatives. The metamorphosis of emotional over-involvement to criticism was linked to a reduction in perceived loss.Conclusions: Expressed emotion is not a stable index in relatives of first-episode psychosis samples. Appraisals of loss by relatives may be driving high emotional over-involvement with implications for family intervention programs. Attachment theory may help to explain some of the processes underlying resistance to change in some of the high-EE behaviours measured by expressed emotion.
This study examines the grief experiences of parents raising children with serious mental illness and violent tendencies (SMI/VT). We conducted in-depth interviews with 32 self-identified parents of young and adult children with SMI/VT. We employed a modified version of grounded theory for the data analysis, which revealed that the grief of parents of children with SMI/VT parallels that of parents whose children have died. To cope with their grief, participants reconstructed their child’s identity in one of two ways: (1) my child is absent (i.e., my child does not exist, this person with SMI/VT is not my child), or (2) my child is present (i.e., my child is here but the SMI/VT is not a part of my child). We frame our findings through the concept of ambiguous loss. Our manuscript concludes with recommendations for practitioners.
There are many children with intellectual disability (ID) in recent years. The increase in numbers reflects the knowledge regarding the issue, thus creating awareness and increased detection for children for any developmental delay. Consequently, medical services are seeing and treating younger cohorts. Their disability may be mild to moderate, making it difficult even for medical professionals to identify these children. Invariably all parents want to have healthy, intelligent, and capable children who can achieve independence and a successful life. The reality is that parents having children with ID often struggle to understand what is happening with their child, what more how to cope with and help their child. Added to their distress is that even professionals dealing with the children and their family have various ideas and beliefs regarding this issue. Identifying families who are struggling and offering them the appropriate advice is essential as these families need proper guidance and services for their child.
Wenn der Bruder oder die Schwester psychisch erkrankt, ist das meistens sehr belastend. Allerdings finden die Geschwister weder in der Forschung noch im Hilfesystem ausreichend Beachtung. Welche Bedürfnisse haben die Geschwister? Welche Unterstützung erfahren sie? Was erleben sie als hilfreich? Eine quantitative Befragung liefert erste Antworten.
Purpose
The purpose of this study was to explore how adaptive patterns of religiousness/spirituality and hope predict adult life satisfaction in adults, even if they had childhood loss experiences.
Design and Methods
Using a cross-sectional survey design with132 adult participants (mean age 33.8 ± 15.2, 82% female, 78% Caucasian) we estimated two hierarchical regression models to examine how dimensions of religiousness/spirituality (Brief Multidimensional Measure of Religiousness/Spirituality) and hope (Herth Hope Index) predicted adult life satisfaction (Satisfaction with Life Scale) after controlling for effects of adverse childhood experiences (Adverse Childhood Experiences Study Questionnaire) or chronic sorrow from childhood loss (Kendall Chronic Sorrow Instrument).
Results
When effects of adverse childhood experiences (ACE) were controlled, higher levels of hope (β = .416, p < .001) and forgiveness (β = .273, p = .023) and lower levels of religious/spiritual values/beliefs (β = −.298, p = .014) predicted higher levels of adult life satisfaction. ACE remained a significant predictor of adult life satisfaction in the final model. When controlling for effects of chronic sorrow, higher life satisfaction was predicted only by forgiveness (β = .379, p = .003), values/beliefs (β = −.354, p = .007), and hope (β = .357, p < .001), with chronic sorrow not a significant predictor of adult life satisfaction in the final model.
Conclusion
Greater life satisfaction for adult survivors of childhood loss experiences could be promoted by interventions to enhance hope and foster forgiveness. These adult survivors may also need support as they engage with religious/spiritual struggle to reconcile their values and beliefs with childhood loss.
Introduction
Mental and substance use disorders are leading causes of disability worldwide. Yet only 10% of individuals globally receive treatment for such disorders, with an even higher treatment gap in low- and middle-income countries (LMIC). Serious mental illnesses (SMI), defined as a mental, behavioral, or emotional disorders resulting in serious functional impairment, primarily including bipolar disorder and schizophrenia spectrum disorder, remain misunderstood in countries with limited infrastructure (financial and human capital). This study explores the lived experiences, social ecologies, and political framework for the treatment of individuals living with serious mental illness in Uganda.
Methods
This scoping review identified relevant publications using (1) a Boolean search, (2) manual screening of eligible publications, (3) identification of additional peer-reviewed articles and grey literature by hand searching the final list of included records, (4) thematic analysis and grounded theory to categorize studies into representative aspects of compiled literature, based on emerging themes of people with serious mental illnesses (PWSMI) ecologies, and (5) rigorous data extraction and analysis, guided by a comprehensive exclusion strategy for eligibility.
Results
The 41 eligible articles included aspects of prevalence, comorbidities, caregiver involvement, and treatment pathways (traditional healers, community healthcare workers, primary care clinics, and national referral hospitals) for PWSMI in Uganda. Due to a lack of community mental health literacy, there are barriers to accessing high-quality, holistic mental healthcare for afflicted individuals.
Discussion
People seek care wherever they can find it, and if they believe their symptoms align with the treatment modalities. For example, beliefs in spirit possession may lead a PWSMI to visit the neighborhood traditional healer before the more distant national referral hospital. Research further illustrated a direct link between the aforementioned ecologies and a decreased quality of life in caregivers due to the economic loss, erratic behaviors of the afflicted, and the strain of caring for PWSMI when interfacing with allopathic medicine. Stock-outs in health facilities and limited human resources cause overburdened health systems and the utilization of less efficacious psychotropic medications inconsistently. Additionally, misdiagnoses are common due to the lack of service oversight, and PWSMI often endure severe untreated side-effects from both traditional and allopathic medicine providers.
Implications for Policy and Practice
While this study outlines the current pathways to care, there is room for improvement, including lessons for improving mental health policy and the implementation of appropriate community-based mental health practices.
Conclusion
PWSMI are often left with low-quality choices to access care. This study suggests that, by critically analyzing community needs and complimentary programs, the livelihoods of people with serious mental illness and their caregivers can be vastly improved. Although PWSMI struggle with mental, physical, and social concerns, they are largely undervalued in the Ugandan context and isolated from society. Their pathways to recovery are wrought with frustrating encounters with peers and painful side-effects of treatment.
Parenting children with intellectual disabilities is challenging. Many of these children are misunderstood, while parents are often blamed for the difficulties. The reality is that parents of such children are themselves unable to understand the nature of their child's difficulties, what more to cope with the child. The child's difficulties poses challenge for the parents and siblings, and many parents struggle. The chapter will discuss types of problems faced by the children with mental disability, their parents and siblings, including the possible impact on mental health of the family. The chapter will as well discuss the impact of mental health difficulties in parents and its impact on their parenting. The chapter hopes to highlight the need to recognize parents who are struggling, what should professionals looked for in their assessment of families with children with intellectual disabilities. Identifying families who are struggling is important as the family environment has an impact on functioning and, consequently, service needs of the child.
The advent of community care has led to the increasing involvement of family members as informal sources of support for people with severe mental illness. This qualitative study explores informal helping in families living with psychosis. Nine people who experienced repeated episodes of psychosis and a member of their family were interviewed. The interview enquired about the types of help and support provided, what was helpful or unhelpful from each person's perspective and the participants' respective experiences in the process of offering and receiving support. The resultant transcripts were analysed according to the principles of interpretative phenomenological analysis. Several themes captured the key elements of the participants' experiences; these were organised into two higher order domains. The first domain, 'Normal life', encompassed what was offered by family members and what the people who experienced psychosis found helpful. Particularly important were constancy of family interactions and a sense of asylum. 'Issues in help and support' was the second domain. This covered some of the difficulties, tensions and dilemmas which affected the families' support efforts. Despite the disruption caused by psychosis, families were not just passive in the face of psychosis and most also identified positive aspects to living with psychosis. Together, people who experienced psychosis and their family members described an active approach to managing and accommodating the difficulties imposed by the illness. The implications of these findings for researchers, mental health professionals and services are discussed.
There are many children with intellectual disability (ID) in recent years. The increase in numbers reflects the knowledge regarding the issue, thus creating awareness and increased detection for children for any developmental delay. Consequently, medical services are seeing and treating younger cohorts. Their disability may be mild to moderate, making it difficult even for medical professionals to identify these children. Invariably all parents want to have healthy, intelligent, and capable children who can achieve independence and a successful life. The reality is that parents having children with ID often struggle to understand what is happening with their child, what more how to cope with and help their child. Added to their distress is that even professionals dealing with the children and their family have various ideas and beliefs regarding this issue. Identifying families who are struggling and offering them the appropriate advice is essential as these families need proper guidance and services for their child.
This paper analyses the relationship between Bioethics and Mental Health practice from the perspective of theoretical bioethics and identifies a number of inherent tensions between the two. The first part of the paper outlines the history of bioethics and identifies and explains a number of core features of ‘mainstream bioethics’: (1) methodological individualism, (2) a focus on respect for autonomy/self-determination, (3) an untheorized account of illness and disease. The second part explores how these core features of mainstream bioethics create problems when this framework is ‘applied’ to mental health and mental health practice. In the analysis the focus is on (1) the inevitable embedding of the patient in a social context and the problems in handling this adequately from a standpoint of methodological individualism, (2) the problems created by an untheorized account of mental illness which obscures or even denies the ambiguity of the lived experiences of patients and professionals, and (3) the potentially pernicious effects of seeing autonomy as a threshold concept where the only pertinent issue is whether or not a particular decision made by the patient should be respected, and the only issue relevant to deciding that question is whether or not the person has reached the necessary threshold level of autonomy. The final part of the paper considers ways in which bioethics could engage with mental health practice in a more constructive encounter, and how this could also lead to a more critically constructive encounter between bioethics and mental health law.
Objective
As part of a strategy to consider the options for preventing the developmental entrenchment of expressed emotion (EE), we examine the early ontogeny of EE in a first-episode sample of individuals with psychosis and its links with the process of adaptation to change.
Methods
The key relatives of 50 first-episode psychosis patients from two locations were interviewed soon after patient referral and again 9 months later using measures of expressed emotion and loss.
Results
The developmental pathways of components of expressed emotion, particularly criticism and emotional over-involvement, were independent despite having a similar effect on outcome for patients. Initially, high levels of emotional over-involvement were reduced by follow up, with 37% resolving into high criticism. Overall expressed emotion status changed in 28.2% of key relatives (all parental), predominantly from high to low. High emotional over-involvement and low criticism are associated with significantly high levels of perceived loss in relatives. The metamorphosis of emotional over-involvement to criticism was linked to a reduction in perceived loss.
Conclusions
Expressed emotion is not a stable index in relatives of first-episode psychosis samples. Appraisals of loss by relatives may be driving high emotional over-involvement with implications for family intervention programs. Attachment theory may help to explain some of the processes underlying resistance to change in some of the high-EE behaviours measured by expressed emotion.
Parenting children with intellectual disabilities is challenging. Many of these children are misunderstood, while parents are often blamed for the difficulties. The reality is that parents of such children are themselves unable to understand the nature of their child's difficulties, what more to cope with the child. The child's difficulties pose challenge for the parents and siblings, and many parents struggle. The chapter will discuss types of problems faced by the children with mental disability, their parents and siblings, including the possible impact on mental health of the family. The chapter will as well discuss the impact of mental health difficulties in parents and its impact on their parenting. The chapter hopes to highlight the need to recognize parents who are struggling, what should professionals looked for in their assessment of families with children with intellectual disabilities. Identifying families who are struggling is important as the family environment has an impact on functioning and, consequently, service needs of the child.
This study investigated the occurrence of chronic sorrow among individuals who experienced the death of a loved one. In-depth interviews were conducted with fourteen parents who had experienced the death of a child, ten people who had suffered the death of their spouses, and ten individuals who had had a family member die. Interviews were transcribed and data were sorted into categories, with recurring themes identified. Thirty-three (97 percent) of those interviewed evidenced chronic sorrow. Confronting disparity with social norms and situations that brought memories to mind most frequently triggered recurrence of grief-related feelings. Subjects used action-oriented, cognitive, and interpersonal coping strategies to deal with these episodes of grief. These findings bring into question the expectation inherent in traditional grief theories that emotional closure is a necessary outcome of the grieving process.
This article attempted to classify parental adaptations to their children with disabilities (CWD) according to Merton strain theory and also identified the best timing for their inclusion in physical therapy. Parental responses were classified according to Mertonian adaptation and emotional reactions.Of the different anomie adaptation, retreatism was the most common. Adaptation through ritualism and conformity was also found, however, the best timing for parental inclusion in the care process was best during rebellion and innovation.Parents, who were hitherto ignored during caring of their CWD, should be included in the family-centred care within the biopsychosocial model. Effective therapy could be provided by timing parental adaptation prior to their inclusion in the care process.
Family caregivers with adequate resources manage stress from caregiving more effectively, minimizing their risk for poor health. What resources caregivers have and how they use them may vary, however, by care recipients’ level of functional dependence and relationship to the caregiver. Using a cross-sectional mailed survey, we assessed the coping behaviors and social, family, financial, and internal resources used by caregivers of US veterans who sustained war-related polytrauma and traumatic brain injuries. We compared the resources of those caring for veterans needing high and moderate levels of care and parent and spousal caregivers. Spouses had fewer social and family resources and less self-esteem than parents. Parents had higher incomes, but less access to health insurance than spouses. Those caring for veterans with high needs compared to moderate needs were lonelier, but otherwise, resources did not differ. Caregivers, especially spouses, lacked many resources that could help them manage stress from caregiving.
In this study, the author investigates the burden of 30 Chinese American caregivers of patients with schizophrenia using both quantitative and qualitative data. The relatives experienced enormous burden because of being intensely involved in patient care. Burdens were strongly positively related to family conflicts. In the literature, conflicts among caregivers have rarely been examined, but these conflicts seem particularly important to Chinese families because of the intense involvement of more than 1 member in caregiving. The significant relationship between length of stay in the United States and burden is perhaps related to caregivers' sense of mastery in language and knowledge of community resources in coping with stress.
During the experience of chronic sorrow, people feel emotional discomfort, and hopelessness. It may progress to pathological grief, depression or trigger some of the psychiatric disorders in individuals who are vulnerable. The study explored the experience of chronic sorrow among caregivers of patients diagnosed with schizophrenia. A descriptive qualitative design using Focus Groups and Indepth interviews was used. Most caregivers experienced chronic sorrow and identified trigger factors and coping strategies. The findings may enlighten psychiatric nurses in the care of mentally ill patients, caregivers and family members. The results may also help policy makers to prioritize mental health in the country.
Formål: Formålet med undersøkelsen var å beskrive
ulike typer erfaringer foreldre kan ha når deres sønn
eller datter har fått diagnosen schizofreni, hvilken
innvirkning lidelsen kan ha på foreldres eget liv, og
hvilke generelle erfaringer foreldre til personer med
diagnosen schizofreni kan ha med psykisk helsevern.
Metode: Undersøkelsen benyttet derfor et kvalitativt,
fenomenologisk forskningsdesign. Datamaterialet
består av 20 inngående intervjuer. Informantene var
tretten kvinner og syv menn, som alle var foreldre
til voksne barn med diagnosen schizofreni. De ble
rekruttert via fem psykiatriske institusjoner i Norge.
Data ble innsamlet ved hjelp av et informantsentrert,
semistrukturert, personlig intervju. Intervjuene ble
tatt opp på lydbånd, transkribert ordrett, og analysert
fenomenologisk ved hjelp av dataprogrammet
QSR-NUD*IST.
Resultater: Undersøkelsen viste at foreldrenes erfaringer
med psykisk helsevern i overveiende grad var
negative. Fremtredende funn var kamp for å få hjelp
til sønnen eller datteren, mangelfull informasjon, samt
opplevelsen av å bli oversett, ikke tatt på alvor og ikke
forstått av helsepersonell. Innvirkningen på foreldrenes
liv var omfattende. Kronisk bekymring, skyldfølelse,
utslitthet, sorg og tapsfølelse, samt redusert sosialt
nettverk var sentrale funn. Mange opplevde også en
positiv innvirkning på eget liv.
Konklusjon: Belastningene mange foreldre
opplever som en følge av sønnen eller datterens
lidelse, kan svekke livskvalitet, psykisk og fysisk helse.
Foreldrearbeid bør være en viktig del av det
forebyggende helsearbeid. Psykisk helsevern bør også
forholde seg til foreldre som selvstendige personer
med egne behov uavhengig av pasientens.
Ulike tiltak foreslås som viktige for å ivareta
foreldre på en tilfredsstillende måte, bl.a. klargjøring
av helsevesenets roller overfor foreldre, forståelse
av taushetsplikten, å bli tatt på alvor, informasjon,
emosjonell og sosial støtte, egenomsorg og en fast
kontaktperson i behandlingsapparatet.
The purpose of this study was to investigate the needs assessment and satisfaction level of family support services for preschoolers with disabilities. The subjects were 146 mothers and 138 teachers of 3- to 6-year- old preschool children with disabilities in integrated kindergartens in Daegu, Seoul, and Kyungnam. The major findings of this study were as follows. First, mothers needed information and financial support most. The level of the mother's needs was related to the type and degree of disabilities, child's sex, child's age, mother's educational level, and father's occupation. Second, the satisfaction level of mothers in the integrated kindergarten education programs was generally low. Third, mothers needed parental training of child's problem behavior, mother-child interactions program, and parental education of developing child's creativity.
Emotional responses of parents of children with physical disabilities are not clearly addressed in the disability definition and therefore rarely addressed in the course of assessment and management of the disabled patient by the physiotherapists. In the provision of family-centred care for disabled persons, the impact of disablement on every member of the family including carers should be reviewed. This would assist in furthering the bio-psychosocial model of care. This paper briefly outlines the most common emotional responses and collateral disablement experienced by parents of children with disabilities (CWD) and the implications of this to physiotherapy in the family-centred care.
Approximately one fourth of the population is affected by chrome illness or disability (Schuster and Ashburn, 1992). It has been reported that caregivers of individuals with chronic illness or disability have feelings that were associated with their caregiving role. Olshansky (1962) described and termed these feelings "chronic sorrow." This study looked at the intensity of chronic sorrow in caregivers of adults with mental illness, geriatric and pediatric individuals with chronic illnesses. We also examined the possible relationship between the caregiver's roles and the intensity of chronic sorrow they experienced. The feelings of caregivers were analyzed at different stages during the caretaking period. Using quantitative measures this study determined that chronic sorrow can linger well past diagnosis and that there are trigger events that can increase chronic sorrow. Armed with this knowledge occupational therapists can make interventions that will more fully address the client and caregivers needs.
Chronic sorrow is the presence of pervasive grief-related feelings that have been found to occur periodically throughout the lives of individuals with chronic health conditions, their family caregivers, and the bereaved. These feelings emerge in response to an ongoing disparity that results from the loss of the anticipated “normal” lifestyle of these persons. Circumstances and situations shown to trigger chronic sorrow in a variety of these populations are defined. Similarities and differences of the trigger events among groups and the implications for family nursing practice are discussed. Support that has been identified as helpful when life circumstances evoke chronic sorrow is described.
A greater understanding of the factors that predict family health in the families of young adults with severe and persistent mental illness is essential given the complex and challenging nature of the caregiving role into which these families have been drawn. Based upon the perspective of 126 family caregivers from National Alliance for the Mentally Ill chapters across the United States, this study sought to identify the best predictors of family health from among several client, family, and professional factors. The results indicated that family coping, family stressors, and professional communication were most predictive of the outcome variable of family health.
BACKGROUND: Chronic sorrow was described by Olshansky (1962) to explain a perva sive, psychologic reaction that he observed in parents of mentally retarded children. He believed that the sorrow was a normal, not a neurotic, response to their situation and relatedly, thought clinicians would intervene differently with these parents if they held a similar belief. The Nursing Consortium for Research on Chronic Sorrow (NCRCS), of which the authors are members, has conducted multiple studies to ex pand the understanding of chronic sorrow as a normal state associated with chronic or life-threatening conditions, occurring both in the individual with the condition and in family members. These NCRCS investigators have provided evidence supporting the premise that chronic sorrow is likely to occur in various chronic situations. OBJECTIVES: This study explored whether women with chronically mentally disabled husbands experienced feelings of chronic sorrow in their lives.
DESIGN: Using content analysis, the transcriptsfrom interviews with 11 women were coded using the Burke/NCRCS Chronic Sorrow Questionnaire (Caregiver version) as a guide. RESULTS: All 11 women experienced feelings of chronic sorrow. Feelings of chronic sor row occurred periodically over an extended time when some event reminded partici pants of their long-term situation. Subjects identified personal strategies for coping with feelings of chronic sorrow and nursing activities that had been helpful to them. CONCLUSIONS: The findings of this study are consistent with those of other studies on chronic sorrow. Subjects identified the role of the nurse as teacher/expert as most important for helping women with chronic sorrow, specifically by providing them with knowledge that is current and specific. From these findings, interventions can be developed to increase the psychologic comfort of these caregivers. (J AM PSYCHIATR NURSES Assoc [1995]. 1, 120-124)
Anliegen: Ziel dieser Arbeit ist es, einen umfassenden Überblick über die emotionalen Belastungen von Angehörigen psychisch Kranker zu geben. Methode: Die Literaturauswahl erfolgte mittels einer Medline-Datenbankrecherche der Jahrgänge 1993 - 2004 mit Sichtung und Auswertung weiterführender Literaturhinweise. Die ergänzenden Beispiele wurden aus 32 Angehörigeninterviews entnommen, die unter dem Aspekt der emotionalen Belastungen inhaltsanalytisch ausgewertet wurden. Ergebnisse: Die emotionalen Belastungen der Angehörigen sind äußerst vielfältig und lassen sich inhaltlich verschiedenen Bereichen zuordnen: Ängste und Sorgen infolge mangelnder Informationen, Unsicherheit und Überforderung mit den Symptomen der Erkrankung, Sorgen bez. der Behandlung des Patienten, Hilflosigkeit und Ohnmacht, Einsamkeit und Alleinverantwortung, Nicht-Ernstgenommen-Werden, Zukunftsängste, Gefühle der Einschränkung in der eigenen Autonomie und Abgrenzungsprobleme, Hoffnung und Enttäuschung, Trauer und Verlusterleben, Angst vor Rückfall und Suizid, Schamgefühle und Angst vor Stigmatisierung, Entmutigung, Schuldgefühle, Ärger und Enttäuschung, veränderte Rollen und Rollenkonflikte, Probleme in der gemeinsamen Sexualität sowie Angst vor eigener Erkrankung bzw. Vererbung an die eigenen Kinder. Schlussfolgerung: Durch die differenzierte Kenntnis und Berücksichtigung der emotionalen Belastungen der Angehörigen kann ihre Überforderung vermieden, können hohe Expressed-Emotion-Levels in Familien gesenkt und damit die Rückfallraten reduziert werden.
Anliegen: Ziel dieser Arbeit ist es, einen differenzierten Überblick über den Forschungsstand zur Situation von Geschwistern psychisch Kranker zu geben. Methode: Die Literaturauswahl erfolgte mittels einer Medline-Datenbankrecherche der Jahrgänge 1996 - 2004 mit den Suchbegriffen „sibling” und „mentally ill”/„chronically ill”/„psychiatric disorder” (631 Literaturhinweise) sowie durch Sichtung und Auswertung weiterführender Literaturhinweise. 170 Artikel und Buchbeiträge wurden in die Literaturübersicht einbezogen. Ergebnisse: Die Situation von Geschwistern psychisch Kranker zeigt vielfältige Aspekte, welche sich thematisch folgenden Bereichen zuordnen lassen: Belastungen in der Beziehung zu dem erkrankten Geschwister, Belastungen in der Beziehung zu den gemeinsamen Eltern und anderen Familienangehörigen und Belastungen für die eigene Lebenssituation des gesunden Geschwisters. Diesen Belastungen stehen teilweise Bereicherungen und positive Entwicklungen im eigenen Leben infolge der Erkrankung des Geschwisters gegenüber. Personenbezogene Variablen wie Geschlecht des gesunden Geschwisters, Familiengröße, Alter bei Erkrankungsbeginn und Geschwisterfolge nehmen Einfluss auf das Erleben von Geschwistern. Schlussfolgerungen: Aus den aufgezeigten Belastungen lassen sich Handlungsbedarfe für politische Entscheidungs- und Kostenträger, professionelle Helfer in und außerhalb von Kliniken und die Familien selbst ableiten.
The purpose of this study was to identify contextual factors that affect the ability of caregivers to provide necessary supports to mentally ill individuals. Context was defined here as the socially patterned arrangements of peoples' everyday lives and the social and cultural meanings attached to them. Three contextual areas of caregiver burden were explored: race, role responsibility, and relationship between caregiver and the mentally ill individual. Using a stress process model as a guide for our analysis we examined the role of contextual factors, primary stressors and social supports as predictors of several dimensions of caregiver burden: objective financial burden, subjective financial burden, and household disruptions. Analyses were based on interviews with 219 caregivers of persons with severe persistent mental illness who were part of randomized clinical trial of outpatient commitment (OPC) combined with community based treatment. The findings provide evidence of the importance of environmental context in structuring different aspects of caregiver burden, in particular the influence of race and relationship with the client. Parents and spouses experienced more financial burden and household disruptions than other relationships and African American caregivers reported more subjective financial burden than whites. African American caregivers also were more tolerant of client behaviors than whites. Instrumental social support and help with the client were predictors of caregiver burden. The latter was interpreted as evidence of a support mobilization effect.
Objectives: To describe a family intervention programme aimed at attracting family members of patients undergoing long-term hospitalisation to take an active interest in the treatment of their relatives, and thus restore hope and optimism to both the patients and their families. Participants and Methods: Families of patients with persistent schizophrenia were invited to participate in an intervention programme that included a family get-together geared to involve them in patient care. Relatives of 40 long-term patients participated in the event. Results: Three families who had previously never visited the hospital participated in the event. Among families that did visit, relatives, mainly siblings, came to the hospital for the first time. Four of the 11 patients who had previously never been taken out for a 'vacation' were taken home for a visit following the event. For the whole group of patients, home visits increased by a mean of 24%. Conclusions: Psychoeducation and additional ongoing activities geared to involve families in the care of their relatives are necessary to maintain contact between patients undergoing long-term hospitalisation and their families.
131 parents of adult and young-adult offspring with severe mental illness completed the Marital Adjustment Test and the SCL-90. Respondents reporting higher levels of marital satisfaction were more likely to be fathers, have a larger number of children in addition to the ill child, and report higher levels of mutual comfort about the illness between themselves and their spouses and lower feelings of interpersonal inadequacy. Income had a weak, nonsignificant, positive relationship to marital satisfaction. Several family psychoeducational approaches are suggested arising from the significant relationship between mutual comfort and marital satisfaction.
Examined, among 125 adult women and 51 adult men, the psychological costs of providing care for a parent with Alzheimer's disease, focusing on the consequences of depression, guilt, anxiety, and resentment in relation to the caregiver's coping style, social support, and sense of control. Compared with men, women were more anxious, reported more stress, and were more likely to evidence accommodations showing intrapsychic strain and affective response. Women with less internal control were more depressed and anxious and experienced more guilt, compared with males. Women more frequently used fantasy as a coping style, while men used psychological distance (objectifying) to alleviate stress. No coping style effectively eliminated the negative psychological consequences of caregiving.
Discusses the stresses and burdens on families of mentally ill (MI) individuals, including stigmatization, and problems in dealing with mental health (MH) professionals. Converging historical events, new biogenetic research findings; widening recognition of the dimensions of family burden; deinstitutionalization, have led to a reconceptualization of the family role. The growth and influence of the National Alliance for the Mentally Ill have also been part of the historical process and have contributed to the new respect for families of MI individuals. The new and collaborative model of clinician–family relationships has done much to destigmatize families, to reorient the thinking of many MH professionals, and to alleviate the burden of families of MI individuals.
In response to a questionnaire mailing, parents of mentally retarded children and social workers essentially agreed that such parents experience periodic crises during the child's development, rather than time-bound adjustment. Social workers tended to underestimate the impact on parents of later developmental periods. Clinical implications of the findings, which run counter to the prevalent professional view, are considered.
Experts debate whether the bereavement experienced by parents of handicapped children is relatively brief or chronic/periodic. In this study, well-adjusted parents identified periods of recurring grief and indicated the need for ongoing professional services.
Multiple sclerosis, one of the most common chronic disabilities among young adults, may potentiate the occurrence of chronic sorrow. Chronic sorrow differs from acute grief because it is permanent, periodic, and progressive in nature; it may be a normal component of chronic illness and disability. This study describes one woman's experience with multiple sclerosis, her chronic sorrow about the trajectory of her disability, her progressive loss of bodily function, and the stigma of chronic illness. It also reports some of the feelings experienced by her husband, the primary caregiver.
The relationship between premature children experiencing a stressor event and parents experiencing chronic sorrow was studied Data indicated that the subjects experienced feelings of loss/grief and fear when their premature child experienced the stressor events of illness, surgery, medical and behavioral problems, chronic illness, and day care, as well as when another child surpassed their child developmentally The subjects offered in-depth feedback directed to professionals to assist them in coping These data may help professionals to become aware of the emotional responses of parents of premature children and to assist them in copmg with their needs/concerns, preventing major adjustment and psychosocial problems for both the child and parents.
Evidence is presented from several studies of bereaved adults which supports Bowlby's claim that “the urge to recover the lost object” is a principal component of grief. This is revealed in abortive “searching” behaviour.At other times bereaved people tend to feel and act as if the dead person were still present even though they know that this is not so. Thus “seeking” and “finding” are juxtaposed.The implications of these findings for traditional theories of ego defence are discussed and the place of “searching” is considered in wider context as a consequence of the frustration of goal-corrected behaviour.RésuméDans cet article on a considéré l'évidence qui appuie l'hypothèse que l'impulsion de chercher la personne qu'on a perdue est une partie importante de la réaction psychologique au deuil parmi les adultes humains. Six catégories de données appuient l'hypothèse: (1) Agitation motrice (motor restlessness). (2) Préoccupation avec des souvenirs visuels clairs de la personne perdue. (3) Dévelopment d'un champ de perception (perceptual “set”) pour la personne perdue. (4) Attention dirigée vers les parties de l'environnement où l'on peut probablement trouver la personne. (5) Appel à la personne et (6) Conscience de se sentir poussé à la recherche de la personne.Il semble que la recherche indique un refus partiel d'accepter la permanence de la perte, surtout pendant la première période du deuil, un refus partiel de reconnaître la perte comme un fait. C'est pourquoi l'affligé sent et agit comme si l'être disparu vivait toujours, même s'il sait que cela n'est pas vrai. Pendant la dernière maladie les proches parents sont enclins à ne pas croire ce qu'on leur dit au sujet du pronostic et du diagnostic, et même un an après avoir perdu leur mari, plus que la moitié d'un groupe de veuves disaient encore qu'elles avaient de la peine à croire ce qui leur était arrivé. Ce sentiment était au plus fort pendant la période immédiatement après leur perte, quand un état d'engourdissement et d'incompréhension était la réaction la plus naturelle. Par la suite, deux tiers des veuves ont noté une sensation réconfortante de la présence du mort, et des hallucinations hypnagogues de la personne perdue n'étaient pas rares. Aussi semble-t-il que ‘chercher’ et ‘trouver’ sont juxtaposés: tous deux jouent un rôle dans le procédé graduel de réalisation qu'on appelle “deuil”.On suggère une forme révisée de la classification qu'a faite Bowlby des étapes du deuil. 1.1ère étape: période d'engourdissement, où l'affligé se refuse en partie à se rendre compte de sa perte.2.2ème ètape: période où l'on aspire à retrouver la personne perdue, où l'affligé n'accepte pas tout à fait la permanence de sa perte, et où il est poussé à rechercher la personne perdue.3.3e etape: période de désespoir, où l'affligé accepte plus ou moins le fait et la permanence de sa perte.4.4e étape: période de reprise des relations avec autrui (resumption of object relations) c.à.d. période, où la réorganisation et la réhabilitation s'accomplissent.Dans la section finale on essaie d'établir un rapport entre la recherche de la personne perdue et des idées récentes au sujet de la frustration de conduite importante, orientée vers un but (goal-directed conduct). On considère comme établi que dans tous les cas de perte d'un être cher, l'individu a un “champ” sensitivo-moteur, qui le prédispose à chercher et à trouver quelque chose, si ténue soit-elle, vers laquelle la conduite consommatrice peut être orientée.ResumenEn este artículo se da evidencia de la hipótesis de la urgencia de buscar a la persona perdida, es una parte importante de la reacción psicológica de la aflicción de los adultos, ha sido considerada. Seis categorias de datos, soportan esta hipótesis: (1) Movimiento de desasosiego. (2) Preoccupación, con visión clara de la persona perdida. (3) Desarrollo de la “idea fija” de la persona perdida. (4) Dirección y atención hacia las partes o el ambiente en el cual se piensa sea posiblemente encontrada la persona. (5) Llamamiento a la persona. (6) Conociento consciente de impulso del la busqueda.La busqueda es pensada a indicar parcial indeferencia de la permanencia de la pérdida. Se ve también indiferencia parcial del mismo hecho de la pérdida, particularmente durante las primeras fases de la aflicción. Esto es causa de que la persona despojada sienta y actue como si la persona muerta estuviera aún presente, aunque sabe que no es este el caso. Durante la última enfermedad, los parientes cercanos, generalmente no suelen creer lo que se ha dicho sobre el pronóstico y el diagnóstico, y aún después de un año de aflicción, más de la mitad de un grupo de viudas, todavia dijeron que habían encontrado muy difícil el creer lo que ha sucedido. Este sentido fue más fuerte immediatemente después del momento de la primera aflicción cuando la insensibilidad y la incomprensión fue la reacción más normal. Después de eso, un sentido consolador de la presencia de la persona perdida fue reportado, en varias ocasiones, por dos terceras partes de las viudas y alucinaciones hipnagógicas no fueron poco comunes.Asi parece que el buscar y el hallar son yuxtapuestos y que ambos toman parte en el proceso gradual de realización (hacer real) lo que llamamos aflicción.Una forma revisada de la clasificación de Bowlby de las fases de aflicción es expuesta: 1.Primera fase: La “Fase de Insensibilidad” en la cual hay indiferencia parcial del hecho de la perdida.2.Segunda fase: La “Fase de Añoranza” en la cual hay una indiferencia parcial por la permanencia de la perdida y la busqueda toma lugar.3.Tercera fase: La “Fase de Desesperación” en la cual hay relativa aceptación de ambos, el hecho y la permanencia de la perdida.4.Cuarta fase: “Fase de la reanudación de los objetos y reacción” en la cual la reorganización y el recuperamiento toman lugar.
En la parte final una tentativa se ha hecho para relacionar la busqueda de una persona perdida con las recientes ideas concernientes a la fustración de importante conducta de corrección. Es postulado que en todos estos casos, el indivuduo tiene un motivo sensitorio que le predispone a buscar y encontrar algo, aunque tenue, hacia lo cual su conducta se ha de dirigir.ZusammenfassungIn diesem Artikel wird Beweismaterial für die Hypothese untersucht: dass das Verlangen, die verstorbene Person zu suchen, bei Erwachsenen ein wichtiger Teil der psychologischen Reaktion auf den Verlust durch den Tod ist. Sechs Kategorien von Unterlagen stützen die Hypothese: (1) Ruhelosigkeit. (2) Beschäftigung mit klaren visuellen Erinnerungen an den Verlorenen. (3) Entwicklung eines Wahrnehmungsrahmen (perceptual “set”) für die verlorene Person. (4) Lenkung der Aufmerksamkeit auf Teile der Umgebung, wo die Person wahrscheinlich zu finden ist. (5) Rufen nach der Person. (6) Bewusstsein des Verlangens zu suchen.Man glaubt, dass das Suchen eine partielle Missachtung der Fortdauer des Verlusts bezeichnet. Eine partielle Missachtung der eigentlichen Tatsache des Verlusts wird auch, besonders während des ersten Stadiums der Trauer, bemerkt. Dies lässt den Trauernden fühlen und handeln, als ob der Tote immer noch am Leben sei, auch wenn er weiss, dass dies nicht der Fall ist. Während der Todeskrankheit sind die nahen Verwandten geneigt, das zu bezweifeln, was ihnen über die Prognose und die Diagnose gesagt wird, und selbst ein Jahr nach ihren Verlust sagte sogar die Hälfte einer Gruppe von Witwen, dass es ihnen schwer fiele zu glauben, was geschehen war. Dieses Gefühl war am stärksten während der unmittelbar auf den Verlust folgenden Zeit, als Betäubung und Verständnislosigkeit die häufigste Reaktion waren. Danach wurde gelegentlich ein tröstliches Gefühl der Anwesenheit der verlorenen Person von drei Dritteln der Witwen mitgeteilt, und hypnagogische Wahnvorstellungen von der verlorenen Person kamen ziemlich oft vor.Also scheint es, dass “Suchen” und “Finden” nebeneinanderleigen und dass beide im allmählichen Verwirklichungsvorgang, den wir “Trauer” nennen, eine Rolle spielen. Eine revidierte Form von Bowlbys Klassifizierung der Stadien der Trauer wird vorgeschlagen: Erstes Stadium—Stadium der Betäubung, in dem es sich um eine partielle Missachtung des tatsächlichen Verlusts handelt. Zweites Stadium—Stadium der Sehnsucht, wo es sich um eine partielle Missachtung der Fortdauer des Verlusts handelt, und wo der Verlorene gesucht wird. Drittes Stadium—Stadium der Verzweiflung, wo sowohl die Tatsache als auch die Fortdauer des Verlusts gewissermassen akzeptiert werden. Viertes Stadium—Stadium der Wiederanknüpfung der Verbindungen zur Umwelt, (resumption of object relations) wo Wiederherstellung und Genesung stattfinden.Im Schlussteil wird versucht, das Suchen nach der verlorenen Person mit neuen Ideen zu verknüpfen, die die Enttäuschung aus wichtigem, zielgerichtetem Verhalten betreffen. Es wird vorausgesetzt, dass in allen diesen Fällen der Mensch eine senso-motorische Anlage (“set”) hat, die ihn prädisponiert, etwas zu suchen und zu finden,—wie dürftig es auch sein mag—auf welches er sein vollziehendes (consummatory) Verhalten richten kann.
Losses are an integral part of chronic illness and disability. The term chronic sorrow, has been used to describe the long-term periodic sadness the chronically ill and their caregivers experience in reaction to continual losses. In this conceptual analysis of chronic sorrow, identified critical attributes are: cyclic sadness over time in a situation with no predictable end; external and internal stimuli triggering the feelings of loss, disappointment, and fear; and, progression and intensification of the sadness or sorrow years after the initial disappointment or loss. Model, borderline, related, contrary, and illegitimate cases illustrate what the concept is and what it is not. The meaning of chronic sorrow is compared to the meaning of unresolvable grief and depression. Chronic sorrow in various stages of life is illustrated in descriptions of: the situation and feelings of parents of handicapped children; multiple sclerosis patients in the middle, productive years; and elderly caregivers of spouses with dementia. Implications for research include the need to study the concept in various populations to determine its prevalence and operation. Through research, the meaning of the concept can be further clarified. This is a beginning step toward developing nursing theory that will give direction for providing care to persons encountering sadness over long periods of time.
Emotionally close relationships can be disrupted at any time in the life cycle. When a relationship of attachment is disrupted following an event that renders a loved one forever changed from the hoped-for child or from the known person, recurrent sadness, or chronic sorrow, is a frequently encountered response. The genesis of sadness is one's recognition of a negative disparity between the person who was known prior to the onset of disability (or the imagined, hoped-for child) and the now-disabled person. Though each episode of sadness resolves somewhat over time, renewed recognition of a negative disparity in the disabled loved one triggers sadness again. Besides being recurrent, the sadness of chronic sorrow is also permanent, variable in intensity between situations and persons, and interwoven with periods of neutrality, satisfaction and happiness. The concept is analysed and contrasted with the prevalent model of linear, time-bound grief.
Chronic sorrow is a concept that describes parental psychologic reaction to a child who has special health needs. The term can be applied to all types of chronic disabilities regardless of their degree of severity. The term was conceptualized in the early 1960s, but the research momentum has just recently begun.
In the literature on siblings of schizophrenic individuals, recurrent experiential themes include guilt feelings, a fear of madness in oneself, and a wish to escape the turbulence that surrounds the schizophrenic person. In psychotherapy conducted by the author with three siblings of schizophrenic individuals, the siblings manifested sadness, guilt, identification with the schizophrenic brother or sister, and manic-defensive externalization as aspects of their survivor predicament. The suitability of the schizophrenic individual as a target of externalization and the significance of defeated parents to the survivor sibling are discussed.
With the increased emphasis on the generation of nursing knowledge through research, collaboration has been identified as an effective way of maximizing both personal and financial resources. There are few articles that specifically describe the process for initiating such a collaborative effort, especially when interested persons are far removed, geographically, from one another. This paper outlines the steps involved in establishing a research consortium and chronicles the development of the Nursing Consortium for Research on Chronic Sorrow. Lancaster's (1985) criteria for effective research collaboration are used to evaluate this developmental process.
Anger, under any circumstances, is difficult to experience and understand. When associated with grief, anger seems startling and somewhat inappropriate. Yet the failure to recognize and the inability to work with angry feelings may compromise and inhibit the necessary grieving process. If not confronted directly, anger emerges in a variety of disguises such as disabling illness, maladaptive behavior, and chronic unhappiness. Using numerous case examples, the authors address the role of anger in the grieving process.
The burden that a family experiences as a result of one of its members having a chronic mental illness has been the subject of research since the mid-1950s. A review of the findings in the research literature, an examination of the conceptual and operational definitions of burden, and an evaluation of methodological issues are provided. Finally, based on this critical review, suggestions are offered for future research.
Investigations of the grief reactions experienced by families when a relative develops a serious mental illness have been hampered by the lack of an appropriate instrument to measure such reactions. The authors devised the Mental Illness Version of the Texas Inventory of Grief, adapted from the Texas Revised Inventory of Grief, to assess family members' initial and present feelings about their relative's loss of mental health. A test of the instrument with 58 family members of patients with schizophrenia or bipolar disorder revealed a surprisingly low level of initial grief but higher levels of present grief.
Mothers and fathers of children with Down syndrome were surveyed on overall patterns of adjustment and on frequency of chronic sorrow and coping behaviors. Fathers overwhelmingly (83%) depicted their adjustment in terms of steady, gradual recovery, while the majority of mothers (68%) reported a peaks-and-valleys, periodic crises pattern; chi 2 = 8.64, p less than .01. Mothers also reported higher frequencies for chronic sorrow as well as for behaviors such as self-blame and expression of negative affect. Thus, mothers and fathers in the same family may experience distinct differences in adjustment and coping as parents of a handicapped child.
This paper reviews the literature on the effect of severe mental illness on other members of the patient's family. The burdens of caring for a patient at home are considerable. They often affect the caring relative's social and leisure activities, and financial problems arise frequently. Relatives have difficulties in understanding and coming to terms with illness-related behaviour. 'Negative' symptoms are often a particular problem. Despite their burden, relatives do not complain much, although they receive little support, advice or information from the professionals engaged in treating the patient; much is now known about the difficulties relatives face, but we still need to know how they can best be helped. Failure to do this will have bad effects on both relatives and patients.
Regardless of whether the onset of mental illness is insidious or acute, a psychotic episode creates a condition of disaster in a patient's family.
More than one-third of long-term mentally ill adults live with their families, most with aging parents, a situation that accentuates the need for residential alternatives to home care for deinstitutionalized patients who will out-live their caregivers. The role of parenting mentally disabled adults may also impose undue stress on elderly persons. Objective and subjective parental burden, including fears for the patient's future, are increased by the mental health system's failure to offer education, support, training in problem solving, and a collaborative role in discharge planning to family members. Social policy implications of considering families as primary caregivers include the danger that government will be relieved of responsibility for care of the mentally ill, the creation of a potentially at-risk population among aging parents and other family members affected by the stresses of caregiving, and the reduction of the patient's potential for independent living.
Recognition that a psychiatrically ill family member has profound effects on family life and significant others has stimulated the need for more precise assessments of family members. The authors evaluated the burden experienced by those in the immediate environment of an individual with recurrent depressive illness as well as the beliefs they hold about the illness. This report presents a preliminary body of data on the level and types of distress shared by family members, especially family members living with the patient. Such information is valuable in designing educational interventions for family members in order to explore their attitudes and belief systems about depressive illness, to decrease the impact of family and other relationship stress on the patient, and to enhance the significant others' support of the patient.
Dementia is an illness profoundly affecting the patient's physical and emotional well-being. The impact of the disease extends far beyond the patient himself, touching each family member involved in the patient's care. Social workers and other mental health professionals can offer valuable assistance to the family as they experience each stage of the patient's illness. Several theoretical constructs aid in understanding the grieving process of the family. Clinical case examples are used to highlight individual and group therapeutic interventions.
This qualitative nursing research study investigated the occurrence of chronic sorrow in individuals with multiple sclerosis. Using the Burke/NCRCS Chronic Sorrow Questionnaire (Individual Version), 10 participants were interviewed. Data were analyzed in collaboration with one other researcher. Of the participants, 80% evidenced the presence of chronic sorrow in their lives. Data clearly indicated that feelings of chronic sorrow occurred periodically over a protracted span of time when some event reminded participants of their chronic situation. The nursing roles of empathetic presence and caring professional helped participants the most in dealing with their feelings of chronic sorrow.
The purpose of this study was to compare grief among parents who had an adult child with schizophrenia and parents who had "lost" an adult child through death or a head injury that resulted in an organic personality disorder.
Twenty-five parents from each group were studied. Self-report scales that assessed grief, depression, anxiety, and substance abuse were administered.
There were significant differences with regard to grieving reactions and substance abuse. The parents with schizophrenic children had more ongoing grieving, and the parents of children with head injuries had more substance abuse.
Parental loss of a child through schizophrenia leads to a pattern of chronic grief.
This qualitative study was designed to examine the presence of chronic sorrow in diverse populations of individuals with chronic or life threatening conditions and to identify strategies for coping with feelings of chronic sorrow. Chronic sorrow was defined as a pervasive sadness that is permanent, periodic, and progressive in nature. The sample comprised 5 infertile couples, 10 individuals with long-term cancer, 10 individuals with multiple sclerosis, 6 individuals with Parkinson's disease, and 4 spouse caregivers. Data were collected through audiotaped face-to-face or telephone interviews using the Burke/NCRCS Chronic Sorrow Questionnaire. The audiotapes were transcribed, entered into a computer analysis program, and collaboratively analyzed by the researchers. The findings indicate that 83% of the subjects experienced chronic sorrow. The four coping strategies that were identified by the subjects as being helpful to their situation were categorized by the researchers as interpersonal, emotional, cognitive, and action.
This study investigated the occurrence of chronic sorrow in individuals diagnosed with cancer and explored factors perceived as helpful to those experiencing grief-related feelings. Using the Burke/NCRCS Chronic Sorrow Questionnaire (Affected Individual Version), interviews were conducted with 10 individuals with cancer at least one year postdiagnosis. Interviews were transcribed and coding categories were developed. Data then were sorted into categories and recurring themes were identified. Nine of the subjects demonstrated evidence of chronic sorrow. Subjects most often used cognitive or action-oriented coping strategies to deal with their grief-related feelings. Nursing roles identified as particularly helpful to subjects experiencing chronic sorrow were providing an empathetic presence and being a teacher/expert. Nurses need to be aware that individuals living with cancer may experience chronic sorrow, and they need to be prepared to intervene in ways deemed helpful.
Multiple sclerosis, one of the most common chronic disabilities among young adults, may potentiate the occurrence of chronic sorrow. Chronic sorrow differs from acute grief because it is permanent, periodic, and progressive in nature; it may be a normal component of chronic illness and disability. This study describes one woman's experience with multiple sclerosis, her chronic sorrow about the trajectory of her disability, her progressive loss of bodily function, and the stigma of chronic illness. It also reports some of the feelings experienced by her husband, the primary caregiver.
The provision of long-term caregiving is a major issue for an aging society. This article addresses some issues of a group of caregivers who are virtually ignored—the elderly who provide care rather than receive it Because of their age, elderly parents who serve as caregivers of their adult disabled children may have needs that are similar but slightly different from those of other caregivers. Research is needed so that social workers can better serve these families.
Chronic sorrow in mothers of school-age children with myelomeningocele disability. Unpub-lished doctoral dissertation
- M L Burke
Burke, M.L. (1989). Chronic sorrow in mothers of school-age children with myelomeningocele disability. Unpub-lished doctoral dissertation, Boston University.
Chronic sorrow: An examination of nursing roles.
- Eakes G.G.
- Burke M.L.
- Hainsworth M.A.
- Lindgren C.L.
Chronic sorrow in mothers of school-age children with myelomeningocele disability
- Burke
Chronic sorrow: An examination of nursing roles
- Eakes