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Middle-Range Theory Of Chronic Sorrow
Abstract
To introduce a middle-range nursing theory of chronic sorrow that presents this sorrow as a normal response to ongoing disparity due to loss. Chronic sorrow is the periodic recurrence of permanent, pervasive sadness or other grief related feelings associated with a significant loss. The theory provides a framework for understanding and working with people following a single or ongoing loss.
The model of chronic sorrow includes antecedents, trigger events, and internal and external management methods.
Theory is useful for analyzing individual responses of people experiencing ongoing disparity due to chronic illness, caregiving responsibilities, loss of the "perfect" child, or bereavement.
The theory was developed using concept analysis, critical review of research, and validation in 10 qualitative studies of various loss situations.
Chronic sorrow has been shown to explain the experience of people across the lifespan who encounter ongoing disparity because of significant loss. Nurses need to view chronic sorrow as a normal response to loss and, when it is triggered, provide support by fostering positive coping strategies and assuming roles that increase comfort.
... Chronic sorrow is defined as "the periodic recurrence of permanent, pervasive sadness or other grief-related feelings associated with a significant loss" (Eakes et al., 1998). Chronic sorrow contains four concepts, loss situations, disparity, triggers events and management techniques. ...
... The impossibility of closing this gap leads to recurrence of grief-related feelings which are triggered by circumstances or situations that highlight this gap in everyday life. People deal chronic sorrow by using different management techniques (Eakes et al., 1998). If chronic sorrow is not recognized and addressed it can severely affect the wellbeing of individuals (Eakes et al., 1998;Olshansky, 1962). ...
... People deal chronic sorrow by using different management techniques (Eakes et al., 1998). If chronic sorrow is not recognized and addressed it can severely affect the wellbeing of individuals (Eakes et al., 1998;Olshansky, 1962). Most people who experience chronic sorrow are not aware that they are grieving (Bowman, 2021;Eakes et al., 1998); therefore, chronic sorrow has also been called an Ambiguous Loss (Boss, 2016) or an invisible loss (Keirse, 2017;Roos, 2018). ...
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 this way they agreed that chronic sorrow was ongoing and cyclical in nature, as previously identified by Olshanky. Following their work, Eakes, Burke and Hainsworth (1998) discussed the 'Middle-range theory of Chronic sorrow' as a lasting, prevalent sadness. Characteristics associated with chronic sorrow were defined and included: ...
... This personal reflective chronic sorrow is related to the impact on sense of self and any limitations that now exist as a consequence of the injury or illness affecting who they were previously to who they are now. To help identify those experiencing chronic sorrow, as opposed to experiencing 'depression', Eakes, Burke and Hainsworth (1998) developed a 'middle range theory' specifically for chronic sorrow. Their mid-range theory requires 2 specific precursors: ...
... It is the ubiquitous sadness felt that defines chronic sorrow. The midrange theory for recognising chronic sorrow was defined by Eakes, Burke and Hainsworth (1998) to include precursors, triggers (such as trigger events or society behaviour towards the child or family) as well as internal (personal) and external (service) management approaches. What is notable is the continuation of historical views about parents, particularly mothers of children who have SEND; Roos (2002) noted that historically, during the 1960's onwards. ...
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Throughout life children, young people and adults encounter a wide range of losses. Some of these losses are ‘finite’ such as the death of someone close to the family, a friend or a pet. For some children ‘finite’ losses can be non-animate, such as a favourite toy or blanket that they have become attached to. Living with loss is something that all individuals accommodate throughout their lifetime, some more readily than others depending on the loss experience. Grieving is a recognised process of variable time associated with ‘finite’ loss experiences, that helps us understand why we feel the way we do following loss. However, not all loss is finite, yet we still need to grieve for the loss experience. Over the past four to five decades there have been a range of emerging discussions to help us understand our feelings of grief when experiencing ‘non-finite loss’ or ‘ambiguous loss’; much of these discussions tend to be considered within medical fields or related health professions. Yet, for many individuals knowing the feelings they are experiencing are within the ‘norms’ of everyday life might help them to build their own internal and external support systems for coping with their feelings. When there is lack of recognition or support for those who are experiencing a loss that is ambiguous or non-finite ‘chronic sorrow’ may occur. Chronic sorrow reflects the sense of ‘sadness’ that often continues for those who live with ambiguous loss or non-finite loss. Chronic sorrow is fluid in duration and of variable levels yet often remains throughout the lifetime of the individual. This does not mean that these individuals cannot be happy, settled or optimistic- they can- but they also continue to have a level of sense of loss or ‘sadness’ for what was, whilst also managing and living with ‘what is’.The purpose of this book is to open up discussions of chronic sorrow, ambiguous loss and non-finite loss, recognising and acknowledging it’s OK to feel sad, you can ‘miss’ what was and experience a sense of loss without being depressed, you can grieve for ‘what was’ without a timescale for recovering from this grief, you may continue with your life for a number of years and then re-experience a period of loss, the sense of loss may last only a few minutes or may last longer. Most importantly you can develop your internal and external support systems that will help you recognise and accept the sense of loss for what it is and continue on in your life towards a different future
... Perinatal mortality results in the experience of physical loss of the child coupled with symbolic loss that can be felt by parents due to the disparity between the current reality and the desired reality [4], [5]. This loss is expressed through a grief response, which can involve periodic and non-resolution characteristics [6], [7], [8]. ...
... The term "chronic sorrow" was originally coined by Olsansky in 1962 based on his observation of the particular grief response experienced by parents caring for their disabled children. The concept of chronic sorrow was later expanded upon by Eakes, Burke, and Hainsworth in 1998 wherein it was described as a response to significant loss characterized by pervasive, periodic, permanent, and potentially progressive sadness [5]. Chronic sorrow is now widely understood to be a normal response to significant loss [5]. ...
... The concept of chronic sorrow was later expanded upon by Eakes, Burke, and Hainsworth in 1998 wherein it was described as a response to significant loss characterized by pervasive, periodic, permanent, and potentially progressive sadness [5]. Chronic sorrow is now widely understood to be a normal response to significant loss [5]. However, ineffective coping strategies and inadequate support for those experiencing chronic sorrow may increase susceptibility to complications such as clinical depression [9], [10], [11], dysthymic disorder [12], posttraumatic stress disorder, attachment disorder [13], drug dependence, psychosis, and suicidal ideation [14]. ...
Background: Perinatal death results in physical loss of a child as well as symbolic loss (loss of self, hope and self-esteem) experienced by many parents. Loss is often expressed via a grief response that can develop into chronic sorrow. Ineffective coping strategies may increase susceptibility to complications associated with chronic sorrow. These complications can include clinical depression, dysthymic disorder, post-traumatic stress disorder, attachment disorder, drug dependence, psychosis, and suicidal ideation. Therefore, it is crucial to understand the barriers and facilitators to chronic sorrow particularly among vulnerable populations. Aim: To explore the experience of chronic sorrow among Indonesian women who have suffered perinatal loss. Methods: The present qualitative study utilized a descriptive phenomenological approach. Participants included women who experienced chronic sorrow due to perinatal loss within the past seven weeks to three years. Maximum variation sampling was used based on women’s current number of children. Data were collected using semi-structured interviews and analyzed using a modified Stevick-Colaizzi-Keen method. Results: Three key themes emerged from the data: (1) recurrent experiences of grief are common particularly when exposed to certain triggers (memories from pregnancy, mementos); (2) adequate coping strategies and emotional support are needed to help treat grief; and (3) specific characteristics of chronic sorrow are associated with perinatal loss, such as grief that feels diminished and the presence of another child serving as both a cure and a trigger of sorrow. Conclusion: Chronic sorrow as a result of perinatal loss is experienced repeatedly when mothers face certain triggers. We have identified two characteristics (diminished grief, having another child serve to both cure and trigger sorrow) that are specific to the experience of chronic sorrow compared to that of general grief. It is important to understand the experience of chronic sorrow and how coping strategies and a support system can help grieving mothers to overcome their loss.
... A Teoria da Tristeza Crônica visa melhorar a qualidade de vida das pessoas com tristeza crônica resultante de uma experiência de perda significativa, real ou simbólica em pacientes com doenças crônicas progressivas que ameaçam a continuidade da vida e seus familiares que têm a responsabilidades de cuidar, na morte e no luto, e atingir estratégias de enfrentamento positivas relacionadas às intervenções de enfermagem e aos resultados específicos para essas pessoas. 15 Por essa razão, pode ser considerada uma teoria de médio alcance e preditiva. ...
... A teoria também é fundamentada no modelo de estresse e adaptação, no qual formou as bases para se entender como as pessoas lidam com a tristeza crônica. [15][16] No que se refere ao conteúdo da teoria, é articulado por meio de seus conceitos e proposições. Os conceitos de uma teoria são palavras ou grupos de palavras que expressam uma imagem mental de algum fenômeno e atribuem significado ao que pode ser imaginado ou observado por meio dos sentidos. ...
... Os conceitos de uma teoria são palavras ou grupos de palavras que expressam uma imagem mental de algum fenômeno e atribuem significado ao que pode ser imaginado ou observado por meio dos sentidos. 11 A Teoria de Médio Alcance da Tristeza Crônica é sustentada pelos seguintes conceitos: [15][16] Tristeza crônica -recorrência periódica de tristeza permanente e difundida ou de outros sentimentos relativos ao luto decorrente de uma experiência de perda. ...
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.
... 10, p. 179 A middle-range Theory of Chronic Sorrow proposed by Eakes et al. includes antecedents, trigger events, and management methods. 10 Antecedents of chronic sorrow include the experience of a significant loss and the resulting unresolved disparity. 10 In parents of children with PNDI, the antecedents of chronic sorrow includes the birth of a child and the disparity that results between the parent's expectations of a healthy child and the reality of having a child with PNDI. ...
... 10 Antecedents of chronic sorrow include the experience of a significant loss and the resulting unresolved disparity. 10 In parents of children with PNDI, the antecedents of chronic sorrow includes the birth of a child and the disparity that results between the parent's expectations of a healthy child and the reality of having a child with PNDI. Trigger events are situations that highlight the disparity and recurrent losses and initiates or exacerbates feelings of grief. ...
... Trigger events are situations that highlight the disparity and recurrent losses and initiates or exacerbates feelings of grief. 10 While many of these triggers are negative, such as a health crisis or missed developmental milestones by the child, triggers can also be positive and lead to parental self-reflection, personal growth, meaning-making, and improved coping. 11 Parents of children with PNDI may use several management methods to deal with their chronic sorrow. ...
Background:
Music is a powerful therapeutic intervention to promote physical and psychological health, healing, and well-being. In pediatric palliative care, music therapists are often involved in preloss care. Heartbeat recordings (HBRs) synchronize the rhythm of the heartbeat into a favorite song. In preloss care, HBRs show promise in helping parents of children with progressive neurodegenerative illnesses (PNDI) cope with their chronic sorrow and the loss of their child.
Objective:
To explore the lived experience of HBRs for bereavement in the lives of parents of children with PNDI.
Design:
Phenomenological study.
Setting/Subjects:
Purposeful sample of 11 English-speaking parents of children with PNDI receiving palliative care services in an academic pediatric hospital were interviewed three months after receiving their child's HBR.
Measurements:
A semistructured interview guide was used to collect data concurrently with the mind mapping process.
Results:
Data from interviews revealed 4 major themes and 10 subthemes: (1) Bifocal View (parental lens vs. medical lens); (2) Navigating Life and Relationships (caregiver fatigue, grief and loss, marriage, job, brought us together, paying it forward); (3) Coping through Spirituality; and, (4) Legacy Creation (HBR as a connection, song selection).
Conclusions:
Parents of children with PNDI experience chronic sorrow. The HBR assisted in meaning-making that validated the child's life and supported the parents' expression of grief and their ability to cope. Further research is needed to validate the impact of HBRs in diverse populations.
... Although it is viewed as a normal reaction, chronic sorrow can progress to a pathological state such as depression if coping styles are ineffective [9]. Recognizing chronic sorrow among caretakers of patients with SCD and maladaptive coping strategies is useful in ensuring that effective strategies are designed to deal with negative effects in a timely manner [8,9]. ...
... Data was analysed using deductive thematic analysis. Deductive thematic analysis was used because the researchers conceptualised the study from a theory of chronic sorrow where they narrowed down to themes were identified [8]. The middle range theory of chronic sorrow gives elaborate explanation about this phenomenon. ...
... Caregivers of patients with SCD experience chronic sorrow as described by Eakes et al. (1998). In this study, caretakers experienced different aspects of CS such as disparity, periodic recurrence of emotions which were triggered by numerous factors. ...
Background
Worldwide, sickle cell disease is recognized as one of the major causes of morbidity and mortality. Caregivers and patients with such chronic illnesses experience economic, physical, social and psychological distresses which may lead to chronic sorrow. Chronic sorrow is viewed as a normal reaction to loss, however it can progress to a pathological state such as depression if the coping styles are ineffective. Therefore, the aim of this study was to explore the existence of chronic sorrow, triggers and coping with grief related feelings among caretakers of children with sickle cell disease.
Methods
A descriptive qualitative study was conducted. Twelve in-depth interviews were conducted with eligible participants who were purposively selected. Deductive thematic analysis methods were used for data analysis.
Results
Many (9 out of 12) of the caretakers experienced chronic sorrow. The grief related feelings were triggered by health worker related, disease related and support related factors. Caretakers used both external and internal coping strategies. External support was derived from community, family and health facility. Internal coping strategies were behavioral and cognitive.
Conclusion
Caretakers of children with sickle cell disease experienced chronic sorrow and employed both internal and external coping strategies to deal with it, which could be either effective or ineffective. This study recommends that health workers should routinely screen for chronic sorrow among caretakers of children with sickle cell disease and assist caretakers to strengthen effective coping strategies to ameliorate the negative effects of chronic sorrow.
... 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. ...
... It focuses, for example, on the grief process, the application of the chronic sorrow theory, and the characteristics of chronic sorrow (Ahlström, 2007;Fernández-Alcántara et al., 2016;Fernández-Á valos et al., 2021;Hewetson and Singh, 2009;Lowes and Lyne, 2000;Northington, 2000). It explores the implications for practice (Bowes et al., 2009;Glenn, 2015;Lowes and Lyne, 2000;Scornaienchi, 2003;Vitale and Falco, 2014) encounters, triggers, coping, and support (Chang et al., 2018;Coughlin and Sethares, 2017;Eakes et al., 1998;Fernández-Á valos et al., 2021;Fraley, 1986;Glenn, 2015;Nikfarid et al., 2017;Olwit et al., 2018;Whittingham et al., 2013), or differences between fathers and mothers (Coughlin and Sethares, 2017;Damrosch and Perry, 1989;Hobdell, 2004). ...
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.
... For more details, the reader is referred to the published protocol) 11 Common to both approaches. Parents carried out either intervention at home using a written program 28 . Bimonthly home visits were provided by a trained pediatric therapist, in addition J o u r n a l P r e -p r o o f to bi-monthly virtual remote sessions. ...
... 24 Selection of the ability level was guided by HAI scores. 25,26 Both interventions supported parents' mental health and responsive parenting based on emotional availability 27,28 and Acceptance and Commitment Therapy (ACT). 29 Parents provided therapy in 1 to 3 sessions per day, 5 days/week for a total of 6 to 9 ...
... The middle-range theory of chronic sorrow is relevant here. Developed in 1998 by Eakes, Burke, and Hainsworth, chronic sorrow theory contradicted previous theories of grieving that emphasized a final stage of acceptance or resolution of loss (Eakes et al., 1998). This consortium of researchers showed that sorrow can become chronic, based on their research with bereaved parents, mothers of disabled children, and women living with the increasing debilities of multiple sclerosis. ...
... This consortium of researchers showed that sorrow can become chronic, based on their research with bereaved parents, mothers of disabled children, and women living with the increasing debilities of multiple sclerosis. The chronic sorrow theory normalized the periodic recurrence of grief, triggered by events such as anniversaries (Eakes et al., 1998). I suspect that many COVID-19 survivors will feel acute pain on the anniversary of the death of their loved ones in nursing homes or ICUs, with whom they could not be present and for whom no funeral services could be held. ...
... On the surface, they could handle the situation, but at the next moment the grief was accentuated when the spouse was confronted with something that worked as a trigger. From the perspective of the theory of chronic sorrow, it is a part of the normal grieving process that happens in crucial situations and for a lot of people during a lifetime [46][47][48]. Chronic sorrow has to do with having lost something personally valuable. In our study, this was the togetherness with a loved partner. ...
... In our study, this was the togetherness with a loved partner. Permanent grief that is mostly managed in everyday life can become overwhelming with strong emotions at triggers [46][47][48]. In our study, reported triggers included entering the couple's previously shared bedroom or living-room. ...
In aging societies worldwide, spouses take on great responsibility for care when their partner continues to live at home. Nursing home placement occurs when the partner becomes too frail due to multimorbidity, and this will cause a change in the spouse’s life. This study aimed to explore the spouse’s experience of their partner’s move to a nursing home. Two interviews were conducted at 9-month intervals within the project entitled “Implementation of Knowledge-Based Palliative Care in Nursing Homes”. Thirteen spouses from both urban and rural areas were included, with an age-range of 60–86 years (median 72). Qualitative content analysis was performed. The main findings were captured in two themes: Breaking up of close coexistence and Towards a new form of daily life. The first encompassed processing loneliness, separation and grief, exhaustion, increased burden, and a sense of guilt. The second encompassed a sense of freedom, relief, acceptance, support and comfort. Professionals in both home care and nursing home care need to develop and provide a support programme conveying knowledge of the transition process to prevent poor quality of life and depression among the spouses. Such a programme should be adaptable to individual needs and should ideally be drawn up in consultation with both partners.
... 45 The middle-range theory of chronic sorrow addresses the issue of chronic illness leading to experiencing ongoing loss with no predictable end and that hospitalizations necessitated by acute events in an illness trajectory may increase the feeling of loss. 46 Similar to emotional distress, grief is associated with depression. 47 This focus on loss provides a different perspective on future self-management support in acute phases of a chronic illness. ...
... However, in focusing on loss and grief, providing an empathic presence for the patient to grieve and talk about his or her perception of loss is a further intervention supporting self-management. 46 With respect to symptom evaluation, patients mainly referred to attitudes about treatment. However, due to limited data, the exact meaning of an exacerbation for patients remains unclear, as well as how exacerbations affect beliefs about symptoms. ...
Objective
The aim of this review was to describe how patients experience an exacerbation of cystic fibrosis in terms of symptom management.
Methods
A systematic literature search was performed in MEDLINE, CINAHL, EMBASE, PSYCINFO and ASSIA. Studies were included that contained any direct quotes or summaries of quotes from patients with cystic fibrosis aged 16 or older and were related to symptom experience and management during an exacerbation. Framework analysis, guided by Symptom Management Theory, was used to present the findings.
Results
The review included 18 qualitative studies. In addition to physiological symptoms, patients highlighted the significant role of psychological symptoms. Delayed help-seeking was a common first response. Participants choose their self-management strategies taking both physiological and psychological symptoms into account. Maintaining normality was an important short-term outcome for patients, leading to conflict with health professionals. Patients’ symptom management during exacerbation was greatly influenced by the structure of cystic fibrosis care.
Discussion
Our findings provide an initial understanding of factors influencing patient self-management during an exacerbation. The transferal of these findings into clinical practice will provide a basis for shared goal setting and intervention planning. In addition, our findings have implications for future development of patient-reported outcome measures and intervention research.
... Bu süreçte ebeveynlerde ekonomik yetersizlikler, iş kaybı, sosyal işlevde bozulma, uzun süreli stres ve stres ile baş etme yöntemlerinde yetersizlik, engelli çocuğun bakımındaki güçlükler nedeniyle ortaya çıkan kas-iskelet sisteminde hastalıklar/ağrılar, uyku düzeninde bozulma, düşük düzeydeki yaşam doyumu ve aile içerisindeki ilişkilerde bozulma gibi olumsuz kazanımlar ortaya çıkmaktadır (7,8). Çocuğa tanı konmasıyla birlikte ebeveynlerde yas süreci ortaya çıkarken uyum gerçekleşmediğinde kronik stres olgusu gelişmektedir (9,10,11). ...
Giriş: Çocuklarda engellilik yalnızca çocuğun değil ebeveynlerinin de yaşamını etkilemektedir. Engelli çocuğun ebeveynlerinde engelliliğe karşı olumlu ve olumsuz uyumlar meydana gelmektedir. Amaç: Bu araştırma, “Positive Gain Scale (PGS)” Türkçe’ ye uyarlanarak geçerlik ve güvenirliğinin belirlenmesi ve engelli çocuğu olan ebeveynlerin olumlu deneyimlerini tanımlamak amacıyla yapıldı. Yöntem: Bu araştırma metodolojik ve tanımlayıcıdır. Evren, Muğla ilinde bulunan 0- 18 yaş aralığındaki ortopedik engelli çocukların ebeveynleridir. Örneklem, 72 ortopedik engelli 0- 18 yaş aralığındaki çocukların ebeveynleridir. Güvenirlik araştırmasında “Aileyi Tanıtıcı Bilgi Formu” ve “Positive Gains Scale” Türkçe uyarlaması kullanıldı. Ebeveynlerden izin alındıktan sonra veriler toplandı. Geçerlik için; içerik-kapsam geçerliği, ölçüt-bağımlı geçerliği ve yapı geçerliği, güvenirlik için değişmezlik ve iç tutarlılık yöntemleri kullanıldı. Bulgular: Kaiser-Meyer Olkin kat sayısı 0,726 Bartlett testi χ2 değeri 171, 755, p=0,001 olarak saptandı. Ölçeğin tamamının Cronbach alfa kat sayısı 0,794 olarak belirlendi. Açıklayıcı faktör analizleri sonucunda ölçeğin orijinal haline yakın sonuçlar elde edildi. Doğrulayıcı faktör analizinden elde edilen verilerle, ölçeğin alt boyutlarına ait faktör yükleri doğrultusunda geçerliğinin olduğu saptandı. Sonuç: Araştırmanın sonunda ortopedik engelli olan Serebral Palsi tanılı çocukların ebeveynlerinde Pozitif Kazanımlar Ölçeği’ nin Türk dili için geçerli ve güvenilir olduğu belirlendi.
... These consequences negatively affect the quality of life of individuals with chronic and palliative care-requiring illnesses [1]. Nursing interventions, enhancing the autonomy of individuals and facilitating finding new meaning in life through positive thinking techniques, have been reported as beneficial for coping with chronic sorrow [7][8][9]. Another way to increase an individual's autonomy in palliative care is to promote dignity, a unique feeling allowing the individual to feel as "worthy of respect," influenced by the person's self-confidence and how they are treated by others [10]. Meaning-centered interventions can be used to increase an individual's sense of self-worth and dignity, through finding meaning in one's life, thereby enhancing spiritual well-being and overall quality of life [11,12]. ...
Purpose
Palliative care patients experience chronic sorrow with loss in dignity and meaning in life. Logotherapy is an effective way to cope with loss. This study aimed to evaluate the effect of logotherapy on chronic sorrow, dignity, and meaning in life of palliative care patients.
Methods
This study was conducted with 58 adults hospitalized due to advanced cancer and assigned to either intervention or control group by simple randomization. Data were collected with descriptive information form, Palliative Performance Scale, Patient Dignity Inventory (PDI), Prolonged Grief Disorder Scale-Patient Form (PGDS-PF), and Meaning in Life Questionnaire (MIL) on admission, at the 4th and 8th weeks. The intervention group received eight sessions of logotherapy. The control group received routine care.
Results
The mean scores of PGDS-PF (p = 0.01), PDI (p = 0.01), and searched meaning subdimension of MIL (MIL-SM) (p = 0.11) decreased in the intervention group compared to controls, both at the 4th and 8th week evaluation. The mean score of the present meaning subdimension of MIL (MIL-PM) (p = 0.02) increased at the 4th week evaluation but decreased at a non-statistically significant level at the 8th week. The mean scores of PGDS-PF and PDI increased in the control group while MIL-PM and MIL-SM decreased, both at the 4th and 8th week evaluation.
Conclusions
Logotherapy was found effective in decreasing the sorrow and dignity-related distress of palliative care patients, while increasing finding meaning in life. Logotherapy is recommended to be used by palliative care professionals to empower patients.
Trial registration
Clinicaltrials registration number and date: NCT05129059, 19/01/2021.
... Nightingale's 'environment' theory (Nightingale, 1863) Henderson's principles of nursing care; middle range theory which is more specific and directed at specific populations, for example, theory of illness trajectory (Corbin & Strauss, 1988), theory of comfort (Kolcaba, 1994) and chronic sorrow (Eakes et al., 1998); Practice theory, or micro-range theory, applies to specific situations, contexts, interventions and explains outcomes, for example, interpersonal care theory (Kim, 2020). It is also worth noting that the classification of the level of theory was not always unanimously agreed upon and may be subject to debate (Higgins & Shirley, 2000). ...
Aim
This article appraises models and theories related to advanced nursing practice. It argues that while the role of the advanced nurse practitioner builds on and extends beyond traditional nursing, it remains firmly grounded in ‘caring’.
Background
The stereotype that nurses ‘care’ and doctors ‘cure’ is fading. Increasingly, nurses have crossed boundaries and conducted independent assessment, diagnosis, prescribing and consultation, which used to be the doctor's role. Confusion and argument have arisen due to the higher‐level practice of the advanced nurse practitioner, as many questions where these ‘doctor nurses’ stand.
Design
A literature review.
Data Sources
Databases, including CINAHL, Medline and Google Scholar, were searched.
Method
Databases were searched, and relevant studies and review articles from 1970 to 2023 were identified using the following keywords: ‘advanced nurse practitioner’, ‘nurse practitioner’, ‘advanced nursing’, ‘advance practice’, ‘nurse practitioner’, ‘nursing theory’ and ‘nursing model’.
Results
Although advanced nurse practitioners identify themselves as nurses, there is limited use of nursing theory to conceptualize this new level of practice and to define their contribution to the multi‐disciplinary team. It is noted that a holistic approach to personalized patient care, based on therapeutic relationships and effective communication, may help us identify the unique contribution of the advanced nurse practitioner.
Conclusions
The development of advanced nursing theory needs to capture this holistic approach and its caring element to recognize the value and strengthen the identity allegiance of this hybrid role.
Implications for the Profession and/or Patient Care
Holistic approach and patient‐centred care, effective communication and the therapeutic relationship are strong characteristics relating to ANP practice, the latter of which is yet to be clearly defined and captured in nursing theories. Conceptualizing ANP practice and capturing their valuable nursing care will enable better understanding and clarity for the role to realize its full potential.
... Una de las herramientas utilizadas para la valoración del caso ha sido la utilización de la Teoría de Rango Medio (TRM) «Middle-Range Theory of Chronic Sorrow», su traducción al español «Teoría de Rango Medio sobre Aflicción Crónica» (Eakes, et al., 1998). ...
The aging process involves an accumulation of significant losses, and if it occurs in a person with a chronically high-complexity illness, they would find themselves in a vulnerable situation. Therefore, providing effective care requires a person-centered approach, necessitating support to cope with the new situation. In 1998, Eakes et al. developed a Middle Range Theory (MRT) focused on chronic sorrow, offering a conceptual framework to understand individual reactions and guide professionals in addressing a person who has experienced a significant loss.
... It was expressed that clinicians should give factual information about the child's diagnoses and allow the parent to talk about how their child's diagnoses made them feel, as a helpful process towards healing and reintegration of life (Olshansky, 1962) as well as mention common treatment and procedures during the initial engagement phase of interacting with these families (Coughlin & Sethares, 2017). Chronic sorrow is a cyclical process where a triggering event occurs and the feelings of chronic sorrow reappear, therefore counseling would have to reoccur as feelings of chronic sorrow re-surfaced (Coughlin & Sethares, 2017;Eakes et al., 1998;Olshansky, 1962;Parrish, 2010;Wickler, 1981). ...
Purpose: Chronic sorrow was assumed to be a common feeling
experienced by parents of children with disabilities, and if not supported properly it would impede a parent’s ability to support their child through the treatment of a disability and other life stressors that come with a lifetime diagnosis. This research looked to see how family type, the child’s diagnosis, feelings of support expressed by the parent, societal stigma about disability, and coping abilities impacted the parents’ experiences of chronic sorrow and who was most at risk of chronic sorrow.
Methods: Through a positivist research design, the researcher addressed the rate of occurrence of the experience of chronic sorrow by parents with children with disabilities. The researcher used the quantitative method of surveying parents to see the effects of family structures on the ways that parents cope with their experience of chronic sorrow. Sampling methods utilized a bivariate correlation of multiple interval ratio variables. The only significant correlation found was between ratings of chronic sorrow and distress of comparing the disabled child to their other non-disabled children.
Implications: This study addressed a variety of factors (both protective and risk factors) that social workers should be observant of in assessing parents of children with disabilities and their experiences with feelings of chronic sorrow. With this knowledge, social workers would then be better prepared to choose interventions that fit the family’s needs while considering the stress levels of those parents.
... (8,9) Como se ha mencionado, el proceso de adaptación al duelo es un área propia de intervención en los profesionales de enfermería, por lo que este estudio tiene como propósito comprender el duelo disfuncional de familiares de pacientes fallecidos por COVID-19, a partir de la teoría intermedia de Gaskill, Lermann y Hainsworth, enfermeras norteamericanas, quienes propusieron la Teoría de rango medio del duelo disfuncional, basada en la adaptación al estrés de la Teoría de Lazarus y Folkman (1989). (10) El aporte principal a la disciplina u otros campos sanitarios, es la necesidad de desarrollar competencias más elevadas para gestionar un duelo eficaz. ...
Introducción: El duelo es una crisis de vida que las personas pasan al fallecer un ser querido, desde la perspectiva de la teoría intermedia de Gaskill, Lermann y Hainsworth, sustentaron la Teoría del duelo disfuncional, la cual sostiene que es necesario plantear métodos de gestión para afrontar el duelo que lleve al individuo a restablecer su estabilidad emocional.Objetivo: Comprender el duelo disfuncional de los familiares de pacientes fallecidos por la COVID-19.Métodos: El abordaje teórico metodológico fue la fenomenología social de Alfred Schütz. El escenario fueron hospitales principales de la ciudad de Lima. Los participantes fueron14 familiares seleccionados mediante saturación de discursos, utilizándose como técnica de recolección de datos la entrevista fenomenológica, como instrumento una guía de entrevista y para el análisis de los datos se utilizó el análisis temático.Resultados: Se utilizó análisis fenomenológico con el análisis ideográfico y nomotético, los cuales dieron lugar a las siguientes categorías: Categoría I: Manifestando experiencias vividas ante la pérdida de su ser querido por COVID-19. Categoría II: Afrontando el proceso de duelo al fallecer intempestivamente un ser querido por COVID-19. Categoría III: Sintiendo resignación ante la pérdida de su ser querido.Conclusiones: Las categorías halladas permiten comprender el duelo vivido por los familiares durante la pandemia que van desde la incomprensión hasta la aceptación de la pérdida del ser querido de manera intempestiva por esta enfermedad que ha vulnerado a la humanidad. Existe suficiente marco conceptual y teórico sobre el duelo para elevar la preparación del personal sanitario y de enfermería.
... Grief apparently exists in these families, but it is unclear whether it is caused by the turmoil brought on by adolescence or if it is a part of the ongoing turmoil brought on by the disease. Eakes et al. [17] found adisparity experienced by parents of children with diabetes as they face daily situations that remind them that their children have special needs and cannot have a completely normal life. Parents of children with diabetes often describe the situation as a period of constant confusion, guilt, fear, and in some cases intense sadness [18]. ...
Chronic diseases, such as childhood diabetes mellitus (DM), are a complex and continuous struggle as well as a great challenge both for the children who face the disease and for their parents. DM is characterized by the complex management of therapeutic treatments, thus causing physical and psychological complications infamily members. There are many families who, upon hearing the diagnosis of their child with DM, stand still in front of these new facts as their lives change. All these unprecedented conditions cause parents intense stress and discomfort, leading them to a mental burden, as the only thing that concerns them upon diagnosis is how the family will survive in the face of the current conditions they are experiencing as well as the future of the sick child. The purpose of this brief literature review is to present the research findings related to the psychological burden of families withchildren with DM, focusing on the quality of life and stress.
... Grief apparently exists in these families but it is unclear whether it is caused by the turmoil brought on by adolescence or is part of the ongoing turmoil brought on by the disease. End of a study of Eakes et al. (17) found the disparity experienced by parents of children with diabetes as they face daily situations that remind them that their children have special needs and cannot have a completely normal life. Parents of children with diabetes often describe what they are going through as a period of constant confusion, guilt, fear, and in some cases intense sadness (18). ...
Chronic diseases such as childhood Diabetes Mellitus (DM) are a complex and continuous struggle as well as a great challenge both for the children who face the disease and for their parents. DM is characterized by the complex management of the therapeutic treatment thus causing physical and psychological complications in family members. There are many families who, upon hearing the diagnosis of their child with DM, stand still in front of these new facts as their lives change. All these unprecedented conditions cause parents intense stress, discomfort and mental burden as the only thing that concerns them now is how the family will survive in the face of the current conditions they are experiencing as well as the future of the sick child. The purpose of this brief literature review is to present the research findings which are related to the quality of life among parents of children and adolescents with DM.
... 9,10,12 The pervasive sadness and grief regarding these continual losses is described as chronic sorrow. 13,14 Parents also experience grief towards the bereavement itself, known as anticipatory grief. 11 How parents experience and manage grief during the child's end of life is less well understood. ...
Aim:
Parents are increasingly confronted with loss during their child's end of life. Healthcare professionals struggle with parental responses to loss. This study aimed to understand parental coping with grief during their child's end of life.
Methods:
A grounded theory study was performed, using semi-structured interviews with parents during the child's end of life and recently bereaved parents. Data were collected in four children's university hospitals and paediatric homecare services between October 2020 and December 2021. A multidisciplinary team conducted the analysis.
Results:
In total, 38 parents of 22 children participated. Parents strived to sustain family life, to be a good parent, and to ensure a full life for their child. Meanwhile parents' grief increased because of their hypervigilance towards signs of loss. Parents' coping with grief is characterised by an interplay of downregulating grief and connecting with grief, aimed at creating emotional space to be present and connect with their child. Parents connected with grief when it was forced upon them or when they momentarily allowed themselves to.
Conclusion:
The parents' ability to engage with grief becomes strained during the end of life. Healthcare professionals should support parents in their search for a balance that facilitates creating emotional space.
... Olshansky (1962) Kendall, 2005) .) Eakes et al. (1998) (Kendall, 2005) . كين أداة استخدام تم المزمن للحزن دال (Kendall, 2005) في المزمن، الحزن مستوى لقياس ...
... Chronic sadness characterized with spells of pervasive melancholy, sorrow, or other grief-related experiences could explain why women who experienced perinatal loss had an increased risk of postnatal depression. 75 We found C-section a relevant correlate of PPD in SSA. It is said to be initiated by surgical trauma and the financial burden of the procedure and stigmatization for surgery in Africa, particularly in Nigeria. ...
Postpartum depression (PPD) is a common mental health challenge in resource-constrained sub-Saharan Africa (SSA). Characterizing its correlates will aid prediction, early detection, and pre-emptive interventions. This review aimed to systematically synthesize and stratify PPD correlates in sub-Saharan Africa. The review was structured as per the Preferred Reporting Item for Systematic Reviews and Meta-Analyses. We included studies that reported the correlates of PPD in SSA. We searched PubMed, Medline, CINAHL, Academic Search Complete, and PsycINFO for relevant peer-reviewed literature. The correlates of PPD constituted the primary outcome. A random effect model was fitted to estimate the pooled correlation coefficient per correlate. The clinical relevance of correlates was stratified based on strength of correlation (r) and recurrence (f). The mean age of the participants was 27.0 ± 6.0 years, and 68.6% of participants had completed at least secondary education. The correlates of PPD in SSA were intimate partner violence (IPV) ((risk weight (rw) = 2.8; r = 0.212 (confidence interval (CI): 0.11–0.31), poor social support (PSS) (rw = 1.9; r = 0.250 (0.133–0.361)), unwanted pregnancy (UP) (rw = 1.6; r = 0.279 (CI: 0.14–0.41); I ² = 95.89), and maternal age (MA) (rw = 0.96; r = 0.27 (CI: 0.154–0.37)), among others. A cumulative risk weight of ⩾0.95 was predictive of PPD and marks the critical point at which preemptive interventions should be instituted. The stratification of risk PPD factors and computation of risk stability index are useful in identifying the clinical significant risk factors. The provision of critical risk point will simplify early detection thus facilitating cost-effectiveness. Of the correlates of PPD in SSA, IPV, PSS, UP, and MA are the most important. Targeted screening and pre-emptive interventions for women with high risk weight may be a reasonable strategy both in the short and long term.
... This study revealed that parents experienced pain and confusion following a perinatal death, consistent with previous studies [19,34,[50][51][52]. The pain and confusion experienced could be a manifestation of the disparity between expectation of a baby who is alive and perinatal death [53]. Moreover, the occurrence of perinatal death is abrupt and unexpected, resulting in pain. ...
Background
Worldwide, two million babies are stillborn and 1.8 million babies die before completing seven days of life. Approximately 4% of pregnant women in Uganda experience perinatal death. The response following a perinatal death tends to be socio-culturally constructed. Investigating the unique personal experiences of parents from a low-income setting with unique cultural beliefs and practices is crucial for the design and implementation of appropriate interventions.
Objective
To describe the lived experiences of parents following perinatal death in Lira district, Northern Uganda.
Methods
A qualitative study was carried out drawing on the tenets of descriptive phenomenology. We conducted 32 in-depth interviews in Lira district, Northern Uganda between August 2019 and September 2020 with 18 women and 14 men who had experienced a stillbirth or an early neonatal death within the preceding 2 years. Participants were selected from different families and interviewed. A local IRB approved the study. All in-depth interviews were audio-recorded, transcribed, translated, and data were analysed using a content thematic approach. Key findings were discussed based on Worden’s Four Tasks of Mourning theory.
Results
The themes that emerged from the analyses included reaction to the perinatal loss and suggestions for support. The participants’ immediate reactions were pain, confusion, and feelings of guilt which were aggravated by the unsupportive behaviour of health care providers. Men cumulatively lost financial resources in addition to facing multiple stressful roles. Delayed reactions such as pain and worries were triggered by the sight of similar-age-babies, subsequent pregnancy losses, and marital challenges. Participants recommended emotional support and management of postnatal complications for parents faced with perinatal loss.
Conclusion
Losing a baby during the perinatal period in a resource-constrained setting negatively affected both gender. In addition, men suffered the loss of financial resources and the burden of multiple stressful roles. Acknowledging the pain and offering support to the grieving parents reinforce their coping with a perinatal loss. In addition to family and community members, health care providers need to provide emotional support and postnatal care to parents who experience perinatal death.
... Kesedihan kronis diperkenalkan ke dalam literatur lebih dari 30 tahun yang lalu untuk menandai gelombang kesedihan yang berulang yang diamati pada orang tua anak-anak dengan kekurangan mental saat mereka berjuang untuk mengatasi hilangnya "anak yang sempurna"(Olshansky, 1962). Kesedihan yang meluas dan berulang-ulang yang disukai Olshansky sebagai dukacita kronis dipandang sebagai respons normal terhadap gangguan normalitas yang diantisipasi( Eakes, Georgene G;Burke, Mary L;Hainsworth, Margaret A, 1998). ...
Keperawatan sebagai bagian integral pelayanan kesehatan merupakan suatu bentuk pelayanan professional yang didasarkan pada ilmu keperawatan. Pada perkembangannya ilmu keperawatan selalu mengikuti perkembangan ilmu lain, mengingat ilmu keperawatan merupakan ilmu terapan yang selalu berubah mengikuti perkembangan jaman. Demikian juga dengan pelayanan asuhan keperawatan di Indonesia, kedepan diharapkan harus mampu memberikan pelayanan kepada masyarakat secara professional sesuai dengan tuntutan kebutuhan masyarakat serta teknologi bidang kesehatan yang senantiasa berkembang. Pelaksanaan asuhan keperawatan disebagian besar rumah sakit Indonesia umumnya telah menerapkan pendekatan ilmiah melalui proses keperawatan.
Profesi keperawatan adalah profesi yang unik dan kompleks dalam melaksanakan asuhan prakteknya, perawat harus mengacu pada model konsep dan teori keperawatan yang sudah dimunculkan. Konsep adalah suatu ide dimana terdapat suatu kesan yang abstrak yang dapat diorganisir dengan simbol-simbol yang nyata sedangkan konsep keperawatan merupakan suatu ide untuk menyusun suatu kerangka konseptual atau model keperawatan. Kita sedikit mengulas kembali bahwasannya pengertian keperawatan adalah suatu bentuk pelayanan profesional yang merupakan bagian integral dari pelayanan kesehatan, didasarkan pada ilmu dan kiat keperawatan, berbentuk pelayanan bio-psiko-sosial-spiritual yang komprehensif, ditujukan pada individu, keluarga, dan masyarakat, baik sakit maupun sehat yang mencakup seluruh proses kehidupan manusia ( Sumijatun, 2010)
Teori merupakan sekelompok konsep yang membentuk sebuah pola yang nyata atau suatu pernyataan yang menjelaskan suatu proses, peristiwa atau kejadian yang didasari fakta-fakta yang telah di observasi tetapi kurang absolute atau bukti secara langsung. Teori keperawatan adalah usaha-usaha untuk menguraikan atau menjelaskan fenomena mengenai keperawatan. Teori keperawatan digunakan sebagai dasar dalam menyusun suatu model konsep dalam keperawatan yang digunakan dalam menentukan model praktek keperawatan.Keperawatan merupakan pelayanan profesional sebagai dasar perkembangan ilmu dan teori keperawatan karena teori membantu memberikan pengetahuan untuk meningkatkan praktik keperawatan melalui cara menyebutkan, menerangkan, memperkirakan dan mengendalikan fenomena. Keperawatan sebagai profesi memiliki landasan body of knowledge yang kuat, yang dapat dikembangkan serta dapat diaplikasikan dalam praktik keperawatan (Nurachmah, 2010).
Perkembangan ilmu keperawatan tidak dapat terlepas dari pengaruh tokoh-tokoh keperawatan yang mengemukakan berbagai teori keperawatan dan memberikan kontribusi penting dalam menentukan arah keperawatan di masa yang akan datang. Teori adalah sekelompok konsep yang membentuk sebuah pola yang nyata atau suatu pernyataan yang menjelaskan suatu proses, peristiwa atau kejadian yang didasari fakta-fakta yang telah di observasi tetapi kurang absolut atau bukti secara langsung (Hidayat, 2009). Perkembangan teori keperawatan memiliki berbagai tingkatan teori yaitu philosophical theory, grand theory, nursing theory, middle range theori dan practice theory . Pemikiran kritis seorang perawat diperlukan untuk dapat mentransfer teori ke dalam praktik nyata, sehingga dalam penerapannya tidak menyimpang dari maksud dan tujuan yang terkandung dalam teori tersebut. Untuk itulah perlu dilakukan kajian-kajian atau analisis terhadap teori sehingga dapat di rumuskan dalam suatu bentuk aplikasi dan selanjutnya dapat dikembangkan seiring dengan perkembangan ilmu pengetahuan.
Berdasarkan uraian diatas kelompok mencoba melakukan analisis teori tentang support theory yang merupakan bagian dari teori keperawatan chronic sorrow di middle range theory yang dikemukakan oleh Georgene Gaskill Eakes dihubungkan ke dalam practise nursing theory, untuk mengkaji lebih lanjut bagaimana interaksi manusia, lingkungan dan kesehatan dalam praktik pelayanan keperawatan.
... Some theoretical basis for an increased focus of research attention on bereavement grief triggers exists, however. For instance, "triggering events" was included as a feature in a middle-range theory of chronic sorrow (Eakes et al., 1998). That theory was published in 1998, and so was not identified in our literature search. ...
Grief is understandably severe in the first days, if not weeks or months, following the death of a beloved person. Unless the mourner develops complicated grief, which is prolonged severe and impactful grief, the initial acute grief lessens in severity over time, although waves of significant grief will still occur with grief triggers. A scoping research literature review was undertaken in early 2021 to determine how often grief triggers occur, what the most common grief triggers are, the impact of triggered grief, and what can be done (by those not diagnosed with complicated grief) to manage grief triggers and mitigate the effect of them. Nine academic library databases were searched for English-language research reports using the keywords “grief trigger(s)” and “research”: CINAHL, Directory of Open Access (online) Journals, Humanities Index, JSTOR, Medline (Ovid), Periodicals Index Online, PsychArticles, Scopus, and Web of Science. Six research papers relevant for review were published in the last two decades, with some evidence gained on how often grief triggers occur, what constitutes a grief trigger, and the impact of grief triggers. Major gaps in evidence were revealed, despite grief triggers being identified as a major consideration for grief in general and for grief recovery specifically.
... While daily ups and downs are common for a period of weeks and months after a significant loss (i.e., "roller coaster"; Doka, 2017), they seem to be central in parents' loss experience post-pABI, with no dominant strategy. A similar dynamic of peaks and valleys was noted when parenting a child with a chronic disability (e.g., Damrosch & Perry, 1989), emphasizing the role "trigger events" (Eakes et al., 1998) play in the periodic resurgence of chronic sorrow. Conversely, in pABI, cognitive deficits and behavioral instability serve uniquely as triggers, being vivid daily reminders of the loss. ...
This grounded theory study aims to map, conceptualize, and theorize the emotional loss experienced by parents following their child’s pediatric acquired brain injury (pABI). Data were obtained from 47 semi-structured interviews conducted with parents (72% mothers) at least 1 year following pABI. The study’s theory of “concurrent ropes and ladders” emerged from a process of initial in vivo coding followed by focused and thematic coding. Codes were consolidated into five thematic categories capturing parents’ emotional continuous loss experience: (a) comparing life before and after, (b) struggling to construct new realities, (c) recognizing instability and permanency, (d) adjusting and readjusting, and (e) grieving as an emotional shadow. These categories are at work simultaneously in parents’ accounts, thus supporting a model of dynamic concurrency within and across their lived experiences. Recommendations for practitioners were derived from the theory to support parents’ emotional coping with living loss throughout the chronic stage.
... Parental experience has previously been described by a range of emotional states−from mourning to illness acceptance and hope (Bregman, 1980;Gagliardi, 1991b). However, the grief process in DMD may be more efficiently explained by the chronic sorrow model (Eakes, Burke, & Hainsworth, 1998). Instead of reaching a final acceptance of loss and some form of grief resolution, the person will re-experience grief reactions every time the disorder deteriorates. ...
... The disability of a child involves three-way interactions between the child experiencing this disability, the affected family and the external environment in which the disability occurs. This experience also results in economic difficulties for improving the condition of the special needs children (Emerson et al., 2009), mourning (Eakes et al., 1998) stress (Newacheck et al., 2004) and negative effects on the quality and continuity of family relationships (Hartley et al., 2010). Despite all the difficulties they face, research shows that many families of children with special needs also cope with their stress effectively (Graungaard, Andersen & Skov, 2011;Green, 2007). ...
DOI: 10.14812/cufej.749645 The purpose of this study was to explore hope as a mediator in the relationship between self-compassion and resilience in parents of children with special needs. Participants of the study were 120 parents (95 females, 25 males). The preliminary results showed that resilience scores of the participants don't vary as a function of gender, income, education level and age. The results of the path analysis yielded that the model fit indices of the proposed model are perfect (χ 2 /df=.03, p.001; RMSEA= .00; CFI=1 .00; TLI= 1.00; GFI=.99). Examination of the relationships between the variables yielded that there are significantly positive connections between self-compassion and hope and also between hope and resilience. The model was found to explain a 5% variance in hope scores and 16% variance in resilience scores of parents of children with special needs. These results were discussed in line with the relevant literature as well as possible interventions for cultivation of resilience in these parents. Bu çalışmanın amacı, özel gereksinimli çocukların ebeveynlerinde öz-şefkat ve psikolojik sağlamlık arasındaki ilişkide umudun aracı rolünü incelemektir. Çalışmanın katılımcıları 120 ebeveynden (95 kadın, 25 erkek) oluşmaktadır. Yapılan ön analizler psikolojik sağlamlığın cinsiyet, gelir, eğitim düzeyi ve yaşa göre anlamlı düzeyde farklılaşmadığını ortaya koymuştur. Yol analizi sonuçları, önerilen modelin model uyum indekslerinin mükemmel olduğunu göstermiştir (χ 2 / df = .03, p .001; RMSEA = .00; CFI = 1.00; TLI = 1.00; GFI = .99). Değişkenler arasındaki ilişkilerin incelenmesi sonucunda, öz-şefkat ve umut arasında ve umut ile psikolojik sağlamlık arasında anlamlı derecede pozitif yönde ilişkiler olduğu bulunmuştur. Modelin özel gereksinimli çocukların ebeveynlerinin umut puanlarında %5 ve psikolojik sağlamlık puanlarında %16 düzeyinde bir varyans açıkladığı bulunmuştur. Bu sonuçlar, ilgili literatür ve bu ebeveynlerde psikolojik sağlamlığı geliştirmeye yönelik olası müdahaleler doğrultusunda tartışılmıştır.
... We believe that the type of emotional distress expressed by the mothers in this study sample falls under the general description of chronic sorrow. "Chronic sorrow" is a term used to describe the pervasive, recurrent sadness experienced by parents of children with a chronic illness or disability that has been classified as permanent, periodic, and progressive (Eakes et al., 1998;Olshansky, 1962). Although chronic sorrow of parents of children with disabilities has been widely documented across disability literature (see Coughlin & Sethares, 2017, for a review), these studies included families of children with potentially life-threatening illnesses (e.g., congenital heart disease, sickle cell disease, cancer) or demonstrable life-altering disabilities (e.g., cerebral palsy, neural tube defects, Type 1 diabetes). ...
Purpose
The purpose of this study was to generate a theory grounded in data explaining caregivers' understanding of their child's language disorder and the perceived role of speech-language pathologists in facilitating this knowledge.
Method
This study employed grounded theory as a conceptual framework. Qualitative data were generated based on semistructured interviews conducted with 12 mothers of children who had received speech-language pathology services.
Results
The following themes emerged from the data analysis: (a) Many mothers reported receiving confusing or irrelevant diagnostic terms for language disorder, (b) mothers of children with language disorders were distressed about their children's language problems, (c) mothers did not always trust or understand their children's speech-language pathologist, and (d) mothers were satisfied with the interventions their child had been receiving. Mothers described their children's language disorder using a total of 23 labels, most of which were not useful for accessing meaningful information about the nature of their child's communication problem. Generally, mothers reported they did not receive language-related diagnostic labels from speech-language pathologists for their child's language disorder.
Conclusions
Two theories were generated from the results: (a) Lack of information provided to mothers about their child's language disorder causes mothers psychological harm that appears to be long lasting. (b) Difficulties in successfully relaying information about language disorders to parents result in negative perceptions of speech-language pathology. Implications and future directions are discussed.
Supplemental Material
https://doi.org/10.23641/asha.12177390
... strategies(15). The emotional response that is reflected in the grieving process, has its ultimate goal is an adaptive response. Adaptive responses can be interpreted as successful adaptation of individual solving grief experienced that can be caused due to chronic illness(16), in this case is DM. ...
p class="Normal1" align="center"> Abstract
Diabetes Mellitus (DM) is a chronic condition which requires various kinds of lifetime treatment which cause grief. Grief has stages which can be passed though normally with the attainment of acceptance stage. Acceptance attainment renders a description maintaining that grief in its process is undergone normally through uncomplicated grief reaction and emotional responsiveness. A diabetics who manages to attain the acceptance stage will have a better glycemic control, while a diabetics with a low acceptance stage may experience an ineffective coping, improper self-treatment, and distress increase, all of which end up in a bad glycemic control which causes physical complications. This suggests that a description of s’ acceptance stage is important to identify. Accordingly, the aim of this research is to identify and analyze the description of diabetics’ acceptance of DM diagnoses. The method utilized is descriptive-observational, the data collected using the ‘Acceptance of Disease and Impairments Questionnaire’ (ADIQ). The analysis employed in this research is a descriptive analysis. The sampling technique used is consecutive sampling. The research result shows that, based on the diagram of ADIQ administered on 20 s, there are 30% found to be in the stage of acceptance, while there exist 70% to be in the stage of not yet attaining acceptance, which comprises denial (20%), resistance (10%), and sorrow (40%). Failure in attaining the acceptance stage is caused by the s’ still being in the states of denial, resistance, and sorrow. Based on the research result, it can be concluded that the s dominantly stay at the stage of not yet attaining acceptance. The diabetics who have attained acceptance may still be exposed to the risk of undergoing a maladaptive response which may trigger depression, anxiety, worsened physical health, self-treatment discontinuation, powerlessness, low self-esteem, social isolation, even suicidal drive. This is all caused by grief which constitutes a fluctuate condition where every diabetes can contribute to describing his or her condition at every stage.
Keywords : stages of grief, acceptance, denial, resistance, sorrow</em
... In the healthcare arena, the experience of joy has recently been identified as an important path to nurture (Balik, 2018;Perlo et al., 2017). The literature does not contain the same rigor of interest in sorrow, and more frequently, the pervasive exploration of phenomena such as sadness, grief, loss, and chronic sorrow is constructed and reviewed (Eakes, Burke, & Hainsworth, 1998;Parse, 1996). In searching to glimpse at understanding joy-sorrow, the author here explores selected current literature and research against a backdrop of the importance in utilizing a nursing theoretical perspective within nursing perspectives. ...
This article focuses on the substance of centering on a nursing disciplinary theoretical approach accomplished through a brief review of the phenomena of joy-sorrow from a research and practice perspective. When practice is designed from a theoretical conceptual system, it takes form and provides tangible benefits through the creative conceptualizations and connectedness that arise to influence persons who seek healthcare. Although the article espouses a humanbecoming framework, the take-away is that a nursing disciplinary approach promotes congruence among theory, research, practice, and education, thereby advancing the discipline’s meaning and contributions.
... Hasil penelitian ini juga sesuai dengan teori Berduka Kronis, metode penanganan eksternal merupakan faktor sosial yang mampu membantu seseorang yang mengalami kesedihan kronis untuk meningkatkan kenyamanan mereka. Bantuan eksternal seperti dukungan sosial dapat memberikan kenyamanan bagi seseorang yang mengalami berduka kronis yang ditunjukkan melalui empati, bimbingan, dan kepedulian (Eakes, Burke, & Hainsworth, 1998). ...
Introduction. One problem that often escapes attention is when the elderly experience a loss of spouse. This problem can cause psychological disturbance and if not done good handling will also affect the physical elderly. Bali is an area of Indonesia that has a distinctive culture associated residence called Pakurenan. This study analyzes the role of family social support and the resilience of elderly who suffer from chronic sorrow due to lost the partner in Pakurenan culture and the association between them. Methods. This cross-sectional study was conducted with 255 elderly in a simple random sample from a subdistrict in Bali in Indonesia. The data were collected from elderly who gave their informed consent to participate using a personal information form, the Perceived Social Support from Family (PSS-Fa) Scale and The Resilience Scale (RS). Data were assessed by descriptive statistics and Spearman's rho analyses, using SPSS software. Results. The mean age of the elderly in the study was 70.38 years (±5.159 years); 69% of the elderly were female, and 67.8% had low education level. The results indicated that there was a significant positive correlation between the family social support and the resilience (rs = .993; p < .05). Conclusion. This study identified a significant correlation between family social support and the resilience of elderly who suffer from chronic sorrow due to lost the partner in Pakurenan culture. This indicates that the family's social support in Pakurenan culture has a positive impact in increasing resilience in the elderly.
... In terms of parents' personal adjustment, many studies have reported that mothers of children with developmental disabilities have higher levels of stress (Herring et al., 2006) and poorer psychological well-being than other mothers (Barlow, Cullen-Powell, & Cheshire, 2006;Eisenhower, Baker, & Blacher, 2005). Parents often experience grief when they learn that their child has a disability and the process of adapting to disability can be prolonged in nature (Eakes, Burke, & Hainsworth, 1998;Rentinck, Ketelaar, Jongmans, & Gorter, 2007). Significantly, a bidirectional relationship has been found between parenting stress and child behaviour problems: high parenting stress contributing to a worsening in child behaviour problems over time, and child behaviour problems exacerbating parental stress (Neece, Green, & Baker, 2012;Woodman et al., 2015). ...
Background:
Children with a developmental disability are three to four times more likely than their typically developing peers of developing significant emotional and behavioural problems. There is strong evidence to suggest that individual biological and psychological factors interact with family functioning to precipitate and perpetuate these problems.
Aims:
This study examined the psychometric properties of a brief measure, the Parent and Family Adjustment Scales (PAFAS) for use with parents of children with a developmental disability.
Methods:
A sample of 914 parents of children (M=6.27years) with a developmental disability participated in the study. Disabilities included Autism Spectrum Disorder and Intellectual Disability RESULTS: A confirmatory factor analysis supported a 16-item, four factor model of PAFAS Parenting, and an 11-item, three factor model of PAFAS Family Adjustment. The Parenting Scale measures parental consistency, coercive practices, use of encouragement and the quality of parent-child relationship. The Family Adjustment Scale measures parental emotional adjustment and partner and family support in parenting.
Conclusions:
The current study indicated that the PAFAS demonstrates promise as a brief measure of multiple domains of family functioning important for families who have a child with a developmental disability.
... However, this recognition does not necessarily equate with preparedness. Indeed, this realization may be associated with such a burden to parents that some authors have described the potential for the draining and debilitating experience of "chronic sorrow" [10]. ...
This paper reviews the theoretical and empirical literature on risk and resilience factors impacting on parental bereavement outcomes following the death of a child with a life-limiting condition. Over the past few decades, bereavement research has focussed primarily on a risk-based approach. In light of advances in the literature on resilience, the authors propose a Risk and Resilience Model of Parental Bereavement, thus endeavouring to give more holistic consideration to a range of potential influences on parental bereavement outcomes. The literature will be reviewed with regard to the role of: (i) loss-oriented stressors (e.g., circumstances surrounding the death and multiple losses); (ii) inter-personal factors (e.g., marital factors, social support, and religious practices); (iii) intra-personal factors (e.g., neuroticism, trait optimism, psychological flexibility, attachment style, and gender); and (iv) coping and appraisal, on parental bereavement outcomes. Challenges facing this area of research are discussed, and research and clinical implications considered.
... Dr Koa Whittingham, a registered clinical and developmental psychologist and investigator on this project, is responsible for developing the parental mental health and parenting support component of the intervention manuals, for training all of the therapists in parental mental health and parenting support and for providing ongoing mentorship and advice to therapists as needed throughout the trial. The parental mental health and parenting support components will be developed grounded in three key theoretical frames: the emotional availability literature, 41 the grief and loss literature including chronic sorrow theory 42 and Acceptance and Commitment. 43 Training will focus on enabling therapists to better support parental grief and to recognise and support responsive parenting. ...
Objectives
Congenital hemiplegia is the most common form of cerebral palsy (CP). Children with unilateral CP show signs of upper limb asymmetry by 8 months corrected age (ca) but are frequently not referred to therapy until after 12 months ca. This study compares the efficacy of infant-friendly modified constraint-induced movement therapy (Baby mCIMT) to infant friendly bimanual therapy (Baby BIM) on upper limb, cognitive and neuroplasticity outcomes in a multisite randomised comparison trial.
Methods and analysis
150 infants (75 in each group), aged between 3 and 6 months ca, with asymmetric brain injury and clinical signs of upper extremity asymmetry will be recruited. Children will be randomised centrally to receive equal doses of either Baby mCIMT or Baby BIM. Baby mCIMT comprises restraint of the unimpaired hand using a simple restraint (eg, glove, sock), combined with intensive parent implemented practice focusing on active use of the impaired hand in a play-based context. In contrast, Baby BIM promotes active play requiring both hands in a play-based context. Both interventions will be delivered by parents at home with monthly home visits and interim telecommunication support by study therapists. Assessments will be conducted at study entry; at 6, 12 months ca immediately postintervention (primary outcome) and 24 months ca (retention). The primary outcome will be the Mini-Assisting Hand Assessment. Secondary outcomes include the Bayley Scale for Infant and Toddler Development (cognitive and motor domains) and the Hand Assessment of Infants. A subset of children will undertake MRI scans at 24 months ca to evaluate brain lesion severity and brain (re)organisation after intervention.
Ethics and dissemination
Full ethical approvals for this study have been obtained from the relevant sites. The findings will be disseminated in peer-reviewed publications.
Trial registration number
Australian and New Zealand Clinical Trials Registry: ACTRN12615000180516, Pre results.
Mothering a child with disability increases caregiving responsibilities considerably, making the mother assume the role of the nurse, the therapist, and the educator. Uninterrupted care work, societal surveillance and prevalent stigma severely interfere with the mental, physical, and existential well-being of such mothers. Through a thematic analysis of select contemporary Bollywood films, this article maps the trajectories of care and examines the alternative mothering strategies adopted by mothers of children with disabilities to take care of their children and themselves. A critical examination of these on-screen mothers provides an insight into the shifting discourses of mothering practices in India.
Childhood loss creates environmental challenges that disrupt the integrity of body-mind-spirit, having profound lifelong effects on both health outcomes and life satisfaction. The author in this report describes a middle-range theory of healing childhood loss, which can be used to guide practice and research. Theoretical influences are Levine’s conservation model of nursing, the theory of chronic sorrow, and the adverse childhood experiences pyramid. Strategies to support healing of childhood loss are particularly needed and timely during this worldwide COVID-19 pandemic, with prolonged disruption of normal childhood activities and concern about a possible increased incidence of adverse childhood experiences.
Purpose
To investigate and report on the quality of life (QoL) issues experienced by caregivers of individuals with childhood glaucoma.
Design
Exploratory qualitative study
Participants
Thirty-five caregivers of individuals with childhood glaucoma (defined as disease onset <18 years) recruited from the Australian and New Zealand Registry of Advanced Glaucoma.
Methods
A qualitative research methodology (interpretive phenomenology) was applied. Data were collected through semi-structured in-depth interviews. NVivo-12 software (QSR International Pty Ltd) was used to inductively analyze, code, and organize data into QoL themes.
Main Outcome Measures
Quality of life themes and their sub-themes.
Results
The mean caregiver age was 50.2 ± 13.6 years and 27/35 (77%) were mothers of an individual with childhood glaucoma. A total of six QoL themes were identified. Coping strategies and emotional well-being were the most prominent themes. Caregivers frequently adopted problem-focused adaptive coping strategies including partner and/or peer support and normalization. A caregivers’ psychosocial well-being was often impacted by feelings of guilt and regret regarding their child’s delayed diagnosis, fear and anxiety related to medical and social support, and loss of control as their child developed medical autonomy. The effect of family planning from the perspective of the caregiver formed a novel QoL theme and was associated with normalization and parental confidence in management of the condition.
Conclusion
Childhood glaucoma poses a substantial threat to a caregivers’ psychosocial well-being. Strategies which promote normalization, peer support, psychotherapeutic intervention and genetic counseling may be indicated and indeed critical to the caregiver as they adapt to supporting their child with glaucoma.
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.
Background:
Gestational diabetes is a disease with complex management that requires multidisciplinary collaboration. To achieve treatment goals, in addition to using medications and paying attention to exercise and diet, it is also important to take into account the mental health and psychosocial aspects of diabetes management. This study aimed to highlight these challenges associated with gestational diabetes.
Method:
This qualitative systematic review involved a search of the following databases: CINAHL, EMBASE, MEDLINE, and PsycINFO. Title, abstract, and full-text screening was done using Covidence software, and quality assessment of the included papers was conducted using the Critical Appraisal Skills Programme Checklist. Enhancing transparency in reporting the synthesis of the qualitative research statement (ENTREQ) was used in the design of this paper. Data synthesis was done using meta-aggregation method.
Results:
Out of the 2440 articles searched, 24 were qualitatively analyzed. The CASP score of the included papers was optimal. The 514 findings extracted from the 24 studies were aggregated into five broad conceptual categories: psychological challenges, socio-cultural challenges, information-communication challenges, challenges associated with a lifestyle change, and challenges related to health care.
Conclusion:
Recognizing the psychosocial challenges associated with gestational diabetes and developing support packages tailored to psychosocial needs can help improve the management of these patients.
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
Deaths during the perinatal period remain a big challenge in Africa, with 38 deaths per 1000 pregnancies in Uganda. The consequences of these deaths can be detrimental to the women; some ending up with postpartum depression. We examined the association between perinatal death and postpartum depression among women in Lira district, Northern Uganda.
Methods
We conducted a community-based cross-sectional study of 1,789 women. Trained research assistants screened women for postpartum depressive symptoms on day 50 postpartum using the Edinburgh postpartum depression scale (EPDS). Socio-demographic, economic, birth and survival status of the neonate were collected during pregnancy and within one week postpartum. We used generalized estimating equation for the Poisson family with a log link using Stata to estimate the prevalence ratio of the association between postpartum depressive symptoms (EPDS scores ≥14) and perinatal death. Mothers who lost their babies between 7–49 days postpartum were excluded.
Results
Of the 1,789 participants symptomatically screened for postpartum depression, 377 (21.1%) [95% confidence interval (95%CI): 17.2%, 23.0%] had probable depressive symptoms. The prevalence of postpartum depressive symptoms among the 77 women who had experienced perinatal death (37 stillbirths and 40 early neonatal deaths (≤7 days of life)) was 62.3% [95% CI: 50.8%, 72.6%] compared to 19.2% [95% CI: 17.4%, 21.2%], among 1,712 with live infants at day 50 postpartum. Women who had experienced a perinatal death were three times as likely to have postpartum depressive symptoms as those who had a live birth [adjusted prevalence ratio 3.45 (95% CI: 2.67, 4.48)].
Conclusions
The prevalence of postpartum depressive symptoms, assessed by EPDS, was high among women who had had a perinatal death in Northern Uganda. Women experiencing a perinatal death need to be screened for postpartum depressive symptoms in order to intervene and reduce associated morbidity.
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.
Presently, there is a dearth of theoretical models to guide research on the population of former dementia caregivers. The purpose of this article is to describe the development of the Post-caregiving Health Model and its potential for generating a more nuanced understanding of the health of family caregivers following the death of a care recipient with dementia. The model highlights the impact of personal and environmental characteristics, appraisal, coping, and emotion on long-term health outcomes in this population and offers a viable framework for studying long-term health outcomes among caregivers following the care recipient's death.
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.
Background:
Caregivers of children with cerebral palsy (CP) face unique demands and challenges, with potential negative impact on psychological wellbeing and consequences for both caregiver and child. Timely support could improve parental wellbeing.
Aim:
To evaluate the effectiveness of interventions aimed at improving the psychological wellbeing of caregivers of children with CP.
Methods and procedures:
Systematic review and meta-analysis of randomised controlled trials of interventions to improve the psychological well-being of caregivers of children with cerebral palsy. Databases (including MEDLINE, EMBASE, PsycINFO, Cochrane) were searched for relevant English language publications between January 1990 and December 2017. Risk of bias was assessed including randomization, allocation concealment, incomplete outcome data and selective outcome reporting.
Outcome and results:
We included 13 studies (1293 participants, 1/3 with CP). Six studies investigated a positive parenting intervention; the other seven studies covered a range of other interventions. Meta-analysis of 7 studies (662 participants) showed that interventions significantly improved parental wellbeing (standardised mean difference -0.61, 95% CI -0.92 to -0.30, z = 3.84, p = 0.0001).
Conclusions and implications:
Limitations include small sample sizes and heterogeneity in study design; however, our results indicate that interventions can improve the wellbeing of parents of children with CP and should be made available.
Child loss is the most traumatic loss a parent can experience, increasing their risk of negative outcomes such as complicated grief. Unexpected loss in the unfamiliar environment of the Emergency Department (ED) significantly increases this risk. Despite this knowledge, research on child loss in the context of the ED is scarce. An interpretive description qualitative research study was performed with eight parents (five mothers and three fathers) to examine their experience of unexpectedly losing a child in the pediatric ED. Data collection included interviews, demographic questionnaires, and field notes. Data were analyzed using a constant comparative method and revealed four main themes: “grief as waves,” “being the good parent,” “coping through the waves of grief,” and “the new normal.” Improving understanding around child loss and implementing stronger support for parents, through communication, advocacy, and physical presence while in the ED, could greatly reduce parents’ risk of negative outcomes.
In England, legislation introduced in 2014 to reform support for children and young people with special educational needs and disability (SEND) from birth to 25 years of age has been described as the biggest change in SEND for 30 years. Support now focuses on improved outcomes for young people with SEND, and aims to be more aspirational and person‐centred, with the child and family ‘at the heart of the process’. This could be viewed as timely for young people with Duchenne muscular dystrophy (DMD), a genetic life‐limiting impairment, who, due to improved care and interventions, are now living longer. The aim of this small‐scale qualitative study is to explore whether young people with DMD, their parents and schools feel that these reforms are able to support young people with life‐limiting impairments to get the lives they want. Findings suggest that parents and children with DMD welcome the new person‐centred philosophy, but are still forced to fight for funding and support in a system of reduced resources. Austerity and its role in the narrative of neo‐liberalism is also explored.
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.
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.
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.
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)
This descriptive study uses an existential framework for analyzing the grief process. The existential component of grief is presented as centered upon the effort to bring meaning to loss arid the existence of death in the world. The chronically ill and disabled are introduced into the study, and serve to demonstrate the existential struggle to create a meaningful life after loss. Their efforts are impeded by our death-avoiding social reality which reacts negatively to their physical conditions.
Research on the phenomenon of chronic sorrow has been limited to samples of parents of children with disabilities. The Nursing Consortium for Research on Chronic Sorrow was formed to study this concept in individuals with chronic illness and their family caregivers across the life span. Although no research on this concept has focused on a life-span approach, the level and quantity of related research indicate that a qualitative method is most appropriate. A study of parents of children with spina bifida provided a usable instrument, the Chronic Sorrow Questionnaire. The purpose of additional study is to determine when chronic sorrow occurs and what characteristics it displays in a variety of populations across the life span, how groups suffering from chronic sorrow compare with parents of children with disabilities, whether chronic sorrow is an inherent phenomenon in chronic illness situations, and how the major subconcepts of chronic sorrow theory are linked.
Cognitive therapies have continued to develop along both quantitative and qualitative lines. One important qualitative development has been the emergence of a constructivist trend, which has suggested both conceptual realignments and new strategic emphases for theorists and practitioners of cognitive therapy has been an important and qualitative development. This paper reviews several informative contrasts between traditional cognitive therapies and their constructivist alternatives, both at the level of epistemology and at the level of clinical practice.
Describes the experience of mothers of children with severe physical or mental disabilities and suggests that people with visible disabilities and those who care for them are expected to mourn because the disability is viewed by the rest of society as a tragedy analagous to death. The process of chronic or recurrent grief is complicated by the expectations of society in 2 ways: (1) by requiring mourning and (2) by requiring the suppression or denial of mourning. The lack of cultural supports for mourning is noted. (PsycINFO Database Record (c) 2012 APA, all rights reserved)
Typescript. Thesis (M.S.)--University of Mary, 1994.
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.
This article explores the presence of chronic sorrow in families of chronically ill children and applies role theory concepts in the understanding of this phenomenon. Research findings in the area of chronic sorrow, family adaptation, and role theory are used to formulate propositions specific to the application of role theory in the study of chronic sorrow. The clinical and research applicability for nurses working with families of chronically disabled children are discussed to assist in providing quality family-nursing care.
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.
A qualitative study is presented following the hybrid model of concept development to examine the emotions present in mothers who care for their chronically ill children at home. In particular the study attempts to examine the presence or nonpresence of chronic sorrow in three mothers through the use of observation and intensive interview techniques and by following the Schatzman and Strauss (1973) method of field research. The population for this study varied in diagnosis, sex, age, prognosis, and family structure. The commonalities included an uncertain future, a significantly changed life-style as a result of the child's illness, and the presence of nursing care in the home. The emotion called chronic sorrow, introduced in 1962 by Olshansky, has had limited exposure in the literature. The concept was originally intended for examinations of parents of severely mentally retarded children. Recently it has been examined in varied populations. Although many different reactions have been presented in the literature regarding the emotions of parents of chronically ill children, chronic sorrow has not been one of them. The examination of this emotion has been disease specific. The presence of this emotion in this population has implications for nurses working in all care settings.
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.
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.
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.
The theory of uncertainty in illness has its strongest support among subjects who are experiencing the acute phase of illness or are in a downward illness trajectory (mishel, 1988a). The theory has not addressed the experience of living with continual, constant uncertainty in either a chronic illness or in an illness with a treatable acute phase and possible eventual recurrence. Since uncertainty characterizes many, most prevalent, long-term illness conditions, there is a need to reconceptualize the theory of uncertainty to include the experience of living with continual uncertainty. A close examination of the theoretical statements and the empirical data reported by Mishel resulted in the identification of areas of the theory that could be expanded and reconceptualized. The reconceptualization effort was primarily fueled by questions about the outcome portion of the uncertainty theory. To provide a contest for the expansion and reconceptualization of uncertainty, applicable parts of the theory are summarized below.
It is important to recognize that parents of disabled, premature, or chronically ill children may never fully resolve the grief associated with their child's special condition. Nurses need to identify the emotional responses of parents and assist them in coping with their special needs and concerns, thus helping to prevent major adjustment or psychological problems of both the child and parents.
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.
Among professionals who work with disabled children and their families, the need has arisen for better articulation of the concept of chronic sorrow, a bereavement process parents experience in response to life with a disabled child. This article presents information and concepts about the nature of chronic sorrow that permit clarification and understanding of the meaning of what is otherwise often confusing parent behavior. Implications for the professional in assisting the parent's movement through the bereavement process will be discussed.
The purpose of this grounded theory study was to examine the parenting process when a child has developmental delay including mental retardation (DD/MR). The sample consisted of parents (29 mothers, 13 fathers) of 31 children with DD/MR. A semistructured interview guide was used to collect data during 1- to 1.5-hour interviews. The basic social process of Transformed Parenting emerged from the data. Transformed Parenting consists of an initial entrance process and a subsequent ongoing performance process. The entrance process encompasses receiving the child's diagnosis and responding to the child's diagnosis. The performance process consists of three areas: reality construing processes, contextual processes, and operating processes. At the core of the reality construing process is construing reality loops, which describes the ongoing process of interpreting the child's problems.
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.
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.
This study was designed to examine chronic sorrow in spouse caregivers of individuals with multiple sclerosis. Chronic sorrow was defined as a pervasive sadness that is permanent, periodic, and progressive in nature. The sample comprised 10 participants: 5 males and 5 females. Data were collected through audiotaped, face-to-face interviews using the Burke/NCRCS Chronic Sorrow Questionnaire (Caregiver Version). The audiotapes were transcribed, and then analyzed by the researcher. Eighty percent of the caregivers were found to experience chronic sorrow. Milestones or events which caused the sorrow to recur were major themes. The participants also identified what was helpful and not helpful in coping with these feelings, gave practical advice for similar individuals, and offered suggestions for nurses and other caregivers.
Chronic sorrow is the grief experienced from continual loss during the trajectory of an illness or disability. The presence and nature of chronic sorrow were determined in a sample of six persons with Parkinson's disease and four of their spouse caregivers using the Burke NCRCS Questionnaire. Four of the afflicted individuals and two of the spouse caregivers reported symptoms of chronic sorrow that for half of them were more intense than at the time of diagnosis. Respondents used extensive problem-solving and emotive coping strategies to handle their sorrow. Most of the respondents described themselves within the context of the illness and the care required. Losses triggering their sorrow included loss of future plans, restricted social life, and inability to travel and participate in hobbies. Support from others was restricted mainly to physicians at the time of diagnosis and close family. Supportive nursing interventions for their grief are indicated.
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