The effectiveness of mutual support group intervention for Chinese families of people with schizophrenia: A randomised controlled trial with 24-month follow-up

Background

Positive effects on the relapse from illness and compliance with medication by patients have been observed from family intervention for schizophrenia. However, little attention has been paid to the effects on family members, particularly those in non-Western countries. Inconsistent and inconclusive findings were found on the family-related outcomes and longer-term effects of family intervention.

Objective

This study tested the effects of a nine-month family-led mutual support group for Chinese people with schizophrenia, compared with a psycho-education group and standard psychiatric care over a 24-month follow-up.

Design

A randomised controlled trial [registered with ClinicalTrials.gov (NCT00940394)] with repeated-measures, three-group design.

Settings

Two regional psychiatric outpatient clinics in Hong Kong.

Participants

One hundred and thirty-five Chinese family caregivers and their patients with schizophrenia were randomly recruited, of whom 45 family dyads received family-led mutual support group, a psycho-education group, or standard care.

Methods

After completing the pre-test questionnaire, the participants were randomly assigned into one of the three study groups. The mutual support and psycho-education groups comprised 14 two-hour group sessions, with patients participating in at least 5 sessions. Those in standard care (and two treatment groups) received routine psychiatric care. Multiple patient and family-related psychosocial outcomes were compared at recruitment and at one week, 12 months, and 24 months following interventions.

Results

One hundred and twenty-six of 135 family dyads completed the three post-tests and 43 (95.6%) attended at least nine group sessions (60%) of the mutual support group programme. Mean ages of the family caregivers in the study ranged from 41.2 (SD = 7.0) to 42.7 (SD = 7.6) years. About two-thirds of the caregivers were male and patients’ parent or spouse. The results of multivariate analysis of variance followed by Helmert contrasts tests indicated that the participants in the mutual support group indicated significantly greater improvement in family and patient functioning [F(2, 132) = 5.40, p = 0.005 and F(2, 132) = 6.88, p = 0.001, respectively] and social support for families [F(2, 131) = 5.01, p = 0.005], and in reducing patients’ symptom severity [F(2, 132) = 4.65, p = 0.01] and length of re-hospitalisations [F(2, 132) = 4.78, p = 0.01] at 12- and 24-month follow-ups.

Conclusions

Family-led mutual support group for schizophrenia produces longer-term benefits to both the patients’ and families’ functioning and relapse prevention for patients, compared with psycho-education and standard care. This group programme can be an effective family intervention for Chinese people with schizophrenia.     

Quality of life discordance between terminal cancer patients and family caregivers: a multicenter study

Background

Research studies on quality of life (QOL) discordance between cancer patients and family caregivers are limited, and the results are inconsistent. The objective of this study was to examine QOL discordance between patients and family caregivers in a hospice setting and to identify factors associated with the discordance.

Methods

We enrolled 178 patient-family caregiver pairs from six tertiary hospital hospice palliative care units in South Korea in this cross-sectional study. To establish groupings based on patient and family caregiver QOL levels, we measured the QOL of patient and family caregiver pairs using the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire Core 15 for Palliative Care and the Caregiver QOL Index-Cancer, respectively. Pairs were categorized into the following three groups: both good QOL pairs, only poor patient QOL, and only poor family caregiver QOL. Factors associated with only poor patient or only poor family caregiver QOL were compared to both good QOL pairs. A stepwise multivariate regression model was used to identify relevant factors.

Results

The QOL of family caregivers did not correlate significantly (P?=?0.227) with QOL in terminally ill cancer patients. As well, poor emotional function in patients was the only significant factor associated with the only poor patient QOL group [adjusted odds ratio (aOR), 4.1; 95 % confidence interval (CI), 1.5–11.5]. However, emotionally distressed family caregivers (aOR, 10.2; 95 % CI, 2.8–37.5), family caregivers who professed a religion (aOR, 4.1; 95 % CI, 1.5–11.3), and family caregivers with low social support (aOR, 3.9; 95 % CI, 1.5–10.6) were independent predictors for the only poor family caregiver QOL group.

Conclusions

Assessing the respective emotional status of both the patient and family caregiver is needed in hospice care to reduce the gap in QOL between the two groups. Further, more attention should be paid to the lack of social support for family caregivers.

     

Unmet support needs of early-onset dementia family caregivers: a mixed-design study

Background

Though advances in knowledge and diagnostics make it possible today to identify persons with early-onset dementia or a related cognitive disorder much sooner, little is known about the support needs of the family caregivers of these persons. The aim of this study was to document the unmet support needs of this specific group of caregivers. This knowledge is essential to open avenues for the development of innovative interventions and professional services tailored to their specific needs.

Methods

This study was conducted using a mixed research design. Participants were 32 family caregivers in their 50s recruited through memory clinics and Alzheimer Societies in Quebec (Canada). The Family Caregivers Support Agreement (FCSA) tool, based on a partnership approach between caregiver and assessor, was used to collect data in the course of a semi-structured interview, combined with open-ended questions.

Results

The unmet support needs reported by nearly 70% of the caregivers were primarily of a psycho-educational nature. Caregivers wished primarily: (1) to receive more information on available help and financial resources; (2) to have their relatives feel valued as persons and to offer them stimulating activities adjusted to their residual abilities; (3) to reduce stress stemming from their caregiver role assumed at an early age and to have the chance to enjoy more time for themselves; and (4) to receive help at the right time and for the help to be tailored to their situation of caregiver of a young person.

Conclusions

Results show numerous unmet support needs, including some specific to this group of family caregivers. Use of the FCSA tool allowed accurately assessing the needs that emerged from mutual exchanges. Avenues for professional innovative interventions are proposed.

     

Family involvement in the care of a hospitalised child: a questionnaire survey of Mozambican family caregivers

Background

Previous research from Western and Eastern countries shows that parents of a sick child want to be involved and to participate during a child's hospitalisation. However, the stay can be stressful and parents have their own needs. Conditions and cultural constructs are different among countries.No published study on parents’ or close family caregivers’ involvement and participation during paediatric hospitalization has been found for an African population.

Objective

The aim of this study was to articulate Mozambican family caregivers’ expressed needs, expectations and experiences of hospital care and hospital staff.

Setting and participants

The study was conducted at the Paediatric Clinic at the Central Hospital in Maputo, Mozambique. A sample of 100 family caregivers was chosen, representing one third of all family caregivers of hospitalised children over a one-month period.

Design and method

A cross-sectional study was conducted, using a questionnaire.

Results

Participating Mozambican family caregivers have, for the most part, a low level of education and reduced socio-economic conditions. This made the admission to and the time in hospital hard to cope with, and difficult for them to understand. The study showed that they were badly informed of anything to do with hospitalisation. They needed explanation and support to make the hospital situation less intimidating.Hospital staff's behaviour was to some extent characterised by attentiveness, kindness, and sympathy, but it was also shown that the family caregivers had experiences of communication difficulties and of being neglected.

Conclusion

The result, in this Sub-Saharan African context, shows that parents or family caregivers have a desire to be involved in the care of their hospitalised child, much the same as has been shown in studies in Western and Eastern countries. But Mozambican family caregivers’ expectations, needs and experiences are rooted not only in poverty, their household situation and the health system, but also in the hierarchical construct of their culture. All these factors influence their communication and relationships. Hospital staff is perceived to be superior. To empower the family caregivers to take part in the caring process in a cultural sensitive way is therefore of great importance.     

“I see myself as part of the team” – family caregivers’ contribution to safety in advanced home care

Background

The use of medical technology and the various contributing and interdepending human factors in home care have implications for patient safety. Although family caregivers are often involved in the provision of advanced home care, there is little research on their contribution to safety. The study aims to explore family caregivers in Home Mechanical Ventilation (HMV) safety experiences and how safety is perceived by them in this context. Furthermore, it seeks to understand how family caregivers contribute to the patients’ and their own safety in HMV and what kind of support they expect from their health care team.

Methods

An explorative, qualitative study was applied using elements from grounded theory methodology. Data were collected through individual interviews with 15 family caregivers to patients receiving HMV in two regions in Germany. The audiotaped interviews were then subject to thematic analysis.

Results

The findings shows that family caregivers contribute to safety in HMV by trying to foster mutual information sharing about the patient and his/her situation, coordinating informally health care services and undertaking compensation of shortcomings in HMV.

Conclusion

Consequently, family caregivers take on considerable responsibility for patient safety in advanced home care by being actively and constantly committed to safety work.Nurses working in this setting should be clinically and technically skilled and focus on building partnership relations with family caregivers. This especially encompasses negotiation about their role in care and patient safety. Support and education should be offered if needed. Only skilled nurses, who can provide safe care and who can handle critical situations should be appointed to HMV. They should also serve as professional care coordinators and provide educational interventions to strengthen family caregivers’ competence.

     

What support can community mental health nurses deliver to carers of people diagnosed with schizophrenia? Findings from a review of the literature

Objectives

The purpose of this review was to determine the nature of support that mental health nurses could deliver to carers of people diagnosed with schizophrenia. The aim was to identify approaches that could be delivered within community practice to reduce burden and increase knowledge, mental health and coping.

Questions addressed

What effect did support have on carer burden and other needs? What were the key elements of effective support? What effective supports could mental health nurses deliver within practice?

Design

This review covers the international scientific literature published between 1980 and 2008.

Data sources

Searches were made of electronic databases relevant to nursing. All papers, published in English, were assessed. Hand searches of review papers and references were also carried out. Sixty-eight studies were included.

Study appraisal and synthesis

Only comparative studies providing a quantitative assessment of carer outcomes were included. Findings were synthesised in narrative format and grouped by intervention type.

Results

Of the 68 emerging studies, 12 (18%) directly included nurses in delivering the intervention and 16 (24%) included nurses as part of a multidisciplinary team. There is fairly robust evidence that education improves carer knowledge of schizophrenia. There is, however, little evidence that it addresses more substantive areas such as burden, coping or mental health. Supportive family education moves beyond information giving by developing coping. As might be expected these approaches can reduce burden. More intensive programmes such as behavioural family therapy aim to address stressful relationships which commonly occur in families of people diagnosed with schizophrenia. These programmes are particularly effective in reducing burden and can also improve mental health. Community support such as intensive outreach is also effective in reducing burden. Finally, there is some evidence that mutual support groups reduce burden and improve coping.

Conclusions

Research on effective support for carers of people diagnosed with schizophrenia is emerging. Although findings were mixed, there was some evidence supporting a range of approaches that mental health nurses could offer to carers. There is, however, still a need for pragmatic studies to determine the extent that these approaches can be delivered within nursing practice.     

Further validation of the Chinese version of the Level of Expressed Emotion Scale for research and clinical use

Background

Expressed emotion is a construct that has been used for the past three decades to describe family members’ criticism, hostility and emotional involvement with a mentally ill relative within the context of family interactions and caregiving. In Western countries this construct is used as an outcome measure of interventions for families of people with schizophrenia or other psychotic disorders, but the use of this construct in Chinese populations is somewhat limited.

Objective

To test the reliability and validity of a refined Chinese version of the 52-item Level of Expressed Emotion Scale (LEE).

Methods

A convenience sample of 405 outpatients with psychotic disorders in Hong Kong and one of their family caregivers were recruited. Patients were asked to complete a set of questionnaires twice over a 6-month period, including the Chinese version of the LEE, the Specific Level of Functioning scale and the Brief Psychiatric Rating Scale; while their caregivers completed the Family Assessment Device twice and a demographic data sheet at recruitment. This study was aimed at establishing the internal consistency, reproducibility, responsiveness, and construct validity of the LEE.

Results

Results indicated that the refined 50-item Chinese version of the LEE and its subscales demonstrated a high internal consistency and satisfactory correlations with patient and family functioning scores. Principal component analysis revealed the presence of four factors, explaining 70.8% of total variance and indicating high factor loadings as well as item-factor inter-correlations. The Chinese version not only indicated a satisfactory reproducibility in assessing change in patients’ symptom severity and family functioning but also showed an adequate responsiveness to the changes in patients’ symptoms over 6 months, especially for detecting symptom improvement.

Discussion

The findings of the psychometric evaluation of the Chinese version of the LEE established its potential as a research instrument in measuring the level of expressed emotion of family members as perceived by Chinese patients with psychotic disorders. Further testing of its psychometric properties is recommended, using larger samples from diverse socio-economic backgrounds and mental illnesses.     

Treatment of primary immunodeficiency with Kiovig®: a literature review

Introduction

Primary immunodeficiency disorders are associated with increased patient susceptibility to recurrent infections. Since the 1950s, immunoglobulin products have been administered to treat infections in primary immunodeficiency, and patients often require lifelong therapy. The aim of this study is to carry out a literature review of a ready-to-use 10% liquid immunoglobulin preparation, Kiovig® (Baxter, Brussels, Belgium), in the treatment of primary immunodeficiency.

Methods

Studies were identified by searching PubMed, Centre for Reviews and Dissemination databases, Cochrane Database of Systematic Reviews, and EconLit up to January 2010. The clinical literature review focused on studies of the safety, tolerability, and effectiveness of Kiovig. Evidence about cost-effectiveness was derived from economic evaluations. In addition, budget impact analyses were identified that examined the financial impact of adopting Kiovig for the treatment of primary immunodeficiency.

Results

The evidence indicates that Kiovig and other intravenous immunoglobulin products have similar safety and effectiveness. Given that Kiovig and other intravenous immunoglobulin products appear to have similar effectiveness, the pharmacoeconomic value of Kiovig depends on the costs of immunoglobulin treatment, including drug acquisition costs, and pharmacist and nursing time costs. A Belgian study indicated that the price of Kiovig is the main driver of its budget impact on the treatment of primary immunodeficiency.

Conclusion

The current evidence base on the treatment of primary immunodeficiency with Kiovig is limited. Head-to-head comparative studies are called for to investigate the safety, tolerability, effectiveness, and cost-effectiveness of Kiovig versus other immunoglobulin products in the treatment of primary immunodeficiency.

     

Trapped like a butterfly in a spider's web: Experiences of female spousal caregivers in the care of husbands with severe mental illness

Aims and objectives

To explore the experiences of female spousal caregivers in the care of husbands with severe mental illness.

Background

Family involvement in the care of patients with chronic illness is essential to provide a backbone of support for them. However, little is known about how female spousal caregivers are confronted with challenges while taking care of their husbands with severe mental illness.

Design

An exploratory qualitative study.

Methods

Fourteen female spousal caregivers of people with severe mental illness (defined here as schizophrenia, schizoaffective disorders and bipolar affective disorders) were recruited using purposive sampling and were interviewed using a semistructured in‐depth interview method. Data were analysed by conventional content analysis until data saturation was achieved.

Results

Care of a husband with severe mental illness had a disruptive influence on the emotional relationships of the family and resulted in emotional detachment over time. Despite the caregivers’ struggle to protect their families, the lack of supportive resources caused emotional exhaustion. Caregiving tasks interfering with their many other responsibilities, along with being a reference for family matters, led to loss of self. Consequently, they experienced psychological distress because of the transition to a caregiver role without any supportive resources.

Conclusion

Constant caring, without supportive resources, forced them to do various roles and manage other issues within the family. Being unprepared for a caregiving role led to the psychological distress of female spousal caregivers. Therefore, adequate information, education and supportive resources must be provided for spouses to facilitate their transition to caregiving roles.

Relevance to clinical practice

It is necessary to pay close attention to the spousal caregivers’ own mental health problems while they care for their mentally ill husbands. Mental health professionals should adopt a new approach to the prioritisation and planning of policies that support both family caregivers and patients.

     

A randomized controlled trial of a mutual support group for family caregivers of patients with schizophrenia

This randomized controlled trial examined the effectiveness of a 12-session mutual support group conducted over 3-months for Chinese family caregivers of a relative with schizophrenia compared with routine family support services in Hong Kong. Forty-eight family caregivers from two psychiatric outpatient clinics were allocated randomly to an experimental (mutual support and usual outpatient care) group (n = 24) or a control (usual outpatient care only) group (n = 24). Data were collected prior to, 1 week and 3 months after the intervention. Families allocated to the mutual support group experienced decreased levels of family burden and increased family functioning and these changes were significantly greater than those of the controls at both post-intervention time points. The experimental group also showed a significant decrease in the duration of patient re-hospitalization (the total number of days of psychiatric hospitalization) at 3 months compared with the control group. This suggests that the mutual support group provided a more responsive service for patients than standard care. However, there was no significant difference in family service utilization between the two groups. The findings indicate that a mutual support group can provide benefits for family caregivers of people with schizophrenia that go beyond those provided by routine family support.     

The lived ICU experience of nurses, patients and family members: A phenomenological study with Merleau-Pontian perspective

Aim

To describe and understand the lived intensive care unit experience of nurses, patients and family members during critical illness.

Background

There is a paucity of research studies in the literature conducted on the triad of nurses, patients and family members looking at the experience of critical illness and their perspective of each, from the other.

Methodology

A phenomenological approach and Merleau-Ponty's existentials of corporeality, temporality, relationality and spatiality was used for this study. In-depth, open-ended interviews were, conducted and analysed using van Manen's wholistic, selective and detailed line-by-line approach.

Results

Five common themes (a) and three specific themes (b) emerged from the data: (a) family as a, unit, physical care/comfort, physiological care, psychosocial support and transformation; and, (b) advocacy, uncertainty and confidence in the nurse and the healthcare team.

Conclusion

Examining embodied experience of corporeality, temporality, spatiality and relationality, opens new ways for coping amongst patients and their families, as well as care giving possibilities for the, nurses. This study affirms the mutual influence amongst the family, patient and nurses during a critical, illness experience and supports the tenets of family-centred care, which mandates the purposeful, inclusion of the family in all aspects of their loved one's care.     

The impact of sleep on ambulatory blood pressure of female caregivers providing home care in Japan: an observational study

Background

Elderly family caregivers are presumed to be susceptible to having various health problems. However, biomedical indicators of health in these caregivers are rarely examined.

Objective

To examine the effect of sleep quality, measured by hours of sleep and the number of times leaving bed, on various blood pressure parameters in elderly caregivers.

Design

Observational study.

Setting

Northern Japan.

Participants

Seventy-eight female family caregivers.

Methods

Ambulatory blood pressure was monitored at 30–60-min intervals for a 24-h period. An actigraph was used to determine sleep/wake status. Face-to-face interviews were conducted to obtain home care and demographic information, and self-administered questionnaires were used to collect information on activities in a 24-h period.

Results

The mean age of the caregivers was 62.5 ± 9.6 years, and the mean hours of sleep were 7.3. Out of 78 caregivers, 19 were on antihypertensive medication. Of the remaining 59, this study found 45.8% to be hypertensive, with the mean maximum systolic pressure exceeding 180 mmHg. The hours of sleep at night and for the 24-h period were inversely associated with the mean systolic blood pressure. The majority of caregivers on antihypertensive medication also had high blood pressure.

Conclusions

This study suggests the importance of 24-h ambulatory blood pressure monitoring for elderly caregivers, so as to screen for hypertension as well as to monitor the effectiveness of antihypertensive medication.     

The contribution of nurses to incident disclosure: A narrative review

Objectives

To explore (a) how nurses feel about disclosing patient safety incidents to patients, (b) the current contribution that nurses make to the process of disclosing patient safety incidents to patients and (c) the barriers that nurses report as inhibiting their involvement in disclosure.

Design

A systematic search process was used to identify and select all relevant material. Heterogeneity in study design of the included articles prohibited a meta-analysis and findings were therefore synthesised in a narrative review.

Data sources

A range of text words, synonyms and subject headings were developed in conjunction with the York Centre for Reviews and Dissemination and used to undertake a systematic search of electronic databases (MEDLINE; EMBASE; CENTRAL; PsycINFO; Health Management and Information Consortium; CINAHL; ASSIA; Science Citation Index; Social Science Citation Index; Cochrane Database of Systematic Reviews; Database of Abstracts of Reviews of Effects; Health Technology Assessment Database; Health Systems Evidence; PASCAL; LILACS). Retrieval of studies was restricted to those published after 1980. Further data sources were: websites, grey literature, research in progress databases, hand-searching of relevant journals and author contact.

Review methods

The title and abstract of each citation was independently screened by two reviewers and disagreements resolved by consensus or consultation with a third person. Full text articles retrieved were further screened against the inclusion and exclusion criteria then checked by a second reviewer (YB). Relevant data were extracted and findings were synthesised in a narrative empirical synthesis.

Results

The systematic search and selection process identified 15 publications which included 11 unique studies that emerged from a range of locations. Findings suggest that nurses currently support both physicians and patients through incident disclosure, but may be ill-prepared to disclose incidents independently. Barriers to nurse involvement included a lack of opportunities for education and training, and the multiple and sometimes conflicting roles within nursing.

Conclusions

Numerous potential benefits were identified that may result from nurses having a greater contribution to the disclosure process, but the provision of support and training is essential to overcome the reported barriers faced by nurses internationally.     

Burden of Chinese stroke family caregivers: the Hong Kong experience

Tang W-K, Lau CG, Mok V, Ungvari GS, Wong K-S. Burden of Chinese stroke family caregivers: the Hong Kong experience.

Objective

To ascertain the clinical and sociodemographic factors associated with family caregivers' burden in Chinese patients with stroke in Hong Kong.

Design

Cross-sectional design.

Setting

Stroke Clinic.

Participants

Patients (N=123) from a stroke clinic and their family caregivers.

Interventions

Not applicable.

Main Outcome Measures

Predictive factors of family caregivers' burden in Chinese stroke patients in Hong Kong. Caregivers' burden was assessed with the Caregiving Burden Scale (CBS). Patients' and caregivers' sociodemographic data and clinical characteristics were recorded. Physical and psychological conditions were measured and rated with the following instruments: Cumulative Illness Rating Scale, Geriatric Depression Scale (GDS), Barthel Index, Instrumental Activities of Daily Living, Mini-Mental State Examination, Lubben Social Network Scale, Modified Life Event Scale (MLES), Hospital Anxiety and Depression Scale (HADS), and a single question about fatigue.

Results

In the univariate analysis, the CBS score had significant correlations with certain characteristics of caregivers (sex, GDS, HADS, depressive symptoms, fatigue, and MLES) and those of patients' (sex, age, education, GDS). Regression analysis revealed that caregivers' GDS and patients' education were the independent correlates of the CBS.

Conclusions

The severity of depressive symptoms in Chinese stroke caregivers and patients' education are independent factors associated with the caregivers' burden. Further studies evaluating interventions on caregivers' burden should include the assessment and management of mood disorders.     

Economic and social changes among distressed family caregivers of lung cancer patients

Purpose

Although costs of lung cancer care have been documented, economic and social changes among lung cancer patients’ family caregivers have yet to be fully examined. In addition, research has not focused on caregivers with greater need for support services. This study examined various economic and social changes among distressed family caregivers of lung cancer patients during the initial months of cancer care in the USA.

Methods

Lung cancer patients’ primary family caregivers with significant anxiety or depressive symptoms were recruited from three medical centers within 12 weeks of the patient’s new oncology visit. Caregivers (N?=?83) reported demographic and medical information and caregiving burden at baseline. Seventy-four caregivers reported anxiety and depressive symptoms and economic and social changes 3 months later.

Results

Seventy-four percent of distressed caregivers experienced one or more adverse economic or social changes since the patient’s illness. Common changes included caregivers’ disengagement from most social and leisure activities (56 %) and, among employed caregivers (n?=?49), reduced hours of work (45 %). In 18 % of cases, a family member quit work or made another major lifestyle change due to caregiving. Additionally, 28 % of caregivers reported losing the main source of family income, and 18 % reported losing most or all of the family savings. Loss of the main source of family income and disengagement from most social and leisure activities predicted greater caregiver distress.

Conclusions

Findings suggest that distressed caregivers of lung cancer patients experience high rates of adverse economic and social changes that warrant clinical and research attention.     

Psychological distress and quality of life of palliative cancer patients and their caring relatives during home care

Purpose

Palliative patients and their family caregivers were interviewed at the beginning of home care in personal interviews at home in regard to their psychological distress as well as their quality of life.

Methods

Quality of life was collected with the palliative module EORTC QLQ-C15-PAL (patients) and the Short Form-8 Health Survey (caregivers). The psychological distress was assessed using the Hospital Anxiety and Depression Scale, the extent of social support with the Oslo 3-items social support scale. Two multiple regression models were employed to examine factors associated with psychological distress. Data from 106 palliative patients (39.6 % female) and their family caregivers (67.9 % female) were included in the analysis.

Results

Every fourth patient had clinically relevant anxiety levels and half of the palliative patients had clinically symptomatic depression scores. The main symptoms of the patients were: fatigue, loss of appetite, pain, and shortness of breath. Patients’ and caregivers’ anxiety and depression scores were significantly correlated (anxiety r?=?0.386, depression r?=?0.416). Thirty-three percent of caregivers suffered from high anxiety and 28 % from depression. Spousal caregivers had higher psychological distress than other caregivers. Other relevant factors for higher distress were high financial burden and low social support. There was hardly any family member receiving professional psychological support.

Conclusions

In palliative patients, depressive symptoms should not be judged as a normal attendant of the terminal illness situation. Instead, patients should be referred to appropriate support services for pharmacological or psychological treatment. Spousal caregivers and caregivers who are socially not well integrated are in particular need of support. Attention to the financial burden of family caregivers is also very important. Due to the existing correlation between the psychological situation of palliative patients and their caring relatives, couples must be considered an emotional system rather than just two individuals.     

Coping with newly diagnosed upper gastrointestinal cancer: a longitudinal qualitative study of family caregivers’ role perception and supportive care needs

Background

Family caregivers of patients with poor prognosis upper gastrointestinal (GI) cancers are at high risk of experiencing psychological distress and carer burden. The early postoperative period is a time of high patient care needs and transition of care, with carers new to the caring role. This study aimed to explore the experiences of family caregivers of people diagnosed with upper GI cancer after surgical intervention to (1) identify their unmet supportive care needs and (2) investigate how family caregivers perceive their role during this time.

Methods

Family caregivers of newly diagnosed postsurgical upper GI cancer patients were recruited. Semi-structured telephone interviews were conducted at 3 weeks and 3 months post-surgery. Analysis involved a constant comparative approach. Sampling was discontinued when information redundancy was achieved. Fifteen family caregivers participated in the first interview and eight agreed to a second interview.

Results

Family caregivers reported significant information and support needs. Family caregiver distress was exacerbated by a lack of patient care knowledge. Access to support was limited by caregivers’ lack of understanding of the health system. Family caregivers view their role as part of their family responsibility.

Conclusions

This study provides new insight into the supportive care needs of family caregivers of upper GI cancer patients and the impact of unmet need on the emotional well-being of family caregivers. These results will inform future supportive care service development and intervention research aimed at reducing unmet supportive care needs and psychological distress of family caregivers of patients with poor prognosis upper GI cancer     

Distressed family caregivers of lung cancer patients: an examination of psychosocial and practical challenges

Purpose

Lung cancer and its treatment impose many demands on family caregivers, which may increase their risk for distress. However, little research has documented aspects of the caregiving experience that are especially challenging for distressed caregivers of lung cancer patients. This study aimed to explore caregivers’ key challenges in coping with their family member’s lung cancer.

Methods

Single, semi-structured qualitative interviews were conducted with 21 distressed family caregivers of lung cancer patients.

Results

Caregivers described three key challenges in coping with their family member’s lung cancer. The most common challenge, identified by 38 % of caregivers, was a profound sense of uncertainty regarding the future as they attempted to understand the patient’s prognosis and potential for functional decline. Another key challenge, identified by 33 % of caregivers, involved time-consuming efforts to manage the patient’s emotional reactions to the illness. Other caregivers (14 %) characterized practical tasks, such as coordinating the patient’s medical care, as their greatest challenge.

Conclusions

Results suggest that clinical efforts are needed to assist distressed caregivers in providing practical and emotional support to the patient and attending to their own emotional needs.     

Predictors of home death of home palliative cancer care patients: a cross-sectional nationwide survey

Objectives

To identify factors influencing the place of death among home palliative cancer care patients, focusing on the role of nurses in terms of pre- and post-discharge from hospital to home care settings.

Design, settings and participants

A cross-sectional nationwide questionnaire survey was conducted at 1000 randomly selected homecare agencies in Japan. The questionnaires were completed by primary community nurses of home palliative patients just after their discharge. A total of 568 responses were analyzed (effective response rate, 69%).

Results

Multivariate logistic regression analysis revealed the following independent factors of place of death among those patients: desire for home death at referral by both patient and family caregiver; caregiver relationship to patient as daughter or daughter-in-law; totally bedridden functional status of patient; patient not suffering from depression and/or anxiety at referral; patients and caregivers duly informed about the dying process/death in detail, as well as instructed by community nurses about pain management and how to treat/prevent bedsores in home care settings.

Conclusions

This study demonstrated the importance of both the hospital and community nurses’ role in increasing the patients’ chance of dying at home. Hospital nurses should support early transfer to home palliative care according to their assessment of the desire of patient/family caregiver for home death, the patients’ clinical status, and caregivers’ ability to provide patient care at home. Community nurses should inform patients/family caregiver in detail about the dying process/death just after discharge, relieve patient pain, treat/prevent bedsores, and instruct family caregivers on their symptom control.