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.     

Dyadic relational resources and role strain in family caregivers of persons living with dementia at home: A cross-sectional survey

Background

Family caregivers of older persons with dementia face negative impacts such as heightened role strain due to care receivers’ incremental loss of cognitive function. Dyadic relational resources were found to protect caregivers against negative caregiving outcomes while caring for cancer patients, but had not been explored in caregivers of patients with dementia.

Objective

To explore whether the impact of caregiving demand/care receivers’ cognitive functioning on caregiver role strain is moderated by dyadic relational resources.

Design

Cross-sectional correlational survey.

Setting

The neurological clinics of a 3700-bed medical centre, neurological ward, and day care centre affiliated with a regional hospital in northern Taiwan.

Participants

A convenience sample of 219 family caregivers and care receivers with dementia was enrolled, with 197 (90%) completing the study questionnaires.

Method

Data were collected from family caregivers’ self-completed questionnaires from December 2010 to November 2011. We examined the moderating effects of caregiving demand/care receiver dementia severity and dyadic relational resources (mutuality, preparedness and predictability) on caregiving outcome (role strain) using hierarchical multiple regression analyses. Moderating effects were examined according to two- and three-way interaction terms in the regressions. We also explored the simple effect of each independent variable on role strain.

Results

The dyadic relational resources of mutuality and preparedness moderated the effects of caregiving demand on caregivers’ role strain. That is, a high level of mutuality and preparedness protected caregivers from high levels of role strain, even when caregiving demand was high. Another important factor was a high level of predictability, which tended to decrease role strain. Finally, the association between care receiver cognitive functioning and caregiver role strain was influenced by the level of mutuality between caregiver and care receiver. More specifically, high levels of mutuality diminished role strain in caregivers of patients with mild dementia.

Conclusions

Dyadic relational resources may moderate the effects of role strain. These findings suggest that these dyadic relational resources should be enhanced for family caregivers of patients with dementia to ease their caregiving role strain.     

Parents’ and health professionals’ perceptions of family centred care for children in hospital, in developed and developing countries: A review of the literature

Background

In paediatrics family centred care (FCC) is a widely used model of care that is believed to help meet the emotional, psychological and developmental needs of the hospitalized child. However, perceptions of the effectiveness of the operationalization of FCC in terms of meeting family needs are varied.

Objectives

The aim of this review was to explore the attitudes towards and experiences of FCC by healthcare professionals and parents during the hospitalization of a child.

Design

A comprehensive search of the literature was undertaken drawing principally on key electronic databases of the health literature, augmented with reference list searching.

Data sources

: English language publications indexed in CINAHL, EMBASE, The Cochrane Database of Systematic Reviews, AMED, MEDLINE and PsycINFO published from 1997 to 2009.

Review methods

: Two review authors independently undertook the searches and two to three authors independently assessed trial quality, family centeredness, data extraction and thematic synthesis. Fifteen studies were reviewed.

Results

Four themes emerged from the literature on communication, healthcare professional and parent relationships, caring for parents and available resources. The differences, similarities and interpretation between healthcare professionals’ and parents’ perspectives on these themes are reported.

Conclusion

The effectiveness of FCC can often depend on individual demographic characteristics of the child, parent and healthcare professional. A broad spectrum of variability exists in the perceptions of healthcare professionals and parents on parental needs and FCC within a hospital context.     

Living through the death of a child: a qualitative study of bereaved parents' experiences

Design

Cross-sectional qualitative study.

Data sources

Interviews with purposeful sample of 25 recently bereaved parents.

Methods

Semi-structured in-depth interviews.

Results

Four analytically distinct processes were identified in the responses of parents to the death of a child. These are referred to as ‘piloting’, ‘providing’, ‘protecting’ and ‘preserving’. Regardless of individual circumstances, these processes were integral to all parents’ coping, enabling an active ‘doing’ for their child and family throughout the trajectory of their child's illness and into bereavement.

Conclusions

Facilitating the capacity of parents to ‘do’ is central to coping with the stress and uncertainty of living through the death of a child. The provision of informational, instrumental and emotional support by health care professionals in the context of ‘doing’ is core to quality palliative 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 lived experience of parents of children admitted to the pediatric intensive care unit in Lebanon

Background

Family caregivers have a significant responsibility in the care of their child in the Pediatric Intensive Care Unit (PICU). Parents staying with their child in the PICU have particular needs that should be acknowledged and responded to by clinicians. Several studies have been conducted in the USA and Europe to try to understand the experience of family caregivers of children admitted to the Pediatric Intensive Care Unit. There are no such studies in Lebanon or the Middle East where the culture and support systems differ from other countries.

Objective

To understand the lived experience of Lebanese parents of children admitted to the PICU in a tertiary hospital in Beirut.

Design

Phenomenological study.

Methods

The study followed purposeful sampling in which 10 parents (mother or father) of children admitted to PICU were interviewed. Data were analyzed following the hermeneutical process as described by Diekelmann and Ironside (1998).

Results

A constitutive pattern “Journey into the unknown” which constitutes an overarching theme and four major themes with subthemes emerged from the data. These were: We are human beings with dignity “; “looking for a healthier environment”; Dependence on God and “The need to be in the loop” reveal the parents’ journey into the unknown.

Conclusion

This qualitative study adds to the knowledge that would help health care workers understand the experience of Lebanese parents with a child in PICU and to highlight the significance of this experience to them. The findings could be used to inform the development of a PICU parental satisfaction instrument for the sample group.     

Quality of life in caregivers of a family member with serious mental illness: Evidence from China

Purpose

To evaluate the quality of life (QoL) and social support among family caregivers of a family member with a mental illness and to identify factors associated with the QoL.

Surviving a critical illness through mutually being there with each other: A grounded theory study

Objectives

The objectives of this study were to conduct a theoretical analysis of the critically ill patients’ perceptions of the impact of informal support and care from their main family carer (MFC) during the time of their stay in the hospital (ICU) and thereafter (and vice versa).

Research design and setting

The grounded theory method was used to investigate the target phenomenon in the ICU of a large general hospital, and three months later in the community after the patients were discharged. Qualitative data were collected through participant observation and interviews for constant comparative analysis until theoretical saturation.

Results

A substantive theory emerged and it illustrated and described the dynamic actions and interactions between critically ill patients and their MFC during the process of recovery. Three categories, 1) being there with, 2) coping and 3) self-relying, comprise the essential components of this theory.

Conclusion

The theory represents the core process of ‘surviving a critical illness through mutually being there with each other’ in which both the patients and their MFC are involved. Implications and recommendations were proposed to provide a basis for further research and nursing practice on the phenomenon of informal support and care of critically ill patients and their recovery.     

Family Functioning Is Associated With Depressive Symptoms in Caregivers of Acute Stroke Survivors

Epstein-Lubow GP, Beevers CG, Bishop DS, Miller IW. Family functioning is associated with depressive symptoms in caregivers of acute stroke survivors.

Objective

To determine whether family functioning is uniquely associated with caregiver depressive symptoms in the immediate aftermath of stroke.

Design

Cross-sectional data from the baseline assessment of an intervention study for stroke survivors and their families.

Setting

Neurology inpatient service of a large urban hospital.

Participants

Stroke survivors (n=192), each with a primary caregiver. The mean age of stroke survivors was 66 years, and most, 57%, were men (n=110). The mean age of caregivers was 57 years, and 73% (n=140) of the caregivers were women. Eighty-five percent of caregivers were white.

Interventions

Not applicable.

Main Outcome Measures

Measures were chosen to assess caregivers' depressive symptoms (Centers for Epidemiologic Studies Depression Scale), family functioning (Family Assessment Device), and additional factors such as health status (Medical Outcomes Study 36-Item Short-Form Health Survey) and stroke survivors' cognitive abilities (modified Mini-Mental State Examination) and functional impairments (FIM and Frenchay Activities Index).

Results

Depressive symptoms were mild to moderate in 14% and severe in 27% of caregivers. Family functioning was assessed as unhealthy in 34% of caregiver-patient dyads. In statistical regression models, caregiver depression was associated with patients' sex, caregivers' general health, and family functioning.

Conclusions

Forty-one percent of caregivers experienced prominent depressive symptoms after their family member's stroke. Higher depression severity in caregivers was associated with caring for a man, and having worse health and poor family functioning. After stroke, the assessment of caregivers' health and family functioning may help determine which caregivers are most at risk for a depressive syndrome.     

The effectiveness and active ingredients of mutual support groups for family caregivers of people with psychotic disorders: A literature review

Objectives

To explore the literature through a systematic search to assess the effectiveness of mutual support groups for family caregivers of people with schizophrenia and other psychotic disorders.

Methods

This review of the research literature was based on the procedures suggested by the National Health Service Centre for Reviews and Dissemination (2001) Report Number 4 in the UK [National Health Service Centre for Reviews and Dissemination, 2001. Undertaking Systematic Reviews of Research on Effectiveness: CRD's Guidance for those Carrying out or Commissioning Reviews (CRD Report Number 4). 2nd ed., University of York, York, UK]. A combined free-text and thesaurus approach was used to search relevant research studies within electronic databases, including Medline, Embase, CINAHL, OVID full-text, PsycINFO, the Cochrane Library, the British Nursing Index, the NHS National Research register, and System for Info on Grey literature for the period 1980–2007. Reference lists of all retrieved literature were also searched to identify studies that may have been missed. Twenty-five research studies were selected for inclusion in the analysis on the basis that they were either family led or professional-facilitated support group programmes for family caregivers of people with schizophrenia or other psychotic disorders.

Results

The review identified that most studies on this group programme used qualitative, exploratory cross-sectional surveys and quasi-experimental study designs (n = 19); six were experimental studies or randomised controlled trials. There were only a few small-scale, single-centre controlled trials with the findings supporting the significant positive effects of mutual support groups on families’ and patients’ psychosocial well-being. A number of non-experimental studies conducted in Western countries reported benefits of group participation up to 1 year, such as increased knowledge about the illness, reduced burden and distress, and enhanced coping ability and social support. However, many of these studies lacked rigorous control and did not use standardised and valid instruments as outcome measures or schedule follow-up to examine the long-term effects of support groups on families and/or patients.

Conclusions

With increasing recognition of benefits from mutual support, this review highlights the dearth of evidence for the effects and active ingredients of mutual support groups. Mutual support may have significant impacts on long-term psychosocial and nursing interventions for both patients with severe mental illness and their families in community mental health care. Further research is recommended to investigate the therapeutic components and effects of mutual support groups for family caregivers of people with schizophrenia and psychotic disorders across cultures.     

A narrative review of interventions to support family carers who provide physical care to family members with cancer

Objectives

Most reports of cancer caregivers’ needs focus on information and psychosocial needs. Less is known about practical knowledge and support carers need to provide physical care in the home. This review aimed to identity and critique studies of the development and/or evaluation of interventions to enable family carers to provide physical/practical care to a family member with cancer.

Design

Narrative review.

Data sources

Studies which included adult carers who provided care to a family member with cancer (any stage). Search sources included Psych Info., Cochrane Central Register of Controlled Trials, Embase Ovid, Embase, Ovid Medline, CINAHL, other databases, systematic and other reviews.

Review methods

All types of study designs were included. Initially, multiple and broadly defined search strategies and terms were used to capture the range of potential studies; later more refined procedures were applied.

Results

In total, 19 studies were included in the review. Interventions focused on skills development (n = 1), managing symptoms (n = 9), problem solving (n = 5) and learning (n = 4). Few studies were identified with well-defined and evaluated interventions to assist carers to provide physical care for their family member with cancer.

Conclusions

Future research is needed to develop well-defined interventions on practical skills and evaluate the outcomes for patients and caregivers.     

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.

     

Taiwanese women’s experiences of becoming a mother to a very-low-birth-weight preterm infant: A grounded theory study

Background

Significant improvements have occurred in the survival rates of small preterm infants. As more infants survive their preterm birth, the number of parents associated with this experience has also increased. Clearly, the birth of very-low-birth-weight (VLBW) preterm infants poses considerable challenges for all mothers. These challenges are further compounded in Taiwan, where women are traditionally required to practise the cultural ritual (Zuo Yue Zi) which includes confinement to the house with a special balanced diet for the first month postnatally. Moreover, there is a deficit of information on mothers’ experiences when their preterm infants are in neonatal intensive care units (NICUs).

Aims

The aim of this study was to explore Taiwanese mothers’ (n = 26) parenting experiences when their preterm infants were in NICUs.

Design

A qualitative research approach, grounded theory, was used to explore the mothers’ lived reality of these experiences.

Methods

In-depth interviews and participant observations were conducted to gain insight into the experience of parenting.

Findings

A theoretical model was formulated from the findings delineating Taiwanese mothers’ parenting experiences during their preterm infants stay in hospital. The findings indicated that the preterm birth, together with the admission of their infants to a NICU, presented mothers with an unexpected crisis. The particular cultural postnatal ritual posed this group of Taiwanese mothers with an additional difficulty in establishing physical interactions. However, the Taiwanese mothers created alternative channels of contact with their hospitalised infants using emotional connections, while the physical interactions were certainly limited. Despite all the difficulties this group of Taiwanese mothers faced and resolved, they all gradually captured and embraced the parenting role. The finding of this study further indicated that the support the mothers received from the healthcare professionals and the social networks the mothers made helped to create the connections that developed between the mothers and infants, making their journey towards parenthood possible.

Conclusion

The theoretical model developed in this study is the first of its kind to contribute to the field of neonatal nursing in Taiwan. This would help Taiwanese women come to terms with becoming mothers of VLBW infants and subsequently enhance their parenting role.     

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.

     

The views and preferences of resuscitated and non-resuscitated patients towards family-witnessed resuscitation: A qualitative study

Background

A number of international studies have explored the views of family members and healthcare professionals on the concept of family witnessed resuscitation. However, the perspective and preferences of patients have been under-researched.

Objectives

To explore the views and preferences of resuscitation survivors and those admitted as emergency cases, as to whether family members should be present at their resuscitation.

Design

This paper reports the qualitative findings of a wider study, whose aim was to explore patient preferences towards family witnessed resuscitation.

Settings

Study sites included four acute university hospitals in two large cities of the South-West of England.

Participants

A purposive sample of 21 patients who underwent successful resuscitation and 41 patients, who presented to hospital as emergency cases, but without the experience of resuscitation, were recruited to the study.

Methods

To generate in-depth understanding about the phenomenon under inquiry, qualitative data were collected from face-to-face interviews. All responses were hand written and analysed using recognised qualitative techniques.

Findings

Three main themes emerged and these included: ‘being there’, ‘welfare of others’ and ‘professionals’ management of the event’. While the majority of participants supported the premise of having loved ones present during resuscitation, their motives varied and often related to the needs of families. Participants recognised that healthcare professionals had to exercise discretionary judgements to manage the resuscitation, which could embrace shielding relatives from distressing scenes and dealing with issues of confidentiality.

Conclusions

The study provides a unique understanding of patient preferences of family witnessed resuscitation with some of their views contesting arguments in the literature. Patients’ perspectives suggest both relatives and they themselves benefit in different ways. Although participants recognised that family members had emotional, informational and proximity needs, these had to be balanced with allowing the resuscitation team to manage the clinical emergency and make decisions. It is also evident that not all patients wish their families to be present. Healthcare professionals should strive to identify the wishes of patients and relatives in respect to family witnessed resuscitation and facilitate the presence of loved ones as appropriate. Further research into the area is still required.     

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.     

Japanese people's preference for place of end-of-life care and death: a population-based nationwide survey

Context

Japanese people's preferred place of end-of-life care may be affected by their experiences, perceptions, and knowledge related to the end of life.

Objectives

The aims of this study were to clarify the Japanese population's preferences for the place of end-of-life care and death and to identify the determinants of each choice of preferred place of end-of-life care within their experiences, perceptions, and knowledge.

Methods

A total of 2000 Japanese people aged 40–79 years participated in a cross-sectional nationwide survey.

Results

Fifty-five percent (n = 1042) responded. Regarding place of end-of-life care, approximately 44% of the general population preferred home, 15% preferred hospital, 19% preferred palliative care unit, 10% preferred public nursing home, 2% preferred private nursing home, and the remaining 11% was unsure. Multinomial logistic regression analysis revealed that the following factors affect people’s preferences regarding place of care: 1) experiences, such as “visiting hospital regularly” and “experiencing home death of relatives,” 2) perceptions, such as “giving due thought to their own death on a daily basis” and “perceiving lower home palliative care costs to be appropriate after comparing hospital admission fees,” and 3) knowledge of “home care nursing” and “24-hour home palliative system by physicians and nurses using insurance.” These factors correlated with preference for hospital, palliative care unit, or public nursing home, when compared with the preference of home.

Conclusion

The present findings may help to develop an effective end-of-life care system in Japan, in line with people’s various preferred locations for such care.     

What is the role of the general practitioner towards the family caregiver of a community-dwelling demented relative?: A systematic literature review

Objective

To identify the attitudes and perspectives of the family physician towards the caregivers of demented relatives and to describe the caregivers’ satisfaction.

Design

Systematic review.

Subjects

The studied population consisted of dementia family and their general practitioners.

Main outcome measures

Outcome measures were the generic tasks and skills of the general practitioner to improve home care from the perspective of the family caregiver. Caregivers were assessed on satisfaction regarding the care provided by their general practitioner.

Results

The general practitioner is aware of his/her skills and limits in all aspects of dementia care and his/her role towards the family caregiver. They also acknowledged the importance of an adequate diagnostic process, but they felt uncomfortable disclosing the diagnosis to both the patient and the caregiver. They reported having more confidence in treatment matters than in diagnostic stages. Caregivers’ reports on the attitude of their general practitioner in the diagnostic process were rated from helpful to poorly empathized. General practitioners found themselves to be highly involved in dementia home care, but caregivers rated their involvement to be insufficient. The lack of appropriate communication skills of general practitioners was also not appreciated by the caregivers. A lack of time and reward was considered by the general practitioner to be a major obstacle in dementia care.

Conclusion

The key role of general practitioners as care providers and care planners is consolidated by the family caregivers’ confidence in their skills. Clear guidelines from early diagnosis to adequate referrals should improve the ability of the general practitioner to support these time and energy-consuming home-care situations. Intervention studies addressing the gaps in the skills of the general practitioners in dementia home care management could be helpful in supporting the family caregiver.