A conceptual model and key variables for guiding supportive interventions for family caregivers of people receiving palliative care

According to the World Health Organization, the patient and family should be viewed as the "unit of care" when palliative care is required. Therefore family caregivers should receive optimal supportive care from health professionals. However, the impact of supporting a dying relative is frequently described as having negative physical and psychosocial sequalae. Furthermore, family caregivers consistently report unmet needs and there has been a dearth of rigorous supportive interventions published. In addition, comprehensive conceptual frameworks to navigate the family caregiver experience and guide intervention development are lacking. This article draws on Lazarus and Folkman's seminal work on the transactional stress and coping framework to present a conceptual model specific to family caregivers of patients receiving palliative care. A comprehensive account of key variables to aid understanding of the family caregiver experience and intervention design is provided.

How well do family caregivers cope after caring for a relative with advanced disease and how can health professionals enhance their support?

Support for families during a person's advanced disease and also into the bereavement period is a major component of palliative care. However, because of the gaps in bereavement research in this area, there is a lack of evidence-based direction for health professionals.

A psycho-educational intervention for family caregivers of patients receiving palliative care:a randomized controlled trial

This study describes an evaluation of a psycho-educational intervention for family caregivers of patients dying of cancer at home. In a randomized controlled trial, participants (n = 106) received standard home-based palliative care services (n = 52) or these services plus the new intervention (n = 54). Data were collected at three time points: upon commencement of home-based palliative care (Time 1), five weeks later (Time 2), and then eight weeks following patient death (Time 3). No intervention effects were identified with respect to preparedness to care, self-efficacy, competence, and anxiety. However, participants who received the intervention reported a significantly more positive caregiver experience than those who received standard care at both Times 2 and 3. The findings indicate that it is possible to increase caregiver rewards despite being immersed in challenging circumstances that often yield considerable negative psychosocial sequelae. Furthermore, it is feasible for health professionals to discuss emotive topics, such as impending death, with caregivers without adverse effects.

Meeting the supportive needs of family caregivers in palliative care:challenges for health professionals

Caring for a dying relative is demanding, and family caregivers have acknowledged many unmet needs associated with their caregiver role. Consistently, caregivers of dying patients with cancer have reported that they need more support and information from health care professionals. Moreover, a number of palliative care clinicians and researchers have called for interventions to enhance the support offered to family caregivers. However, before researchers can develop and test palliative care interventions directed to families, it is important to identify barriers that may confront health care professionals with regard to the provision of supportive family care. For new interventions to be feasible they must be applicable within the constraints of current palliative care service delivery environments. This paper provides an account of issues that may impinge on optimal transference of supportive strategies from health care professionals to family caregivers of patients receiving palliative care. By acknowledging these barriers to supportive care, researchers and health care professionals can begin to design and implement interventions that are clinically relevant and more likely to be effective.

The experience of research participation for family caregivers of palliative care cancer patients

There have been concerns raised regarding the ethical merit of involving dying patients and family caregivers as research participants. This study sought feedback from 103 primary family caregivers who had participated in a longitudinal research project. Caregivers were sent a questionnaire regarding the benefits and negative aspects associated with participating in research while also supporting or having supported a relative dying of cancer. The study identified that almost three quarters (71.1%) of the 45 respondents reported benefits of being involved in research and the majority (88.9%) cited no negative aspects associated with research participation. Findings of the study suggest that it is pertinent to invite family caregivers to be involved in palliative care research. Moreover, this study demonstrated that not only is it probably safe for family caregivers to be involved in research but also that many participants actually derive benefits.

Children’s Views Matter Too! A Pilot Project Assessing Children’s and Adolescents’ Experiences of Clinical Psychology Services

This pilot study explored the experiences and understanding of clinical psychology practices and services of children and adolescents attending clinical psychology outpatient appointments. Fifteen young participants took part in the study. A content analysis indicated that young children and adolescents have an appropriate understanding of the role of the clinical psychologist, with older children commenting on the uniqueness and value of the therapeutic relationship. Attendance was rated as positive and helpful with regards to difficulties across all ages; however, many children were not consulted with at the point of referral and many did not know why they were attending. Implications for assessing children's and adolescents’ experiences of clinical psychology services are discussed.

A ten year retrospective audit of clinical psychology referrals within a paediatric CF team

Objective: This retrospective audit was undertaken to explore the nature of referrals made by the paediatric CF team to the Clinical Psychologist over a period of 10 years. The aim of the audit was to identify patterns or trends related to difficulties referred by the team.
Methods: A database consisting of all referrals received over a ten year period from 2001-2010 was created. A coding template was then created by KR and AC, which allowed for the categorisation of referrals into three main themes: Mood disturbance; CF related events; and non-CF related events. The same coding template was used to categorise referrals to the adult CF service. Descriptive statistics were used to interpret the data.
Results: Over the ten year period, 106 young people with CF were referred to psychology, representing 266 referrals. On average, a referral was made every two weeks. The most common reason for referral was for CF related events (i.e. adherence, living everyday life with CF). Referrals were found to increase with age. Both genders were equally likely to be referred, with females being re-referred most frequently, indicating increased psychological morbidity. The majority of referrals (79%) were repeat referrals, indicating that psychology input is focused upon a small number of young people but over a period of time. In a typical year (09-10), only 16% of all young people with CF were able to access psychology services. Conclusion: This audit identified patterns related to inequality of access, gender differences, and the identification of common concerns across age groups. The audit also highlighted areas where early intervention and training efforts could be targeted.

A ten year audit of clinical psychology referrals in the regional Adult Cystic Fibrosis Unit in Northern Ireland

Objectives: A retrospective audit was conducted into Clinical Psychology referrals made by the adult cystic fibrosis (CF) team over a ten year period from 2001-2010. The aim of the audit was to examine the psychological difficulties referred to Clinical Psychology and identify any trends.
Methods: A database of all referrals received over a ten year period was created. A coding template was created by KR and AC which allowed for the categorisation of referrals into three main themes: Mood disturbance, CF related events and non-CF related events. The same coding template was used to categorise referrals to the children’s CF service. Descriptive statistics were used to interpret the data.
Results: In 2009/10, 11% of the adult CF population in Northern Ireland were referred to Clinical Psychology. In the past 10 years there were 200 referrals and 105 adults who accessed Clinical Psychology services. The majority of referrals (67%) were re-referrals (range 2-7). More females were referred and they were also more likely to be referred repeatedly The main reason for referral was anxiety. Depression, adherence and end of life/transplant issues also accounted for a large proportion of referrals. A small proportion of referrals were due to non CF related events. There were age and gender differences in the reasons for referral.
Conclusion: A minority of CF patients attending the regional unit were referred to Clinical Psychology. Those who accessed the services appear to be at increased risk of psychological morbidity as re-referral rates are high. The gender difference in referral and re-referral rates may reflect a difference in psychological morbidity or males not accessing services.

Reducing the psychological distress of family caregivers of home based palliative care patients: Longer term effects from a randomised controlled trial.

Background: Palliative care incorporates comprehensive support of family caregivers because many of them experience burden and distress. However, evidence-based support initiatives are few.

Purpose: We evaluated a one-to-one psychoeducational intervention aimed at mitigating the distress of caregivers of patients with advanced cancer receiving home-based palliative care. We hypothesised that caregivers would report decreased distress as assessed by the General Health Questionnaire (GHQ).

Method: A randomised controlled trial comparing two versions of the delivery of the intervention (one face-to-face home visit plus telephone calls versus two visits) plus standard care to a control group (standard care only) across four sites in Australia.

Results: Recruitment to the one visit condition was 57, the two visit condition 93, and the control 148. We previously reported non-significant changes in distress between times 1 (baseline) and 2 (1-week post-intervention) but significant gains in competence and preparedness. We report here changes in distress between times 1 and 3 (8-week post-death). There was significantly less worsening in distress between times 1 and 3 in the one visit intervention group than in the control group; however, no significant difference was found between the two visit intervention and the control group.

Conclusions: These results are consistent with the aim of the intervention, and they support existing evidence demonstrating that relatively short psychoeducational interventions can help family caregivers who are supporting a dying relative. The sustained benefit during the bereavement period may also have positive resource implications, which should be the subject of future inquiry. © 2014 The Authors. Psycho-Oncology published by John Wiley & Sons Ltd.

The health status and health service needs of primary caregivers of cancer survivors: a mixed methods approach

This study aimed to measure the health status and care needs of people who provide informal care to cancer survivors in the UK. Semi-structured interviews were conducted with a purposive sample of 24 cancer professionals to identify the care needs of caregivers. In addition, we conducted a postal survey measuring the health and wellbeing (SF-36) and health service utilisation of 98 primary caregivers of a random sample of cancer survivors, 2-20 years post-treatment. Interviews indicated that caregivers’ needs were largely unmet. In particular, there appeared to be a need in relation to statutory health care provision, information, psychological support and involvement in decision making. There were no significant differences between survivors and caregivers in terms of mental health scores; and caregivers performed better on physical health domains compared to cancer survivors. Compared to UK norms and norms for caregivers of other chronic conditions, cancer caregivers had substantially lower scores on each SF-36 health domain. Cancer may impact negatively on an informal caregiver’s health long after treatment has ended. Providing appropriate and cancer specific information may alleviate difficulties and improve health and wellbeing. Specific concentration should be given to the development and delivery of information support for caregivers of post-treatment cancer survivors.

A pilot study of a family focused, psychosocial intervention with war-exposed youth at risk of attack and abduction in north-eastern Democratic Republic of Congo

Rural communities in the Haut-Uele Province of northern Democratic Republic of Congo live in constant danger of attack and/or abduction by units of the Lord's Resistance Army operating in the region. This pilot study sought to develop and evaluate a community-participative psychosocial intervention involving life skills and relaxation training and Mobile Cinema screenings with this war-affected population living under current threat. 159 war-affected children and young people (aged 7-18) from the villages of Kiliwa and Li-May in north-eastern DR Congo took part in this study. In total, 22% of participants had been abduction previously while 73% had a family member abducted. Symptoms of post-traumatic stress reactions, internalising problems, conduct problems and pro-social behaviour were assessed by blinded interviewers at pre- and post-intervention and at 3-month follow-up. Participants were randomised (with an accompanying caregiver) to 8 sessions of a group-based, community-participative, psychosocial intervention (n=79) carried out by supervised local, lay facilitators or a wait-list control group (n=80). Average seminar attendance rates were high: 88% for participants and 84% for caregivers. Drop-out was low: 97% of participants were assessed at post-intervention and 88% at 3 month follow-up. At post-test, participants reported significantly fewer symptoms of post-traumatic stress reactions compared to controls (Cohen's d=0.40). At 3 month follow up, large improvements in internalising symptoms and moderate improvements in pro-social scores were reported, with caregivers noting a moderate to large decline in conduct problems among the young people. Trial Registration clinicalTrials.gov, Identifier: NCT01542398.