View Of Care Research Articles

Bereaved Families' Perspectives of End-of-Life Care. Towards a Bicultural Whare Tapa Whā Older person's Palliative Care Model.

The views of family carers who provide end of life care to people of advanced age are not commonly known. We conducted a bicultural study with bereaved New Zealand Māori (indigenous) and non-indigenous family carers who, on behalf of their older family member, reflected on the end of life circumstances and formal and informal care experienced by the older person. Semi-structured interviews were undertaken with 58 people (19 Māori and 39 non-Māori), who cared for 52 family members who died aged over 80years. A Kaupapa Māori thematic analysis of family/whānau perspectives identified examples of good holistic care as well as barriers to good care. These are presented in a proposed Whare Tapa Whā Older Person's Palliative Care model. Good health care was regarded by participants as that which was profoundly relationship-oriented and upheld the older person's mana (authority, status, spiritual power) across four critical health domains: Whānau (social/family), Hinengaro (emotional/mental), Wairua (spiritual) and Tinana (physical) health domains. However, poor health care on one level impacted on all four domains affecting (reducing) mana (status). The "indigenous" model was applicable to both indigenous and non-indigenous experiences of end of life care for those in advanced age. Thus, Indigenous perspectives could potentially guide and inform end of life care for all.

A qualitative study of family carers views on how end-of-life communication contributes to palliative-oriented care in nursing home.

Although family-centered communication about end-of-life care has been recognized to promote palliative-oriented care in nursing home (NH), how this communication may work is still unknown. Therefore, we explored the mechanisms by which end-of-life communication may contribute to palliative-oriented care in NH from the perspective of bereaved family carers. A descriptive qualitative design was performed. Interviews were conducted with 32 bereaved family carers whose relative had died between 45 days to 9 months prior from 13 different NHs. A two-steps analysis process firstly with deductive and then with inductive content analysis was adopted. Four mechanisms by which end-of-life communication contributed to palliative-oriented care were identified: a) promoting family carers understanding about their relative's health conditions, prognosis, and treatments available; b) fostering shared decision-making between healthcare professionals and residents/family carers; c) improving knowledge of residents' preferences; and d) improving knowledge of family carers' preferences. Clear and in-depth communication provides insight into residents' and family carers' preferences for care and treatment at the end-of-life, and increases understanding and shared decision-making.

Celebrating 25 volumes of the Australian Journal of Primary Health

The Australian Journal of Primary Health is published by CSIRO PUBLISHING on behalf of the Australian Institute for Primary Care and School of Public Health, La Trobe University in association with the Primary and Community Health Network. The Journal is a refereed, international journal designed to publish articles on a range of issues influencing community health services and primary health care. The focus of the Australian Journal of Primary Health is on the integration of theory and practice in primary health utilising perspectives from a range of disciplines. The Journal publishes research articles, policy reports and analyses, book reviews, case reports, the views of practitioners, consumers, carers, students, and special interest groups, and descriptions of professional practice initiatives in the field of primary health care

'I've never drunk very much water and I still don't, and I see no reason to do so': a qualitative study of the views of community-dwelling older people and carers on hydration in later life.

Backgrounddehydration is associated with significant adverse outcomes in older people despite being largely preventable and treatable. Little research has focused on the views of community-dwelling older people on hydration, healthy drinking and the perceived importance of drinking well in later life.Objectivesto understand community-dwelling older people and informal carers’ views on hydration in later life and how older people can be supported to drink well.Methodsqualitative study using interviews and a focus group exploring hydration and nutrition in later life (24 older people at risk of malnutrition and dehydration, 9 informal carers) and thematic analysis.Resultsthis article presents the findings on hydration alone. Four themes are presented: perceptions of healthy drinking, barriers to and facilitators of drinking in later life and supporting older people to drink well. The perceived importance of adequate hydration in later life was polarised. Concerns about urinary incontinence and knowledge gaps were significant barriers. Consideration of individual taste preference and functional capacity acted as facilitators. Distinct habitual drinking patterns with medications and meals exist within individuals. Many relied on thirst at other times or when fluid demands are greater (such as hot weather), a known unreliable prompt in later life.Conclusionsolder people could be supported to drink well by building upon existing habitual drinking patterns. Primary care and public health should consider individual barriers, facilitators and tailored education. A multidisciplinary approach to promote hydration should be incorporated into care for older people with more complex needs.

Exploring the potential use of patient and public involvement to strengthen Indonesian mental health care for people with psychosis: A qualitative exploration of the views of service users and carers.

BackgroundPatient and public involvement (PPI) has the potential to strengthen mental health systems in Indonesia and improve care for people living with psychosis. Current evidence from other parts of the world demonstrates the need to understand the contexts in which PPI is to be enacted to ensure optimal implementation.ObjectiveTo understand service users’ and carers’ views on the current use and potential applicability of PPI within Indonesian mental health services.DesignQualitative study incorporating focus groups analysed using thematic analysis.Setting and participantsParticipants included 22 service users and 21 carers recruited from two study sites in Indonesia (Jakarta and Bogor). All participants had experience of psychosis either as a service user or carer.ResultsDespite the value attributed to PPI in relation to improving services and promoting recovery, current use of such activities in Indonesian mental health services was limited. Participants expressed a desire for greater levels of involvement and more holistic care but felt community organizations were best placed to deliver this because PPI was considered more congruent with the ethos of third‐sector organizations. Additional barriers to PPI included stigma and low levels of mental health literacy in both health services and communities.Discussion and conclusionParticipants felt that there was potential value in the use of PPI within Indonesian mental health services with careful consideration of individual contexts. Future aspirations of involvement enactment should ensure a central design and delivery role for third‐sector organizations. Facilitators to global collaborative research in the context of the current study are also discussed.

The views of social workers and special guardians on planning contact for special guardianship children

Purpose Special guardianship order (SGO) assessments require social workers to make plans and recommendations for ongoing post-SGO contact between the child and the parents. However, there is very little policy to inform and guide practitioners on how these duties should be undertaken, and no studies that describe current practice. The purpose of this paper is to investigate how the recommending of contact in special guardianship cases is currently working, by holding focus groups with social workers and special guardians. This paper reports on the results of a study to examine what contact plans social workers are recommending, the thinking behind their decisions and the views of the special guardians who have to make those plans work. Design/methodology/approach The research involved a mixed methods approach comprising of an online questionnaire, two focus groups for social workers and two focus groups for special guardians. This paper describes the second part of the study and reports on the qualitative results from the four focus groups. The methodology was based on a pragmatist theoretical position, and used an interpretivist approach and elements of the analytical procedure of grounded theory in order to generate inductive research. The focus group method was chosen as the best way to gather rich information on the opinions and ideas of practitioners who are recommending contact and the carers who are managing it. Findings Participants provided a wide range of views on the issues, with practitioners describing the challenges of planning contact, and special guardians explaining the problems they faced with the parents. Involving special guardians in the study gave a chance to include the different perspectives of the people who have to make the contact recommendations work, and contrast their views on contact planning with those of the professionals. The study makes recommendations for practice, which recognise the difficulty of preparing an initial contact plan that will remain relevant for years ahead. Research limitations/implications The number of focus groups the author held was limited by the author’s own personal resources and the time the author had available, and one group only had three social workers on the day. The author’s involvement affected the responses, and the author’s questions dictated the issues that were commented on, but the answers were the opinions that the participants wanted to express. The nature of the approach means that no two sets of focus group results would ever be the same. And as the direction of the discussions was largely dictated by the participants, the coverage of all aspects of contact was probably inconsistent. Practical implications This research sheds light on a crucial area of social work permanency planning, that has suffered from a lack of previous research, in order to better inform future practice. The paper reports on what contact plans social workers are recommending, the thinking behind their decisions and the views of the special guardians who have to make those plans work. It concludes with recommendations for improving future special guardianship policy and practice. Social implications The research clearly raises a number of specific difficulties faced by special guardians and problems with current policy and practice. These include the special guardians’ lack of understanding about contact, the difficulty for social workers of long-term planning, the challenge posed by uncooperative parents who behave badly, the view of carers for the need for a greater emphasis on the quality and reliability of contact, and the challenge to careful contact planning posed by the adversarial court process. Originality/value Special guardianship has had a major impact on permanency planning since its introduction 12 years ago. However, apart from one DfE study in 2014, very little research has been produced to inform policy and practice. There have been no studies specifically on contact in special guardianship cases, despite contact being one of the two major factors in determining the success of SGO placements. This study has provided the first in-depth evaluation of social worker contact planning in special guardianship, and the first investigation of special guardians’ views on contact.

Dying in acute hospitals: voices of bereaved relatives

BackgroundInternationally there is an increasing concern about the quality of end-of-life care (EoLC) provided in acute hospitals. More people are cared for at end of life and die in acute hospitals than in any other healthcare setting. This paper reports the views of bereaved relatives on the experience of care they and the person that died received during their last admission in two university adult acute tertiary hospitals.MethodsRelatives of patients who died were invited to participate in a post-bereavement postal survey. An adapted version of VOICES (Views of Informal Carers - Evaluation of Services) questionnaire was used. VOICES MaJam has 36 closed questions and four open-ended questions. Data were gathered in three waves and analysed using SPSS and NVivo. 356 respondents completed the survey (46% response rate).ResultsThe majority of respondents (87%: n = 303) rated the quality of care as outstanding, excellent or good during the last admission to hospital. The quality of care by nurses, doctors and other staff was highly rated. Overall, care needs were well met; however, findings identified areas of care which could be improved, including communication and the provision of emotional and spiritual support. In addition, relatives strongly endorsed the provision of EoLC in single occupancy rooms, the availability of family rooms on acute hospital wards and the provision of bereavement support.ConclusionsThis research provides a powerful snapshot in time into what works well and what could be improved in EoLC in acute hospitals. Findings are reported under several themes, including the overall quality of care, meeting care needs, communication, the hospital environment and support for relatives. Results indicate that improvements can be made that build on existing good practice that will enhance the experience of care for dying persons and their relatives. The study adds insights in relation to relative’s priorities for EoLC in acute hospitals and can advance care providers’, policy makers’ and educationalists’ priorities for service improvement.

Organisational strategies and practices to improve care using patient experience data in acute NHS hospital trusts: an ethnographic study

BackgroundAlthough NHS organisations have access to a wealth of patient experience data in various formats (e.g. surveys, complaints and compliments, patient stories and online feedback), not enough attention has been paid to understanding how patient experience data translate into improvements in the quality of care.ObjectivesThe main aim was to explore and enhance the organisational strategies and practices through which patient experience data are collected, interpreted and translated into quality improvements in acute NHS hospital trusts in England. The secondary aim was to understand and optimise the involvement and responsibilities of nurses in senior managerial and front-line roles with respect to such data.DesignThe study comprised two phases. Phase 1 consisted of an actor–network theory-informed ethnographic study of the ‘journeys’ of patient experience data in five acute NHS hospital trusts, particularly in cancer and dementia services. Phase 2 comprised a series of Joint Interpretive Forums (one cross-site and one at each trust) bringing together different stakeholders (e.g. members of staff, national policy-makers, patient/carer representatives) to distil generalisable principles to optimise the use of patient experience data.SettingFive purposively sampled acute NHS hospital trusts in England.ResultsThe analysis points to five key themes: (1) each type of data takes multiple forms and can generate improvements in care at different stages in its complex ‘journey’ through an organisation; (2) where patient experience data participate in interactions (with human and/or non-human actors) characterised by the qualities of autonomy (to act/trigger action), authority (to ensure that action is seen as legitimate) and contextualisation (to act meaningfully in a given situation), quality improvements can take place in response to the data; (3) nurses largely have ultimate responsibility for the way in which data are collected, interpreted and used to improve care, but other professionals also have important roles that could be explored further; (4) formalised quality improvement can confer authority to patient experience data work, but the data also lead to action for improvement in ways that are not formally identified as quality improvement; (5) sense-making exercises with study participants can support organisational learning.LimitationsPatient experience data practices at trusts performing ‘worse than others’ on the Care Quality Commission scores were not examined. Although attention was paid to the views of patients and carers, the study focused largely on organisational processes and practices. Finally, the processes and practices around other types of data were not examined, such as patient safety and clinical outcomes data, or how these interact with patient experience data.ConclusionsNHS organisations may find it useful to identify the local roles and processes that bring about autonomy, authority and contextualisation in patient experience data work. The composition and expertise of patient experience teams could better complement the largely invisible nursing work that currently accounts for a large part of the translation of data into care improvements.Future workTo date, future work has not been planned.Study registrationNIHR 188882.FundingThe National Institute for Health Research Health Services and Delivery Research programme.

Whose story is it? Mental health consumer and carer views on carer participation in research.

BackgroundMental health carers contribute a unique set of perspectives and lived experiences to research; however, national research ethics guidelines do not specifically address the issues that affect informal carers as participants.ObjectiveThis study sought to explore Australian mental health consumer and carer views on the ethical conduct of research involving mental health carers.DesignA public forum (n = 14; consumer = 5, carer = 9) and a subsequent series of interviews (n = 10; consumer = 5, carer = 4, both = 1) were conducted to investigate consumer and carer views on mental health research ethics. Data collection and analysis drew strongly on methodological features of grounded theory.ResultsConducting research involving carers and consumer‐carer relationships raises potential concerns related to story ownership. Lived experience stories have shared and separate elements; thus, it is important to consider potential risks to the privacy of non‐participants and of social harm to participants' relationships when conducting research in this space. These risks could be minimized and managed through communication between researchers and participants, and within relationships.ConclusionsWhen conducting research involving carers and consumer‐carer relationships, researchers may need to facilitate the negotiation of information‐sharing boundaries within relationships and the safe and confidential telling of shared stories.

What are the opportunities for cancer care and related research in primary care? A qualitative study of the views of patients, carers, and practice staff

BackgroundResearch to identify the role of primary care in cancer care is important. However, trials in primary care are difficult.AimTo understand how patients, families, and primary care clinicians view their role in cancer care and identify opportunities for cancer primary care research.MethodQualitative study embedded within a feasibility cluster randomised controlled trial of a primary care based needs assessment intervention. The Supportive Cancer Needs Survey (SCNS) was the main outcome. In-depth interviews with patients/carers and focus groups with primary care staff explored views on cancer care and trial participation. Data were recorded, transcribed verbatim, and analysed thematically by three independent researchers.ResultsFifteen cancer patients and three carers were interviewed and four focus groups (n = 11) were conducted. Three themes were generated satisfaction with current care; key time-points for improved cancer care; and information and research. Satisfaction with current care among patients was high in spite of 72% reporting at least one moderate-high unmet need at baseline. Most patients undergoing cancer treatment were unsure when to access primary care. Patients and carers highly valued proactive contact from their practice following diagnosis though this was uncommon. Post-oncology discharge was a key time-point for information needs and support for patients. Patients were reluctant to consider palliative care in spite of palliative care needs. Some felt therapeutic benefit from completing study measures.ConclusionPatients are satisfied with cancer primary care despite unmet needs. Palliative care is poorly understood by many who may benefit. Research participation may benefit some patients.

Recovery-focused mental health care planning and co-ordination in acute inpatient mental health settings: a cross national comparative mixed methods study

BackgroundInvolving mental health service users in planning and reviewing their care can help personalised care focused on recovery, with the aim of developing goals specific to the individual and designed to maximise achievements and social integration. We aimed to ascertain the views of service users, carers and staff in acute inpatient wards on factors that facilitated or acted as barriers to collaborative, recovery-focused care.MethodsA cross-national comparative mixed-methods study involving 19 mental health wards in six service provider sites in England and Wales. This included a survey using established standardised measures of service users (n = 301) and staff (n = 290) and embedded case studies involving interviews with staff, service users and carers (n = 76). Quantitative and qualitative data were analysed within and across sites using descriptive and inferential statistics, and framework method.ResultsFor service users, when recovery-oriented focus was high, the quality of care was rated highly, as was the quality of therapeutic relationships. For staff, there was a moderate correlation between recovery orientation and quality of therapeutic relationships, with considerable variability. Staff members rated the quality of therapeutic relationships higher than service users did. Staff accounts of routine collaboration contrasted with a more mixed picture in service user accounts. Definitions and understandings of recovery varied, as did views of hospital care in promoting recovery. Managing risk was a central issue for staff, and service users were aware of measures taken to keep them safe, although their involvement in discussions was less apparent.ConclusionsThere is positive practice within acute inpatient wards, with evidence of commitment to safe, respectful, compassionate care. Recovery ideas were evident but there remained ambivalence on their relevance to inpatient care. Service users were aware of efforts taken to keep them safe, but despite measures described by staff, they did not feel routinely involved in care planning or risk management decisions. Research on increasing therapeutic contact time, shared decision making in risk assessment and using recovery focused tools could further promote personalised and recovery-focused care planning.This paper arises from a larger study published by National Institute for Health Research (Simpson A, et al, Health Serv Deliv Res 5(26), 2017).

Health-Promoting Self-Care in Family Caregivers of People With Dementia: The Views of Multiple Stakeholders.

Family carers often experience difficulties managing their own needs, which can lead to ill health. This study aimed to explore the views of carers and other stakeholders about the factors related to health-promoting self-care behavior in family carers of people with dementia. This multimethod qualitative study involved three consultation events with multiple stakeholders (n = 46) and four focus groups with carers (n = 27). Anonymous notes were collected from the consultation events. Focus group discussions were tape recorded and transcribed verbatim. Inductive thematic analysis was used to analyze the data. Two overarching themes were identified and labeled "Services" and "Individual factors." Poor service organization and coordination, lack of respite breaks, lack of continuity of care, poor staff attitudes, as well as difficulty to prioritize own needs, health impact, financial impact, and relationships and feelings were related poorer carer health-promoting self-care behavior. Limited health-promoting self-care often led to situations of crisis, which were related to carers' health issues, need for emergency services, and unanticipated care home placement. Carers require high-quality respite to have more time to themselves, support from better coordinated and compassionate services, and more education and awareness about their own needs. There are several factors that may limit carers' involvement with health-promoting self-care activities, which may affect their own health, on the care provided to their relatives and on service use. Future research and policy need to consider how to better support cares to manage their own health issues.

What can nurses do to manage incontinence challenges in end-of-life care?

What can nurses do to manage incontinence challenges in end-of-life care?

Identifying research priorities for older people’s mental health services

Purpose Including the views of service users, carers and clinical staff when prioritising health research can ensure future projects are meaningful and relevant to key stakeholders. One National Health Service Foundation Trust in England, UK undertook a project to identify the top 10 research priorities according to people with experience using or working in services for dementia and older adult mental health. The paper aims to discuss these issues. Design/methodology/approach Service users with dementia and mental health difficulties; informal carers, family and friends of service users; clinical staff working in the Trust. Participants were surveyed for research ideas. Ideas were processed into research questions and checked for evidence. Participants were then asked to prioritise their personal top 10 from a long list of research questions. A shortlist of 26 topics was discussed in a consensus workshop with a sample of participants to decide on the final top 10 research priorities. Findings A total of 126 participants provided 418 research ideas, leading to 86 unique and unanswered research questions. In total, 58 participants completed interim prioritisation, 11 of whom were invited to the consensus workshop involving service users, carers and clinical staff. The final top 10 priorities were dominated by topics surrounding care, psychosocial support and mental health in dementia. Research limitations/implications Future research from the Trust and collaborating organisations can use these results to develop relevant projects and applications for funding. Originality/value This project has demonstrated the possibility of including key stakeholders in older adult mental health research priority setting at the local level.

Experiences of symptoms and health service preferences among older people living with chronic diseases during the last year of life.

There is limited understanding of the symptoms that older people living with cancer, chronic obstructive pulmonary disease and chronic kidney disease experience during the last year of life in Thailand, in addition to their health service preferences. To survey the symptom experiences and health service preferences at the end of life of older people with chronic illnesses from the perspective of bereaved carers. The study used a retrospective post-bereavement approach to collect quantitative data. Purposive sampling was used to select 76 bereaved relatives of older people living with chronic illnesses who had died in the previous 5 to10 months. Telephone interviews and a translated version of the Views of Informal Carers-Evaluation Services (VOICES) questionnaire were conducted. Data were analysed using the statistical package SPSS version 17. The overall quality of care received by older people living with chronic diseases during the last three months of life was described as 'good' (36%). However, in comparing the quality of care from different settings, most of the subjects (63%) thought that the quality of care at home should be rated as 'poor'. During the last twelve months, 35% of the respondents rated pain and poor appetite as the main symptoms, while 25% described experiencing 'worry' related to being at the end of life. The severity of many symptoms increased during the last three months of life; 21% of carers recommended that pain caused the most suffering to their relatives at 'all times', when compared with other symptoms of end of life. Around 21-35% reported that their relatives 'sometimes' experienced worry, low mood, breathlessness and oedema. During the last three days of life, it was reported by 97% of respondents that their relatives spent all of their time in hospital, and no respondents reported that their relatives had died at home. The study indicates that older people living with chronic diseases in Thailand are less likely to access specialist palliative care and are more likely to have poor symptom control at the end of life. It indicates that health services may not be meeting patients' needs and that there was clearly insufficient healthcare provision at home for older people to help them to manage their symptoms such as pain and breathlessness.

Fostering unaccompanied asylum seeking young people: the views of foster carers on their training and support needs

The implementation of the National Transfer Scheme, whereby local authorities across the UK are encouraged to voluntarily receive unaccompanied young asylum seekers, has prompted a necessary focus on the training needs of those caring for this population. As agencies consider how to build their capacity to support unaccompanied young people, this study set out to learn from the experiences and views of foster carers, in order to inform the development of effective carer training and support. Eight semi-structured interviews were undertaken with foster carers who have cared for unaccompanied young people in one county in the South West of England. The findings draw attention not only to the potential benefits of training focused specifically on fostering unaccompanied young people, but also reveal aspects of the impact that limited access to training and support can have upon carers. The findings shed light on the carers’ experiences of encountering ‘unknown’ factors and allow new insight into the networks they had developed over time to enhance their ability to access information and support as new challenges arise. Possible implications for local authorities and fostering agencies are considered.

Perceptions of complementary/alternative medicine use and influence on evidence-based asthma medicine adherence in Malaysian children

Complementary and alternative medicine (CAM) is widely used especially in Asia including for childhood asthma. The use of CAM could influence adherence to evidence-based (E-B) medicine. We explored the views of carers of Malaysian children with asthma regarding the use of CAM for childhood asthma, and its relationship with self-reported adherence to E-B medicine. We used a screening questionnaire to identify children diagnosed with asthma from seven suburban primary schools in Malaysia. Informed consent was obtained prior to the interviews. We conducted the interviews using a semi-structured topic guide in participants’ preferred language (Malay, Mandarin, or Tamil). All interviews were audio-recorded, transcribed verbatim and coded using Nvivo. Analysis was performed thematically, informed by the Necessity-Concerns Framework. A total of 46 carers (16 Malays, 21 Indians, 9 Chinese) contributed to 12 focus groups and one individual interview. We categorised participants’ as ‘Non-CAM’; ‘CAM’; or ‘combination’ user. Cultural practices and beliefs in the efficacy of CAM resulted in widespread use of CAM. Most carers used CAM as ‘complementary’ to E-B medicine. Concerns about dependence on or side effects of E-B treatment influenced carers’ decisions to rely on CAM as an ‘alternative’, with an important minority of accounts describing potentially harmful CAM-use. Healthcare professionals should discuss beliefs about the necessity for and concerns about use of both E-B medicine and CAM, and provide balanced information about effectiveness and safety. The aim is to improve adherence to regular E-B preventer medication and prevent delays in seeking medical advice and harmful practices associated with CAM.

What do patients and family-caregivers value from hospice care? A systematic mixed studies review

BackgroundIt is not known which attributes of care are valued the most by those who experience hospice services. Such knowledge is integral to service development as it facilitates opportunities for continuous improvement of hospice care provision. The objectives of this mixed-studies systematic review were to explore patients’ and their family carer views and experiences, to determine what they valued about adult hospice care in the UK.MethodsASSIA, PubMed, CINAHL and PsycINFO were searched from inception, up until March 2017 to identify qualitative, quantitative, and mixed-methods studies. Four additional searching techniques supplemented the main search and grey literature was included. A three-stage mixed-method systematic review was conducted with a sequential exploratory design. Thematic synthesis was used with qualitative data, followed by a narrative summary of the quantitative data. The qualitative and quantitative syntheses were then juxtaposed within a matrix to produce an overarching synthesis.ResultsThirty-four studies highlighted that what patients and carers valued was generally context specific and stemmed from an amalgamation of hospice service components, which both individually and collectively contributed to improvements in quality of life. When the syntheses of qualitative and quantitative studies were viewed in isolation, the value placed on services remained relatively consistent, with some discrepancies evident in service availability. These were commonly associated with geographical variations, as well as differences in service models and timeframes. Through an overarching synthesis of the qualitative and quantitative evidence, however, notable variations and a more nuanced account of what people valued and why were more prominent, specifically in relation to a lack of social support for carers, disparate access to essential services, the underrepresentation of patients with a non-cancer diagnosis, and the dissatisfaction with the range of services provided.ConclusionReview findings strengthen the existing evidence base and illuminates the underpinning elements of hospice care most valued by patients and their families. With large disparities in the availability of services, however, the underrepresentation of patients with non-malignant diseases and the limited evidence base demonstrating the adequate addressment of the social needs of carers, there continues to be considerable gaps that warrants further research.

Cultural adaptation of cognitive behavioural therapy (CBT) for patients with depression and anxiety in Saudi Arabia and Bahrain: a qualitative study exploring views of patients, carers, and mental health professionals

AbstractWestern values influence cognitive behavioural therapy (CBT) as it was primarily developed and practised in the West. As understanding the cultural context has been linked to better therapy outcomes, it has been suggested that CBT might need modification to non-Western clients’ cultural backgrounds. Previously we developed a cost-effective approach to adapt CBT for clients in China and Pakistan. In this study, we applied the same methodology for local clients suffering from depression and anxiety in the Kingdom of Saudi Arabia and Bahrain. This study aimed to understand the views of patients with depression and anxiety, caregivers and mental health professionals about CBT to develop guidelines for culturally adapting CBT for depression and anxiety. We conducted semi-structured interviews with the patients (n= 42), caregivers (n= 11), and psychiatrists and psychologists (n= 16). The data were analysed using a thematic framework analysis by identifying emerging themes and categories. The themes emerging from the analyses of interviews by each interviewer were compared and contrasted with those of other interviewers. The results highlighted barriers of access to and strengths of CBT while working with these patient groups. Patients and their caregivers in both countries use a bio-psycho-spiritual-social model of illness and seek help from multiple sources. Therapists emphasized the need for using local idioms, culturally appropriate translation and minor adjustments in therapy. There were no thematic differences between the two sites. These findings will be used to culturally adapt a CBT manual, which will be tested in a randomized controlled trial.Key learning aimsAfter reading this article, readers will be able to:(1)Understand the need for cultural adaptation of CBT.(2)Identify the necessary steps to adapt CBT for the Muslim Arab population.(3)Understand the modifications required to deliver culturally adapted CBT for the Muslim Arab population.

Physical Health Problems in Psychosis: Is It Time to Consider the Views of Family Carers?

Physical Health Problems in Psychosis: Is It Time to Consider the Views of Family Carers?