Assessing the suitability of the Carer Support Needs Assessment Tool (CSNAT-Paediatric) for use with parents of children with a life-limiting condition: A qualitative secondary analysis.

BACKGROUND: The demands of caring for a child with a life-limiting condition can have a profound impact on parents' health and wellbeing. Currently, there is no standard procedure for identifying and addressing the support needs of these parents. AIM: To assess the suitability of the Carer Support Needs Assessment Tool (CSNAT (Paediatric)) for use with parents of children with a life-limiting condition. DESIGN: Secondary qualitative content analysis of two qualitative datasets exploring the health, wellbeing and experiences of support of mothers and fathers of children with a life-limiting condition. SETTING: A total of 30 mothers and 12 fathers were recruited via four UK children's hospices and social media. RESULTS: Parental experiences of support mapped onto the existing domains of the CSNAT (Paediatric). One aspect of their experience, surrounding their child's educational needs, went beyond the existing domains of the CSNAT. An adapted version of the tool CSNAT (Paediatric) should include this domain. CONCLUSION: The CSNAT (Paediatric) is a relevant tool for the assessment of parental support needs. Further research should assess the acceptability and feasibility of implementation of the broader intervention: CSNAT-I (Paediatric).

Increased preparedness for caregiving among family caregivers in specialized home care by using the Carer Support Needs Assessment Tool Intervention.

OBJECTIVES: Family caregivers often feel insufficiently prepared for a caregiving role, experiencing challenges and demands related to care at home that may negatively affect their own quality of life. Supportive interventions have been shown to influence negative effects, but more studies are needed. Therefore, this study aims to explore potential effects of the Carer Support Needs Assessment Tool Intervention on preparedness, caregiver burden, and quality of life among Swedish family caregivers in specialized home care. METHODS: The study had a pre-post intervention design and was conducted at 6 specialized home care services in Sweden. Family caregivers who received the intervention completed a questionnaire, including the Preparedness for caregiving scale, Caregiver Burden Scale, and Quality of Life in Life-Threatening Illness - Family carer version, at 2 time points, baseline and follow up, about 5 weeks later. Data were analyzed using descriptive statistics and Wilcoxon signed-rank test. RESULTS: Altogether, 33 family caregivers completed the baseline and follow-up assessment. A majority were retired (n = 26, 81%) and women (n = 19, 58%) and two-fifths had a university degree (n = 13, 41%). The family caregivers had significantly increased their preparedness for caregiving between the baseline and follow-up assessment (Mdn = 18 vs. 20, p = 0.002). No significant changes were found on caregiver burden or quality of life. SIGNIFICANCE OF RESULTS: The results add to knowledge regarding the Carer Support Needs Assessment Tool Intervention's potential to improve family caregiver outcomes. Findings suggest that the intervention may be used to improve the preparedness for caregiving and support among family caregivers in specialized home care.

Enabling professional and personal growth among home care nurses through using the Carer Support Needs Assessment Tool Intervention-An interpretive descriptive study.

AIM: To explore nurses' experiences of supporting family caregivers in specialised home care while learning to use the Carer Support Needs Assessment Tool Intervention. BACKGROUND: The Carer Support Needs Assessment Tool Intervention can provide guidance for discussions with family caregivers in specialised home care concerning their specific support needs. Little attention has been paid to how nurses experience the use of the intervention in their everyday practice. DESIGN: This longitudinal study adopted an inductive qualitative approach using interpretive description. METHODS: Interviews were conducted at two time points. A total of 22 interviews took place with 12 nurses recruited from six specialised home care services. Data were analysed using interpretive description. RESULTS: Nurses' everyday clinical practice changed while learning to use the Carer Support Needs Assessment Tool Intervention, and they experienced professional and personal growth. Their supportive inputs shifted from being reactive towards being more proactive. Their approach changed from taking on great professional responsibility, towards a shared responsibility with family caregivers. The support altered from ad hoc contacts in the hallway, towards scheduled trustful conversations. Nurses were concerned about the amount of time and energy this kind of support might require. They pointed to the importance of holding good nursing skills to conduct this new way of having conversations. CONCLUSION: Nurses' everyday clinical practice can be further developed through the use of the Carer Support Needs Assessment Tool Intervention. Nurses may develop both professionally and personally, increasing their ability to provide person-centred support. RELEVANCE TO CLINICAL PRACTICE: With the use of the Carer Support Needs Assessment Tool Intervention, nurses can create trusting conversations with family caregivers of patients with life-threatening illnesses cared for in specialised home care. REPORTING METHOD: Reporting of the study follows the Consolidated Criteria For Reporting Qualitative Research (COREQ) checklist (File S1). PATIENT OR PUBLIC CONTRIBUTION: Participating nurses were involved in discussing the study design.

Process, content, and experiences of delivering the Carer Support Needs Assessment Tool Intervention (CSNAT-I) in the Danish specialised palliative care setting.

PURPOSE: The Carer Support Needs Assessment Tool Intervention (CSNAT-I) has shown positive effects in the Danish specialised palliative care (SPC) setting. Here, we explore the process, content, and experiences of delivering the CSNAT-I. METHODS: Data were collected during a stepped wedge cluster randomised controlled trial investigating the impact of the CSNAT-I in the Danish SPC setting in 2018-2019. Data were obtained from the CSNAT (tool) completed by caregivers, from health care professionals' (HCPs') written documentation of the CSNAT-I, and from semi-structured interviews with HCPs. RESULTS: The study population consisted of the 130 caregivers receiving a first CSNAT-I within 13 days of study enrolment, the 93 caregivers receiving a second CSNAT-I 15-27 days after enrolment, and the 44 HCPs delivering the intervention. Top three domains of unmet caregiver support needs reported in the CSNAT-I were: "knowing what to expect in the future," "dealing with feelings and worries," and "understanding the illness." These domains together with "knowing who to contact if concerned" and "talking to the patient about the illness" were also the domains most frequently prioritised for discussion with HCPs. According to HCPs, most often support delivered directly by HCPs themselves during the actual contact (e.g., listening, advice, information) was sufficient. Overall, HCPs experienced the CSNAT-I as constructive and meaningful, and difficulties in delivering the intervention were rarely an issue. CONCLUSION: The support needs reported by caregivers confirm the relevance of the CSNAT-I. HCPs' overall experiences of the clinical feasibility and relevance of the CSNAT-I were very positive. ClinicalTrials.gov ID: NCT03466580. Date of registration: March 1, 2018.

Higher levels of unmet support needs in spouses are associated with poorer quality of life - a descriptive cross-sectional study in the context of palliative home care.

BACKGROUND: Family caregivers often report having unmet support needs when caring for someone with life-threatening illness. They are at risk for psychological distress, adverse physical symptoms and negatively affected quality of life. This study aims to explore associations between family caregivers' support needs and quality of life when caring for a spouse receiving specialized palliative home care. METHODS: A descriptive cross-sectional design was used: 114 family caregivers completed the Carer Support Needs Assessment Tool (CSNAT) and the Quality of Life in Life-Threatening Illness - Family caregiver version (QOLLTI-F) and 43 of them also answered one open-ended question on thoughts about their situation. Descriptive statistics, multiple linear regression analyses, and qualitative content analysis, were used for analyses. RESULTS: Higher levels of unmet support needs were significantly associated with poorer quality of life. All CSNAT support domains were significantly associated with one or more quality of life domains in QOLLTI-F, with the exception of the QoL domain related to distress about the patient condition. However, family caregivers described in the open-ended question that their life was disrupted by the patient's life-threatening illness and its consequences. Family caregivers reported most the need of more support concerning knowing what to expect in the future, which they also described as worries and concerns about what the illness would mean for them and the patient further on. Lowest QoL was reported in relation to the patient's condition, and the family caregiver's own physical and emotional health. CONCLUSION: With a deeper understanding of the complexities of supporting family caregivers in palliative care, healthcare professionals might help to increase family caregivers' QoL by revealing their problems and concerns. Thus, tailored support is needed.

A drive for structure: A longitudinal qualitative study of the implementation of the Carer Support Needs Assessment Tool (CSNAT) intervention during hospital discharge at end of life.

BACKGROUND: Informal carers are essential in enabling discharge home from hospital at end of life and supporting palliative patients at home, but are often ill-prepared for the role. Carers' support needs are rarely considered at discharge. If carers are less able to cope with home care, patient care may suffer and readmission may become more likely. AIM: To investigate the implementation of an evidence-based Carer Support Needs Assessment Tool (CSNAT) intervention to support carers during hospital discharge at end of life. DESIGN: Longitudinal qualitative study with thematic analysis. SETTING/PARTICIPANTS: One National Health Service Trust in England: 12 hospital practitioners, one hospital administrator and four community practitioners. We provided training in CSNAT intervention use and implementation. Practitioners delivered the intervention for 6 months. Data collection was conducted in three phases: (1) pre-implementation interviews exploring understandings, anticipated benefits and challenges of the intervention; (2) observations of team meetings and review of intervention procedures and (3) follow-up interviews exploring experiences of working with the intervention. RESULTS: Despite efforts from practitioners, implementation was challenging. Three main themes captured facilitators and barriers to implementation: (1) structure and focus within carer support; (2) the 'right' people to implement the intervention and (3) practical implementation challenges. CONCLUSIONS: Structure and focus may facilitate implementation, but the dominance of outcomes measurement and performance metrics in health systems may powerfully frame perceptions of the intervention and implementation decisions. There is uncertainty over who is best-placed or responsible for supporting carers around hospital discharge, and challenges in connecting with carers prior to discharge.

Enabling patients with advanced chronic obstructive pulmonary disease to identify and express their support needs to health care professionals: A qualitative study to develop a tool.

BACKGROUND: Patients with advanced chronic obstructive pulmonary disease have difficulty reporting their holistic support needs to health care professionals, undermining delivery of person-centred care. We lack tools that directly support patients with this. AIM: To develop an evidence-based, designed-for-purpose, tool to enable patients to directly identify and express support needs to health care professionals. DESIGN: Two-stage qualitative study. Stage 1: domains of support need were identified through a systematic review, analysis of an established qualitative dataset and patient/carer focus groups. Stage 2: draft tool developed using the identified domains of need and then refined through feedback from patients, carers and health care professionals, ensuring acceptability and suitability. SETTING/PARTICIPANTS: Stage 1 patients/carers recruited via four primary care practices and two patient support groups (East of England). Stage 2 health care professionals recruited via the Clinical Research Network and local community trust and patients/carers through two further practices and two additional support groups (East of England). In total, 57 patients, carers and health care professionals participated. RESULTS: A comprehensive set of evidence-based support domains (for example: overcoming boredom or loneliness, knowing what to expect in the future) was identified and formulated into questions. The resulting tool asks patients to consider whether they need more support in 15 broad areas. Patients, carers and clinical stakeholders broadly endorsed the tool's content and wording. CONCLUSION: The Support Needs Approach for Patients (SNAP) tool is a concise evidence-based tool designed to help patients with advanced chronic obstructive pulmonary disease identify and express their support needs to enable delivery of person-centred care.

Who cares for the carers at hospital discharge at the end of life? A qualitative study of current practice in discharge planning and the potential value of using The Carer Support Needs Assessment Tool (CSNAT) Approach.

BACKGROUND: Carer factors prevent patients achieving timely and appropriate hospital discharge. There is a lack of research into interventions to support carers at hospital discharge. AIM: To explore whether and how family carers are currently supported during patient discharge at end of life; to assess perceived benefits, acceptability and feasibility of using The Carer Support Needs Assessment Tool (CSNAT) Approach in the hospital setting to support carers. DESIGN: Qualitative. SETTING/PARTICIPANTS: Three National Health Service Trusts in England: focus groups with 40 hospital and community-based practitioners and 22 carer interviews about experiences of carer support during hospital discharge and views of The CSNAT Approach. Two workshops brought together 14 practitioners and five carers to discuss implementation issues. Framework analysis was conducted. RESULTS: Current barriers to supporting carers at hospital discharge were an organisational focus on patients' needs, what practitioners perceived as carers' often 'unrealistic expectations' of end-of-life caregiving at home and lack of awareness of patients' end-of-life situation. The CSNAT Approach was viewed as enabling carer support and addressing difficulties of discussing the realities of supporting someone at home towards end of life. Implementation in hospital required organisational considerations of practitioner workload and training. To enhance carer support, a two-stage process of assessment and support (hospital with community follow-up) was suggested using the CSNAT as a carer-held record to manage the transition. CONCLUSION: This study identifies a novel intervention, which expands the focus of discharge planning to include assessment of carers' support needs at transition, potentially preventing breakdown of care at home and patient readmissions to hospital.

The Influence of Context and Practitioner Attitudes on Implementation of Person-Centered Assessment and Support for Family Carers Within Palliative Care.

BACKGROUND: The Carer Support Needs Assessment Tool (CSNAT) intervention is an evidence-based, person-centered approach to carer assessment and support within palliative care. As such, it requires a change in practice from a practitioner- to a carer-led assessment and support process. A paucity of research has investigated factors affecting implementation of evidence-based interventions within palliative care. OBJECTIVE: To examine differences between high and low adopters of the CSNAT intervention in terms of practitioner attitudes to the intervention and organizational context. METHODS: Phase IV study of the implementation of the CSNAT intervention at scale in 36 UK palliative care services over 6 months. Survey at baseline and 6 months of practitioners at implementation sites, informed by the Promoting Action on Research Implementation in Health Services (PARIHS) Framework. Survey tools: (a) questionnaire to assess attitudes to the CSNAT intervention; (b) Alberta Context Tool (ACT) to assess organizational context. Monthly data on intervention use enabled service classification as "high" or "low" adopters. RESULTS: Surveys returned at baseline were 157/462 and at 6 months were 69/462. Compared with low adoption services, high adopters were more likely to be hospice, at home, and day services; have a higher ratio of internal facilitators to total staff numbers; and higher scores for ACT "informal interactions" denoting more discussions about care between colleagues. Both had similarly positive attitudes to the CSNAT intervention pre-implementation, but by 6 months low adoption services developed significantly more negative attitudes, while high adoption services attitudes mostly remained the same or improved. LINKING EVIDENCE TO ACTION: Implementation may be more successful for services that offer regular opportunities to use the intervention in practice, have sufficient levels of facilitators, stimulate more staff discussion, and encourage maintenance of positive motivation. Implementation of person-centered interventions needs to plan for such factors. This has informed an implementation toolkit for the CSNAT intervention.

Sharing bad news of a lung cancer diagnosis: understanding through communication privacy management theory.

BACKGROUND: The aim of this paper is to understand the process of information disclosure and privacy as patients share their news of lung cancer with significant others. METHODS: Twenty patients with lung cancer and 17 family members/friends accompanying them at diagnosis-giving completed either individual or dyad semi-structured interviews. Initial thematic analysis, then Petronio's Communication Privacy Management theory was used to inform interpretation. RESULTS: Patients described a sense of ownership of the news of their cancer and sought control of how, when and with whom it was shared. Family members expressed a need to follow the patients' rules in sharing this news, which limited their own support systems. Patients and family members had to live within the relational communication boundaries in order to maintain their trusting relationship and avoid potential disruptions. CONCLUSION: Patients as individuals are strongly interlinked with significant others, which impacts on their experience of disclosing private information. This shapes their psychological processes and outcomes impacting on their illness experience. This should be considered when developing interventions to support patients with sharing bad news. Copyright © 2015 John Wiley & Sons, Ltd.

The role of the Carer Support Needs Assessment Tool in palliative home care: A qualitative study of practitioners' perspectives of its impact and mechanisms of action.

BACKGROUND: The importance of supporting family carers is well recognised in healthcare policy. The Carer Support Needs Assessment Tool is an evidence-based, comprehensive measure of carer support needs to facilitate carer support in palliative home care. AIM: To examine practitioner perspectives of the role of the Carer Support Needs Assessment Tool intervention in palliative home care to identify its impact and mechanisms of action. DESIGN: Qualitative - practitioner accounts of implementation (interviews, focus groups, reflective audio diaries) plus researcher field notes. SETTING/PARTICIPANTS: A total of 29 staff members from two hospice home-care services - contrasting geographical locations, different service sizes and staff composition. A thematic analysis was conducted. RESULTS: Existing approaches to identification of carer needs were informal and unstructured. Practitioners expressed some concerns, pre-implementation, about negative impacts of the Carer Support Needs Assessment Tool on carers and expectations raised about support available. In contrast, post-implementation, the Carer Support Needs Assessment Tool provided positive impacts when used as part of a carer-led assessment and support process: it made support needs visible, legitimised support for carers and opened up different conversations with carers. The mechanisms of action that enabled the Carer Support Needs Assessment Tool to make a difference were creating space for the separate needs of carers, providing an opportunity for carers to express support needs and responding to carers' self-defined priorities. CONCLUSION: The Carer Support Needs Assessment Tool delivered benefits through a change in practice to an identifiable, separate assessment process for carers, facilitated by practitioners but carer-led. Used routinely with all carers, the Carer Support Needs Assessment Tool has the potential to normalise carer assessment and support, facilitate delivery of carer-identified support and enable effective targeting of resources.

Strategies designed to help healthcare professionals to recruit participants to research studies.

BACKGROUND: Identifying and approaching eligible participants for recruitment to research studies usually relies on healthcare professionals. This process is sometimes hampered by deliberate or inadvertent gatekeeping that can introduce bias into patient selection. OBJECTIVES: Our primary objective was to identify and assess the effect of strategies designed to help healthcare professionals to recruit participants to research studies. SEARCH METHODS: We performed searches on 5 January 2015 in the following electronic databases: Cochrane Methodology Register, CENTRAL, MEDLINE, EMBASE, CINAHL, British Nursing Index, PsycINFO, ASSIA and Web of Science (SSCI, SCI-EXPANDED) from 1985 onwards. We checked the reference lists of all included studies and relevant review articles and did citation tracking through Web of Science for all included studies. SELECTION CRITERIA: We selected all studies that evaluated a strategy to identify and recruit participants for research via healthcare professionals and provided pre-post comparison data on recruitment rates. DATA COLLECTION AND ANALYSIS: Two review authors independently screened search results for potential eligibility, read full papers, applied the selection criteria and extracted data. We calculated risk ratios for each study to indicate the effect of each strategy. MAIN RESULTS: Eleven studies met our eligibility criteria and all were at medium or high risk of bias. Only five studies gave the total number of participants (totalling 7372 participants). Three studies used a randomised design, with the others using pre-post comparisons. Several different strategies were investigated. Four studies examined the impact of additional visits or information for the study site, with no increases in recruitment demonstrated. Increased recruitment rates were reported in two studies that used a dedicated clinical recruiter, and five studies that introduced an automated alert system for identifying eligible participants. The studies were embedded into trials evaluating care in oncology mainly but also in emergency departments, diabetes and lower back pain. AUTHORS' CONCLUSIONS: There is no strong evidence for any single strategy to help healthcare professionals to recruit participants in research studies. Additional visits or information did not appear to increase recruitment by healthcare professionals. The most promising strategies appear to be those with a dedicated resource (e.g. a clinical recruiter or automated alert system) for identifying suitable participants that reduced the demand on healthcare professionals, but these were assessed in studies at high risk of bias.

Breaking bad news about transitions to dying: a qualitative exploration of the role of the District Nurse.

BACKGROUND: UK District Nurses have an important role in enabling a good death. Patients and families need to know the patient is approaching the dying phase, yet evidence suggests breaking bad news about the patient's transition to dying rarely happens. District Nurses spend a lot of time with patients and families during the dying phase and are ideally placed to recognise and discuss the transition to dying. AIM: To explore the role of District Nurses in breaking bad news of transition to dying. DESIGN: Qualitative focus groups. SETTING: Primary care (District Nurse service); Four National Health Service Trusts, North West England. PARTICIPANTS: A total of 40 District Nurses across the Trusts, all Registered General Nurse qualified. Median number of years as a District Nurse was 12.5. All had palliative cancer patients on their caseloads. RESULTS: District Nurses' role in breaking bad news of transition to dying was challenging, but the conversation was described as essential preparation for a good death. Four main challenges with the conversations were patients' responses to the prognosis (unawareness, denial and anger), timing the conversation, complexities of the home environment and limited preparation in this aspect of their work. CONCLUSIONS: District Nurses are with patients during their last weeks of life. While other colleagues can avoid breaking bad news of transition to dying, District Nurses have no choice if they are to provide optimal end of life care. While ideally placed to carry out this work, it is complex and they are unprepared for it. They urgently need carefully tailored training in this aspect of their work, to enable them to provide optimal end of life care.

Supporting family caregivers to identify their own needs in end-of-life care: Qualitative findings from a stepped wedge cluster trial.

INTRODUCTION: The Carer Support Needs Assessment Tool encompasses the physical, psychological, social, practical, financial, and spiritual support needs that government policies in many countries emphasize should be assessed and addressed for family caregivers during end-of-life care. AIM: To describe the experience of family caregivers of terminally ill people of the Carer Support Needs Assessment Tool intervention in home-based palliative care. METHODS: This study was conducted during 2012-2014 in Silver Chain Hospice Care Service in Western Australia. This article reports on one part of a three-part evaluation of a stepped wedge cluster trial. All 233 family caregivers receiving the Carer Support Needs Assessment Tool intervention provided feedback on their experiences via brief end-of-trial semi-structured telephone interviews. Data were subjected to a thematic analysis. RESULTS: The overwhelming majority reported finding the Carer Support Needs Assessment Tool assessment process straightforward and easy. Four key themes were identified: (1) the practicality and usefulness of the systematic assessment; (2) emotional responses to caregiver reflection; (3) validation, reassurance, and empowerment; and (4) accessing support and how this was experienced. CONCLUSION: Family caregivers appreciated the value of the Carer Support Needs Assessment Tool intervention in engaging them in conversations about their needs, priorities, and solutions. The Carer Support Needs Assessment Tool presented a simple, yet potentially effective intervention to help palliative care providers systematically assess and address family caregivers' needs. The Carer Support Needs Assessment Tool provided a formal structure to facilitate discussions with family caregivers to enable needs to be addressed. Such discussions can also inform an evidence base for the ongoing development of services for family caregivers, ensuring that new or improved services are designed to meet the explicit needs of family caregivers.

Enabling a family caregiver-led assessment of support needs in home-based palliative care: Potential translation into practice.

BACKGROUND: Systematic assessment of family caregivers' support needs and integrating these into service planning according to evidence-based research are vital to improving caregivers' outcomes and their capacity to provide care at end of life. AIM: To describe the experience with and feedback of nurses on implementing a systematic assessment of support needs with family caregivers in home-based palliative care, using the Carer Support Needs Assessment Tool. METHODS: This study was conducted during 2012-2014 in Silver Chain Hospice Care Service in Western Australia. This article reports on one part of a three-part evaluation of a stepped wedge cluster trial. Forty-four nurses who trialled the intervention with 233 family caregivers gave their feedback via surveys with closed- and open-ended questions (70.5% response rate). Analyses of quantitative and qualitative data were undertaken. RESULTS: The feedback of nurses was overwhelmingly positive in terms of perceived benefits in comparison to standard practice both from the family caregiver and service provider perspectives. Using the Carer Support Needs Assessment Tool was described by nurses as providing guidance, focus and structure to facilitate discussion with family caregivers and as identifying needs and service responses that would not otherwise have been undertaken in a timely manner. CONCLUSION: Our study has successfully addressed the call for alternatives to the professional assessment paradigm using the Carer Support Needs Assessment Tool approach as a caregiver-led intervention facilitated by health professionals. Integrating the Carer Support Needs Assessment Tool in existing practice is fundamental to achieving better caregiver outcomes.

Developing a person-centred approach to carer assessment and support.

Community nurses play an important role in providing palliative care and support for patients and carers at home. The Carer Support Needs Assessment Tool (CSNAT) provides practitioners with an evidence-based comprehensive tool to use with carers in palliative home care. As a practice tool, the CSNAT uses a person-centred approach-that is, the process of carer assessment and support is facilitated by practitioners but is carerled. In this paper, the CSNAT research team provides an overview of the development of the tool and the benefits for both carers and practitioners arising from using the CSNAT as a person-centred approach in practice. The authors outline the five stages of the CSNAT approach to assist practitioners wishing to implement the CSNAT in practice.

Development of a Carer Support Needs Assessment Tool (CSNAT) for end-of-life care practice at home: a qualitative study.

BACKGROUND: Current end-of-life care policy and guidance recognises the important contribution of family carers, recommending that their needs should be assessed to support them in their caring role. How regular carer assessment is to be achieved is unclear, particularly because there is no evidence-based tool for directly assessing carers' support needs that is suitable for use in end-of-life home care practice. AIMS: To obtain carers' perspectives of key aspects of support needed during provision of end-of-life care at home and to develop a carer support needs assessment tool suitable for use in everyday practice. DESIGN: Qualitative using focus groups and telephone interviews. Thematic analysis uses a framework approach. SETTING/PARTICIPANTS: 75 adult bereaved carers who were family members/friends of patients referred to five Hospice at Home services in the UK. RESULTS: Carers' needs fell into two distinct groupings of key support areas or 'domains': support to enable them to provide care for their relative and more direct personal support for themselves. Many aspects of supportive input were common across domains, for example, anticipatory information, explanations or being included in the care process. Therefore, the tool was designed as a screening measure, to identify support needs requiring further detailed assessment. CONCLUSIONS: The Carer Support Needs Assessment Tool (CSNAT) is an evidence-based direct measure of carers' support needs in 14 domains. It is short but comprehensive in approach and thus suitable for both end-of-life care research and practice. Further work has been undertaken to test its psychometric properties.

Early support visits by district nurses to cancer patients at home: a multi-perspective qualitative study.

BACKGROUND: Many palliative cancer patients spend much of their last year at home. In the UK, district nurses make frequent support visits to patients and carers at this time, yet surprisingly little is known about their supportive role in palliative care. Current studies are limited to district nurses' reports of practice, which offer limited insight into their content. Patients' and carers' views on district nurse support visits are largely unknown. AIM: To present findings of a multi-perspective study that explored how district nurse early support visits are both described and carried out. DESIGN: Focus groups with district nurses to explore views on the purpose of early support visits. Observation of support visits to identify how they are conducted. Patient and carer interviews to elucidate and verify district nurse data. SETTING AND PARTICIPANTS: Participants included 58 district nurses, 10 palliative care patients and nine carers from four Primary Care Trusts in contrasting urban and rural locations. RESULTS: District nurses had difficulty articulating early support visits. Observations however revealed a complex role comprising extensive physical and practical assessments, practical interventions, information giving, liaison, facilitation and referral. Patients and carers confirmed that they felt valued, reassured and supported by district nurses. CONCLUSIONS: A multi-perspective approach provided new insights into district nurse support visits. Monitoring work described appears to have additional psycho-social benefits for patients and carers. The supportive role of district nurses needs to be clearly articulated and recognised so that colleagues, patients and carers access this valuable resource for palliative care patients.

Family caregivers' experiences of discussing their needs with a nurse during specialised home care utilizing the carer support needs assessment tool intervention - A qualitative study.

PURPOSE: The Carer Support Needs Assessment Tool Intervention (CSNAT-I) was designed to help family caregivers identify, reflect upon, and express their support needs in a conversation with a health care professional and gain tailored support. The CSNAT-I has shown positive effects for both nurses and family caregivers but for more comprehensive understanding this study aims to examine family caregivers' experiences of discussing their needs with a nurse during specialised home care, utilizing the CSNAT-I. METHODS: The study used an inductive qualitative descriptive design based on framework analysis. Data was collected using individual semi-structured telephone interviews with 10 family caregivers, with a median age of 66, from four specialised home care services. RESULTS: Family caregivers appreciated having scheduled meetings with nurses utilizing the CSNAT-I which gave them an opportunity to focus on what was important to them. Family caregivers experienced that the conversations were co-created with a flexible dialogue. The conversations provided new perspectives and insights which helped in finding possible solutions. Family caregivers felt empowered by the co-created conversation and took on a more active role in involving the rest of their family to find support to themselves and the patients. CONCLUSION: The CSNAT-I can facilitate communication between family caregivers and nurses leading to adequate supportive inputs. The intervention gives family caregivers an increased opportunity to be involved in their own support, which may enhance their sense of security. According to family caregivers' experiences, CSNAT-I may be an adequate way to support family caregivers to reflect and discuss their needs.

What is the role of specialist palliative care in an acute hospital setting? A qualitative study exploring views of patients and carers.

BACKGROUND: Since the medical specialty of palliative medicine was recognized in 1988, the role of hospital specialist palliative care services has been developing, extending to patients who have a life-limiting illness but are not in the terminal phase. AIM: This qualitative study aims to explore patient and carer perspectives of the role of palliative care in the acute hospital setting, with patients not imminently dying. DESIGN: Semi-structured interviews with 12 patients and 10 carers. Data were analysed using framework analysis. SETTING/PARTICIPANTS: Patients recruited were adults who had palliative care input for symptom control or psychological support and were discharged either to general ward care or to home. The family member/friend designated as their carer was also approached to take part. RESULTS: All patients in this study were treated in an acute hospital, described as a bewildering and pressured environment of care. Initial perceptions of palliative care were varied, some interpreting referral as an indication that they were approaching the end of life. However, after palliative care input, patients and carers developed an understanding of their role which they saw as three-fold: physical symptom control, psychological support and a reliable liaison. The theme of cross-cutting interviews was that the palliative care team made time for patients, giving them a sense of value and worth. Feeling their care was a priority and being listened to made palliative care input effective. CONCLUSIONS: These findings will aid continuing development and evaluation of palliative care teams, in the domains of effectiveness as well as patient experience.