Chronic illness and critical care-A qualitative exploration of family experience and need.

People with chronic illnesses such as cancer and cardiovascular disease are living longer and often require the support of critical care services. Current health care provision means patients may be discharged home once clinically stable despite still having high care demands including social, emotional, or physical needs. Families are often required to assume caregiving roles. Research into family burden using quantitative methods has increased awareness, however, little qualitative work exists and the development of support interventions for families is required. To explore the experience and needs of family members of people with an existing chronic illness who are admitted to the Critical Care Unit (CCU), and to identify the desired components of a family support intervention in the form of a resource toolkit. A qualitative exploration of family experience and need, and content development for a resource toolkit using focus group methodology. Two focus groups and one face-to-face interview were conducted involving nine adult (≥18 years) family members of adult patients with chronic illness admitted to critical care in the preceding 9 months across two specialist hospitals in the UK. These were digitally recorded, transcribed, and thematically analysed. Four themes were identified: importance of communication, need for support, trauma of chronic illness, and having to provide "Do-it-Yourself" care. The immense responsibility of families to provide care throughout the illness trajectory is highlighted. Understandable information is essential for a family support toolkit. Family members often view a critical care episode broadly from diagnosis through to recovery/rehabilitation. Basic communication training skills within critical care should be ensured, alongside coordination of simple solutions. The potential traumatic impact on families should be highlighted early within the pathway, and positive aspects used to harness essential family support. A simple and coordinated approach to a toolkit is preferred. This study highlights that a critical care experience may impact broadly beyond CCU, and the importance of informing patients and families of this potential experience, prior to or on admission, to aid preparation. Further highlighted is the need for contemporaneous and accurate information from clinicians involved in care. Families report a better experience when there is good collaboration across critical care services and admitting clinical teams. Early involvement of families in overall discharge planning is essential to allow patients and families to adjust and plan for recovery.

O'Gara G ，Wiseman T ，Doyle AM ，Pattison N ... -  《-》

Palliative care experiences of adult cancer patients from ethnocultural groups: a qualitative systematic review protocol.

Busolo D ，Woodgate R 《-》

Changing support needs of survivors of complex critical illness and their family caregivers across the care continuum: a qualitative pilot study of Towards RECOVER.

Survivors of complex critical illness and their family caregivers require support during their recovery, rehabilitation, and return to community living; however, the nature of these supports and how they may change over time remain unclear. Using the Timing It Right framework as a conceptual guide, this qualitative pilot study explored survivors' and caregivers' needs during the episode of critical illness through their return to independent living. Five survivors and seven family caregivers were recruited and consented from the main Towards RECOVER pilot study, designed to characterize the long term outcomes of survivors of the ICU who have been mechanically ventilated for more than one week. Using the Timing It Right framework, we prospectively conducted qualitative interviews to explore participants' experiences and needs for information, emotional support, and training at 3, 6, 12, and 24 months after intensive care unit (ICU) discharge. We completed 26 interviews, which were audio recorded, professionally transcribed, checked for accuracy, and analyzed using framework methodology. In this small pilot sample, caregiver and patient perspectives were related and, therefore, are presented together. We identified 1 overriding theme: survivors do not experience continuity of medical care during recovery after critical illness. Three subthemes highlighted the following: (1) informational needs change across the care continuum, (2) fear and worry exist when families do not know what to expect, and (3) survivors transition from dependence to independence. Interventions designed to improve family outcomes after critical illness should address both survivors' and caregivers' support needs as they change across the illness and recovery trajectory. Providing early intervention and support and clarifying expectations for transitions in care and recovery may decrease fears of the unknown for both caregivers and survivors. Ongoing family-centered follow-up programs may also help survivors regain independence and help caregivers manage their perceived responsibility for the patients' health. Using these insights for intervention development could ultimately improve long-term outcomes for both survivors and caregivers.

Czerwonka AI ，Herridge MS ，Chan L ，Chu LM ，Matte A ，Cameron JI ... -  《-》

Promoting and supporting self-management for adults living in the community with physical chronic illness: A systematic review of the effectiveness and meaningfulness of the patient-practitioner encounter.

There has been a reported rise in the number of people with chronic illness (also referred to as long-term disease) in the Western world. One hundred million people in the United States have at least one chronic condition and in the United Kingdom (UK) as many as 17.5 million adults may be living with chronic disease. New models of care have been developed which recognise the complexities of managing care where there is overlap between the wider community, the health care system and provider organisations, for example, the Chronic Care Model and the Expert Patient Programme. These new models herald a shift away from the idea of chronically ill patients as passive recipients of care towards active engagement, in partnership with health professionals, in managing their own care.Partnership, ideally, involves collaborative care and self-management education. This may support self-care alongside medical, preventative and health maintenance interventions. In this context the nature of the patient-practitioner consultation in promoting self-care takes on a new importance. The overall objective of the review was to determine the best available evidence regarding the promotion and support of self-care management for adults living in the community with chronic illness during the patient-practitioner encounter. Specifically the review sought to determine: What is the effectiveness of the patient-practitioner encounter in promoting and supporting self-care management of people with chronic illness? What are the individual and organisational factors which help or hinder recognition, promotion and support of chronic disease self-care management strategies? What are the similarities and differences between how 'effectiveness' is defined in this context by patients and different practitioners? The review focussed on self-caring adults aged nineteen years and older living in the community, with a physical chronic illness, and not currently being treated as an in-patient. For example, people with diabetes, asthma, arthritis, coronary disease, lung disease, heart failure, epilepsy, kidney disease and inflammatory bowel disease. Since patients meet various professionals in a variety of community settings regarding their care, a practitioner in this review included doctors (physicians and General Practitioners), nurses, nurse specialists, dieticians, podiatrists and community health workers.A variety of outcomes measures was used to evaluate effective self-care management. These included physiological measurements such as: HbA1c, blood pressure, body weight, lipids; lifestyle measurements, for example physical activity; and self-care determinants such as knowledge, attitude; and self-care behaviours regarding, for example, diet and physical exercise, and medication. The outcome measures used to explore the meaningfulness of the patient-practitioner encounter, concerned patients', physicians' and nurses' views and perceptions of self-care management and support.The review considered all types of quantitative and qualitative evidence regarding the patient-practitioner encounter where self-care in chronic illness was the focus. The quantitative studies reviewed included systematic reviews, randomised controlled trials (RCTs), quasi-experimental studies, and survey studies.Qualitative studies reviewed included interview designs, vignette technique, qualitative evaluation, grounded theory, and exploratory descriptive design. The search sought to find both published and unpublished studies between 1990 and 2005. The year 1990 was deemed appropriate since it precedes the development of the Chronic Care Model in which self-management support for people living with chronic illness is heralded as an important part of care-management. An initial search of CINAHL and MEDLINE databases was undertaken to identify appropriate search terms regarding self-care and chronic illness. A search strategy was then developed using all identified MeSH headings and key words and the following databases were searched: - Ovid CINAHL; Ovid MEDLINE (R); Ovid EMBASE; Ovid EBM Reviews (CDSR, ACP Journal Club, DARE, CCTR); ASSIA; SIGLE; Digital Dissertations; and British Library's Zetoc Services. Thirty-two papers were considered applicable to the review topic from the title and abstract. Two reviewers used the appropriate critical appraisal instruments designed by the Joanna Briggs Institute (JBI) to assess methodological quality of papers retrieved for review, and agreed on the papers for inclusion. A total of 18 papers reporting 16 studies were included in the review (3 papers reported from the same study): 12 quantitative studies, 5 qualitative studies and 1 study using mixed methods. These papers were heterogeneous in nature, diverse in subject matter and considered a wide range of physiological, psychological, sociological and behavioural self-care outcome measures. Data were extracted by the two independent reviewers using a variety of data extraction instruments developed by JBI. The heterogeneous nature of the quantitative studies prevented meta-analysis and so these studies are presented in narrative summary. Meta-synthesis of the qualitative data was performed for the six qualitative pieces following the process of meta-synthesis set out in the JBI-QARI software package. The process of meta-synthesis embodied in this programme involves the aggregation or synthesis of findings. Seven syntheses were produced from fifty findings. For effective patient-centeredness to be established patients should be able to discuss their own ideas about self-care actions, including lifestyle management in an unhurried fashion and with a practitioner who has the time and who is willing to listen. Patient-centred interventions aimed at providers such as patient-centred training and patient-centred materials were shown to have a positive effect on the patient-centeredness of an encounter, but their effect on self-care outcomes was not clear. Interventions directed at enhancing patient participation in the encounter were shown to effect diabetes self-care and self-behaviour.Nurses were shown to have an effective role in educating patients and facilitating adherence to treatment. Patients found nurses approachable and some studies showed that when given the choice, patients were more likely to contact a nurse (than a doctor) regarding their care.Professional interventions such as education, and organisational interventions such as management of regular review and follow up, were shown to improve process outcomes in the management of a patient-practitioner encounter. When patient-orientated interventions were added to professional and organisational interventions, in which patient education and / or the role of the nurse was enhanced, patient health outcomes were improved.The different patient-orientated interventions reviewed highlighted some of the elements that can effectively support self-care management during a patient-practitioner encounter. These are information giving, including the use of a guidebook, the use of care plans, the structure of treatment using checklists, and education and support for staff in 'collaboratives'.Comprehensive, well-paced, user-friendly information is effective in supporting and promoting self-care management in a variety of ways. It informs and reassures patients and their families. It can be used during a doctor/patient consultation to assist communication between doctors and patients, and may help patients feel more involved in their care.For information to effect self-care management, it is important that it is given at diagnosis and from then onwards so that the implications of good self-care management in relation to long term health outcomes are established.Care plans and self-management plans can be useful in facilitating patients' discussion of self-care actions and lifestyle management.Organisational factors affect opportunities for professionals to support patient self-care management. These include time, resources, the existing configuration and expectations of a consultation, the opportunity for open access to appointments, the ability to see the same doctor and early referral to other professional groups.Correlational design studies indicated that individual psychological factors, such as attachment style and autonomy support given to a patient during a patient-practitioner encounter, have a relationship to self-care behaviours and outcomes.Correlational design studies indicated that both general communication and diabetic specific communication used during a patient-practitioner encounter have a positive effect on patient self-care management and outcomes for patients with diabetes.Consultations about self-care for patients with chronic illness tend to be medically focussed and do not always include discussion of patients' views of the routines and self-care actions. This can lead to tension and unresolved issues between the patient and professional.Studies in the context of diabetes self-management reveal that professionals can effectively support patients in a number of ways. These include assisting the orientation of patients towards skills and competencies needed for self-care; sharing knowledge and information; endorsing the patient's view that he or she is the most reliable and accurate source of information about his or her physiological function; trusting the patients' interpretations of their physiological function, and modifying advice in response to patients in accordance with their bodily cues and experiences. The nature of the patient-practitioner encounter is multifaceted involving patient, professional and organisational factors. Patient-orientated interventions are the most effective in effecting positive self-care behavioural and health outcomes. Patient participation in the patient-practitioner encounter is a key factor in influencing self-care outcomes. Patients' self-care management involves social as well as medical management. Professionals need to recognise and value patients' views and experiences in order to support their self-care management. Patients need information at diagnosis and from then onwards to enable good self-care management. It is important to enable patient participation during the patient-practitioner encounter.For patients' self-care needs to be addressed opportunities for patients to talk about their diet, routines and lifestyle management need to be incorporated into the encounter. Extra time in consultations may be required. Care plans can help to facilitate this discussion.To support patients with their self-care management, both sharing of medical and nursing knowledge, and recognition of the value of patient's knowledge and experiences are vital.Nurses relate well to patients who want to discuss self-care management.Professional interventions and organisational interventions can improve the management of a patient-practitioner encounter. Patient-orientated interventions in addition to good management of the encounter can improve health care outcomes. Patient focussed interventions have a positive effect on patient self-care outcomes. Further research regarding patients' self-care and health outcomes and behaviours is needed to establish which patient focussed interventions in particular are effective.Qualitative research has proved to be important in understanding the different ways that professionals and patients approach self-care management during an encounter. More qualitative research would assist an understanding of the processes that inspire effective partnership between patients and professionals to support the establishment of self-care management of chronic illness.

Rees S ，Williams A 《-》

The expressed support needs of families of adults who have survived critical illness: A thematic synthesis.

Surviving critical illness can result in ongoing psychological, physical and cognitive impairments for both survivors and families. During the time from the critical illness through to the period of adaptation back to community living, families, alongside survivors, have support needs. This systematic review aimed to provide an in-depth insight into the expressed support needs of families of adults who survived an admission to an intensive care unit and returned to a home environment. It also aimed to explore how these needs change over time, and what support provisions families perceived to be helpful. This was a systematic review using thematic synthesis methodology. Predefined searches were conducted in CINAHL, Medline, PsychINFO, SocIndex, EMbase, Academic Search Complete, EThOS and OpenGrey to locate studies published in English from 2000. Two reviewers screened each study against the inclusion criteria. Quality appraisal was undertaken using Joanna Briggs Institute tools. Extracted data were managed in Nvivo12® and analysed to identify descriptive and analytical themes. The Timing it Right Framework was used to frame changes in need across the recovery continuum. Thirty-nine studies were included, 30 qualitative, eight quantitative and one mixed methods. Five key family needs were identified across the recovery continuum: for security; to make sense of the situation; finding a balance; holding everything together; and for trust. Families found the following interventions helpful: written information; care coordination and navigation; input from intensive care staff after discharge to support continuity; and provision of family support groups. Although there are similarities between the needs of families and survivors, there are sufficient differences to warrant the development of processes to identify and address family need throughout the recovery continuum. More research is required to develop a tool to better identify the needs of families across the recovery continuum, identify gaps in current service provision, and design interventions to meet these needs. CRD42019136883 (PROSPERO).

Millward K ，McGraw C ，Aitken LM 《-》