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Table 3 Detailed Overview of the studies included in the review

From: Needs and preferences of informal caregivers regarding outpatient care for the elderly: a systematic literature review

Categories Author (Year) Country Aim Data Collection Methods Findings
Preferences regarding Long-Term-Care (LTC)
Choice of LTC-Arrangements
  Wang et al. (2004) [14] Taiwan Examination of the preferences of the elderly and their primary family caregivers regarding LTC arrangements. Questionnaires Home care is the most preferred LTC arrangement (Home care > institutional care > community based care).
McCann (1988) [13] USA Understanding LTC from the perspective of elderly caregivers, comparison of this perspective with that of nurses and physicians who work with older caregivers and their patients, and learning how nurses and physicians can best address the needs of older caregivers. Focus groups Making decisions about home care, the nature of long term home care, and caregivers’ concerns and needs. In general, most spouses want to provide home care for their partners but are often discouraged from doing so by their children and/or by health professionals. Caregivers receive little support in preparation for their roles, and most have little or no contact with the formal health care system.
Aspects for LTC/ Later life care (LLC) at home
  Denson et al. (2013) [28] Australia Comparison of the opinions and values of frail elders living at home, younger relatives, and health professionals experienced in discharge-planning, prospectively: Before, not after, an LTC decision. Interviews (semi-structured and open-ended questions) Safety/ security; personal (psychological) value of living at home; finances, health; mental and physical abilities; psychological well-being; autonomy, caregiver burden; best interests of the elder; better functioning at home, self-responsibility of the elder, planning.
Stolee et al. (2014) [29] Canada Understanding of views and experiences on later life care (LLC) planning conversations, in terms of (a) respective roles, and (b) barriers and facilitators that should be taken into account when having these conversations. Interviews (semi-structured) Effective LLC conversations need to be positive, respectful, and be guided by concerns for the older adult’s well-being.
Characteristics of Community Directed Care (CDC)
  McCaffrey et al. (2015) [78] Australia Determining features (attributes) of consumer-directed, home-based support services that are important to older individuals and their informal caregivers to inform the design of a discrete choice experiment (DCE). Interviews (semi-structured) The following were Important service characteristics for users: information, choice and control, effective co-ordination and communication, responsiveness and flexibility, and continuity and planning.
Needs within the organization of long term care
Structural and organizational needs
Work-life-Balance/ self-care/ Stress management
  Eldh et al. (2011) [31] Sweden Elucidation of the experience of providing informal care to an ageing parent while managing the responsibilities of a working life. Interviews (narrative) Providing informal care while working implies seeking a balance between providing support to the parent’s needs and one’s responsibilities at work; possibility for balance by sharing responsibility with others; and the need for frequent and regular dialogue between the managers and the caregivers as employees, on what was currently the most effective arrangements for the workplace and as co-workers.
Mastel-Smith et al. (2012) [79] USA Exploration of caregivers’ educational needs and preferred methods of information delivery. Focus groups The need to learn how to balance caregiving and other responsibilities, and care for themselves; respite for time for themselves as a mean of self-care; and the need to be flexible.
Yedidia et al. (2008) [74] USA Elicitation of views of family caregivers regarding expected kinds of assistance from nurses and social workers. Focus groups Stress management and coping strategies regarding recognizing and addressing burnout, finding support groups, and accessing a crisis hotline.
Respite
Need for respite
  Jorgensen et al. (2010) [30] New Zealand Reporting the unmet needs. Telephone interview (scales and open-ended questions) Need for flexible and reliable respite provision.
Mackenzie et al. (1996) [32] China Gaining personal accounts of experiences of primary caregivers caring for dependent family members. Interviews (semi-structured) Short-term respite in an acceptable and appropriate form.
Feinberg et al. (1999)[50] USA Examination of the preferences for and characteristics of consumer-directed (i.e., direct pay) and professionally-managed care (i.e., agency-based) respite for family caregivers of adults with cognitive impairments. Questionnaires (closed questions and one
open-ended question)
Prefer consumer-directed mode (i.e., direct pay) over agency-based in-home respite.
Eldh et al. (2011) [31] Sweden Elucidation of the experience of providing informal care to an ageing parent while managing the responsibilities of a working life. Interviews (narrative) Wish for a break from the task of providing support for the ageing parent due to the difficulties of being an informal caregiver and being employed; need for setting one’s own limits.
Mastel-Smith et al. (2012) [79] USA Exploration of caregivers’ educational needs and preferred methods of information delivery. Focus groups Need for respite; respite included the need for professional care, family support and other issues; professional caregivers are difficult to find and unreliable.
McCann (2002) [15] Ireland Identification of the views of individuals receiving care (informal caregivers were also interviewed). Interviewsa Need for short-term respite care.
Lane et al. (2003) [55] Ireland Exploration of the perceived health and social care needs of family caregivers of older individuals (including mentally infirm individuals) and exploration of their experience of home care. Interviews (semi-structured) Inadequacy of statutory respite services and other services.
Aspects affecting the acceptance of respite
  Greenwood et al. (2012) [33] UK Investigation of caregivers’ experiences with, or their perceptions of care workers with respite. Interviews (semi-structured) To accept or to use respite trust in the service provider and the individual care worker are very important. The care-recipient must be comfortable and able to communicate well with the care worker; the care worker’s sensitivity to the caregiver’s and care-recipient’s needs and circumstances is an additional important element; they must also be able to respond to any changes in the care-recipient’s condition or mood.
  Lund et al. (2014) [35] USA Examining the intervention Time for Living and Caring (TLC) in terms of feasibility and potential benefits, and how caregivers viewed their participation. Surveya including scales and open-ended comments (1) Weekly or bi-weekly intervention formats were accepted by caregivers.
(2) Respite leads to a slight improvement with satisfaction with respite time-use and a slight reduction in burden levels, but no notable changes in satisfaction with caregiving;
(3) The participating caregivers recognized the benefits of identifying, in advance, how they wanted to spend their respite time and setting specific goals, which helped empower them to act on their preferences.
  Stirling et al. (2014) [34] Australia Assessment of caregiver’s expectations and perceptions of adult day respite services and their commitment to using services. Interview/survey including rating scales and open-ended questions Respite decisions depends on the experience and benefits of the care-recipient: (1) want good care; (2) enjoyable experience for the care-recipient; other themes: “want a break.” cost reduction of respite services, and longer opening times for respite services.
Information needs
Need for information
  Criel et al. (2014) [36] Belgium Identification of the specific needs of the informal caregiver. Interviews (semi-structured) Information about existing services
Jorgensen et al. (2010) [30] New Zealand Reporting of the unmet needs Telephone interview (scales and open-ended questions) Need for accessible, up-to-date timely information to assess services and support; one national place for accessing information.
Abu Bakar et al. (2014) [41] Malaysia Examination of Malaysian efforts in assisting informal caregivers, based on an analysis of the issues and concerns raised by the caregivers themselves. Interviews (structured) Information in solving specific care-giving concerns.
Hirakawaa et al. (2011) [40] Japan Analyzing the priority information needs and sources of family caregivers of home elderly patients. Questionnaires Need for information on the public long-term care insurance service (home and institutional care services), and about food and nutrition.
Mackenzie et al. (1996) [32] China Gaining personal accounts of experiences of primary caregivers caring for dependent family members. Interviews (semi-structured) Information about rehabilitation and health promoting activities related to emotional, psychological, and physical health; information about sources of community help.
Zabalegui et al. (2008) [80] Spain Better understanding of informal caregivers’ view, particularly about the resources that are available to them, or should be available to them. Focus groups Need for information and training (on the process of the illness, the care of the dependent person, and the care of the caregivers themselves, in connection to physical, psychological, and social tasks).
Zeng et al. (2014) [37] China Exploration of the experience of seniors’ family caregivers with regarding the responsibility, burden and support needs during caregiving in Shanghai, China. Interviews (semi-structured) Need for information due to the lack of clear information on support services.
  Stockwell-Smith et al. (2010) [38] Australia Exploration of the limiting and motivating factors that influence caregivers’ use of respite services and the ability of currently available respite services to meet the needs of caregivers of frail older individuals. Focus groups Information need due to the lack of accurate information on community service structures for aged care and formal support services.
  Wilde et al. (2012) [73] UK Identification of experiences of home-care reablement service users and their caregivers. Interviews (semi-structured) Need for information regarding reablement services (initially and during the reablement).
  Mastel-Smith et al. (2012) [79] USA Exploration of caregivers’ educational needs and preferred methods of information delivery. Focus groups Need for information on practical aspects of care or caregiving essentials (safety issues regarding the use of mobility aids and other equipment, safe transfer and positioning techniques, and fall prevention); need for disease-specific information; need for information about death and dying, and specifically the prolongation of life and the signs and symptoms of impending death.
  Nickel et al. (2011) [75] Germany Exploration of information needs of care-recipients as well as their relatives. Questionnaire (semi-structured) to document consultation conversations Need for information on (1) the health care system, (2) individual access options in the health care system, (3) regional service providers, (4) situation and disease-specific aspects.
  Stolee et al. (2014) [29] Canada Understanding of views and experiences on LLC planning conversations in terms of (a) respective roles, and (b) barriers and facilitators that should be taken into account when having these conversations. Interviews (semi-structured) Desire for information and comfortable mobilizing health care providers in LLC conversations with their care-recipients; information is necessary for making informed choices; useful information types for family members include legal advice, communication strategies, changing roles in their relationship with an older adult, community services and resources, helpful websites, and modifications. These allow their family member to live at home as long as possible.
  Lane et al. (2003) [55] Ireland Exploration of the perceived health and social care needs of family caregivers of older individuals (including mentally infirm individuals) and exploration of their experience of home care. Interviews (semi-structured) Frustration and hopelessness due to the lack of information
  Yedidia et al. (2008) [74] USA Elicitation of views of family caregivers regarding expected kinds of assistance from nurses and social workers. Focus groups Information about available services (daytime activities for care recipients, residential facilities, disease-specific services and care coordination); information about drugs.
Information sharing
  Crotty et al. (2015) [39] Israel Identification of how patients older than 75 years and family caregivers of such patients approach sharing of health information, with the hope of applying the results to the development of collaborative patient portals. Group discussions Having information would decrease stress; need to acquire information that would help their parent; systems such as patient portals would help assuage some of the stress of caregiving; wish to have access to their elderly parents’ medical records to be able to better coordinate care, appointments, and communication with the family; knowing the activities of the elders; coordinate care for their parents while respecting their preferences and preserving their sense of autonomy.
LaVela et al. (2016) [81] USA Examination and comparison of caregiver perceptions of family centered care by age. Questionnaire containing closed- and open-ended questions Want to be informed at different points before, during, and after the patient’s encounters, each representing times at which caregivers need to feel informed and need support; information sharing should be a mutual effort between the caregiver and care provider; younger caregivers require health providers to acknowledge and understand their level of involvement and commitment.
Professional counselling/advices/educational needs
  Hirakawa et al. (2011) [40] Japan Analyzing the priority information needs and sources of family caregivers of home elderly patients. Questionnaires Educational need for customer-related issues (problems with customer products and contracts)
Abu Bakar et al. (2014) [41] Malaysia Examination of Malaysian efforts in assisting informal caregivers, based on an analysis of the issues and concerns raised by the caregivers themselves. Interviews (structured) Professional counselling and advice from others with similar care-giving-problems
Fernandes et al. (2013) [27] Hawaii Developing and testing a family caregiver training program for Palau in two phases: (1) assessing needs by interviewing key informants and surveying elders and (2) evaluating the caregiver training program that was designed based on findings from the assessment. Interviews (n/s) Areas of priority include the need for patient education and training; future training topics include caregiver and family education, wound care, and pain and symptom management
Van Houtven et al. (2010) [72] USA Exploration of the preferences regarding home and community-based services or home-based primary care, (including: quantity and types of tasks provided and desired content for caregiver training programs) Questionnaires Interested in participation of caregiver training, especially through (1) phone-based programs (47%) and (2) training at Veterans Affairs.
Lane et al. (2003) [55] Ireland Exploration of the perceived health and social care needs of family caregivers of older individuals (including mentally infirm individuals) and exploration of their experience of home care. Interviews (semi-structured) Lack of training for caregivers in relation to lifting and handling skills and a lack of monitoring and support caregivers (in cases of introduction of new or altered medication); the need for clearly systematic caregiver-oriented approaches to tracking, assessment, planning, intervention, and evaluation processes is integral to the strategic development of proactive service plans.
Yedidia et al. (2008) [74] USA Elicitation of views of family caregivers regarding expected kinds of assistance from nurses and social workers. Focus groups Learning care tasks (training for bathing and moving, positioning diapers, inserting catheters, using medical equipment, and tailoring care procedures to particular situations); legal advices (negotiating resuscitation preferences and advance directives, and understanding laws applicable to guardianship).
Support needs
Need for support
Type of support
  Rodger et al. (2015) [82] Ireland Exploration of the experiences of informal caregivers in Ireland and identification the required support in caring for older adults at home. Interviews (unstructured) The majority of informal caregiver have inconsistent or no support in caregiving; the following themes emerged: “time is not your own,” duty of care, burden of caring, and support for informal caregivers.
  Lane et al. (2003) [55] Ireland Exploration of the perceived health and social care needs of family caregivers of older individuals (including mentally infirm individuals) and exploration of their experience of home care. Interviews (semi-structured) Need to support the caregiver’s role.
Zeng et al. (2014) [37] China Exploration of the experience of seniors’ family caregivers with regarding the responsibility, burden, and support needs during caregiving in Shanghai, China. Interviews (semi-structured) Caregivers stated that some support services are limited and/or not accessible; there are gaps in caregiver support service; feel sustained mental and emotional confusion and no freedom anymore.
Stockewell-Smith et al. (2010) [38] Australia Exploration of the limiting and motivating factors that influence caregivers’ use of respite services and the ability of currently available respite services to meet the needs of caregivers of frail older individuals. Focus groups Selective accepting of assistance; majority of participants accepted the need for assistance but had concerns in terms of trust and quality of support; consistency of formal care services was valued highly.
Van Dijk et al. (2013) [42] Netherlands Exploration of (i) types of informal neighbor support and (ii) experiences of neighbors, volunteers, and professionals providing support. Interviews (narrative) Need for professional support for neighbors: providing social monitoring and emotional support; fear of disadvantages and preferred to limit contact.
Mackenzie et al. (1996) [32] China Gaining personal accounts of experiences of primary caregivers caring for dependent family members. Interviews (semi-structured) Help in kind (help with tasks on a regular and acceptable basis); adopt of and providing equipment in home for the caring situation.
Zabalegui et al. (2008) [80] Spain Better understanding of informal caregivers’ view, particularly about the resources that are or should be available to them. Focus groups Preference of support resources: family group and informal networks are the most helpful and available non-formal resources; want the physician to play a greater role (dedicating more time, having greater tact, etc.), need help for excessive workload and the solitude they suffer as a caregiver; need for physical aids and adaptations; home renovations and help with transport.
Abu Bakar et al. (2014) [41] Malaysia Examination of Malaysian efforts in assisting informal caregivers, based on an analysis of the issues and concerns raised by the caregivers themselves. Interviews (structured) Need of help in solving specific care-giving concerns
Fernandes et al. (2013)[27] Hawaii Developing and test a family caregiver training program for Palau in two phases: (1) assessing needs by interviewing key informants and surveying elders and (2) evaluating the caregiver training program that was designed based on findings from the assessment. Interviewsa Access to medication
McCann et al. (2002) [15] Ireland Identification of the views of individuals receiving care (informal caregivers were also interviewed) Interviewsa One-third of the participants expressed the need for more frequent visits from health professionals (e.g., public nurses).
Browne et al. (2014) [26] USA Investigation of health and care preferences that offer the potential for improving well-being in later life for Native Hawaiian elders. Focus groups Preferred services: (1) use of community services (when one became familiar through a neighbor or friend); (2) agency personnel (who were culturally informed, professional staff who conducted home visits, services that were affordable and organizations whose policies and procedures were respectful and not intrusive, referred helpers were nurses or social workers, referred respite, family education and support and transportation, more health and prevention programs).
Yedidia et al. (2008) [74] USA Elicitation of views of family caregivers regarding expected kinds of assistance from nurses and social workers. Focus groups Communication with professionals (coordination professional help across care sites, collaboration with professionals providing care and finding of compassionate providers); help in recruiting competent help (assistance with checking on qualifications and references and matching available expertise to the needs of the care recipient).
McCann (1988) [13] USA Understanding long term caregiving from the perspective of elderly caregivers, comparison of this perspective with that of nurses and physicians who work with older caregivers and their patients, and learning how nurses and physicians can best address the needs of older caregivers. Focus groups Caregivers need more contact with health professionals, and opportunities to share concerns and needs with health professionals.
  Van Kempen et al. (2012) [83] Netherlands Exploration of the views and needs of community-dwelling frail older individuals concerning home visits. Interviews (semi-structured) Need for home visits of general practitioners; preferences in home visits are the psychosocial context, continuity in professionals, and the patient–professional relationship.
Emotional/ psychological/social support
  Long et al. (2009) [44] Japan Comparison of two groups regarding how they became the caregiver, their use of long-term care services and the difficulties, and positive outcomes of caregiving they have experienced. Interviews Need for psychological services (counsellors, support groups, etc.)
Criel et al. (2014) [36] Belgium Establishment of a better picture of the various needs of the elderly in their home situation, and a better understanding of the way in which informal care is provided. Interviews (semi-structured) Emotional support regarding several problems (emotional, psychological and physically stress as well as practical and organizational problems).
Milligan et al. (2016) [70] UK Gaining a clearer understanding of how (or if) gender plays a part in shaping the forms of formal care support extended to males. Narrative correspondence: written stories “Felt a real need and desire to have someone to talk to about the issues, but for this to be delivered through professional services (such as a mental health worker or counselling service).”
Wailing et al. (1997) [43] USA Investigation of whether different dimensions of social support affect mental health via different mechanisms and whether the context in which the support is needed and received will temper its effects. Interviews (structured questionnaires) Need for social support in caregiving (to buffer the effects of stress).
Yedidia et al. (2008) [74] USA Elicitation of views of family caregivers regarding expected kinds of assistance from nurses and social workers. Focus groups Addressing end-of-life issues, moving the recipient to a facility and dealing with the family.
Financial assistance
  Jorgensen et al. (2010) [30] New Zealand Reporting the unmet needs. Telephone interview (scales and open-ended questions) Need for appropriate financial support.
Abu Bakar et al. (2014) [41] Malaysia Examination of Malaysian efforts in assisting informal caregivers based on an analysis of the issues and concerns raised by the caregivers themselves. Interviews (structured) Financial help with medical costs.
Mackenzie et al. (1996) [32] China Gaining personal accounts of experiences of primary caregivers caring for dependent family members. Interviews (semi-structured) Financial help to cover extra costs incurred owing to disability.
Zabalegui et al. (2008) [80] Spain Better understanding of informal caregivers’ view, particularly about the resources that are or should be available to them. Focus groups Need for economic support.
Zeng et al. (2014) [37] China Exploration of the experience of seniors’ family caregivers with regarding the responsibility, burden and support needs during caregiving in Shanghai, China. Interviews (semi-structured) Caregivers indicate high economic pressure.
Yedidia et al. (2008) [74] USA Elicitation of views of family caregivers regarding expected kinds of assistance from nurses and social workers. Focus groups Assistance with financial issues and insurance coverage (locating sources of aid for various income groups, understanding eligibility rules, making health plan decisions, and long-term financing).
Support systems
Design/features/requirements of (web-based) support systems/ web-based Apps
  Andersson et al. (2017) [84] Sweden Exploration of the perceived benefits and challenges with web-based information and communication technologies as a means of supporting working caregivers to fulfill their caregiving role. In-Depth interviews (semi-structured) Features of an family-based support network: (1) Support hub for connecting with peers, personnel, and knowledge; emotional support, knowledge bank, and information sources; (2) Experiencing ICT support as relevant in changing life circumstances: links between accessibility, usability and flexibility in support [availability according the caregiver’s life situation (working life and caregiving)]; (3) Upholding one’s personal firewall: utilization is connected to issues of IT security, keeping private matters private in protection of one’s integrity, and ability to feel comfortable in using the system.
  Barbabella et al. (2016) [85] Italy, Sweden, Germany Caregivers’ psychological well-being, perceived negative and positive aspects of caregiving, and social support received were assessed before and after the 3-month intervention. Questionnaires and focus groups Online social support, role awareness, caregiving activities, psychological well-being, and technical concerns. The analysis suggested that the intervention was useful and appropriate, and it improved self-efficacy and the reappraisal of the caregiver’s role.
e-health support
  Blusi et al. (2014) [45] Sweden Investigation of whether caregiver support provided as an e-health service could benefit older family caregivers in rural areas, as compared with conventional non-e-health based support. Interviews (semi-structured) Flexibility (choosing suitable information; deciding the time of support, matching support activities with current needs) and availability (always someone to ask, accessible at odd hours, on demand) of the systems are essential to meet the caregivers’ needs.
Shah et al. (2012) [46] USA Documentation of the experiences of patients, their caregivers, healthcare personnel, and staff members with a program that provides telemedicine-enhanced emergency care to older adults residing in senior living communities (SLCs) and to delineate perceived barriers and facilitators. Interviews (semi-structured) Telemedicine program eliminates the need to travel to the emergency departments; provision of care immediately.
Williamson et al. (2014) [86] USA Assessing the information and technology needs of Long Distance Caregivers (LDC). Interviews (semi-structured) Requirements or design of an App for LDC: Information regarding medication regimens and adherence, calendaring, and cognitive health were most needed. Participants also described needs for video calling, activity data regarding sleep and physical exercise, asynchronous communication, photo sharing, journaling, access to online health resources, real-time monitoring, an overall summary of health, and feedback/suggestions to help them improve as caregivers. In addition, all respondents estimated their usage of a LDC health management website would be at least once per week, with half indicating a desire to access the website from a smartphone.
In-home-monitoring
  Wild et al. (2008) [47] USA Identifying of monitoring needs and expectations of community-residing elderly and their family member. Focus groups Maintaining independence in the home (identifying and responding to immediate needs (e.g., falls); monitoring to detect cognitive decline over time; sharing information with the physician; trade-off between privacy and usefulness: usefulness regarding safety, maintaining independence and health was valued more as compared to privacy).
Robots
Requirements
  Bedaf et al. (2016) [57] Netherlands/ UK/ France Assessment of the acceptability of robots of elderly individuals. Focus groups Autonomy (stay in control of the own life), Agreement (acceptability of a robot), Reminders (medication, motivation for physically activity), Behavior modification (promoting health-promoting behavior), Safety (should keep the user safe), Privacy (robots sharing data with the care team; seen as an extension of the care team), Independence (passive or obedient robot undermine the independence of the user in long term).
Tasks
  Pigini et al. (2012) [87] Spain Aiming to generate user requirements and realistic usage scenarios maximizing the alignment with users’ needs, perceptions, feelings and rights of service robots in elderly care at home. Focus groups and questionnaire Tasks: monitoring and managing emergency situations, helping with reaching, fetching and carrying objects; using robots in direct physical contact is not appreciated.
Pino et al. (2015) [88] France Investigation of acceptance of socially assistive robots among older adults living in the community. Questionnaire and focus groups Services and functionalities were: (a) cognitive support applications to compensate cognitive impairment (e.g., locating lost items, reminding about tasks), (b) communication services to keep an active social life (e.g., video calls, email), (c) risk prevention and healthcare applications (e.g., fall detection, management of critical situations), and (d) applications for supporting everyday tasks (e.g., online grocery shopping, journey planning, simplified Internet access); other functionalities mentioned were entertainment (e.g., music, poetry, and reading) and information and news applications for keeping the user up to date with current events (e.g., broadcast news sources); “life memory albums” available via the robot to support autobiographic memory in persons with memory loss and encourage communication with caregivers and/or family members. Additionally, this application could include multimedia material, such as a genealogical tree, pictures and/or videos of significant moments of the life of the person.
Design
  Pigini et al. (2012) [87] Spain Aiming to generate user requirements and realistic usage scenarios maximizing the alignment with users’ needs, perceptions, feelings and rights of service robots in elderly care at home. Focus groups and questionnaires Preference of human-like appearance and the possibility of voice-command for controlling the robot.
  Pino et al. (2015) [88] France Investigation of acceptance of socially assistive robots among older adults living in the community. Questionnaire and focus groups Design: mechanical human-like robot integrating some anthropomorphic facial features within a global mechanical-looking design was preferred.
Needs for societal recognition
Recognition
  Jorgensen et al. (2010) [30] New Zealand Reporting the unmet needs. Telephone interview (scales and open-ended questions) Need for recognition for the caregiving role.
Abu Bakar et al. (2014) [41] Malaysia Examination of Malaysian efforts in assisting informal caregivers, based on an analysis of the issues and concerns raised by the caregivers themselves. Interviews (structured) Recognition and respect, support and encouragement, appreciation and understanding.
Mackenzie et al. (1996) [32] China Gaining personal accounts of experiences of primary caregivers caring for dependent family members. Interviews (semi-structured) Acknowledgement of the importance of the caregiver’s job.
Eldh et al. (2011) [31] Sweden Elucidation of the experience of providing informal care to an ageing parent while managing the responsibilities of a working life. Interviews (narrative) Society should acknowledging caregivers better for providing support and care for their ageing parents.
State responsibility
  Browne et al. (2014) [26] USA Investigation of health and care preferences that offer the potential for improving well-being in later life for Native Hawaiian elders. Focus groups Caregiving as a shared responsibility of the family and government; the government should have a role in taking care of elders and families (especially in making insurance and medications accessible and affordable); a few said that the government’s care measures goes against the family’s responsibility; receiving help from the family and friends (core Hawaiian value of family and extended networks). Barriers to government care include: (1) real or perceived costs of Services, (2) agency rules and regulations, (3) issues around respect and privacy, and (4) limited specific services.
Eldh et al. (2011) [31] Sweden Elucidation of the experience of providing informal care to an ageing parent while managing the responsibilities of a working life. Interviews (narrative) Need for legislation for supporting employees’ rights to provide care; need for such solutions.
  1. a: No specific interview type was mentioned