Informal carers' support needs, facilitators and barriers in the transitional care of older adults: A qualitative study

Abstract Introduction Inclusion of informal carers in transitional care is challenging because of fast throughput and service fragmentation. This study aimed to understand informal carers' needs during the care transitions of older adults from inpatient care to the community. Methods A qualitative exploratory design was used with mixed‐methods data collection. Seventeen semi‐structured telephone interviews were conducted with family carers; one focus group was conducted by videoconference with two family carers and three community‐based advocacy and aged care providers; and eight semi‐structured telephone interviews were undertaken with healthcare practitioners from rehabilitation services. Data were thematically analysed. Findings All carers described the main social challenge that they needed to address in transitional care as ‘Needing to sustain family’. Carers reported their social needs across five solutions: ‘Partnering with carers’, ‘Advocating for discharge’, ‘Accessing streamlined multidisciplinary care’, ‘Knowing how to care’ and ‘Accessing follow‐up care in the community’. Focus group participants endorsed the findings from the carer interviews and added the theme ‘Putting responsibility back onto carers’. All healthcare practitioners described the main social challenge that they needed to address as ‘Needing to engage carers’. They reported their social solutions in three themes: ‘Communicating with carers’, ‘Planning with carers’ and ‘Educating carers’. Discussion Findings highlight the importance of reconstructing the meaning of transitional care and relevant outcomes to be inclusive of carers' experiences and their focus on sustaining family. Transitional care that includes carers should commence at the time of hospital admission of the older adult. Conclusions Future sustainable and high‐quality health services for older adults will require transitional care that includes carers and older adults and efficient use of inpatient and community care resources. Healthcare professionals will require education and skills in the provision of transitional care that includes carers. To meet carers' support needs, models of transitional care inclusive of carers and older adults should be developed, implemented and evaluated. Public Contribution This study was conducted with the guidance of a Carer Advisory Group comprising informal carers with experience of care transitions of older adults they support and community‐based organizations providing care and advocacy support to informal carers.

inpatient and community care resources. Healthcare professionals will require education and skills in the provision of transitional care that includes carers. To meet carers' support needs, models of transitional care inclusive of carers and older adults should be developed, implemented and evaluated.
Public Contribution: This study was conducted with the guidance of a Carer Advisory Group comprising informal carers with experience of care transitions of older adults they support and community-based organizations providing care and advocacy support to informal carers.
informal carer, older adult, transitional care, user experience

| INTRODUCTION
Informal carer support during older adults' transitions from hospital to the community is crucial to ensure safe care. Yet, inclusion of informal carers as part of older adult transitions is challenging because of the fast throughput and service fragmentation. 1 Informal carers (carers) are those who provide unpaid support to older adults and others in the community and typically comprise family and friends. 2 Transitional care is defined as the continuous and coordinated care for patients and carers across different health programmes and settings including discharge from hospital to home. 3 When there is suboptimal involvement of carers in the transitions of older adults, this results in adverse outcomes including increased carer stress, unmet needs at home, unnecessary readmission to hospital and unwanted permanent placement in residential care. [4][5][6] Few evidence-based carer-centred resources are available in transitional care of older adults because limited research has been conducted. 5,7 This study aimed to address this gap by describing carer roles and needs during the care transition of older adults to the community.

| Transitional care for older adults and carers' support needs
Currently, transitional care research emphasizes outcomes for health services such as early readmission rates and length of stay. 8,9 In these studies, 8,9 researchers identified that compared with usual care, formal transitional care interventions including discharge assessment, planning, care coordination, medication reconciliation and selfmanagement reduce length of stay and readmission rates. Two well-researched models used in the United States of America, the Care Transitions Intervention 3 and the Transitional Care Model, 10 have been influential in orienting health services towards the importance of self-management and advanced practice nursing support. In Australia and in the United Kingdom, transitional care for older adults is characterized by multidisciplinary teams aiming to promote rehabilitation and care integration between inpatient and community providers. 11,12 Researchers have explored the outcomes of transitional care integrated with multidisciplinary and aged care teams and found reduced readmission rates and reduced functional decline in older adults. 4 Despite these improvements in knowledge, these outcomes have not consistently translated into practice and the optimal role and involvement of carers during older adults' care transitions remain under-researched. Consequently, there is a limited evidence base to guide health services in care and support for carers. 7 Limited research has been conducted with carers. A systematic review of transitional care education interventions for carers of older adults who have experienced stroke found that education was effective in reducing carer burden and anxiety. 13 In another systematic review, home-and outpatient-based medication reviews in the follow-up period after hospitalization improved carers' medication knowledge and self-efficacy. 14 Other studies have identified that carers need support with problem solving and decision-making during the follow-up discharge period, 15-19 support to access and navigate community-based programmes [20][21][22] and support to clarify expectations of services. 23 Some researchers have identified that carers can be ignored by healthcare practitioners during transitional care of older adults. 2 Research to describe carer-centred transitional care that includes carers in transitional care decision-making would improve understanding of carer support needs. Future research is required to provide guidance that supports the growth of carer-focussed health service systems and resources during the transitions of older adults from hospital to home.

| RESEARCH AIM AND OBJECTIVES
This study aimed to understand carers' roles and needs during the care transition of older adults from inpatient care to the community.
There were two research objectives: 1. To describe carers' roles and support needs.

| Conceptual framework
Transitional care of older adults is shaped through social interactions between older adults, carers and healthcare practitioners within social contexts of healthcare. We therefore adopted a social constructivist understanding of user experience. In this conceptual framework, user experience was viewed as a social process that is generated by people through their interactions with each other and with their social environment. 24,25 In this study, 'users' include carers supporting older adults receiving services and healthcare practitioners providing services. The main meaning unit for qualitative analysis was user experience.
We interpret inclusion of carers in transitional care as any user experience where carers took part in transitional care planning and decision-making with healthcare practitioners in inpatient or community settings. Drawing on Spencer et al., 26 enabling and constraining factors were any experiences facilitating carers' involvement in transitional care or hindering their involvement.

| Setting
This study was undertaken in the Australian community. Carer participants for the semi-structured telephone interviews were recruited through community-based carer advocacy and support services in the Australian states of Victoria, Western Australia, South Australia, Queensland and New South Wales. Carer participants for the focus group were recruited through the community-based carer advocacy and support service in Victoria. Community-based providers and representatives for the focus group were recruited from one community-based carer advocacy group in Victoria and two culturally specific community organizations providing aged care for Greek and Italian communities.
Healthcare practitioners were recruited from one large urban public healthcare network in Victoria and two national professional organizations representing nurses and social workers.

| Ethics approval
Approval was obtained from the Monash University Human Research Ethics Committee for the semi-structured interviews with carers and for the focus group. The Monash Health Human Research Ethics Committee provided ethics approval for the interviews with healthcare practitioners. An explanation of the study was guided by an Explanatory Statement as relevant to the semi-structured interview or focus group. Participation in the study was voluntary.
All participants provided written consent. All data were deidentified and all interviews were audio-recorded for transcribing.

| Carers
Carers were aged 18 years or older and were supporting an older adult aged at least 65 years and living in the community with multiple chronic health difficulties. Carers were required to have recent experience, within the last 2 years of a discharge from hospital to home following admission for a physical health problem of the older adult who they supported. Purposive sampling was used with maximum variation for ethnicity and geographic location including metropolitan and rural areas.
Initially, carers who fulfilled the selection criteria were recruited with the support of one participating carer advocacy and support organization in the Australian state of Victoria. Carers were invited to participate in a semi-structured telephone interview and to contact the first author for additional information via an invitation provided in newsletters, social media and the websites of the participating organization. To optimize the saturation of data, we sought 25 carers.
However, because of the COVID-19 pandemic, and subsequent delays in recruiting carers, we expanded the recruitment base to carer advocacy and support organizations nationally. We also expanded our recruitment period. Carer participants were interviewed between March 2020 and October 2021. Across this period, we recruited 27 participants, with 10 declining to take part in an interview due to lack of time. This resulted in a total of 17 interviews with carers.

| Healthcare practitioners
Healthcare practitioners aged over 18 years of age who were providing transitional care to older adults in inpatient rehabilitation settings were eligible to participate in the study. Purposive sampling was used to select healthcare practitioners from nursing, allied health and medicine. Managers at the participating Victorian public health service in rehabilitation care were asked to provide recruitment information about the study to practitioners who fulfilled the inclusion criteria. Interested participants were invited to contact the first author for an explanation of the study. We originally sought 10 healthcare practitioner participants to triangulate healthcare practitioner interview data with that of carer participants. Due to the COVID-19 pandemic and delays to research activities in the participating health service, we expanded our invitation to take part in the study in the newsletters, social media and websites of one national professional organization for nurses and of one national professional organization for social workers. We selected professional organizations for nurses and for social workers because nurses and social workers are frequently engaged in transitional care. 4 In recruitment information, nurses and social workers were asked to contact the first author for an explanation of the study. We recruited nine healthcare practitioners, with one declining further participation due to lack of time. Eight healthcare practitioners were interviewed from August 2020 to November 2021.

| Procedure
Carers and healthcare practitioners who contacted the first author were sent the relevant Explanatory Statement and Consent Form for their consideration. With the carer's or healthcare practitioner's permission, the first author contacted them by telephone to explain participation in the study. Participants were asked to return the signed Consent Form to the first author either by email or by regular mail. Upon receipt of the signed Consent Form, the first author contacted the participant to make an appointment for an interview. All interviews were conducted by the first author by telephone. The first author is educated at postgraduate level and is skilled in conducting semi-structured interviews with research participants. Additionally, the first author is a female registered nurse, with skills in community nursing practice and experience in interviewing carers of older adult adults living with chronic disease and healthcare practitioners. The first author documented field notes following each interview to assist with data analysis.

| Focus group
Because of recruitment challenges due to COVID-19, we did not meet our recruitment plan to interview 25 carers. We therefore checked for saturation of categories by conducting one focus group with carers and with community-based advocacy and aged care providers. In this focus group, we presented themes and subthemes from the semi-structured interviews with carers to the focus group participants and invited additional feedback.

| Participants
The inclusion criteria for carers were the same as those followed for the interviews. Carers were recruited with the support of a carer advocacy and support organization in Victoria through an invitation provided in their social media. Interested carers were asked to contact the first author. The first author explained participation in the focus group and requested written consent. Additionally, we purposively sought participants from one community-based carer advocacy organization and two culturally specific community-based organizations providing aged care for Greek and Italian communities.
We selected organizations supporting Greek and Italian communities as these are the most frequent older adult populations among migrant communities in Australia. 27 Managers at each organization were sent an invitation explaining the study with a request for one member of their staff to participate. Interested participants contacted the first author, who explained the study to them and requested their written consent. In total, five participants took part in the focus group including two carers and three participants from community-based organizations and aged care providers.

| Interview guide
In the focus group, we presented a summary of the themes from the findings in the semi-structured interviews with carers. Following recommendations by Bate and Robert, 25 we used the questions 'Do the findings make sense? How/how not?' to guide the discussion and collect any additional information.

| Procedure
There were public health restrictions preventing social gatherings because of the COVID-19 pandemic. Therefore, the focus group was conducted and recorded online using video conferencing software.
The first author facilitated the focus group with the support of a research assistant. The research assistant observed group dynamics occurring virtually and documented field notes to assist with data analysis.

| Data analysis
Demographic information from data captured during semi-structured interviews with carers and healthcare practitioners was tabulated. All interview recordings were transcribed for analysis. All qualitative interview data were thematically analysed by the first author using the inductive data analysis technique of thematic analysis. Thematic analysis was guided by the study aim and supported by the framework analysis method. 28 Carer interviews, the focus group interview and healthcare practitioner interviews were analysed as three distinct groups. Codes were then compared and contrasted to develop categories and themes. Each interview transcript was coded independently by two coauthors. Raw data files (interview transcripts) were cross coded between the first author and one other coauthor as part of dependability and confirmability checks to derive | 2879 a credible formulation of the data. The trustworthiness of the study methods was supported by the triangulation of each data set. 24

| FINDINGS
A total of 30 carers, healthcare practitioners and representatives from community and peak body organizations took part. We present the findings from the semi-structured interviews with carers, the focus group with carers and representatives from community and peak body organizations and semi-structured interviews with healthcare practitioners. A summary of findings from each data collection method is shown in Figure 1

| Semi-structured interviews with carers
All 17 carer participants were family carers and most (14) were female. Carers were aged between 44 and 80 years. Carers' education ranged from Year 9 secondary school to a master's degree at university. Most carer participants (12) resided in urban areas and five resided in rural and regional Australia. All carers spoke English and five spoke a first language other than English. Demographic information of carers is presented in Table 1.
The 17 carers supported an older adult who had experienced at least one care transition from an inpatient setting to their own home within 2 years of the interview. Older adults receiving carer support ranged in age from 71 to 92 years and most (11) were female.
Demographic information about older adults receiving carer support is presented in Table 2.
All carers described the main social challenge that they needed to address in transitional care of the older adult as 'Needing to sustain family'. Carers reported five themes describing facilitators: 'Partnering with carers', 'Accessing streamlined multidisciplinary care', 'Advocating for discharge', 'Knowing how to care' and 'Accessing follow-up care in the community'. Participant carers further explained barriers within each of the five themes. Quotes illustrating each theme are presented in Table 3  Nine carers explained that they experienced effective communication with community services at follow-up. Twelve carers reported that referrals to community care were not necessary because they already had services at home. According to these carers, their existing community care support was responsive and timely, although one carer commented that the community service was inadequate for her father's complex nursing care needs. Another carer explained that her mother was referred to Hospital in the Home and to the local council; however, this resulted in confusion about which service was responsible for care at home and errors resulted. One other carer reported that she was not offered any support at home from either the inpatient service or the community aged care case manager.
Seven carers discussed the value of social workers and allied health to undertake assessments at home and avoid gaps in follow-up care. Two carers noted that they were unable to access physiotherapy reviews in the home and that inpatient practitioners advised them to arrange for private physiotherapists. Another carer reported that the inpatient practitioners required him to find a high-care respite bed for his wife at short notice to free up the bed.
Four carers commented on the valuable support from an allied health professional about navigation of community supports. Eight carers reported that community-based organizations assisted them in navigating services and another three carers reported that the Aged Care Assessment Services supported them in navigating community services. One carer noted that the Aged Care Assessment Service was not able to advise her about navigating care for her husband who lived with dementia. Another two carers reported that the community aged care case managers did not contact them and one of these carers consequently decided to take over her mother's case management.

| Focus group
Following presentation of the themes from the interviews with carers, all five focus group participants endorsed the findings. Focus group participants, including two family carers and three communitybased advocacy and aged care providers, added the theme 'Putting responsibility back onto carers'. In this theme, all participants described their experience that the health and aged care services discharged older adults too early and provided inadequate community support for carers. All participants reflected that the health and aged care systems use informal unpaid carers to support older adults to save money for health and aged care services.

| Healthcare practitioners
Eight healthcare practitioners took part in an interview. Seven participants were female. Participants' ages ranged between 30 and 59 years. All participants were employed in public health services located in eastern and south-eastern Australia. Table 4 presents the demographic information.
All healthcare practitioners described the main social challenge that they needed to address in care transitions in the theme 'Needing to engage carers'. They reported their social solutions to this problem in three themes: 'Communicating with carers', 'Planning with carers' and 'Educating carers'. Quotes illustrating each theme are presented in The theme of accessing community-based follow-up care included carers' reports of challenges with service navigation, care coordination and service integration. This indicates unmet needs for some carers during the follow-up period. Australia, like many other western countries, has undergone a policy and funding shift to consumer-directed models of community-aged care and subsequent increases in responsibility for carers. 29 There are many benefits of these models such as greater choice and control over decisionmaking for older adults. 30 However, echoing previous research, 29,31 the current findings identified that consumer-directed care models have changed the support needs of carers. Carers increasingly require assistance with service navigation and coordination during the follow-up period in care transitions.
Findings from this Australian study and from previous international studies 15,18,20,[32][33][34] indicate that transitional care that includes carers of older adults in decision-making is ad hoc. Findings from these studies 15,18,20,[32][33][34] suggest that in western countries, transitional care requires redesign to consistently meet the support needs of carers and older adults to remain living in the community in accordance with their wishes. Some health practitioners' inconsistent and ad hoc approach to including carers and older adults in decisionmaking during care transitions suggests that patient throughput and bed management may be their primary considerations. This is also mirrored in the transitional care research where indicators of health services' efficiencies are emphasized. 8 However, quality transitional care is a multidimensional practice construct where multiple priorities require attention. Transitional care systems and practices that support the inclusion of carers and older adults in decision-making are imperative alongside efficiencies for health services.

| LIMITATIONS
There are several limitations to the current study. All carer participants were family carers; therefore, the perceptions of nonfamily carers of older adults were not captured. We included carers supporting older adults with multimorbidity. Carer support needs may vary for older adults with specific health conditions, and we may not have captured this information. We are unable to comment on issues in the data influenced by local conditions and health systems because we sampled carers across Australia.
Therefore, the current findings describe carers' experiences of transitional care across a range of Australian health services. We included eight healthcare practitioners and we cannot claim data saturation. All healthcare practitioners were employed in rehabilitation, and the perceptions of healthcare practitioners in other settings were not ascertained. However, healthcare practitioner interviews were undertaken as part of data triangulation. We argue that these interviews provided additional insight about the rehabilitation practice environment including enabling and constraining factors that carers may encounter during care transitions. This information may be of use to others in similar contexts of care elsewhere.

| CONCLUSIONS
Future health services policy regarding older adults will depend upon transitional care that includes carers as part of routine practice in decision-making. Healthcare practitioners will require quality communication skills to deliver transitional care with carers and older adults. This will require increased focus on the preregistration education of healthcare practitioners. Carer involvement in care transitions will be essential to sustainable high-quality care for older adults alongside efficient use of inpatient resources including the management of inpatient beds. To address carers' support needs, models of transitional care should be developed, implemented and evaluated using participatory methods with carers as experience experts and as educators of policy makers, health services planners and healthcare practitioners.

AUTHOR CONTRIBUTIONS
Jacqueline Allen, Michelle Lobchuk, Patricia M. Livingston and Alison M. Hutchinson contributed to the study design and conceptualization. Jacqueline Allen led the data analysis and formulation of the data, and all coauthors contributed to the coding and data analysis.
Jacqueline Allen led the writing of the manuscript, with contributions from all coauthors. All authors reviewed and approved the final manuscript.