’Who Cares?' The experiences of caregivers of adults living with heart failure, chronic obstructive pulmonary disease and coronary artery disease: a mixed methods systematic review

Objective To assess the experiences of unpaid caregivers providing care to people with heart failure (HF) or chronic obstructive pulmonary disease (COPD) or coronary artery disease (CAD). Design Mixed methods systematic review including qualitative and quantitative studies. Data sources Databases searched: Medline Ebsco, PsycInfo, CINAHL Plus with Full Text, Embase, Web of Science, Ethos: The British Library and ProQuest. Grey literature identified using: Global Dissertations and Theses and Applied Sciences Index and hand searches and citation checking of included references. Search time frame: 1 January 1990 to 30 August 2017. Eligibility criteria for selecting studies Inclusion was limited to English language studies in unpaid adult caregivers (>18 years), providing care for patients with HF, COPD or CAD. Studies that considered caregivers for any other diagnoses and studies undertaken in low-income and middle-income countries were excluded. Quality assessment of included studies was conducted by two authors. Data analysis/synthesis A results-based convergent synthesis was conducted. Results Searches returned 8026 titles and abstracts. 54 studies—21 qualitative, 32 quantitative and 1 mixed method were included. This totalled 26 453 caregivers who were primarily female (63%), with median age of 62 years. Narrative synthesis yielded six concepts related to caregiver experience: (1) mental health, (2) caregiver role, (3) lifestyle change, (4) support for caregivers, (5) knowledge and (6) relationships. There was a discordance between paradigms regarding emerging concepts. Four concepts emerged from qualitative papers which were not present in quantitative papers: (1) expert by experience, (2) vigilance, (3) shared care and (4) time. Conclusion Caregiving is life altering and complex with significant health implications. Health professionals should support caregivers who in turn can facilitate the recipient to manage their long-term condition. Further longitudinal research exploring the evolution of caregiver experiences over time of patients with chronic cardiopulmonary conditions is required. Trial registration number CRD42016053412


AbstrACt
Objective To assess the experiences of unpaid caregivers providing care to people with heart failure (HF) or chronic obstructive pulmonary disease (COPD) or coronary artery disease (CAD). Design Mixed methods systematic review including qualitative and quantitative studies. Data sources Databases searched: Medline Ebsco, PsycInfo, CINAHL Plus with Full Text, Embase, Web of Science, Ethos: The British Library and ProQuest. Grey literature identified using: Global Dissertations and Theses and Applied Sciences Index and hand searches and citation checking of included references. Search time frame: 1 January 1990 to 30 August 2017. Eligibility criteria for selecting studies Inclusion was limited to English language studies in unpaid adult caregivers (>18 years), providing care for patients with HF, COPD or CAD. Studies that considered caregivers for any other diagnoses and studies undertaken in low-income and middle-income countries were excluded. Quality assessment of included studies was conducted by two authors. Data analysis/synthesis A results-based convergent synthesis was conducted. results Searches returned 8026 titles and abstracts. 54 studies-21 qualitative, 32 quantitative and 1 mixed method were included. This totalled 26 453 caregivers who were primarily female (63%), with median age of 62 years. Narrative synthesis yielded six concepts related to caregiver experience: (1) mental health, (2) caregiver role, (3) lifestyle change, (4) support for caregivers, (5) knowledge and (6) relationships. There was a discordance between paradigms regarding emerging concepts. Four concepts emerged from qualitative papers which were not present in quantitative papers: (1) expert by experience, (2) vigilance, (3) shared care and (4) time.
Conclusion Caregiving is life altering and complex with significant health implications. Health professionals should support caregivers who in turn can facilitate the recipient to manage their long-term condition. Further longitudinal research exploring the evolution of caregiver experiences over time of patients with chronic cardiopulmonary conditions is required. trial registration number CRD42016053412 IntrODuCtIOn A caregiver is anyone providing unpaid care, to a friend or family member who is unable to care for themselves. 1 This may be emotional support; someone to talk to, or practical support; dressing wounds, mobility assistance or medication checking. 2 There are 43.5 million caregivers in the USA, 2.86 million in Australia and 6.5 million in the UK. 3 Between 2001 and 2011, the number of unpaid caregivers in the UK grew at a faster rate than population growth. 4 The annual value of unpaid care provided to an individual with a chronic illness is estimated to be £132 billion. 5 Focus groups examining a caregivers' life conducted by 'The Institute of Public Care' (2017), based at Oxford Brookes University; described caregivers as the 'Skilled Helper' performing a series of roles. 6 Seltzer and Li describe a dynamic process of transitions to being a caregiver. 7 These transitions comprise participating in the role before identifying as strengths and limitations of this study ► This mixed methods systematic review provides the opportunity for a broadened and deeper understanding of the qualitative and quantitative literature on the experiences of unpaid caregivers' providing care to people with heart failure, chronic obstructive pulmonary disease and coronary artery disease. ► This review provides an integration of the type and extent of caregiver's experiences and predictors of caregiver's experiences. ► To maximise applicability we included studies from higher income countries only. ► Quality of evidence limited by assessment of caregiver experience at single point of time and there is need for future studies that employ longitudinal or repeated measures design.
Open access a caregiver, acceptance of the role, engaging in it with awareness and sometimes moving beyond the caregiving role when the patient moving to paid care settings or bereavement occurs. This process is not linear and people move through the different transitions at varying rates. Acknowledging this, it is imperative for caregivers to receive a caregiver needs assessment as legally stipulated by the 2014 Care Act. 8 Additionally, the National Institute for Health and Care Excellence clinical guidelines for heart failure (HF) (CG108) 9 and chronic obstructive pulmonary disease (COPD) (CG101) 10 both recommend that family members or caregivers are provided with support and included in discussions about care. Cardiopulmonary disease is a primary cause of illness. Cardiovascular disease is responsible for 45% deaths in Europe 11 and one in four deaths in the USA. 12 By 2020, COPD is projected to be in the global top five of diagnoses causing years lost through early mortality or disability-adjusted life years. 13 Caregivers of patients with HF have a multitude of unmet needs due to fluctuations in the trajectory of HF. 14 COPD has frequent unplanned hospital admissions and a high morbidity rate. 15 Caregivers experience depressed mood, greater anxiety and increased subjective burden when their support needs are not met. 16 17 The unpredictability of HF and COPD leads to caregivers constantly adjusting their role, creating a need to continuously reassess what caregiver needs are. 18 19 Spousal caregivers of patients with myocardial infarction experience increased levels of stress, lifestyle impact and emotional distress. 20 Caring for coronary artery bypass graft patients in tasks such as monitoring and provision of emotional support increased caregiver burden to a level described as moderate. 21 COPD and cardiovascular disease are both increasing in prevalence and frequently coexist. 22 23 We know of no systematic review that synthesises quantitative and qualitative studies to combine caregivers' experiences of people with HF, COPD or coronary artery disease (CAD).
Using a mixed methods systematic review methodology including both qualitative and quantitative literature, this study aims to understand the experiences of adult caregivers when supporting people with HF, COPD or CAD.

MEthODs
We conducted and reported this systematic review in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) statement. 24 Patient and public involvement There was no patient and/or public involvement in this systematic review.

study design
This study employed a mixed methods systematic review assessing both qualitative and quantitative studies. 25 The rationale for using a mixed methods review approach was multifaceted. First, to gain a qualitative assessment of the type and extent of caregiver's experiences. Second, to assess the quantitative predictors of caregiver's experiences. Third, to develop a holistic perspective of what caregiver experiences. Finally, we wanted to assess the degree of convergence between qualitative and quantitative experiences.

search strategy
Our search strategy was designed in conjunction with a Health Services Librarian and Information Specialists. Search terms included condition-specific terms, that is, 'heart failure', 'COPD' and 'coronary artery disease', caregiver-specific, plus experience related terms, 'experience', 'quality of life' 'activities of daily living', 'occupational engagement', 'time use', 'self-efficacy', 'coping strategies', 'leisure activity', 'information exchange' and 'caregiver expectation' (see online supplementary file 1, study selection Studies were included if they addressed 'caregiver experience', which was defined as encompassing the daily activities of caregivers and the impact of these activities on their lives. These were English language studies involving unpaid adult caregivers (aged >18 years), providing care for patients with HF, COPD or CAD living in the community and not residential settings with paid care staff. Qualitative, quantitative and grey literature studies were all included in the search strategy. Conference papers were excluded. Outcomes of interest included psychological and physical outcomes reported, occupational engagement and routine. As we sought to inform the practice of the UK and other high-income countries, we excluded studies undertaken in low-income and middle-income countries. 26 Data extraction Data extracted from retained studies included: study design, sample and recruitment, study description, method, findings, discussion and authors' conclusions and limitations. Caregiver quotes were extracted from qualitative studies. For quantitative studies, data extraction also included details of attrition and data analysis. study quality assessment Qualitative studies were appraised using the Critical Appraisal Tool. 27 In absence of an existing quality tool Open access that could be used to appraise quantitative studies addressing the specific question of this study, a quality assessment tool was developed by the research team based on what were deemed to be the appropriate core biases, that is, (1) was the study design longitudinal (score of 1) or cross-sectional (score of 0); (2) how was the sample recruited? Purposive (score of 1) or convenience (score of 0); (3) was the level of attrition/response rate acceptable? Attrition of 20%/lower or response rate of 80% or above (score of 1) or attrition of >20% or response rate <80% (score of 0); (4) was a validated quantitative outcome(s) used? Validated (score of 1), non-validated (score of 0); (5) were the methods of data analysis appropriate? Multivariate (score of 1) or univariate (score of 0). Based on their quality assessment, scores were totalled and studies were ranked: 1 or 2 'low quality', 3 'medium quality' and 4 or 5 'high quality'. Data extraction and quality appraisal was first conducted by a single researcher (MN) and checked by one of two researchers (JW or RST).

Data analysis and synthesis
The methodology of mixed methods data synthesis is an emerging one and no single approach has yet been universally accepted. 28 In this study, a results-based convergent design was chosen. 29 30 This requires transformation of one method into another. Due to the heterogeneity of the quantitative methods, a meta-analysis was not appropriate. Instead, applying a narrative profile formation, quantitative data were converted into qualitative data. 31 Extracted data from quantitative and qualitative studies were imported into separate spreadsheets. A meta-ethnographic approach was used to synthesise qualitative studies. 32 A narrative formation approach 33 was used to synthesise the quantitative data into a qualitative data set. Narrative formation is a verbal description via the use of profiles of each of the studies. The five profiles are modal, average, holistic, comparative and normative. 33 Table 1 provides an example of this approach. This resulted in two qualitative data sets 34 from which concepts emerged. A mapping table was completed in order to provide an audit trail of how the overall concepts across all papers were derived (see online supplementary file 1, table 2a, b and c). Initial synthesis was conducted by a single researcher (MN) and corroborated by two experienced researchers in quantitative (RST) and qualitative (JW) research.

rEsults study selection
Study selection process is summarised in a PRISMA flow diagram shown in figure 1. Following removal of duplicates, the search strategy yielded a total of 8026 titles and abstracts. Of these, 242 full papers were reviewed, of which 57 papers (54 studies) were included for synthesis. A detailed summary of included studies is provided in table 2. A comprehensive outline of study results and concepts generated by each study is included in online supplementary file 2).

study characteristics
Of the 54 studies, 21 were qualitative, 32 quantitative and 1 mixed methods. Thirty-four focused on HF, 14 COPD and 6 CAD. The total number of caregiver participants was 26 453. Caregivers were primarily female (63%), with a median age of 62 years. Patient median age was 69 years. A summary of study characteristics is provided in table 3.

Quality assessment
Studies of insufficient quality were excluded, qualitative papers were appraised and only high-quality qualitative studies were included. 35 A total of 21 out of 193 qualitative studies were classified as high quality. Quantitative studies were classified as follows: 3 high quality, 12 medium quality and 17 low quality (see table 4(a) and (b) for quality appraisal). Given the number of high-quality qualitative studies and in accord with current guidelines for the synthesis of qualitative evidence, we limited inclusion to qualitative studies of high quality only. 35 In contrast, given the low number of high-quality quantitative studies, to ensure comprehensiveness of our review, we included all quantitative studies, regardless of quality.

Mental health
Twenty-five quantitative, 36-62 20 qualitative 63-83 and 1 mixed methods 84 study addressed mental health. This encompassed depression and burden. Caregivers described an internal and external conflict of emotions, recognising a psychological change within themselves and the care recipient. Maintaining hope and positivity, versus managing worries, fears and anxieties was predominant.  The HF study by Pressler et al identified caregivers had moderately poor health at baseline and at 8 months but they had fewer depressive symptoms over time. 54 Burden arose due to greater responsibilities. 65 68 73 81 82 Yeh and Bull noted the quality of relationship and lack of family support significantly predicted greater family caregiver burden. 53 Nӓsstrӧm et al reported caregiver burden was concerned with the future and their fears of potential demands. 84 Those with greater resiliency appeared to adjust and cope better with the illness trajectory. 64 65 76 77 Caregivers described mental adjustment after an acute event. 77 Living through an acute event was long lasting and some experienced post-traumatic symptoms. 80  64 65 70 and caregivers need to reframe their identity. 72 80 Societal expectation regarding the relationship and gender, influences caregivers adjusting to their roles. 65  Caregivers experienced leisure, social and work-related problems. 36 39 90 Caring interrupted and eliminated Open access  Open access tasks from their routine. 36 39 59 Contrastingly, Pressler et al reported caregivers' perceptions of how their lives changed as a result of caregiving was neutral and improved from baseline to 4 and 8 months. 54 Caregivers became adaptable in their new role. 72 80 85 There was less personal time for leisure and hobbies either alone or with the care recipient. 67-70 76 77 82 83 Caregivers described daily 'ups and downs' and had to adjust their routines dependent on the presentation of the care recipient. 63 84 study examine support. This includes healthcare, family and social support. The weight of perceived external expectations, the necessity of being proactive in obtaining support and maintaining a social role was described across all diagnoses. 45 46 48-50 53-57 61 89 Yeh and Bull identified lack of family support as a significant issue. 53 Caregivers felt abandoned by healthcare teams. After hospital discharge they had to provide care without advice or medical support. 66 72 78 Positive interactions were reported, namely access to healthcare professionals via telephone or home support. 63 64 77 84 Knowledge This was addressed in 17 qualitative, 63 63 67 70 75 83-85 Caregivers report information from health professionals was often inadequate. 71 73 74 Timing and format of information was significant. Caregivers received information verbally or by leaflets in hospital but describe being left alone to provide care in the long term. 65 68 69 79 82 Caregivers had difficulty understanding how to navigate the care system. 72 80 They had to make decisions without full knowledge of the consequences of their decision making, particularly during acute exacerbations. 65 54 91 Higher relationship quality resulted in less burden and more benefit from the relationship. The relationship prior to diagnosis influenced the current relationship. Perspective of the relationship was either a sense of duty 65 74 80 81 84 or this was a valuable second chance. 66 75   Open access to isolation, stress and conflict between caregiver and care recipient. 71 73 The relationship requires negotiation. 69 85 Caregivers prioritised the care recipient over their own needs. 64 (44) Longitudinal, n (%) 4 (7) Cohort, n (%) 2 (4) Quantitative ( Open access observing health professionals. 66 68 83 They developed 'proto-professional skills'; in medication administration 65 80 85 judging care recipients' level of functioning 79 and decision making in times of exacerbations. 70 Caregivers observed the nuances of change in the care recipient often not perceived by healthcare teams or other family members such as skin colour or irritability. 72 75 81 Vigilance Vigilance was recurring in caregivers' narrative across all diagnoses and was present in 19 qualitative studies. 64-81 83 85 Caregivers were always on the alert observing the care recipient. 66 67 70 72-74 77-79 81 They lay awake at night listening for their partners' breath. 69 71 75 85 This impacted on caregivers' health creating constant fatigue, worry and stress. 65 79 Caregivers recognised that the need for vigilance came from themselves and their insecurities. 64 76 83 time Time explores how caregivers adjusted to living with the illness and was present in 15 qualitative studies. 65 68 81 and attending appointments. 73 The presence of illness was a process they adjusted to together. 76 80 Caregivers referred to themselves and the care recipient as 'we', when discussing dealing with the illness. 63 71 75 The mutual perspective between caregiver and care recipient served to isolate them from the world, the illness was 'taking a life of its own…it's like this third person' (Hynes, 2012(Hynes, , p. 1071). There were differences in caregiver experience for each of the diagnoses and these are discussed below.
heart failure HF caregivers experienced an 'ebb and flow' in caring, an underlying worry, fear and anxiety, which at times of  85 92 In spousal relationships, they predominantly  Open access viewed the care recipient as another child or as a 'duty'. 50  Chronic obstructive pulmonary disease COPD caregivers experienced a prolonged impact on their mental health similar to HF caregivers. 41 44 52 60 65 70 80 Severity of illness was influential on their experience of burden. 38 43 44 60 Role change was long lasting and profound for many. 65 67 70 80 They expressed concerns with perceived lack of knowledge. 62 65 70 74 80 During exacerbations, COPD caregivers experienced anxiety and fear of their loved one dying. 65 67 70 74 COPD caregivers highlighted the loss of social roles while trying to maintain the dignity of their loved ones. 65 70 74 80 89 90 The coughing and spitting associated with COPD often left the care recipient embarrassed. 65 67 80 The caregiver tried to avoid situations where this would happen. The dynamics of spousal relationships changed, caregivers described losing the intimate love they had for their partner. 65 70 74 80 Coronary artery disease Caregivers of patients with CAD experienced intense role change on discharge from hospital and in the acute phase of illness. 47 68 79 82 87 88 They initially engaged with a high volume of tasks which reduced over time. 46 47 68 79 82 87 88 CAD caregivers experienced post-traumatic symptoms if they witnessed the recipient experience an acute event. 79 82 Caregivers described being unable to talk about this and reliving the event in their heads. Anxiety did ease over time for many. 79 82 Caregivers felt unprepared at hospital discharge and highlighted not realising how much their routine would be disrupted. 68 79 82 Caregivers reported viewing the experience as a second chance and had a renewed sense of love and appreciation for the relationship. 79 82 DIsCussIOn This mixed methods systematic review demonstrates the similarities and differences in caregiver experiences across three common cardiorespiratory conditions. It highlighted the differences in experiences obtained from qualitative and quantitative research. Commonly occurring experiences included the exacerbation of caregiver physical and mental health due to the role. This correlates with systematic review of HF caregivers by Kang et al identifying that caregiving resulted in a multitude of changes in caregiver's lives regardless of age, gender and ethnicity. 93 Addressing both patient and caregiver needs in order to maintain well-being for both is important 19 95 Lawton et al attribute caregiver well-being to the commitment of the caregiver to the role and dealing with competing demands, which can increase burden and negatively impact affect. Spousal caregivers may be more ready to accept the role of caregiving than adult children who may view it as an imposition on an already established lifestyle. 96 In this review, societal expectations had an impact on how caregivers adjust to their role. Additionally, the quality of the relationship prior to becoming a caregiver had an influence on the caregiver subjective experience of burden. Caregivers had predominantly negative experiences of support and described uncertainty of how to obtain this. Caregivers need greater support and knowledge transfer to conduct their role. 97 They should be included in clinical appointments 98 to ensure they are not isolated in providing care and to allow for knowledge exchange. Giacomini et al in their review of caregivers living and dying with COPD reported increasing isolation in addition to their own health issues. 18 They described pressure balancing their variety of roles; similar experiences to the caregivers in this synthesis across all diagnoses. Caregivers emphasised their need to be vigilant. This falls into five categories as defined by Mahoney's study of Alzheimer's caregivers; 'watchful supervision', 'protective intervening', 'anticipating', 'on duty' and 'being there'. Caregivers in this synthesis described overt vigilance, putting one's head on the chest of the recipient to check breathing or covert vigilance; observing them throughout the day. 99 Healthcare professionals must be aware of these levels of vigilance and the constant presence of them to support caregivers in their role.
Caregivers are valuable providers of care. Caregiver's needs should be assessed systematically and in a formalised manner in healthcare settings. 16 When Open access developing collaborative models of care the inclusion of caregivers is imperative. 100

strengths and limitations
This review demonstrates the complexity of what it means to be a caregiver and should inform clinical care development of interventions. A mixed methods review can be contentious 101 due to the synthesis of differing paradigms. In this review, it required transformation of quantitative data into qualitative data. 15 102 We aimed to present a convergence of caregiver experiences by conducting a mixed methods synthesis. However, it demonstrated four differing concepts between the two paradigms. This highlights the challenge of synthesising multiple methods. It is worth exploring how the four additional qualitative concepts could be captured quantitatively in order to inform healthcare intervention. This mixed methods synthesis is, to our knowledge, the first to combine caregiver experiences in HF, COPD or CAD. It examines the differences and similarities in experiences, establishing a comprehensive assessment of the knowledge base of caregiver experiences in common cardiorespiratory conditions.
There are limitations to this study; both in our review methods and the nature of included studies. First, we acknowledge that the inclusion of lower quality quantitative studies may lead to risk of bias: the majority of quantitative studies used convenience sampling, had a high attrition and low response rate. Non-validated outcome measures were used in some quantitative studies with the majority of studies conducting univariate rather than multivariate analysis. However, given the limited number of high-quality quantitative studies (four studies), we believe this broader inclusion increased the scope of our review in order to achieve a holistic understanding of Open access caregiver experiences. Furthermore, we would note that the conclusions of this review were broadly the same with consideration of only the high-quality quantitative studies. Second, studies were restricted to English language only, from high-income countries and excluding caregivers of nursing home residents. This may limit the applicability of findings to other settings. Third, converting quantitative data into a qualitative data set risks the quantitative data set being oversimplified. This was managed with regular research team meetings to review each stage of this process. Fourth, qualitative synthesis is an interpretation of other researcher's interpretations. To minimise individual interpretative bias, a second researcher was used to seek confirmation of the results. Finally, included qualitative and quantitative studies were primarily cross-sectional in design, therefore considering caregiver experience only at a single point of time.
Implications for practice and future research There are a number implications following this review. It has demonstrated there are similarities and differences in the caregiver experience in HF, COPD or CAD. The impact on caregiver's lives of those with HF and COPD appears longer lasting and more turbulent than caring for patients with CAD. CAD caregiver's experience of hospital during exacerbations increased distress at discharge. This review reflects the complexity of the caregiver's role. The mixed methods approach indicted differences in what is being investigated. This is important in demonstrating an understanding of the caregiver experience when dealing with complex conditions. Future research should focus on involving caregivers in the design and delivery of interventions for patients with cardiopulmonary disease. Best practice interventions for CAD caregivers in the discharge process from hospital to home must be formalised. There appears to be a focus on the mental health of caregivers of those with HF; however, further research is needed to explore this in COPD and CAD caregivers. Exploration of this via support groups for caregivers of cardiorespiratory conditions is merited. Clinically, the healthcare team need to identify who the caregiver is and be aware of their needs with the use of a carer's needs assessment. There must be a greater understanding of caregiver support needs, what they avail of and are they aware of what is available to them in the community. This can be achieved in conversation between the healthcare team and caregivers and warrants further research as to how and whether caregivers avail of external supports. Consideration needs to be given as to whether quantitative research tools to explore caregiver expertise, view of the future, experience of shared care and vigilance can be developed to capture these qualitative concepts to inform the development of self-management interventions for patients and caregivers. Repeated measures examining perceived control and caregiver needs may contribute to a greater understanding of caregiver experiences, which arose in qualitative studies. Additionally, longitudinal studies with repeated assessment need to be conducted to assess the stability of caregiver experiences and whether they are liable to much change over time. In this review, only 4 out of 32 quantitative studies examined caregiver's experiences longitudinally. Understanding whether there are caregiver changes over time will facilitate greater understanding of caregiver needs for health professionals when working with this population. The emergence of additional concepts from qualitative studies emphasises the role of mixed methods research when examining lived experiences. The additional concepts also demonstrated the nuanced expertise of the caregiving experience. It is important for researchers to consider how to reflect this in quantitative investigation so as to inform funders in order to develop and trial interventions in HF, COPD and CAD. The quality of quantitative studies in COPD and CAD were medium or low. There is a need for more empirically robust studies examining the experiences of these caregivers. Additionally, greater understanding of caregiver's experiences with this population will facilitate the development of robust evidence-based guidelines for health services when working with HF, COPD and CAD.

COnClusIOns
This mixed methods systematic review provides a holistic synthesis of caregiver experiences of people with HF, COPD or CAD. It demonstrates there are a number of implications when an individual becomes a caregiver for those with chronic cardiopulmonary disease. Caregivers reframe their identity and change their life course. Caregivers learn a multitude of skills and develop expertise in their new role. Their expertise is invaluable and should be acknowledged in healthcare interventions for these conditions. The quality of evidence was limited by assessment of caregiver experience at single time point. There is need for future studies that employ longitudinal designs examining the change in caregiver experience over time. Caregiving can be positive if caregivers have access to support, are well informed and part of the healthcare team. Understanding the experiences of caregivers for people with these conditions allows healthcare professionals and policy makers to reflect on our approach. Health services must consider caregivers in the design and delivery of interventions.